Day 1 in rehab.
Woken up nice and early to a day with nothing planned. Spent a few hours making bracelets in the conservatory with the doors and Windows open.
Then read lots, thank goodness for kindle. Got visited by Mum who bought me decent GF food and took me for a walk/wheel, my 1st look at the outside world here, the daffodils are beautiful and there are loads of crows building nests around the hospital. Came back and crashed for a bit before dinner.
Worked myself up to asking for help getting in the bath.. The nurses didn’t feel comfortable helping my until the physio has assessed me… so no bath for me. I can understand them not wanting to risk dislocations (accident forms / liability) but they don’t seem to understand that for me it’s not a risk it’s a certainty, it’s my normal and it’s not a big deal!
I cried a lot I’m not gonna lie. I cried about a lot of things mainly EDS related and the total change of lifestyle I’ve gone through and worse than that the total change of life I’m forcing others to go through…
Before Xmas I was helping other people learn safe transfers and coping strategies now I have to learn them again for myself. I have to keep telling my story and keep highlighting how far from my baseline I am.
I keep eating chocolate to cheer myself up then looking in the mirror and realising I’d gained too much weight before this and now more than ever my joints can’t handle the strain, but now more than ever I really want chocolate. Then I cried some more. I never did get a bath but I did lay myself on the floor and do some physio, then some push ups and crunches. It’s not much but every little helps.
I’m not posting this for sympathy but because I think it’s important to share the highs and lows of my rehab journey. If I ever get a stable internet connection I’m going to blog about the whole experience of going from patient to professional then right back to patient again. I can safely say I prefer being a professional!
Tomorrow is my initial Physiotherapy assessment. From that we can make a plan and maybe I’ll have some idea as to what the next few weeks or months will be like.
One thing I must mention is that everyone I’ve spoken to so far appears to be a human being! Not just sa faceless NHS robot. Everyone has also admitted to not knowing what Ehlers Danlos Syndrome is… This is a breath of fresh air after the staff at a previous hospital who tried to blag it and failed. I don’t expect people to know everything there is to know about EDS or PoTS or any of the other stuff I have been diagnosed with but I do expect a willingness to learn and everyone had been willing so far!
I must say after my initial emotional breakdown I’m looking forward to tomorrow and all the fun it brings 😉
Wish me luck folks.
