Sometimes when I am having a high energy day I can fool myself into thinking my body is on the verge of remission and I will take on too much. It’s quite the reality check when I find myself sleeping the day away the next day. I know better, but sometimes I forget.
I cannot thank you enough for making this video, Maggie. I have so much guilt when it comes to both of my diagnoses. I cannot work a normal job, and my husband is the breadwinner for our family. He puts in so much time and effort into his career, and he has done amazing things at a young age. We always go out on Saturdays, and I can tell by the evening how bad my Sunday (or further into the week will be). The last two weeks have been insanely hard. If I sleep during the day, I can't sleep at night. There are always "rules" about what I can do, and I'm just frustrated by it all. Sorry to be a debbie downer on your video. But, I do want to thank you for the video.
Hello! I really loved your tip about sitting in the kitchen. It isn't an accommodation that is frequently mentioned, but it makes so much sense! Also, hearing the way you talk about messes in your home made me think of a TED talk by a woman named K.C. Davis. She talks about the moral neutrality of care tasks, and her compassionate perspective has been super helpful for me. It is called "How to Do Laundry when you're Depressed" and it is amazing. Thank you for sharing these tips!
Thanks for sharing the TED info! I'm going to look it up. Wishing you the very best health & healing! A friend has a cleaning lady come in once a month to help out. She's there about 3 hours and it cost $80. I think having the peace of mind that the big stuff is getting done at least once a month is worth the price. I know not everyone can afford it but I think I'm going to try it out as I'm supposed to have more surgery and just having someone dust EVERYTHING and vacuum will help a great deal for my mental health.
Boy oh boy does this video hit home! I’ve had Multiple Sclerosis for at least 13 years diagnosed. Then in October I was diagnosed with Acute Myeloid Leukemia. I have received a stem cell transplant and am now trying to recover and get some stamina back. I totally understand what you’re going through and I’m feeling maybe I shouldn’t be so hard on myself. I’m going to rethink this. It’s hard because I feel so lazy, but my body is so tired. Thank you for this video!😊
I actually very recently found an app called Sweepy, and you can rate each cleaning task on how much energy it takes for you to accomplish it! You rate them 1, 2 or 3 stars, 1 being the easiest to do. You can then see every task and sort it by room, when it was done last, or by how hard the task is to accomplish. It has made it so much easier for me to get things done, when I’m having a bad day I only focus on the tasks that have 1 star. You can customize and edit your tasks pretty well, and you can make them recurring by how often you’d like something to be done. And honestly the best part is the app doesn’t notify you all the time with specific tasks, so it isn’t a constant reminder of all the things you don’t have the energy to do.
Thanks so much. I needed this! As if Crohn’s and Ankylosing Spondylitis wasn’t enough, I added a Lupus diagnosis last month. Zero energy + Zero sleepy = fatigue, so remember that fatigue is a form of pain. Listen to your body, spoonie.
@Toni Martin Owen Hi! I have Crohn’s, Ankle Spondylitis and inner ear hypo function. It’s difficult some days when I just need to rest. Hugs from one spoonie to another ❤
I get totally what you are saying, I am to diagnosed with AS, Ulcerative colitis and Lupus, amongst other as well. Been battling to get my biologs which caused my body to go into complete inflammation, cspend another week, 2nd time this year , in hospital. Reading your message my heart goes out to you. Hang in there, be strong. All of the best.
Thank you for this video! I have crps along with chronic back pain. Chronic pain wears me out. The pain and ptsd cause insomnia which makes the pain and fatigue even worse. I have an able bodied partner who unfortunately doesn't understand how much severe chronic pain, insomnia, and depression dictate what I'm able to do. My room is a disaster filled with knitting and plants. His room is spotless. We have separate rooms because I have to have a super soft mattress plus the insomnia that has me awake until 4am on a regular baud just doesn't work with his back and fits work schedule. We've been together for almost 16 years. 8 of which were in separate apartments so he didn't fully get to see me with my "mask off" until 2016. You are very lucky to have a partner who understands and helps out a lot. I've been time blocking for 18 years without even knowing that it had a name.
I feel like a placeholder. My husband is a single parent. He works 2 full time jobs. He takes our boys to all the sports. He cooks. He cleans. He does the yard work. I wake up counting the hours till I can go to bed. Even my 77 year old father does more than me, even helping me to get to appointments. I want to contribute by working but that would require a completely work from home. Thank you for being real and honest. You help so many ❤
Hi Maggie, I have learned so much from you. One thing is to listen to my body and do what I can do. Most days my list still has things on it that don't get done. I remember going to my therapist and telling her I didn't get anything done one day. She said that I did. She reminded me that I did do a lot. I got out of bed (some days that doesn't happen) I got dressed, that doesn't always happen either. I made my bed. Made my meals and ate. Then even if I didn't do the dishes I walked them to the sink. When I do a load of laundry and put it in the dryer it doesn't always get folded. I used to beat myself up for that. But she told me that at least they were clean. If I needed a towel I knew it was clean and in the dryer. So I have had to learn not to be so hard on myself. To give myself grace and know that I am doing my best. Some days my best is better than others. My best could mean staying in bed to take care of me on a day I need it. My home looks like someone lives here. I have learned to be Okay with that. Since getting my ostomy I have learned that I get tired quicker and take longer to get my energy back. One Day at a Time , little by little I have learned to be good to me. Thank you for helping me see that. Enjoy your Birthday Maggie, Do something that will make your heart smile. Hugs and blessings
I have an aunt with colitis who was complaining about not being able to do xyz cause she just did not feel good,.I told her I've found if I go past my limits,I pay for it the next day,so it's best not to do it. But yeah, you had good advice here.
