Tuesday, 23 December 2014

Waving or drowning? The great hydrotherapy debate.......

The Great Hydrotherapy Debate is one which exists not only in my head (as most debates do) but also in the wider community of medical professionals and those who have M.E. 

There are many arguments for and against it, which you can easily find....in general patients will tell you not to touch it and medical professionals will book you right in. But this blog was never meant to be about assembling research, so I will concentrate on my own experience of Hydrotherapy. 

It was recommended to me by many medical professionals. First of all I tried 'dry land' physio. This didn't work for me because I just could not sustain being upright and doing the most basic of exercises. I would break out in a freezing cold sweat (and when I say sweat I mean the clothes-soaking-wet-in minutes type sweating), shivering, passing out and apologising all the while for wasting the physio's time. The physio (who was lovely) referred me for hydrotherapy as she felt it could be a more gentle introduction to exercise for me.

It seemed like a good idea. I love having a bath- it makes me feel very relaxed and really helps with pain and spasms, if only in the short term. So in a way I really fancied the opportunity to try it out. My family and friends were happy that I was going and were all hoping for the best. I tried to explain about Graded Exercise Therapy (GET) and how it had been shown to be damaging for many patients, how it can cause relapse and how I was worried that going to hydro might make me worse. But there was a general feeling of 'if the doctor recommended it then it must be ok'. 

So to understand how hard hydro is for someone with severe M.E you have to remember what my life is like. I am almost entirely housebound and spend many many days in bed. Getting dressed into slouchy house clothes takes up loads of energy for me...and I don't always manage it. I can't get up and down my stairs at home easily etc.... Now for hydro, I had to get up and get dressed, eat breakfast, be driven across town, get out of the car, get to the building where the pool is, sit upright in the waiting room, get to the pool, get changed, and walk up and down steps to get into the pool. Already I am well outwith my energy envelope and I have only just made it to the pool. I have not even started the session yet. 

None of this exertion is taken into account by the physios who simply do not seem to understand M.E. I was so exhausted I couldn't speak on the way home or anything, I was just slumped on the seat and went straight to bed, where I remained for much of the following week. I phoned to say I was too unwell to go the following week, they asked me was I 'just tired'. I explained all the neuro symptoms I had been suffering from- horrendous headache, leg pain, disrupted digestion and bladder function, tremor, slurred speech etc. 

At the next session the physio was better, we did much less and talked about building up slowly etc. However I had the same effects afterwards, despite doing much less, and had to cancel the following week's appointment again. 

I managed fortnightly for 5 sessions but I was unable to do any of the other things I had been managing at home, like making a sandwich for lunch. I couldn't even sit and watch TV with my husband and was in bed for much of the time. 

In the end I called the physio and we decided I should take a break until the New Year and see what happens with my symptoms. Well after a very rocky few weeks I have started to get back to my usual self (still poorly but on a more even keel, able to get out of bed most days and potter around the house). To me it is clear that the hydrotherapy was making my M.E worse. 

So why is there a debate? Isn't it obvious that the hydrotherapy is causing relapse and should be avoided? Yes. But. My legs feel stronger. I have not had to rely on my crutches so much and people have noticed that my walking is a bit better. Is this a result of the hydrotherapy... possibly. 

And the rehab doctor I'm seeing is pushing for it. When I told him I couldn't make all the sessions he told me I 'just had to try because it will help'.He held his fist up with a determined expression on his face when he told me I had to try. Even thinking about it makes me angry as I do nothing BUT try, every minute of every day. 

And it feels so good to be actively DOING SOMETHING to help fight this illness.... even if it is the wrong thing to be doing. Which probably sounds mad. It's so frustrating to be left to manage this illness mostly on my own.

But this is one thing I have tried that I may have to refuse to try again, even if that means losing the support of the rehab team and being seen as not trying hard enough to get better.

It upsets me that I have to rely on my own research and judgement to decide on my treatment, to fight for what works and to fight not to be pushed onto things which harm. We are crying out for more understanding and better treatment for this disease, rather than judgement and blame. 

We've still got a long way to go.