So this video popped up in my recommended a week ago and I popped it into my "watch later" playlist and its just been sitting there...until one of my subscribers shared this link with me and really encouraged me to watch your channel, so a number of things have been pointing me here. 😉 This is such an important video. Thank you for talking about the real and the hard stuff. ❤️ The loss and the grief are hard as hell. Your honesty on this really helps people - like me. Thank you.
this video was so heart felt i had to give up my dreams and you absolutely put it into words i could not express. this video mean alot to me thank you for making it...
I didn't have many symptoms start until i was 23. Just out of college, just gotten my real estate license and was so ready to start my life and then everything just slowly stopped. The pain started to take over and the things that I loved to do just kinda faded into the background of my life. I let my real estate license expire because going out of the house before being on medication was almost impossible and you can't sell houses from your bedroom. Friends disappeared because they couldn't see what was wrong with me and why I wasn't there anymore... Invisible illness was somehow imaginary illness to them. I started dance at age 3... So it's been hardest I think to have lost that ability to just dance. It's taken my doctors 10 years to start getting actual answers for what's wrong with me grieving is not even enough of a word on some days. The one thing the my illnesses haven't taken away is my ability to sing. There are days where that's been the only thing that has saved me.
I didn't realise I was grieving until I saw this video. I was just wondering why I'm crying my eyes out and feeling so hopeless on my bad days. I thought I was just weak and feeling sorry for myself. I hope I can find answers and joy on the days when I cannot do much.
Im sorry that you're grieving, but I'm glad maybe this video helped you process some of those emotions. Just remember that grief is a natural process and doesn't only accompany death. It is not something to be ashamed of, but rather felt and worked through. Like the grief you feel when a loved one dies, it doesn't ever completely go away. However, it DOES get better and the more you allow yourself to feel, the lighter the weight gets. Sending you a little hug tonight
I so appreciate your videos, especially today’s. I have a daughter who is 17 with hEDS with Gastroparesis and MCAS. She also has a rare disease called CRMO. She has lost her old life and still working to define her new life. I hope to try to get her to watch your videos... ❤️
I love you, Mickey 💜 I can relate to this video so much. The pain and grief of my life before being sick never really goes away, and I’m still learning to find joy in the life I have now ❤️
I needed this today. Had a bad appt yesterday. Rheumatologist had thought I had rheumatoid arthritis but nothing we have done that past 3 years has helped. So now I'm being retested for lupus.. I also have fibromyalgia, which she agreed is getting worse. I'm tired of being sick.
I have definitely gone through this as well. I have both POTS and EDS and my life before getting sick was taken away. All my friends, social life, health, dreams, and everything. You kind of just have to relearn life and figure out how to deal with everything. Thank you for this video!
Thanks for making this. I can totally relate. I have CF and like you, I started out "normal" and slowly had to give things up overtime. Eventually getting a transplant. I know have chronic rejection and am needing a second transplant. This time around it is sooooo much harder. I got a taste of healthy life and I loved it! I went from having friends, a full time job and living on my own to quitting my job, moving back home and pretty much only seeing my family each day. I really feel for you and know you are not alone!
Glad you made this video bc it describes the struggles and process one must go thru when you are forced to find a "new you". Gotta say goodbye to the old me first. Who wouldn't be depressed but it has to be worked thru in order to grow.
I wish my younger self was told these things. I always said to other people that I can’t change being sick but I accept it and I’ve learned to live with it...but I didn’t really. I’ve only recently, after almost 10 years, truly started to accept that I’m not that same kid that built robots or ran instead of walked to the other side of the store because it was more fun. I have a much smaller limit of what I can physically do but it doesn’t mean those achievements I want can’t happen, they will just take longer and I need to be honest with myself about what I can tolerate. Grief is absolutely the right word. You can’t just shove those feelings aside and move on, you have to come to terms with your new reality to be able to build a happy and achievable life for yourself. Thank you for posting this video
I came across this in my recommended and I was having one of my worst days and this is truely what I needed to hear right now thank you much love to you and all fellow zebras xx
Im so sry ur having such an awful day :( im disabled w incurable chronic illnesses so i can def understand. I really hope n pray tommorrow is a much better day!! 💜🙏
I have a couple of chronic illness, but this hit me on an even broader level. I divorced four years ago after twelve years and two children. The adjustment to a new life, to relearning how to really live, ah! That was so difficult and painful. It still is. This was a great word of encouragement.
I have to get surgery on both my shoulders and that causes so much physical and emotional pain. People don’t understand how painful dislocations and subluxations and just getting out of bed is. Thank you for making my feeling valid Mickey ❤️
Ugh I relate so so much. I just got diagnosed but I had to leave synchronized swimming before due to the constant dislocations and pain. Pre-sick I was a four-time Jr Olympian, now I'm just sick with a bad body. Your channel has helped me a ton, I'm also from MN and I have hEDS. I just got into Mayo for treatment and your vids have helped me be less anxious. You are one of the only health youtubers who I can relate to, thank you so much for sticking around even if you are tired!
I may be crippled from EDS and unable to do things I used to do. But becoming disabled also opened a whole new world with new interests and new friends and a wonderful community! The one thing I miss from my old life is the ability to work and have a real income instead of relying on disability benefits that isn’t really enough to cover the living expenses, and hence having to constantly worry about your economy, all because of a situation you did not choose! But at least I have worked, I worked until I was almost 26 so at least I got to try it, unlike many others with EDS or other conditions. But the loss of my ability to work has definitely been the worst blow for me since my EDS started kicking my butt
Wow, this is truly beautiful. I have EDS as well, and was expecting to cry at this video, but your optimism and positivity was so incredible. You have such a way with words! Sending gentle hugs, fellow zebra xxx
For being so young, you are very smart beyond your age. You have had experiences that most will never have to see or go through. Thank you so much for sharing.
Thank you for elaborating on this topic. I am going through that grieving process right now, and I was just talking about it with my husband. I have been sick for years, but have never been able to be diagnosed. So up until recently I went to doctor after doctor with the hopes of getting diagnosed and getting better. Just in the past few weeks I have decided to change my mind set and accept that this is my life and grieving my old life is so hard. I am working on opening my own counseling private practice in the fall focusing on chronic pain/chronic counseling and I have this topic on my list of things to research. Grieving your old and healthy life is so difficult for so many to understand.
I love you Mickey!!! I’m feel the exact same way. It’s totally not fair that we can’t do the things we love anymore. I totally understand where you are coming from. ❤️❤️❤️❤️❤️
I've been watching your videos lately quite often - I've got hEDS, uncontrolled asthma, epilepsy and that's mostly just the tip of the iceberg as we are still in the phase of finding out what's actually going on. Similar to you, I've been a really active child, doing dance, kung fu and playing instruments. These things were totally my passion and losing them one by one is emotionally so painful. And nobody is really talking about this point in chronic illnesses and beside my chronic pain, fatigue and numbness, I almost feel like, that living with this loss is even harder for me right now. I've been looking for other things, but I haven't found anything yet. And with this, I just wanted to thank you so much for talking about that! For me, it's spot on and I can relate fully to you - you gave me encouragement not to give up.
Excellent video 👍 I can’t remember ever being healthy or not in pain. I’m 50 now and only recently GOT my eds dx, but I always knew there was Something wrong, but drs back then just brushed me off. I’ve never NOT been in pain. So I can’t grieve that. And I never could stick with a sport long enuf to get good, I would always get injured, dislocate etc. so I turned to art. And I still do my art it just is harder. But I do get the grieving- when I got the dx it was both validating, yet also devastating if that makes sense.
Mickey you have expressed what all of us with true life altering illnesses need to hear. Thank you for your strength, and heart. Evil causes all things that are bad, wrong, hurtful, painful etc and yet God will allow faith in Him to use the results for good. You are clearly an example of that. You have given me strength just by your example. Thank you!