I need to get a kitchen stool. I've thought for a really long time about having some kind of chair for long kitchen tasks. I personally find it helpful to only do one or two physical tasks in a day outside of my job. And I try to give myself some days off where I can shift tasks to those days if I get weaker or sicker.
love the stool reference. I do the same- even though we can stand and walk etc why burn ourself out? Another example my great grandmother is VERY active. She’s like a super human. But in the airport we get her a wheelchair, she can walk, long distance and she wants to but why would we burn her out? She is still 89 at the end of the day and traveling in itself it’s very energy consuming. I use a chair at the farmers market although I could stand the whole time when I’m working with my family but I definitely need to conserve energy - plus once in a while maybe once a month or once every two months I get randomly light headed and having that place to sit really helps and gives me a peace of mind ♥️ thank you for this content
Thank you!! I'm trying to sell my house so have to clean up everything everyday. So exhausting and I feel guilty that stuff is dirty. That you for reminding that we are not capable of everything!!
Lovely Maggie. Your personality is so infectious. Love to give you a good hug. Regardless of your condition, you're terrific. Zak married well. Thank you for making us aware Crohn's disease and other conditions. Please take care. 🤗
Thank you for this video. I have chronic fibromyalgia. Lots of other stuff. Some how I keep managing to pull through the day. Lol , my house too. My dogs love their stuffed animals. Same I do a room a day. If I can do more that day I try it. Some times I regret it. It was nice to hear this from you.
I so get this. I have some intestinal issues that sometimes hit and knock me on my butt for two or three days and then I have to "bounce" back from that. But I am also rather simply a weaker person. I don't mean muscle wise, it's more like stamina. If I go out and have a nice day even if it is a quiet day, I'll pay for it and spend the next day exhausted. It's frustrating not being able to keep up with other people but like you say we just have to adapt and recognize that all bodies are different. Thanks for the pep talk.
I think I was under the impression that once I have my surgery for either an ostomy bag or j-pouch that I would recover and then be back to normal, pre-IBD energy levels. Is this an unrealistic expectation? I'm new to your channel and totally loving your videos! I totally didn't realize that fatigue and managing energy levels was still a part of your life. I'm glad that I'm learning though and building realistic expectations. Thank you for all your videos. They've been so so helpful as I plan for surgery for my UC.
Thank you once again Maggie for this video, I am a beautician, and thankfully working a home based salon, but had a lot more bad days than good ones, where I could not even see clients. I have an amazing husband who is working so hard in providing for us, as I can not contribute in any way at this stage, this is a comfort to know. He is so amazing, supportive and always there for me, and sometimes the quilt is eating me alive. You are so right, listening to our bodies is the best advise, I do not sleep well, average about 3 hrs a night, so I need a one on one with my body 😂😂😂😂. Hugs to you and Zak
Thank you for this video! One of the topics that I have frequently talked to my counselor about is the guilt that I feel about not being able to do everything that I “think” I should be able to do and the importance of self care for someone with a chronic illness. Your positive tips are very helpful.
I have multiple chronic conditions , UC, idiopathic arthritis, GAD, and AUB. Productive for me means always having small things to do to keep things going. That day I do computer work if I can or do takeout. My bathroom gets cleaned when I have the energy OR guests. Do I want better, yes! Can I do better, not always and I don't judge myself for it as it is not productive.
❤ this was the best! The whole approach is so positive. I feel empowered and less guilt about asking for help, even excepting my limitations. I was diagnosed with fibromyalgia 2 years ago and the flare ups are awful. Everything hurts , no energy. Even my hair hurts 😂. So many aches and pains all over. Thank you Maggie for helping ,me accept my condition and for the tips to,work around it. I do have the ability to,work remotely and that helps but sitting at the desk for 8 1/2 nine hours is rough too but it’s easier than having to commute and get dressed up etc.
Im thankful for the video, Maggie. I'm 59 years old with Crohn's Disease and Type 2 diabetes. I also have Sleep Apnea. I was diagnosed with Crohn's at age 46, but im sure I had it for 20 years before that. Recently i was told about swollen lymph nodes in my lungs. I went to the Pulmonologist, who told me its not cancer. My G.I. told me he thought it was asthma, but the pulmonologist said he thinks it os inflammation from my Crohn's. I googled this extraintestinal manisfestation of Crohn's. It is extremely rare, but 3 studies have found it is very real. I get so fatigued that i can't perform at a full time job anymore. I retired in 2018 at age 55 because of the fatigue and other symptoms. My wife, who is 62 years old, is also crohnically ill, with Pulmonary Hypertension, Heart Failure, and Type 2 diabetes, is more fatigued than I am. We dont have children of our own. So we have to be caregivers to each other. The house is a mess more often than not. Yard work is tough for me, but if i dont do it nobody will. Same with the laundry. I try not to guilt myself into getting things done. It is hard not to. Think ill take a nap.
This rang so true! I’m 52 and have had Crohn’s disease for 22 years. I live in a state of perpetual fatigue, nausea and often pain. I work full time (and am struggling with that) and I have three grandkids that keep me very busy. The older I have become, which is natural with aging I just feel more tired than I did 22 years ago if that’s possible. My friends, family and employment have a hard time understanding that I feel like I’m constantly running on reserve. I hate the thought of spending more time resting when I have things I have to do. However, I’m more and more feeling that I just shouldn’t be so hard on myself and that rest is also needed so that I don’t end up with worse symptoms and likely end up in the hospital. Thank you so much for this video. It’s helped me to realize that I’m not being selfish for wanting and needing rest 💗
You work full time I'm 35 and been on disability since my mid 20s cause of crohns. You go girl that gives me hope for my future and wanting to do more. I have kids too. Sending prayers for all your struggles cause of this illness.
@@nicolebroughton721 I’m glad I’m encouraging. It’s rough, but I have a strong faith. I’m getting more tired and weaker the older I get. I’m going to go as long as I can, but working is affecting my quality of life on my days off of work. It takes so much time just to recover from a week of work. I wish you the best. All we can ever do is our best ☺️
Excellent video not just for chronic illness but anyone who is at a point in their lives that they lose energy fast. Thankyou for sharing this and helping so many, you are a light in a very dark tunnel❤❤❤
Having to deal with Crohn’s disease for over 27 years, I have some of the same issues. When I have good days and try to do as much as I can because I know that may be spending the day on the sofa, with a heating pad. I still have a different time asking for help. I also have OCD so that makes life a bit crazy. Thank you for your post, it’s nice to hear others who are going through the same thing.
