Tuesday, March 29, 2005

Mouth ulcers must DIE!

yup, it's harvest moon again and the mouth ulcers have returned. My hand appears to be back to normal though - which is good.

Stef came over around 4am as I was still awake - I'm just too unsettled here now ever since Daves car got pinched from our drive on saturday.
All last night I kept hearing noises that sounded like someone else was in the house - normally it wouldn't bother me as I'd put it down to Sean or next door, but Sean wasn't here and every sound just made the hair on the back of my neck crawl - I must have checked the doors and windows around 30 times all told. *sigh*

But the upshot of it all was, between the pain from my throat and mouth and my wound up paranoia - no sleep. Even when Stef got here and we slept through til 12pm I woke up feeling as though I'd not slept at all, he wouldn't let me stay in bed though - the tyrant.
So I had a bath and just monged in front of the TV till he went to football, then Sean came in and now I'm heading to bed, the aches and headache are just totally eclipsed by the whole throat/ mouth thing - I can barely swallow and I'm really not that interested in eating anything.
Just feel crap *sniff* Pass the Anbesol eh?!
I can't even concentrate on a book! This sux.

Monday, March 28, 2005

up 'n' down days

To recap - friday - bit ick, saturday - very ick - had quite a bad 'turn' ended up being carried upstairs by Sean, shame I crashed though - I may have heard whatever wanker stole his mates car from our drive if I hadn't... *sigh*
Sunday went to the paternal home for feeding. Was actually good - managed to play scrabble, despite flickering mental clarity and a banging headache - did kind of 'go' towards the end of the game though, quite embarrasing - pins and needles 'itchy bones' and total lead limbs, had to crash on the sofa as I couldn't make it upstairs - went very cold too - my throat has been incredibly sore ever since.
Been off and on weak and 'normal' all day today, doing the alternate hour of walking about the house and the next hour just monged on the couch thing.
Something new though - can't use my left hand properly - not only is it incredibly weak, it actually hurts to lift things, couldn't unscrew any jars or bottles or anything since yesterday - hopefully this'll go soon, just glad I have many fruit tea's in lol shame I also seem to have another bout of mouth ulcers, my most fave thing in the world...

Saturday, March 26, 2005

Chocolate and alcohol are NOT good for you

Easter is great - you get 'eggs' and usually a new mug or 2 to add to the growing collection in your cupboards. Sadly chocolate and nausea do not mix very well...
Stayed at mums right through to 7.30 last night (she feeds me it's great) after around 4hrs sleep I let Stef out then went back to bed, sadly mum heard him leave and as always came out in a talkative mood. I finally got back to sleep again around 10.30ish, woke up again at 12 to find mum and dave sat on the other sofa - very unnerving!
Sadly had the whole 'nausea' thing going on too - as well as the weepy thing, watched 'the railway children' with her and ended up howling.
Joy.
Felt like dogcrap all the way into town to meet up with dad, My leg is still sore and all I wanted to do was pass out or throw up.
He had a drink waiting for me - I felt so guilty for not being able to drink it. Borrowed some money off him to see me through to the end of this month listened to one of Scottys jokes, made my excuses and then somehow made it home - literally limped upstairs and fell into bed.
Now I still have a headache, feel sick - I'm also incredibly thirsty again (which probably explains the headache) so I'm getting a drink and heading back to bed. I'm burning up and I hurt ALL over. If I wasn't so used to this feeling now I'd swear I was pregnant!
*sob* much self pity going on here right now.
I'm also pissed off because at some point later I'm going to have to try to sort the front room out because SEAN has guests this evening - they're planning on getting trashed. Again.
I'm getting a little bit sick of playing maid for him, he does nothing around the house, most of the time it looks like a warzone so when I feel up to it I blitz the place - which then sets me right back for the next few days.
*sigh*
Roll on hearing from Swinton council. At least then I won't have to watch him drink himself to an early grave or listen to anymore suicide threats.

Thursday, March 24, 2005

Prescriptions and symptoms

Ok, I finally got around to writing a summation of my symptoms - this is the list up to today - who knows what next week will bring though lol

