Funniest thing is that I kept being told, "Be honest with us.", "That's what friends are for. " Then, when you finally explain, they are dumbfounded and don't have any idea what to say. My experience of being honest has caused loss of friendships. Even more than if I just stay home and don't do anything. Hugs to everyone experiencing a chronic illness. Remember, you're not alone.
I've had fibromyalgia and ulcerative colitis for around 5 years at this point. I've learned that if there is an event I want to go to I have to make 3 tiers of being able to go: 1. Basic, just turn up even if not feeling the best 2. Feeling okay, maybe bring a pre-made dish or a soft drink or 3. Feeling great, made a dish day of and able to mingle wholeheartedly. Your friends want you there because they love you. Don't over pressure yourself with expectations of "I should make this or bring this or do that." If your friends are good people, they are going to be happy you showed up because it shows that you value them in your limited energy allotment. And don't be afraid to be honest. Carry around an info card if you're really tired that says all the reasons you might be low energy but still there. Life is messy. Chronic illnesses suck. But at the end of the day we are still people who want to have friends and do things, same as anyone else.
yes!! my friends and i dont even have to invent excuses if one of us doesnt feel good even mentally they will say "you know lets rearrange i do not feel up to it" and either we do or we talk about whats going on. And we dont have to perform anything ...we are FRIENDS. Love your post!
I have had UC since I was 11 years old. I got used to the symptoms, no one felt sorry for me ever so why feel sorry for myself? I am one tough cookie now on remission fir 20 years. Now and then I have a flare, once was hospitalized after a week long bout if Diarra about 15 years ago, dehydrated and the small and large intestine telescopes and blocked my intestines. Thought I was destined for surgery
I can definitely relate! Your explanation of "I'm tired" had me cracking up though. I thought of the saying, "Those who mind don't matter and those who matter don't mind." I want friends that I can be myself around; faking it takes too much of my precious energy. That doesn't mean people always need to know every detail of my health, but if I'm really struggling I want to feel comfortable expressing that, spending more time with people I feel safe expressing that with. Loss of spontaneity is something I grieve at times, but chronic illness has taught me a lot of compassion, to be grateful for the little things and what I CAN do. For example, I can't always spend an entire day out or be super active, but you can bet I'll be texting you to check in or encourage you and crocheting you a blanket! lol It's been a good tool to weed out fake friends too
I have felt this way my entire life.. I have IBS and always tummy issues… and migraines …. The migraines and tummy issues are related . So we married at 19 we are 71.. and the truth is that sometimes doing the get together are exhausting! Say no…. It is ok to say no…I didn’t get to this point easily we have had and still have a lot of things that happen. We have two dogs one is over 14 the other is over 10. We cannot leave for long periods of time or the 14 will have an accident… Life keeps presenting situations that challenge..know what is truly good for you.. and do that and thrive♥️♥️
IBS here too. It took years for certain kin to really understood when it came to eating certain things,no means no. I do not care what others think and just do what is best for me.
This is tough for me to answer as someone with a physical disability that does impact my going to the rest room. It's always bothered me more how people respond rather than any thought on my part. All that said being incontinent allows there to be set times when I go to the restroom. As far as a partner relationship I am not in one and would never consider being in one with anyone who couldn't handle my reality or expected payment for handling it. When out and about what's most difficult is a standard restroom with one potty one sink and people waiting if I'm the one in there. I've gotten questions like what took you so long or you should be like or do such and such. I think the hardest part is when choosing to attend something that ends up being several hours, but falls between my potty schedule, is when people notice I haven't gone and offer to take me, even barely knowing me, unaware of what's really involved. Those things make it harder so id just rather people not ask questions or offer help. I thrive on consistency and regularity being spontaneous generally gives me anxiety. But if people genuinely want me around they better take into consideration all that entails or I really want no part of it.
I got my ileostomy ten years ago. I’ve not had intercourse with my husband since then. He is such a loving, caring and supportive person and I can count myself lucky. Seriously. Although I can talk to him about every problem or detail regarding my stoma, he’s obviously not physically attracted to me anymore. I’m sure that the fact that I myself am so unhappy with the situation does also influence him. Bottom line is, we used to have an incredible sex life. No other partner before him actually made me want to be intimate every day. It’s therefore even more painful to have lost that intimacy. We are both in our early 50s and I think it’s just too early to give up on all the fun. It makes me really sad. The other aspect of having lost general spontaneity is also something I completely understand. You don’t want to be the “party pooper”, but sometimes it feels like all the life has been sucked out of you and all you can do is be present but not active. Basically surviving. And it’s completely impossible to make others understand how much things add up and culminate into a “tired” person. It makes me feel lonely. I want to be there but I don’t want to bring down the atmosphere with my tiredness or even worse, my horrendous explanations.
Honestly Maggie if I had the answer I would love to let everyone like this know😞 I’m the worst person to depend on, to show up for anything and if I actually do show up the fear of being sick is just as bad as being sick. I never eat when I’m out and I feel like all I do is disappoint people. Forget about sex😳 however I’m 55 and things with me didn’t get bad until I was in my forties so I was able to be a functioning mom for the majority of my kids growing up❤️ and I’m very thankful for that. I want to get better so I can have a bit of a life before it’s gone but I have to come to terms with the possibility that this is just the way it’s going to be and I pray it doesn’t get any worse 🤞🤞I have recently started to paint and that helps a lot with what’s going on mentally ❤️🌹 I hope you had a nice Valentine’s Day 🤞✌️
I can relate! I'm an incomplete paraplegic. I also have bowel issues. I'm in my chair most often. I can walk a very short distance. Anyway, I so often experience the same feelings. I'm 67 yrs old and was 46 at the time of my accident. And also I have severe hearing loss. I try to have fun and enjoy things with my husband also. But really those times are becoming fewer as time goes on. I have finally decided that if I'm not comfortable being around other people, then I just need to say NO I don't think I'd like to go. While being around other people doesn't really bring me a lot of joy, I've had to learn to do the things that do bring me joy. At my age, staying home, reading books, doing crafts, and sewing. And spending time with family is my idea of a great time. Intimacy is pretty much an old stranger to us. But we survive. You have your videos, which by the way have been very therapeutic to me. I've also come to realize we are not alone. Every person we meet probably has something they too are struggling with. Our normal may be different than the next person's. But hey, their normal is in some way very odd as well. Therapy has helped me, but I have a long way to go.
It is incredibly validating to hear you discuss these very relatable issues!! Losing spontaneity, fear of missing out, etc... I hope it is ok that I vent a bit here.The part where you shared things "you would have said" instead of saying you are tired had me in tears. That is EXACTLY what I have go through my mind when anyone asks how I am, why I am not eating, why I am quiet, why I didn't attend whatever, etc... I hate the small talk "how are you?" I am an honest person who now feels forced to lie. A healthy person can't truly understand how much thought and energy goes into basic daily life with a debilitating chronic condition. I was lucky I went through a few years of feeling ok, of being able to manage my digestive health issues well enough to build a career, enter a great committed relationship, develop friendships, etc...When my health started to decline again though 9 years ago everything I had built up started to fall apart. First I had to leave my career, then social commitments/volunteer work, then friends disappeared... When after another 2.5 years my health continued to decline my 4 year long committed relationship collapsed. He went from compassionate and supportive to resentful, from open to shut down, from loving to demeaning. I could not tolerate the hatefulness, so I was the one to leave. I am happier sick & alone than I was sick & with someone who blamed their unhappiness on my illness. It is exhausting though.
Happy Valentine's Day. I've experienced the same feelings and emotions. I was diagnosed with ulcerative Colitis in 2019 and I also had several strokes which put me in a wheelchair. Definitely a game changer. I've had to adapt and adjust.
Since I was diagnosed with Crohn's about 5 years ago a lot of things had to change. What I did to relieve my frustration with losing spontaneity was a bit of compromise. First, I prioritized the people in my life, for example, my husband gets first dibs on my energy. When I'm having a good day I do something just for him, make him a special meal or dessert, I offer to scratch his back to make him feel special. My Mom trumps my husband if she needs me, she is 85 and I am the one she calls for everything, fortunately she is still independent, lives alone, drives ect. We have 3 daughters and 10 grandchildren and another on the way. Pregnant daughter trumps everyone for now because she is high risk and needs me. Everyone else comes after my family, of course. When we are invited to an event I prep and plan to be at my best for the event. I make my dish a day or two in advance or I buy a ready made dish to take. I will only plan 1 or 2 events per week. I have also had to communicate to friends and let them know that my attendance is tentative based on how I feel when the time comes. It's not spontaneous exactly but I enjoy more of my life. As for intimacy, I take care of my husbands needs one way or another, if you get my drift. When I offer to meet his needs we have a great time together. Sending love from Atlanta GA
You have made me aware to not just ask vague "How are you doing?" If I ask I should want to hear the whole ugly truth. Knowing this I would hope I would give you a hug and ask you want I can do to help. And mean it!!
I started watching your channel as a way to learn more about IBD and the challenges it causes because my daughter suffers from it. Surprisingly though, I find I can relate with so many of the things you brought up in this video. I had a different chronic problem (35 years of debilitating migraines) and went through the same kind of social problems. There is always that one person that has to keep poking at you, has to ask 50 questions, never discretely, and makes you feel like you have to do all this explaining. I wish I could tell you that my relationships were maintained. They were not. People stop inviting you to things when you've said no too many times. They lack empathy and tact. The way I look at it, if someone truly cares, they will ask in advance what accommodations you may need, whatever the health issue, to be sure you can be comfortable to attend.
Maggie, your honesty and openness talking about your condition and sharing it with so many people is just amazing. I have a deteriorating spine and although I sill have mobility, it is limited and affects my whole life. I had to change my whole lifestyle and it is exhausting to do the most simple things. I have to plan everything. I find that strangers are often more caring and concerned about my well-being than my family. We need people like you and keep doing what you are doing!! Your husband is an amazing support.
Literally going through the same thing. This is life and I'm so sick of people saying I hope you feel better, you don't look sick, does your stomach hurt. I'm still trying to accept it. My hubby is the same. He's seen the rock bottom. No pun intended. I don't go out anymore, I'm just too tired. I'll never be the same as I was 5 or 6 yrs ago. Love to you
I have fibromyalgia I’m lucky I’ve a great husband married 44 years he’s a Zak just goes with my flow realises when the tiredness is overwhelming the pain too much and takes over the lead hard for him initially as I’m the talker ! You’re right having support from your partner does help from feelings of disappointment for not managing to do things we want never am I ever made feel bad about me
You are such a sweetheart. You have been through so much so just give yourself a break. Spontaneity is not easy for all of us at times. Don't worry or be so hard on yourself, you have a wonderful husband who supports you. It will come back. I also live in PA, near Pittsburgh.
Oh Maggie, I watched your video a couple of days ago and have been pondering on how I would comment. First let me say, I started watching your Vlogs because I have a friend who had colorectal cancer and while she was dealing with chemo and radiation, colon removal and all that encompasses, she found out she also has breast cancer. Her journey has been long and complicated. I often wonder how she stays so positive and deals with every challenge that is presented to her. I think she is a Hero. I would say the same of you. You share your life and experiences in a way that makes others feel more comfortable about learning how Crohn’s disease has affected every part of your life. And that helps others understand. As far as the FOMO or lack being spontaneous, if these are people you care about and who care about you, you might just look them straight in the eye and say something like…… You know, I am so happy to be included and have looked forward to seeing everyone. However, my mind and my body are at odds today. I want to enjoy myself. However, my body is wanting to be a “Party-Pooper” in every sense of the word. So, if I am being quiet or not my normally enjoyable self, I hope you will understand and realize it has absolutely nothing to do with you or this awesome get together. Good luck Maggie.
I too have issues. UC since 2015 went from a mild case to the worst case in a space of 4 years. 2019 got a Ileostomy with a permanent stoma. I have a high output ostomy so empty about 7-10 times a day and that is with medication. Then in 2021 I get blood cancer. So since 2015 my life has been just revolving around doctors appointments, tests and being consistently tired. I can't plan anything because you don't know how you are going to feel that day, I totally get it. As how to fix it, I have not a clue.
