Sunday, July 22, 2007

Dream a little dream of ME

I I had a strange dream last night, I've not been sleeping very well again because of my dreams - they're always quite realistic, more like memories than dreams which can make things a tad confusing on occasion..

Basically I dreamt I'd been blogging about CFS and through the blog had been offered a research opportunity, to have a thorough going over by a nutritionist and three different doctors (can't remember the specialties but they overlapped in some way) after establishing that i eat most of the right foods it turned out that drinking tap water was actually causing most of my problems - apparently certain bottled waters also contributed.
This then led to me going on a program researching the types of bottled water available and the actual mineral content of them - it was then narrowed down to 2 that were acceptable to me personally and if I only drank those I was basically cured.

The last portion of the dream I remember was emailing the support group to explain that I didn't in fact have ME/CFS I had been misdiagnosed. Instead I had a chemical intolerance that had built itself so high even trace amounts affected me, chlorine and a couple of other things were the main culprits of the fatigue, brain fog and various aches, I just had to rely on supplements and avoid those 'contaminants' as much as possible..

*sigh*
If only that were true eh?!
I could live without tea and coffee (decaf of course) it would be a wrench at first, a nice hot drink does wonders on a cold day - but if it meant regaining my former cognitive capabilities and not suffering this awful tiredness all the time.. Meh - no contest!

I'd also have to ensure any boiled water was water boiled from the 2 bottled sources and not from the tap, this could prove expensive as far as cooking etc goes - but I'm sure that could be worked around.. Basically I awoke with the name of this condition in my head - it was three initials; CT or CN something but the name dissolved even as I was forming the intention of googling it out of idle curiosity.

Would've been freaky to find such a condition existed. The thing is, after doing all the research and finding out what it was called, I had to go to my doctor to be tested for it - she refused on the grounds that they couldn't be sure that's what I had, I remember the agument and the disbelief that this was the way the NHS was going, her hands were tied though, it seems in my dreamworld that people were only sent for tests to confirm a known condition, because I already had a diagnosis of CFS/ME this dream doctor wouldl not send me for tests to confirm the illness I actually had - which meant I couldn't get financial help towards the plumbing changes it necessitated in my home..

Like I said, very realistic dream, quite disturbing. I guess it shows i'm still hoping after nearly 4 years to be told there's been a mistake *sigh* you'd think I'd know better by now.

Wednesday, July 18, 2007

Remember the pace

The last 2 days have been a wash out as far as life is concerned.
It's been a busy time though so there's only myself to blame, I know what happens when I overdo it but I just didn't listen to reason this weekend.
But it was so worth it *grin*

I actually danced! I haven't had a good dance in years! my cousins wedding was brilliant - ok, the weather was pants, but the ceremony and reception made up for it, she looked stunning (I did too apparently, everyone kept saying so - so much so it felt like they were over compensating slightly.. but that's just my paranoia kicking in) and the atmosphere was just what you'd wish for; nary a fight and good times all round.

Sadly the all day event combined with the dancing and the incredibly late night wiped me out, I spent most of Monday in bed and yesterday was the same, I'm still aching to buggery and feel a tad shaky but at least I can mentally function again.

It's all proof of how well i'm doing though - just last year i'd have been out for a week after that kind of exertion, now it's only stolen 2 days from me.
Things are definitely looking up!

Saturday, July 14, 2007

mini relapse time again

This morning saw the return of the grunting immobile shell that is me when things are bad.
Stef had to lift me out of bed, carry me to and from the bathroom and hoist me back into bed. Little reminders like this really suck.

Still, as Stef told me when the tears started this morning, "there's no point in crying babe, you have to expect it, you have this illness for life so it'll happen occasionally. You have been doing a lot lately" He then very sweetly reminded me that he's here to look after me and that I have nothing to worry about.
My man is the best.

I've had a full body massage, particular attention to my feet since a good foot rub can sometimes bring me out of it, when that failed he just made me as comfortable as possible and told me to sleep as soundly as possible through the banging and shouting from downstairs.

I must have managed it because I only vaguely remember Stef kissing me on the forehead and asking if I wanted a drink or anything before he went out (we're going to a wedding tomorrow and there's a couple of bits to get, serves me right for leaving it to the last minute really)
Anyhow, that was at about 9am so I should be ok. Going off past experience if i'm having a REALLY bad one i'm out for the entire day, it's only been about 4 hours and I'm up, brain is functioning and I've managed to fix myself a bowl of cereal.
Just means I need to take it easy so I won't spend too much time on the pc today..

