Lots of (Good) News

I thought we could do with a little positivity after my previous overwhelmed and gloomy post. In bullet point form :

- My communication cards arrived. I haven't had to use them yet (typically).
- I got my discretionary blue badge.
- To celebrate I got a pretty holder for my blue badge which arrived super quickly in the company of the radar key* I'd never quite got round to ordering before.
- The next day my DLA letter arrived - I got high rate mobility and mid rate care as I hoped. I was expecting to have to go all the way to tribunal so that was a welcome surprise. The awards are indefinite, which for me will probably mean until I'm assessed to transfer to PIP at which point anything could happen.
- This means that I can apply for a motability car. I can't tell you how much of a relief that is. My driving test is coming up pretty soon so I'm hoping that this run of positivity will extend that far!
- The payments get backdated to when I got the form in February which means that I can afford a couple of impairment related things (such as an exercise bike to maintain muscle tone in my legs) that I couldn't afford before.
- I had a cardiology appointment yesterday. This would not normally be good news. I asked him about my diagnosis and we had quite a useful conversation, the upshot of which was that I have autonomic dysfunction (quelle surprise) which 'seems to be more the POTS than the bradys and the vasovagal' (and I quote). He is king of vague and his English is not great, but in short I have (the) POTS. As with every diagnosis it's bittersweet - yay I know what the incurable chronic illness I have is called. Tis a step in the right direction anyhow.
- And best of all, my civil partnership is one week tomorrow and the blessing is two days after that. Exciting!

I feel a little guilty because I know that a lot of you are not having a good time of it right now, but equally I know that noone recognises the importance of enjoying the good times like folk who have more bad days than most. So for now I'm enjoying good fortune, keeping out of the heat (DLA backpay meant that I could buy a decent fan to stop me collapsing several times a day every time the temperature goes over 20 degrees) and resting up before the big day(s) (long weekend really).


*Radar keys unlock disabled toilets signed up to the radar scheme (in a lot of public places like stations and shops the toilets are locked to stop people trashing the place etc. This is good because I'll stop having to go round the houses to find the person who knows where the key is, but I don't like the system at all. Well, rather, I don't like that it has to exist, as in I don't like that disabled toilets are locked. But that's another post.

"Cheer up love, it might never happen"

The last couple of days I've had a fever. That, combined with the marginally hot weather has really pissed off my malfunctional autonomic nervous system. I've spent the last two days with a seated pulse in the region of 120-150, temperature regulation all over the shop and feeling sick. I haven't been in to placement, being as fainting on patients tends to be frowned upon.

I decided to keep my hydro(therapy) appointment, because I hate wasting appointment time. I warned the physio I was having an "ultra-bendy" day, and he seemed to get the picture pretty quickly when both wrists, elbows, shoulders, patellas (patellae?), hips, and several ribs all needed relocating at least once. He said it was useful to see how bad things could be, which is good I think. But then I passed out climbing out of the pool, and had to do some fast talking to not end up in A/E.

Then on the way home, the bus driver didn't stop at my stop, even though I had rung the bell, and then rung it again as he obviously made to not stop. He let me off at the traffic lights because a lady shouted at him for me. This proved to be the last straw for my tear ducts, so I was walking forlornly back to the flat leaking from the eyes, prompting an it-might-never-happen attack from a passer by.

Had I been more coherent and less snotty, I would have been inclined to ask him why exactly he thought I was walking down the street in tears if "it" hadn't already happened.

I get extremely frustrated when I am discriminated against by people refusing to meet my needs, but I am not given to self pity. I would just like to get on with the life I find myself in, thanks. Not that I'm some kind of saint or anything. I've had a few I-just-want-it-to-be-easier crying sessions, but, actually, having a diagnosis at last has made things more cope-able.

What is this "it" to which he was referring? Yes, I am engaged to a beautiful, caring, smart and infinitely capable women, yes I am writing this with a blissed out cat on my feet eating a takeaway (no, my cat is not eating a takeaway), yes I have an education and the chance to do a job that I'm really passionate about, and the best friends and family I could ever ask for. Nothing cancels any of those things out, but I am also coming to terms with a new, life-changing diagnosis, and learning to cope with chronic pain and its friends.

There are worse "it"s, but this is mine, for now. And if you really want to cheer me up, I suggest providing me with one of the following : dark chocolate with ginger bits in, cherry tea, a hug, a hot wheat bag, a compliment on my awesome stripy stick, a new craft project or a vegan cookbook.

Edited to add : cherry tea and a hot wheat bag have just appeared in front of me, and a vegan cookbook is winging its way to us. I love my mrs =)