Thank you Maggie! I really needed this video today. The part about ‘your body is fighting you while you are trying to accomplish things’ was exactly what I needed. I had a breakdown this morning about it being Wednesday and I am still worn out for over doing it on cleaning the house on Sunday. I still have a hard time adjusting my expectations about what I can actually accomplish.
Thanks for the video maggie. I am not a crohn’s patient, in fact I am Epileptic but you give some amazing points about guilt, independence and the need to start listening to my body more. Thank you so much. X
Guilt, I feel it and live it. MS has left me paralyzed pretty much from the arms down and my hands and arms don’t function well. I too have an Ostomy, Plus a Suprapubic catheter and scoliosis from years of IV steroids. I used to be very active and would love to teach my grandchildren many things. I miss being able to stand up and hug my husband! Watching and not being able to help around the home etc. exacerbates the guilt!! Your channel has been helpful regarding ostomy care. I understand your frustration with a body that dictates our activities. I cheer for you to feel better and celebrated you getting over 100 pounds! Congratulations. Thank you for what you do for others you don’t know. Take care, hi to Zak. Oh, wound care is very interesting as well.
This was a very helpful video! I’ve taken to making checklists and having a goal of doing at least one productive thing a day even if it’s just uni notes. Since my nausea and fatigue struck, I’ve been slower at doing things, like taking almost a week to make a crochet figure instead of the two I used to be able to do.
Best video ever!!!!!!!!!!! 💕 My husband does most around the house and I just feel stuck sometimes. Somedays I just need to sleep and thankfully he understands. Thank you for this video. Now I know I’m not going crazy 😅
Everything you said makes perfect sense to me and really hits home. I discuss this with my therapist often and I really do try to listen to my body. But my mind sometimes wants to win! I have to try to remember what you said about taking the break now because it will inevitably happen anyway and maybe at a more inopportune time. I have been suggesting your videos to everybody who is struggling in my ostomy support groups. I have had my ostomy for 6 years (I'm 56 years old) and watching your videos when I first got my ostomy was life changing. Keep doing what your doing because you are so relatable. I'm sure you've helped so many!!
Totally relate to all that you have said here you're awsome Maggie...my house is lived in I like it that way only because it makes sense to me not to overwork and unnecessarily too... save energy for self ofcourse. Also I rather be living my life than working scrubbing and toiling all of the time. I have been coping with ovarian cancer since 2014 glad to be still here ❤
You are a true fighter, Maggie. I know what it feels like to want to be productive and do things like other people get to. I do what I can to do things myself, but with my condition, it makes it hard for me to maintain my balance, as well as my coordination, and even though I want to do any kind of work that is around me, there are times that I am just too tired to be on my feet, and I just want to sleep. So I do have to ask for help for doing many things that I should be able to do myself, but just can’t right now. My condition is completely different than yours. It is grade 4 glioblastoma. It has now been almost two years, and unlike other patients, I have been told that I am doing extremely well. As someone close to your age, I also wish I could do so much more, because having any kind of illness really does suck.
This is soooooo accurate and helpful. I'm having a weak and tired day. My brain and body are battling. I was so hopeful that today would be a productive day, but my body said no way!
This video really left a mark on me. I suffer from fatigue from my illness and it can be very demanding. When that wall of fatigue hits you it really hits you hard and I can wake up in the morning and instantly feel that I have to sleep 3 hours more. Scheduling your rest is almost impossible. The best way for me to combat this fatigue is running or going to the gym, but absolutely not on low energy days. Those days I have to prioritize being able to function on my job as an OR nurse.
This is sooo true!!!! Thank you so much for this video thw guilt is absolutely real and i feel it all the time! My husband is absolutely amasing i also stuggle to carry the hamper down the stairs and get my hubby or teen bys to do my heavy lifing then i can take over.
Try taking Vitamin B Complex (2-3 tablets 2xs each day) I would not be able to function without it. I'm 72 and still work as a bookkeeper. You can also get Vitamin B12 Shots to help with fatigue. That requires a Doctor's RX who decides dosage and frequency. I can't live without my B Complex! Sure hope you feel better really soon.👍🙏👍🙏👍🙏
Ah flares. So fun esp if they end in ER - frequent fliers?✌️😂. A great attitude and perspective Maggie. PS I agree with if they mind they don’t matter and if they matter they don’t mind. Smile and be polite. We don’t know why their being like that but as they say in south: bless their hearts! 😉✌️
Totally understand beloved! Been chronically ill for almost 13 years now but I have to deal with malnutrition and I am so underweight. Which makes me so weak and my body is breaking down on me but anyways we do the best we can. But I was so much a perfectionist and like to do everything possible when I feel a little bit more energy so I do more then I am suppose to then I am down for weeks or a month it’s ridiculous. Because our illness controls our body even when our brain may want to do more but our body says NO I don’t think so!!!❤ best wishes beloved
Hi Maggie, your vid came just in time for me. I'm totally exhausted by only the plan of a short but far away trip... Feel guilty if I follow my need of rest. Thank you so much, stay strong and enjoy your birthday next days;)
Thank you so much. I have very painful arthritis and I find that I have less and less enrgy and more and more pain as time goes on. I feel better after having listened to your video.
The problem is, that for example to just stay in bed, because you have no enegery is a privilege, that a lot of people do not have. Especially single parents with kids. Thank you for your videos
Being able to have kids while sick is a privilege 🙂 not many can have them with crohns and other chronic illnesses. I have two I'm 35 already on disability from this disease. I always try to count the blessings and focus less on the negative. Some days easier then other
you know you tube is a job, dont beat yourself up. Making videos is alot of work, many you tubers go live because it iliminates editing, which takes alot of time. You do alot feeling not so good so dont be so hard on yourself.❤
I can totally relate. Seems like more down days then up. Plus to add to it I'm living with my parents in their 90's trying to take care of them. My husband is the greatest person ever like your Zak. He goes above and beyond what he should. Thanks for this video.
