Friday, December 16, 2005

People suck.

I'm in the middle of relapseville again.

I don't know if it's because of the cold I caught while visiting the folks in Daventry, the way I've been throwing caution to the wind and actually having a life the last few months or just a combination of the 2.
Either way, I havent been this bad physically since I first got the damned thing, mentally I've never been this bad - though I can explain why my mental state is so fucked up right now:

It all came about because of an impromptu night of clubbing my last night in daventry.
To start with it was a really really fantastic night. There was a slight hiccup in one pub when I had a couple of dizzy spells and a full on sleepy fit (one of the bouncers tried to throw me out thinking I was passed out drunk - imagine explaining that one eh?!) At that point I should've called it quits I guess and got the last bus back but I was with a big crowd of people I trusted and didn't want to ruin such a good night for everyone so I decided to just sit quietly in a corner when we got to the club.

When I tell you the music was fantastic, the atmosphere was buzzing and I was surrounded by people I love and trust maybe you can understand why I wasn't too concerned at the thought of passing out again - I'd had a few red bull and a couple of bottles of water (no alcohol, I no longer drink) So in we went.
Ria (my cousin) had dragged us there to see her boyfriend who is one of the resident DJ's so our little crowd was effectively doubled which made me glad I'd not ruined everyone's night by begging off and forcing us all to go home.
After about 30 minutes or so I had to go crash in the seating area, Ria, Jasmine, Kenny and Fliss all came with me and sat along the wall to keep an eye on my seemingly comatose form until I came around again. After a bit Ria and Jaz (my cousins) went to the bar and toilet respectively leaving me sat a little away from Kenny (my bro) and Fliss (his missus) who were deep in conversation.
A couple of moments later I felt a hand on my inner right thigh and someone trailing kisses up my neck. I wasn't impressed but figured since there were so many people with me it must be one of my crowd fecking about trying to wake me up despite my previous explanations of the futility of it. When there was no response from me this person started lifting my left hand up and repeatedly slapping it across my face and rubbing my arm over the top of my head, this led me to believe it was my brother as I'd told him how much I hated Stef doing this when he's in a wind up mood.
It pissed me off enough I got an adrenalin burst and managed to open my eyes.

When I saw a completely unknown male before me the adrenalin really kicked in and I punched him in the face with enough force to send him back into my brother who turned round and seeing this bloke all over me went nuts.
After I'd calmed him down I found a bouncer and pointed the wanker out to him explaining what he'd done - he walked over to the guy and spoke for a minute before laughing and walking away.
I went and sat back down then the reaction set in along with the shakes and the tears.

I worked on the door for 6 years, I dealt with tossers like that all the time and was damned good at my job. Now I can't even look out for myself never mind other people!
Even on my worst days with this illness I had that inner confidence, a core belief that no matter what I could still look after myself enough to keep safe and out of trouble.

In that second that belief was gone - it's taken me a year to realise that I can no longer look after myself. I feel like something important has been taken from me and that hurts.
I've suffered with this for over a year but this is the first time I've ever felt vulnerable and helpless as opposed to merely embarrassed by my sleepy fits.
That adrenaline burst only lasted a short while and if he'd had chance to recover or fight back I would've been toast because even if I did somehow find the energy to fight back, I no longer have the strength to do so.
It makes me want to scuttle back into my shell and become a hermit again.

Stef has somehow managed to convince me that the hermit life is not going to happen, but I can't help feeling as though this incident has completely rocked the foundations of my self-confidence.

Not only am I physically back to a state where I need help getting in and out of bed, bathing and getting to and from the toilet. I can't do anything more strenuous than wash a few plates without needing to lie back down for several hours. But now I feel like it's too dangerous for me to leave the flat on my own in case I have a sleepy fit.
It's really disheartening - I was doing so well, there was a lot of positive thinking going on, that I could finally start a college course, get a job, join a band...

All down the drain now. I feel like this is never going to end!

To top it off, I got a letter through from the DLA. They're stopping my benefits because they feel I no longer fit the criteria. The appeal process will not be fun and I won't be seeing this new specialist till February... I just want to bury my head somewhere and let it all just go away.

Tuesday, November 01, 2005

Chocolate and mashed potato

Yup, that's pretty much all I can eat at the moment. I'm even having trouble with soup depending on the consistancy.
Dental treatment is all well and good but it's pretty shit if it interferes with my feeding habits like this.
I'm in pain. Mouth pain - I have it on good authority that even giving birth pales into significance compared to this kind of pain. Makes me think getting pregnant might not be so bad after all - everyone else around seems to be doing it, either that or buying a house.

Anyway, I'm better.
Well, not quite cured, but the sleepy fits are now only happening around the menstrual period, who needs Dr's eh?! I've basically self treated throughout this entire crappy experience.
In my honest opinion, diet has the most impact swiftly followed by sleeping pattern. I'm at the stage where I can have a life as long as I keep my expectations low - and avoid too much excersize.
I find that taking 3 Omega 3 oil capsules a day and 1 vitamin B and 1 magnesium tablet help a lot. I also tend to start the day with a banana smoothie (containing milk, strawberry actimel and 1 banana) and a bowl of cereal or half a melon.
I'm fortunate in that my beloved cooks the Italian way, very simple but using the freshest of produce, I also eat a lot more fish than I've ever done in my life.
You'd be surprised but eating healthily every day can really make a vast difference - as does the supplements, If I forget to take 'em it's quite noticable.

I figure that if I can finally sort out my sleeping habits then the rest of the cfs crap will disappear. My concentration will get back to normal, the aches and pains will completely vanish. That's all I have left to worry about to be honest.
I'm quite impressed that in just over a year I've managed to lose over half the symptoms of this crappy illness - with very little medical help.
The painkillers and dothiepin did jack shit for me, I'd recommend anyone else with this to avoid popping pills - get back to basics, think positive and sort out a healthy diet, It's a lot cheaper in the long run and infinitely more satisfying - instead of waiting 3 months for any kind of result you usually start feeling better after only 2 weeks with the right kind of lifestyle.
As soon as I can figure out a way to get rid of the rest I'll get back to ya.

Sunday, October 02, 2005

Bullet in the head...

I realised tonight that I need to see my Dr again.
Comments have been made for a while about my narkiness but I've just shrugged it off as unfunny pisstaking, until tonight.
We had a great time, the pub was buzzing - I wasn't drinking so I can't blame alcohol for the sudden burst of irrational rage that made me want to grab somebodys face and ram it full force through the table - it wasn't even directed at anyone in particular, I just wanted to hurt someone.
The intensity of it was quite shocking - especially since only a few minutes, seconds even, previously I'd been laughing my nuts off at some guy on the karaoke.

