Wednesday 23 May 2012

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.


  1. Congratulations! That is a lot of excellent news, I am very pleased for you :) This restores my faith in the system and provides me a little hope for my future medical career as well. Congratulations to you both on your upcoming civil partnership too :) xx

  2. I think when a person belongs to a 'club no-one wants to join' there is a very unusual thing that happens, whereby we really learn to rejoice in other people's 'good news' and 'less bad news than our own' without envy or whatever. It IS good that you have good news, I am glad for you.

    So, what I'm saying is guilt is verbotten, just savour your good news and good moments :-)