I had rectal cancer in 2015 and a permanent colostomy. I also have been diagnosed with a rare blood cancer, Myelodysplastic Syndrome, MDS. The irony is that I’m in remission from the rectal cancer, but now have another one from the treatment I had. My life is never boring. I want to be stress deprived! I know I can’t fix it either. Not having any control over the MDS is very difficult to deal with each day.
I have stage 4 cancer with a very poor prognosis. Each day is different with severe pain, exhaustion, stomach issues and bowel issues. My social time with people other than my family is also unpredictable. If I do go to a social engagement, sometimes I have to leave after an hour. Sometimes I just sit quietly and have very good conversations one on one. Sometimes I have to cancel at last minute. I used to be very bubbly and outgoing, but not anymore and I’m actually very OK with that. I’ve learned to go with the flow and go easy on myself. I am older, 67, and don’t have a partner, so I can feel your frustration with you being young and in love, but I have no answers for that, but your are blessed to have a husband like Zak and just try to go easy on yourself. So many things in life are out of our control, but our response to these situations is always under our control. You are such an inspiration to many, many of us. 💕🌸
Hi Maggie, it is like you are completely mirroring what I feel. On top of the UC, AS now I have been diagnosed with Lupus as well. I used to be the bubbly doll of the party and now I am just so tired all the time. Talking about bedroom issues, because of meds etc I have chronic vanginal infection, which is so painful, but also very frustrating. Thank you so much for making this video, thank you so much for being honest, I really thought I was being stupid for feeling the way I do, seeing that others have the same feeling, make me feel less lonely in this. I have the most awesome, amazing husband, I thank God for him every day. If you have any tips please do make a follow up video, I would love to feel better, for him, he so deserve it Lots of hugs to you and Zak. Happy Valentines day
I am single with an ileostomy so I do not feel the same pressure to attend certain events. But, when I was healthy and married, my husband very much enjoyed going to auto racing events. I was not very interested and had a small child. So, I encouraged him to go alone or with a friend. I didn't have to feel guilty that he was missing out and I was happily at home with my small child. All that to say maybe suggest Zac attend some of these events alone or with a friend. That way you can be comfortable at home and not feel guilty that you are causing him to miss out.
When I had my ostomy my intimacy went downhill and so did my husband’s for fear of “hurting” me. That was back in 2007 and here we are in 2023. I am covered with scars and still feel embarrassed by my body. I apologize for digressing. You are a beautiful young woman and Zack is your lifelong perfect partner. It will be ❤❤❤ always comes first! Love and prayers coming your way!
For the last 4 years this time around it has gone back and forth approximately 2-3 DOZEN times that I have Crohns, not Crohns, Crohns, not Crohns- but on several steroids, Crohns medications, had colon removed 2012, removed a lot of small intestine March 2021, severe pain literally ALL the time, exhausted 24/7… finally got the ball rolling to get the ileostomy in a couple weeks while dealing with non-epileptic seizure disorder, headaches/migraine disorder AND trying to escape from a narcissistic relationship of 6 1/2 years. It’s wonderful that you have such a wonderful person in your life!! I’m sure that is a huge part of everything!! I definitely have lost spontaneity or even enjoy ANYTHING anymore. I hope to learn from all your wonderful videos- THANK YOU!!!
You are so lucky to have Zak. He's so kind. I love watching you two together. I've never had a kind and gentle spouse. I tried 2 times and divorced 2 times. I envy you.
I've lost friends family and a husband of 14 yrs, couldn't handle it, I've been told I'm boring now or you always cancel. BE HONEST. When people ask I tell them flat out but don't want a pity party, I keep it light and try n keep a sense of humor
On the rare occasions I do go to group events where I don't want to be a downer, and they ask how I am, I usually say, "not great, but it's okay." That tells the truth, but also gives them an out to not need to "fix" me. It also gives me an out not to need to detail things I don't want to share. I usually quickly follow up by asking them something about themselves to direct the conversation away from me.
I really needed to hear this. I feel totally the same way, so thank you for sharing because it's hard to admit it to yourself. I'm in the process of having therapy to help overcome this (including physical therapy), and it's scary. It's so reassuring to watch your video and read the comments of others, to know I'm not the only one. We have a great community, and you help bring that together.
I’m glad you told us the real answer. It’s a lot. I have a few minor health issues but they do take a lot of explaining. When I get up from a chair like in a restaurant, I need to stand for awhile before I can walk. I’m so tired of telling everyone to go ahead. They don’t, they wait and then I feel stupid. Ugh. These people all know I have arthritis but they never seem to remember that I can’t do certain things. Kind of frustrating.
My dear girl, I have wrestled forever with this situation. I wish I could adopt you, because you are so honest, real and you have a beautiful soul. I am 56, I have been sick my entire life..if anyone was not cut out to be sick it's me! I see myself in you. I am a Celiac, severe. I am Diabetic, and have horror stories about surgeries. I came to the decision at 6 yrs that throwing up in the bushes at school as soon as I got off the bus because of the oatmeal breakfast that 16:4316:43 somehow food was not my friend. I had terrible asthma that held me back from my first love.. singing and theatre. I just dumped the oatmeal when my Mom couldn't see, and gave my lunch to other kids who were not as fortunate as me. I had a ton of creative talent and it was my fuel until the teen years and I became obsessed with my schoolwork. I took 4 languages, history, English, Theatre class, plus all the others and to survive the days I rarely ate. Once when I was about 8 I was unusually quiet and the teacher asked me if I was ok. I said my tummy hurt.. it did. That resulted in a meeting with my Mom and I with this teacher. She basically asked if there was trouble at home. I looked at my beautiful smart loving dedicated Mom reel from the confrontation! I really learned to be all things to all people..but it was to my detriment. I got good grades, honours, citizen awards, I was in Girl Guides and sang in choir, did theatre and made fun of my other odd things like clumsiness. Always the life of the party. At home I was depleted. I slept a lot, read a lot, and had pneumonia every year and anything the rest of the world had. It was like I had no immune system. I was tested for MS or vestibular problems at 14 because I fell up and down stairs for a year! I went to many specialists..they found nothing remarkable. I went into aerobics, water areobics and weight training and went for my life guard certificate. I thought I was just weak. Fast forward to adulthood.. three kids in three years. The pill did not work. I had sections with each. Lots of body parts removed. I had ovarian cysts kidney infections and stones and they were radio opaque so they never showed on anything, I had adenomyosis and at 30 got that thing out! I always knew it was all part of something bigger. My kids had serious health problems. My one daughter became epileptic after meningitis. She had kidney stones at twelve! So, I lead worship in church, had an active life.. despite it all I was a busy Mom. I also sang in a band. But before I ate I did my day. I was SO hard on myself. Forcing myself to be " normal" whatever that is. Then my epileptic daughter came home because of her health. I was raising a second family she had two young children and just was unable. So it just went like that until 50 and the only way I can describe it is it was like God pulled my legs out from underneath me. I was intolerant to heat, cold, food, life in general. Pain took over. I finally got a diagnosis, Vascular Ehlers Danlos Syndrome, a connective tissue disease. I found you because I had megacolon and it was clear something had to be done or I would rupture. So your wisdoms in hand I had an ileostomy. I wish I had one always the change was
I wish I knew. I have been plagued by all kinds of GI problems my whole life, and the most recent issues with diarrhea after eating have kept me pretty much at home, since I have such a short time to get to the toilet. I'm now 60 and content with staying home, particularly since I have other medical issues (including episodes of sudden paralysis). I admire you for your tenacity and for your openness about IBD and your stoma and the issues you have. I am sure it helps people, especially young people like you. Not everyone will talk about these issues. I also wanted to tell you that you were the most beautiful bride I've ever seen. I think that every time your wedding video pops up. Hugs.
Whilst there might be no immediate answers, I think talking about it openly rather than remaining silent, is very good. By doing this, you are creating education and understanding. There will of course always be some people who may be too wrapped up in their own lives to take in what you say, but others can listen and perhaps learn to be more understanding next time they meet you at a social situation. Your channel is creating education and understanding.
First off, thank you for these latest vlogs. I have had crohns for 33 years. So far your talks have made me feel not so alone. The disease is horrid, not necessarily because of the physical symptoms, but the emotional aspects. I went to a therapist just before my first ostomy surgery. One day I said I was so tired of the “How are u feeling question. This is what she said…. Think of the outside world as guests to your planet. Kind of like visiting Disney world. Let them ride a few rides, buy some souvenirs and at the end of the day pat them on their heads and send them home. They will never truly understand but at least they go home having had a good time. I thought she was nuts until I got that miserable question again. How do I feel? I am tired and sick and am never without pain. But, if I am here to answer your question, that means I am still alive and not hanging out at a hospital with tubes everywhere. Now, go and enjoy the day, I am just going to rest . Because, I am a bit like Disney world. The ups and downs, the strange foods, and somewhere in my intestine I swear there is a mouse wreaking havoc.
So we'll said! I am copying this and saving to my journal to remind myself when I need. My surgeon who performed my life-saving surgery leaving me with ileostomy has reminded me on numerous occasions, when terribly depressed, to myself, raise both thumbs up and repeat, "I am alive".
Acceptance! Accept and don't fight " what is" anymore, just work with it and make sure you have fun adapting to a "new" reality! I hope it helped, I wish you all the best!
Maggie and Zak Happy Valentines day!!! I am in your shoes very tired and leave the house for doctors appointment only...I don't what to say...but you have Zak to take care of you!!! Life changes are hard say no when your not feeling well...its ok to say NO!!! Plus you have a green thumb and you're using it wow !!! Be happy with little things!!! 😊 mags you're the best remember that!!!
I want to cry listening to what you have said in this video. On the other hand, so happy you have Zach in your life. Lastly, I am proud of you bc you are a thinking person who wants to work through and deal with these issues.
i am so appreciative of you and your willingness to offer help, ideas and personal experiences so openly. it's so funny how alone all this can be and how it shapes us. i've always felt like i've lived my life on the perimeter. i truly have felt alone in all this, all my life. i started having symptoms at 12, was diagnosed at 16, and have lived with decades of treatments, surgeries and finally got my ileostomy at 60. believe me when i tell you that i was truly ALONE (much being self induced). i had no idea of the community of ibs folks out there. if i had known of all the support it might have made my journey less isolating. i don't think i'd change things as it has shaped my thoughts and life however, my understanding of all this might have been less painful. thank you for all you do, you are truly making a huge difference in the lives of many !
So far for me (colorectal cancer/colostomy), the only thing that's important are the relationships with your significant other and family. The more they are with you, or you are with people close to you, your anxiety will melt. You're young. As time goes, things like "spontaneity" will manifest in other ways. You've got a good heart. It's all you need.
I used to care what EVERYONE thought about my body and why I have a bag. The question that does bother me is "So why did you get that bag and go through all of your surgeries if you are still so sick?" It truly is a struggle to determine whether they want the truth or something downplayed. As far as "intimacy" goes, I won't go any further until they know that "if you sleep with me, you sleep with my bag". I've decided someone's age doesn't matter as much as their maturity does. This generation has access to so much information, especially medical. I don't really run into people who don't know anything about diseases like Crohn's. Actually most people are interested in my conditions vs. grossed out. Thank you for having this channel and for sharing your private life with us. For those who read this, take care, stay strong and be easy on yourself.
Hi Maggie, I love listening to you, are such an inspiration to me, I have several illnesses and have just been diagnosed with rhumatoid arthritis, which means constant pain and trying to work out the best way forward. I have a very understanding husband who I have been married to for 33 years and totally understands why we can't get intimate and he is fine with that, we still have a whole lot of fun and I try and push forward when I meet up with friends and I speak the truth and they also understand and check in on me from time to time, apologies for the ramble. Anne from Australia
Happy Valentine's Day! You are so fortunate to have a supporting partner. If life turns on its head and I'm expected to go participate, I fast with liquids. Tell them that looks so good when they point at food. If asked how I'm doing, my response is often I've been so busy lately, not elaborating at what, then I switch and ask about them. I'm positive people start feeling bad when you back out. I don't want empathy, I just want to participate. Hope you spoiled each other today.
Thank you for bringing up this sensitive topic. It’s so easy to be self conscious with an Ostomy, and spontaneity becomes a challenge. We need to have more conversations like this one.
