So this week has been a lot less hectic than previous weeks. A real slow down – EXACTLY what I needed. I had a couple of things that I was supposed to do this week, but for one reason or another they cancelled. And you know what? I’m glad. I have become so exhausted that it has been so lovely to take a step back and get things back in order. I have been so busy getting all of my school work done and chasing a decision regarding some funding that we have been waiting five months for now, which is ridiculous. I have been using my writing skills to write many, many letters. Mum and I keep saying “Things will get better!” We’ve been saying that for two years – but things really will get better. Everything just takes a very long time!
The palliative care nurse is going to be paying me a visit tomorrow morning. Please don’t read palliative and instantly assume I am dying. Just like the role of the hospice, the role of the palliative care nurse is changing. I am classed as a palliative care patient because I need supportive management. There is nothing anyone can actively offer me treatment wise that will improve my situation or fix me. We are hopefully going to discuss some kind of pain relief, however, it is really difficult because most pain killers interrupt your gut motility (and mine is already pretty bad, so we don’t really want to go messing with it).
I have uploaded a new video to my YouTube channel, which you can watch by clicking HERE. In it I explore some of the things I have gained from being unwell. I know that sounds like an odd premise, but I talk about how I have re-evaluated life and what I would like from it, and trying to make negative things positive. I got a comment on one of my videos a few days ago from a company trying to tell me my condition could be cured by stem cells (uh, no) and when I looked into the ‘diseases’ that they said the treatment would work for, one of them was “aging!”. It made me chuckle anyway.
Mum and I went into Preston for a bit the other day. I introduced mum to the exotic thing that is the Waitrose Café. I never got the opportunity to eat in there, but I always thought the food looked really fresh so she had a cous cous and pulled pork wrap. I actually really enjoy sitting with people while they are eating out. It makes me feel normal and I enjoy remembering what each thing on their plate tastes like. We didn’t travel all the way to Preston just to go to Waitrose though. I think HomeSense heard me coming because they reduced so many notebooks I was in heaven. There was a large Paperblanks for £3 and a large red leather notebook also priced at £3. I didn’t feel guilty getting a few notebooks that day! It was wonderful to go out with mum. We really felt like we had our old mojo back. Our mojo from before my tube became dislodged, before I had the failed and successful operations, before mum became unwell. It was so lovely to feel so relaxed. We came home to lots of messages on the answering machine, but it was totally worth it.
I have just finished listening to ‘The one memory of Flora Banks’ by Fiona Barr. I really enjoyed it, there has been a lot of hype and advertising surrounding it so I was excited to pick it up. I even saw an advert for it on the TV! It centres around Flora who has Amnesia, and can only remember things from before she was ten (she is now seventeen). I can’t really talk about the book without ruining it. She writes everything she knows in her notebook or on her arms so that she can remember things when her memory goes blank. I don’t usually enjoy unreliable narrator narratives, but I think this is really well put together. The book got a little boring in the middle, which was when I was glad it was an audiobook – but it really pulled together at the end. In some ways, I could really relate to Flora. I don’t have anything nearly as bad in regards to my memory as her, but I have to write things down otherwise they just disappear. That’s why I go through notebooks very quickly. I also have a bit of a ‘butterfly brain’, as my family call it, when I am on feed. When I am on feed or having a POTs attack I have to say what I am thinking out loud at the moment, even if it is completely out of context, otherwise the thought is gone forever!
I have been doing lots of reading and writing this week. I got a new desk and new office chair. This is to make my office more accessible and hopefully elevate some of the terrible pain I have been getting from being anywhere other than my bed! The office chair was ordered by my occupational therapist and is wonderful. I can adapt it to exactly how I need it, every position is possible! It also has a foot plate which is a complete god send. It supports my stomach and stops the feeling of it pulling all of the time. It has also helped a lot with reoccurring back pain that I am getting. It is so supportive. To go alongside this, in order for the chair to fit under a desk, I have had to buy a new desk. This desk is a corner desk, so that my work surrounds me and I don’t need to get up or twist for no reason. The desk is also everything I hoped it would be. This combination means that I can actually sit at my desk like a proper writer and do my work in a lovely space away from where I sleep.