Main symptoms
  • Overwhelming and persistant fatigue
  • Feeling generally unwell, mainly sore throat and cold symptoms
  • Poor temperature control, skipping between too hot and too cold
  • Blurred vision, occasional loss of sight for several seconds at a time
  • Difficulties with balance, vertigo and dizziness
  • Headaches/ migraines
  • Numbness/ tingling/ pins and needles in my hands
  • Constant 'achyness' ranging from a dull 'background' all over aches to a sharp insistant localised pain
  • Sleep difficulties
  • Hearing problems
  • Concentration difficulties/ memory problems/ communication problems/ head 'fog'
  • More sensitivity to things like noise, though moreso with light and odours
  • Walking can be painful, sometimes impossible
  • stomach problems - acid/ wind etc
  • Bouts of uncontrollable crying
Occasional/ more recent symptoms
  • Constant thirst
  • shakiness
  • muscle 'jumping'
  • nausea
  • apetite comes and goes
  • alternate craving for sweet and salty foodstuffs
  • asthma playing up
  • strength comes and goes (sometimes cant even lift the kettle)
  • keep dropping things
  • constant trips to the toilet
  • slight agoraphobia
  • Eczma like rash/ itchiness/ very sensitive skin
Took this list to the Dr, he then went through all my blood test results with me and explained that all physical problems that would normally cause all this had been ruled out (lets face it, I did have pretty much every blood test under the sun) so while he can proscribe things to help with the asthma as well as muscle relaxants and painkillers, I need to stop worrying that I've developed something else (boy did I feel like a hypochondriac when he said that)
At least he didn't laugh at me. My Dr is ACE!

He also had a bit of a go at me for not going to see him sooner about my financial difficulties as he would have written me a letter to the dss etc etc. In future I'm to go to him immediately if I find myself in the same situation - the thought just never occured to me, you see a Dr for physical ailments not financial problems!
Anyway, I've been ordered to go to the Dss and make them "either give me some money or at the very least a letter that says I have no need to pay for my prescriptions as it is essential I have this medication."
I felt all loved when I came out lol

ok, prescriptions:
  • Novolizer Budesonide inhalation cartridge + device 200 micrograms/ dose, 100 doses
  • Salbutamol cfc-freeinhaler 100 micrograms/ puff
  • Diclofenac sodium E/C tablets 50mg, 1 three times a day
  • Dothiepin Hydrochloride 25mg, 1 at night.
All this comes to the grand total of £25.60, being ill is not cheap m'loves.
I just love the fact that I need the painkillers but as they exacerbate my asthma I'm also having to get all this extra puffage - the new inhaler looks funky though - he demonstrated one for me, all bells and whistles - it has a dose counter, it also makes a noise and has a colour band that flicks from green to red to show you've taken the dose properly, big brother comes to asthmaville LOL I daren't not use it as stated, he'll know.

Sean had to come with me to the Dr's though - I could barely walk this morning, my left leg is fuct, I don't know what I've done to it but *shrugs* it'll work itself out.
Also spoke to mum today - it turns out she hasn't got cfs, but she probably has MS, they're doing the tests on her now to confirm it. If she has, that sux even greater donkey bollocks than this. still at least she can finally do the bird at various family members and tell 'em get ta fuck ya bastards.

Right, I am absolutely shattered so I'm heading for a bit of a 'nap' - I know I shouldn't but I'll be no good to anyone later if I don't, and I need to win this karaoke comp tonight otherwise I'll be buying no food in for the next few weeks.
That and mum has a sausage casserole with my name on it awaiting some attention...

the mansion

Went up to Sean's gaff today (ok so technically it's the parental place, but its still classed officially as his home) we went there to abuse the facilities and eat their food.

This was good, I actually ate 2 proper meals (one of fish no less) and we had a swim in the pool. Well Sean had a swim, I did a few strokes then floated around on the big rubber mat til he flipped me off it.
Me no likee the chlorine thing, had to get out because my throat burned! my eyes are still sore around 5 hours later, which is why I am not yet sleeping. I've gargled with asprin as per the beloveds orders (men!) and i'm just doing my daily symptom run up before i crash.

slightly head fogged, bluury eyedness, pins and needles, slight nausea and the promise of a blinding headache were there to ruin my afternoon, a couple of ibruprofen later, headache gone, stomach turned to a raging ball of acid though - did nothing to ease the nausea.
just sat and chilled for an hour or so drinking water by what felt like the bucket load. had food, and hour later did the swim thing.

Too achey to swim properly, though floating in that lovely warm water helped a little. my left leg decided to not co-operate though so a present I'm limping badly, possibly pulled or strained something.
Still acidy and shakey but actually tired so now i'm gonna crash, dr's app in the morning dontcha know.
He's gonna love me. i'm planning on writing up a list of my symptoms so far as they appear on my blog - try and get a kind of time line going if poss, then let him know that he may be contacted by the benefits people (probably the fave part of his job that one!) see if there is anything he can suggets other than pills for the pain etc seeing as I have no money for prescriptions etc at present.
and I need to discover a decent antacid, this burning is driving me NUTS! As is the rash - I think IT didn't approve of the chlorine either *sigh*
Lets hope I can sleep despite it.

