Work visit

I'm still at my pc, I've been here for the last hour or so since being awakened by a call from my mother.
Apparantly she's being referred to a specialist because her Dr thinks she has CFS too.
I'm not surprised.
Now I know what it's like I can think of so many incidents from my childhood that indicate she had it - I'm also ashamed for the numerous occasions I called her a hypochondriac behind her back and prayed that I wouldn't grow up to be just like her.

I think we can safely say I got my come uppance there - now I just hope I'm as strong as she must have been back then to cope with 3 kids even half as well as she did feeling like this all the time with no help, no recognition and less than no support from family and friends.

I'm just trying to summon up the energy to clear some of the crap from the front room so Steve and Racheal have somewhere to sit when they come later - I'm still tired, the aches are down to a dull murmer though which is good. The headache I awoke with has eased back as well.

I'm now going to get some porridge (flavoured with raisins and honey) and another pint of cordial before I get in the bath. Then I guess I should have another bash at those forms.
Joy...

Insomnia city

Since my last post I've done nothing but watch dvd's go to the loo, fetch drinks and check online forums and my blog lists - alternating between all three as my eyesight allows.
It's been playing up a lot recently and I'm so dry all the time - eyes and mouth. It probably explains why I'm so thirsty though, my skin is dryer than it's ever been in my life, my lips are constantly cracked and flaky - I've even developed some kind of eczma type rash all down the back of my legs and my bum!
(I know I know... TMI)

I can't sleep - I'm so tired I'm internally shaking (though I was doing that before the headache kicked in so maybe it's all part and parcel of the dropping things phenomena) but I can't sleep, my mind is racing. I went to bed at 2 but then after lying there tossing and turning, fruitlessly trying to find some position that eased the aches a little - I gave up and turned on the trusty pc again - I can always find solace online (assuming I can handle looking at the screen long enough)

I've got a home visit from work tomorrow. This has confused me - I was informed that they've stopped paying me SSP, I've even recieved the written confirmation of this (finally) yet my boss and his superior are still coming out to do a home assessment on me.
Ah well, whatever makes 'em happy - it'll be someone to talk to other than a hungover, depressed housemate.
Which is nice.

I need to finish filling out my benefit forms tomorrow so I can get 'em posted, I just keep forgetting about them - not a good thing to do as they need to be in by march 21st at the latest.
Perhaps I should also use this blog as a reminder list - I never remember to stick one in phone like I used to.
Feck it - I'm gonna play bejewelled till I crash, it usually helps.

Whoops

Well, today appears to have made up for yesterday *sigh*

Yes the majority of it has been spent lay down, I have a sneaking suspicion its food poisoning though - I should have known not to use those berlotti beans, only a few days out of date but *shrugs*

Woke up at around 10.30ish again (at last! a pattern?) PAIN all over, I figured that was just a healthy burn from all the excersize I did yesterday though - Till I tried to get up.
MAN!
dizziness, nausea - lying back down didn't help because the room started spinning, tried to get back to sleep but failed miserably - the most that happened was another of those semi-dreaming states I get sometimes when I'm too awake to sleep but too exhausted to get up - except I didn't feel tired for a change. Just ill.

After several hours of this I lurched downstairs and got a drink, 2 pints of cordial later and I felt a little better - could actually swallow and my throat didn't feel so sore. Still burning up though and my lack of balance has not improved any.
Not feeling so sick now, though a slight nauseousness is still there. I feel like I'm going to the loo every 5 minutes with a few drinks to top up my system in between.
Perhaps forcing myself to move around isn't the best plan but I am too thirsty to care, and since for once I can move whilst feeling this shit - I'm doing so.

Right my eyesight is going again so I'm heading back down to my impromptu bed on the couch - I refuse to get into my actual bed until a reasonable bed time - I spend far too much time in it as it is! At least by camping out downstairs I can pretend I'm 'up'.

Something new

I've just recieved a shedload of bumph from Caroline at the Bury M.E. support group - and I do mean a shedload - it'll take me a while to wade through this little lot, but what I've scanned so far looks good.

I've also decided that since I'm crap at keeping a written diary of symptoms etc - instead of just whinging on here I'll keep an account of day to day stuff, symptoms, activities etc etc - lets see if any kind of pattern emerges.

(and it gives me an excuse to keep coming online lol)

So... today:

Up at 10.30, usual body aches but no headache (hurrah!) actually hungry, feel like I have enough energy to tackle the kitchen and go for a walk (woohoo!)