Thanks Maggie for always bringing topics to the forefront no matter how difficult it might be. My issues are mentally and less physical but because I had to deal with it my hole life (nearly 35 years) I think I still have a good understanding of what it means to be in constante struggle with a part of yourself that just seems to not want to cooporate. There are different ways I tried but I feel the most helpful for me in social situation was to take the time and really educate people not only about my condition but also how the can help me. Example: Instead of aking me: Are you okay? I told them it helps more to ask: How can I help? Or I see you don't feel well is there anything I can do to make it easier for you? They also know that I don't always want help and when I answer NO they accept it and move on. This works most times now because I have reached a good level of understanding with them. They will always be more accepting and understanding than I am with myself. I still have to work on not beating myself up over everytime I cancel something or missout on a celebration. One way of dealing with it was to have meaningful time with them every chance I get. Calling them when I had a good afternoon to check in on thier lifes or to tell them hey today is a good time to visit me. I know the more I am angry with myself the more I will not be able to be there and do things I want so thats my motivation to give the part that doesn't cooporate real down time and make the most of the time I have energy to live my life.
Your helping so many people!! You and your hubby are perfect together. The love will get you through it all. Dont be to hard on yourself. People that love you are in it for the longhaul. Of course people can sometimes not to be able to relate which makes it awkward and at times you feel judged. I have a bladder condition that has really messed things up for me and most people can't relate and it makes me want to avoid socializing at times. I've adapted but not fully and it's not something I can surgically correct and medicines don't help. I'm alot older than you and use that as an excuse at times. I admire your strength at such a young age!!!!!!
Imo and from what I’ve watched, Zach is amazing, it seems. The love he has for you is evident. He is lucky to have you and the same for the other way around. I wish you two all the best.
I think with people you really care about, being honest once and explain, is enough for people that loves you to be aware that you'll not always be bubbly and spontaneous. With you partner, he's great and there are many romantic stuff you can do to keep the flame alive. You're great! Thanks for sharing.
I can so relate to you on this! I was born with Spina Bifida (in 1966) and was diagnosed with Eosiniphilic Esophagitis about 10 years ago. I have to be careful what I eat when I'm out for fear of "explosions". I end up spending a lot of time in the bathroom when I want to be socializing! I didn't seem to have too many problems in the bedroom when I was married (I have a 16-year-old daughter), or so i thought! My birth defect nor my digestive problems have anything to do with why we are no longer together! That's a whole other can of worms. I have been with someone "new" for 6 years now (come July 20th, his birthday). Like Zak, he just rolls with it. We do have occasional "interruptions", but he just goes with the flow! I love him dearly!
I love honest answers but I also am sympathetic and understand why people either just say they’re okay or give simple answers that don’t tell you how much they are really struggling especially when not in a one on one situation
Thank you Maggie for being “you”.....and sharing your reality including the “bad and the ugly” not just the good, because there are a lot of us who watch the you tube lives of others and end up feeling worse and even more guilty because of this social pressure to be perfect when our bodies and minds are not going to allow us to imitate these insane “performances”.......because it is not reality, and those of us who are ill, no matter what level of severity......we become even more hard on ourselves instead of allowing ourselves some grace and patience. For me, I have had to stop comparing myself to others and stop apologizing for how my illness affects my life......and as soon as I became ill I learned very quickly who my “real” friends were, and had to learn the so called friends I lost was not my fault. It is upsetting to be asked, and especially by people who know you have a severe illness, “how are you”.....so I have decided to answer their question with a question, and ask “do you want the generic answer or the real answer?” It has actually made some people realize how insensitive their question was, and made them think that if they do not want the honest answer do not ask the question! or the “you look good” or you are looking better”.......ummmm, what is dying supposed to look like? Or being in pain etc.? There are many of us who have learned to “fake it” so we do not make those around us feel uncomfortable! All I can suggest is you need to redefine what spontaneity and intimacy looks like for you, and not base it on what the social norms say it is or should be......and if the people in your life cannot get on board with the program you need to make your life function at your optimal best at that moment, because I know each and every day look different for me and what I can or cannot achieve, then those are not the people you need in your life! That may mean you are left with very few, and maybe even less than that, for me most of the time it is just my husband, and he has been my rock for over thirty years, because we both believe in the commitment we made to one another. That does not mean we have been left feeling very much alone in our journey, and everything I have written is easier said than done most of the time, but that is when you take life one moment at a time, and you do your best to keep trying, and not beat yourself up when all you feel you are doing is surviving, but cherish and celebrate the moments you feel you are thriving! Thank you again Maggie for showing me and helping me feel that I am not alone, and being ill does not make me any less of a person who’s needs and wants are just as important.......
It’s now March so I missed this when you posted it. I totally agree with Camille and I would just add: be so grateful you have a mate that you can always go to. Remember your spoonies and you don’t have to make excuses or beat yourself up for changing an event or saying NO . I’m 77 and was very active until a few years ago so I just pray a lot because my Heavenly Father is always there and we don’t need to APOLOGIZE to anyone! God bless you . Your moments for being spontaneous will come and go., only participate in what you can and remember there are many others in the same situation s . They are in it with us we just love and go on. I also have severe O S and Fibromyalgia I hope you will be able to get this to read . I have been so encouraged to watch you and I have learned that if we keep making excuses for our conditions, others won’t respect us so respect yourself.
As someone with a social disability, who is paranoid about people reacting weird: It depends on the person, but I'll usually start with the basic/socially acceptable answer and see how they do. The closer I get to someone, the more honest I am, and I might even tell them, "The more comfortable I become with you, the more you'll see it come out." I can usually tell the difference between when and who wants the basic answer, and when they can handle the real one. And from the other side, I would feel bad if I knew someone was pushing through being miserable because they didn't want to disappoint me! It'll be fine with the right people.
Suggested responses to, "How are you?": Well enough, thanks (with a smile if you can manage it); Looking forward to a better tomorrow, thanks (then they can ask for details, or not) I'm happy to be here, thanks - how are you? Honestly, it's been a rough day, but I am so glad to see you! I also suggest you give yourself a break. Take something from the deli to parties, that perhaps Zak can pick up. You can transfer whatever into your own dishes. Call the deli ahead and ask what's available. Secondly, arrange a signal with Zak ahead of time, and then leave early. The most important things are that you showed up, with a contribution to the table. If pressed to say why, that is the time for honesty: Sorry, my colostomy's calling!
This is long.. so sorry! It was a radical difference! I could eat, move, everything was so much better..but now the hernia is tearing, it will always be something. VEDS is a rare horrific disease. The things that helped me in social settings was my sense of humour. People are weird about chronic health issues. I have had more bad uninformed stuff thrown at me. I simply say, hmm I will have to look into that.. can you write that doctor's name down? Reiki is good for irritable bowel? I tried it all! I had an epiphany one day that I literally was lying through my teeth just to placate everyone else! Now I say as little as possible, if people ask me if I have eaten I say no, I was having a great chat..maybe in a bit. My husband is just like Zak... calm cool collective, but he is on it if I get sick! As you grow old together this thing happens where you learn to say no.. to others so you can be together more...intimacy can be so much more than you think as long as you talk, be honest, and our premarital counsellor said 15 minutes of holding each other at night keeps a relationship steady.. I did it, but not til lately did I fully understand.. to be intimate when you are chronic requires a LOT of trust! It begins with 15 minutes of holding. If you keep at it, it's easier to share what's holding you back, and the conversation starts.. this hurts, I'm tired, frustrated, sad.. and you. begin to reroute those things that hold you back. There then starts new ways to be intimate, to close the door to the world and just BE! You do so many selfless things you are hard on yourself like I am! Zak is your true north.. trust him. My husband still makes my knees weak after 38 years..if you just work at staying close it will come back... maybe not the same as before, but it's better because the truth is there and it's not an obstacle, but the vehicle to make a new love language, just as fulfilling and maybe more special than the normal people have! I would never say so much, but I see your struggles and your strength is such a miracle! Be encouraged, because you have each other forever and love stories have no end! I hope this didn't come off weird, but sickness causes a lot of relationship problems and I love the way you two are together! 😊❤
This was such a touching and helpful response! My daughter suffers from EDS (but not VEDS), and all the comorbidities that go along with it can really drag one down-the migraines, subluxing joints, gastro issues, chronic pain everywhere...it's a horrible disease. The issue of trying to be social when you just don't feel well, is a real obstacle. Thank you for your honesty.
I've been having a rough week and just now hearing you speak out about how you feel in those situations made me feel somewhat better. I already have a medical problem that I want get in to but I'm fairly new with my stoma. I love hearing you talk about all topics and you were literally the first person I came across here on TH-cam and you have a great way of speaking that helps me deal with my situation better. Thanks and have a great day.
I have to say, I love when people do what some would call "overshare". If I ask if you're ok, I'm ready for a real answer. I only have time for truth these days, no matter what that looks like. Thank you for sharing, the internet can be tough so I appreciate you.
I completely relate! I don't have a solution for every part, but I do have a couple thoughts. 1) exploit the spontaneity you do have: having a relatively good day?...drop your every day plans and do something fun. You may not be able to be spontaneous when you get the invite, but maybe you can do the inviting when you do feel good. The old "make hay while the sun shines" adage. 2) Conditions are rarely perfect in real life, even less so with illness. When your body/mood allows, go ahead anyway with expectations that match what you've got to give in that moment. I like to say, I give all I've got, but some days I've got more to give than others. 3) if the relationships breakdown, let them. I've learned a lot about quality over quantity in that department, and quality wins every time. The friends that truly love you will go out of their way to be with you in whatever way they can. 4) some of that loss of spontaneity is part of the stage of life you are in. In addition to what your illness adds, there's a natural decline. For me, it took my friends having children before they lacked spontaneity (now I sometimes get annoyed when they have to find a sitter first 😉). As I said, the best of friends will be happy to extend grace and also ask for it, and you just take turns being there for each other. 5) Lastly, when people ask how you ate doing, maybe you can just say "today's not such a great day physically, but I want to be here so I'm going to enjoy what I can even if I need to be a little quieter today.". If they ask for details you can decide to share based on each individual, but you don't owe anyone an explanation. Sometimes I feel better if I just say that quietly to the host so they know I am glad to see them. I might add " I'm really glad you invited me and I can be myself around you." But I no longer apologize for not being my best self. After all, they are not inviting you to preform. They love you and just want to include you ( at least the ones worth keeping).
My life (after a life of prob but nothing major I was still living life) crashed 5 years ago and I've become perm l and disabled with symptoms. I get how you feel Maggie but I think because you didn't have an adult life without crohns and because you're a conscientious good decent person, you fe you have to justify yourself and your illnesses and you don't. You have the same worth as pre illness, the same worth with or without being extraverted and sociable at an event. You're sensitive warm caring have values integrity and I know who I'd want in my corner, not the loudest at a party.... I'd want someone just like you. Trust yourself, don't push yourself..... you are spontaneous all these videos, your whole life!! My goodness you've already done so much more than most ✌
GREt video. At 37 overnight I became chronically sick. Now, at 44, for the last 7 years I have to tell everyone… I may have to cancel that day. I have to take extra insurance any time I travel just in case… but I have no spontaneity left in my life. I have a rare kidney disease. I d been in the hospital over 700 days since 2016. (Mostly 2016-2019). I get chemo even though I don’t have cancer, to Treat. I really felt it deeply when you said I don’t want to go to restaurants. 💯. I have been to maybe 2-3 dinners out since 2016
Happy Valentine’s Day Maggie! Thanks for sharing this video with us❤️ im sure most of us here can relate 😢 I’ve had UC for about 10 years now.. I met my fiancé when I was recently diagnosed and he’s been there for me since day 1. I had a total colectomy & ileostomy reversal (jpouch now) and I’m feeling great! My fiancé & I are able to do more now that I’m feeling healthy 😇
Happy Valentines Day! I am sick also but different from yours but I end up with the same symptoms. I always end up wondering if I am just depressed. But I don’t feel depressed most of the time but those odd moments…i just can’t quite swing life and be my jovial self. I have a friend who always says I don’t let anything get me down but she isn’t sick and doesn’t know what I am feeling. She hurts my feelings. Just be yourself Maggie and don’t worry too much about how others are feeling or thinking about you. You just can’t change any of it. Have a great evening.
