Rehab update and feeling worthless

I haven't updated my rehab journey as i have been way to exhausted. After dragging myself through a few more days , the team decided to cut out some sessions in my timetable as it was getting to much for me.

Last week was tough as i had a problem with my feeding tube and had to cut my calories in half. This made me more exhausted and emotional.

In my sessions with the o.t and physio we are doing transfers from chair to bed. Its hard as you will get one good day out of me and then my body just won't perform. I see other people on the course getting stronger and its making me feel like I'm not working hard enough.

My physio and o.t are still not on the same page. One minute i should get a new wheelchair as mine isn't supportive enough, the next minute its too supportive and i need better posture. I need a car i can drive my wheelchair into but then I'm supposed to get stronger with my transfers. I'm so utterly confused.

My o.t wrote in my notes that I'm  resigned to life in a wheelchair and that i may not want to stand at all. I think she has misunderstood me. My walking declined over the years. It put a lot of stress on my joints and i ended up only being able to walk a few steps. I never gave up on walking and could of put myself in a chair many years ago. Eventually i lost the ability to walk and have again fought hard to regain some back but to no avail.

What people don't realise is when you have a chronic illness, walking is not going to make the symptoms go away. In some ways it will make life easier but it will also make it harder. I have more energy from a chair than walking. However one day maybe i will walk again but its not going to happen in 3 weeks.

I have other issues going on such as my gastroparesis. My feeding tube is still pretty new and my stomach has flared up. Without nutrition my body doesn't work. Simples.

Ive decided to speak to her on Monday but not sure how to word it.

I have one more week left at rehab and have made some good friends. I have learnt a few things about pacing and exercise but would like to learn more assertiveness.

Right now i'm feeling terribly low, angry with myself and an utter failure. Hopefully tomorrow will be better day x

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Loves textiles, stitching and anything cute. Daily battle with ehlers danlos syndrome, gastroparesis and tube fed x

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