Managing long term illnesses at 31 while losing mobility quickly
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Lanadragon21
Posts: 11 Member
Hi,
I’m not usually very active on social medial but I’m going way outside of my comfort zone. I’m trying to stay in the best physical shape I can while I’m losing mobility rather quickly.
I have multiple long term illnesses including an unknown neurological disorder, Ehlers Danlos type 3 and 4 and heart and blood pressure issues. I ended up being diagnosed a decade to late to do much about any of it. I was never supposed to lift anything over 10-20 lb. I didn’t know until I was 26 years old. It started with chronic pain as a toddler, being sick and run down constantly, migraines, nose bleeds and several other odd symptoms.
At the moment I’m losing the feeling especially in my lower limbs and it’s starting in my face occasionally affecting my speech. It’s more like permanent pins and needles. Another issue is my joints are all falling apart quickly and heart has its own way of operating.
I just went on CPP it was not an easy adjustment. Although I’m grateful that I receive it because my body really did fail me sadly by the age of 26. It was like I was coaching therapeutic riding and beginner show riding and working at a bank part time with some issues but I went so downhill so fast. I knew I was going to be on disability at some point I just didn’t think it would happen so fast. I worked until I collapsed 3 times.
And to boot my x husband didn’t want to think anything was that wrong. He thought it could all be taken care of with medication and I’d be magically cured.
In the end it really came down to he was becoming embarrassed by my eventual need to use a cane and braces on my joints. I hid this until I literally couldn’t. Sober he would say I love you no matter what l, I’ll take care of you things like that. Drunk he would call me names and his true feelings and what his buddies thought came out. As I have become more ill over time my movements have become more spasmodic. My x husband did not want anyone to think he was with someone that had any issues. He was especially concerned people would say I had intellectual issues. It made me feel very, very bad about myself.
I pulled out of the relationship after 13 years. Partly I stayed because I was 15 when we got together and 19 when married. I really tried. I have changed my life and just got married to the love of my life in July. He supports me 100%. He has really helped me work on my self esteem and is also my primary caregiver. He shares that role with my mother.
I’m using this app to take back what control I can. I used to be in amazing shape before I got sick. I was doing better getting around when I was a bit lighter. It’s good to be accountable and I love how organized it is. I have a plan I follow it and record everything.
I’m not sure if there’s anyone here in the same boat or has anything in common. I’m open to advice, support, questions, if someone has more information or a better way of doing things please do let me know,
Cheers
I’m not usually very active on social medial but I’m going way outside of my comfort zone. I’m trying to stay in the best physical shape I can while I’m losing mobility rather quickly.
I have multiple long term illnesses including an unknown neurological disorder, Ehlers Danlos type 3 and 4 and heart and blood pressure issues. I ended up being diagnosed a decade to late to do much about any of it. I was never supposed to lift anything over 10-20 lb. I didn’t know until I was 26 years old. It started with chronic pain as a toddler, being sick and run down constantly, migraines, nose bleeds and several other odd symptoms.
At the moment I’m losing the feeling especially in my lower limbs and it’s starting in my face occasionally affecting my speech. It’s more like permanent pins and needles. Another issue is my joints are all falling apart quickly and heart has its own way of operating.
I just went on CPP it was not an easy adjustment. Although I’m grateful that I receive it because my body really did fail me sadly by the age of 26. It was like I was coaching therapeutic riding and beginner show riding and working at a bank part time with some issues but I went so downhill so fast. I knew I was going to be on disability at some point I just didn’t think it would happen so fast. I worked until I collapsed 3 times.
And to boot my x husband didn’t want to think anything was that wrong. He thought it could all be taken care of with medication and I’d be magically cured.
In the end it really came down to he was becoming embarrassed by my eventual need to use a cane and braces on my joints. I hid this until I literally couldn’t. Sober he would say I love you no matter what l, I’ll take care of you things like that. Drunk he would call me names and his true feelings and what his buddies thought came out. As I have become more ill over time my movements have become more spasmodic. My x husband did not want anyone to think he was with someone that had any issues. He was especially concerned people would say I had intellectual issues. It made me feel very, very bad about myself.
I pulled out of the relationship after 13 years. Partly I stayed because I was 15 when we got together and 19 when married. I really tried. I have changed my life and just got married to the love of my life in July. He supports me 100%. He has really helped me work on my self esteem and is also my primary caregiver. He shares that role with my mother.
I’m using this app to take back what control I can. I used to be in amazing shape before I got sick. I was doing better getting around when I was a bit lighter. It’s good to be accountable and I love how organized it is. I have a plan I follow it and record everything.