I do not have e.d.s. but I had heart surgery and still have multiple defects. Due to a rare chromosomal defect. Also lost my vision due to health issues one being Optic Neuritis. It came back in 2011 but this time it would not get better. And we tried with doctors for years. I never fully grieved my eyesight and then found out I had Turners Syndrome and will not have bio babies and it all blew up in bad eating disorder and depression. I worked since 2017 to pull myself out. And I can say with the support of others I am so much more at peace daily. Peace, serenity, and meditation changed my life. Finding the lord again. Thank you for your honesty. So so very true. You have to feel it first to let it go ...
I so feel you on this video. I'm 5 years into my diagnosis and I didn't realize how hard the grieving process can be. I have hEDS and a lot of the comorbid conditions and I can no longer do as much.
Even at my age (I am your parents age or around there!) this was a good reminder of how to take care of your mental health for whatever condition you have (I have EDS and more). Eventually when I get to start my channel we can collaborate on something, I am here in Ohio:)
VERY WISE, and true. I had 40 years of perfect health and an active life. Then my life changed drastically. You are a very wise, real and positive young lady. You’ll always find your passions in life and pursue them on your terms and succeed. 👍💜
So much said in this. Grief is very hard to deal with and like you said everyone grieves differently. You were mourning you. Chronic illness gives you a different perspective on everything. Find a way to find joy in everyday little things. Sometimes the little things can make a difference.
I really appreciate this video I have Chronic Lyme disease, POTS, and HEDS and I’m dancer! Dance is my way of escaping from things! I’m so sorry you had to stop dancing and figure skating I know how special those things are! However I loved this topic you talked about it was so real and inspiring and it’s something that others need to know that they are not alone in! 💚💚
Yes! Equestrian was my thing and I was about to try out for the Olympic Games but had a really exhausting and difficult year so I hung up my bridle and never rode again. Riding was exactly what you said, it not only was my escape, but my therapy. I think back to taking my horse out on a trail and riding into a beautiful sunset and I would talk to her. Who needs a therapist when you have a horse? She was a very good listener 😉 I had a hard family situation with the verbal/mental abuse from my insane dad and my absentee mom who did everything a mother does and more, but she wasn't affectionate. So being able to just leave the house when sh** would go down with me and my parents (dad mostly) and take my horse out and ride until the sun went down was absolutely amazing. And I used to keep a journal. I would do that now but I have too much pain writing, no computer that has a keyboard right now (it's a Mac Mini). I have no clue how I would do it on my phone so I wind up doing this in a comment or post, I tell my life story because I forget I'm not journaling. So I apologise for the insanely long comment. I just liked your comment because I rode and that was my escape and my therapy, I hadn't thought about it like that in years. Thank you for putting it back in my brain!
I relate SO hard to this. I have multiple chronic illnesses, including EDS, but my "main" one is an extremely rare bone disease called osteogenesis imperfecta, yes I am "missses glass -_-", and it makes my bones incredibly weak and easy to break along with other symptoms including 24/7 bone pain. But I was able to dance and NOT break anything only by the grace of God! But I danced for *10* years! And it was incredible to be able to do that because I really couldn't do much else. But my Junior year of high school when my health PLUMMETED for no apparent reason, my bone was so bad that I couldn't even go to school for about 3 weeks, moving was painful, I was tested for bone cancer, and I had to quit dance. The only thing that was mine and made me feel somewhat "normal" was gone now. And my best friend was in dance with me and when I had to quit dance it was in the middle of the competition season and I had to sit in the audience for the first time and watch instead of being on stage. That was one of the *hardest* things I have ever had to do.
Thank you so much for this video ive been sick for about a year now. And slowly i stop activities i used to do. Dont notice how much of a change until i look back and compare then to now. But it is sad. A loss of what life used to be. What my abilities used to be. Thank you
I agree with u that being healthy then becoming chronically ill is harder than having it from an early age. I have had juvenile rheumatoid arthritis since I was 2 and have never known anything different. So 14 surgeries and 4 joint replacements later I’m still hanging in there! However I also grieved for the life I could have had. Seeing people and friends do things like running or even just walking without pain was difficult. I also have depression controlled with medication as a result of the arthritis and limitations and chronic pain. However like u said the grieving process doesn’t last forever and I have fun no matter where I am or what I’m doing. Life is too short to live in a state of why me and what ifs! Thank you for this video. U were well spoken and encouraging to others as always!
Before I read an article about grieving the loss of your healthy life and everything you took for granted I didn't think it was a thing. But while I was reading it, all my feelings fell into place and I could relate to it so much. I'm still working my way through it and as you said, some days are better than others. At first the most confronting thing were my peers, they could do everything they wanted and I couldn't, but that doesn't bother me as much as of now. The thing that triggers me now is seeing elderly people walking and doing all these thing that I can't do anymore (I turn 25 this year). I feel like it has to be the other way around, I should be the one walking long distances and they should be the ones sitting at home, thinking about what they could do when they were younger. But it's a bad thought and I try to turn it around and be happy for them, that they are still healthy enough to do the things they want to. But it's a proces and eventually I will get there. I hope you will find peace with it as well :), keep fighting!
I totally understand what you mean..I didn't get sick til my late 20s, now at 33 I've had to quit working, use a wheelchair so many things I can't do anymore. I don't have eds but I have chronic pain and Multiple physical disabilities. I do get depressed Alot about it. I'm sad your having to go through this so young . Xo
I get it, I was a Kung Fu instructor and a Belly Dancer, I rode quads...now I can’t...I’m still working through the anger. Your so resilient! Keep up the good work on here.
Totally relate and understand. It's hard to remember what things used to be like! I try not to think about it too much. I'm sorry that you have to understand what this is like. But thank you for being honest and sharing your heart with us. :)
Thank you so much, Mickey. This is exactly what I'm going through right now grieving the loss of so many things especially my health. I know I need to work on acceptance. But it's hard and I feel very isolated.
💗💗💗 I'm not "as sick" as you. I'm mentally processing my "new" diagnosis. My nurse told me a lot of the problem is that I still havnt dealt with the trama. The trauma of being sick and being sick for so long without a diagnosis. The emotions are insane.
Been there done that. My situation was completely different, but this is completely relateable. I say that peace is a process, the process is a choice. Someone could absolutely stay in their grief forever, but if you work through it, it does get better. You'll have a different life, but it will still be okay. Having gone through one myself, I think that everyone will go through some version of this process at least once in life. I wouldn't wish it on my worst enemy, but I wouldn't trade how it changed me for anything.
I feel a lot about the same way with my IBS when I was younger I used to go ride bikes with friends and stuff and some days I can barely leave my bathroom now the worst part of it for me was having my doctors give up
Very well said. I've been trying to explain this to my family. It took me a while to realize I was grieving my old life, my life with less pain and with sports. As soon as I realized I was grieving, I allowed myself to feel the pain. And then I was able to move forward. But you're right, it comes in waves.
I love your videos, your empathy for others in spite of your own struggles. I understand, been there. Having friends abandon you when you could REALLY use their support is very hard to deal with. You are in my thoughts, and prayers. Bless you for the wonderful young lady that you are!
I think you done an amazing job at explaining how the rollercoaster ride goes. The ups and down and the figjt that you do find again some how. Bit also its people like yrself thats so many others that are finding it hard and lets us feel less alone. Because we lose so much and friends is so nice to feel close to someone even if they dont know you. You are amazing, i wish to see more of you on here but i know u got to do it when you and and you may not was it all out there even though you are so open. 💕💕
I can't thank you enough for sharing this. This is such a important topic which I've been struggling with. Thank you and I appreciate you continuing to use your platform to spread awareness about chronic illnesses!