I figure the narkiness and lack of sex drive has been going on for at least a couple of months - maybe longer. I just don't know if it's a new and unwelcome slant to this frikken illness or if maybe I need to change my pill.
I hope it's something as simple as the latter but either way, it's worrying.
I don't want to be the nasty narky bitch I've been recently, *grin* maybe if I can get my sex drive back I'll stop being so narky...
It's not so bad when I can catch myself being unreasonably nasty - at least I can apologise, sadly I don't think I catch it often enough. It just worried me tonight because the rage thing is a step up.
I never lose my temper - not completely, not anymore.
I only lost it properly once - I was just a kid but that episode scared me enough that I've never allowed myself to lose it again. I came very close tonight though, what's scariest is it was totally unprovoked and completely irrational. I had to go lock myself in the toilets so I wouldn't start anything till I calmed down - if someone had tried speaking to me at that moment I'd just have kicked off.

I wouldn't mind but I've been really tired on and off today - even had a mini sleepy fit in the pub when we first got settled in. Thursday and friday were basically complete washouts - on Friday I had a bad one, Stef had to carry me back to bed because I was immobile - I hate when that happens, I'm not asleep but I appear to be and it's frustrating.
I have noticed though that usually outright irritability/ resentment gives me more energy to do things (assuming I've not been rendered immobile by whatever quirky crapness has invaded my body) I think Stef has noticed too and that's why he winds me up so much on purpose, it's just starting to get a little out of hand though - I flare up at the slightest thing, take criticism (badly) where none's intended and it's losing the energising effect.
I need help.

Friday, September 30, 2005

Personality disorder? Me?

I don't think so.

DisorderRating
Paranoid Personality Disorder:Moderate
Schizoid Personality Disorder:Low
Schizotypal Personality Disorder:Low
Antisocial Personality Disorder:Low
Borderline Personality Disorder:Low
Histrionic Personality Disorder:Low
Narcissistic Personality Disorder:Moderate
Avoidant Personality Disorder:Low
Dependent Personality Disorder:Low
Obsessive-Compulsive Disorder:Low

-- Take the Personality Disorder Test --
-- Personality Disorder Info --



I've had a long haul of 'ner' iness. I feel restless but I'm just too whacked to do anything. I'm especially pissed that my sex drive has vanished. Completely.
Yes I've had the odd day or week here and there where I've been too tired or achey to get 'in the mood' and on the odd occasions where that's not a problem I may have been totally wiped out after being 'in the mood' - but this last month or so has been crap.
I just can't get any enthusiasm up at all because I just feel too drained. It's hard to explain to the person you love that it's not them - especially when to their eyes I seem to be handling things better lately, I'm getting up, I'm going out more, I'm cleaning a bit more regularly and I'm definitely eating better.
But I just don't have any 'urges' It's just not natural.
Even when I was feeling really crap before I could still feel horny - even if there was nothing I could do about it, these days...

It's like some switch has been flipped to the 'off' position. I need to do a little re-wiring methinks before it all goes tits up!

Tuesday, September 13, 2005

Supplements and cabbage stew

That's basically what I'm living on for the next 2 days, that and my chinese tea.

Since moving into the flat I've let my diet slide again, snack food, tea and lots of coffee, not a supplement in sight and a terrible sleeping pattern. Is it any wonder I've reverted back into a big bag of hurty things?
Probably not.

I'm trying to get back into the eating healthy routine I'd started on, fresh foodstuffs, not much caffiene, try to cut out the dairy where possible - which is hard.
I've also discovered that the actimel stuff really has helped with the acid/ wind problem, this in turn is helping me because I can get to sleep now without feeling like I'm gonna chuck.
All in all, as long as I can regulate my diet and avoid overdoing the exercise thing on a good day, I may finally lick this beastie enough to get back to work - or at the very least go and do some form of course/ re-training.
It's just my sleeping habits that are the real problem. I've never been a day person so it's doubly hard getting into a 'normal' routine, maybe if I moved to Australia it'd help *grin* I tend to feel ready for bed between 2-4am and awake and up by around 10-11 (ok, sometimes 12-2) it's not that far out of whack, but enough for various bods to tell me I'm not trying hard enough *sigh* Like they'd know!

Even though I've had this over a year now, I still feel like people think it's all in my head, my gran (bless 'er) has outright said that to me, she just doesn't understand the problem, but then as anyone with this condition knows, few people do.
Lets face it, the only time people really see you is when you are having a good day and can get out - the rest of the time you hide away conserving your energy for those good days.
Kinda sucks great big hairy donkey bollocks.

If I could just get the pain under control I should be able to have a few more good days, to be honest - I don't think I'm that bad with it. I can walk round the precinct most days, get up do 'stuff' I just feel tired. Not the bone weary exhaustion I felt when this first kicked in - which leads me to hope I am getting better, this is just a general 'need to sleep' feeling but I can put it off for longer now.
I'm getting there - slowly.

Wednesday, August 31, 2005

Gastroscopy

Oh the joys.
Flexible hose + sedation + gag reflex = not much joy.

Still, I have been waiting over 4 months for tomorrows procedure so hopefully now they can tell me why I have such bad acid and the occasional vomit bouts. Just please god don't let me have an ulcer or anything really nasty. A quick fix that lasts, that's all I'm asking for.

I have also been assigned to another Dr.
Guess I should swing by and whinge at him/ her about my joints. The elbows and my knee are making it difficult to sleep lately - poor Stef keeps saying I keep him up through all the kicking and moaning. Could explain why I don't wake up refreshed, nightmares and pain aren't really a great combination for a good nights sleep now are they!?

I need to speak to mum and find out who it is she see's at the hospital and see if I can get them to refer me to him, the guy sounds bloody brilliant. She has councelling and acupuncture - I'd like to give reflexology a try, the whole foot massage thing helps me come round from a sleepy fit when Stef does it, perhaps if done by a professional it can do a bit more - especially if I can combine it with acupuncture. Lets face it - the drugs don't do shit!

Thursday, August 25, 2005

I'm all alone... I'm all by myself... Sing along!

I've moved, life is good - or at least I hope it will be once I get registered with another Dr.

The last 3 days have been crap - I've spent a total of maybe 5 hours out of bed. yesterday was so bad I think it scared the blokey - he's not seen me do the total shutdown before. Seriously it's not pleasent, I just lie there like some brain damaged zombie. It's not pretty.

I'm thinking I need to ask about my elbows and the aches - the pain has intensified since the move, I'm wondering if maybe I did some damage trying to lift things - I just don't know. At least my benefits have been sorted so I can get by without that kind of stress - YEY Salford! Seems their benefits dept is on the ball.

I'm just a bit pissed off right now. Everyone is at the pub and I'm stuck here trying not to feel sorry for myself, I wanted to go but there was just no way I was physically up for it, I've been passing out all day on and off - just too weak and icky for words. Lets just hope I'm functioning by Sunday else I'll get grief off dad for missing the party. I still need to sort out a costume as well.
Anyone got a 50's dress lying around they'd like to drop off for me? Oh - and advice on hairstyles would be helpful, I'm hoping to avoid just sticking it up in a pony tail.

Saturday, July 23, 2005

Crapness galore

Yup - I think if I ever needed a porn star name, Crapness Galore should fit the bill.

This whole effort of moving house is killing me, Scott came round to the flat yesterday to help with the vast amount of preperation still needed before I can even think of decorating (which I have to do before I can get carpets/ flooring laid, can't move in till that's down) He not only did as much of the hallway as he could, he carried on with the wall scrubbing when I crashed.