Will add more later - I'll even keep a record of how many steps I take each day seeing as my walkers pedometer finally arrived (I'm such a sucker for free stuff)

Update:
After a filling meal of beans on toast and a cup of chinese tea, I walked to the Asda and back (3hr round trip) I felt quite ill when I got back - my leg still aches, but I'm also still wide awake at gone midnight - even despite messing about the house all night, I've barely sat down.
While that's good today - I'm dreading the knock on effect over the next few days - ah well... Best not to borrow trouble eh?!
Made a very tasty vegetable and bean soup - still got nearly a full pan left, methinks I'll be feeding well tomorrow, I've also got another carton of cherry tomatos, I think perhaps I should have got more - I eat 'em like candy!

...Oh and my pedometer count is 101144 today.
Lets see how often I can beat that! (till the battery dies anyhow)
Now I need to try and sleep. *sigh* wish me luck!

Comic Relief

The good news is that today I've finally recieved the written confirmation I need from Barclays to put forward my claim for incapacity, sadly it's about 3 weeks later than I needed but fingers crossed it all gets sorted before mums wedding at the end of April.
If it does then I can still go to Spain to see Trish and Angie for my birthday and just take a break from everything.
I need a break - for real.

It's all just getting to me so much, I nearly broke up with Stef on Tuesday.
It was like the icing on the cake, I'd told him all the crap I've been getting from mum and Sean, I'd filled him in on the money situation - not much of a response...
All I really wanted was a hug and a sincere "Don't worry, it'll get sorted"

Fair enough, things do sound less stressfull and fairly petty when I try and verbally explain what's bothering me, but then he started bitching at me to do this that and the other - no sympathy no empathy - just orders.
I know he's the kind of person who expects action not whinging, I'm pretty much the same - but at least I know that sometimes people need to get things off their chest! If you are offering suggestions then at least make it sound like suggestions instead of laying down the law - and a hug is always a good thing.

It started when I was trying to fill in the benefit claim forms, he got very terse with me so I told him to stop shouting at me. He then went into the kitchen and left me to it.
We were getting ready to leave the house when I tried explaining how this illness makes me feel - how I hate it and that all this stress just makes it worse - he told me to shut up, apparantly it gets very boring listening to someone whinge all the time.

Excuse me?!
Thanks for the support and understanding there. Nice to know I'm not all alone with this. Half of the reason I'd started my explanation is because I feel as though he thinks I'm making most of it up - I just wanted a little reassurance from him.

I think that's the root of a lot of my insecurities with this - I feel like a hypochondriac so how can I expect other people not to see me in that light?
It's awful, I'm lucky in that I can still do some things - I've read and heard about people that can't get out of bed at all because of this. But because I can do some things, I look 'normal' to people, how do you explain to them how it feels? The sheer effort involved in doing those things - mentally as well as physically.

Every day you wake up and mentally push at the fog around you - testing the boundaries to see if you can get up and do something constructive today - you know it's not happening if you don't even have the 'energy' to do that.
Your limbs are too heavey to move and it's like you don't care, everything is just too hard and so what.

But that kind of explanation just gets a response of "So? I have days like that, you just get on with it and stop being so lazy - fight it"

If only it were that simple - it's not. I can't explain it for my own satisfaction - how the hell can I explain it to other people? The lack of decent information on this illness just makes everything that much harder - especially if you can't stay concentrated on the task long enough to do any in depth research on it.

Ah well...

I forgot that I recieved a letter from the physio department of my hospital last week, I need to call them on monday.
They want me to take part in "a research study investigating what factors contribute to an individual's level of chronic fatigue and/ or pain."
Hopefully this means I'm about to start some form of treatment - fingers crossed it works.
I've had to stop taking the pills as I can't afford any more at present, on the plus side at least now I'll know if they've been having any kind of effect...

HELP!!!

J can finally stop whinging at me.
I've spent the better part of today searching fruitlessly online for an ME/ CFS/ PVFS support group or helpline number.
Nary a one to be found in my area - and by my area I mean the city of Manchester. It would appear that I am obviously the only M.E sufferer in our teeming metropolis. So much for getting some help with the benefits forms *sigh*
I've emailed a few places and posted requests on a couple of forums but I'm not really holding out much hope on the subject. In the meantime I'm attempting to answer some of the 'questions' on these forms.
Perhaps I should move to Bury or Tameside - they both appear to have extremely active support groups. I just hope one of 'em is willing to try and help me out.

Depressed, need I say more?

Things have really started going to shit.
Work have stopped paying me, they didn't even give me any warning! My boss actually rang me to check up on how I was doing the day before I found out - HR have yet to inform him that I'm no longer on the books with them.
It's taken 2 weeks of none payment for me to discover I am now basically penniless, no wait - Less than penniless - I still have a loan to somehow pay and a £1350 overdraft. Joy.
I can't fill in the dla or incapacity forms because they are not structured for a chronic fluctuating illness, untill I get them filled out, I'll have no money - and if I don't fill them out correctly then they'll reject my claim and I'll still have no money.
My standing order for the rent was returned so on top of owing rent this month I'm now going to have bank charges, this means I am finally at the limit of my overdraft and they won't let me extend it.
I can't go out and buy any more food in... Things are looking bad.

