Another post for #edsawareness month.

I started seeing my rehab lady back in February and I only got to see her due to a chain of events, but once again me being quite pushy got the results that I needed. And once again I thank all the privildge that I have (articulate, confident, not being afraid to challenge ‘authority’ and educated) and wonder what happens to those who don’t have it.

UCLH Hypermobility department referred me for Hydrotherapy which I was really pleased about and had really high hopes for – REALLY high hopes. I was expecting for hydro to be a magical cure for me. I was bitterly disappointed. It was mainly aimed at those who don’t do any exercise at all and at this stage I was still swimming, albeit for about 5 minutes of the 20 minutes I was in the pool, and doing my stretching/yoga/pilates routine every morning. The lady was having to invent exercises to challenge my core stability as it was so good.

When that finished I had to go back to the local physio to report on the hydro I told them that I was highly disappointed by it and I felt that I had eneded up in a wheelchair in an incredibly short period of time and no-one was helping me to rectify that and they should be. He told me about the rehab lady and I was over the moon.

When I met with her it turns out she has just joined the triatholon club that I used to belong to, so I knew that she would ‘get’ me and my attitude towards things. She has really helped me over a period of a few months, seeing her every 3 weeks or so. However I have seriously put the effort in. I keep a diary with all the exercise I do in and took that along to sessions, along with questions and thoughts on the exercises. I have vastly increased that amount that I can walk, really building on the work that I did with the COPE pain management programme.

I am swimming more and even doing a bit of cycling, although that isn’t going quite as well.

When I saw her this week she said that I knew what I was doing and I am determined to make it happen. She also told me to give myself a break, that I am doing so well and I have to remember that. I am doing more exercise than the average person and tracking with as much detail as I did would help. She said that I needed to iron out the peaks and troughs (which are no where near as bad as they were) but also remember that I will never get it perfect, not least because I do still work and have to go to meetings, events etc. She told me that I needed to forget the training I used to do and focus on the here and now.

She’s right – at Christmas I spent most days on the sofa and I walked the dog by driving him to the park, walking to the nearest bench and sitting there while he ran around me. Now I don’t need to spend entire days on the sofa, although if I am at home I will generally have a lie down in the middle of the day. But on a good day I can walk Buster for an hour, I actually got to see the bluebells this year, which at Christmas I was convinced I wouldn’t do.

I am really grateful to my rehab lady for her encouragement, support and expertise, but actually on this occasion my sheer bloodymindedness, stubbonness and allround, well JEN-ness is paying off. I have learnt an awful lot more patience than I used to have, but it is still quite a weak point for me.

I am also really grateful that I am able to spend as much time as I do on exercises and this is only because I am self employed and dramatically cut down on the work that I do. This is only possible due to the support of my amazing husband.

I hope to continue to get better and stronger, at the moment I still seem unable to stand for more than a few minutes, walking on hard ground is difficult and I use my wheelchair if I am going to be out for more than 20 mins. But I was using my wheelchair to get into the swimming pool and now I walk in. I couldn’t pop to the Co-op for a few bits as it was too exhasuting and and I can do that now.

Of course, I could get worse, but I can also get better, or stay the same. I don’t know and no-one can tell me either. So I just continue to do my best, without over pushing myself. A tricky balance to get!

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