When I managed to get up and moving again, we went to B&Q - I'm truly blessed in my friends is all I'll say. He managed to make me feel less embarrassed about the whole passing out thing than I would've been had I been alone. I'm just starting to feel paranoid about going out alone again. It's not good.

Today hasn't helped any. I managed to drag myself to mums for a shower around 12.30, we then walked up to a white goods place Dave knows, that's when I started feeling really bad. Irritable, shaky - I put it down to pms and just begged off doing anything else. Made it to the flat before passing out on the rapidly deflating mattress. 3 hours later I had to ask mum to come round so she could get me a drink - I was burning up and unable to get out of bed. They brought me back here and I've been doing the sleepy thing on and off all night.

This just SUCKS ARSE! I'm NEVER going to get this place ready to move into! I'm just constantly tired, and the more I push myself to do the more tired I feel and the less I manage to do. I HATE THIS!

If I had to have an injection every day for the rest of my life I'd do it if only to get back to normal operating levels again. I've had this headache for 3 days straight, every muscle hurts, I've even had to start using the damned inhaler I was given. I hate those things.

I've also got a medical assessment on Tuesday, I'm not quite sure how I'm getting there yet - if Stef's back I'll ask him (assuming he doesn't need to go into work) if not I'll just have to ask Cheryl or Scott to go with me. Either way - the way I am at the moment I'm damned if I'm going anywhere alone!

Saturday, July 16, 2005

Hot weather and moving home

Not a good combination.

I've thought for a while that I was getting better - sadly it appears I was deluding myself.
I had around 2 months of nothing but the occasional sleepy fit and even they were of a shorter duration and easier to fight off. Sadly as the weather changed, so did my symptoms - the aches have returned with a vengeance as have the pins and needles, sinus problems, extended sleepy fits and dizzy spells.
It's just not fair.

I've also courted the possibility of a total relapse by overdoing it now I have a flat in Swinton.
I realise that the reason I've been fine for so long is not that I'm getting better - I've just not been doing anything. Anything at all. I was deluding myself into thinking I'd be fine to get another job or start a course, the reality of moving house is definitely putting those hopes on a back burner.
The schedule I set out for myself fell by the wayside from day one due to a nasty throat infection. The written journal stopped after just over a week - I kept forgetting to write in it.
I'm basically useless.
My days consist of lounging around in bed or on the settee, cuddling my bloke or surfing the net.
I can't do anything.
Yes, I'll try.
If I know stef's coming over I'll start a job with every intention of completing it - but I either get distracted by something else or just crash.
Lately the latter seems to happen with far too great a frequency.

I went to my cousins 18th today. After 2 hours I was forced to cadge a lift back from my aunt because I was knackered - I claimed it was so I could continue packing (because I didn't want to alarm anyone) I don't think my step mum bought that excuse though.
I just didn't want the embarrassment of passing out in front of a load of people - especially when there was a video camera doing the rounds! I'll flake in the privacy of my own home if you don't mind!
I'm just glad my boyfriend is so amazing. I'd be screwed moving into this flat if it wasn't for him, there's so much that needs doing! He's offered to put up some shelves, lay my flooring and re-tile the bathroom - that's after already helping me get the paint and start preparing the place for decorating! He ferries me around everywhere and just generally cares for me. I'd be lost without him.
I just wish I wasn't so damned useless!
I can't even strip a bloody wall myself without passing out for the best part of 2 days!

I still need to call both the DLA and the benefits people and inform them of my move. I have to change Dr's (joy) this could be a good thing though - mum's getting a ton of help from her Dr, and Hope hospital are putting her through for acupuncture and all sorts - which is more than can be said for NMGH - I'm still waiting on the gastro endoscopy I was referred for over 2 months ago for my embarrassing belching and excessive acid reflux.
I'm positive about the move to Swinton though, it will be a good thing for me - I just wish it was an easier process is all.

Wednesday, June 08, 2005

As predicted

Just got back from the surgery. I was right, the guy made me feel about an inch small.
I told him about the ulcers on my throat, the sinus headaches and sneezing - he barely glanced at me the whole time I was there and declared it was sinusitus.
I now have a prescription of 10 Ciprofloxacin 250mg tablets, I'm to take 2 a day with water and apparantly all will be well.
As soon as I mentioned the narcolepsy thing he said 'We've had no report through (cursery 2 second glance at the pc) so you'd be best coming back to see your usual dr in a couple of weeks.

Gotta love 'em.
I was in and out in under 5 minutes - that's a record even for me. Most of that time was him filling out the prescription for me.
I hate Doctors..

Going in circles...

I've a Dr's appointment tomorrow with yet another guy I've never seen before *sigh*
Dr's make me nervous. I always feel like a hypochondriac - always have done, even before this all kicked in.
I know I never really get off my chest everything I wanted to say before I walked through their door, I just turn into a little girl who doesn't want to cause a fuss.

I need to stop doing this.
Now.
I need to tell him about my ulcerated throat and sinus problems, but I also need to make it clear that I'd like a second opinion about the CFS diagnosis because of the questions raised by Dr Whatever-his-name-was during my home assessment.
I can't have 2 different illnesses - I just refuse to accept that both of these 'things' could have started at the same time, it has to be one or the other.

I've had 2 replies to my queries regarding the possibility of having both - neither of which were from the London sleep centre, it seems the American research centres are happier to correspond by email than my own countrymen.
Ah well...
The first was a very swift reply from a lass at narcolepsy network inc:
Hi Vicky:

I know of no reason why CFS and narcolepsy would be mutually exclusive,
although I can't say that they are commonly found together, either.
Narcolepsy has been misdiagnosed in some people as depression,
schizophrenia, ADD, ADHD and a myriad of other conditions. If you've been
clinically diagnosed with CFS but this diagnosed hasn't been confirmed with
lab or other definitive tests, it's possible that CFS is a misdiagnosis.
It's also possible that you have narcolepsy in addition to CFS.

Can you describe your cataplexy? When does it occur? What causes you to have
it? What part or parts of your body are affected? What happens exactly? How
long does it last? Can you describe a couple of your cataplexy experiences
for me? Cataplexy can be confusing to someone who doesn't have it.
Hopefully, the information you provide will give me a better sense of
whether it is cataplexy or not. (Clear-cut cataplexy allows for an automatic
diagnosis of narcolepsy, but one must be sure ...)

It would be best for you to have a sleep study for narcolepsy. They will
have to consider any impact CFS could have on the results, but this should
not be a problem for a good sleep doc. I suggest you choose a sleep center
where the director is a sleep/doc neurologist, if possible, because
narcolepsy is a neurological disorder. Most sleep docs have backgrounds in
pulmonology, and many fall short on their knowledge of narcolepsy diagnosis
and treatment. You can find a list of accredited sleep centers at
www.aasmnet.org. You can then check the doctor's background at www.absm.org,
under the link for Diplomates.

Have you considered the possibility that you have another sleep disorder,
such as sleep apnea or Periodic Limb Movement Disorder? These can make you
very sleep during the day because they reduce or prevent the patient from
getting deep, restorative sleep.

