Nice early start again this morning, I woke up in pain. My bum muscles are so so so sore! It’s really highlighted how little I normally use my glutes for walking and standing etc. Just half an half and hour working on those muscles and they hurt more than ever before! Guess that means I’m working hard right?
After sulking about my bum ache for a while I had some cornflakes and got myself ready and up to the outpatients dept for Stretch Class.
After the gentle stretching class this morning I borrowed a yoga mat and set about some more intensive stretching to try and loosen up. It seems to have helped but it was really hard compared to normal, is this how regular non-hypermobile people feel when stretching?
I also spoke to my OT who’s suggested coming to visit me on the ward as supposed to me going to outpatients. We’re going to look at my posture when using a laptop in bed.
After that a headed back to the ward with the porter and did my shoulder physio, I’m sure I’m making progress. The exercises are still hard but I can now activate the right muscles much quicker and I can keep the right muscles working for the whole set most times now. The hour before lunch was spent flaking out in bed and preparing for a very busy afternoon!
After a very enjoyable lunch of roast chicken and thyme, chips and runner beans. I sorted out my swim wear and got my laptop out ready for OT.
My lovely OT arrived and watched me set up my pillows and my laptop. I got myself comfortable. Well talked about my computer habits like how long I go without a break and how often I move around and if I ever actually sit up right. She recommend I try an app called Work Rave to help me pace my activities on the computer and make sure I don’t get distracted and forget to take rest breaks.
We set a few targets for the weekend to make sure I’m continuing my rehab.
My weekend goals are…
1. to go shopping and ask for help from a stranger, rather than over reaching out of stubbornness!
2. To try and do 20% of my computer work sitting upright with good postural support.
3. To download and customise Work Rave.
We finished the session a few minutes early so I could get ready for swimming. After gathering all my positions we headed to the Aspire pool for water based exercise.
I got changed and headed off into the pool. I set myself a target of 30 lengths but knew half wat into length 2 that wasn’t going to happen. It was just too hot! It was like a hydro pool not a regular swimming pool! Everyone else seemed to think it was lovely. I managed 10 lengths then hopped out of the pool to lay on the tile floor and cool down. I waited until I felt less PoTSy and my heart rate had dropped down again before getting back into the pool for another 4 lengths. I managed 2 and had to lay down again before finishing the last 2.
I was totally exhausted and feeling really PoTSy so I sat on the edge of the pool for about 10 mins chatting with the physios and a friend of mine in the ward.
I made it as far as the lockers before sinking quickly down to the floor. I sat there for a while and then made it the rest of the way to a cubicle.
One of the physios stayed with me outside the door while I got dressed and struggled into my PCM Cool Vest. After another rest I made it as far as the foyer and got picked up by the porter and taken off to physio.
I was still tachycardic and floppy by the time I got to physio, I was also nursing a killer headache.
My physio was great we headed to a cubicle and he sat me down and listened to the Swimming tale. I ended up crying. Partly out of frustration at my heat intolerance. It’s something out of my control, something that won’t improve no matter how many hours of physio I do. I also sulked about how little I’d achieved and how I hate being useless and I hate needing help. It sucks being dependent on other people especially when you know they are busy, like having to be supervised by the physio lady while the rest of the group looked after themselves. Or getting my friends and family to do things for me when I know they are busy or not feeling great. I feel guilty. My physio made me talk through it rationally.
Why should I feel guilty, they could refuse to help so it’s their choice, I’m not demanding. And it’s not my fault I need help. I deal pretty well. The heat intolerance sucks and I’m probably not going to be able to change that, I can however change a lot of other things. I can get fitter, I can lose weight and I can take control of my health.
After some sobbing, sniffling and rationalising. We made my goals for the weekend.
1. To do my exercises twice a day.
2. To try to recognise my negative thought patterns and take a step back from negative situations, use my breathing exercises to avoid anxiety.
3. To problem solve swimming for week. (Can you swim in a PCM Cool Vest?)
4. To work on my communication with my family, to clearly explain what I need and why rather than snapping at people when they can’t read my mind.
I also planned to get video of myself swimming on Saturday and my physio will have a look at the video next week so we can assess how well I use my muscles when swimming.
After I got back to the ward I flaked out in bed feeling fatigued, PoTSy and hurty. After a generous helping of salt and a lay down I got up again and chatted with Addz (my boyfriend) via facebook while doing physio.
The rest of the evening was spent chilling and chatting.
Tomorrow marks the end of week one. So I’ll probably post after I get home tomorrow
Ciao for now folks.