I've tried finding an M.E support group or an advice centre, but the only ones near me are in Bury or Tintwhistle - neither of which are in Manchester itself.
I have enough problems getting to my mums on public transport and I know my way round there! I'm all alone here, my housemate has a drinking problem and is suicidal and everyone who would like to help me can't because they are too far away and in a similar financial position themselves.
How am I supposed to sort this out by myself?!

Every website I can find lists advice centres or support groups everywhere but Manchester itself - it's a fucking city for crying out loud! You are not telling me that I am the only person in here dealing with this fucker!
I know I'm not because my mum has it too, my dr has at least 3 other patients with it - he's told me about them.
I wonder if he'd be willing to give me a contact no. for one of them to see if they can help me..? I know I'm screwed otherwise, if only there were a way of getting help online or over the phone, sadly every resource I've found asks you to make an appointment and I can't get there without help.

I can't go out, I get dizzy, panicky - I'm paranoid as fuck about having a 'turn' when I'm on my own - These days I don't go anywhere alone unless I know I'm being met at the other end.
When we do go out it's always somewhere within easy travelling distance to home.
Anyway, even if I could get there I now can't afford the bus fare.
Perhaps I should just give up, I just don't have the energy for all this, stress makes it worse and with all the shit I have to deal with in the form of Sean, mum and money - quite frankly I'm at breaking point.

What to do?!

I'm really confused right now.
My Dr has just managed to make me all suspicious of Ben (the lovely acupuncturist I've been recieving treatment from) He didn't come right out and say that he thinks he may be conning me, but he danced around the issue enough that it's put all sorts of thoughts in my head.

Now it could just be a western medical practitioners mistrust of an unknown.
Or not...
His main concern was not that I'd taken it upon myself to seek this kind of treatment, but that the practitioner in question has also supplied me with these pills that he has no knowledge of.
As far as he can see I'm ok to continue taking them - he stated that I would be unlikely to recieve anything that could do me harm.

The thing is, I'm skint - totally. Acupuncture costs a fair bit, the pills are doled out in an amount suitable for only 24 days and they cost quite a bit too (considering my financial situation) So even though the last couple of days I've been feeling much better - it could be attributed to any number of things besides the acupuncture and herbal remedies.

A thing he was quick to point out.

And he's right. I've also been taking the Dothiepin for a month now so that should be kicking in which could be what's helping me sleep. My diet has changed, I've been steering clear of caffiene and dairy products, I've been drinking twice as much water as usual and I've been forcing myself to do things instead of just (literally) taking it lying down.

His suggestion is to keep taking the pills as I've paid for them now, continue the treatment if I want to (he has another patient who has acupuncture via the hospital and it apparantly helps her) but if after 4 or 5 treatments I see no real improvement, stop wasting my money and look at other alternatives.
And if these don't work or I don't buy any more when they run out and Ben starts urging me to try alternative herbal supplements, I'm to inform him straight away.
Which sux.
I came out feeling as though I'm really stupid. Like once again I've allowed someone to take advantage of me. It wasn't just what he said, it was the pity and disgust on his face when I started telling him about the acupuncture and pills.
I hate feeling like a complete idiot.
It feels even worse because I like Ben, he's a really nice guy - except now there's a little voice in the back of my head saying "yup all good salesmen are nice guys, even if they don't have a clue what they're talking about"

I can't help thinking of Polly (AKA Pondscum) lovely guy, heart's in the right place - can sell anything to anyone. He used to work in a computer store - knew less about Pc's then me. His sales record was 100% though.
I used to watch him in amazement - he'd be blagging this poor family and even when they brought it back as unsuitable for their needs - they still asked for him and he'd sell them something else! Usually for twice as much as the first thing.

So you can understand why I'm confused - and a little worried.
I don't want this to be a temporary 'fix' I've had one sleepy fit in 3 days - and that's despite cleaning the house from top to bottom, cooking full meals and taking trips into town, something I've had problems doing for months.
But I also don't want to be dependant on tablets or expensive treatment because I really can't afford it.
*sigh*
Feck it - I'd best get this dinner on the go, my beloved is going to be setting off soon and I want everything to be done when he gets here.
Valentines eh?! Whoda thunk it...

