Seeking support friends with chronic illnesses

jockety
jockety Posts: 4 Member
in Getting Started
Hi! I was hoping to find someone here who understands chronic health issues and their impact on exercise.

3 years ago I lost 20 kilos in 5 months by doing lots of exercise and cutting out most of the crappy foods, but since then I have been diagnosed with MS and gained back 18 of those kilos! I'm on immunosuppressant drugs and exercise has become very problematic. If I do too much I get sick and my body stops functioning properly. 2 days ago I did 30 minutes of very gentle exercise at the gym under professional supervision and felt great; yesterday I was unable to walk without pain and today I am developing an infection, which I tend to do when my body is overexhausted. As you can see, the standard 'push yourself harder' approach is out, but I am not naturally a 'slow and steady' sort of personality! It's hard for me to take it as slowly as I have to without getting frustrated and giving up as useless.

I am 54, Australian and separated, with three kids aged 15 to 22 who live with me. They're all in school/university. Can you relate?

Replies

  • amck604
    amck604 Posts: 9 Member
    yes I can, hi I'm from Vancouver BC and also 54 single no kids. I have had Lupus since I was probably 15 and it has given me seizures, bp problems and kidney failure. I am now on hemo dialysis and find it very hard to do anything. I'm allowed to swim now but I will not try it yet until i have someone with me as I'm afraid I won't be able to get out of the pool lol. I do have light weights I use while sitting.I always take a pain reliever before I attempt walking very far because my joints & back start to hurt. Maybe isometrics could help you. Don't over do it be kind to your body :-)
  • amck604
    amck604 Posts: 9 Member
    Check out isometrics on you tube, there are lots of videos on it.
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Hi, I'm 42 with Crohn's and gastroparesis which caused me to get an ileostomy and j tube. I also have chronic pain.
  • jockety
    jockety Posts: 4 Member
    Thanks, amck604, I will check that out. :)
  • jockety
    jockety Posts: 4 Member
    Hi singingflutelady! :)
  • tenazhsc
    tenazhsc Posts: 70 Member
    Sorry to hear about your condition. Your post reminded me that I have a chronic disease.
    I have an IG condition and it's in remission but I can relate with the fact that exercising doesn't have the same effect as when I was healthier. It's been a source of frustration because I'm pretty sure my body somehow doesn't want to give up the calories. And I tend to get fatigued, not tired, fatigued. As in, the house could be burning, and some days I have a hard time pushing myself to get up and get going.
    So yeah the rules of the game are different if you have a chronic disease or at least they should be. On top of that sick people have to do 'biographical work'. It's a sociology term that means you have to make and go to doctor's appts, you have to take your meds and you have to avoid inconveniencing people who rely on you, with your disease and any limitations that come with it. So don't measure yourself with the stick a healthier person measures herself because it doesn't apply.
    It's ok if it takes longer to reach your goals because you have more work to do, less time and have less energy. It may not sound too cheery but somethings setting expectations goes a long way.
  • jockety
    jockety Posts: 4 Member
    Yes, I suffer from fatigue, too. It's so frustrating, isn't it? Thanks for your post, tenazhsc.
  • dianepenelope
    dianepenelope Posts: 18 Member
    I'm here and I have psoriatic arthritis and grade osteo arthritis in one knee after botched acl surgery. People don't realise how debilitating psoriatic arthritis is. It causes pain in fingers hands, knees, hips and back and also intense fatigue. I focus on taking it one day at a time. My main thing is to stop comfort eating of sugary foods. I have cut out sugar now and grains, so thats also bread and pasta. Happy to support anyone else who is in health compromise.
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  • Zollsica
    Zollsica Posts: 4 Member
    Hey there, Jessica here. I have fibromyalgia, osteoarthritis, degenerative disc disease, and some other fun things. I am 28 years old and just starting my weight loss journey again. I had lost about 20lbs and then tore a disc in my back and fell off the wagon. Needing support to lose around 100lbs as my family doesn't think I can do it.
  • KerrieA87
    KerrieA87 Posts: 167 Member
    Hi there, I know how your feeling. I’m also immunosuppressed and have been for two years now. The drugs work for the most part in controlling my symptoms but the added side effects aren’t too good. Recently this year we’ve had to add in random losses of consciousness to my what feels like never ending list of illnesses and I’ve noticed any form of exercise leaves me completely exhausted and I need to nap straight after. I’ve managed to gradually build myself up to being able to jog a 5km in about 25 minutes, but it’s taken time and patience (I think that’s the worst part), I’m not very good at having to wait to achieve a goal but long term ill health forces you to do that. I set myself the goal that I was going to walk 5km and pushed myself to walk it a bit faster each time until I felt able to jog it, I looked at my goal from a different angle, I wanted to jog a 5km in 25mins or less but knew that my illness could mean not being able to work up to a new distance each time so I made speed my objective. I’m also not supposed to exercise unsupervised (I’m severely allergic to exercising, no joke, I go into anaphylaxis) so it’s a pain having to rely on someone else’s schedule too.
  • GuyanaGold21
    GuyanaGold21 Posts: 50 Member
    Hi! I can relate to your chronic health issues and their impact on exercise. I have been battling episodic migraines for 50+ years, and in 2007 was diagnosed with chronic migraine disease (15+ migraines per month). I ended up gaining about 50 pounds during that time due to inactivity. I had experimental surgery on my head in 2010, and now survive on meds, ice packs, and by avoiding known triggers when possible. Exercise and getting overheated are major triggers, as are gluten and weather changes. Stress also contributes. I also have lower back pain due to two major motor vehicle accidents (not at fault – LOL!!). I am so out of shape, every body part just seems to hurt and not heal. So once again, I am trying to lose weight so I can hopefully feel better. I generally do OK for a few weeks, then get hit with a bad migraine and struggle to get back to life. Over and over and over…