Maggie, don’t make this harder than it needs to be. You for you being you is never a “buzz kill” to a group. It’s OK to say you have life altering IBD, and some days and times are more of a struggle. That’s being yourself and being honest. Remember, the truth needs no defense. If they don’t know what IBD is, this is opportunity to teach by just being your true self, and your own experiences. If that is unacceptable to others, remember, that is their choice. For your true friends and family, you *need* that love and support, for we all get by with a little help.. from our friends…
Um…Don’t overthink this. The overthink part has another name: Generalized Social Anxiety… The real help to self is to work on that. Discuss this with your mental health pro. Make it a functional priority. Also Maggie not mentioned but I pickup, is the heavy cost, to *all* of you, in everyway, is the fuss with the barn. That too has a social price. So doing back to The anxiety part, it is likely easier to improve the anxiety part, and way sooner, than the barn fuss. But if you do it, you also improve the barn fuss anxiety. Think of it as a two for one deal.
I have Ulcerative Colitis/Ostomy and I am brutal honest with people about where I'm at with my illness. Maybe it isn't always easy and maybe it isn't always "polite" but I decided from day one this is me and this is how I come, with issues. No I'm not okay but I'm here and I'm trying to be apart of it all and that's okay so let's move on from me x
I've read many interesting comments here. A lot of people make a good point that intimacy is much more than sexual intimacy with someone you care for. Even without illnesses, we all have bodies that breakdown eventually! Sometimes it is just a simple matter of not being able to do something at the time. I also think in those moments where we feel better, we should embrace that and put on a nice outfit or whatever makes you feel good about yourself and indulge in that moment. Easier said than done but we can only do our best with what we have in terms of the issues in our lives.
This is when I am thankful I did smoke for so many years! I can't imagine at your age going through this for a lifetime. Zak loves you and understands just tell him, come up with a "code word" and use it!! My husband and I have one for when I am ready to leave somewhere. I just nod and he knows anymore.
I can relate to every part of what you said. I was diagnosed with mild UC in 2014 that progressively got worse up until 2018, I was hospitalized for a total of 29 days after the stillbirth of our daughter. It had progressed to my entire colon at that point. They talked about removing my colon then but wanted to start me on remicade to see if it would help first. It was the first and only medication to put me in remission and I did good for a while until my insurance stopped covering it in 2021. They were making me jump through hoops to try to get it and literally made it impossible. I even called state representatives and the state insurance commissioner without much progress. I quickly had my second worst flare that landed me back into the hospital for another 30 days total. They tried me on entyvio, two doses one week apart and it didn’t touch it. I had to have my colon removed and now live with my permanent ilesostomy. It was hard trying to go places (pre-ostomy) and if I brought my own food that I knew I could eat or if I didn’t eat I would get comments like “oh, you don’t wanna eat any of this ? There’s nothing here you like? What do you eat ? I’d die if I only ate so little !” Well, quite literally I was dying and I literally couldn’t eat, it just kept making me rapidly sicker. I hated going places and I actually cried at restaurants a couple times because of the stress of having to order so specifically and then having to send it back to be corrected and feeling like you’re “a problem” and just wanting to leave as fast as possible. I’m thankful now that I can, for the most part, enjoy myself again with some limitations but nowhere near as much as I used to have. I still have to be careful with what I eat sometimes and make sure I drink plenty and have a lot of confidence issues but this channel makes me feel like I’m not alone !
Former waitress here. Don't ever feel bad about needing something specific, even if it's not exactly the dish on the menu. And, don't feel bad or embarrassed if you need to send something back. The staff know that you are paying for it. If your dining companions complain, say, "Yeah, it sucks being me." And then consider if you want their company in the future!
Firstly thanks for sharing your “disease” with us. You are very brave. I think you should tell close friends and family how you are really feeling - yes really. You have to be honest with your loved ones and if they are truly loved ones they will understand. If they don’t understand ask them “so why did you ask how I am”. You sound like an up front person and this video is great for Valentines Day ❤
Maggie you have to put yourself first. I’m guessing most of your friends know your situation. I was diagnosed 4 yrs ago with Sjogrens, fibromyalgia, and OA. There hasn’t been a day that I don’t feel like staying in bed for the rest of my life. I’ve also had spine surgery which didn’t work, I have 10 screws, 2 rods and a plate in my back. I am now going for RFA. My hubby like yours, fights for me, he never forces me to have relations, go to parties, etc. I can’t feel bad missing out, I have to take care of me with any time I have left. Meds help but most cause other problems, most people just say, well you have to get out, go for walks, just do it. If I could just do it, I would! I also had my rat knee replaced last year. I’m going to be 72 in July and married for 50 yrs in May. I have 2 sons, one currently not speaking to us, neither is his wife. The younger one has the most adorable 4 1/2 son and we get to see, re: FT. We just adopted a cat and she is the love of my life, she is now my therapy cat, she just doesn’t know it yet! I often wonder what people really think but I beginning not to care. I also can’t cry anymore, thanks to sjogrens. Please take care of you first, if they are your friends they will understand your feelings and call to see how you are doing and if they can help. No college here, hopefully just a big heart, which you have. Talk to Zak a lot and let him know how you are really feeling. Please take care
@5:19 So true. At 55 chronic illness has been an invisible companion for prob half my life. For too many it’s from birth. Normal for those in same boat to hibernate unless very small gatherings. For those who live in a building it’s harder but learn to run to cope. You’ll learn most others have their own issues at any given time and talk at not with you. You don’t owe any an explanation and very OK to deflect with I’m tired or fine etc. BUT pls ask for help if /when needed. Peace and health.
Hey there, New subscriber.... Your topics a you cover are RIGHT on point with concerns,challenges to chronic illness. I had a question if you do not mind... how do you maintain a good weight with chronic illness. I have Intractable pain with my illness, unfortunately, and my appetite really suffers. Do you have ANy food recommendation or different methods or ways to help this♡ You are so inspiring, have a wonderful way of dealing with everything! I see so much strength in you! Thank you for sharing with us! Love and light
Thank you Maggie for being so transparent. Telling us what answer you really wanted to give gave some humor to this serious topic! I have some health issues that prevent me from being spontaneous and eating all the foods I used to enjoy. I do miss a lot of events, but when I go I eat very selective and very little. People think I want to be as thin as I am and that makes me want to scream! I would love to eat all the foods and ice cream for dessert, but my stomach would be messed up for days!
Hi, I don't have the same medical condition but started watching your videos to educate myself. Thank you for your honesty! My suggestion would be to prepare a simple dish to share vs several to preserve your energy. I appreciate your kindness to want to bring several dishes though! Give yourself grace since you also had surgery recently, you may need additional time for your body to adjust. I've been in cancer treatment again, it returned in 2017, and I had a complete hysterectomy and have monthly injections in the muscles in both hips to keep my hormones levels low. I noticed feeling tired for a few days following the injections, so I just take it easy. I do what I need to do to for me! I am not in a relationship now but I do know that you and Zack are blessed with one another. So empty your bag when you need to and enjoy your husband!! Happy Valentine's Day to you and Zack💖
I have severe bipolar and I feel the same way you do even though I have a psychiatric disability, not a physical one. Sometimes I have crying spells where I can’t get out of an emotional funk. I stopped making plans bc I never know what mood I’ll be in when I wake up and my moods are INTENSE. Sometimes my wife wants to get intimate with me and I immediately turn her down bc I am in such a depressed mood. She sometimes takes offense bc it seems like I am rejecting her, but it’s really due to my mental illness.
I get it. Last year started having health issues. I had no energy just wanted to lie down constantly, experienced muscle weakness, talking was an effort so barely talked to anyone, had lungs issues, etc……Finally went to doctor a year later and found autoimmune issues for which im on different medication for. I also lost three family members in a 10 month span while my health was declining and it was horrible. I’m better but I still have my bad days and never know how I will feel from one day to the next. It makes it very difficult to plan anything. These days though I just have to say no to a lot of things. Last month my friends daughter died and I planned to stay overnight in an Airbnb out of state to attend the wake and possibly the funeral. Of course the day I was to leave I felt horrible, nauseous, tired, dizziness, etc….I almost turned around and went back home. It was Horrible timing but I ate something and started feeling better later in the day. I figured worst comes to worst I attend the wake for a short period of time if I don’t feel good and then go back to the Airbnb. As it turned out I was ok and lasted through the whole thing. I then wasn’t sure about attending the funeral the next day but then my friend brought it up at the wake and said your going tomorrow right? I couldn’t say no. I attended the late afternoon funeral the next day. I’m glad I was there for my friend but it made me think that maybe I should have done just one and not both functions. It’s horrible but these days if I can’t attend something due to my health I just can’t do it anymore and pressure myself.
Maggie, so many things can kill spontaneity even for totally healthy people. One that comes to mind is when you have a newborn (especially the first one). Many won't admit this but the fatigue, sleepless nights, stress, changed body (real or perceived) etc. can all affect you like a chronic illness as described and can affect relationships. Instead of a fun night out on the town with friends, a new mom may want to stay in and sleep because a 2 AM and 5 AM feeding is coming. Stressful jobs can also kill spontaneity. The only way to make it through is a supportive partner and acceptance. All of us slow down and change with age and none are as we were in college. Although sometimes easier said than done, remind yourself of the good you have and stay grateful.
It really bothers me when I'm with several friends or family members and even though they all know I have a GI disorder somebody asks: "Why don't you eat? don't you like the food? why don't you drink anything? don't you feel well? why are you so quiet?". In the past I felt ashamed and didn't know how to hide the fact that I don't feel well, I made up various reasons, but now it gets on my nerves when I hear this questions. So if I know I won't feel physically well to meet and have fun with people , I don't go anymore! Yeah, not a great way to deal with that, maybe I become too sensitive over time..
Like you, I am so thankful to have an understanding and patient husband. I sometimes ask myself how would I feel/react if my husband/partner or a friend/family member needed to make arrangements in advance, cancel at the last minute, be able to only have a very short visit or change venues because of access issues? Would you roll your eyes and think "not again", "ugh I liked them so much better before they got sick" or "I'm going to stop asking them out as it's always a drama"? No? It's exactly the same for them. I would continue to love them and be happy to make some changes to accommodate them. I bet that's exactly how Zach, your family and friends feel about you. ❤ Mel xx
I love your tribute to your wonderful husband. Hopefully one day I'll find someone like him. I can relate to your experience so much. I don't have what is classified as chronic illness. But when my fluid balance is disturbed, my kidney acts up, my digestion goes wayward and that affects my energy levels. And I just want to take some painkillers and go to sleep. I can deal with one thing, but it's the sum of it all that just wipes me out. So to answer your question, the only one I can disappoint is myself. So if I don't feel good, I don't go to gatherings. Because I'm not going to have a good time and people will notice that. Real friends will have the patience and caring to stick it out with you. And yes, that does mean I don't have a lot of friends. But the ones I do have are precious.
Thanks for this video and getting this out there , can totally relate to feeling this way, hope you , Zac and the doggies had a lovely valentine's day xx
Funniest thing is that I kept being told, "Be honest with us.", "That's what friends are for. " Then, when you finally explain, they are dumbfounded and don't have any idea what to say. My experience of being honest has caused loss of friendships. Even more than if I just stay home and don't do anything. Hugs to everyone experiencing a chronic illness. Remember, you're not alone.
It is a good Valentine video.
Because this is about REAL LIFE and Real LOVE of a real couple.
I've had fibromyalgia and ulcerative colitis for around 5 years at this point. I've learned that if there is an event I want to go to I have to make 3 tiers of being able to go: 1. Basic, just turn up even if not feeling the best 2. Feeling okay, maybe bring a pre-made dish or a soft drink or 3. Feeling great, made a dish day of and able to mingle wholeheartedly.
Your friends want you there because they love you. Don't over pressure yourself with expectations of "I should make this or bring this or do that." If your friends are good people, they are going to be happy you showed up because it shows that you value them in your limited energy allotment.
