Well, this morning started swimmingly- quite literally!
I woke up 'swimming' in a pool of feed, I was covered! How on earth I managed to sleep through being absolutely soaked I do not know. That's Chronic Fatigue for you. THEN we (the nurses mainly) tried to change the connector on my jej tube and....broke it. Luckily the nutrition nurses G & J came to save the day with a new kind of connection:
I thought I would start with this:
This morning I decided " I AM GOING TO DO THIS!"
I got in the shower, Mum did all the hard work...but. I was up- I washed my hair, I put on real clothes and make up, I went outside and I did it! (Thanks Mum!)
Right now my health is so unpredictable, one minute I feel stable and the next the pain kicks in, or the sickness, or the upset tummy, I feel disorientated and just very unwell. It coincides with having my medication and when my small bowel has to handle more fluid. It's hard because now I am starting to get nervous about taking my medication- which shouldn't be the case, but I know how it sometimes makes me feel.
But the big news....I am now assigned a social worker and on Monday there is a big meeting discussing the plans to GET ME HOME! Yes! Home! That place people usually live without all the beeping machines and constant chatter! That place where the walls are filled with pictures and the feeling is warm. Oh home, how I have missed you.
AND before that I should be having Day leave to get me used to getting into the 'swing of things' and making sure this discharge does NOT fail!
Oh, I am just so excited. But this is the hardest part. I have to remember I am still very unwell, and need to take things steadily. I need to remember how much my body has been through and the time it is going to take to repair. This is such a huge step, so needs to be planned to the finest detail by numerous people. I may not be able to walk, or eat/drink...but I am hopeful for my future- which I know is still so bright! Because there IS good in the world, there is Happiness and there IS beauty!
Thanks all,
Chloe xxx
Hey lil one. Just thought I'd drop by and leave you a comment. I read ur blog updates as soon as you update them. You have had such a crappy time out it this past while. I can empathise with a lot of the issues you are going through as u know I have gastroparesis, EDS, PoTS, chronic lung disease, epilepsy, anorexia. You have come through so much and always have that beautiful smile. You are such a beautiful sole honey. Like my favourite fishy Dori says 'just keep swimming, just keep swimming love Gilly xxx
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