Doing something positive

After a bit of nagging from a certain someone I can see that I've been going about this sleep thing all wrong.
Since the only thing I have any real control over is the time I set my alarm for in a morning, that's what I'm going to do.
Yesterday I was up and feeding at 7.30 (As both mum, Stef, Claire, Am, Sean etc etc ad nauseum, can vouch - I'm soooooooo not a morning person. This is gonna hurt for a while) today I was up at 8, me no likee.
Ben (acupunture guy) has given me some herbal stuff to take (in addition to the Dothiepin, supplements, painkillers and pill I already take) so in total that's 15 different tablets I take every day plus however many painkillers I need that specific day.
Did I mention I hate taking tablets?

I do feel brighter today though so hopefully that means the acupuncture is taking effect - I guess it's too early to tell in reality, but my fingers are crossed and I'm going to head into town with Sean shortly to get some shopping and go see people.

I've had to make an appointment for monday with the Dr. as my sick note ran out yesterday and I hadn't realised till work called asking for the new one, I also recieved my Incapacity and DLA forms (disability living allowance) and I'm trying to get an appointment with the local rep so she can help me fill it out as it's a bit of a bugger. So while nothing of any real interest is happening to me this week, I'm at least doing something.

Gah!

I can't think.
I want to blog - I've been sitting here for over 10 minutes staring at the screen, I had a shitload of stuff to rant on - not the least being this BASTARD of a headache that WON'T LEAVE!

Lets just say it's been a bad day.
My mind is all over the place, I've watched the whole of Dark Angel season 2 and most of SG-1 season 3, turned on the tv and watched charmed and Splash! but I'm feeling restless, I'm too whacked to do anything, I hurt and most of all:
I HATE THIS!

I feel like all I've done for the last couple of days is whine about feeling crappy.
I thought acupuncture was supposed to help?!?!

Yes, I feel shitty.
Again.

I need to call J back in a bit since I just ended up crying at her down the phone so now she's going to be all concerned - not my plan at all.
I just can't help it - my little moan the other day must have been prophetic - or maybe I just realised subconsciously that all the signs were in place for a bad 'un.
It doesn't help that it's the hormonal week anyway. Even now - all I'm doing is typing and the tears are starting, my throat is closing up etc etc etc

It doesn't matter how I try and tell myself there's nothing wrong with me, I still cry - this is my 3rd attempt at blogging because I get caught in this fucking CRAP self pitying loop.
This is why I originally had a personal blog - so I could spill this kind of verbal excrement where no-one can see.
But you know what?
I don't care anymore.

I've always - my whole life - managed to handle things by shoving it to the back of my mind, it's like I have a dark room in there where I can pack the bad shit up and chuck it down a very deep well.
Just lately it feels like that well has overflowed and all those little packages are coming undone.

I'm having nightmares about shit that happened years ago. I'm crying about crap my EX said or did and that relationship ended over 3 years ago.
I wish I could just blame PMS, that would make things so much simpler.
Most of all I wish it would just stop.

Roll on tomorrow. It'll be better then.

My first acupuncture appointment

Having M.E. sucks great big hairy donkey bollocks!

I do make a conscious effort not to moan about it in general - to anyone. If I'm honest I try really hard not to even think about it.
But I've had a long chat about it today and so many things are buzzing around in my mind I need to put it down somewhere, I've kinda lost track of my blog being that place the last few days - weeks even, I get so engrossed in the lives of others that I've not had to really think about mine, except in a general way.
So today, this is all about me.
I always write on the fly so I hope it doesn't turn too maudlin even if it is a whinge, but this is in lieu of someone being here to talk with about it all.
I can't talk to anyone about it really, I get too upset and give up trying to explain myself - even when I think its important.

Basically this thing has taken over my life. I've gone from being the kind of person who's always on the go and never stops, to being the kind of person who never even gets close to starting.
To be honest I've gotten to the stage of not wanting to do things because I'm afraid of setting it off.
If I have a bad day - it's a really bad day, by not exerting myself in any way I can avoid bad days.

If I feel even the slightest bit tired, I'll just stay sat on my arse doing nothing - not even the dishes. And I hate it. I hate this weak whingy little piece of useless nothing I'm turning into.
It's frustrating, depressing and at times feels completely hopeless - it's even worse after a couple of good days, when I feel positive and do things normally without even thinking about it, if I have a bad day then it sets me right back for weeks mentally.

I don't like to go out alone anymore, it's not so bad going to a place where I'm meeting up with people, but I won't go to town alone. I can't stand crowds anymore, they stress me out - I used to work as a bouncer in a nightclub environment ffs, crowds never bothered me in the slightest...