I see a new movie that can be made, thats a tough path you had, and you change it around, stay happy... jeeze id be your friend, like who wouldn’t want to be your friend. Keep being awesome
Hey, Mickey. Thank you for sharing this process with us. Each person’s journey is meant to bring them closer to God and to bring Him glory. You’re definitely not wasting the gifts He has given you and your testimony is more powerful than you think.
We all go through this in our own way. Grief and sadness go together just like the movie Inside Out. It’s okay to mourn what we lost when we have chronic illnesses 🖤
Thank you for sharing and speaking on this topic. I struggle because of all the unknowns. I’m only a few months into my journey so I have more questions than answers. And maybe it’ll always be that way. I wish I knew if it would get worse, and what that means for me. It’s not something I can talk with anyone about because I just don’t think they’ll understand. It’s a lot to process for sure.
I'm 44. I have been sick all my life, but like you said, I was about to go to the Olympics for equestrian eventing. I had a ton of friends as well. I had four 3 day shows in 4 weeks out of town in the summer when I was just turning 15. Walking 3 different event courses was it. I literally just COULDN'T do that again. The year before I started to have severe narcolepsy so I could barely pull my boots on let alone everything that goes into that (it's a lot!) I hung up my bridle and pushed my responsibility of caring for my 2 horses on to my mom and became really resentful. I didn't mention anything about being way too tired and having brain fog etc because my parents didn't believe anything was wrong with me and I was attention seeking or a hypochondriac. Telling them any complaint never got me to the doctor so I stopped saying anything. My point is that EDS was why I had severe chronic fatigue which started with narcolepsy which I still have. I have to REALLY push myself just to take a shower. I absolutely have no energy. I get waves of pep that allows for some cleaning or something but it's been at it's worst the last few years. I pushed myself so hard and I was having an insanely busy social life and man we laughed so hard at everything and I have to agree, close friendships and laughter can be the best medicine. But then I "got" sick. And on top of my Juvenile Rheumatoid Arthritis I was misdiagnosed with and then my EDS I lost (had to stop, my dog grooming business) and then I started having seizures and I've barely gotten out of bed for much at all and my outings have been to the doctor, dentist, etc. I have been at my sickest the past 3 years, but it's been longer than that when I lost all my "normie" friends and that hit me hard. My illness was a very late diagnosis (I wish I knew how in the world they missed it). I have POTS, MCAS, and Gasteoparesis along with adrenal insufficiency. I love this video. I have to learn to grieve the loss of my friends and social life in general. I have a really hard time with grieving food. I was never a foodie, but sitting at a table on holidays or something like that with a plate with nothing on it is so awkward, everything revolves around food. And I also have to learn how to think differently. My 75 year old mom is supporting me and my daughter who does cleaning and caring for the house and takes me to my appointments, she organises everything and does the yard work. I'm waiting for disability to approve my application which will take years. The burden I feel I am to my mom and daughter is really hard to not be drenched in guilt constantly. I start seeing a counselor tomorrow so this was an excellent video for me just in time. I really appreciate your videos. Oh that's another thing I was thinking from the video. After a career as a nurse for 15 years and as a business owner/operator grooming dogs, and losing my friends and my health and everything that has turned into, I have never had or been interested in anything in my past that are possible to do now. I'm really struggling to get out of bed and can lay around or sleep for a week straight. I'm not depressed so to speak, I'm just existing. I need to get more out of my life. Vlogging would be really fun but I doubt I can talk into a camera and I have no idea how to edit. I can't read anymore because my eyes are awful and both are lazy and I used to really love reading. Anyway, this is stupid long! I am so sorry for rambling. I tend to forget that this isn't a journal entry! Thanks for your vlogs. They are really helpful. EDS awareness month is right around the corner! Take care chickadee! 🦓💪😷✌️
So true!! The grieving is a very important part that you HAVE TO go through to let go of your old life. If you don’t you’ll never be able to embrace your new life. It never goes away because we DON’T know what our progression will be. EDS always has a habit of throwing a 🔧 in the works and SURPRISE you have to deal with that now!! Life can still be very fulfilling. It’s just a new set of challenges. THANKS again for being so encouraging for all of us. Support from other people in the same boat is sooo important!!
I was doing ok until i joined rhe Army and had stress fractures in my hips in training. They couldn't explain why I was still in pain after they healed. I was sent home and that was devastating, but i went to school to be an aircraft mechanic for 2 years. A year of working and then i had hip surgery for dysplasia. Its hard to tell people that losing the army and being a mechanic was losing who i am. Im learning to try and find joy in new things.
I love this video! In 2016 I was really, really sick and it was without a doubt the hardest year of my life. I was dealing with a lot of depression and grief over losing the life and happiness I had when I was healthy. My health fluctuates and probably always will, but I'm getting better at finding joy in what I have and what I can do at any given time.
Thanks a lot for this video. I have stripes to. I totally understand the part where you talking about grife it's so true, but also so hard. I was very positive in the begin of my sickness. Now it's going worse with me and I find it hard to accept it. I know it takes time. And I hope that someday I can be positive again :)
Thank you for making this video. I am one year to losing some of the use in my hands due to numbness abs weakness, such was finally linked to hEDS. I was diagnosed in May. I'm using forearm crutches for mobility now. In the course of less than a year I went from chronic but manageable pain to severe complications. I'm scared of no longer being able to dance again. And just today, one of my doctors told me there's nothing else they can do. So yeah, I'm kinda in the thick of it now, and this video came at the right time
I totally get that. I was diagnosed with stage 4 cancer almost 6 years ago. I refer to things in my healthy past as BC days. It sucks and I struggle a ton with major depression and a few other fun things. I also think that I struggle with.... ok, so I had to deal with being told that I am dieing, but I’m still here. I can’t do anything that I used to do, so it’s not really like “living”. This whole being terminally ill thing is so complex and you don’t know anything about it unless you go through it. I hope y’all never have to.
Stay strong darling. I know it may seem so incredibly cliche to say because I know you've been told it a million times. My lost fiance to cancer, it's a terrible disease that's incredibly unfair. I remember the mental battle that she had to go through and you're right no one should ever have to go through that. That limbo. The I'm here but I'm not, but, we are all in that state every day. At any point any one on this planet could die at any moment. Please do not waste this precious time you have left on this beautiful earth with such a burden on your heart. Embrace those around you, take in everything positive that you can. I know it's so hard to put the negative thoughts out of your mind. You just have to wake up every day and say today is a good day for a good day. Every day that you wake up is another chance for a good day. Reguardless of your health situation. I really hope this message reaches you in better spirits. Gentle hugs ~Michelle
Yes, girl, so much yes. I have cEDS/POTS too 💜. Grieving has been a really harsh journey, but it's definitely getting better... I hit my "wall" after a few years at my dream job (lab scientist) after getting my bachelor's degree. It's been a little over a year since I had to stop working. My hobbies have become harder, I need a wheelchair for "long" outings, my mind just isn't sharp anymore. It's hard, and it sucks, feeling like your body has robbed you of the ability to just do the things you want to do. But like you said, I'm finding new ways to still "be me" in the ways I'm able 💜 stay strong zebra sister, thank you for posting this
I miss my old self to girl, now it's all doctors and testing for a lot of my time. I can so relate to what you're saying but also I understand that I have things that I can still appreciate but don't have to do with my medical life. Some days of have hang in there till you can find your rainbow
I was 42 when my health was turned upside down by EDS. Only thing was, nobody knew it was EDS until 2016. I had just had lower lumbar fusion in 2012, and complications started a few days after I got home. I developed severe blood clots in my left leg, from my groin to my ankle... solid clots. I don't remember most of the end of September or first half of October of that year. But that was the year my career as a hairstylist was over. A year later, I met my therapist. She's retiring later this month, and I think I'm ok with that. Yeah, I still have days where I miss standing behind the chair, chatting it up with a client, changing up their hair, seeing them smile afterward... but I don't miss the pain of manually lifting each leg out of my truck after getting home after driving 45 minutes from working 9 hours without a lunch break, having to get help climbing the stairs into the house, and then figuring out what my body can eat without turning against me.