If you are diagnosed with narcolepsy, we encourage to join Narcolepsy
Network. We are the only national patient support group for persons with
narcolepsy, and we rely heavily on our membership to sustain operations.
You'll find a description of our member benefits on the Membership page of
our website at www.narcolepsynetwork.org. In particular, our newsletter
serves to empower patients to get the best possible care and maintain the
highest quality of life possible.

Sharon
This was my response, I'm hoping that she gets back to me equally swiftly:

Hi Sharon,
First of all THANKYOU for responding so quickly!
To be honest until I read the description of cataplexy I would not have thought there was a name for it - I just call them 'sleepy fits'.
They tend to come on with a few seconds warning - everything starts feeling a little 'distant' or my hands start tingling a little, it gives me just enough time to either tell someone if I'm out (I rarely go anywhere unaccompanied these days because of them) or to get myself seated comfortably.

They come on in stages:
1. Limbs become too heavy to move, sluured speech/ can only
communicate in grunts
2. unable to move or communicate but still aware of surroundings and
whats going on
3.unable to move or communicate, only vaguely aware of whats going on around me
4. unable to move or communicate, aware of myself and any physical
discomfort - ie if my head has fallen too far forward and I have no
support. Not really aware of anything else.
5. 'asleep'

Usually I can kind of 'come round' within about 20 minutes before it gets to stages 3-4 if it lasts longer than that then I'm going to be out for the count.

When I wake up I tend to be a bit fuzzy headed - this is worse the longer I'm out.
Sometimes I can be like a walking zombie - I have been known to stand looking at a sink full of pots for a good 10 minutes trying to figure out what it is I was going to do.
Needless to say it gets very frustrating.

I have not really figured out what triggers it, it does seem to be quite random though my boyfriend has found that if he catches me before I get too deeply in then a foot massage will bring me around within 5-10 minutes (though that could just be a coincidence)
I haven't noticed that laughter sets it off, quite the opposite - if I can be made to laugh it helps me 'fight it off' but it does happen more frequently when I'm stressed about something.
When I say my limbs become too heavy to move I mean that quite literally, first of all my hands and my arms go - since I usually have chance to sit down I'm not too certain at what point my legs stop working because I'm generally too busy fighting to keep my eyes open and communicate to whomever I'm with not to worry about it.
I can fight it at least half of the time - but when I do it's only for about 20 minutes at the most and then I have a really bad one so I tend to just 'go with it' in the hope that i only lose a maximum of 20-30 minutes from my day instead of the rest of it.
I can have more than 1 attack a day but rarely more than 3.

The other worrying thing is the 'hallucinations' mentioned on the site - I've always had very vivid detailed memorable dreams - ever since I was a kid.
I've numerous times been adamant that I've said or done something that in reality I haven't, I also have the most horrific nightmares - so vivid I can describe them in extreme detail.
To me thats normal, but almost everyone I know says they rarely remember their dreams, let alone in such detail, nor do they mistake dreams for waking life as I have been known to do from time to time.
The second response I got was from the centre for narcolepsy research at the university of Illinois in Chicago

Vicky --
Thanks for your inquiry. However, we cannot readily put your mind at rest about this issue, for several reasons:

1. Different sets of people with narcolepsy have different sets of symptoms.

2. Some people with narcolepsy have other sleep disorders or other medical disorders. It can be difficult to tease these various disorders apart.

3. A person with narcolepsy may experience changing sets of symptoms over time.

4. We still don't have a full and well-confirmed understanding of the nature and causes of narcolepsy. Therefore, specialists will sometimes disagree about a diagnosis of narcolepsy.

However, clear and recurring incidences of cataplexy would generally be considered as confirmation that a person has narcolepsy.
I suggest that you visit the following website for further information:

http://med.stanford.edu/school/Psychiatry/narcolepsy/

He also gave me the name and address of a lady at this institute and suggested I contact her for further information. I may well do so if I have no joy at the dr's tomorrow.

I just wish that there was someone equally helpful in this country I could speak to.

Tuesday, June 07, 2005

So much for schedules...

I had it all timetabled out, got a new journal for the purpose - and end up spending all day in bed, when I wasn't on the toilet that is.

My throat is a raw mass of disgusting ulcers, it's so bad I couldn't swallow when I woke up - and there is so much cattarh down there I'm having difficulty breathing too.
*sigh* On top of that, I'm soooooo thirsty! I've managed to get through an entire bottle of cordial in one day - those things normally last me at least 2 weeks! and as if that's not bad enough, approximately 5-10 minutes after having a drink, I'm on the fecking toilet!

I ache like you wouldn't believe, the back of my mouth and throat feel like I have razors embedded in it that scrape the tissue when I swallow, I keep getting sinus headaches and feeling dizzy.

I'll be glad when I have this gastro endoscopy! at least then they can sort out whatever it is thats causing all this excess acid, wind and nausea. Perhaps it'll cut down on the amount of ulcer attacks I get as well.
*sigh* I guess I'll just have to try and stick to my timetable as much as possible, I need to get back to work. I'm sick of having to deal with the council with regards my benefits.
It may be a little harsh but I've sent them this letter:

To Whom It May Concern,

I am writing to you in complaint with regards to my housing/ council tax benefit (Benefits no. ########.)

I have repeatedly given you all the information that you have requested. You had already received my claim for housing/ council tax benefit on 22/09/04. It then took until 11/01/05 for you to process this claim because somehow my information was getting misplaced between the customer service booth in the town hall and your processing department – again, in the town hall.
This happened on so many occasions that I requested an explanation for the receipts I was being issued from the front desk detailing what information I had provided each time.

I was told that it was policy to ensure that I would not be penalised if I could prove I had given the information in at the time it was requested - but that I would still need to bring it in again as this information still needed to be seen by the person processing my claim.

It seems to me that perhaps a more efficient system needs to be put in place as the current one is obviously somewhat lacking.

On 17/03/05 I received a new claim form from yourselves with a request to fill in and return as soon as possible in order for you to check the details of my existing claim.
On
18/03/05 I did this - along with all requested bank slips, wage slips and proof of incapacity benefit. I know this because I am looking at my receipt as I type.

On
16/04/05 you sent me a BU sus1 in which you informed me that my landlord had indicated I was in arrears and that you were suspending my benefit as of 28/03/05.
I telephoned your department and was told that if an error had been made my landlord would need to write to you or I could provide proof in the form of receipts or bank statements.


On
25/04/05 my landlord did write and tell you an error had been made but instead of reinstating my benefit I received another letter from yourselves.

On 13/05/05 you sent me a BU sus(VF)1 in which you requested information of a cheque paid into my account, there was no mention made of the letter dated 16/04/05 yet the date of my claims suspension was exactly the same - 28/03/05.

If both enquiries were from the same information – why were both requests not made at the same time? It seems incredibly inefficient to drag out a claim in this manner. Surely by asking for all the necessary information at once it could be settled once and for all, thereby freeing up time for another claim to be dealt with.


