December 11th, 2012


Do they REALISE I have chronic fatigue?

The hospital sent me 16 sheets of paper, of which 13 are questionnaires that I need to fill in, one of which is double-sided. How the hell long is this supposed to take? The double-sided one in particular makes me laugh my arse off: Collapse )
If anyone has any ideas how ANYONE with a chronic health condition is supposed to summarise it in the tiny amount of space given, I'd love to know! Clearly, it will require attachments of extra sheets...

I have a Syndrome.

Just got back from hospital, and I have to say it was the most useful medical appointment I've had in years. She took me seriously, confirmed the diagnosis of chronic fatigue syndrome (apparently, lots of little things which I regarded as h-l oddities are actually symptoms of CFS - very interesting), and came up with a treatment plan which should not only be useful, it's exactly what I've been asking for based on research.

Unfortunately, the recommendations of the immunology consultant at Sutton Hospital for the treatment of CFS disagree with the NICE recommendations, so what will happen will be that he'll write a very detailed letter to my GP with suggestions, but the GP is free to refuse them because they're off-label prescriptions. Which is a bit annoying: I don't know if at that point I have the choice of simply going to a different GP, or what. As far as I'm concerned NICE can fuck off because they're still using the completely outdated term myalgic encephalomyelitis (ME) alongside CFS, and there's no evidence for any inflammation of the brain or spinal cord in people with chronic fatigue - else it would be easier to diagnose!

Also the nurse practitioner I saw today realised that I Have A Brain (TM) and did not waste time patronising me with small words. She said I had a "high degree of self-awareness", and we talked about things like T-cells, immunological memory, and adrenaline feedback loops. So yeah. Bloody brilliant.

Feel free to leave comments, but for those of you with less time/energy/spoons, here's a ticky box:

Hooray for a useful medical appointment!


Edit: Crap! I suck! Thank you very much to hatter for driving me & Richard to the appointment! Sorry!

Too Many Interests Time Again

My livejournal profile was horribly outdated again. Time to adjust my interests. Bloody hell, I had a lot to change - stuff on there that should have been removed 4 years ago, and other stuff that I should have added 4 years ago.

Removed: Collapse )

Added: Collapse )

Also, there is an actual description of me in the big box that previously said "This profile intentionally left blank", so if you've recently friended me (and I know I've gained 3 new LJ friends in the past couple of weeks), you should probably go and read it. Just to make sure that you don't suddenly hate me or something :D

Any comments or questions? I doubt any of you care that much, but feel free to ask if you do.

Jokes you're only allowed to make if you're disabled.

In the car on the way back from hospital:
Me: "Oh look, a cripple shop!" *pointing at disability supplies shop by the side of the road* "We should go in there to buy a shower chair."
hatter: "Or to buy a new cripple. In case the first one breaks."
Richard: "Oh no, my cripple is broken! I need to get another one!"
Me: "Aren't I enough work already without getting another one?"

Yes, you're allowed to laugh. I wouldn't be posting this if you weren't.