I used to do swimming. Can't do that now cuz of seizures. I used to play the clarinet. Can't do that now cuz I can't stand through a practice. I used to do cross country. Can't do that now without pain or fainting. I used to eat junk. Can't do that now without nausea. I used to do so many things. Can't do them now because of chronic illness. It's so hard. I hate it
I am 52 years old with ehlers, dys auto, Pots hyperadrenic now, secondary adrenal insufficiency. It is so hard for people to understand how devastating it is to our bodies. I watch all your videos You are my little hero. Keep vlogging because you are educating so many young EDSers and I am sure helping others find out they might have EDs. I am hoping that your EDS kind of fades thru your 20's. Did you know many of ours do? My cousin and I will like to start a vlog of having ehlers at our age, she is 62 and what it has been like growing up with it never being acknowledged because it was and unknown in the 60's, 70's and 80's! Also there are a few EDSers that have been as ill as you and now are thriving. I can send you over to them to offer you maybe some ideas. When it gets dark and ugly try to think about how many people you are helping. You help people who are suffering and that you do so well
I feel u girl I have myotonic dystphy and it is genetic and it started to effect me 13 years and I am no battle with IVIG treatment, physio (chest,Nero musuar) respiratory and recation to IVIG treatment where recently has had a impact me because I can't feel my feet and memory loss and shaking episode
Thank you so much for sharing this! I really needed to hear it. I was diagnosed with 3 illnesses when I was 20. They were all painful conditions but I was still able to go to college while also working a full time job. Fast forward a few years and I start getting diagnosed with more and more. It got so bad that I was no longer able to work at all. Now I spend most of my days in bed. I just recently found out the cause of my continuous, severe back pain. I have a condition called Syringomyelia which basically causes cysts (called Syrinxes) to form inside the spinal cord. It's a degenerative condition that can eventually cause paralysis. Which absolutely scares me to death. I'm not allowed to lift, push or pull anything over 8lbs. It's such a rare disease that most doctors have never even heard of it. I also have Degenerative Disk Disease, a bulging disk and arthritis in my back (I'm only 38). I'm now a part time wheelchair user. It's frustrating to look back at my old life and not be able to do any of it. I've lost friends because they can go out and do things that I can't. It's hard not to be sad and depressed all the time. It's nice to know this is a normal feeling and that I'm not alone in this. So again, thank you!!
Hello, I'm in a very similar predicament at age 40! So far Surgeons are far too scared to operate & it's just honestly depressing & frustrating!!! I know I'll never get to how I was pre-injury/condition,, but I know it can be far better than it is now. I'm a generally positive person w/a good support system but I recently feel so hopeless. I just really related to what you said, if you'd like to chat further I'm on Instagram @chronicallytwisted Amanda
I agree with all of this. I went through the whole process the same. Luckily within half a year / a year I was able to see things from another perspective. I had to give up my sport too. I defined myself as an athlete. And needed that half a year / year to figure out who I was. Actually, I’m still figuring this out 113 years later. And after that initial period I started my “new” life. And I too, can genuinely say: I am a better person since after I got sick! I am happy with who I am! I would love to be able to do more. Since I can’t work, study and spend most of my time in bed due to excruciating pain and a huge lack of energy. The times when I have energy I love to do things with my husband/friends/family. And I enjoy those moments so much more than before! Even with a chronic illness, which for some people can cause a LOT of pain, including you and me, life can still be very wonderful! I love my life!
Great video! It is very true about the grieving process and it is important for us to let ourselves feel that somewhat. But it is also important for us to move on the best we can.
They said I wasn't normal after they told me I was paralyzed and I didn't seem to care. But it's hard for me to see someone else go through stuff.. What does probably hurt most is how people don't seem to come around anymore. But hey that's their loss
Wish the MD's would listen to you. At 58 I went from "just asthma", riding bike,rehabbing old house, hiking, working as RN and doing advocacy. Then pain, fatigue, weakness and brain fog hit,PCP after PCP said nothing was REALLY wrong, just old, fat, need to suck it up buttercup, push through it, women who have fatigue and weakness are just depressed,take vitamins, take fish oil and my favorite"I don't know, doesn't seem serious though" 18 mos later was told Inclusion Body Myositis, so sorry no treatment,no cure, progressive so how about I send you to palliative medicine? 3 neuros later when I wouldn't submit to another muscle biopsy he said now he doesn't know what it is, doesn't care that now I need O2 and bipap when I sleep or how I feel. In the midst of all this, I didn't risk crosscountry skiing this year as can't handle another fracture, can't bike ride for lack of balance or hike in the spring woods, 2.5 yrs of no income and being told by SSDI I should be able to do SOMETHING... yeah I am mourning the lose of a whole life and struggling to even get through a day and like you said friends go away, even at my age when you aren't fun anymore.Because I was healthy, strong and active all my life some have said "you will be fine in a few months, not a big deal" and that hurts more than the loneliness. While your parents bore the brunt of health worries when you were little and no doubt support you now, is really painful to be the mom struggling to not be a burden but needing WAY more help than I am getting and being terrified of the future, fighting with providers and mourning so so much of me gone. The point is grief and pain is real, MD's need to understand this.
I relate to so much of your story. Especially Drs tell us nurses that we don't know what we are feeling. Losing the ability to work, yet not able to be on disability to help the family with the financial burden. And feeling like a burden to the family, and needing more help than you're getting. I am definitely in morning right now.
I feel u soooooo much that I wanna huge you and cry, what you are saying is exact same as my words. I wish I could talk to you for hours. Hope you stay happy and awesome like you are.
I have always been in pain, weak but still ignored it and tried my best to continue on with life. Nowadays I am all about herbal medicine/trying to live the best life I can. I see what you mean though. I have never been able to be as active as some EDSers say they were. Blessings! You are so strong!
(Find the things in your life that make you happy ) thanks for that reminder .... I sometimes forget about what I have ,in my family and friends God bless
life is hard , and it can wear you down . there is a brighter side that is Jesus hold on to his nail scared hand , lean on him . I've had grief at 10 yrs old when Jesus took my angel , my grandma to heaven , I was upset , mad at him but I did forgive and let Jesus work thru the pain and with me . my prayers go out to you
Hi Mickey, Did you have moments of lose where you knew that it was the last time you would be doing some activity; like the last time you would be on the ice or the last time in the dance studio. Or did it come on so sudden that you didn't get the closure you might have gotten if you could plan your exit??
So this video popped up in my recommended a week ago and I popped it into my "watch later" playlist and its just been sitting there...until one of my subscribers shared this link with me and really encouraged me to watch your channel, so a number of things have been pointing me here. 😉 This is such an important video. Thank you for talking about the real and the hard stuff. ❤️ The loss and the grief are hard as hell. Your honesty on this really helps people - like me. Thank you.
this video was so heart felt i had to give up my dreams and you absolutely put it into words i could not express. this video mean alot to me thank you for making it...
I didn't have many symptoms start until i was 23. Just out of college, just gotten my real estate license and was so ready to start my life and then everything just slowly stopped. The pain started to take over and the things that I loved to do just kinda faded into the background of my life. I let my real estate license expire because going out of the house before being on medication was almost impossible and you can't sell houses from your bedroom. Friends disappeared because they couldn't see what was wrong with me and why I wasn't there anymore... Invisible illness was somehow imaginary illness to them. I started dance at age 3... So it's been hardest I think to have lost that ability to just dance. It's taken my doctors 10 years to start getting actual answers for what's wrong with me grieving is not even enough of a word on some days. The one thing the my illnesses haven't taken away is my ability to sing. There are days where that's been the only thing that has saved me.
