I have a hypermobility syndrome (probably EDS Hypermobility type). The Hypermobility Syndromes Association's topic for the month is Exercise. So I thought I'd write this blog I've been thinking about for ages.
I've seen loads of physiotherapists, and been told in many different ways that I need to exercise. Which is true, but also not helpful. It took me a long time to discover these little nuggets which made 'exercise' both possible and helpful for me - I share them in case they help you too:
1. Housework can count as exercise. But only if it's done with poise and control. Not if it's in 'desperate flop', or 'zombie on adrenaline' modes..
2. Exercise doesn't have to include running and sports and impossible things. Actually exercise can be almost any moving with control and poise. Things like sitting up with the spine in nice alignment for a few minutes. Or brushing my teeth while standing with my weight properly on both feet and my butt muscles engaged. And I love sitting on my gym ball! Little and often and with a posture focus was key for me.
3. Focusing on doing a physio exercise perfectly - and stopping when I can't control it properly is far more effective for me than pushing to try and finish the reps and then being unable to function.
4. 'Pain' has different meanings for different people. For physio's it usually includes 'that achey feeling when you use your muscles'. For me it meant 'uh oh, this hurts in ways that are not good and can last for days/indicate injury' - muscle ache was classed as 'whoop! I must be doing it right!'. I now know to be more specific.
5. 'Push yourself' doesn't mean 'keep going until you are so exhausted you cannot function for a month, or are in screaming agony for days, or collapse.' Even though it sounds like exactly that. It means 'keep going until you are at the limit of your comfortable - and start building slowly from there.' (You would not believe how long it took me to figure this one out!)
6. 'Do these exercises' is the start of a process - not a statement that inability to complete them means total failure. When the physiotherapist says 'Do these exercises' it sounds like they mean 'do them or I will brand you as not trying hard enough, and not wanting to improve, and spend the next lesson lecturing you so you feel really disheartened and not-listened-to.' Actually they often really mean 'try these exercises as a starting point and as we see how you react we can adjust them to find out what works for you.'
In trying to work out how to get past a physio's fear of me giving up, I came up with this form:
Basically if I can't do what I've been asked, or it leaves me unable to function for days, or worsens the pain for days, then I write the exercise, how many reps/how long I did it for, and what the effect was. Then (once I've recovered) I try again - but with fewer reps/shorter time/variation of the exercise. And record what I did - and the effect. And I keep tweaking the time til I find a level that means I recover within an hour/have acceptable side effects. Then at my next appointment, my 'I can't' turns into 'I've put a lot of time and effort in, and look what I've discovered I can do!'
These 6 realisations have been a huge help for me: I have learned to use my body in better ways, and built strength and stamina, and can manage my pain a lot better than previously (no, it's no cure, but it really has helped). Hopefully reading this will help someone else too. Whether it is helping someone with a hypermobility syndrome (or other condition causing long term pain and needing exercise) get the best out of their physio - or helping a physio to understand their patient.
The leaflets and forms mentioned in the images above include a range of other common misunderstandings which I wish I'd known about sooner. They are all available from Stickman Communicaitons - along with the 'problematic exercise form' - which is available both as a printed copy and as a download.