And don't be afraid to be honest. Carry around an info card if you're really tired that says all the reasons you might be low energy but still there. Life is messy. Chronic illnesses suck. But at the end of the day we are still people who want to have friends and do things, same as anyone else.
yes!! my friends and i dont even have to invent excuses if one of us doesnt feel good even mentally they will say "you know lets rearrange i do not feel up to it" and either we do or we talk about whats going on. And we dont have to perform anything ...we are FRIENDS. Love your post!
I have had UC since I was 11 years old. I got used to the symptoms, no one felt sorry for me ever so why feel sorry for myself? I am one tough cookie now on remission fir 20 years. Now and then I have a flare, once was hospitalized after a week long bout if Diarra about 15 years ago, dehydrated and the small and large intestine telescopes and blocked my intestines. Thought I was destined for surgery
I didn't have surgery though, steroids worked and nothing by mouth for two days.
I can definitely relate! Your explanation of "I'm tired" had me cracking up though. I thought of the saying, "Those who mind don't matter and those who matter don't mind." I want friends that I can be myself around; faking it takes too much of my precious energy. That doesn't mean people always need to know every detail of my health, but if I'm really struggling I want to feel comfortable expressing that, spending more time with people I feel safe expressing that with. Loss of spontaneity is something I grieve at times, but chronic illness has taught me a lot of compassion, to be grateful for the little things and what I CAN do. For example, I can't always spend an entire day out or be super active, but you can bet I'll be texting you to check in or encourage you and crocheting you a blanket! lol It's been a good tool to weed out fake friends too
I have felt this way my entire life.. I have IBS and always tummy issues… and migraines …. The migraines and tummy issues are related . So we married at 19 we are 71.. and the truth is that sometimes doing the get together are exhausting! Say no…. It is ok to say no…I didn’t get to this point easily we have had and still have a lot of things that happen. We have two dogs one is over 14 the other is over 10. We cannot leave for long periods of time or the 14 will have an accident… Life keeps presenting situations that challenge..know what is truly good for you.. and do that and thrive♥️♥️
IBS here too. It took years for certain kin to really understood when it came to eating certain things,no means no. I do not care what others think and just do what is best for me.
Same!!
Same
You are a very brave strong human being. Your my role model for life lessons
This is tough for me to answer as someone with a physical disability that does impact my going to the rest room. It's always bothered me more how people respond rather than any thought on my part. All that said being incontinent allows there to be set times when I go to the restroom. As far as a partner relationship I am not in one and would never consider being in one with anyone who couldn't handle my reality or expected payment for handling it. When out and about what's most difficult is a standard restroom with one potty one sink and people waiting if I'm the one in there.
I've gotten questions like what took you so long or you should be like or do such and such. I think the hardest part is when choosing to attend something that ends up being several hours, but falls between my potty schedule, is when people notice I haven't gone and offer to take me, even barely knowing me, unaware of what's really involved.
Those things make it harder so id just rather people not ask questions or offer help.
I thrive on consistency and regularity being spontaneous generally gives me anxiety. But if people genuinely want me around they better take into consideration all that entails or I really want no part of it.
I got my ileostomy ten years ago. I’ve not had intercourse with my husband since then. He is such a loving, caring and supportive person and I can count myself lucky. Seriously. Although I can talk to him about every problem or detail regarding my stoma, he’s obviously not physically attracted to me anymore. I’m sure that the fact that I myself am so unhappy with the situation does also influence him. Bottom line is, we used to have an incredible sex life. No other partner before him actually made me want to be intimate every day. It’s therefore even more painful to have lost that intimacy. We are both in our early 50s and I think it’s just too early to give up on all the fun. It makes me really sad.
The other aspect of having lost general spontaneity is also something I completely understand. You don’t want to be the “party pooper”, but sometimes it feels like all the life has been sucked out of you and all you can do is be present but not active. Basically surviving. And it’s completely impossible to make others understand how much things add up and culminate into a “tired” person. It makes me feel lonely. I want to be there but I don’t want to bring down the atmosphere with my tiredness or even worse, my horrendous explanations.
Honestly Maggie if I had the answer I would love to let everyone like this know😞 I’m the worst person to depend on, to show up for anything and if I actually do show up the fear of being sick is just as bad as being sick. I never eat when I’m out and I feel like all I do is disappoint people. Forget about sex😳 however I’m 55 and things with me didn’t get bad until I was in my forties so I was able to be a functioning mom for the majority of my kids growing up❤️ and I’m very thankful for that. I want to get better so I can have a bit of a life before it’s gone but I have to come to terms with the possibility that this is just the way it’s going to be and I pray it doesn’t get any worse 🤞🤞I have recently started to paint and that helps a lot with what’s going on mentally ❤️🌹 I hope you had a nice Valentine’s Day 🤞✌️
I can relate! I'm an incomplete paraplegic. I also have bowel issues. I'm in my chair most often. I can walk a very short distance. Anyway, I so often experience the same feelings. I'm 67 yrs old and was 46 at the time of my accident. And also I have severe hearing loss. I try to have fun and enjoy things with my husband also. But really those times are becoming fewer as time goes on. I have finally decided that if I'm not comfortable being around other people, then I just need to say NO I don't think I'd like to go. While being around other people doesn't really bring me a lot of joy, I've had to learn to do the things that do bring me joy. At my age, staying home, reading books, doing crafts, and sewing. And spending time with family is my idea of a great time. Intimacy is pretty much an old stranger to us. But we survive. You have your videos, which by the way have been very therapeutic to me. I've also come to realize we are not alone. Every person we meet probably has something they too are struggling with. Our normal may be different than the next person's. But hey, their normal is in some way very odd as well. Therapy has helped me, but I have a long way to go.
It is incredibly validating to hear you discuss these very relatable issues!! Losing spontaneity, fear of missing out, etc... I hope it is ok that I vent a bit here.The part where you shared things "you would have said" instead of saying you are tired had me in tears. That is EXACTLY what I have go through my mind when anyone asks how I am, why I am not eating, why I am quiet, why I didn't attend whatever, etc... I hate the small talk "how are you?" I am an honest person who now feels forced to lie. A healthy person can't truly understand how much thought and energy goes into basic daily life with a debilitating chronic condition. I was lucky I went through a few years of feeling ok, of being able to manage my digestive health issues well enough to build a career, enter a great committed relationship, develop friendships, etc...When my health started to decline again though 9 years ago everything I had built up started to fall apart. First I had to leave my career, then social commitments/volunteer work, then friends disappeared... When after another 2.5 years my health continued to decline my 4 year long committed relationship collapsed. He went from compassionate and supportive to resentful, from open to shut down, from loving to demeaning. I could not tolerate the hatefulness, so I was the one to leave. I am happier sick & alone than I was sick & with someone who blamed their unhappiness on my illness. It is exhausting though.
Happy Valentine's Day. I've experienced the same feelings and emotions. I was diagnosed with ulcerative Colitis in 2019 and I also had several strokes which put me in a wheelchair. Definitely a game changer. I've had to adapt and adjust.
Since I was diagnosed with Crohn's about 5 years ago a lot of things had to change. What I did to relieve my frustration with losing spontaneity was a bit of compromise. First, I prioritized the people in my life, for example, my husband gets first dibs on my energy. When I'm having a good day I do something just for him, make him a special meal or dessert, I offer to scratch his back to make him feel special. My Mom trumps my husband if she needs me, she is 85 and I am the one she calls for everything, fortunately she is still independent, lives alone, drives ect. We have 3 daughters and 10 grandchildren and another on the way. Pregnant daughter trumps everyone for now because she is high risk and needs me. Everyone else comes after my family, of course. When we are invited to an event I prep and plan to be at my best for the event. I make my dish a day or two in advance or I buy a ready made dish to take. I will only plan 1 or 2 events per week. I have also had to communicate to friends and let them know that my attendance is tentative based on how I feel when the time comes. It's not spontaneous exactly but I enjoy more of my life. As for intimacy, I take care of my husbands needs one way or another, if you get my drift. When I offer to meet his needs we have a great time together. Sending love from Atlanta GA
You have made me aware to not just ask vague "How are you doing?" If I ask I should want to hear the whole ugly truth. Knowing this I would hope I would give you a hug and ask you want I can do to help. And mean it!!
I started watching your channel as a way to learn more about IBD and the challenges it causes because my daughter suffers from it. Surprisingly though, I find I can relate with so many of the things you brought up in this video. I had a different chronic problem (35 years of debilitating migraines) and went through the same kind of social problems. There is always that one person that has to keep poking at you, has to ask 50 questions, never discretely, and makes you feel like you have to do all this explaining. I wish I could tell you that my relationships were maintained. They were not. People stop inviting you to things when you've said no too many times. They lack empathy and tact. The way I look at it, if someone truly cares, they will ask in advance what accommodations you may need, whatever the health issue, to be sure you can be comfortable to attend.
Maggie, thank you...and you are singing my tune. I'm am so grateful for an understanding and very patient husband.
Maggie, your honesty and openness talking about your condition and sharing it with so many people is just amazing. I have a deteriorating spine and although I sill have mobility, it is limited and affects my whole life. I had to change my whole lifestyle and it is exhausting to do the most simple things. I have to plan everything. I find that strangers are often more caring and concerned about my well-being than my family. We need people like you and keep doing what you are doing!! Your husband is an amazing support.
Literally going through the same thing. This is life and I'm so sick of people saying I hope you feel better, you don't look sick, does your stomach hurt. I'm still trying to accept it. My hubby is the same. He's seen the rock bottom. No pun intended. I don't go out anymore, I'm just too tired. I'll never be the same as I was 5 or 6 yrs ago. Love to you
I have fibromyalgia I’m lucky I’ve a great husband married 44 years he’s a Zak just goes with my flow realises when the tiredness is overwhelming the pain too much and takes over the lead hard for him initially as I’m the talker ! You’re right having support from your partner does help from feelings of disappointment for not managing to do things we want never am I ever made feel bad about me
You are such a sweetheart. You have been through so much so just give yourself a break. Spontaneity is not easy for all of us at times. Don't worry or be so hard on yourself, you have a wonderful husband who supports you. It will come back. I also live in PA, near Pittsburgh.
Oh Maggie, I watched your video a couple of days ago and have been pondering on how I would comment. First let me say, I started watching your Vlogs because I have a friend who had colorectal cancer and while she was dealing with chemo and radiation, colon removal and all that encompasses, she found out she also has breast cancer. Her journey has been long and complicated. I often wonder how she stays so positive and deals with every challenge that is presented to her. I think she is a Hero. I would say the same of you. You share your life and experiences in a way that makes others feel more comfortable about learning how Crohn’s disease has affected every part of your life. And that helps others understand.
As far as the FOMO or lack being spontaneous, if these are people you care about and who care about you, you might just look them straight in the eye and say something like……
You know, I am so happy to be included and have looked forward to seeing everyone. However, my mind and my body are at odds today. I want to enjoy myself. However, my body is wanting to be a “Party-Pooper” in every sense of the word. So, if I am being quiet or not my normally enjoyable self, I hope you will understand and realize it has absolutely nothing to do with you or this awesome get together.
Good luck Maggie.
I too have issues. UC since 2015 went from a mild case to the worst case in a space of 4 years. 2019 got a Ileostomy with a permanent stoma. I have a high output ostomy so empty about 7-10 times a day and that is with medication. Then in 2021 I get blood cancer. So since 2015 my life has been just revolving around doctors appointments, tests and being consistently tired. I can't plan anything because you don't know how you are going to feel that day, I totally get it. As how to fix it, I have not a clue.
I had rectal cancer in 2015 and a permanent colostomy. I also have been diagnosed with a rare blood cancer, Myelodysplastic Syndrome, MDS. The irony is that I’m in remission from the rectal cancer, but now have another one from the treatment I had. My life is never boring. I want to be stress deprived! I know I can’t fix it either. Not having any control over the MDS is very difficult to deal with each day.
I have stage 4 cancer with a very poor prognosis. Each day is different with severe pain, exhaustion, stomach issues and bowel issues. My social time with people other than my family is also unpredictable. If I do go to a social engagement, sometimes I have to leave after an hour. Sometimes I just sit quietly and have very good conversations one on one. Sometimes I have to cancel at last minute. I used to be very bubbly and outgoing, but not anymore and I’m actually very OK with that. I’ve learned to go with the flow and go easy on myself. I am older, 67, and don’t have a partner, so I can feel your frustration with you being young and in love, but I have no answers for that, but your are blessed to have a husband like Zak and just try to go easy on yourself. So many things in life are out of our control, but our response to these situations is always under our control. You are such an inspiration to many, many of us. 💕🌸
Hi Maggie, it is like you are completely mirroring what I feel. On top of the UC, AS now I have been diagnosed with Lupus as well.