I didn't realise I was grieving until I saw this video. I was just wondering why I'm crying my eyes out and feeling so hopeless on my bad days. I thought I was just weak and feeling sorry for myself. I hope I can find answers and joy on the days when I cannot do much.
Im sorry that you're grieving, but I'm glad maybe this video helped you process some of those emotions. Just remember that grief is a natural process and doesn't only accompany death. It is not something to be ashamed of, but rather felt and worked through. Like the grief you feel when a loved one dies, it doesn't ever completely go away. However, it DOES get better and the more you allow yourself to feel, the lighter the weight gets. Sending you a little hug tonight
@@LifewithStripes Thank you for your kind words, feels amazing to not be alone with this.
I so appreciate your videos, especially today’s. I have a daughter who is 17 with hEDS with Gastroparesis and MCAS. She also has a rare disease called CRMO. She has lost her old life and still working to define her new life. I hope to try to get her to watch your videos... ❤️
I love you, Mickey 💜 I can relate to this video so much. The pain and grief of my life before being sick never really goes away, and I’m still learning to find joy in the life I have now ❤️
I needed this today. Had a bad appt yesterday. Rheumatologist had thought I had rheumatoid arthritis but nothing we have done that past 3 years has helped. So now I'm being retested for lupus.. I also have fibromyalgia, which she agreed is getting worse. I'm tired of being sick.
I have definitely gone through this as well. I have both POTS and EDS and my life before getting sick was taken away. All my friends, social life, health, dreams, and everything. You kind of just have to relearn life and figure out how to deal with everything. Thank you for this video!
Thanks for making this. I can totally relate. I have CF and like you, I started out "normal" and slowly had to give things up overtime. Eventually getting a transplant. I know have chronic rejection and am needing a second transplant. This time around it is sooooo much harder. I got a taste of healthy life and I loved it! I went from having friends, a full time job and living on my own to quitting my job, moving back home and pretty much only seeing my family each day. I really feel for you and know you are not alone!
The way of your talk is very beautiful I love it very much
Glad you made this video bc it describes the struggles and process one must go thru when you are forced to find a "new you". Gotta say goodbye to the old me first. Who wouldn't be depressed but it has to be worked thru in order to grow.
So true I went through that as well
I wish my younger self was told these things. I always said to other people that I can’t change being sick but I accept it and I’ve learned to live with it...but I didn’t really. I’ve only recently, after almost 10 years, truly started to accept that I’m not that same kid that built robots or ran instead of walked to the other side of the store because it was more fun. I have a much smaller limit of what I can physically do but it doesn’t mean those achievements I want can’t happen, they will just take longer and I need to be honest with myself about what I can tolerate.
Grief is absolutely the right word. You can’t just shove those feelings aside and move on, you have to come to terms with your new reality to be able to build a happy and achievable life for yourself.
Thank you for posting this video
I came across this in my recommended and I was having one of my worst days and this is truely what I needed to hear right now thank you much love to you and all fellow zebras xx
Im so sry ur having such an awful day :( im disabled w incurable chronic illnesses so i can def understand. I really hope n pray tommorrow is a much better day!! 💜🙏
Joy Elizabeth thank you so much beautiful you too! 💜
@@sarrahagnew3001 thank u!!! 💜
I have a couple of chronic illness, but this hit me on an even broader level. I divorced four years ago after twelve years and two children. The adjustment to a new life, to relearning how to really live, ah! That was so difficult and painful. It still is. This was a great word of encouragement.
I have to get surgery on both my shoulders and that causes so much physical and emotional pain. People don’t understand how painful dislocations and subluxations and just getting out of bed is. Thank you for making my feeling valid Mickey ❤️
Ugh I relate so so much. I just got diagnosed but I had to leave synchronized swimming before due to the constant dislocations and pain. Pre-sick I was a four-time Jr Olympian, now I'm just sick with a bad body. Your channel has helped me a ton, I'm also from MN and I have hEDS. I just got into Mayo for treatment and your vids have helped me be less anxious. You are one of the only health youtubers who I can relate to, thank you so much for sticking around even if you are tired!
I may be crippled from EDS and unable to do things I used to do. But becoming disabled also opened a whole new world with new interests and new friends and a wonderful community! The one thing I miss from my old life is the ability to work and have a real income instead of relying on disability benefits that isn’t really enough to cover the living expenses, and hence having to constantly worry about your economy, all because of a situation you did not choose! But at least I have worked, I worked until I was almost 26 so at least I got to try it, unlike many others with EDS or other conditions. But the loss of my ability to work has definitely been the worst blow for me since my EDS started kicking my butt
Wise words, Mickey and thank you xxxxxxxxx
Wow, this is truly beautiful. I have EDS as well, and was expecting to cry at this video, but your optimism and positivity was so incredible. You have such a way with words! Sending gentle hugs, fellow zebra xxx
For being so young, you are very smart beyond your age. You have had experiences that most will never have to see or go through. Thank you so much for sharing.
Omg you put into words exactly what I’ve been dealing with. This was so helpful. I teared up.
Thank you for elaborating on this topic. I am going through that grieving process right now, and I was just talking about it with my husband. I have been sick for years, but have never been able to be diagnosed. So up until recently I went to doctor after doctor with the hopes of getting diagnosed and getting better. Just in the past few weeks I have decided to change my mind set and accept that this is my life and grieving my old life is so hard. I am working on opening my own counseling private practice in the fall focusing on chronic pain/chronic counseling and I have this topic on my list of things to research. Grieving your old and healthy life is so difficult for so many to understand.
I love you Mickey!!! I’m feel the exact same way. It’s totally not fair that we can’t do the things we love anymore. I totally understand where you are coming from. ❤️❤️❤️❤️❤️
I've been watching your videos lately quite often - I've got hEDS, uncontrolled asthma, epilepsy and that's mostly just the tip of the iceberg as we are still in the phase of finding out what's actually going on. Similar to you, I've been a really active child, doing dance, kung fu and playing instruments. These things were totally my passion and losing them one by one is emotionally so painful. And nobody is really talking about this point in chronic illnesses and beside my chronic pain, fatigue and numbness, I almost feel like, that living with this loss is even harder for me right now. I've been looking for other things, but I haven't found anything yet.
And with this, I just wanted to thank you so much for talking about that! For me, it's spot on and I can relate fully to you - you gave me encouragement not to give up.
This reminded me of the new movie in 2019 *FIVE FEET APART* OMG that's so cool her life and the girl on the movie
Excellent video 👍 I can’t remember ever being healthy or not in pain. I’m 50 now and only recently GOT my eds dx, but I always knew there was Something wrong, but drs back then just brushed me off. I’ve never NOT been in pain. So I can’t grieve that. And I never could stick with a sport long enuf to get good, I would always get injured, dislocate etc. so I turned to art. And I still do my art it just is harder. But I do get the grieving- when I got the dx it was both validating, yet also devastating if that makes sense.
Mickey you have expressed what all of us with true life altering illnesses need to hear. Thank you for your strength, and heart. Evil causes all things that are bad, wrong, hurtful, painful etc and yet God will allow faith in Him to use the results for good. You are clearly an example of that. You have given me strength just by your example. Thank you!