I made an appointment to speak to one of your advisors on
23/05/05 I brought the entire file of correspondence between myself, my landlord and your department. This included payslips, bank statements, receipts, Dr's letters and all paperwork pertaining to the incapacity benefit and my illness in general.
This is what the CSO (Jackie Rimmer) wrote on the counter report:

Miss Stringer has called to the counter to chase up her claim which has been suspended.
We wrote to her on
13/05/2005, BU sus 1 letter, stating that she has not returned her claim form.
This was received in our office on
18/03/2005.

We also asked Miss Stringer about details of a cheque for £980.00 that was paid into her bank account on
11/01/2005 - this was a housing benefit payment from us -

We have now received all the information we have requested and have proof of her incapacity benefit.

Miss Stringer is not in arrears with her rent at the moment.

Would you please re-instate this claim as a matter of urgency as this matter is causing her a great deal of stress.

So you can imagine my surprise this morning when I opened a letter from yourselves dated 31/05/05 - a BU Inter(VF) Follow-up.

It starts by thanking me for returning the form you sent on 14/03/05.
Yes, that would be the form you originally claimed not to have received when you sent me form BU sus(VF)1 dated 13/05/05 as stated on the above extract of the customer services counter report.

It goes on to state that you need more information from me.
Despite that same report stating that:

We have now received all the information we have requested.

Nothing had been previously requested of me regarding the DLA and as it is usually disregarded as income by every other benefit I was not expecting any such request for information at all.

Since a request has been made however, once again I have to query why this was not previously asked of me.

Why is resolution of my claim being strung out in such a way?

At this moment in time I’m afraid I cannot give you this information as I have not yet received notification from the DWP regarding my claim for DLA. Nor do I have any idea when I will hear back from them.

What I can tell you is that every time there is a set back to my claim causing me stress and upset, it sets my recovery back by weeks if not months.
I have no problem with the staff on the front desk – Both Bob Pierson and Jackie Rimmer were courteous, understanding and made sure to go over everything in detail to ensure there were no errors.

It appears to be the processing department who find it difficult to do the same.

I would like you to bear in mind that I am not claiming benefit because I wish to avoid work, I am claiming benefit because I have paid my taxes and my national insurance so that should illness strike (as it so obviously has) and I am unable to work I would at least have the ability to keep a roof over my head!
I was forced to leave a well paying job and end up in a large amount of debt due to illness - the joy I feel every time I see my bank balance now is just indescribable - that 90% drop in income just does it for me every time!
Though to be fair, in such a busy department perhaps it has escaped your notice that I am not claiming benefits for kicks.

The fact that I cannot at present lead a ‘normal’ life is not helped by the fact that every time I have to make a phone call to your selves or organise for friends or family to accompany me into town so that I can try to chase up my claim, I am left physically, mentally and emotionally wrung out.

I can only assume that either I have been singled out for some kind of harassment or that your processing department is in fact grossly incompetent and every claimant has to undergo this drawn out ‘procedure’.
Needless to say, neither scenario reflects well upon your selves.

I would appreciate it if something could be sorted out as soon as possible so that I can concentrate on returning to a state of health conducive to work.

However, if this state of affairs continues I shall have no choice but to look at what legal or media based alternatives I have to encourage you to organise your department properly, because at present I am hard pressed to understand just what I have paid my national insurance contributions for.

Yours sincerely

Vicky Stringer.

I actually emailed this to them on friday, no doubt it will be ignored - but that's ok, I fully intend to both fax and post a copy tomorrow and I'm going to pop into the offices on wednesday to hand one in personally. Whilst awaiting some kind of response I also intend to go to the C.A.B. in Swinton with mum on Friday - I'm getting just a bit sick of all the fucking around from them.

I even recieved another letter this morning stating that they've recalculated my benefit due to a change in my income, my questions are "what change? when?"
If I were that incompetant at my job I'd have been fired by now.
I certainly wouldn't have the company holding the position open for me after nearly a years sickness! Especially when they are fully aware that I still have no estimate on the time it will take before I'm fit for work again.
If I wasn't already ill the stress of dealing with the benefits department at the town hall would certainly make me so!
Bastards.

Saturday, May 28, 2005

What the..?

I went to Spain.
Yes I did. I guess that makes me an evil benefit bludger now.
Well I've been paying for it this last week trust me.

I've 'slept' most of the last 10 days away - that is I've been in bed and I've had a lot of dreams - I don't feel as though I've had any real sleep though.
It's almost as bad as it was when all this kicked in. The fact that I've also had the most painful period in months hasn't helped.

It's just been stress upon stress upon stress for ages, I thought when I went to Spain it'd be a decent break, a chance to pull myself together... It didn't quite work out like that for many reasons - which I really can't be fecked going into.
What also hasn't helped my state of mind is the DWP visit I had the other day. The Dr came to do my home assessment for Disability living allowance. He listened as I described my symptoms and asked good questions...
But he threw a bombshell at me as I was describing my 'sleepy fits' - these things have been my main concern from day one - they were what made me seek medical advice in the first place. He says they don't sound like CFS at all.
It also turns out that Margeret Miller, the lass I've been seeing at the hospital isn't in fact the specialist - She's a nurse.
So who the fuck has officially diagnosed me? Which was the very question (albeit phrased more politely) that the rather friendly DWP Dr asked.
I'd love to know.

His very words were "You should really ask to see Dr Snowden because those symptoms are not usual for CFS, they raise the issue of Narcolepsy"
Joy.

So now 10 months into 'dealing' with all this, I have that thrown at me - the scary thing is, I've read the bumpf and it sounds very familiar.
But then so does CFS and Fybromyalgia and god knows how many other things I was considered for during the first round of tests.

I just think I should maybe start knuckling down and keeping a proper day to day journal - god knows this one isn't working.
I need to buy a big A4 page a day diary and USE it! I need to list so many things though it's going to be quite a time consuming task in itself.
  1. Food diary
  2. Sleep diary
  3. Dream diary
  4. Exercise diary
  5. Daily symptoms and what may have triggered them...
That #5 is going to be the tough one - as anyone in a similar position to me knows, they change almost as swiftly as the weather - and with much less warning.
I could also do with making up a weekly timetable for myself so that I can get back into keeping a routine again. That's the one thing that all those illnesses agree on as a key to controlling it. Routine.
I'm not very good at routine.

I've sent an email to the London sleep centre:

I have been diagnosed with CFS, however I have also been seen by another DR who thinks I may possibly have Narcolepsy as my main symptoms reflect this more.
Is it common for this kind of crossover or can a person be unlucky enough to get stuck with both conditions?

I am quite concerned. In the last 10 months I've been told so many conflicting things I'm not sure what to believe anymore, while everything I've read about CFS sounds very familiar, in the last 2 days I've read enough about Narcolepsy to worry me a great deal as this ALSO sounds VERY familiar.

Please can you put my mind at rest about this?
Many thanks
Vicky.