I have so many bad days and now I am facing complete shoulder replacement and I am so scared as to how am I going to take care myself and my ostomy. So I so understand what you are talking about.
Maggie I know what you mean about not being able to do some things because of lack of energy I'm going through that myself with this heart condition. Rather it's crons or cancer or heart disease or a injury of some kind it's hard. And thank you for sharing this blog
Time chunking is HUGE in productivity. I use the pomodoro technique for my writing, and it also helps conserve energy by giving you a break in between. (25 minutes on, 5-10 minutes off). I sit on a stool in the kitchen due to my lower back pain. Prioritizing is vital--and like Elsa, if it doesn't matter--let it go.
I’ve been chronically ill my entire life. I also loosely schedule rest time that could be a movie or nap. I’m an Early Childhood Educator in Canada so work with kids 12months to 6yrs. My mom manages a daycare I love to work but can’t always. I’m casual and I’m never counted in the ratio. So they have long shifts for 2 staff due to short staffing and required education levels. So they start at 5:45am to 5:15pm or as soon as numbers are down enough they can leave and 6:45 am to 5:15pm. I’m go in either 2:00pm to 5:15pm or 3:00pm to 5:15pm to allow then to leave. If I’m sick I just don’t go in, I haven’t worked in a month due to a flare. It sucks but happens and allows me to feel productive. I live with my mom (I’m 28) and I do light cleaning she does the rest. We just make adjustments as needed at home!
I’m going to give you some encouragement in exchange for the tremendous effort you make with giving support and information for so many people who have chronic illnesses or care for those who do. 🙏🏻♥️ Every decade of life has been “better” in my opinion!!! I just might be one of the very few people who will tell you this, but it is the truth in my experience. I feel the reason in my case very well may be perspective. I feel such gratitude for “getting it” that if I use a lot of energy up on a certain day, I’m gonna have much less energy and capacity to function, or even accomplish anything in the following days. I am learning more over time. It’s one of the ways to stay positive as well. Guilt for feeling like I’m not doing enough is kicked out the door. Not welcome here. Knowing that every day I can learn some thing, at least, amidst the various chronic pain and suffering of my particular chronic illnesses. I was a registered nurse in critical care for adults for many many years until my body just said “ha ha that’s enough”. Similar to what you made a joke about that. Mentally, I was geared up to do it, but I had no afterburners anymore. They were gone. Sadly. It happens, especially with chronic illnesses such as ours. I have dealt with a connective tissue disorder which made my body very vulnerable to tears in ligament, tendon, disc, herniations, etc. I was recently geared up for my seventh spinal fusion, just to keep pain within a manageable, somewhat livable state of being. Plus still needing mobility like basically walking in my early 50s. However, the ileostomy took precedence due to small bowel, obstructions, etc. So I know a little bit about multiple surgeries, and it’s not fun. But, perspective, at least there’s that! 😅 Thank you for your time and efforts. And I pray a special blessing of encouragement over you, asking God to give you strength in daily bread, and to help you continue to use your talents, which are many! 🙏🏻♥️😘
I watched this video this morning, when I was wide awake and ready to tackle the day. It's now almost 2pm and that tease of energy was a fluke. I've been trying to get motivated to do anything, but I'm physically exhausted. I have no idea why, but thanks to Maggie, I've decided the why doesn't matter. What matters is listening to my body. Does this mean I will lay down and vege for the day? We'll see. I MUST at least load the dishwasher. I live alone, so I don't have help. Dishes, here I come.... 😞😞
My embarrassing room is my bedroom it’s really messy I try but I clean for 10 minutes then an armful of mess gets dropped. Today I have done nothing but make dinner and unload and reload the dishwasher. But I did sit on the couch while waiting for things to cook so I crochet a row on a baby blanket that made me feel like I did something.
Lol. My embarrassing room is the WHOLE HOUSE! I live a,one and work 40-50 hours a week and not from home. Work had gotten so demanding lately and physical things hurt bc if arthritis and a swollen gut. It’s been super hard to get a handle on the chaos.
I have epilepsy and have been on prescription meds for 30yrs+ along with IBS, Osteopenia, Memory loss, Insomnia, low energy at times plus other side effects i get what your saying. I want to do so much but get so tired so fast its hard. at least you can fall asleep, its so hard for me to sleep my body feels waves during the day that I feel tipsy lol.
hi Maggie, I have fllowed you for some years now and used to love your proe family videos format where you shared you everyday family life while copping with chrons. I miss Zack, all activities you did together, the chickens, the garden the cooking and iven the man child, Did you informed in some video that you were going to change a more formal formal filled with medicalinformation? I just miss your everyday family fun life!!!!!
Sometimes when I am having a high energy day I can fool myself into thinking my body is on the verge of remission and I will take on too much. It’s quite the reality check when I find myself sleeping the day away the next day.
I know better, but sometimes I forget.
Sounds familiar. Our bodies can be cruel.
I cannot thank you enough for making this video, Maggie. I have so much guilt when it comes to both of my diagnoses. I cannot work a normal job, and my husband is the breadwinner for our family. He puts in so much time and effort into his career, and he has done amazing things at a young age. We always go out on Saturdays, and I can tell by the evening how bad my Sunday (or further into the week will be). The last two weeks have been insanely hard. If I sleep during the day, I can't sleep at night. There are always "rules" about what I can do, and I'm just frustrated by it all. Sorry to be a debbie downer on your video. But, I do want to thank you for the video.
You will be okay
I promise
Keep fighting, my friend
Sending love, prayers, and hugs
❤❤❤❤
“My body is literally fighting itself while I’m doing things, so…YEAH!”😂 I loved this,especially with the little twisted shoulder thing.😅
Thanx so much,u r a blessing
GIRRRLLLL... I have RA. I ask my sons and husband to carry the laundry upstairs/downstairs and the guilt is real. I've never conquered it! I get ya!