I do not have e.d.s. but I had heart surgery and still have multiple defects. Due to a rare chromosomal defect. Also lost my vision due to health issues one being Optic Neuritis. It came back in 2011 but this time it would not get better. And we tried with doctors for years. I never fully grieved my eyesight and then found out I had Turners Syndrome and will not have bio babies and it all blew up in bad eating disorder and depression. I worked since 2017 to pull myself out. And I can say with the support of others I am so much more at peace daily. Peace, serenity, and meditation changed my life. Finding the lord again. Thank you for your honesty. So so very true. You have to feel it first to let it go ...
I so feel you on this video. I'm 5 years into my diagnosis and I didn't realize how hard the grieving process can be. I have hEDS and a lot of the comorbid conditions and I can no longer do as much.
Even at my age (I am your parents age or around there!) this was a good reminder of how to take care of your mental health for whatever condition you have (I have EDS and more). Eventually when I get to start my channel we can collaborate on something, I am here in Ohio:)
VERY WISE, and true. I had 40 years of perfect health and an active life. Then my life changed drastically. You are a very wise, real and positive young lady. You’ll always find your passions in life and pursue them on your terms and succeed. 👍💜
So much said in this. Grief is very hard to deal with and like you said everyone grieves differently. You were mourning you. Chronic illness gives you a different perspective on everything. Find a way to find joy in everyday little things. Sometimes the little things can make a difference.
I really appreciate this video I have Chronic Lyme disease, POTS, and HEDS and I’m dancer! Dance is my way of escaping from things! I’m so sorry you had to stop dancing and figure skating I know how special those things are! However I loved this topic you talked about it was so real and inspiring and it’s something that others need to know that they are not alone in! 💚💚
Yes! Equestrian was my thing and I was about to try out for the Olympic Games but had a really exhausting and difficult year so I hung up my bridle and never rode again. Riding was exactly what you said, it not only was my escape, but my therapy. I think back to taking my horse out on a trail and riding into a beautiful sunset and I would talk to her. Who needs a therapist when you have a horse? She was a very good listener 😉 I had a hard family situation with the verbal/mental abuse from my insane dad and my absentee mom who did everything a mother does and more, but she wasn't affectionate. So being able to just leave the house when sh** would go down with me and my parents (dad mostly) and take my horse out and ride until the sun went down was absolutely amazing. And I used to keep a journal. I would do that now but I have too much pain writing, no computer that has a keyboard right now (it's a Mac Mini). I have no clue how I would do it on my phone so I wind up doing this in a comment or post, I tell my life story because I forget I'm not journaling. So I apologise for the insanely long comment. I just liked your comment because I rode and that was my escape and my therapy, I hadn't thought about it like that in years. Thank you for putting it back in my brain!
I relate SO hard to this. I have multiple chronic illnesses, including EDS, but my "main" one is an extremely rare bone disease called osteogenesis imperfecta, yes I am "missses glass -_-", and it makes my bones incredibly weak and easy to break along with other symptoms including 24/7 bone pain. But I was able to dance and NOT break anything only by the grace of God! But I danced for *10* years! And it was incredible to be able to do that because I really couldn't do much else. But my Junior year of high school when my health PLUMMETED for no apparent reason, my bone was so bad that I couldn't even go to school for about 3 weeks, moving was painful, I was tested for bone cancer, and I had to quit dance. The only thing that was mine and made me feel somewhat "normal" was gone now. And my best friend was in dance with me and when I had to quit dance it was in the middle of the competition season and I had to sit in the audience for the first time and watch instead of being on stage. That was one of the *hardest* things I have ever had to do.
This is just what I needed. You are helping me so much through your videos! Thank you for everything!
Thank you so much for this video ive been sick for about a year now. And slowly i stop activities i used to do. Dont notice how much of a change until i look back and compare then to now. But it is sad. A loss of what life used to be. What my abilities used to be. Thank you
I agree with u that being healthy then becoming chronically ill is harder than having it from an early age. I have had juvenile rheumatoid arthritis since I was 2 and have never known anything different. So 14 surgeries and 4 joint replacements later I’m still hanging in there! However I also grieved for the life I could have had. Seeing people and friends do things like running or even just walking without pain was difficult. I also have depression controlled with medication as a result of the arthritis and limitations and chronic pain. However like u said the grieving process doesn’t last forever and I have fun no matter where I am or what I’m doing. Life is too short to live in a state of why me and what ifs! Thank you for this video. U were well spoken and encouraging to others as always!
Before I read an article about grieving the loss of your healthy life and everything you took for granted I didn't think it was a thing. But while I was reading it, all my feelings fell into place and I could relate to it so much. I'm still working my way through it and as you said, some days are better than others. At first the most confronting thing were my peers, they could do everything they wanted and I couldn't, but that doesn't bother me as much as of now. The thing that triggers me now is seeing elderly people walking and doing all these thing that I can't do anymore (I turn 25 this year). I feel like it has to be the other way around, I should be the one walking long distances and they should be the ones sitting at home, thinking about what they could do when they were younger. But it's a bad thought and I try to turn it around and be happy for them, that they are still healthy enough to do the things they want to.
But it's a proces and eventually I will get there.
I hope you will find peace with it as well :), keep fighting!
I totally understand what you mean..I didn't get sick til my late 20s, now at 33 I've had to quit working, use a wheelchair so many things I can't do anymore. I don't have eds but I have chronic pain and Multiple physical disabilities. I do get depressed Alot about it. I'm sad your having to go through this so young . Xo
I get it, I was a Kung Fu instructor and a Belly Dancer, I rode quads...now I can’t...I’m still working through the anger. Your so resilient! Keep up the good work on here.
Totally relate and understand. It's hard to remember what things used to be like! I try not to think about it too much. I'm sorry that you have to understand what this is like. But thank you for being honest and sharing your heart with us. :)
Thank you so much, Mickey. This is exactly what I'm going through right now grieving the loss of so many things especially my health. I know I need to work on acceptance. But it's hard and I feel very isolated.
Thank your for sharing this side of chronic illness, it's something everyone should be aware of, but don't always see.
💗💗💗 I'm not "as sick" as you. I'm mentally processing my "new" diagnosis. My nurse told me a lot of the problem is that I still havnt dealt with the trama. The trauma of being sick and being sick for so long without a diagnosis. The emotions are insane.
Been there done that. My situation was completely different, but this is completely relateable. I say that peace is a process, the process is a choice. Someone could absolutely stay in their grief forever, but if you work through it, it does get better. You'll have a different life, but it will still be okay. Having gone through one myself, I think that everyone will go through some version of this process at least once in life. I wouldn't wish it on my worst enemy, but I wouldn't trade how it changed me for anything.
I feel a lot about the same way with my IBS when I was younger I used to go ride bikes with friends and stuff and some days I can barely leave my bathroom now the worst part of it for me was having my doctors give up
Very well said. I've been trying to explain this to my family. It took me a while to realize I was grieving my old life, my life with less pain and with sports. As soon as I realized I was grieving, I allowed myself to feel the pain. And then I was able to move forward. But you're right, it comes in waves.
I love your videos, your empathy for others in spite of your own struggles. I understand, been there. Having friends abandon you when you could REALLY use their support is very hard to deal with. You are in my thoughts, and prayers. Bless you for the wonderful young lady that you are!
I think you done an amazing job at explaining how the rollercoaster ride goes. The ups and down and the figjt that you do find again some how. Bit also its people like yrself thats so many others that are finding it hard and lets us feel less alone. Because we lose so much and friends is so nice to feel close to someone even if they dont know you.
You are amazing, i wish to see more of you on here but i know u got to do it when you and and you may not was it all out there even though you are so open.
💕💕
I can't thank you enough for sharing this. This is such a important topic which I've been struggling with. Thank you and I appreciate you continuing to use your platform to spread awareness about chronic illnesses!
thank you for sharing this Mickey. 100% relatable 💚💚
I see a new movie that can be made, thats a tough path you had, and you change it around, stay happy... jeeze id be your friend, like who wouldn’t want to be your friend. Keep being awesome
Hey, Mickey. Thank you for sharing this process with us. Each person’s journey is meant to bring them closer to God and to bring Him glory. You’re definitely not wasting the gifts He has given you and your testimony is more powerful than you think.