I’m not sure if there’s anyone here in the same boat or has anything in common. I’m open to advice, support, questions, if someone has more information or a better way of doing things please do let me know,
Cheers
22
Replies
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Your post touched me. I have no knowlege of your issues but want to wish you well, and think you should just take one day at a time and do what you can. Best.5
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So very happy that you found someone who loves you as you are, and can be with you and give you such great support! I wish you the best dealing with your health issues. I’m sure it can be very trying , especially being such a young age. Staying positive can help quite a bit, but it’s not always easy. My very best regards to you.2
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My biggest compliment is my positive attitude which tells me I’m on the right track. I’m very lucky and just take each day at a time and I’m grateful every day I wake up next to my new husband! I said I’d never get married again unless it was him which is hilarious.
After dealing with a man who was embarrassed by me this has been amazing and I feel like the Queen of Sheba! Thanks5 -
I can only offer my sympathy for your struggle, and I'm so glad you've found someone who supports you. All I can offer is a recommendation for someone that maybe you can relate to - Martina from Simon and Martina on Youtube also has Ehlers-Danlos and she talks about it on the channel sometimes:
https://www.youtube.com/watch?v=DnT3FgV7pzU 3 -
You have a neurological disorder with pins and needles sensation, and want to remain as active as you can? Well, everyone is affected differently - but I'll chime in if it helps in any way. I lost the ability to walk one evening, it came on quickly as I started to realize I was having trouble writing and typing because of pins and needles sensations. Thankfully, I could walk again after about 4 hours in the hospital, and write/type properly again after about 2 months. But the accompanying fatigue was absolutely brutal. Promptly diagnosed with MS - in hindsight I've had symptoms since I was 25 (I'm now in my 40s). Back then, it was very common to go undiagnosed. And it's also pretty common to have a bad flare up when under lots of stress. My wife had already left me to "pursue relationships with other men". I had been her primary caregiver over many years of postpartum depression into full blown depression and the settlement was as lopsided as you can expect. She remains intentionally under-employed, maximizing her support payments. I get it that life isn't fair, but the constant fatigue was especially disheartening. So after the pounds quickly packed on (not an extreme amount, but enough to concern me) - I resolved to workout even if I was tired. It didn't, as many claim and encourage, eventually give me more energy. I was still tired all the time. But I worked out anyway. And though I have lingering "drop-foot" on my left leg (can't effectively run), I've built enough muscle that I at least have more strength and look better in the mirror. The app helps, I've used it on and off since 2011 (and didn't post in forums either until just this year). Sounds like you've got support for your self-esteem, and that's a huge bonus to help you along. Huge. I know the loss of feeling in your face is worrisome (I've previously lost feeling in half my face, including half my tongue) - nerves take a long time to repair themselves, but there's hope it may improve.11
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I have multiple medical conditions as well. Ranging from chronic migraines to allergic reactions to physical stimuli (like water and temperature changes), I also lose consciousness without warning and have been immunosuppressed for 3 years now due to as yet diagnosed auto immune problems. Oh I’m also severely allergic to exercise (not joking I carry epi pens). My problems started just over 7 years ago after the birth of my youngest child, one of the medications I was put on made me gain 25.5kg in 5 months and due to my exercise allergy I can’t do what I would have previously to shift the weight. Thankfully I’d already met/married my husband before I became unwell and he does a lot in terms of making sure I’m adequately supported, like changing his hours so he’s available for the school run as we also have an autistic 9 year old who can’t cope with buses. All I can advise is take the good days when you can and rest up on the not so good days. Feel free to add me4
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Oh and I’m only 322
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Hi there!
I'm 33 and I also have EDS, fibromyalgia, Lyme and two brain lesions that are causing weird neurological symptoms. I have a lot of pain and fatigue, and I use a cane nearly every day. I used a wheelchair for 14 months, then in February of last year, I started getting stronger and began to use my cane more. I have a lot of balance issues so sometimes being active is hard because I can fall. We thought I had MS, but it turns out they have no idea what's going on with my brain since I don't have the right CSF markers.
I thought things would just keep getting worse, but there have been enough ups now for me to continue to hope that I won't always be dependent upon others. I'm not saying that's how things are for you, but if you want a friend, you can add me.
Em 6 -
Thank you very much for sharing stories it’s encouraging! I really appreciate the support. Merry Xmas abd Happy New Year2
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Hello sorry for long wait reply I haven’t been very well. I really really appreciate the support. It’s taken me years to work up to this. I’m usually the one doing the helping, assisting etc but not anymore. I still try to be as independent and helpful to my immediate family as possible. I never felt comfortable reaching out to a support group, I like how this app is taking control, care of yourself and support/motivating. It’s nice to meet other people with similar issues. I am curious if anyone is doing anything better than I am.
