Exercise

Exercise with a Chronic Illness or Variable Disability.

I’ve thought about an exercise post for a while. I’ve had a couple of half-formed ideas about how to write this post but a recent article shared by the BBC has spurred me on. The article, Difficulties of Getting fit if you’re disabled by Kate Ansell, was brilliantly written and covered a lot of the topics I think are really important. The article focussed on Cerebral Palsy, something I know a fair bit about thanks to past work, and personal experiences with friends and family. I’m going to try to generalise to most chronic illnesses and variable conditions but with my own medical issues I’m bound to be a little biased.

I’m going to start of by saying something I suspect will be a tad controversial. There is almost no excuse for not doing exercise.

Now let me explain.

The literal definition of exercise is ‘An activity requiring physical or mental exertion‘, …that’s it… There is nothing in the dictionary stating that this ‘exercise‘ must be done in a gym, surrounded by people who makes you feel inferior by running faster or lifting heavier than you can.

Exercise isn’t a set task, it’s an individual experience. What suits one person isn’t right for another.

The primary goal of ‘exercise’ in is to improve fitness, so what is fitness? being healthy? eating right? being physically able to do all the things you need to? being skinny? having lots of muscles?

By some definitions I will never be ‘fit’ since there will always be things my body cannot do. I will never be able to run a marathon, If I get too hot I’ll still pass out. Going to a gym will not fix that.

I prefer to think of fitness as Being the best I can be given the limitations I face.

I think we need to re-examine the way we think of exercise, society has pushed ‘exercise’ to a point where it’s seemingly unattainable for many people, I’d like to change that.

If you’ve struggled with fatigue or pain for years and you’ve deconditioned a lot then marching yourself off to the gym for an hour is only going to end badly. Think back to the definition of ‘exercise’ again and adjust your perception of ‘exertion’.

If you’ve been on bed rest then try sitting in a chair for a while, if you’ve been slumping then try sitting up straight using your core muscles for a few minutes. What is easy for some people might be totally exhausting for you.

Just to give you a quick idea of this I’ll give you an example. When I first developed Postural Tachycardia I wasn’t getting any medical advice and my heart rate was totally un-controlled. I was wearing a heart rate monitor for most of my waking hours to try an learn my limits and prevent mega-flops. My partner arrived home from a 10 mile run. I stood up to give him and hug and we talked. My standing heart rate was the same as his after he’d run 10 miles! So we’d done drastically different activities but we were exerting ourselves at a similar level.

Most of you know that I love sport, exercise is my favourite method of managing my health. I’m dedicated to my physio and I will always find a way to make a sport suitable for me. I’ve adapted yoga, done Parkour on crutches and been rock climbing while using a wheelchair.

One off physical exertion is relatively simple, the more difficult part of getting fit is managing to exercise regularly, for many people (myself included) there are serious consequences to ‘over-doing-it’. With my Ehlers Danlos & Postural Tachycardia any exercise presents a wide range of challenges. I’m often asked how I manage to exercise safely but the simple answer is …I don’t… I manage to exercise a fair bit but it’s not usually safe in the traditional sense.

The definition of safe is ‘not likely to cause or lead to harm or injury; not involving danger or risk‘ by that definition nothing I ever do is really safe.  With EDS & PoTS there are very few truly safe activities. Perhaps a better question is, how do I minimise the risks to myself while exercising?  

To start with I’ll explain a bit about the risks I face, if you’re an EDSer and PoTSy you’ll probably face a lot of similar challenges…

My main ‘challenges’ include… Joint subluxations and dislocations. Sprains and strains. Trips and falls. Tachycardia. Breathlessness. Pain. Fatigue. Dizziness and fainting. Overheating which can lead to confusion, loss of speech, inability to concentrate, memory loss and ending up as a crumpled heap on the floor. Walking/wheeling/jogging into things. Allergic reactions (e.g. latex swimming hats or resistance bands)…There are probably a few more but you get the picture.

Through trial and error (a lot of error) I’ve managed to find my baselines, my limits as to what I can do in one session before I really over-do-it.

I pace myself, if pacing is a new concept to you then please take a look at my Pacing article or consider seeing me for a Pacing Masterclass. Part of my pacing is to largely avoid structured exercise classes. In groups there’s often pressure to keep up with others rather than stick to your own limits and with classes the choice of exercises is taken out of your hands.

Instead I choose to exercise regularly throughout the day, I break my exercises up into manageable sections. Say I have 30 minutes worth of physiotherapy to get done over the course of a day.I won’t just set aside 30 minutes and push through.

When I brush my teeth in the morning I do 20 calf raises, while lunch is cooking I might do some gentle stretches, during advert breaks on TV I sit on a gym ball, every time I sit on the toilet I try to sit unsupported and with perfect posture, each night before bed I lay on the floor and do a few stretches and core exercises. You get the idea.