You are so amazing and inspirational!
We all go through this in our own way. Grief and sadness go together just like the movie Inside Out. It’s okay to mourn what we lost when we have chronic illnesses 🖤
Thank you for sharing and speaking on this topic. I struggle because of all the unknowns. I’m only a few months into my journey so I have more questions than answers. And maybe it’ll always be that way. I wish I knew if it would get worse, and what that means for me. It’s not something I can talk with anyone about because I just don’t think they’ll understand. It’s a lot to process for sure.
I'm 44. I have been sick all my life, but like you said, I was about to go to the Olympics for equestrian eventing. I had a ton of friends as well. I had four 3 day shows in 4 weeks out of town in the summer when I was just turning 15. Walking 3 different event courses was it. I literally just COULDN'T do that again. The year before I started to have severe narcolepsy so I could barely pull my boots on let alone everything that goes into that (it's a lot!) I hung up my bridle and pushed my responsibility of caring for my 2 horses on to my mom and became really resentful. I didn't mention anything about being way too tired and having brain fog etc because my parents didn't believe anything was wrong with me and I was attention seeking or a hypochondriac. Telling them any complaint never got me to the doctor so I stopped saying anything.
My point is that EDS was why I had severe chronic fatigue which started with narcolepsy which I still have.
I have to REALLY push myself just to take a shower. I absolutely have no energy. I get waves of pep that allows for some cleaning or something but it's been at it's worst the last few years. I pushed myself so hard and I was having an insanely busy social life and man we laughed so hard at everything and I have to agree, close friendships and laughter can be the best medicine. But then I "got" sick. And on top of my Juvenile Rheumatoid Arthritis I was misdiagnosed with and then my EDS I lost (had to stop, my dog grooming business) and then I started having seizures and I've barely gotten out of bed for much at all and my outings have been to the doctor, dentist, etc.
I have been at my sickest the past 3 years, but it's been longer than that when I lost all my "normie" friends and that hit me hard. My illness was a very late diagnosis (I wish I knew how in the world they missed it). I have POTS, MCAS, and Gasteoparesis along with adrenal insufficiency.
I love this video.
I have to learn to grieve the loss of my friends and social life in general. I have a really hard time with grieving food. I was never a foodie, but sitting at a table on holidays or something like that with a plate with nothing on it is so awkward, everything revolves around food. And I also have to learn how to think differently. My 75 year old mom is supporting me and my daughter who does cleaning and caring for the house and takes me to my appointments, she organises everything and does the yard work. I'm waiting for disability to approve my application which will take years. The burden I feel I am to my mom and daughter is really hard to not be drenched in guilt constantly.
I start seeing a counselor tomorrow so this was an excellent video for me just in time. I really appreciate your videos. Oh that's another thing I was thinking from the video. After a career as a nurse for 15 years and as a business owner/operator grooming dogs, and losing my friends and my health and everything that has turned into, I have never had or been interested in anything in my past that are possible to do now. I'm really struggling to get out of bed and can lay around or sleep for a week straight. I'm not depressed so to speak, I'm just existing. I need to get more out of my life. Vlogging would be really fun but I doubt I can talk into a camera and I have no idea how to edit. I can't read anymore because my eyes are awful and both are lazy and I used to really love reading. Anyway, this is stupid long! I am so sorry for rambling. I tend to forget that this isn't a journal entry! Thanks for your vlogs. They are really helpful. EDS awareness month is right around the corner! Take care chickadee! 🦓💪😷✌️
So true!! The grieving is a very important part that you HAVE TO go through to let go of your old life. If you don’t you’ll never be able to embrace your new life. It never goes away because we DON’T know what our progression will be. EDS always has a habit of throwing a 🔧 in the works and SURPRISE you have to deal with that now!! Life can still be very fulfilling. It’s just a new set of challenges. THANKS again for being so encouraging for all of us. Support from other people in the same boat is sooo important!!
Ice freezes 😉 lol You are an inspiration to those out there with chronic illnesses, Stay true to yourself that's all we can do.
I was doing ok until i joined rhe Army and had stress fractures in my hips in training. They couldn't explain why I was still in pain after they healed. I was sent home and that was devastating, but i went to school to be an aircraft mechanic for 2 years. A year of working and then i had hip surgery for dysplasia. Its hard to tell people that losing the army and being a mechanic was losing who i am. Im learning to try and find joy in new things.
I really needed to see this today as after 9 years I'm still drowning💔 Thank you!
I love this video! In 2016 I was really, really sick and it was without a doubt the hardest year of my life. I was dealing with a lot of depression and grief over losing the life and happiness I had when I was healthy. My health fluctuates and probably always will, but I'm getting better at finding joy in what I have and what I can do at any given time.
This is so sad to watch you are such a amazing young lady wow what a inspiration!!! Your one brave lady
Thanks a lot for this video. I have stripes to. I totally understand the part where you talking about grife it's so true, but also so hard. I was very positive in the begin of my sickness. Now it's going worse with me and I find it hard to accept it. I know it takes time. And I hope that someday I can be positive again :)
Thank you for making this video. I am one year to losing some of the use in my hands due to numbness abs weakness, such was finally linked to hEDS. I was diagnosed in May. I'm using forearm crutches for mobility now. In the course of less than a year I went from chronic but manageable pain to severe complications. I'm scared of no longer being able to dance again. And just today, one of my doctors told me there's nothing else they can do. So yeah, I'm kinda in the thick of it now, and this video came at the right time
love from boston!
stay strong! we love youuuuuuu
I totally get that. I was diagnosed with stage 4 cancer almost 6 years ago. I refer to things in my healthy past as BC days. It sucks and I struggle a ton with major depression and a few other fun things. I also think that I struggle with.... ok, so I had to deal with being told that I am dieing, but I’m still here. I can’t do anything that I used to do, so it’s not really like “living”. This whole being terminally ill thing is so complex and you don’t know anything about it unless you go through it. I hope y’all never have to.
Stay strong darling. I know it may seem so incredibly cliche to say because I know you've been told it a million times. My lost fiance to cancer, it's a terrible disease that's incredibly unfair. I remember the mental battle that she had to go through and you're right no one should ever have to go through that. That limbo. The I'm here but I'm not, but, we are all in that state every day. At any point any one on this planet could die at any moment. Please do not waste this precious time you have left on this beautiful earth with such a burden on your heart. Embrace those around you, take in everything positive that you can. I know it's so hard to put the negative thoughts out of your mind. You just have to wake up every day and say today is a good day for a good day. Every day that you wake up is another chance for a good day. Reguardless of your health situation. I really hope this message reaches you in better spirits. Gentle hugs ~Michelle
Yes, girl, so much yes. I have cEDS/POTS too 💜. Grieving has been a really harsh journey, but it's definitely getting better... I hit my "wall" after a few years at my dream job (lab scientist) after getting my bachelor's degree. It's been a little over a year since I had to stop working. My hobbies have become harder, I need a wheelchair for "long" outings, my mind just isn't sharp anymore. It's hard, and it sucks, feeling like your body has robbed you of the ability to just do the things you want to do. But like you said, I'm finding new ways to still "be me" in the ways I'm able 💜 stay strong zebra sister, thank you for posting this
I miss my old self to girl, now it's all doctors and testing for a lot of my time. I can so relate to what you're saying but also I understand that I have things that I can still appreciate but don't have to do with my medical life. Some days of have hang in there till you can find your rainbow
ive never related to something more, i too have eds and pots and chronic pain i get u girly 💕
I really like your hair & color is great too!