Here's hoping some one gets back to me soon eh?!
I did check around the site though and here's something I should probably bear in mind when organising my timetable:
Good Sleep Hygiene Promotes Better Sleep
Here are some tips that may aide in a better nights sleep:

1. Keep a regular sleep and wake time. Try to adhere to this every day.
2. Avoid caffeine and alcohol four to six hours before bedtime.
3. Don't exercise within two hours of bedtime. Exercising 5-6 hours before bedtime may help you sleep more soundly.
4. Avoid large meals within two hours of bedtime. If you feel hungry have a light snack at least 30 minutes prior to your bedtime.
5. Sleep in a dark, quiet room with a comfortable temperature.
6. Only associate the bed with two things, sleep and sex. Try not to get into the habit of reading and watching television in the bed.
7. Only go to bed when you are sleepy. If you cannot fall asleep within 20-30 minutes, get out of bed and do a quiet activity elsewhere and then return to bed.

Some experts suggest a wind-down ritual to aide in a more relaxed sleep, such as a warm bath, meditation, soft music or reading 30 minutes prior to bedtime will help you to sleep more soundly.
Right, despite being in bed most of today I'm heading back, I'm knackerd and aching like a fuquh.
I'll clean and hoover tomorrow. Really I will.

Monday, May 23, 2005

Those lovely benefits people

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

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

No.
The sum in question was my benefit.
From them - the people querying the sum, you know - our highly efficient county council benefits agency/ treasury department.
The reason the amount was so large - it was backdated for the almost 5 months it took to get it.
Why did it take almost 5 months to receive when they state it can take up to 28 days to process a claim? They not only asked for the same information at least 3 times (at around 3-4 week intervals) they then asked for different information from both my Dr and my employer - several times.

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

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

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

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

Monday, May 02, 2005

Stress, stress and MORE stress!

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

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

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

Tuesday, April 12, 2005

Bad girl

I didn't make it into hospital today for my energy for life thingamajig.
As has been the case over the last few nights I haven't really slept, but this morning the dizziness I've felt over the last few days hit with a vengeance, I literally could not stand up, yes physically I could move, but the actual process of trying to stand left me falling back down again feeling nauseous.

I had this for a few hours on saturday and sunday, yesterday I was fine (apart from a godawful migraine) I've felt weak and dizzy and sick on and off since thursday though. I'm not sure if I should go back to my dr or if ths is just another wonderful manifestation of crapness.
ugh it's kicking in again i'll finish this later, screens going fuzzy.

Sunday, April 10, 2005

Reprimands and confusion

One of the lasses from the 'support' group asked for a list of my symptoms and more information on the energy for life program.
I supplied this - basically just cut 'n' pasted from the info I have on here (see, a blog is a good thing) She and others soon responded - I don't think my previous email regarding positive thinking went down too well with people (though in retrospect, what did I expect? No one likes to be told they're being miserable - especially if they have good reason to be!)

Anyhow, this was my response from the lass posing the question:
Well, I'm in two minds over the programme, in theory it sounds like a good idea but the 9am starts and 3 solid hours of sessions shouts to me that they have little understanding about ME. I also find it worrying that they are debating the pros and cons of pacing, if the main charities are saying this is the best road for us to go down I'm more inclined to listen them.

I'm very happy that you feel the program is helping but I do find it sad that you feel we are dismissive of therapies that are on offer if they don't fit in with our 'ideas' about ME.

IF anybody has come over as dismissive its probably because we've heard it all before, if these therapies are the magic cure surely we would all be better?? You have every right to be optimistic as you've only just become ill, you haven't been on the treadmill of various doctors for years with them telling you its all in your mind etc - speaking figuratively here as I've not really had that experience!

As you have been diagnosed quickly you have every chance of returning to full health and you haven't been exposed to negative attitudes so are more likely to feel positive about this programme but you need to understand the other people on your course who have been ill for a long time may not.
If they didn't get a diagnosis and they tried to carry on as normal it may be difficult to improve to such an extent as you. Plus they've probably heard it all before

I have been ill for over 10 years - with better and worse times - I managed to get myself back to education and carried on with my life for 5 years before I became worse again. I have never dismissed any treatment that has been offered, in fact I think I've tried most :-) but none have worked, including graded exercise. All they are offering you is GE which has been proven to not help people with ME, as far as I'm aware it can help people with CFS.
With regards to CBT I agree that some people can benefit from talking to someone to help them gain a more positive outlook and help them focus on improving, as its very easy to become downhearted but it shouldn't be seen as a cure.
Also only as long as its done by someone who understands about ME and who doesn't believe its a psychological illness.
This has confused me - all the reading I have done and the information I have from my own Dr state that CFS and M.E are one and the same thing. Yet she talks about them as 2 seperate illnesses.
How can they both be exactly the same and yet different? Where is the divider? They both have the same symptoms, the same type of diagnosis and both get treated together.
It makes no sense to me.
And I have no clue what CBT is.
This whole thing just made me feel like I really don't want to talk to anyone on the board again.

Everyone with this 'curse' is different, the symptoms vary wildly from person to person and the help they recieve is just as chaotic - yet the emotional reactions all seem to be the same.

I dunno, I just feel like everyone on there is just looking for a way to shout:

"Hey, look! I'm ill forever - and I'm worse than YOU! But you're going to end up like me in the end anyway, probably - good luck staying optimistic, I was once, didn't help ME either though..."
It's hard to stay truly positive in the face of all that "Nothing works for me - but it might for you..." Bullshit - that's just basically sounds like another way of saying "well, I've obviously got this worse than you have so it's ok for me to give up but you can afford to be positive about it"

So under the guise of being strong and optimistic, any positive thing just feels like something added just to soften the blow.
I know that's a really shit thing to say, I've never met any of these people and I don't know what they have to deal with day in and day out. But seriously, to me almost every post just reeks of hopelessness disguised as some form of positive affirmation that things are looking up! Who are you trying to convince here people? Me or you?!

This one was a slightly more positive reply from my point of view - but again, as you can see from the parts I've put in bold on both emails - overall the response was not quite as encouraging as I might hope from people in a 'support' group:
Hi Vics

I've had ME for 8 years now. I was diagnosed by my GP after just 2 months. Both he and my specialist Dr Pattrick believd I had a physical illness with a biological cause. I have not had a bad deal from the medical profession.

I personally requested that I try graded exercise which I did on a one to one basis with a physio and the sessions lasted half an hour.
The physio asctually stated that I had one of most postive attitudes he had come across. I really believed it was going to work but after the course I just went more and more down hill.

I think the reason the people on the courses who have been ill for 8 or ten years are sceptical is probably because increasing their activity levels and exercising more is something that they have tried over and over again in the past with a positive attitude and it has just resulted in them relapsing.

I personally think that a positive attitude helps but whether you make a good recovery from ME is mainly down to luck.
A school friend of mine became ill with ME around the same time as me I remember her saying to me "I've told myself I'm going to be ill for 10 years and any less is a bonus".
She had a negative attitude I was always commended for having a positive attitude. She recovered and I didn't.

Graded exercise does work for some people. I know 2 people who swear by it. However, even the medical advisor of the ME Association has stated how it harms more people than any other therapy.