I used to be the bubbly doll of the party and now I am just so tired all the time.
Talking about bedroom issues, because of meds etc I have chronic vanginal infection, which is so painful, but also very frustrating.
Thank you so much for making this video, thank you so much for being honest, I really thought I was being stupid for feeling the way I do, seeing that others have the same feeling, make me feel less lonely in this.
I have the most awesome, amazing husband, I thank God for him every day. If you have any tips please do make a follow up video, I would love to feel better, for him, he so deserve it
Lots of hugs to you and Zak. Happy Valentines day
I am single with an ileostomy so I do not feel the same pressure to attend certain events. But, when I was healthy and married, my husband very much enjoyed going to auto racing events. I was not very interested and had a small child. So, I encouraged him to go alone or with a friend. I didn't have to feel guilty that he was missing out and I was happily at home with my small child. All that to say maybe suggest Zac attend some of these events alone or with a friend. That way you can be comfortable at home and not feel guilty that you are causing him to miss out.
When I had my ostomy my intimacy went downhill and so did my husband’s for fear of “hurting” me. That was back in 2007 and here we are in 2023. I am covered with scars and still feel embarrassed by my body. I apologize for digressing. You are a beautiful young woman and Zack is your lifelong perfect partner. It will be ❤❤❤ always comes first! Love and prayers coming your way!
For the last 4 years this time around it has gone back and forth approximately 2-3 DOZEN times that I have Crohns, not Crohns, Crohns, not Crohns- but on several steroids, Crohns medications, had colon removed 2012, removed a lot of small intestine March 2021, severe pain literally ALL the time, exhausted 24/7… finally got the ball rolling to get the ileostomy in a couple weeks while dealing with non-epileptic seizure disorder, headaches/migraine disorder AND trying to escape from a narcissistic relationship of 6 1/2 years. It’s wonderful that you have such a wonderful person in your life!! I’m sure that is a huge part of everything!! I definitely have lost spontaneity or even enjoy ANYTHING anymore. I hope to learn from all your wonderful videos- THANK YOU!!!
You are so lucky to have Zak. He's so kind. I love watching you two together. I've never had a kind and gentle spouse. I tried 2 times and divorced 2 times. I envy you.
I've lost friends family and a husband of 14 yrs, couldn't handle it, I've been told I'm boring now or you always cancel. BE HONEST. When people ask I tell them flat out but don't want a pity party, I keep it light and try n keep a sense of humor
Tell them they are the boring ones for always bragging about things.
@K That's a good one.
On the rare occasions I do go to group events where I don't want to be a downer, and they ask how I am, I usually say, "not great, but it's okay." That tells the truth, but also gives them an out to not need to "fix" me. It also gives me an out not to need to detail things I don't want to share. I usually quickly follow up by asking them something about themselves to direct the conversation away from me.
I really needed to hear this. I feel totally the same way, so thank you for sharing because it's hard to admit it to yourself. I'm in the process of having therapy to help overcome this (including physical therapy), and it's scary. It's so reassuring to watch your video and read the comments of others, to know I'm not the only one. We have a great community, and you help bring that together.
I’m glad you told us the real answer. It’s a lot. I have a few minor health issues but they do take a lot of explaining. When I get up from a chair like in a restaurant, I need to stand for awhile before I can walk. I’m so tired of telling everyone to go ahead. They don’t, they wait and then I feel stupid. Ugh.
These people all know I have arthritis but they never seem to remember that I can’t do certain things. Kind of frustrating.
Happy Valentine's day to you and Zak ! 🌹❤️
Zak sounds lovely for you!
My dear girl, I have wrestled forever with this situation. I wish I could adopt you, because you are so honest, real and you have a beautiful soul. I am 56, I have been sick my entire life..if anyone was not cut out to be sick it's me! I see myself in you. I am a Celiac, severe. I am Diabetic, and have horror stories about surgeries. I came to the decision at 6 yrs that throwing up in the bushes at school as soon as I got off the bus because of the oatmeal breakfast that 16:43 16:43 somehow food was not my friend. I had terrible asthma that held me back from my first love.. singing and theatre. I just dumped the oatmeal when my Mom couldn't see, and gave my lunch to other kids who were not as fortunate as me. I had a ton of creative talent and it was my fuel until the teen years and I became obsessed with my schoolwork. I took 4 languages, history, English, Theatre class, plus all the others and to survive the days I rarely ate. Once when I was about 8 I was unusually quiet and the teacher asked me if I was ok. I said my tummy hurt.. it did. That resulted in a meeting with my Mom and I with this teacher. She basically asked if there was trouble at home. I looked at my beautiful smart loving dedicated Mom reel from the confrontation! I really learned to be all things to all people..but it was to my detriment. I got good grades, honours, citizen awards, I was in Girl Guides and sang in choir, did theatre and made fun of my other odd things like clumsiness. Always the life of the party. At home I was depleted. I slept a lot, read a lot, and had pneumonia every year and anything the rest of the world had. It was like I had no immune system. I was tested for MS or vestibular problems at 14 because I fell up and down stairs for a year! I went to many specialists..they found nothing remarkable. I went into aerobics, water areobics and weight training and went for my life guard certificate. I thought I was just weak. Fast forward to adulthood.. three kids in three years. The pill did not work. I had sections with each. Lots of body parts removed. I had ovarian cysts kidney infections and stones and they were radio opaque so they never showed on anything, I had adenomyosis and at 30 got that thing out! I always knew it was all part of something bigger. My kids had serious health problems. My one daughter became epileptic after meningitis. She had kidney stones at twelve! So, I lead worship in church, had an active life.. despite it all I was a busy Mom. I also sang in a band. But before I ate I did my day. I was SO hard on myself. Forcing myself to be " normal" whatever that is. Then my epileptic daughter came home because of her health. I was raising a second family she had two young children and just was unable. So it just went like that until 50 and the only way I can describe it is it was like God pulled my legs out from underneath me. I was intolerant to heat, cold, food, life in general. Pain took over. I finally got a diagnosis, Vascular Ehlers Danlos Syndrome, a connective tissue disease. I found you because I had megacolon and it was clear something had to be done or I would rupture. So your wisdoms in hand I had an ileostomy. I wish I had one always the change was
I wish I knew. I have been plagued by all kinds of GI problems my whole life, and the most recent issues with diarrhea after eating have kept me pretty much at home, since I have such a short time to get to the toilet. I'm now 60 and content with staying home, particularly since I have other medical issues (including episodes of sudden paralysis). I admire you for your tenacity and for your openness about IBD and your stoma and the issues you have. I am sure it helps people, especially young people like you. Not everyone will talk about these issues.
I also wanted to tell you that you were the most beautiful bride I've ever seen. I think that every time your wedding video pops up. Hugs.
Whilst there might be no immediate answers, I think talking about it openly rather than remaining silent, is very good.
By doing this, you are creating education and understanding. There will of course always be some people who may be too wrapped up in their own lives to take in what you say, but others can listen and perhaps learn to be more understanding next time they meet you at a social situation.
Your channel is creating education and understanding.
First off, thank you for these latest vlogs. I have had crohns for 33 years. So far your talks have made me feel not so alone. The disease is horrid, not necessarily because of the physical symptoms, but the emotional aspects. I went to a therapist just before my first ostomy surgery. One day I said I was so tired of the “How are u feeling question. This is what she said…. Think of the outside world as guests to your planet. Kind of like visiting Disney world. Let them ride a few rides, buy some souvenirs and at the end of the day pat them on their heads and send them home. They will never truly understand but at least they go home having had a good time. I thought she was nuts until I got that miserable question again. How do I feel? I am tired and sick and am never without pain. But, if I am here to answer your question, that means I am still alive and not hanging out at a hospital with tubes everywhere. Now, go and enjoy the day, I am just going to rest . Because, I am a bit like Disney world. The ups and downs, the strange foods, and somewhere in my intestine I swear there is a mouse wreaking havoc.
So we'll said! I am copying this and saving to my journal to remind myself when I need.
My surgeon who performed my life-saving surgery leaving me with ileostomy has reminded me on numerous occasions, when terribly depressed, to myself, raise both thumbs up and repeat, "I am alive".
Acceptance! Accept and don't fight " what is" anymore, just work with it and make sure you have fun adapting to a "new" reality! I hope it helped, I wish you all the best!
Maggie and Zak Happy Valentines day!!!
I am in your shoes very tired and leave the house for doctors appointment only...I don't what to say...but you have Zak to take care of you!!!
Life changes are hard say no when your not feeling well...its ok to say NO!!!
Plus you have a green thumb and you're using it wow !!! Be happy with little things!!! 😊 mags you're the best remember that!!!
You're so wonderful. I really admire you. I'm happy for you to have such an understanding partner. Love your openness.
You are really inspiration those people who is suffering from the same type of disease.
I want to cry listening to what you have said in this video. On the other hand, so happy you have Zach in your life. Lastly, I am proud of you bc you are a thinking person who wants to work through and deal with these issues.
i am so appreciative of you and your willingness to offer help, ideas and personal experiences so openly. it's so funny how alone all this can be and how it shapes us. i've always felt like i've lived my life on the perimeter. i truly have felt alone in all this, all my life. i started having symptoms at 12, was diagnosed at 16, and have lived with decades of treatments, surgeries and finally got my ileostomy at 60. believe me when i tell you that i was truly ALONE (much being self induced). i had no idea of the community of ibs folks out there. if i had known of all the support it might have made my journey less isolating. i don't think i'd change things as it has shaped my thoughts and life however, my understanding of all this might have been less painful. thank you for all you do, you are truly making a huge difference in the lives of many !
Omg so true!!!! I absolutely hate that question from everyone, it’s so damn frustrating 🤯
So far for me (colorectal cancer/colostomy), the only thing that's important are the relationships with your significant other and family. The more they are with you, or you are with people close to you, your anxiety will melt. You're young. As time goes, things like "spontaneity" will manifest in other ways. You've got a good heart. It's all you need.
I used to care what EVERYONE thought about my body and why I have a bag. The question that does bother me is "So why did you get that bag and go through all of your surgeries if you are still so sick?" It truly is a struggle to determine whether they want the truth or something downplayed. As far as "intimacy" goes, I won't go any further until they know that "if you sleep with me, you sleep with my bag". I've decided someone's age doesn't matter as much as their maturity does. This generation has access to so much information, especially medical. I don't really run into people who don't know anything about diseases like Crohn's. Actually most people are interested in my conditions vs. grossed out.
Thank you for having this channel and for sharing your private life with us. For those who read this, take care, stay strong and be easy on yourself.
Hi Maggie, I love listening to you, are such an inspiration to me, I have several illnesses and have just been diagnosed with rhumatoid arthritis, which means constant pain and trying to work out the best way forward. I have a very understanding husband who I have been married to for 33 years and totally understands why we can't get intimate and he is fine with that, we still have a whole lot of fun and I try and push forward when I meet up with friends and I speak the truth and they also understand and check in on me from time to time, apologies for the ramble. Anne from Australia
Happy Valentine's Day!
You are so fortunate to have a supporting partner.
If life turns on its head and I'm expected to go participate, I fast with liquids.
Tell them that looks so good when they point at food.
If asked how I'm doing, my response is often I've been so busy lately, not elaborating at what, then I switch and ask about them.
I'm positive people start feeling bad when you back out. I don't want empathy, I just want to participate.
Hope you spoiled each other today.
Thank you for bringing up this sensitive topic. It’s so easy to be self conscious with an Ostomy, and spontaneity becomes a challenge. We need to have more conversations like this one.
