Well, I was awake at half-past five in the morning, again. This irritating state of affairs, dear readers, has arisen because of a wonderful painkiller called tramadol – it does quite good things for my pain levels, and horrific things to my head and my sleep patterns and my ability to walk in a straight line (which was never that great to begin with). Can’t win. Apparently this is typical of this exciting condition thatI’ve just found out I have – painkillers aren’t all that effective, so the side effects aren’t often worth the effort. Fabulous. A condition with the effect of chronic pain, on which painkillers have no effect. Clearly God has a sense of humour. Bah.
However, the main events of the past month have been largely satisfactory, with just a few things bringing me down. I shall discuss some of these events. (Aren’t you lucky.)
I’ve been stressing about the whole DLA saga since January, when I first applied, and especially since March, when I applied to appeal the decision (of lower rate care – I got higher mobility). A couple of weeks ago I went before a panel to argue my case. After much crying, arguing, stressing, trying to persuade a doctor that EDS is a real condition, and generally losing the plot, I was awarded higher rate care (and the higher rate mobility was confirmed).* This is simply marvellous. The backpay will help me if I go for the course I’m thinking of taking next year – but that’s another story for another post. It generally helps me in a number of ways that are Very Good, not least because it gives me a bit more money to live on – which I desperately need if I’m going to fund my own physiotherapy for the EDS.
Meanwhile, I’ve fallen in love – yes, I have a new woman. (See above.) She’s crazy, and lovely, and always wants to be on the go, and gets me from place to place much more easily than I ever thought a manual wheelchair could. She is called Luna (we went through several Harry Potter names before settling on that one – she just wasn’t a Bellatrix or a Rowena). She is fabulous.**
Beyond that, nothing particularly exciting going on here. Work is driving me slightly crazy. The meeting that I set up with Personnel was OK, but not great. After a fifteen-minute detailed discussion over whether I could leave half an hour early on days when I was tired, which left me feeling incredibly guilty for being ill, I chickened out of asking for even more flexibility in my hours/days. It was never going to happen. These employers are quite good when it comes to physical adaptations – I got a sliding door put in between my office and the staff room in the space of two weeks – but they can’t cope with anything unusual, and they don’t quite understand the concept of reasonable adjustments. Yes, I should be fighting for my rights and the rights of future disabled employees. But at some point I need to stop being an ambassador for disability equality, and start getting on with being a teacher. If I don’t, I’m going to go a bit mad. I’m already feeling very low about my career, my future job prospects, my ability to balance work with being a rather ill person, etc. I have A Plan for getting myself out of the drudgery, but it’s going to take some time. Meanwhile, I’ll be the one asleep on the desk in the corner…
*The Girl tells a different story. She swears I cried for exactly the right amount of time (about 45 seconds, she says, which was apparently my quota), said all the right things, defended myself and my condition admirably, and was able to argue like the coherent professional I am (heh) while also demonstrating that I am useless enough to meet the higher rate criteria. The woman is delusional, but she’s convinced that’s how it went.
**The Girl gets a bit upset when I’m this excited about her. Heh.