Most of my physio exercises have been integrated into my day so that I can pace myself and also so that I don’t feel like I’m doing all that much physio. It’s just lots of little tasks not one big ominous task. It doesn’t really feel like I’m exercising at all but when I look at what I’ve achieved I’m always pleasantly surprised. If you think about every single time you exert yourself during the course of a day I think you’ll be surprised at how much you already do.

To achieve more all you need to do is gradually increase each activity just a bit. Nothing drastic, you don’t need to go anywhere near the gym until you’re good and ready.  When you are ready just remember you’re there for yourself and nobody else. One persons fitness cannot be compared to another, we are all individuals. Be the best you can be don’t strive to be someone else.

I do hope this has been useful and as always feel free to ask questions or share your experiences.

Happy exercising!

JBOT

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8 thoughts on “Exercise with a Chronic Illness or Variable Disability.

  1. Great article. Thanks for sharing. I think you’re right about finding a baseline but when your health is complicated by so many fluctuating conditions it can be very challenging. I’ve been ill for over 20 years but only diagnosed with EDS for 2 years. I used to dance, walk and cycle everywhere, now I can’t walk more than a few yards with crutches. I’ve been seen by several physios but none have been able to help me because I have irritable muscles which don’t relax properly. My muscles also go into spasm at the drop of a hat, especially in my neck and my back. I have trigger points which won’t release and just moving around the house leaves me injured and in pain. Even isometric exercises cause prolonged muscle contractions that take several minutes to relax. I have struggled to find a baseline because doing any activity reduces what I’m capable of doing. It’s incredibly frustrating.

    I attemped Stanmore’s rehab programme but the mandatory classes were too intensive for me, I had a massive flare up of symptoms and had to leave half way through. I can’t do swimming or hydrotherapy because being in the water triggers severe POTS symptoms for a few days and it takes me a week to recover, even if I did nothing more strenuous than floating for a few minutes. My GP encouraged me to walk more but that only causes more pain, exhaustion and injury. A recent MRI showed I have a subluxed patella, patella alta, a dysplatic flattened trochlear notch causing patellar instability. The orthopaedic surgeon said surgery wouldn’t help so now I’m onthe waiting list to see orthotics for a brace. The waiting lists are long though and I’ll be lucky to get anything fitted by Christmas.

    I know I need to improve my health and fitness but currently I have no help or advice on how to do it. NHS physios discharge me when their standard advice doesn’t work. I’ve tried things like a one to one pilates class but after the third lesson I suffered a spasm in my neck that caused severe pain for three months. I would love to find something that I can do. I’m not afraid of pain or moving, I know staring a new exercise is going to cause more fatigue and pain but it would be helpful if I could find something that didn’t leave me so ill that I can no longer care for myself.

    1. Thanks for your comments! Sorry your having such a rough time of things and I hope orthotics get back to you asap. I find splinting helps me loads especially in the early days of new activities.
      I’ve started incorporating some realxation and breathing exercises into exercise to prevent over tight muscles. It also helps with any anxiety about the exercise (or expectation of pain). After stressful exercise (hard work) I always do relaxation and some breathing exercises in the bath after exercise. There are plenty of free relaxation tutorials online I especially like ‘The breathing square’ 😀 Relaxation followed by one or two short pilates exercises might be worth a shot? relax your muscles then try to activate them correctly?
      The difficult thing with all chronic conditions is that there are no certain answers, it’s a lifetime of trial and error. Maybe to start with just try to lead your daily life with slightly better posture and slightly longer stretches before a rest break. Please do let me know how you get on with everything and I hope you do find a way to safely exercises 😀 X

      1. Thanks for replying. Unfortunately my muscles don’t like to relax. I’ve done guided relaxation with my ot and it left me stiff, sore and feeling awful. I can relax my mind but my body doesnt follow. I suffered random muscle spasms which were quite painful and distracting, despite me being comfortable in my recliner chair. I’d visualise myself walking along the beach and suddenly my elbow would painfully tighten or I’d get a shooting pain in my knee. I’ve done the relation technique where you tense and relax each muscle group but that is painful too because it hurts to tense my muscles and my muscles don’t fully relax when I release them.

        Stanmore advised me not to do breathing techniques because I have POTS. I already knew that from past experience as they always leave me feeling lightheaded and nauseous.

        Finding a relaxation technique is as challening as finding an exercise that works for me. Hot baths help a little but thry also make my POTS much worse so it’s swings and roundabouts. Ideally I need to figure out why my muscles fail to relax. I’ve had neurological testing and found I have myotonia as a symptom but not the neurological condition so I can’t have treatment for it. I have no idea what is causing the symptom and unfortunately no-one is currently investigating. It’s easier to discharge me or accuse me of non compliance than to find out why I can’t relax or exercise.

        1. Urgh what a tough situation. I’m sorry I can’t be of much use, it sounds like you still have un-answered symptoms that need investigating. I do hope you find some answers. Can you be referred on again? neuro maybe? Or keep asking for physio referrals, they will see the symptoms or find a way around it eventually! Xx

  2. Well written. I think one of the key things that you touch on is attitude. a positive attitude to start with helps.
    thanks for writing this

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