Living Life, Within the Limits of Chronic Illness

How Physiotherapy is Helping Me

Before I even begin writing this post properly I feel I need to explain that I do not believe Graded Exercise Therapy (G.E.T.) will cure M.E. In fact I know it doesn’t.

You see, I was prescribed G.E.T. when I was first diagnosed with M.E., and I followed the advice I was given while doing it up until the physiotherapist who was doing it with me, discharged me when she saw it was actually making me worse rather than better. And for that I am immensely grateful – the harm that could have been done had I kept following the advice is unimaginable, however that also left me in a worse state of health than I had been, with no help or guidance on what I should be doing for the following 13 years.

But, 13 years on, having seen more doctors (and gained more diagnoses) I am back doing a form of graded exercise. Only this time it is being done in order to help my hypermobile joints and most importantly done at my pace; that’s to say the aim is to gradually increase the exercises I do, BUT if I have a bad day I can reduce the amount I do, or even not do it at all, all depending on the levels of fatigue and pain I have that day. The idea is to build up my ability to “exercise” while still being able to manage my every day tasks and activities.

I think the key thing here is to explain exactly what I mean by “exercise”; for many that term conjures up walks, gyms, running, swimming, all the kinds of things I am unable to do. And if I attempted would leave me in a heap on the floor. No, for me exercise each day is a series of gentle stretches twice a day, doing between 2 and 5 reps of each. Working towards 5 reps of each exercise and possibly adding in additional exercises once certain areas are stronger. The majority of these are done laying down, in part because of the symptoms I get when standing up and the risks they pose.

Like I say we are gradually increasing them. The aim is to increase one “exercise” by one rep, once a day every 2 weeks. But if I find I can’t manage that, it’s fine. We come up with an alternative plan; either increasing a different exercise that time because it’s obviously too soon for the muscles used in the one I’m trying to increase, or leave it longer between the increases. It’s all about finding what works for me, and what I am able to do without impacting greatly on my daily routine.

The general principle of gradually increasing the amount of exercise or activity done is a good one, and it is what many of us do without even realising it; we build up in little steps to doing things; like watching TV for 30 minutes instead of 25, or sitting up for 32 minutes instead of 30. Or reading a sentence in a book, then building up to reading a paragraph.

Whatever it is, it’s natural for us to do it; the majority of people I know with M.E. all have something they are working towards; little by little, something they’re building up to doing. The key to it being beneficial rather than harmful is just the way in which it is done. Listening to the body, only pushing a tiny bit at a time, and resting afterwards, assessing the impact doing something has over the hours and even days that follow. And if the impact is bad, you go back a step; find the level which is manageable and can be maintained before perhaps trying a smaller increase, or a different increase to work towards which works for you.

With the right implementation, I think graded exercise can be beneficial. It’s not going to cure M.E. or hypermobility, or many other chronic illnesses for that matter, but by building up the muscles, no matter how slowly, it will gradually take less energy to use the muscles, and in turn that leaves a little more energy in the pot for something else. It doesn’t actually increase energy levels; they remain as low as before, it just reduces the amount of energy that basic tasks take each day.

On bad days it might not seem that way at all, and even on average days it can be difficult to notice, at least not for quite some time. But in my experience, after 6 months, when I look back at what I had been managing, and what I am now managing there is a slight improvement; going up the stairs isn’t quite as physically difficult mobility wise, and it doesn’t take quite as much out of me as it used to. That’s not to say it is easy, or that there aren’t days when it is almost as difficult as it used to be, but for the most part, on average, it is a bit easier than it was.

And that gives me hope. Hope that if I continue building up my exercise, or activity levels, however slowly, things will continue to get that little bit easier.

Now I know that what I’m doing won’t work for everyone, because everyone is different. And it is important to realise that: what works for one person, may not work for another. But it is equally important not to tear people down just because they’ve tried something and found it’s worked for them, when it hasn’t worked for you. I can’t tell you how many times I’ve seen people who have improved, be that a little or greatly, being attacked on social media because if they’ve improved at all they can’t have had whatever diagnosis they’ve been given by a doctor.

The problem is there is such a range of ability within the diagnosis of M.E., hypermobility and other chronic illnesses, that it is impossible to compare one person to another and come to conclusions about what will work for you. The one thing we all have in common is that a doctor has given us the diagnosis based upon our symptoms.

The chances are we have all tried to find ways in which to live the best life possible with our symptoms, and find ways in which to improve our health; whether they have worked or not, we generally keep trying. Perhaps not consciously (by going out looking for the “magic cure” and spending money on things which promise to help), but subconsciously we are always trying to make little improvements, acknowledging the positives in each day, and celebrating those “firsts” since becoming ill (such as the first time standing without feeling dizzy for x-amount of weeks or whatever).

Comparing yourself to others with the same diagnosis doesn’t do any good. And saying bad things about someone who has managed to improve their life, through whatever means that worked for them, doesn’t actually help. It might make you feel better for a few minutes or so, but the chances are you’ve hurt them for much longer than that. You might well find your means to improve sooner than you think.

But in the meantime, be kind.

I am hoping that my current journey with graded exercise will continue to be a positive one. Both me and my parents went into this incredibly warily after what happened the first time, we were ready to pull the plug the moment it seemed to be too much for me.

Right now I am feeling some benefits from it; stretching each day is helping ease some pain, I am gaining a bit of mobility back (not great amounts, but little bits which help with getting around the house, and that makes a big difference when you’re housebound) and because my muscles aren’t taking quite as much energy to do things I am managing to do a little more activity each day; be that simply concentrating on a book for a bit longer, again it’s nothing huge but when you’re life is so restricted by illness any little improvement helps make life a bit better. And that is what counts.

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  1. Sophie

    As a bendy fellow fogger, I can confirm that the bendy diagnosis makes a big difference to the way many specialities treat you. With ‘just’ an ME diagnosis, it seemed the assumption was my problems with physical treatments were psychological. Since the EDS-H diagnosis, my symptoms have been taken more seriously, and more allowances for the effects of the ME are made. I agree that a good physiotherapist makes a difference too, but even these I’ve found have a better attitude to me since I was diagnosed with the EDS. Glad to hear you’re pacing your activity increases, and adapting to feedback from your body. Unfortunately, I’ve found that, although I can improve over the spring to autumn months, once winter kicks in I slip backwards, as I pick up bug after bug, and I’m back at square one in the Spring. Hope you don’t experience the same, and continue to be able to do more.

    • Clare

      That’s really interesting that you have also found a bendy diagnosis makes a big difference in the way so many specialities treat you! I’m kinda relieved to hear it’s not just me who has found that. Over the past 15 years (spent with “just” an ME diagnosis) I have found the same – I improve over the spring-autumn months but slip back once winter kicks in catching bug after bug after bug! This winter, I’m not quite sure why/how, but I managed to avoid getting quite so many bugs so didn’t slip back quite as far. Thank you, I hope you can find a way to avoid catching quite so many bugs like I have (I wish I could advise you how, but I’ve done nothing different to what I have other winters; I’m hoping I didn’t just get lucky with this last winter!) and that you are staying safe in the current situation x

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