I also know of many pepole who have made good recoveries from ME and they mainly do so within the first 5 years of the illness so as you have only had it for 6 months and you are able to attend these courses you obviously have a fair chance so I wish you the best of luck.
That last paragraph is by far the most encouraging thing I've heard - It's just a shame that the balance of both and other responses is weighted so far to the contrary...
Ah well, I've decided to stay away from any outside influences, take my concerns in to the guys on Tuesday and just try to keep to this course until my 6 weeks are up.
Fingers crossed I'm one of the lucky few it helps eh?!

Sadly, with all the family stress I've had since Thursday I haven't kept to the exercises this week - but I intend to give 'em a try again from tomorrow and I'll make my apologies on Tuesday... At least I can make it in - Sean has loaned me £200 to keep me going until I get some response from the benefits people. Lets hope it's soon - I can't keep borrowing off people like this just to get by!

Wednesday, April 06, 2005

Rants and state of mind

I've just recieved the following email from someone via the support group:
Glad to hear your doing well on the Energy for Life programme.
I've heard other people saying it wasn't very useful I met someone a few weeks ago who had been on the Energy Back to Life programme. She said the sessions were 3 hours long and started at 9am.
She felt it was like a form of bulllying and said the patients all met up in the car park afterwards to say how awful it was.
She just went along with things and said she was OK so they would leave her alone. They write things on the blackboard about self-esteem and motivation. She said she was virtually bed bound for the rest of the week and loads of people dropped out of the course.
I did once speak to someone who said they found the course helpful but she was already 80% recovered before she went on the course and admitted it did not lead to any improvement in her symptoms.
It kinda made me go off on one *blush* thought I'd share my response to the group in it's entirety, reading back - possibly I was a little harsh - I know some people are unable to function at all because of this, but to not even try something else?
I was a bit gobsmacked and... well... livid I guess...

With regards to the 'Energy for life' program,
Yes the sessions do start at 9 and I'll be the first to admit that it's a long 3 hours.

But I can also say that I've only really had CFS 'properly' for 6 months, I'm not yet at the stage of going once to something and sceptically listening whilst saying quietly to myself "that's no good, it won't help ME" and if I do catch myself doing it I hope I give myself an internal slap and open my mind to the possibility that it
might!

It was interesting for me because this was the first time I had encountered other sufferers face to face. I found that while all the other people there were friendly and intelligent, many of them have had this for at least 8-10 years - some longer.
On the whole, they also have not been as lucky as I have with my Dr.
I just felt that these ladies had been disappointed so often that they had resigned themselves to being sick and thats it, nothing anyone could do about it - That this was possibly just another thing sent to 'prove' they're not really sick - that it's all in the mind.

My dad and my boyfriend have been throwing the 'positive mental attitude' phrase at me till I'm ready to scream. But after sitting in that room for those 3 hours I'm beginning to think they may have a point.

Most of the people in there were just plainly disgusted at the idea of graded exercise (I'll admit I'm a little trepeditious having had more than a couple of adverse reactions to pushing myself physically - just as I guess you all have) the unspoken consensus seemed to be that "I'll do it because I have to, but it'll just make me worse - you'll
see".
I came home feeling a little sorry for the 2 physiotherapists, I think they're going to be pushing uphill with this - if the lasses don't just drop out completely.

Yes, I appear to be in a 'better' physical state than most of them - but I was VERY active before this kicked in, I've not allowed this to stop me doing a little bit when I have a good day even if it knocks me flat for the next week (ok, so after the session I now know thats the wrong way to go about it, but it has meant that when I have a good day, my body still does what I want it to do, mainly)
The only person not giving off "yeah, whatever" vibes was a lass who seems to have suffered with this forever.
She was in a wheelchair and could walk a few yards with help or a stick, she's been having physio for weeks to enable her to do this program.

To my mind - if physiotherapy can help her get out of bed, into a wheelchair and able to do at least 6 minutes of physical exersize a day after doing NOTHING for the last 6 years - well I'm all for giving it a PROPER try - mentally AND physically!

Saying you're "ok" and 'just going along with things so they leave you alone' totally defeats the purpose of it - everyone has different limits!
They need to know yours otherwise it will set you back because they'll have you doing too much while they attempt to gauge them!
You already know that if you do too much then it will seem like torture and you will feel crap afterwards - that's what they're trying to STOP!
(sorry, getting worked *breathe*)

My question is:
Why did they all meet up in the carpark afterwards to whinge? why did they not instead give some constructive feedback to the people running the program?

How are we supposed to get decent medical care if we act in this way - these people are not gods and we can all agree the medical profession do not really understand this, unless we HELP them understand it - how can we expect them to help us?

Um... sorry about the rant, but the level of hopelessness about it I seem to encounter everywhere really bugs me.
I KNOW it's hard - I have it too, that's why I joined this group - for a little moral support and the hope of some information. I wasn't expecting to feel as if there was no hope and that everything will be made harder for me through the disbelief of others.

Yes, the incapacity benefit and DLA will be a problem - I've heard nothing I didn't expect regards that - the government are quick to take money from us but a little less eager to provide it. Again - that's common knowledge.
What I wasn't expecting was the outright cynicism eveyone seems to hold with regards the medical profession. I understand that 10+ years ago it wasn't even a theory let alone a recognised illness and that many of you have battled problems I cannot probably begin to imagine - but these days they ARE trying.

I seriously think If people could just get over the 'but YOU don't really get it' stage, stop dwelling on the symptoms themselves (I know THAT is easier said than done) and actually have a little optimism... I dunno - maybe we could finally start getting somewhere...

Please don't anyone take this as a personal dig, it's the general attitude I'm striking out at, not individual people, but take a look at just the last 6 months, have your thoughts and attitudes changed?
If so - for the better or worse? If not...
Why not?

Just something to think about...
*end rant*

Tuesday, April 05, 2005

Gross incompetance - the government norm.

Date: 29 March, 2005
Dear Miss Stringer

we need to check that the details we hold for your benefits claim are still right. We sent you a form two weeks ago to fill in and return. We have not had your form back. This means you need to fill in the attatched form straightaway. If you don't the benefits you get from us will stop.
This is regarding the form I handed in on the 19/03/05 in person and was given a receipt detailing said form and all accompanying evidence..
This is not the first time this has happened.

It's just so frustrating. Every time I think I have something sorted so I can move on to worry about something else, it jumps back up and does a 'you're screwed' dance whilst laughing maniacally in my dismayed face.
I mean C'mon - when you have information signed for and a receipt issued - that should be it. I should not need to go through the hassle of re-submitting, they should just accept that its been seen, otherwise, why bother issuing a receipt? It's a waste of time and paper.
But hey, I guess they need to justify their existence somehow - how else can they say they are overworked, understaffed and in need of a budget increase? Waiting lists and backlogs are the best way of putting this image across - and how else to create a backlog than through incompetence?
I have NO income besides housing benefit - they have had a letter from my GP explaining it could take anything from 1-3 years to recover and that stress exacerbates my condition. Are they trying to make me have a relapse? Do they want me to remain unable to work and living off the pitiful sum allotted by an out of touch government for even longer?
Apparently so.

And there is still no news on the incap/ income support front and I still cannot get through to the crisis loan people.
Joy. *tightens belt further*
Ok.

