Yesterday evening I got realeased home and after a true hack cross london, a cheeky burger king we got home around 10pm. Which is great, yet bizarre. I’m still waking myself up at 2am and 6am ready for the nurses to come in and do my obs/bloods. I still managed to get some serious snooze time in though and finally woke up at 11am. Also peeing straight into the toilet is a novelty, I’m still looking for my jug or trying to estimate the size of my wee!
It quite tiring being in a house rather than a tiny room with an ensuite. I’ve pretty much had to have a mini lie down after walking up/down the stairs (going down is actually harder). Also I’ve been getting this weird restless leg thing where after moving around a bit my legs become ridiculously itchy, its like my skin feels like there are bugs crawling under it! I’m also getting spasms in my muscles too. Think this is all as I have started moving around the house more and activating all my muscles again.
So what did I do with my first day of freedom…..
First thing I did was sort out my drugs. This is my breakfast and dinner….. who needs food when you’ve got this lot to take!!! (Luckily as I’m on tacrolimus rather than ciclosporin then my tablet collection are mostly small ones (cicloporin tends to be known as horse tablets!!!!))
At lunch today I had a interview/chat with Emily from Anthony Nolan to talk through my experience of applying for IFR (individual funding request) for the second transplant. It came back pretty vividly how stressful a time i was. Hopefully we will see the full campaign to get second transplants funded next week or so in some of the bigger newspapers. Will keep you all posted.
This afternoon I had a short visit to PCH for a quick check up on my bloods. Was lovely to see the nurses/staff and have a catch up. Lovely to see all the friendly faces. Then we popped to Sainsbury’s to grab some food for me. Found it totally overwhelming trying to think about it. I haven’t really been thinking about food much over the last few weeks as I’ve just been trying to force things down despite no appetite and limited choice on the menu (when you’ve been in and out for 6 months it feels limited!!). Having a whole supermarket full of food kind of stumped me!!!
This evening bought an element of normality having some friends round for a catch up with Dominoes and ice cream. I actually amazed myself in how much i managed to eat, probably due to the relaxed setting…….. Fire, good food (well trashy food but i fancied it!!), good company, chillleeeddd……
Tomorrows jobs…….Actually start unpacking some of my crap and do my tax return!