I was 42 when my health was turned upside down by EDS. Only thing was, nobody knew it was EDS until 2016. I had just had lower lumbar fusion in 2012, and complications started a few days after I got home. I developed severe blood clots in my left leg, from my groin to my ankle... solid clots. I don't remember most of the end of September or first half of October of that year. But that was the year my career as a hairstylist was over. A year later, I met my therapist. She's retiring later this month, and I think I'm ok with that. Yeah, I still have days where I miss standing behind the chair, chatting it up with a client, changing up their hair, seeing them smile afterward... but I don't miss the pain of manually lifting each leg out of my truck after getting home after driving 45 minutes from working 9 hours without a lunch break, having to get help climbing the stairs into the house, and then figuring out what my body can eat without turning against me.
I used to do swimming. Can't do that now cuz of seizures.
I used to play the clarinet. Can't do that now cuz I can't stand through a practice.
I used to do cross country. Can't do that now without pain or fainting.
I used to eat junk. Can't do that now without nausea.
I used to do so many things. Can't do them now because of chronic illness.
It's so hard. I hate it
I am 52 years old with ehlers, dys auto, Pots hyperadrenic now, secondary adrenal insufficiency. It is so hard for people to understand how devastating it is to our bodies.
I watch all your videos
You are my little hero.
Keep vlogging because you are educating so many young EDSers and I am sure helping others find out they might have EDs.
I am hoping that your EDS kind of fades thru your 20's. Did you know many of ours do?
My cousin and I will like to start a vlog of having ehlers at our age, she is 62 and what it has been like growing up with it never being acknowledged because it was and unknown in the 60's, 70's and 80's!
Also there are a few EDSers that have been as ill as you and now are thriving. I can send you over to them to offer you maybe some ideas.
When it gets dark and ugly try to think about how many people you are helping. You help people who are suffering and that you do so well
No one ever talks about this I just got a diagnosis and they are questioning what type but think it is some form of EDS this touched me
I feel u girl I have myotonic dystphy and it is genetic and it started to effect me 13 years and I am no battle with IVIG treatment, physio (chest,Nero musuar) respiratory and recation to IVIG treatment where recently has had a impact me because I can't feel my feet and memory loss and shaking episode
Thank you so much for sharing this! I really needed to hear it. I was diagnosed with 3 illnesses when I was 20. They were all painful conditions but I was still able to go to college while also working a full time job. Fast forward a few years and I start getting diagnosed with more and more. It got so bad that I was no longer able to work at all. Now I spend most of my days in bed. I just recently found out the cause of my continuous, severe back pain. I have a condition called Syringomyelia which basically causes cysts (called Syrinxes) to form inside the spinal cord. It's a degenerative condition that can eventually cause paralysis. Which absolutely scares me to death. I'm not allowed to lift, push or pull anything over 8lbs. It's such a rare disease that most doctors have never even heard of it. I also have Degenerative Disk Disease, a bulging disk and arthritis in my back (I'm only 38). I'm now a part time wheelchair user. It's frustrating to look back at my old life and not be able to do any of it. I've lost friends because they can go out and do things that I can't. It's hard not to be sad and depressed all the time. It's nice to know this is a normal feeling and that I'm not alone in this. So again, thank you!!
Hello, I'm in a very similar predicament at age 40! So far Surgeons are far too scared to operate & it's just honestly depressing & frustrating!!! I know I'll never get to how I was pre-injury/condition,, but I know it can be far better than it is now. I'm a generally positive person w/a good support system but I recently feel so hopeless. I just really related to what you said, if you'd like to chat further I'm on Instagram @chronicallytwisted Amanda
I agree with all of this. I went through the whole process the same. Luckily within half a year / a year I was able to see things from another perspective. I had to give up my sport too. I defined myself as an athlete. And needed that half a year / year to figure out who I was. Actually, I’m still figuring this out 113 years later. And after that initial period I started my “new” life. And I too, can genuinely say: I am a better person since after I got sick! I am happy with who I am! I would love to be able to do more. Since I can’t work, study and spend most of my time in bed due to excruciating pain and a huge lack of energy. The times when I have energy I love to do things with my husband/friends/family. And I enjoy those moments so much more than before! Even with a chronic illness, which for some people can cause a LOT of pain, including you and me, life can still be very wonderful! I love my life!
Thank you for talking about this. It truly is a grieving process.
love you
Very inspirational video
Wait a sec ur from minnesota??? Girl me too. 👌👌
Great video! It is very true about the grieving process and it is important for us to let ourselves feel that somewhat. But it is also important for us to move on the best we can.
They said I wasn't normal after they told me I was paralyzed and I didn't seem to care. But it's hard for me to see someone else go through stuff.. What does probably hurt most is how people don't seem to come around anymore. But hey that's their loss
Wish the MD's would listen to you. At 58 I went from "just asthma", riding bike,rehabbing old house, hiking, working as RN and doing advocacy. Then pain, fatigue, weakness and brain fog hit,PCP after PCP said nothing was REALLY wrong, just old, fat, need to suck it up buttercup, push through it, women who have fatigue and weakness are just depressed,take vitamins, take fish oil and my favorite"I don't know, doesn't seem serious though" 18 mos later was told Inclusion Body Myositis, so sorry no treatment,no cure, progressive so how about I send you to palliative medicine? 3 neuros later when I wouldn't submit to another muscle biopsy he said now he doesn't know what it is, doesn't care that now I need O2 and bipap when I sleep or how I feel. In the midst of all this, I didn't risk crosscountry skiing this year as can't handle another fracture, can't bike ride for lack of balance or hike in the spring woods, 2.5 yrs of no income and being told by SSDI I should be able to do SOMETHING... yeah I am mourning the lose of a whole life and struggling to even get through a day and like you said friends go away, even at my age when you aren't fun anymore.Because I was healthy, strong and active all my life some have said "you will be fine in a few months, not a big deal" and that hurts more than the loneliness. While your parents bore the brunt of health worries when you were little and no doubt support you now, is really painful to be the mom struggling to not be a burden but needing WAY more help than I am getting and being terrified of the future, fighting with providers and mourning so so much of me gone. The point is grief and pain is real, MD's need to understand this.
I relate to so much of your story. Especially Drs tell us nurses that we don't know what we are feeling. Losing the ability to work, yet not able to be on disability to help the family with the financial burden. And feeling like a burden to the family, and needing more help than you're getting. I am definitely in morning right now.
I feel u soooooo much that I wanna huge you and cry, what you are saying is exact same as my words. I wish I could talk to you for hours. Hope you stay happy and awesome like you are.
Have a wonderful night 🦋
Thanks for sharing that. It helps people to know that.
I have always been in pain, weak but still ignored it and tried my best to continue on with life. Nowadays I am all about herbal medicine/trying to live the best life I can. I see what you mean though. I have never been able to be as active as some EDSers say they were. Blessings! You are so strong!
I Love your videos
I hope you are the beat you can be
I feel this
I needed this today.
Your story resonates with me
There are several activities i had to give up.
(Find the things in your life that make you happy ) thanks for that reminder .... I sometimes forget about what I have ,in my family and friends God bless
life is hard , and it can wear you down . there is a brighter side that is Jesus hold on to his nail scared hand , lean on him . I've had grief at 10 yrs old when Jesus took my angel , my grandma to heaven , I was upset , mad at him but I did forgive and let Jesus work thru the pain and with me . my prayers go out to you
I love you from iraq
Hi Mickey, Did you have moments of lose where you knew that it was the last time you would be doing some activity; like the last time you would be on the ice or the last time in the dance studio. Or did it come on so sudden that you didn't get the closure you might have gotten if you could plan your exit??
Good message for everybody, see the good in life and behold it'''''''''''