Hello! I really loved your tip about sitting in the kitchen. It isn't an accommodation that is frequently mentioned, but it makes so much sense! Also, hearing the way you talk about messes in your home made me think of a TED talk by a woman named K.C. Davis. She talks about the moral neutrality of care tasks, and her compassionate perspective has been super helpful for me. It is called "How to Do Laundry when you're Depressed" and it is amazing. Thank you for sharing these tips!
Thanks for sharing the TED info! I'm going to look it up. Wishing you the very best health & healing!
A friend has a cleaning lady come in once a month to help out. She's there about 3 hours and it cost $80. I think having the peace of mind that the big stuff is getting done at least once a month is worth the price. I know not everyone can afford it but I think I'm going to try it out as I'm supposed to have more surgery and just having someone dust EVERYTHING and vacuum will help a great deal for my mental health.
Boy oh boy does this video hit home! I’ve had Multiple Sclerosis for at least 13 years diagnosed. Then in October I was diagnosed with Acute Myeloid Leukemia. I have received a stem cell transplant and am now trying to recover and get some stamina back. I totally understand what you’re going through and I’m feeling maybe I shouldn’t be so hard on myself. I’m going to rethink this. It’s hard because I feel so lazy, but my body is so tired. Thank you for this video!😊
Prayers
Same here MS since 2003 living "alone" with 2 children and 2 cats and The house looks like 🌋
I actually very recently found an app called Sweepy, and you can rate each cleaning task on how much energy it takes for you to accomplish it! You rate them 1, 2 or 3 stars, 1 being the easiest to do.
You can then see every task and sort it by room, when it was done last, or by how hard the task is to accomplish. It has made it so much easier for me to get things done, when I’m having a bad day I only focus on the tasks that have 1 star. You can customize and edit your tasks pretty well, and you can make them recurring by how often you’d like something to be done.
And honestly the best part is the app doesn’t notify you all the time with specific tasks, so it isn’t a constant reminder of all the things you don’t have the energy to do.
Thanks so much. I needed this! As if Crohn’s and Ankylosing Spondylitis wasn’t enough, I added a Lupus diagnosis last month. Zero energy + Zero sleepy = fatigue, so remember that fatigue is a form of pain. Listen to your body, spoonie.
@Toni Martin Owen Hi! I have Crohn’s, Ankle Spondylitis and inner ear hypo function. It’s difficult some days when I just need to rest. Hugs from one spoonie to another ❤
I get totally what you are saying, I am to diagnosed with AS, Ulcerative colitis and Lupus, amongst other as well. Been battling to get my biologs which caused my body to go into complete inflammation, cspend another week, 2nd time this year , in hospital. Reading your message my heart goes out to you. Hang in there, be strong. All of the best.
@@ibdandme Thanks so much. It sure helps to know I’m not alone. ((Nicolene))
@@judibeth6483 Hi and thanks!((Judi))
Thank you for this video! I have crps along with chronic back pain. Chronic pain wears me out. The pain and ptsd cause insomnia which makes the pain and fatigue even worse. I have an able bodied partner who unfortunately doesn't understand how much severe chronic pain, insomnia, and depression dictate what I'm able to do. My room is a disaster filled with knitting and plants. His room is spotless. We have separate rooms because I have to have a super soft mattress plus the insomnia that has me awake until 4am on a regular baud just doesn't work with his back and fits work schedule. We've been together for almost 16 years. 8 of which were in separate apartments so he didn't fully get to see me with my "mask off" until 2016. You are very lucky to have a partner who understands and helps out a lot. I've been time blocking for 18 years without even knowing that it had a name.
I feel like a placeholder. My husband is a single parent. He works 2 full time jobs. He takes our boys to all the sports. He cooks. He cleans. He does the yard work. I wake up counting the hours till I can go to bed. Even my 77 year old father does more than me, even helping me to get to appointments. I want to contribute by working but that would require a completely work from home. Thank you for being real and honest. You help so many ❤
Hi Maggie, I have learned so much from you. One thing is to listen to my body and do what I can do. Most days my list still has things on it that don't get done. I remember going to my therapist and telling her I didn't get anything done one day. She said that I did. She reminded me that I did do a lot. I got out of bed (some days that doesn't happen) I got dressed, that doesn't always happen either. I made my bed. Made my meals and ate. Then even if I didn't do the dishes I walked them to the sink. When I do a load of laundry and put it in the dryer it doesn't always get folded. I used to beat myself up for that. But she told me that at least they were clean. If I needed a towel I knew it was clean and in the dryer. So I have had to learn not to be so hard on myself. To give myself grace and know that I am doing my best. Some days my best is better than others. My best could mean staying in bed to take care of me on a day I need it.
My home looks like someone lives here. I have learned to be Okay with that. Since getting my ostomy I have learned that I get tired quicker and take longer to get my energy back. One Day at a Time , little by little I have learned to be good to me. Thank you for helping me see that. Enjoy your Birthday Maggie, Do something that will make your heart smile. Hugs and blessings
I have an aunt with colitis who was complaining about not being able to do xyz cause she just did not feel good,.I told her I've found if I go past my limits,I pay for it the next day,so it's best not to do it. But yeah, you had good advice here.
I need to get a kitchen stool. I've thought for a really long time about having some kind of chair for long kitchen tasks. I personally find it helpful to only do one or two physical tasks in a day outside of my job. And I try to give myself some days off where I can shift tasks to those days if I get weaker or sicker.
love the stool reference. I do the same- even though we can stand and walk etc why burn ourself out? Another example my great grandmother is VERY active. She’s like a super human. But in the airport we get her a wheelchair, she can walk, long distance and she wants to but why would we burn her out? She is still 89 at the end of the day and traveling in itself it’s very energy consuming. I use a chair at the farmers market although I could stand the whole time when I’m working with my family but I definitely need to conserve energy - plus once in a while maybe once a month or once every two months I get randomly light headed and having that place to sit really helps and gives me a peace of mind ♥️ thank you for this content
Thank you!! I'm trying to sell my house so have to clean up everything everyday. So exhausting and I feel guilty that stuff is dirty. That you for reminding that we are not capable of everything!!