This whole thing... It's just rotten, I feel like a complete hypochondriac everytime I mention something aching or such and such a thing isn't 'right' because just lately that's everything. I try and act 'normal' but I hurt all over pretty much constantly - it's usually just a dull ache, a nagging pain that I can put to the back of my mind and 'ignore' but sometimes it flares up in 1 or 2 places, on a bad day it flares up everywhere.

When I'm talking to people it's like there's a slight fog between me and them, I get what they're saying and I can act like a rational person, but I'm not 'myself', I know it - but very few people I hang with these days have known me long enough to see the difference.
On a bad day I couldn't hold a conversation with a goldfish.

Aminatta noticed straight away, but she's known me longer than anyone. ugh... The tales that girl could tell...

Basically, it's a memory thing more than anything else, it plays tricks on me - only little things, but they mount up. For example, I'll go to do something like put the dishes away - then instead, stand there staring at them wondering what it was I intended to do.
It's all stupid petty little things like that but it's in every aspect of my life and they're whittling away at my self-confidence, my ability to be me and just get on with things.

Stef actually said the other day that I shouldn't stop doing things because of this, I should do them anyway and if I have a 'sleepy fit' just go with it.

I'd like to do that, I really would.

But I have a real mental block - I'm almost terrified of bringing one on - it's stupid, I agree with what he said 100% but I can't seem to put it into practice. Instead I just shy away from doing anything - including housework, and then hate myself for being a 'lazy cow'.
I'm just glad he's here to push me and 'bully' me into doing constructive stuff, I may complain and act all hard done by - but I do appreciate the fact that he cares enough to do it.

Talking to Ben (the acupuncture guy) today has helped a bit. I feel a little more positive, I don't know if it's because of the session or because I'm finally doing something constructive myself to combat this - either way it's a good thing.
He seems to think I could have had this longer than the 6 months I've been off work with it, my history of giving up on things is an indication apparently, I've always gone through 'phases' of feeling fed up and tired and it takes me forever to shake off an illness.
At those points I've usually just got a new job or left my course or moved house - this time my physical situation became so bad I needed to seek medical help instead of just blaming it on whatever stresses were in my life at the time and trying to change them.
I'm inclined to agree when looking at it from that perspective, makes me sound better anyhow lol

I think if I can do something to remedy my horrendous financial situation I'll feel even more positive - it's just whenever I start talking about this to anyone I can't help thinking about how it's fucked everything up for me and I get all stressed out and depressed.
I had a large sum in savings and was looking forward to finally buying a place of my own that no bastard ex could take off me, I had a pretty good income, no overdraft and the only debt was one loan - of under £1000.
Now, within just 6 months, I have NO savings and I'm constantly worried I'm going to go past my overdraft limit of £1000 through the financial commitments I made within my previous income - this was especially true when I was trying to sort out housing benefit and the landlord put the rent up... It just sux.

Basically, I came out of the clinic feeling positive and slightly more awake than when I'd gone in, after the horrendous journey home (Swinton to Newton Heath is a pisser of a journey on public transport) I felt like a wrung out dishcloth and more depressed than ever because my house is a shit tip.

I'm now going to have a Dark angel and SG-1 marathon followed by a hot bath and a decent tea.
That should kick the self-pity back into touch, I may even attempt to do some cleaning then - but I doubt it.
Maybe tomorrow...

Dothiepin

I've started my new tablets. Unfortunately it seems I'm going to need to find another way of trying to sleep at night because on first test, they don't do shit for me. After lying staring at the ceiling in the dark concentrating on my breathing, re-arranging the pillows, my sleeping position... Well, after checking the clock and seeing this had been going on for 3 hours I got up.
Still can't concentrate online though so I'm for the Tv.

Bed, Again...

Right, I'm for bed again - I don't know if its a new twist to my being ill, since that damned cold I've been bad again *sigh* though it could be that my monitor is on its way out (good job I have a spare) either way, I can't stay online too long the screen makes me feel nauseous and dizzy and I get headaches - Boo *sniff* means I'm not using messenger either at present so now I have no contact with the outside world, just as well I'm too tired to really care.

Fecked

I'm supposed to be finishing cleaning my house today but I can't settle on anything - I started washing the pots and ended up taking the wheely bin out instead(?) Then I went into the front room to sort the sofa out but moved the chairs from the kitchen to under the stairs instead so I could sweep the kitchen floor, instead of which I took my trainers upstairs and hung my coats up.

Still, at least I'm getting little bits done I guess. My mind is all over the place today and I'm feeling really tired again but I'm forcing myself to keep going.
Ugh, I'm going for another brainless wander around the house, I just can't sit still... I'm so tired! Why can't I settle? This is doing my nut in!