Thanks Maggie for always bringing topics to the forefront no matter how difficult it might be. My issues are mentally and less physical but because I had to deal with it my hole life (nearly 35 years) I think I still have a good understanding of what it means to be in constante struggle with a part of yourself that just seems to not want to cooporate. There are different ways I tried but I feel the most helpful for me in social situation was to take the time and really educate people not only about my condition but also how the can help me. Example: Instead of aking me: Are you okay? I told them it helps more to ask: How can I help? Or I see you don't feel well is there anything I can do to make it easier for you? They also know that I don't always want help and when I answer NO they accept it and move on. This works most times now because I have reached a good level of understanding with them. They will always be more accepting and understanding than I am with myself. I still have to work on not beating myself up over everytime I cancel something or missout on a celebration. One way of dealing with it was to have meaningful time with them every chance I get. Calling them when I had a good afternoon to check in on thier lifes or to tell them hey today is a good time to visit me. I know the more I am angry with myself the more I will not be able to be there and do things I want so thats my motivation to give the part that doesn't cooporate real down time and make the most of the time I have energy to live my life.
I have often felt like this. I so appreciate your support.
Your helping so many people!! You and your hubby are perfect together. The love will get you through it all. Dont be to hard on yourself. People that love you are in it for the longhaul. Of course people can sometimes not to be able to relate which makes it awkward and at times you feel judged. I have a bladder condition that has really messed things up for me and most people can't relate and it makes me want to avoid socializing at times. I've adapted but not fully and it's not something I can surgically correct and medicines don't help. I'm alot older than you and use that as an excuse at times. I admire your strength at such a young age!!!!!!
Imo and from what I’ve watched, Zach is amazing, it seems. The love he has for you is evident. He is lucky to have you and the same for the other way around. I wish you two all the best.
Go and do when we can. When we can't, we don't!
wow Maggie, i am the same i don't have an answer for you , i feel the same like you my marriage is almost at the end .
I think with people you really care about, being honest once and explain, is enough for people that loves you to be aware that you'll not always be bubbly and spontaneous. With you partner, he's great and there are many romantic stuff you can do to keep the flame alive. You're great! Thanks for sharing.
Happy Valentine's day friend 🎇🎆🎆🎉🎉💗💗🎄🎉🎉💗💗💗💗🎄🎊😄🎊🎉🎉💗🎄🎉🎉🎉🎉💗💗💗💗
Happy Valentine's Day!
I can so relate to you on this! I was born with Spina Bifida (in 1966) and was diagnosed with Eosiniphilic Esophagitis about 10 years ago. I have to be careful what I eat when I'm out for fear of "explosions". I end up spending a lot of time in the bathroom when I want to be socializing! I didn't seem to have too many problems in the bedroom when I was married (I have a 16-year-old daughter), or so i thought! My birth defect nor my digestive problems have anything to do with why we are no longer together! That's a whole other can of worms. I have been with someone "new" for 6 years now (come July 20th, his birthday). Like Zak, he just rolls with it. We do have occasional "interruptions", but he just goes with the flow! I love him dearly!
I love honest answers but I also am sympathetic and understand why people either just say they’re okay or give simple answers that don’t tell you how much they are really struggling especially when not in a one on one situation
You are such a ray of sunshine ! I have learned so much. Would like to see a video of you and Zack.
Thank you Maggie for being “you”.....and sharing your reality including the “bad and the ugly” not just the good, because there are a lot of us who watch the you tube lives of others and end up feeling worse and even more guilty because of this social pressure to be perfect when our bodies and minds are not going to allow us to imitate these insane “performances”.......because it is not reality, and those of us who are ill, no matter what level of severity......we become even more hard on ourselves instead of allowing ourselves some grace and patience. For me, I have had to stop comparing myself to others and stop apologizing for how my illness affects my life......and as soon as I became ill I learned very quickly who my “real” friends were, and had to learn the so called friends I lost was not my fault.
It is upsetting to be asked, and especially by people who know you have a severe illness, “how are you”.....so I have decided to answer their question with a question, and ask “do you want the generic answer or the real answer?” It has actually made some people realize how insensitive their question was, and made them think that if they do not want the honest answer do not ask the question! or the “you look good” or you are looking better”.......ummmm, what is dying supposed to look like? Or being in pain etc.? There are many of us who have learned to “fake it” so we do not make those around us feel uncomfortable!
All I can suggest is you need to redefine what spontaneity and intimacy looks like for you, and not base it on what the social norms say it is or should be......and if the people in your life cannot get on board with the program you need to make your life function at your optimal best at that moment, because I know each and every day look different for me and what I can or cannot achieve, then those are not the people you need in your life! That may mean you are left with very few, and maybe even less than that, for me most of the time it is just my husband, and he has been my rock for over thirty years, because we both believe in the commitment we made to one another. That does not mean we have been left feeling very much alone in our journey, and everything I have written is easier said than done most of the time, but that is when you take life one moment at a time, and you do your best to keep trying, and not beat yourself up when all you feel you are doing is surviving, but cherish and celebrate the moments you feel you are thriving!
Thank you again Maggie for showing me and helping me feel that I am not alone, and being ill does not make me any less of a person who’s needs and wants are just as important.......
I too have been dealing with FOMO and loss of spontaneity lately. I have not found any answers yet, but sending a big virtual hug!❤
It’s now March so I missed this when you posted it. I totally agree with Camille and I would just add: be so grateful you have a mate that you can always go to. Remember your spoonies and you don’t have to make excuses or beat yourself up for changing an event or saying NO . I’m 77 and was very active until a few years ago so I just pray a lot because my Heavenly Father is always there and we don’t need to APOLOGIZE to anyone! God bless you . Your moments for being spontaneous will come and go., only participate in what you can and remember there are many others in the same situation s . They are in it with us we just love and go on.
I also have severe O S and Fibromyalgia I hope you will be able to get this to read . I have been so encouraged to watch you and I have learned that if we keep making excuses for our conditions, others won’t respect us so respect yourself.
As someone with a social disability, who is paranoid about people reacting weird: It depends on the person, but I'll usually start with the basic/socially acceptable answer and see how they do. The closer I get to someone, the more honest I am, and I might even tell them, "The more comfortable I become with you, the more you'll see it come out." I can usually tell the difference between when and who wants the basic answer, and when they can handle the real one. And from the other side, I would feel bad if I knew someone was pushing through being miserable because they didn't want to disappoint me! It'll be fine with the right people.
Suggested responses to, "How are you?":
Well enough, thanks (with a smile if you can manage it);
Looking forward to a better tomorrow, thanks (then they can ask for details, or not)
I'm happy to be here, thanks - how are you?
Honestly, it's been a rough day, but I am so glad to see you!
I also suggest you give yourself a break. Take something from the deli to parties, that perhaps Zak can pick up. You can transfer whatever into your own dishes. Call the deli ahead and ask what's available.
Secondly, arrange a signal with Zak ahead of time, and then leave early. The most important things are that you showed up, with a contribution to the table. If pressed to say why, that is the time for honesty: Sorry, my colostomy's calling!
This is long.. so sorry! It was a radical difference! I could eat, move, everything was so much better..but now the hernia is tearing, it will always be something. VEDS is a rare horrific disease. The things that helped me in social settings was my sense of humour. People are weird about chronic health issues. I have had more bad uninformed stuff thrown at me. I simply say, hmm I will have to look into that.. can you write that doctor's name down? Reiki is good for irritable bowel? I tried it all! I had an epiphany one day that I literally was lying through my teeth just to placate everyone else! Now I say as little as possible, if people ask me if I have eaten I say no, I was having a great chat..maybe in a bit. My husband is just like Zak... calm cool collective, but he is on it if I get sick! As you grow old together this thing happens where you learn to say no.. to others so you can be together more...intimacy can be so much more than you think as long as you talk, be honest, and our premarital counsellor said 15 minutes of holding each other at night keeps a relationship steady.. I did it, but not til lately did I fully understand.. to be intimate when you are chronic requires a LOT of trust! It begins with 15 minutes of holding. If you keep at it, it's easier to share what's holding you back, and the conversation starts.. this hurts, I'm tired, frustrated, sad.. and you. begin to reroute those things that hold you back. There then starts new ways to be intimate, to close the door to the world and just BE! You do so many selfless things you are hard on yourself like I am! Zak is your true north.. trust him. My husband still makes my knees weak after 38 years..if you just work at staying close it will come back... maybe not the same as before, but it's better because the truth is there and it's not an obstacle, but the vehicle to make a new love language, just as fulfilling and maybe more special than the normal people have! I would never say so much, but I see your struggles and your strength is such a miracle! Be encouraged, because you have each other forever and love stories have no end! I hope this didn't come off weird, but sickness causes a lot of relationship problems and I love the way you two are together! 😊❤
This was such a touching and helpful response! My daughter suffers from EDS (but not VEDS), and all the comorbidities that go along with it can really drag one down-the migraines, subluxing joints, gastro issues, chronic pain everywhere...it's a horrible disease. The issue of trying to be social when you just don't feel well, is a real obstacle. Thank you for your honesty.
I've been having a rough week and just now hearing you speak out about how you feel in those situations made me feel somewhat better. I already have a medical problem that I want get in to but I'm fairly new with my stoma. I love hearing you talk about all topics and you were literally the first person I came across here on TH-cam and you have a great way of speaking that helps me deal with my situation better. Thanks and have a great day.
I have to say, I love when people do what some would call "overshare". If I ask if you're ok, I'm ready for a real answer. I only have time for truth these days, no matter what that looks like. Thank you for sharing, the internet can be tough so I appreciate you.
I've never related to a video more in my life. Thank you so much.
I completely relate! I don't have a solution for every part, but I do have a couple thoughts. 1) exploit the spontaneity you do have: having a relatively good day?...drop your every day plans and do something fun. You may not be able to be spontaneous when you get the invite, but maybe you can do the inviting when you do feel good. The old "make hay while the sun shines" adage. 2) Conditions are rarely perfect in real life, even less so with illness. When your body/mood allows, go ahead anyway with expectations that match what you've got to give in that moment. I like to say, I give all I've got, but some days I've got more to give than others. 3) if the relationships breakdown, let them. I've learned a lot about quality over quantity in that department, and quality wins every time. The friends that truly love you will go out of their way to be with you in whatever way they can. 4) some of that loss of spontaneity is part of the stage of life you are in. In addition to what your illness adds, there's a natural decline. For me, it took my friends having children before they lacked spontaneity (now I sometimes get annoyed when they have to find a sitter first 😉). As I said, the best of friends will be happy to extend grace and also ask for it, and you just take turns being there for each other. 5) Lastly, when people ask how you ate doing, maybe you can just say "today's not such a great day physically, but I want to be here so I'm going to enjoy what I can even if I need to be a little quieter today.". If they ask for details you can decide to share based on each individual, but you don't owe anyone an explanation. Sometimes I feel better if I just say that quietly to the host so they know I am glad to see them. I might add " I'm really glad you invited me and I can be myself around you." But I no longer apologize for not being my best self. After all, they are not inviting you to preform. They love you and just want to include you ( at least the ones worth keeping).
You hit this topic on the head for me. I just basically given up on doing anything in the house or outside the house.
My life (after a life of prob but nothing major I was still living life) crashed 5 years ago and I've become perm l and disabled with symptoms. I get how you feel Maggie but I think because you didn't have an adult life without crohns and because you're a conscientious good decent person, you fe you have to justify yourself and your illnesses and you don't. You have the same worth as pre illness, the same worth with or without being extraverted and sociable at an event. You're sensitive warm caring have values integrity and I know who I'd want in my corner, not the loudest at a party.... I'd want someone just like you. Trust yourself, don't push yourself..... you are spontaneous all these videos, your whole life!! My goodness you've already done so much more than most ✌
GREt video. At 37 overnight I became chronically sick. Now, at 44, for the last 7 years I have to tell everyone… I may have to cancel that day. I have to take extra insurance any time I travel just in case… but I have no spontaneity left in my life. I have a rare kidney disease. I d been in the hospital over 700 days since 2016. (Mostly 2016-2019). I get chemo even though I don’t have cancer, to Treat. I really felt it deeply when you said I don’t want to go to restaurants. 💯. I have been to maybe 2-3 dinners out since 2016
Happy Valentine’s Day Maggie! Thanks for sharing this video with us❤️ im sure most of us here can relate 😢 I’ve had UC for about 10 years now.. I met my fiancé when I was recently diagnosed and he’s been there for me since day 1. I had a total colectomy & ileostomy reversal (jpouch now) and I’m feeling great! My fiancé & I are able to do more now that I’m feeling healthy 😇
Happy Valentines Day! I am sick also but different from yours but I end up with the same symptoms. I always end up wondering if I am just depressed. But I don’t feel depressed most of the time but those odd moments…i just can’t quite swing life and be my jovial self. I have a friend who always says I don’t let anything get me down but she isn’t sick and doesn’t know what I am feeling. She hurts my feelings. Just be yourself Maggie and don’t worry too much about how others are feeling or thinking about you. You just can’t change any of it. Have a great evening.
