I have found it really demanding and pain levels have most definitely been up high a lot more than before. The stimulator still isn't taking those pain levels down easily and I basically have to see them through.
After seeing my consultant on 6th May, I am basically in a bit of limbo. He was understanding about the battery movement issue, so much better than I expected. He said he may be due to muscles building up behind the battery and pushing it out of place or may have happened anyway. Again, he didn't suggest stopping going to the gym, which I'm glad of as I still feel it helps to strengthen my muscles. I feel much less shoulder and lower back ache than I used to.
He also suggested that I may need to have surgery to place the battery somewhere else. He still agrees that the chest is not the right place for me, but suggested over ribs on the side (which I don't like the thought of, as surely it ca be knocked easily and it will protrude through the skin) or in the buttock area. I did say that I liked where it was, just want to stop it moving and asked about somehow securing it in place. Apparently it can only be secured on side, but he was outwardly talking about using a mesh, like in hernia ops to do this. If I have to have surgery, I hope the latter choice can be done!
For now though, he has asked me to use a waist belt to help keep the battery in place in the hope that it will scar back into place. This one is all I could find that seemed to be what I was after, and that wasn't too tight so I could move in it.
To be honest, I don't use it everyday, as I have clothes that keep it in place. I do wear it when teaching PE particularly, as tracksuit bottoms are lower than my work trousers and so push the battery from the bottom constantly.
I have found that wearing dresses actually doesn't make the issue worse. I thought that having no clothes to hold it in would make the issue worse but actually it seems that clothes are a big part of the problem. They seem to be the thing that pushes the battery and flips it. I have realised that I now seem to bend or squat over in a different way to try and avoid the battery moving though.
So it is happening less, but due to my changes. If I try to grab the battery, I can still hold the top away from my body, which I shouldn't be able to.
My consultant also agreed that going part time, even temporarily, may be the way to go. He said that the stimulator was never meant to get me back to how I used to me and that it is only a way to manage and reduce the pain, not eliminate it. He said that I am the best judge of what I can manage!!
I therefore, spoke to my work about this but that I don't want to do this until maybe after the summer. I feel it's not fair to my class to make changes in the last term of the school year. This was over 3 weeks ago and I still don't know the plan.
The first day into work this term I had a break down about the stress and overload of work. I broke down crying at home and couldn't stop. Before half term I had 3 moments at school where I had to stop myself crying due to the stress and pressure. I don't feel myself at the moment. I am not coping well and the pain levels are high more often than they been for about half a year! All I can do is wait and hope that I get the support I need from work.
It is so wrong that this condition can be so misunderstood and ignored!
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