    I live in the U.S., have a DH, five wonderful grandchildren, and work as a biologist.
  • KerrieA87
    KerrieA87 Posts: 167 Member
    GuyanaGold21 wrote: »
    Hi! I can relate to your chronic health issues and their impact on exercise. I have been battling episodic migraines for 50+ years, and in 2007 was diagnosed with chronic migraine disease (15+ migraines per month).

    Chronic migraines is one of my conditions so I know how you feel with them, I’m at the stage of having Botox every 12 weeks to try gain control
  • invaderbree
    invaderbree Posts: 27 Member
    Can definitely relate. I have psoriatic arthritis and gastroparesis. I'm actually having wrist surgery tomorrow during to my arthritis destroying the joint. Definitely a pain to eat right and exercise regularly. Especially when you're on a round of prednisone 😬

    My gastroparesis makes it hard for me to maintain/gain weight (currently wanting to gain) but feel free to add me guys! I understand the struggle. I'm 23
  • invaderbree
    invaderbree Posts: 27 Member
    dianepenelope wrote: »
    I'm here and I have psoriatic arthritis and grade osteo arthritis in one knee after botched acl surgery. People don't realise how debilitating psoriatic arthritis is. It causes pain in fingers hands, knees, hips and back and also intense fatigue. I focus on taking it one day at a time. My main thing is to stop comfort eating of sugary foods. I have cut out sugar now and grains, so thats also bread and pasta. Happy to support anyone else who is in health compromise.

    I have PsA too. I can relate to others not taking it seriously. Was diagnosed at 10 and my family/some friends constantly compare it to injuries theyve had or make me feel like it cant be THAT bad. Just wanted to say you're not alone! I wish you luck on your journey
  • kellie5218
    kellie5218 Posts: 11 Member
    jockety wrote: »
    Hi! I was hoping to find someone here who understands chronic health issues and their impact on exercise.

    3 years ago I lost 20 kilos in 5 months by doing lots of exercise and cutting out most of the crappy foods, but since then I have been diagnosed with MS and gained back 18 of those kilos! I'm on immunosuppressant drugs and exercise has become very problematic. If I do too much I get sick and my body stops functioning properly. 2 days ago I did 30 minutes of very gentle exercise at the gym under professional supervision and felt great; yesterday I was unable to walk without pain and today I am developing an infection, which I tend to do when my body is overexhausted. As you can see, the standard 'push yourself harder' approach is out, but I am not naturally a 'slow and steady' sort of personality! It's hard for me to take it as slowly as I have to without getting frustrated and giving up as useless.

    I am 54, Australian and separated, with three kids aged 15 to 22 who live with me. They're all in school/university. Can you relate?

    I also have MS, along with some balance and stability issues. Exercising too much can make me feel like I'm relapsing.

    Let's be friends!
  • MrsStephHayes
    MrsStephHayes Posts: 6 Member
    I’m so excited to see this thread! I was actually looking for a chronic pain group for MyFitnessPal. I have chronic daily migraines and degenerative disc disease as well as two cervical fusions. My ability to exercise is very limited. A group of friends that can relate would be extremely helpful!

    I’m 37, live in the US, married with two kids (16 & 11) and recently became unable to work due to my condition. I truly believe some weight loss would not only help a bit of my daily pain, but also help with additional health issues such as depression and anxiety.

  • Beth_Gorman
    Beth_Gorman Posts: 35 Member
    Hi, my name is Beth. I have fibromyalgia, osteoarthritis, degenerative disc disease and migraines. I had a spinal lumbar fusion and haven't been the same since. I've had a long absence from myfitnesspal since my surgery and lost most of the people I communicated with. Now I'm starting over weighing more then my orginal weight. It's nice to be able to communicate with a group that understands you.
  • lenhill04
    lenhill04 Posts: 56 Member
    I also have MS. February will be 4 years since I was diagnosed. I don't exercise as much as I should, but I plan on trying more this year. Feel free to add me!
  • ylimennas
    ylimennas Posts: 1 Member
    I have MS too and I do not work out as much as I should. I am starting over with weight loss after never meeting my goal. It’s hard since I can’t run anymore. Support and motivation is always welcome.
  • lmazza1
    lmazza1 Posts: 21 Member
    I have MS as well. Diagnosed in 2012 and went from extremely active to not so much. Feel free to add me.
  • ConfidentRaven
    ConfidentRaven Posts: 1,428 Member
    I was diagnosed with MS about 5 years ago and know from experience how detrimental that push for just one more walk can be. I did that push a few weeks ago and had trouble for days. I know that I should have known better, but... 🤷🏻‍♀️

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