Rehab day 6

i have been awake since 4.30am and arrived at stanmore at 8am. I feel asleep in the car. Hope i didn't snore.

Im the first one here and haven't got my first session until 10am.

Weekend review

My first session was to go over our goals that we set last week. I felt really lazy as everyone else managed to do fun things at the weekend and i just slept. My goals were : to perform physio throughout the day, to complete activity diary, to pace washing and dressing, to order some aids, to pace tidying craft room and to use post it notes to prompt good posture.

I achieved most of my goals but sadly didn't get into my craft room as i was to exhausted.

Anatomy and healing

In this session we went over how the bones, muscles ligaments and tendons worked and the effects ehlers danlos syndrome has on them. To be honest it was abit boring.

I had a break between 11.30am and 1pm so thought i would get some sleep. It was not to be as the other girls have endless energy so was very noisy even with earplugs.

Goal setting

We discussed how goal setting can help you ficus and feel like you've achieved something. I found this session quite useful.

I was then off to see the o.t. She had a look at what i did over the weekend and then we colour coded my activities. She then asked if i slept because i wanted to get out of dealing with life or something along those lines. I was deeply offended as in the early stages of my illness this was suggested, but now i have alot of medical letter that explain my conditions and symptoms. Ive tried not sleeping in the day and i end up even more unwell.

The course is centred around pain management and theres alot of people in here who don't do anything with there days and will just stay in bed. I do not accept being put into the same category. Ive fought hard to get to the level I'm at and now i'm questioning myself.

After a tearful session i went onto physio. She doesn't want me using my wheelchair headrest so she flipped it back. I feel like everything I've fought so hard for is being taken away. I feel like saying ' here take my chair, take my slide board, take everything as I've had enough.


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