Monday 19 August 2013

How to use walking in water to recover from ME

So finally, here is how to use water to help recover. My aunt had severe ME, and I think had to be carried into the water at the beginning, but she has put water down as the biggest contributor to her amazing recovery in only 2 years!!! The shortest I have ever heard of. I have worked via e-mail with her physio in South Africa and this is how she advised me:

I started by being in the learner pool (which is so much warmer) 3 times a week for 5 minutes only. It is important to have a day between paddles and not to swim. I simply walk I in the water up to shoulder height using my arms to part the water ahead of me. Like I said before when I first started it took a lot out of me, I had to be driven there, I felt very shivery when I got out and getting dressed felt like a huge mountain to climb. I think my aunt was so ill she was only in the water for 2 mins to begin with. So I did 5 mins Mon, Weds and Fri however ill I felt and after about four weeks I felt stable at that amount of time so then I increased it by only 2 minutes more. You do this every time, keep at the new time, keep being steady with it, allow yourself the day off to recover, keep to your fixed schedule the rest of the time and when you feel you are stabilising at that amount of time up it by 2 minutes. It is important not to push it, not to try and ramp it up too quickly, and if something goes wrong, you get an infection or over do it like me, then rein it back a bit by 2 or 4 mins depending on how ill you are. I have had to drop back down three times now - which is always very disappointing - but each time I have found it takes less time to get back to where I was.

When I got to 11 mins for the first time I suddenly realised I was feeling very much more robust. Unfortunately I got an infection and was very sad to drop back to 7 mins after having a couple of weeks off, but I got back to 11 mins in about a month, rather than the two it had taken me to get there. The exciting bit is finally getting to 15minutes as then you can start to swim a little. You swim for 2 mins, then walk for 3, swim for 2, walk for 3, swim for 2 and walk for 3.

It all sounds like graded exercise, but I have to say it is more than that. As I have said I wear a heart monitor in the water and as soon as I get in the water my heart rate starts to drop. Getting in the water feels really healing there is something lovely about it even when I was struggling either side of the getting in the pool. But recently where I pushed myself up the silly mountain and had just reached 15 mins and had to drop back to 13 mins, getting in the water just calms everything down, all the weird body symptoms, the autonomic nervous system stuff just seems to be soothed by being in the water. And this time it has only taken me 2 weeks to feel stable enough to get back to 15 mins and 2 min swims. When I think back to last December and how much better I am, how much more robust, I feel really hopeful that given another year or so I will get back on my feet properly. It's important to be realistic and take it steady. My aunt thinks the most important thing is to make steady progress and avoid crashes as they damage the body further. It is of course all about mental toughness - if only those idiots who think it's all in our heads would realise how tough you have to be mentally to live with this awful condition!

Where I lived before was too far from a pool for me to use even though my aunt told me it was the best thing I could do and I couldn't quite believe her, but here I am lucky to be a 10 min drive away and have a leisure centre where I have paid £150 for a years unlimited swimming, so I'm only paying £1 a swim in essence. It is the best bit of money I have chucked at this illness and believe me from mitochondria cell function tests to injecting myself with B12 and magnesium its the best £150 I have spent.

I urge anyone with ME, however ill, to try it. To beg someone to take you and stick to a tight schedule and try it. I know my aunt isn't the only person who has recovered this way, although she is the fastest the physio has known. If you want any advice let me know, and of course if you sign up to e-mail reminders you will automatically keep up with how my recovery is going!

Wednesday 7 August 2013

So Cross with myself!!

As anyone who cares will have noticed I have not managed to post about how to do water therapy yet. Why? Because I have shot myself in the foot so to speak and have been too ill to write much until today.

Last Friday I was upset about something and it all just served to emphasise how powerless and trapped I feel by my illness. I got myself in such a state about it and how I can't do anything to change this, I can't just apply my mind and my will power and BOOM it's all gone that I wanted to do something that made me feel less trapped and powerless. So what did this silly cow do? Well, we live two thirds of the way up a small Welsh mountain, so I in my hysteria dragged myself up the last third of it! I had to stop every hundred yards or so to sit down and rest and cry and the dog kept giving me concerned looks, but with no one else to talk any sense into me I just kept going. I got to the top eventually and I lay on the ground and looked at the clouds and the sky and began to feel a bit better. After a while I even managed to stand up and walk slowly back down feeling much better than I had on my ascent. I even managed to kid myself it was okay, there I could do it. Ha! Ha! Ha!

Well if I haven't learnt before I have now. Just feel like I've been unplugged again, my heart's been going random, sugar crashing again and generally feeling really rotten. The problem is even I had stopped appreciating how much progress I'd made. I felt like because I was doing so well when up and about and not feeling rotten that others who don't know me so well would think, 'what's her problem, see she walks, she talks'. I let this get to me, I let my own imaginings get to me, I forgot to remember that the only reason I was so good at walking and talking was because I had worked so hard at sticking to my schedule and building up my water therapy time. Well I will remember next time, however distressed and angry I am at living in this glass cage, I will appreciate that the walls had extended a little further, how easily they can fall back in on me.

This post is not about me moaning about how I feel, I want it to serve a purpose for others. I felt sharing this foolishness on my part may help others not make the same mistake.

Lets see how long it takes to gain back my ground, I feel I have gone back several months, it will be interesting to see if it takes less time than that to stabilise again and get back to where I was a week ago. Wish me luck.

I will blog about water next, soon. If you want to know when I've blogged next please do sign up for e-mail reminders. That's all your e-mail will be used for, nothing else.