New years day

Woke up aching like a fecker, been totally brain fogged all day with no clue what I'm doing from minute to minute. I've ran the bath twice, moved little bits from one side of my room to the other and back again, watched some crap on the tv and had a sleepy fit.
At some point I will make something proper to eat as I'm guessing that may be a contributing factor to my ditzyness, I'm thinking J may like to feed soon also - you never know lol
As soon as I get a spark of concentration going I shall whip up a feast (ok, it'll be a chuckit - tasty though) in the meantime I shall continue to wander around the house aimlessly listening to the baby monsoon outside.

Feel the frustration

I KEEP DROPPING THINGS!!!

It's starting to piss me off now. At first it was just my phone or some random object I could explain away by cold or slippery hands, but now it seems to be happening all the time (ok, slight exaggeration - but it's very frequent) I'm thinking this flu bug has set me right back to where I was 3 months ago.
I'm getting the whole pins and needles thing everywhere, I've had a constant headache since I came down with it - and I think I can forget about having a decent night out because the sleepy fits have kicked in again.
Yup, I had one when I was at yogi's Christmas day - I ended up just monged in a chair for about an hour. Then last night at the party over the road I dropped a full glass (thankfully plastic) all over the kitchen floor - covered both myself and Colin in orange juice, then not 30 minutes later I had to hightail it out of there (ok, lurch out of there) in order to get home before I 'passed out' again.
This is depressing - not to mention embarrasing.

a lovely new twist

I have developed a new and interesting inability to clean up without breaking things. Cool huh?!
I started to clean up the other day and stopped after dropping 3 plates one after the other - that's also after I managed to throw a small one to the floor when getting something from the cupboard.
Today, I've just broken 3 glasses.
Fantastic.
At least I know what I'm going to be wanting for my birthday mum - you've got until May to help me find a new dinner service - lets make it a plastic one eh!?
Seriously, if I didn't already know there was something wrong with me I'd be begging to know what it is.
Lets just say, from now on all attempts at cleaning will be performed whilst wearing my steelies.
Thank god I bought a brush to go with my new mop and bucket set while I was at IKEA...

Needless to say I have stopped the tears of frustration, come upstairs to soothe my soul with a blog - nothing like feeding an addiction to put things right with the world is there? I'm almost beginning to sympathise with smokers, I'd be climbing the walls without a pc right now.
(but I still refuse the dirty lung killers sway in my house... ugh!...)
I'm guessing its possible the tunes may have something to do with my current level of calmness though, a bit of the old Fleetwood Mac to bring me back to myself, pretty much always a charm in itself.

Think it could also be a touch of the come downs too, was a really good day (and night) yesterday, then I come home to a freezing cold, empty house with a congealed and messy kitchen.
Talk about a contrast.
Right. Guess I'd best go down and clear up that glass while I have the energy, then try and set the rest of it to rights - preferably without dropping anything else.
Or someone could just come round and shoot me - either/ or sounds good to me.
(Oooooooooooohhhh... Can't you just WADE through that self pity...?)

realising reality

Just been to the Dr's.
I'm more than a little gutted right now, on the plus side (thinking positive) I have a prescription for more drugs (::sarcasm:: Noooooooo, really, its a good thing - my chemical intake has been slacking of late ::/sarcasm::) on the downside, he sat and had a long chat with me about this.

Apparently post viral fatigue syndrome - otherwise known as M.E (Myalgic Encephalomyelitis/ Encephalopathy) can take up to 4 years (four fucking years!) to get over - not fully recovered mind, just better.
He was a bit concerned that I seem to have got it into my head that I'll be fine in another 6 months or so, enough to go back straight into full time work anyhow.
He told me about 3 other patients of his who have this, 2 of them are working again (albeit only part time) after at least 2 years on the sick.
One of them must have a very understanding boss is all I can say because he said she can be fine for a couple of days then one day she'll get as far as the bus stop and have to call in sick cos she's too shattered to face the rest of the journey.

I can so relate, I had to cancel my appointment to see him last week because I was too shattered to walk the 10 minutes up the road.

I told him I was thinking of joining a gym - he vigorously vetoed that idea, for several months at least. He suggested I get a dog, being forced to take a short walk every day will help, the key being gentle excersize. (uh huh, like I'm going to voluntarily take on the care and well being of another living thing... I couldn't even keep goldfish alive!)
But I have to force myself to do it - whilst not doing too much.
How do I gauge 'too much' if I'm shattered and lethargic to start with?!

For some reason he kept repeating the fact that it's not my fault... methinks at least one of his other patients has had a 'thing' about that. I know it's not my fault, its just some punishment for being too great *grin* someone up there obviously feels the need to try and keep me down.
Bastards.. Well tough shite, wont work - I shall do this physio etc (as soon as they get to me on the waiting lists) and I will be back as a productive member of society well before 4 years are up - I'll give it the 2. Tops.