Thanks again,
Hope to chat in future5 -
I have Lupus,Sjogrens,Fibromyalgia, and Rheumatoid Arthritis so I have put on weight due to some of my meds and the extreme fatigue I deal with everyday. I am also 66 years old. I just recovered from breaking my wrist.
I didn't do very well through the holiday, but feel motivated to do better. One day at a time.
Thanks for reading.3 -
Oh honey - big hugs! I have had some long term health things starting back in middle school, but they are relatively minor and thankfully I have been able, through trial and error, find ways to stay more functional. It’s so hard when the people around you don’t understand.
The one fitness thing that comes to mind is maybe swimming, if it’s safe with supervision?1 -
I was being tested for MS, textbook symptoms but the neuro found a clean scan of my brain (minus a pineal cyst, no legions). Around this time my breastfed daughter was diagnosed with severe food allergies so I had to cut out many common foods to keep her safe until she could eat solids (she was a year old but her throat was too swollen to swallow). Anyway, once I started reintroducing foods I got to wheat and quickly realized I couldn’t eat it, it royally messed me up. Gluten Ataxia. I don’t have the GI response like someone with Celiacs would have, mine is neurological. Tingling and numbness in extremities, double vision in one eye, phantom water drops on my hand, balance issues, bladder issues, depression, total digestive system shut down (no sounds, no movement, miserable), and many more... all triggered by wheat.Hi there!
I'm 33 and I also have EDS, fibromyalgia, Lyme and two brain lesions that are causing weird neurological symptoms. I have a lot of pain and fatigue, and I use a cane nearly every day. I used a wheelchair for 14 months, then in February of last year, I started getting stronger and began to use my cane more. I have a lot of balance issues so sometimes being active is hard because I can fall. We thought I had MS, but it turns out they have no idea what's going on with my brain since I don't have the right CSF markers.
I thought things would just keep getting worse, but there have been enough ups now for me to continue to hope that I won't always be dependent upon others. I'm not saying that's how things are for you, but if you want a friend, you can add me. Em
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Hey Moonangel12,
Thanks for the post! The dr thought I also had textbook MS and I didn’t realize how much diet can cause flare ups and neurological symptoms.
Congrats on having a baby, I always wanted a baby to be a mum. I’m grateful as hell that my new husband has healthy children and they have a completely absent bio mum. They call me new mum.
That must have been hard for you breast feeding with lots of diet restrictions. I struggle with most of those symptoms but really have been having issues digestive issues although I have mostly stopped wheat. I developed food and med allergies leading to aniphylactic shock which has grown into an almost weekly battle.
Sincerely,
Lanadragon1 -
Moonangel12
Yes about the swimming but I need help physically at pool so I’m looking for a dependable person who could go with me. I do the gym once a week at least with mum, the pool would really help me I think!
I’ve made trial and error a way of life. My x husband was embarrassed of me slowly deterioration and my need for canes and braces and my limp. It’s very hard when the person who’s supposed to be with you thru thick and thin. I was 15 when engaged to him.
My new husband has known me same amount of time and is now my primary caregiver as well as my mum. I’m sooo grateful I have help when I need it now, but I do everything for myself I possibly can!
Lanadragon0 -
Junebillie,
That’s horrible about your wrist! I wish you healing. I had put on some weight as well and I agree about the fatigue. I will be grateful if I make a healthy 50. You have a complex case load. Lupus is another possibility for me as well. I’m waiting 3-5 YEARS to go to the complex disease unit . So I’m very disappointed with that but can’t change so oh well.
I agree 1 day at a time. I’m always motivated to keep trying and fight as hard as I possibly can to stay kind of in one piece. I’m very motivated I have a new husband 2 young step kids, I am illustrating a book my mum started fir me when I was 6, I play league darts sitting in a walker I with my family as my teammates. I have a service dog in training myself that’s rewarding.
I used to be a horse riding coach for therapeutic riding and foundational show riding. I kept my first horse I hadn’t ridden fur 3 years until last month ! It’s the only thing that’s come back mostly with no major work except the gym working up to it. I used to do my own cars full time 3x a day. I have him boarded out fully with a close horse friend I’m not able to do what I used to and I need a lot of help around him now. I have had him since he was 4 and I was 15, so more than half my life.
I really focus on living and doing things to keep me happy and grounded. I’ve learned to put myself first and manage the conditions,
Thanks for post
Lanadragon
0
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