Monday, December 27, 2004

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...?)

Friday, December 17, 2004

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.

Monday, December 06, 2004

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.

Sunday, December 05, 2004

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.

Friday, November 26, 2004

Instead of whinging on my main blog...

Well... Awake again, no real surprise there - seems I'm reverting back to the whole broken sleep patterns I had at the start of this illness, I'll 'sleep' for 2-3 hours then be wide awake for a couple oh hours, then I'll feel ill and need to crash... You get the picture.
*sigh*
I wouldn't mind but it seemed like things were improving. I'd had no really nasty headaches for ages - right up until my disastrous asda trip, the achyness appeared to have subsided - without me using painkillers (this kicked back in about 2 days ago) and the 'sleepy fits' had dropped down to around once a fortnightish. (Had a bad 1 today, lasted about 3hrs, joy.)
I just don't understand what's going on. Why is it taking so goddamned long for me to get an appointment with this 'specialist'?
I also had another call off work this morning so I'm starting to get a little stressed... Hmmmmmm... Maybe that's what it is. I know at the back of my mind there is a very worrying nag about the dwindling resources of my bank account, Christmas coming up has only managed to add to that as I know I'll be expected to add to the pile of presents in various houses (see, some gifts I quite like to buy, others I really begrudge.. But you cant buy one without the other can ya *sniff*)
I'm sat here sipping some chamomile tea wishing I could get back to sleep, I have to be up quite early so I can visit an old friend tomorrow/ today...
*sigh*
and there's no one about for me to whinge at either (which is why I'm getting all maudlin on the blog)
I just wish sick pay was scaled so that all outgoings were covered instead of some figmentary 'all you need to get by' amount as dictated by our government (ah, key word - government - literal translation: body of people who live completely out of touch with the persons they represent, charged with running the country.)
and that's as political as I get.
ugh, I feel like a train wreck.
If only I had alcohol to blame.

(update)
Even after sleeping most of the day at mothers, I still feel like crap so no happy joy joy post, I'm gonna drown myself in a hot bath, if that doesn't work, peppermint tea and back to bed.
But at least my appointment has come through, good timing eh?
Friday 3rd December 9.30am.
lets hope I'm able to walk, unlike this morning when my joints all decided to fuse into painful lumps of uselessness *sob* just shoot me.
and I still feel sick.