For the next 3 months at least I will be on one 25mg capsule of Dothiepin Hydrochloride every night before bed. The lass at the hospital described these to me as anti-depressants (a fact not designed to fill me with joy, I don't consider myself to be depressed, well, not enough to warrant drugs anyway) Basically she said they are so low-level that they mainly get prescribed for the side effects, which is a pain suppressant and helps induce drowsiness - therefore aiding sleep.
The plan being, I get a proper routine sorted and 'train' myself into getting a decent nights sleep, this should in turn help me sort everything else out.
It all mainly comes back to diet and sleep.

Somebody understands!

Just got off the phone to Katie at occupational health, I so wish I'd spoken to her before.
She's had this fatigue syndrome before and she knows what its like for me.
I'd started to get back into the mindset of believing It's all in my mind and that I was just being lazy, which was starting to really depress me and knock my self confidence (to say the least) Lying in bed all day isn't helping.
Having somebody describe to me just how I feel without me saying a word was a kind of relief - I'm not a total hypochondriac, it's not just me - it's a physical and mental 'malaise' that I have no control over.

The fact that she got over it helps, she can see all my notes and she says that while she got over it in 18 months, it may take me a little longer because I appear to have it worse than she did - but at least I've had confirmation there is an end in sight, and once I start this wellness clinic the specialist has referred me too - well, fingers crossed it'll help me get over it even quicker and I can get back to being me again.

It really does make a difference to speak to a person who's been there. She quite vigorously suggested I take a 'convalescence' somewhere warm for a couple of weeks (if I can afford it) as she said doing that was what finally helped her 'turn the corner' and like she says, even if it doesn't work for me - at least I'll have had a nice relaxing holiday. She's also suggested I go swimming once a week (if I can find someone wiling to go with me... Mum...? *grin*) Not to try and do lengths or anything, but just the floating and general light exercise should help.
So, come February and the return of cheap flights - Madrid ho! Already had Trish suggest this to me as a possibility if I wasn't back in work, well - looks like I wont be back in work for another 6 months, this being the case... I'm going to try not to get depressed, shake off the 'I can't' attitude and start to do things.

Hospital Tests

I had a hellish day today.
I can giggle a bit about it now, but at the time...
I left the house at 8am, I was feeling quite crap as I'd made myself stay awake so I would not miss my hospital appointment, one of the problems with this whole 'sleepy' illness thing is I appear to have lost the ability to wake up when an alarm goes off.
I stood at the bus stop in the rain for around 20 minutes enduring the mindless gossip of the group of 11-15yr olds stood smoking and spitting alongside me
I could feel myself turning into the 'disapproving aunt' type, my mouth getting more and more pursed as I saw that the youngest looking boy was in fact smoking a spliff and was handing it around amongst them - obviously using it as his tool to gain kudos amongst his peers.
It was with quite a large amount of relief I watched them all get onto a bus other than the one I was waiting for.

I got to the hospital, only to realise the stop was nowhere near the main entrance, I walked into the building through the nearest entrance and promptly got lost trying to find outpatients B. I finally made it in time for my appointment - not really a problem seeing as I had to wait before a nurse came and took me to be weighed.
The appointment itself was great - The woman I spoke to was both cheerful and understanding - and very thorough!
I was poked, prodded, tapped all over with a rubber mallet thingie and reduced to tears when interrogated about how this has affected my life, she then wrote everything up - assured me that while it looked very likely I had post-viral fatigue syndrome, it was unlikely to be chronic as there were many things we could start doing now (depending on the waiting lists) I do NOT have fibromyalgia as previously suspected (YEY!) and she would be sending a full report to my doctor regarding treatment and recommendations.
That has to be the most thorough and informative non invasive check up I've ever had.
Then I got packed off with a tissue and a smile to have some blood taken for tests.

I got downstairs to Outpatients A, was directed to a box on the wall where I took No.89 and sat down with my book to wait to be called (it was hot and very busy and the nurses looked far too overworked and harassed to be as nice as they were)
My number finally got called after about an hour or so, I went into the room sat down and watched with mounting horror as she started piling up the plastic receptacles for my blood.
after she'd selected about 6 and was still going I rather tremulously asked if I really had to fill all of them - she looked at me over the rim of her glasses and pointed at the 4 cards I'd been given to show her "that's what they've asked for" she said.

I at this point began to feel a little sick.