Lovely Maggie. Your personality is so infectious. Love to give you a good hug. Regardless of your condition, you're terrific. Zak married well. Thank you for making us aware Crohn's disease and other conditions. Please take care. 🤗
Thank you for this video. I have chronic fibromyalgia. Lots of other stuff. Some how I keep managing to pull through the day. Lol , my house too. My dogs love their stuffed animals. Same I do a room a day. If I can do more that day I try it. Some times I regret it. It was nice to hear this from you.
I so get this. I have some intestinal issues that sometimes hit and knock me on my butt for two or three days and then I have to "bounce" back from that. But I am also rather simply a weaker person. I don't mean muscle wise, it's more like stamina. If I go out and have a nice day even if it is a quiet day, I'll pay for it and spend the next day exhausted. It's frustrating not being able to keep up with other people but like you say we just have to adapt and recognize that all bodies are different. Thanks for the pep talk.
I think I was under the impression that once I have my surgery for either an ostomy bag or j-pouch that I would recover and then be back to normal, pre-IBD energy levels. Is this an unrealistic expectation? I'm new to your channel and totally loving your videos! I totally didn't realize that fatigue and managing energy levels was still a part of your life. I'm glad that I'm learning though and building realistic expectations. Thank you for all your videos. They've been so so helpful as I plan for surgery for my UC.
Thank you once again Maggie for this video, I am a beautician, and thankfully working a home based salon, but had a lot more bad days than good ones, where I could not even see clients. I have an amazing husband who is working so hard in providing for us, as I can not contribute in any way at this stage, this is a comfort to know. He is so amazing, supportive and always there for me, and sometimes the quilt is eating me alive.
You are so right, listening to our bodies is the best advise, I do not sleep well, average about 3 hrs a night, so I need a one on one with my body 😂😂😂😂.
Hugs to you and Zak
Thank you for this video! One of the topics that I have frequently talked to my counselor about is the guilt that I feel about not being able to do everything that I “think” I should be able to do and the importance of self care for someone with a chronic illness. Your positive tips are very helpful.
I have multiple chronic conditions , UC, idiopathic arthritis, GAD, and AUB. Productive for me means always having small things to do to keep things going. That day I do computer work if I can or do takeout. My bathroom gets cleaned when I have the energy OR guests. Do I want better, yes! Can I do better, not always and I don't judge myself for it as it is not productive.
❤ this was the best! The whole approach is so positive. I feel empowered and less guilt about asking for help, even excepting my limitations. I was diagnosed with fibromyalgia 2 years ago and the flare ups are awful. Everything hurts , no energy. Even my hair hurts 😂. So many aches and pains all over. Thank you Maggie for helping ,me accept my condition and for the tips to,work around it. I do have the ability to,work remotely and that helps but sitting at the desk for 8 1/2 nine hours is rough too but it’s easier than having to commute and get dressed up etc.
Im thankful for the video, Maggie. I'm 59 years old with Crohn's Disease and Type 2 diabetes. I also have Sleep Apnea. I was diagnosed with Crohn's at age 46, but im sure I had it for 20 years before that. Recently i was told about swollen lymph nodes in my lungs. I went to the Pulmonologist, who told me its not cancer. My G.I. told me he thought it was asthma, but the pulmonologist said he thinks it os inflammation from my Crohn's.
I googled this extraintestinal manisfestation of Crohn's. It is extremely rare, but 3 studies have found it is very real.
I get so fatigued that i can't perform at a full time job anymore. I retired in 2018 at age 55 because of the fatigue and other symptoms.
My wife, who is 62 years old, is also crohnically ill, with Pulmonary Hypertension, Heart Failure, and Type 2 diabetes, is more fatigued than I am. We dont have children of our own. So we have to be caregivers to each other. The house is a mess more often than not. Yard work is tough for me, but if i dont do it nobody will. Same with the laundry. I try not to guilt myself into getting things done. It is hard not to. Think ill take a nap.
This rang so true! I’m 52 and have had Crohn’s disease for 22 years. I live in a state of perpetual fatigue, nausea and often pain. I work full time (and am struggling with that) and I have three grandkids that keep me very busy. The older I have become, which is natural with aging I just feel more tired than I did 22 years ago if that’s possible. My friends, family and employment have a hard time understanding that I feel like I’m constantly running on reserve. I hate the thought of spending more time resting when I have things I have to do. However, I’m more and more feeling that I just shouldn’t be so hard on myself and that rest is also needed so that I don’t end up with worse symptoms and likely end up in the hospital. Thank you so much for this video. It’s helped me to realize that I’m not being selfish for wanting and needing rest 💗
You work full time
I'm 35 and been on disability since my mid 20s cause of crohns. You go girl that gives me hope for my future and wanting to do more. I have kids too. Sending prayers for all your struggles cause of this illness.
@@nicolebroughton721 I’m glad I’m encouraging. It’s rough, but I have a strong faith. I’m getting more tired and weaker the older I get. I’m going to go as long as I can, but working is affecting my quality of life on my days off of work. It takes so much time just to recover from a week of work. I wish you the best. All we can ever do is our best ☺️
Thank you
Excellent video not just for chronic illness but anyone who is at a point in their lives that they lose energy fast. Thankyou for sharing this and helping so many, you are a light in a very dark tunnel❤❤❤
Having to deal with Crohn’s disease for over 27 years, I have some of the same issues. When I have good days and try to do as much as I can because I know that may be spending the day on the sofa, with a heating pad. I still have a different time asking for help. I also have OCD so that makes life a bit crazy.
Thank you for your post, it’s nice to hear others who are going through the same thing.
Thank you Maggie! I really needed this video today. The part about ‘your body is fighting you while you are trying to accomplish things’ was exactly what I needed. I had a breakdown this morning about it being Wednesday and I am still worn out for over doing it on cleaning the house on Sunday. I still have a hard time adjusting my expectations about what I can actually accomplish.