Had my first hospital visit today, it may also be my last unless I can borrow some money for next week since it costs me £9.30 to get a taxi there and a bus back (the only bus that would get me there in time for my appointment just went screaming past packed to the rafters with kids hence taxi)

*gets off phone*
Arrrrrrrrrrrrgh!!!!
Just managed to get through to the housing benefits unit (yup - woohoo, me's multi-tasking today, s'a good day) The guy I spoke to has told me to forget about this form, it was a request sent out automatically by the computer because the form no. had been input incorrectly by the lad at the service desk (please refer to my above comments regarding incompetence please) I just got all stressed out and worked up because some twat cannot do a simple thing like copy a number down. Great.
These days I hate talking to people I don't know on the phone (which doesn't bode well to me going back to work in a call centre anytime soon does it?!) I get stressed and wound up too easily instead of handling the call calmly and quickly. I trip over my words, muddle my sentences and generally end up trying not to cry because of the frustration.
It's embarrassing.

Definitely a good idea to start computer training asap.

Ok - back to the hospital visit.

It was both good and bad - definitely interesting though.
I came away feeling both fortunate and worried after speaking to the other women in there, Bernie especially.
Most of them have had this for years, Eileen since '95, Bernie forever - it was the look of pity on Bernie's face that did it for me when I told her I'd only had it for 6 months, when she very kindly said "Well you may be lucky and get over it if you've only had it such a short time" the inference being she didn't really believe that.

Yup, it was comforting to know that other people have these symptoms, it was refreshing for me to look at it in a new way - instead of always thinking of the things I couldn't do, to realise all the things I could.
Without exception, everyone else in that room was far worse off with this than me. Even the other ladies also able to move without the aid of a stick or wheel chair had more day to day difficulties than I have. It was very humbling - sadly it didn't do me any favours with regard the nasty little voice in my head that tells me I'm a hypochondriac, that I've taken on these symptoms through too much reading into it, through being lazy etc etc. It's my own self doubt that makes me hyper-sensitive to throw away remarks or criticism about how I cope with it.
Too much self doubt... Must work on that.

I also realised just how hard this program is going to be for me.
I am not a patient person. I am crap at knowing my own limits and even worse at sticking to a routine, both things I'm going to have to learn and adhere to.
Whilst doing the circuit training I felt fine, plenty of energy left no problems. Nothing unusual in that when you consider that it was only 12 minutes (1 minute per exercise with a minute of rest in between) but when I was walking out to the bus stop I could feel the post-exercise burn kicking in - the same sort of burn I used to feel after a 20 minute warm up, 1hr30min work out and another 20min cool down.
It just really brought home to me that I need to be more careful, when I feel as I did today - 'normal' I tend to just keep at it till I drop - then I suffer for it, the same routine all these ladies had been following for years. The fact that instead I did what I considered to be 'nothing' whilst around me these ladies were struggling to do even half that...
To me that spoke volumes.

I refuse to deteriorate to that stage.

Monday, April 04, 2005

Hereditary?

Have just got back from the hospital with mum, she's been positively diagnosed with CFS as well - except she's had it for at least the last 20 years.
Gutted? Yes and no - she's just glad she's not got MS.

Woke up in agony this morning, Stef tried the whole massage thing bless 'im, didn't work but it's nice to be coddled *grin*
I've decided I'm going to have to start the dothiepin again and hope it was that and not the acupuncture that was helping me sleep. The last week or so has been hell - just constantly tired, and the pains have been worse again. I'm almost thinking the brain fog is worth surcease of pain - almost... I hate not being able to express myself properly and sort things out - even though I'm slightly more mentally 'optimistic' about it all.
I start my 'energy for life' program tomorrow at the hospital - graduated excersize and stuff.
Here's a rundown:

session 1:
9-10 discussion of expectations and fears, symptoms associated with the condition
10-10.30 cycle of chronic fatigue/ pain and how to break the cycle
10.30-11.30 exercise session (light physio/ circuit training)
11.30-12 goal setting

Session 2:
9-10 review of goals
10-10.30 factors affecting fatigue/ pain: thoughts behaviours emotions and external factors
10.30-11.30 exercise session
11.30-12 goal setting

Session 3:
9-10 review of goals
10-10.30 advantages/ disadvantages of pacing
10.30-11.30 exercise session
11.30-12 goal setting

session 4:
9-10 review of goals
10-10.30 barriers to return to physical activity
10.30-11.30 exercise session
11.30-12 goal setting

session 5:
9-10 review of goals
10-10.30 strategies for coping with fatigue/ pain
10.30-11.30 exercise session
11.30-12 goal setting

session 6:
9-10 review of goals
10-10.30 overview of management strategies
10.30-11.30 exercise session
11.30-12 goal setting

I'm also going to be answering questionaires each week about how it's affecting the symptoms. Fingers crossed it helps eh?!

Saturday, April 02, 2005

Vitamins

I've decided that taking these supplements do help.
I stopped taking 'em for about a month, just to see (ok I stopped taking everything for about a month) and now I'm only on the Omega 3 oil, selenium+A,C and E and the Vitamin B supplements.
They don't help with the pain (obviously) but they do seem to help with the other stuff, head fog etc.
I'm going to try the Huo Zhu Wan again next week and see if that helps further like I thought it did last time, if it does then I shall not bother with the dothiepin and other stuff I was prescribed - I don't like the fact that I have to take one thing for an illness then 3 other things for the side effects of the illness medication.
I'll stick to the herbal remedies if I can thanking ye very much indeed.

I was told about another one that's sadly not available over here - Enada nadh.
Sounds good but expensive, and a bit of a bugger to get my hands on even with the internet. If the Huo Zhu Wan does the same thing then I'll just call Ben and get some more - I think I'll be able to manage £5pw for them - as soon as my benefits are sorted that is.

Right, I think I should go drink and take todays batch and have some shreddies. Food is a good plan now my appetite has returned.

Friday, April 01, 2005

I have penis envy

The last 2 days are a write off, pretty much nothing but bed because I was just in too much pain to do anything else, next to no sleep and a constant headache - joy.
I hate being a woman when it's like that.
Roll on Sunday!

food - toast. no energy to eat and anything else made me feel sick (sorry Sean, bless ya for trying though) feel better today - at least I'm out of bed.
Going to take my sick note to the benefits people as they need it for my incap claim, glad steve sent it back to me straight away, the less delay the better since finances are pretty dire right now...

todays symptoms - very weak (no surprise since i've not really eaten in 2 days and the floods are raging) headache, shakes (very little sleep I propose to be the cause) no brain fog that i can tell - which is nice, mouth and throat still sore, skin dry and itchy and just a general 'blaugh' feeling all over. Eyes are bad today though, not focussing too well.
I'm just getting some porridge, heading out with sean and getting some fresh stuff in before stef gets here tonight - he's gonna bitch at me something chronic if I don't *sigh* glad he's around to push me else I think I'd end up just wasting away in bed all day, even on thedays I'm capable of doing stuff.
Wanting to not disappoint someone is quite a powerful motivation I've found.

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.