As is the same for most people - needles scare me, I've had so much blood taken in recent years though that I no longer whimper and cry at the sight of 'em - but it's a close run thing each time.
I sat there gathering my courage together and steadfastly looked away from her continually growing pile and tried to think soothing thoughts whilst regulating my breathing.
She finally looked at me properly and noticed my distress, was very kind and tried distracting my attention by talking to me as she inserted the tap.
After about the 4th one started drawing, I could feel my gorge rising - again I attempted the soothing thoughts and breathing technique, but by the 8th or 9th I was dry heaving as she hurriedly tried to finish off before I passed out.

As she was on the last one - after reassuring me that "this one's only a little one, soon be over now" Some jerk started calling for her attention asking why he had to wait as he had to be somewhere else etc etc etc - I was there feeling as though my life was being drained away - obviously unwell, and this WANKER was trying to draw her attention away and therefore prolong my suffering, thankfully she sent him off with a flea in his ear and took out the tap whilst I sagged weakly back into the chair - she grabbed me just as I felt my eyes roll up and I fell forwards onto her lap.
A second or so later, resting my head between my legs and coaching my breathing, I could hear the concern in her voice as she commented on my total loss of colour, someone else curtained off the area I was in and a Dr arrived with a male nurse, they transferred me from the chair to a trolley - someone else got a fan from somewhere and I had water pressed upon me with an order to drink.

By this point I was so embarrassed and I couldn't stop the tears - which embarrassed me even more.
I just kept apologising for taking up the space when they were so busy and getting told not to worry about it, just rest easy for a bit, after about 10-15 minutes I was able to make myself sit up and actually drink the water they'd given me, but I couldn't use my right arm as it had gone totally numb, to make the embarrassment just that little worse, I had to also go and get a urine sample when she pronounced my 'colour' better, the nurse watched my bags etc as I lurched out to the toilet, people swiftly moving out of my way as though I were carrying some awful disease - When I saw my reflection It shocked the hell out of me.

If this was me with better colour - what the hell had I gone like before it returned?! I kid you not - I truly looked vampiric - all I needed was the teeth and a small dribble of blood from my mouth to complete the look. Because of the crying my eyes were glowing red, my lips were red through being bitten nervously and my skin was the kind of chalk white you only see on a dedicated goth.

I finished my business, went back to the nurses station, retrieved my bag and lurched through to the cafe still feeling as though I were going to throw up or pass out or both. All that was in my mind was the need to get out of there. In hindsight I should have just stayed longer, lay down and waited without embarrassment. But - hey, I'm not the most sensible of people on occasion.

I stood looking at the remnants of their stock at the cafe, trying to make some kind of decision as to which would help me the most quickly without throwing my reflux motion back into action. I grabbed a ginger slice and waited at the counter, virtually unable to stand while the woman at the till (no doubt a lovely person) took forever to serve the 2 people in front of me.

I must have looked about as bad as I felt as the other lady behind the counter had been eyeing me with some concern, whilst the lass at the till faffed her way through the other orders, she asked if I wanted a drink - told me to go and sit down and she brought my things to me and took the money at the table.
Very gratefully, I sat consciously controlling my breathing and sipping my tea, looked at the clock and realised that I'd only been at the hospital for 3 1/2 hours. After about another hour of this, I still felt like shit but figured the sooner I got home the sooner I could actually pass out. I even felt rough enough to go through my phone in an attempt to think of someone who could come and get me. Why do most of my friends not drive? *sigh*
I got out to the bus stop and managed to embarrass myself further, about a dozen messages came through from J so I called her, the second she asked how I was - yup, tears. Again.

Bless 'er, she handled my almost hysteria quite well.
I walked away from the crowded stop and the prying eyes to a quiet side of the building and squatted against the wall as I told her about my 'ordeal', she understood that I'd be in no fit state to go for the meal we'd planned and managed to jolly me back up into an almost goodwill state again.
I went back to the stop caught the bus and spent the entire journey almost rocking back and forth in an attempt to stay focused - telling myself I was nearly home.
I finally got home at 1.30pm and literally crashed on my bed fully clothed.

I woke up at 6.30pm to a phone call from my mum wanting to know how it had gone (she'd also been to the hospital today - she has to go back for a mamogram as they've found a lump which is a little worrying) I told her about it, she told me to go get some food, a sentiment echoed by both my gran and S when I spoke to them not long after. So I rang the chinese on the corner of my street, ordered a lemon chicken with fried rice, made a cup of tea and went out to collect my food.
I managed about a quarter of it along with an episode of the Simpsons and the west wing before I had to go back to bed. I'm now awake again - still feel like crap, but at least after the bath I have running and another cuppa I should feel a bit more human.
I'm now also able to think back to today - yes I'm embarrassed about it (no reason, I just am) but at least I can laugh now. It's good when the tears can be controlled eh?!

Just a word to the wise - unless they tell you otherwise, always eat before a hospital appointment, it makes giving blood that little bit easier on the system.