Stuff Wot Happened

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.


13 responses to “Stuff Wot Happened

  1. A second set of wheels?? Do explain. You mean the tippers at the back? They’re because I fall backwards. Or the black things – they’re just covers over the parts you push (which are metal when not covered) – the cover helps me to grip, ’cause me hands aren’t good.

  2. Luna is stunning! glad she is able to help you bunches. I wish I was near. I would want to test drive her. lol Glad you posted. I was waiting for more.Sucks you have to be easy at the job. I was a child advocate for so long it wore me ragged and would just make me more sick. I wish you could get some time off to rest. Too bad they couldn’t provide a nap/ resting place for you mid day or shift.keep us well ME posted.Cocoa

  3. Congrats on the DLA, also, I thought you might like to know, painkillers can work well for many people with EDS as part of an overall self management strategy. It’s local anaesthetic that tends to have no effect on the majority of those with HMS/EDSIII as well as some with other types. It may just be the particular medication you’ve been prescribed not working for you, I personally had little success with tramadol, is your GP approachable to discuss options? I hope you can get something sorted fairly soon regardless, Bendy Girl

  4. congrats on Luna (is she a Quickie 600 – there’s the tech geek in me coming out) – I have the “all grip” covers as well and found that synthetic leather gloves are the best for going downhill and not getting that burning sensation (if that is any help) – either way, congrats on your new mobility addition to the family.

  5. Elizabeth: She’s a Kuschall Compact. I’m hugely impressed with her so far. Thanks for the advice on good gloves for the covers! I’m not spending any money on gloves just yet, as I’ll be getting wrist splints made to wear while pushing soon, and in the meantime I’m using OTC splints most of the time, so gloves are a bit pointless. I might try and cover my splints though. Or see if gloves work on short distances. Hmm. Complex.BSS: I’ve been told (by my ‘European expert’ consultant) that my inability to get any benefit from most painkillers is EDS-related, for similar reasons to why local anaesthetics don’t work (which is also a problem for me). Tramadol was working pretty well until the headaches started kicking in, but nothing else touches the pain. I’m working on the GP – she’s starting to come around to trying more creative things with me. Will keep you all posted (or bore you to tears with it, you choose).

  6. If you are one of those who doesn’t get much benefit from painkillers then that’s great (actually it’s crap, but you know what I mean!), but I just thought you might like to know that although that’s the advice given by one international expert, the other based elsewhere in the UK takes a slightly different attitude towards painkillers, although he still acknowledges getting relief from them can be a major problem for some. I personally think its all well and good to agree that alot of painkillers seem to not provide adequate pain relief for some with HMS/EDS III but not much use unless coupled with suggesting decent alternatives! Bendy Girl

  7. Rosumundi: I’m hugely disturbed both by this legislation (which has already been passed – they’re just ‘spinning’ it now) and the appallingly disablist coverage of this story by the media. I might save my rant on this for an actual blog post, though. Suffice to say that I think this government has always been happy to treat disabled people like scrounging pariahs, and no wonder discrimination at work and in society continues to be such a problem when the media picks up on this so very well…

  8. Ooh, I’ve tried Tramadol; it gave me vertigo and made me really sleepy and I had a dry mouth the whole time. For my daily pain, I’m on 500 mg 2x/dy for the arthralgia, and that seems to be working pretty well.Odd you mention the issues with local anesthetics — for years I’ve been having arguments with my dentist because things either hardly work or else wear off much quicker than he thinks they’re going to. Had an appointment with my rheumatologist today & enquired about EDS (as I’ve hypermobility issues affecting the arthralgia), but she confessed that she doesn’t know lots about it; seems to be more into the autoimmune end of joint issues than the genetic. She mentioned that there’s no cure or treatment, and I explained that I’ve a child who’s equally bendy (= genetic) and w/o a dx, there’s no way of getting any future benefit from new advances. Which-all leaves me looking for more info, I suppose …Congrats on the chair — green IS the best color, of course! Now you need some wicked green bike gloves or some such?

  9. Oooh … shiney new wheelchair! Lovely.Don’t know if you can combo this med with others but for headaches/migraines have been finding Sumatriptan really good. It’s not a pain killer (apparently pain killers aren’t brilliant for migraine/tension headaches anyhow). It twiddles the blood flow to your head (I forget if it’s an increase or decrease).Sounds like your GP is learning about how to manage this too.Bad that work is still sucky. Your experience of reasonable adjustments seems like a familiar story. Bah!

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