Thanks for the video maggie. I am not a crohn’s patient, in fact I am Epileptic but you give some amazing points about guilt, independence and the need to start listening to my body more. Thank you so much. X
Guilt, I feel it and live it. MS has left me paralyzed pretty much from the arms down and my hands and arms don’t function well. I too have an Ostomy, Plus a Suprapubic catheter and scoliosis from years of IV steroids. I used to be very active and would love to teach my grandchildren many things. I miss being able to stand up and hug my husband! Watching and not being able to help around the home etc. exacerbates the guilt!!
Your channel has been helpful regarding ostomy care. I understand your frustration with a body that dictates our activities. I cheer for you to feel better and celebrated you getting over 100 pounds! Congratulations. Thank you for what you do for others you don’t know. Take care, hi to Zak. Oh, wound care is very interesting as well.
⁶
This was a very helpful video! I’ve taken to making checklists and having a goal of doing at least one productive thing a day even if it’s just uni notes.
Since my nausea and fatigue struck, I’ve been slower at doing things, like taking almost a week to make a crochet figure instead of the two I used to be able to do.
Best video ever!!!!!!!!!!! 💕 My husband does most around the house and I just feel stuck sometimes. Somedays I just need to sleep and thankfully he understands. Thank you for this video. Now I know I’m not going crazy 😅
I love this video! You really got across that this is hard, but we're not alone.
Thank u!!!! Ur suggestion about breaking down a task into doable chunks. Simple but also brilliant!! Thank u!!
Everything you said makes perfect sense to me and really hits home. I discuss this with my therapist often and I really do try to listen to my body. But my mind sometimes wants to win! I have to try to remember what you said about taking the break now because it will inevitably happen anyway and maybe at a more inopportune time. I have been suggesting your videos to everybody who is struggling in my ostomy support groups. I have had my ostomy for 6 years (I'm 56 years old) and watching your videos when I first got my ostomy was life changing. Keep doing what your doing because you are so relatable. I'm sure you've helped so many!!
Totally relate to all that you have said here you're awsome Maggie...my house is lived in I like it that way only because it makes sense to me not to overwork and unnecessarily too... save energy for self ofcourse. Also I rather be living my life than working scrubbing and toiling all of the time. I have been coping with ovarian cancer since 2014 glad to be still here ❤
Thank you for always being here for us, Maggie. You help so much more than you can ever truly know.
You are a true fighter, Maggie. I know what it feels like to want to be productive and do things like other people get to. I do what I can to do things myself, but with my condition, it makes it hard for me to maintain my balance, as well as my coordination, and even though I want to do any kind of work that is around me, there are times that I am just too tired to be on my feet, and I just want to sleep. So I do have to ask for help for doing many things that I should be able to do myself, but just can’t right now. My condition is completely different than yours. It is grade 4 glioblastoma. It has now been almost two years, and unlike other patients, I have been told that I am doing extremely well. As someone close to your age, I also wish I could do so much more, because having any kind of illness really does suck.
This is soooooo accurate and helpful. I'm having a weak and tired day. My brain and body are battling. I was so hopeful that today would be a productive day, but my body said no way!
Happy Mother’s Day, Miss Maggie.
You are kind to share your experience and tips on being productive in life.
I'm riding in the same boat as you! Keep positive!👀❤️
This video really left a mark on me. I suffer from fatigue from my illness and it can be very demanding. When that wall of fatigue hits you it really hits you hard and I can wake up in the morning and instantly feel that I have to sleep 3 hours more. Scheduling your rest is almost impossible. The best way for me to combat this fatigue is running or going to the gym, but absolutely not on low energy days. Those days I have to prioritize being able to function on my job as an OR nurse.
Glad to hear you pulling through, good job.
This is sooo true!!!! Thank you so much for this video thw guilt is absolutely real and i feel it all the time! My husband is absolutely amasing i also stuggle to carry the hamper down the stairs and get my hubby or teen bys to do my heavy lifing then i can take over.
Try taking Vitamin B Complex (2-3 tablets 2xs each day) I would not be able to function without it. I'm 72 and still work as a bookkeeper. You can also get Vitamin B12 Shots to help with fatigue. That requires a Doctor's RX who decides dosage and frequency. I can't live without my B Complex! Sure hope you feel better really soon.👍🙏👍🙏👍🙏
Ah flares. So fun esp if they end in ER - frequent fliers?✌️😂. A great attitude and perspective Maggie. PS I agree with if they mind they don’t matter and if they matter they don’t mind. Smile and be polite. We don’t know why their being like that but as they say in south: bless their hearts! 😉✌️
Totally understand beloved! Been chronically ill for almost 13 years now but I have to deal with malnutrition and I am so underweight. Which makes me so weak and my body is breaking down on me but anyways we do the best we can. But I was so much a perfectionist and like to do everything possible when I feel a little bit more energy so I do more then I am suppose to then I am down for weeks or a month it’s ridiculous. Because our illness controls our body even when our brain may want to do more but our body says NO I don’t think so!!!❤ best wishes beloved
You come up with great content. Thanks for the great examples and tips. I’m pleased you were able to make the most out of MD wknd.
Hi Maggie, your vid came just in time for me. I'm totally exhausted by only the plan of a short but far away trip... Feel guilty if I follow my need of rest. Thank you so much, stay strong and enjoy your birthday next days;)
Thank you!! ❤
Thank you so much. I have very painful arthritis and I find that I have less and less enrgy and more and more pain as time goes on. I feel better after having listened to your video.
Thank you 🌼🌼🌼
Wonderful video.
Thankyou so much for the reminders :)
The problem is, that for example to just stay in bed, because you have no enegery is a privilege, that a lot of people do not have. Especially single parents with kids. Thank you for your videos
Also I hope your situation gets better stay strong 💪 ❤️
Being able to have kids while sick is a privilege 🙂 not many can have them with crohns and other chronic illnesses. I have two I'm 35 already on disability from this disease. I always try to count the blessings and focus less on the negative. Some days easier then other
you know you tube is a job, dont beat yourself up. Making videos is alot of work, many you tubers go live because it iliminates editing, which takes alot of time. You do alot feeling not so good so dont be so hard on yourself.❤
Oh my goodness!! I needed to hear this!! I thought I've been failing bad because all I can do is sleep!!