Tuesday, March 22, 2005

MORE forms. *sigh*

I was warned...
They previously sent me the wrong incapacity benefit forms, which figures...
I found out when I went in on Thursday to see about a crisis loan (have I already blogged this? gah! My memory sux) ok, whatever - I got these new ones on Friday but I've been really pants the last few days which is why I'm trying to fill them out today.
I hadn't realised what a mess my paperwork was in - can I find anything? Can I buggary! So fingers crossed they accept what I've written, pass me the cash and I can then concentrate on this 'pacing' (it involves calm and patience - 2 qualities I am not renowned for...) and after todays physio assessment at the hospital I've signed up for the 'energy for life' program.
This consists of 5 consecutive Tuesdays of whinging with at least 8 other cfs sufferers in a classroom environment before undertaking some 'light circuit training' (Exercise... Not worried about that in the slightest...) The 'research study' is just some questionaires spaced out over the next 6 months so I'm not too fussed about that.

Stef and I cleaned the house yesterday (ok, Stef did most of it but it's still a lot more sparkly looking, even if I do still have the sofa covers to do) The last few days he's been really ace, I don't know what's changed - whether he's actually realised I'm not faking for an easier life or whether I was really just being too hyper critical (who? me?!) about how he's reacted to it previously - either way, I've felt more chilled with him around again which has helped me calm down a bit.
Sadly that hasn't helped with the aches 'n' stuff, but fingers crossed this physio thing does something.
Even more to the point - fingers crossed my benefits get sorted before mum's wedding I used the last of my cash doing the shopping on friday with Stef, I have just enough food in now to last me 2-3 weeks - nothing fresh sadly, but at least it's fairly nutricious stuff.
I'd best go finish filling out the darned forms before my eyes go again.

Saturday, March 19, 2005

tum-te-tum

Yesterday, um...
lets forget about yesterday eh? It' didn't happen, I stayed in bed, got up, fell over, went back to bed, got up, fell over ad nauseum. Just about managed a trip round Asda with Stef at 8ish but felt really sick/ queasy when we left - don't really want to remember much else because it was a rotten day for me.

Today - woke up feeling once again as if the guy with the sledge hammer had been round. Still Thirsty and shaky, pins and needles are back in full force it seems - the last few days they've just not left, I was also shaking so much yesterday that I couldn't eat with my fork till I had it under control and I had to pick up my glass with both hands and really concentrate on not dropping it.
At least I've not had the muscle jumping for a while though - that's awful - not in a painful way, but it's very disturbing feeling the muscles in your hand 'jump' constantly for several hours and nothing you can do stops it.

I slept in again today - but I needed it, woke up again around 12 feeling so much better than I have in days - the aches I'd had earlier have lifted (possibly something to do with the painkiller Stef brought me earlier) It's glorious outside so when I've had a bath I'm going to attempt a nice gentle stroll up to the park - I'm pretty sure Stef won't mind, at least I know he'll look after me if it proves to be a bit much - but I reckon I'll be able to handle it today.
The fog seems to have lifted too, I'm not having to concentrate so hard on trying to 'hear' and understand what he's saying.

I think that's one of the worst things with this, I've always been mentally 'quick' now I just feel so stupid all the time - last night is a great example - I'd decided to bake a cake in the microwave - the room filling with black smoke because I'd left it in too long in an inappropriate container...
I've never been that stupid!
Ah well, onwards and upwards - I'll just have to try harder is all.

Thursday, March 17, 2005

It's a real pea souper

Yup, fog day - I'm just tired, my limbs are heavy and I feel like I'm forcing through treacle to do anything.
I'm also having a gobble-de-gook phase, really having to concentrate on whats said so I can understand it, Stef just took the piss because I misunderstood something he said, actually - it's not that I misunderstood him - I literally couldn't understand, it's like he was talking a foreign language.
Just won't bother mentioning anything - after wouldn't want to 'annoy' him by 'whinging' again

Asthma is playing up again.
was up at 8.30 had bath, can't really remember what else i did today - oh yeah, was eating porridge when Stef got here so I made food. Just trying to avoid going to bed or sleeping, have to go to the shop and get some food but don't have the energy so I'll wait til Stef gets back and see if he'll take me.
Need to wash up but I'm having problems lifting the kettle and the hot tap still hasnt been fixed, will txt landlord again when I can remember where I put my phone. three major dizzy spells and counting - and I keep bumping into things and tripping over my own feet Tra la la - par for the course.
music is good.

Wednesday, March 16, 2005

Yet another shit day... dum de dum de dum

Couldn't really sleep last night - just couldn't settle, skin was too sensitive I was just hot and itchy and the duvet was irritating me.
Finally dropped off, woke up by a call from mum. Dragged my sorry ass out of bed had a bath (zombie stylee) got sean up then we went to meet mum in town.
She was late for a change so we stopped by starbucks - I had a strawberry frappachino and muffin (way to go on the cutting out dairy products lol) then went to meet her when her bus got in.

