I saw my GP this morning about my pain medications and dosages. I booked a long appointment so we could discuss everything. He started off very hard line, but quickly softened. I looked like poo. I had about two hours sleep last night. Tired. Very foggy. And we could both hear all my joints crack whenever I moved anything. I’m convinced he’s under pressure to lower my doses, and it’s not coming from him. He was very understanding, in fact.
This morning I woke up with an eye bleed. They are harmless, but they are a sign of high BP or spiking BP. I used to get them often.
I took my BP to find it was 168/84. While I was on previous biologicals, that was ‘normal’. I still can’t believe none of my doctors decided to treat that. I knew it was bad, but I didn’t fully understand the implications. cos I don’t actually have a medical degree. I’m just an enthusiast. By necessity.
There’s a lot to consider when you buy a wheelchair. Sounds simple. You need a wheelchair, you buy a wheelchair, life gets easier. Except like most things, it’s not that simple when you’re standing on that precipice.
My service dog trainer has a disease that causes progressive paralysis and weakness (not to mention pain) and she is in a wheelchair full time. She told me I’m what ‘they’ (people who are wheelchairs full time) call ‘lucky’.
I don’t have an appetite. People joke and say “I wish!” but it is not a good thing. What it means is I find it hard to eat, I can’t enjoy food, and while food is primarily nutrition – fuel for your body, it is also a huge source of pleasure, and social interaction. People gather for a meal to enjoy it together. If you don’t eat, people notice, and sometimes become uncomfortable. And enjoy their own food less. Or they don’t eat either. (‘Oh if you’re not having cake, I’ll just have coffee too…’). It’s awkward to say the least.
My daughter just texted me from her bedroom. This is the text she sent:
‘Mum I don’t feel safe anymore with <name of her brother> around it’s either he fixes his temper or I am going to be forced to leave’