Hello Maggie,welcome back great video...good topic...I am glad I am not the only one exhausted and can't do things!!! Thanks mags!!!!❤❤
I can totally relate. Seems like more down days then up. Plus to add to it I'm living with my parents in their 90's trying to take care of them. My husband is the greatest person ever like your Zak. He goes above and beyond what he should. Thanks for this video.
I have so many bad days and now I am facing complete shoulder replacement and I am so scared as to how am I going to take care myself and my ostomy. So I so understand what you are talking about.
Maggie I know what you mean about not being able to do some things because of lack of energy I'm going through that myself with this heart condition. Rather it's crons or cancer or heart disease or a injury of some kind it's hard. And thank you for sharing this blog
So helpful and accurate! ❤
Time chunking is HUGE in productivity. I use the pomodoro technique for my writing, and it also helps conserve energy by giving you a break in between. (25 minutes on, 5-10 minutes off). I sit on a stool in the kitchen due to my lower back pain. Prioritizing is vital--and like Elsa, if it doesn't matter--let it go.
I’ve been chronically ill my entire life. I also loosely schedule rest time that could be a movie or nap. I’m an Early Childhood Educator in Canada so work with kids 12months to 6yrs. My mom manages a daycare I love to work but can’t always. I’m casual and I’m never counted in the ratio. So they have long shifts for 2 staff due to short staffing and required education levels. So they start at 5:45am to 5:15pm or as soon as numbers are down enough they can leave and 6:45 am to 5:15pm. I’m go in either 2:00pm to 5:15pm or 3:00pm to 5:15pm to allow then to leave. If I’m sick I just don’t go in, I haven’t worked in a month due to a flare. It sucks but happens and allows me to feel productive. I live with my mom (I’m 28) and I do light cleaning she does the rest. We just make adjustments as needed at home!
I’m going to give you some encouragement in exchange for the tremendous effort you make with giving support and information for so many people who have chronic illnesses or care for those who do. 🙏🏻♥️
Every decade of life has been “better” in my opinion!!! I just might be one of the very few people who will tell you this, but it is the truth in my experience. I feel the reason in my case very well may be perspective. I feel such gratitude for “getting it” that if I use a lot of energy up on a certain day, I’m gonna have much less energy and capacity to function, or even accomplish anything in the following days. I am learning more over time. It’s one of the ways to stay positive as well. Guilt for feeling like I’m not doing enough is kicked out the door. Not welcome here. Knowing that every day I can learn some thing, at least, amidst the various chronic pain and suffering of my particular chronic illnesses.
I was a registered nurse in critical care for adults for many many years until my body just said “ha ha that’s enough”. Similar to what you made a joke about that. Mentally, I was geared up to do it, but I had no afterburners anymore. They were gone. Sadly. It happens, especially with chronic illnesses such as ours.
I have dealt with a connective tissue disorder which made my body very vulnerable to tears in ligament, tendon, disc, herniations, etc. I was recently geared up for my seventh spinal fusion, just to keep pain within a manageable, somewhat livable state of being. Plus still needing mobility like basically walking in my early 50s. However, the ileostomy took precedence due to small bowel, obstructions, etc. So I know a little bit about multiple surgeries, and it’s not fun.
But, perspective, at least there’s that! 😅
Thank you for your time and efforts. And I pray a special blessing of encouragement over you, asking God to give you strength in daily bread, and to help you continue to use your talents, which are many! 🙏🏻♥️😘
Ps my husband is same. I’m very lucky he can see if it’s a good or bad day. ❤
I watched this video this morning, when I was wide awake and ready to tackle the day. It's now almost 2pm and that tease of energy was a fluke. I've been trying to get motivated to do anything, but I'm physically exhausted. I have no idea why, but thanks to Maggie, I've decided the why doesn't matter. What matters is listening to my body. Does this mean I will lay down and vege for the day? We'll see. I MUST at least load the dishwasher. I live alone, so I don't have help. Dishes, here I come.... 😞😞
My embarrassing room is my bedroom it’s really messy I try but I clean for 10 minutes then an armful of mess gets dropped. Today I have done nothing but make dinner and unload and reload the dishwasher. But I did sit on the couch while waiting for things to cook so I crochet a row on a baby blanket that made me feel like I did something.
Lol. My embarrassing room is the WHOLE HOUSE! I live a,one and work 40-50 hours a week and not from home. Work had gotten so demanding lately and physical things hurt bc if arthritis and a swollen gut. It’s been super hard to get a handle on the chaos.
I have epilepsy and have been on prescription meds for 30yrs+ along with IBS, Osteopenia, Memory loss, Insomnia, low energy at times plus other side effects i get what your saying. I want to do so much but get so tired so fast its hard. at least you can fall asleep, its so hard for me to sleep my body feels waves during the day that I feel tipsy lol.
Having dealing with Ulcerative Colitis for 14 tests and I have ADHD with anxiety. Sometime I have fatigue.
Maggie why dont you do great bagcovers and sell? And I really loved the more IRL vlogg when you went to Blink-consert. More vloggs please
My dr said to give myself grace....I'm not good at slowing down
hi Maggie, I have fllowed you for some years now and used to love your proe family videos format where you shared you everyday family life while copping with chrons. I miss Zack, all activities you did together, the chickens, the garden the cooking and iven the man child, Did you informed in some video that you were going to change a more formal formal filled with medicalinformation? I just miss your everyday family fun life!!!!!
We've both just been so busy but I will try to implement more vlog elements when I can!
@@LetsTalkIBD GREAT
Thank you 👍 ugh my mere existence makes me tired 😴.
☀️
just put a trash can a small one in laundry room for lint. ❤
❤❤
Thanks you so much! Little bites of the elephant
Make sure you’re not deficient in B1 (Thiamine)
Despite all your treatments, you didn't have time for to make tea, vegetable broth, juicing.
?
I'm riding in the same boat as you! Keep positive!👀❤️