After about 30 minutes of wandering around the shops I was starting to not feel 'with it' I just put it down to needing the loo and a drink, the feeling didn't go away and I started getting snappy.
I really tried not to.
The fact that I hate clothes shopping anyhow didn't really help matters though, so instead of realising that I was feeling out of sorts, mum put it down to me getting depressed because we couldn't find anything. It's not true, I was just feeling really lousy and just wanted to get home and lie down, so after a slight scene which left me walking up King street in tears followed by an awkwardly sympathetic housemate.

We finally made it home and for the second day in a row I ended up falling onto the sofa and literally crashing in seconds. Woke up with a stinking headache (which I'm putting down to the stress and tears) and had to literally crawl upstairs to go to the loo because my legs weren't working. Coming back down was easier.
Sean had thankfully placed a drink on the coffee table for me for when I woke up so I just had a drink and went back to sleep.
When I woke up again the headache had eased somewhat but the body aches were back full force - moving hurt. A lot.
I made myself get up, grabbed the last 2 painkillers (reminder, get some more tomorrow) switched on the TV and had some toast, sean then made me some proper food and I just 'rested' for a while in front of the box, waiting for the painkillers to kick in.
I'm now 'up' still tired, dull headache, legs hurt - especially my bad knee and I'm depressed. Other than that... Well, I'm still breathing - and I have chocolate.
Roll on May.

Tuesday, March 15, 2005

Forms... Joy.

I've just posted section 1 of my DLA form.
I've got someone calling me in the next 5 days to help me with section 2 - I can't cope with it. It's like, my mind reads the question, I understand it - right up until I have to put down and answer, then I have to read it all over again - this loops on for maybe 20 minutes until I either just put anything down or give up in frustration until later. When the cycle begins again.
It's more than frustrating - I've never had a problem filling out forms or anything before - I even felt more of an idiot because this has been going on for weeks and I never noticed the bloody helpline number plastered all over the form itself.
Yes I'm a tit.

Amy on the free for all forums gave me this lil snippet of info too which has not brightened my day any:
Good luck with your benefit forms. I strongly recommend you get help filling them in...I used D.I.A.L for mine and they were very helpful...apparently citizens advice are good too.

I had already been turned down for my DLA once before when I got help from D.I.A.L. They arranged a home visit for me cos I was unable to get to their centre...it took ages to go through everything (nearly three hours to fill in the form) but she filled the form in for me and was really helpful.

Take a look at these links too....

http://www.bhas.org.uk/freeguides/dla-adults-physicalgrounds.pdf
All about DLA...

http://www.apachetear.net/textfiles/me_benefits_IB50.htm
this is for when you are filling out your IB50 form when you have been on incapacity benefit for 6 months (your SSP counts towards those 6 months if I remember correctly)

It is really important that you get these forms right so get all the help you can. It takes ages to get anything from them too....I applied for DLA in November, was turned down in January and they are looking at it again now (I had a visit from the doctor about it).

Also remember, that down the line you will have to fill in another, different incapcity benefit form (IB50) if/when you go on to higher rate benefit and you may have to have a medical....I did....

it's hard going. Especially DLA...dont expect to get it straight away...I've applied twice now...first time I didnt really know what I was doing and was turned down...this time I had help from D.I.A.L and they still turned me down! I know more about it this time so I'm asking them to look at it again for me.

You have to bear in mind the basic things that you shouldnt be able to do to get DLA....if you can prepare and cook a meal for yourself you cant get care component...if you can walk 100 yards (I think thats what it is) you wont get mobility component....you have to be very careful with the way you word things and always tell them about the things you cant do not the things you can.

See, the problem is - some days I can do those things, other days I can't - and I can't give a decent guestimate on the frequency of my difficulties either - I can go for a few days of being a 'normal' fully functioning human being, to the next few days unable to even get out of bed to go to the bathroom without help!
But apparantly if you tell 'em that then you don't need help - which is BOLLOX!
Gah, got the shakes so I'm going back to bed again - quick run down on today:

Stayed at Yogi's last night (his mum wanted me fed *grin*)
So up at 8.30 in zombie mode, brought home - couldn't make it upstairs so crashed on the sofa.
Up again at 12, lurched into kitchen got drink and rang helpline number.
(woohoo, cognitive ability returned) Sounded like a retard on the phone, had to check the forms in front of me for my address and phone number, groping for words... Ugh - I hate using the phone to strangers these days.
Forced myself to walk round to the post office (for the dla peoples information I stumbled no less than 5 times) to send off the first part of the form to ensure my claim is taken from february 7th, else I'd have to start this all over again and lose money if the claim is successful.

problems going to the loo (I'll spare any readers the details) shakiness, sore throat, blurred vision and ACHES.
That about sums it up for now.
I'm bloody hungry too and there's nothing in that doesn't need cooking *sigh* It'll have to wait, I just haven't got the energy today.

Monday, March 14, 2005

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.

Sunday, March 13, 2005

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'.

Saturday, March 12, 2005

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...

Sunday, March 06, 2005

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.