I know it's not stress this time at any rate. The medical assessment doctor must have had a different reaction to my answers than Stef and I did because I had a letter through telling me I have my benefits for at least another year. Another stress reliever came in the form of a telephone call a few days ago.

We're moving. Finally, we're escaping the neighbours from hell.
In about a months time Stef and I will be relocating to Bushey in Watford. I can't wait.

Not only will I be an hour away from my best friend (as opposed to about 5 or 6) and the same distance from various other friends around the area, I've found a course at Watford college (franchised from the university) that far surpasses anything I'd hoped to do in Manchester.
I've been trying to sort out financing this week, all that running around is probably what contributed to todays little hiccup, but fingers crossed I'll be on that course come september.

If I'm not I'll be contacting the DEA in Bushey and trying to get some permitted work and applying to do my maths GCSE again (or whatever equivalent is offered on govt. programs alongside permitted work) I'll just try again next year for the course I want.

Either way, the future is looking bright, I have goals, I'll be surrounded by friends and I'm not letting a little thing like a lifelong chronic illness hold me back!
Now I'm going to sit by the window and listen to the massive fight going on downstairs - I can laugh instead of despair at my surroundings now an end is in sight *grin* Shame I have no popcorn to hand really ;0)

Thursday, July 05, 2007

I'm cured!

Well.. If you discount the aches and the tiredness and the easily distracted/don't listen to people/ can't carry a conversation thing.

I'm expecting to be told that I'm no longer eligible for incapacity benefit very shortly following the medical assessment I had yesterday.
I had a very nice doctor this time, he didn't make me feel defensive there was no looking down his nose or air of disgusted superiority. He had on a very nice tie though and I kept being distracted from the questions he was posing through admiration of it.

I think I am ready for work though I would much rather embark upon a course of re-training in web design as it would benefit me more in the long run. I guess I will have to see whether that option is available to me if (as I suspect) I'm soon to be on JSA as opposed to incapacity benefit.

After reviewing the answers I gave the assessing practitioner both Stef and I came to the conclusion that really it must be fear stopping me from working, it's a confidence thing .
I may be tired, I may not sleep well and I may be in pain all the time But.. I am able to function, not as well as I once did admittedly, but well enough to take on a course of study - which in turn means I'm well enough to hold down a job.. I think.

This being the case I have renewed my efforts to reestablish contact with Ms Brady of the DSS to see whether I can in fact opt for retraining.
I've found a course at mancat that looks like a good starting place - I've also come to the sad realisation that I'll have to re-do my maths G.C.S.E. There's no getting around it, an 'E' grade just won't cut it so these are my first 2 baby steps.
From there I'll need to look into finding a course to further my interest, probably some computer science degree thing but most of the ones I've looked at have a LOT of algebra modules (good job that was my fave part of the maths curriculum at school huh?!) which is what made me concede the need to upgrade my G.C.S.E. level (well that and an a-c grade is a mandatory requirement to get on the course)

I know.. Why computer science if I only want to be a web designer? Basically, long term I want to work from home, for this goal freelance web design would be ideal.
Realistically I know that is not something I could start up straight away, I'll need to find a company to work for and there is more demand for people knowledgeable about database maintenance than there are for freelance web designers.

My goals are:
  1. 2007-2008 Maths GCSE at grade c or above
  2. 2007-2008 Learn mysql and php
  3. computer science degree - preferably one with a work placement year.
  4. job within the I.T industry
  5. network network network
  6. work from home as a freelance web designer.
I'm not putting dates on anything beyond those first 2 goals because there are financial factors to take into account and they are the only ones I know for definite are achievable (that and anything can happen between now and 2008)

I'm at a point where I know I can work part time possibly full time but I'm still wary of doing too much in case of a relapse. So.. I have the choice of getting a part time monkey brain job that barely covers the bills and will end up going nowhere or staying skint a few years longer and re-training into something more like a career.

I just hope I have the option to pursue my first choice, I've done enough monkey brain low paid jobs to last a life time, that's what probably put me in this situation in the first place - this time around I want a different, more fulfilling life.

Fingers crossed eh?!