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.

Monday, May 23, 2005

Those lovely benefits people

I went to the housing people today to clear up a few things, the lass behind the counter was abjectly apologetic (always nice) and gave me a complaint form...

Now, what on earth makes me think filling this out and handing it in will have any effect whatsoever? My current problem stems mainly from their inability to check a form in the first place?
Seriously, I have many times mentioned the complete incompetence of the Manchester city council's benefits unit. They give you a receipt everytime you hand anything in to them, then when they lose it and request it again and you show them the receipt they say "well we still need to see it I'm afraid, your claim is on hold until we receive this information..."
Surely it would be far more cost effective for them to save the paper, unless it's all part of the psychological warfare designed to make all claimants give up and live on the streets instead of 'sponging off the government'
People I swear to you, dealing with the benefits agency is a full time job in it's own right!
This latest fiasco says it all.
They stopped my benefit completely because they were querying a cheque deposited in my account in January. It was a large sum, just over what my monthly wage used to be as it happens.
It wasn't a wage however. Oh no, that would be far too easy and convenient for them - after all, I'm on benefit because I want to be, I love the fact that I was forced to leave a well paying job and end up in a large amount of debt due to illness.
Really. I do.
The joy I feel every time I see my bank balance now is just indescribable. That 90% drop in income just does it for me every time.

The sum in question was my benefit.
From them - the people querying the sum, you know - our highly efficient county council benefits agency/ treasury department.
The reason the amount was so large - it was backdated for the almost 5 months it took to get it.
Why did it take almost 5 months to receive when they state it can take up to 28 days to process a claim? They not only asked for the same information at least 3 times (at around 3-4 week intervals) they then asked for different information from both my Dr and my employer - several times.

But hey! They're busy.
The fact that they are also in receipt of a letter from my GP stating that stress exacerbates my 'disability' has obviously not clued them in to the fact that I'm on incapacity benefit and need help with my rent because I'm unable to work.
I'm not on jobseekers allowance (a.k.a 'the dole') I'm not trying to 'play the system' I just want things settled so I can concentrate on getting well again and off all benefits for good!

*deep breath*
Silver lining... Silver lining...?
Oh yeah, I get to spend more time with my baby than I would if I were still working all hours god sends, I went to Madrid, I've caught up on a lot of reading...
So it's not all bad.

I'm feeling a little hormonal today - can you tell?
I'm also a bit worried because I have a Dr. visiting tomorrow, my first home visit. His report will have a direct impact on my benefits, this would not worry me if my symptoms were straight forward and highly visible.
They're not. They also fluctuate wildly - I never know from one day to the next how I'm going to be, today has been pretty shit so going off past experience tomorrow will either be worse or I'll be functioning at 'normal' speed.

ARrrrrrrrrrrgh feck it!
I just need chocolate. A fuck off big slab of Cadbury's Caramel would hit the spot right now.
Which is weird, I never used to like that... Damn these cravings!

Monday, May 02, 2005

Stress, stress and MORE stress!

Mum got married yesterday.
It's been a nightmare the last few weeks because one minute it was on the next it was off and I've been slap bang in the middle of it - which means I've spent a lot of time in a none functioning state.

It's true, stress really does shut you down.
I must have been daft to think I could start an excersize regime at the hospital while all this was going on. I missed the last 3 appointments because I literally couldn't move, I'm going to have to call them and try to explain so they'll consider letting me try again.
I do think it could help, I just understand now why the others I spoke too were so pessimistic about it, you can't control when you're able to do things and though I have tried to at least attempt regularly keeping up with the exercises, I've done very little in reality.

The dizziness, headaches, muscle aches, head fog and mood swings have been in full effect almost constantly for weeks - I just hope that now most of my family crap is over with I can try and relax and get back into a routine of sorting myself out.
Wishful thinking maybe?
Lets hope not.