Maggie, don’t make this harder than it needs to be.
You for you being you is never a “buzz kill” to a group.
It’s OK to say you have life altering IBD,
and some days and times are more of a struggle.
That’s being yourself and being honest.
Remember, the truth needs no defense.
If they don’t know what IBD is,
this is opportunity to teach by
just being your true self,
and your own experiences.
If that is unacceptable to others,
remember, that is their choice.
For your true friends and family,
you *need* that love and support,
for we all get by
with a little help..
from our friends…
Um…Don’t overthink this.
The overthink part has another name:
Generalized Social Anxiety…
The real help to self
is to work on that.
Discuss this with
your mental health pro.
Make it a functional priority.
Also Maggie not mentioned
but I pickup, is the heavy cost,
to *all* of you, in everyway,
is the fuss with the barn.
That too has a social price.
So doing back to
The anxiety part,
it is likely easier
to improve
the anxiety part,
and way sooner,
than the barn fuss.
But if you do it,
you also improve
the barn fuss anxiety.
Think of it as a two for one deal.
I have Ulcerative Colitis/Ostomy and I am brutal honest with people about where I'm at with my illness. Maybe it isn't always easy and maybe it isn't always "polite" but I decided from day one this is me and this is how I come, with issues. No I'm not okay but I'm here and I'm trying to be apart of it all and that's okay so let's move on from me x
I've read many interesting comments here. A lot of people make a good point that intimacy is much more than sexual intimacy with someone you care for. Even without illnesses, we all have bodies that breakdown eventually! Sometimes it is just a simple matter of not being able to do something at the time. I also think in those moments where we feel better, we should embrace that and put on a nice outfit or whatever makes you feel good about yourself and indulge in that moment. Easier said than done but we can only do our best with what we have in terms of the issues in our lives.
This is when I am thankful I did smoke for so many years! I can't imagine at your age going through this for a lifetime. Zak loves you and understands just tell him, come up with a "code word" and use it!! My husband and I have one for when I am ready to leave somewhere. I just nod and he knows anymore.
I can relate to every part of what you said. I was diagnosed with mild UC in 2014 that progressively got worse up until 2018, I was hospitalized for a total of 29 days after the stillbirth of our daughter. It had progressed to my entire colon at that point. They talked about removing my colon then but wanted to start me on remicade to see if it would help first. It was the first and only medication to put me in remission and I did good for a while until my insurance stopped covering it in 2021. They were making me jump through hoops to try to get it and literally made it impossible. I even called state representatives and the state insurance commissioner without much progress. I quickly had my second worst flare that landed me back into the hospital for another 30 days total. They tried me on entyvio, two doses one week apart and it didn’t touch it. I had to have my colon removed and now live with my permanent ilesostomy.
It was hard trying to go places (pre-ostomy) and if I brought my own food that I knew I could eat or if I didn’t eat I would get comments like “oh, you don’t wanna eat any of this ? There’s nothing here you like? What do you eat ? I’d die if I only ate so little !” Well, quite literally I was dying and I literally couldn’t eat, it just kept making me rapidly sicker. I hated going places and I actually cried at restaurants a couple times because of the stress of having to order so specifically and then having to send it back to be corrected and feeling like you’re “a problem” and just wanting to leave as fast as possible.
I’m thankful now that I can, for the most part, enjoy myself again with some limitations but nowhere near as much as I used to have. I still have to be careful with what I eat sometimes and make sure I drink plenty and have a lot of confidence issues but this channel makes me feel like I’m not alone !
Former waitress here. Don't ever feel bad about needing something specific, even if it's not exactly the dish on the menu. And, don't feel bad or embarrassed if you need to send something back. The staff know that you are paying for it. If your dining companions complain, say, "Yeah, it sucks being me." And then consider if you want their company in the future!
Thank you so much !!
Firstly thanks for sharing your “disease” with us. You are very brave. I think you should tell close friends and family how you are really feeling - yes really. You have to be honest with your loved ones and if they are truly loved ones they will understand. If they don’t understand ask them “so why did you ask how I am”. You sound like an up front person and this video is great for Valentines Day ❤
Maggie you have to put yourself first. I’m guessing most of your friends know your situation. I was diagnosed 4 yrs ago with Sjogrens, fibromyalgia, and OA. There hasn’t been a day that I don’t feel like staying in bed for the rest of my life. I’ve also had spine surgery which didn’t work, I have 10 screws, 2 rods and a plate in my back. I am now going for RFA. My hubby like yours, fights for me, he never forces me to have relations, go to parties, etc. I can’t feel bad missing out, I have to take care of me with any time I have left. Meds help but most cause other problems, most people just say, well you have to get out, go for walks, just do it. If I could just do it, I would! I also had my rat knee replaced last year. I’m going to be 72 in July and married for 50 yrs in May. I have 2 sons, one currently not speaking to us, neither is his wife. The younger one has the most adorable 4 1/2 son and we get to see, re: FT. We just adopted a cat and she is the love of my life, she is now my therapy cat, she just doesn’t know it yet! I often wonder what people really think but I beginning not to care. I also can’t cry anymore, thanks to sjogrens. Please take care of you first, if they are your friends they will understand your feelings and call to see how you are doing and if they can help. No college here, hopefully just a big heart, which you have. Talk to Zak a lot and let him know how you are really feeling. Please take care
@5:19 So true. At 55 chronic illness has been an invisible companion for prob half my life. For too many it’s from birth. Normal for those in same boat to hibernate unless very small gatherings. For those who live in a building it’s harder but learn to run to cope. You’ll learn most others have their own issues at any given time and talk at not with you. You don’t owe any an explanation and very OK to deflect with I’m tired or fine etc. BUT pls ask for help if /when needed. Peace and health.
Happy Valentine's day. I truly appreciate your honesty. It makes me feel less lonely 😉
I have a undiagnosed ENT and other health.. Been ridiculed. The specialist here have been not interested..
This is almost 16 yrs.
Enjoy youre vlogs
💐
Hey there,
New subscriber....
Your topics a you cover are RIGHT on point with concerns,challenges to chronic illness.
I had a question if you do not mind... how do you maintain a good weight with chronic illness. I have Intractable pain with my illness, unfortunately, and my appetite really suffers. Do you have ANy food recommendation or different methods or ways to help this♡
You are so inspiring, have a wonderful way of dealing with everything! I see so much strength in you!
Thank you for sharing with us!
Love and light
Wow such a good and real conversation. Totally get what you’re saying. It’s tough. Glad you have that supportive partner, that’s a blessing!
Thank you Maggie for being so transparent. Telling us what answer you really wanted to give gave some humor to this serious topic! I have some health issues that prevent me from being spontaneous and eating all the foods I used to enjoy. I do miss a lot of events, but when I go I eat very selective and very little. People think I want to be as thin as I am and that makes me want to scream! I would love to eat all the foods and ice cream for dessert, but my stomach would be messed up for days!
Hi,
I don't have the same medical condition but started watching your videos to educate myself. Thank you for your honesty! My suggestion would be to prepare a simple dish to share vs several to preserve your energy. I appreciate your kindness to want to bring several dishes though! Give yourself grace since you also had surgery recently, you may need additional time for your body to adjust.
I've been in cancer treatment again, it returned in 2017, and I had a complete hysterectomy and have monthly injections in the muscles in both hips to keep my hormones levels low. I noticed feeling tired for a few days following the injections, so I just take it easy. I do what I need to do to for me! I am not in a relationship now but I do know that you and Zack are blessed with one another. So empty your bag when you need to and enjoy your husband!!
Happy Valentine's Day to you and Zack💖
I have severe bipolar and I feel the same way you do even though I have a psychiatric disability, not a physical one.
Sometimes I have crying spells where I can’t get out of an emotional funk. I stopped making plans bc I never know what mood I’ll be in when I wake up and my moods are INTENSE. Sometimes my wife wants to get intimate with me and I immediately turn her down bc I am in such a depressed mood. She sometimes takes offense bc it seems like I am rejecting her, but it’s really due to my mental illness.
I get it. Last year started having health issues. I had no energy just wanted to lie down constantly, experienced muscle weakness, talking was an effort so barely talked to anyone, had lungs issues, etc……Finally went to doctor a year later and found autoimmune issues for which im on different medication for. I also lost three family members in a 10 month span while my health was declining and it was horrible. I’m better but I still have my bad days and never know how I will feel from one day to the next. It makes it very difficult to plan anything. These days though I just have to say no to a lot of things. Last month my friends daughter died and I planned to stay overnight in an Airbnb out of state to attend the wake and possibly the funeral. Of course the day I was to leave I felt horrible, nauseous, tired, dizziness, etc….I almost turned around and went back home. It was Horrible timing but I ate something and started feeling better later in the day. I figured worst comes to worst I attend the wake for a short period of time if I don’t feel good and then go back to the Airbnb. As it turned out I was ok and lasted through the whole thing. I then wasn’t sure about attending the funeral the next day but then my friend brought it up at the wake and said your going tomorrow right? I couldn’t say no. I attended the late afternoon funeral the next day. I’m glad I was there for my friend but it made me think that maybe I should have done just one and not both functions. It’s horrible but these days if I can’t attend something due to my health I just can’t do it anymore and pressure myself.
I’m in Menopause and have some chronic pain issues, so I totally understand your dilemma.
Maggie, so many things can kill spontaneity even for totally healthy people. One that comes to mind is when you have a newborn (especially the first one). Many won't admit this but the fatigue, sleepless nights, stress, changed body (real or perceived) etc. can all affect you like a chronic illness as described and can affect relationships. Instead of a fun night out on the town with friends, a new mom may want to stay in and sleep because a 2 AM and 5 AM feeding is coming. Stressful jobs can also kill spontaneity. The only way to make it through is a supportive partner and acceptance. All of us slow down and change with age and none are as we were in college. Although sometimes easier said than done, remind yourself of the good you have and stay grateful.
Happy Valentine’s Day!❤
It really bothers me when I'm with several friends or family members and even though they all know I have a GI disorder somebody asks: "Why don't you eat? don't you like the food? why don't you drink anything? don't you feel well? why are you so quiet?". In the past I felt ashamed and didn't know how to hide the fact that I don't feel well, I made up various reasons, but now it gets on my nerves when I hear this questions. So if I know I won't feel physically well to meet and have fun with people , I don't go anymore! Yeah, not a great way to deal with that, maybe I become too sensitive over time..
Like you, I am so thankful to have an understanding and patient husband. I sometimes ask myself how would I feel/react if my husband/partner or a friend/family member needed to make arrangements in advance, cancel at the last minute, be able to only have a very short visit or change venues because of access issues? Would you roll your eyes and think "not again", "ugh I liked them so much better before they got sick" or "I'm going to stop asking them out as it's always a drama"? No? It's exactly the same for them. I would continue to love them and be happy to make some changes to accommodate them. I bet that's exactly how Zach, your family and friends feel about you. ❤ Mel xx
You are one of a kind in the nicest way and sooooo brave ❤
I love your tribute to your wonderful husband. Hopefully one day I'll find someone like him.
I can relate to your experience so much. I don't have what is classified as chronic illness. But when my fluid balance is disturbed, my kidney acts up, my digestion goes wayward and that affects my energy levels. And I just want to take some painkillers and go to sleep. I can deal with one thing, but it's the sum of it all that just wipes me out.
So to answer your question, the only one I can disappoint is myself. So if I don't feel good, I don't go to gatherings. Because I'm not going to have a good time and people will notice that. Real friends will have the patience and caring to stick it out with you. And yes, that does mean I don't have a lot of friends. But the ones I do have are precious.
Thanks for this video and getting this out there , can totally relate to feeling this way, hope you , Zac and the doggies had a lovely valentine's day xx