Saturday, May 28, 2005

What the..?

I went to Spain.
Yes I did. I guess that makes me an evil benefit bludger now.
Well I've been paying for it this last week trust me.

I've 'slept' most of the last 10 days away - that is I've been in bed and I've had a lot of dreams - I don't feel as though I've had any real sleep though.
It's almost as bad as it was when all this kicked in. The fact that I've also had the most painful period in months hasn't helped.

It's just been stress upon stress upon stress for ages, I thought when I went to Spain it'd be a decent break, a chance to pull myself together... It didn't quite work out like that for many reasons - which I really can't be fecked going into.
What also hasn't helped my state of mind is the DWP visit I had the other day. The Dr came to do my home assessment for Disability living allowance. He listened as I described my symptoms and asked good questions...
But he threw a bombshell at me as I was describing my 'sleepy fits' - these things have been my main concern from day one - they were what made me seek medical advice in the first place. He says they don't sound like CFS at all.
It also turns out that Margeret Miller, the lass I've been seeing at the hospital isn't in fact the specialist - She's a nurse.
So who the fuck has officially diagnosed me? Which was the very question (albeit phrased more politely) that the rather friendly DWP Dr asked.
I'd love to know.

His very words were "You should really ask to see Dr Snowden because those symptoms are not usual for CFS, they raise the issue of Narcolepsy"

So now 10 months into 'dealing' with all this, I have that thrown at me - the scary thing is, I've read the bumpf and it sounds very familiar.
But then so does CFS and Fybromyalgia and god knows how many other things I was considered for during the first round of tests.

I just think I should maybe start knuckling down and keeping a proper day to day journal - god knows this one isn't working.
I need to buy a big A4 page a day diary and USE it! I need to list so many things though it's going to be quite a time consuming task in itself.
  1. Food diary
  2. Sleep diary
  3. Dream diary
  4. Exercise diary
  5. Daily symptoms and what may have triggered them...
That #5 is going to be the tough one - as anyone in a similar position to me knows, they change almost as swiftly as the weather - and with much less warning.
I could also do with making up a weekly timetable for myself so that I can get back into keeping a routine again. That's the one thing that all those illnesses agree on as a key to controlling it. Routine.
I'm not very good at routine.

I've sent an email to the London sleep centre:

I have been diagnosed with CFS, however I have also been seen by another DR who thinks I may possibly have Narcolepsy as my main symptoms reflect this more.
Is it common for this kind of crossover or can a person be unlucky enough to get stuck with both conditions?

I am quite concerned. In the last 10 months I've been told so many conflicting things I'm not sure what to believe anymore, while everything I've read about CFS sounds very familiar, in the last 2 days I've read enough about Narcolepsy to worry me a great deal as this ALSO sounds VERY familiar.

Please can you put my mind at rest about this?
Many thanks

Here's hoping some one gets back to me soon eh?!
I did check around the site though and here's something I should probably bear in mind when organising my timetable:
Good Sleep Hygiene Promotes Better Sleep
Here are some tips that may aide in a better nights sleep:

1. Keep a regular sleep and wake time. Try to adhere to this every day.
2. Avoid caffeine and alcohol four to six hours before bedtime.
3. Don't exercise within two hours of bedtime. Exercising 5-6 hours before bedtime may help you sleep more soundly.
4. Avoid large meals within two hours of bedtime. If you feel hungry have a light snack at least 30 minutes prior to your bedtime.
5. Sleep in a dark, quiet room with a comfortable temperature.
6. Only associate the bed with two things, sleep and sex. Try not to get into the habit of reading and watching television in the bed.
7. Only go to bed when you are sleepy. If you cannot fall asleep within 20-30 minutes, get out of bed and do a quiet activity elsewhere and then return to bed.

Some experts suggest a wind-down ritual to aide in a more relaxed sleep, such as a warm bath, meditation, soft music or reading 30 minutes prior to bedtime will help you to sleep more soundly.
Right, despite being in bed most of today I'm heading back, I'm knackerd and aching like a fuquh.
I'll clean and hoover tomorrow. Really I will.

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