Limbo

I'm back to feeling 'off' again.

I crashed on my first night out in London, I got back from London and spent 2 days in bed. It seems that travelling like that is still out for me *sigh* on the plus side though, I managed the journey itself with no problems and very little anxiety - yey for the return of confidence!

I want to be doing things but I'm afraid of overdoing it - on the one hand I've got every Dr. I see telling me to take things slowly, don't overdo it, leave things if I feel tired etc etc etc
On the other hand I've got the guy I live with, friends and family constantly pushing me to do things - as far as they're concerned I'm so easily tired because I do no excersize, if I excersized more and built up my stamina I'd be back to normal in no time...
I'm caught between the 2. Add that to my fear of a relapse and the complete disappointment and distress I feel on a bad day or after a bad run of days... It's just damned hard.

It probably wouldn't be so bad if I had some kind of guidelines to follow - a set of real instructions from a medical professional that I could point to when I get grief off my family and say "see, I'm doing all I can, lay off"
But I have nothing. I'm on the waiting list for this CBT lass, but so far nothing - I don't even know how far down the list I am or even what it is I think she can do for me. I just have this vague hope at the back of my head that once I see her things will come into focus and I can really start to get on with my life again.
I'm just afraid that it's a misplaced hope.

In the meantime, i do nothing. I go for a walk around the shops, come home and sleep for 4 hours. I go out for the evening - the next day is usually spent in bed or on the couch. I do next to no housework and no cooking because I just don't seem to have the mental concentration required to see a task through to completion.
Lets hope these driving lessons are not a waste of time. At the very least it'll shut up the grumbling about how I should put all this time I have to good use...

updates and juicing

I'm back to mainlining supplements again, that and muesli for breakfast seem to keep me going.
Apparantly as long as I do nothing other than sit at my pc and take the occasional walk I can stay up and functioning - gives me hope that I'll be fit for a computer course or 2 soon.

I'm managing to hit the sack between midnight and 2am on a regular basis, I'm still up and down a couple of times in the night but at least I'm not having to really force myself to get out of bed even though I'm not actually getting up till around 11am.

We'll see how I manage going to London this weekend. This is the first long trip I've taken alone in a long time, I'll admit to being a little nervous but since I don't have to get off the bus until I reach my destination it doesn't matter if I crash en route. The main concern I have is whether or not I push myself too hard while I'm there, we've got a fair bit planned over 3 days - and that's not including the travelling!

If I get back and I'm still at my current energy level I think I can step things up a notch. My muscles need some kind of excersize and because I'm worried about a relapse they just aren't getting it.
I think I'll start looking into Tai chi, a 15 minute work out of that nature every day should be more than enough to build me up to a decent fitness level again - as time goes on I can just expand the work out and hopefully by this time next year I'll be well enough to take on Wing Chun again - I really miss doing all that!
Perhaps swimming once a week would help - it's just a shame there are no places open at night because if I could go for a swim around 9pm, by midnight I'd be away with the fairies!

Hmmm... Yup - a lottery win should sort that out, home with indoor pool please! (and karaoke basement...)

I'm currently looking out for a decent juicer within my price range - preferably a masticating one as they seem the best to my mind - the more fruits and veg I eat a day the better I feel, I've tried just using my food processor with less than stirling results so £100 doesn't seem such a rip off if it means I can have a 'normal' few weeks through adding these things to my diet - and buying from the greengrocers on the precinct is actually cheaper than the supermarkets - with the added advantage of knowing the stuff is locally produced and probably fresher. I'm turning into a greeny in my old age lol.

Still on the so-so...

I seem to be having an on day followed by an off day routine going, well, a half on day that is.

I'm back to being fatigued again, my headaches are back and my diet and routine are already shot to hell - which is probably why I'm feeling so crap I guess.
I know my diet affects the way I manage things but I keep forgetting to eat until I'm suddenly aware of the gnawing pains in my gut signalling an urgent "feed me now or I kill someone" routine.
There seems to be no warning - i'm either not really hungry or I'm in desperate need of food.
weird huh?!

Ah well...
I'm heading into town tomorrow to look into this 'superfood' thing, hopefully I can pick up some pumpkin seeds that haven't been shelled while I'm there.
That and buy a few more bits and pieces at the bead shop...

Pacing? Nah - I'll sleep instead

So much for my up at 9 in bed by midnight routine.
I've spent most of the last few days in bed or on the couch, interspersed with a trip to the shops or a night karaokeing. I'm just too knckered to stick to anything - how can they expect me to pace and still have any kind of life? *sigh* My step mum didn't think much of the CBT thing, she said it sounds like they think it's all in my head.
I know that's not the case, well I think that's not the case, but I hope it helps, I want to start learning web design and I need my mind back if nothing else before I can do that.

A day in the life...

I'm up! My alarm went off at 9 and I actually made it out of bed and into the shower as per timetable.
Ok, There's people out there who'll scoff and say 2Ha! I'd already been at work for 2 hours by then" etc etc etc but I don't care. By 9.45 I was eating my weetabix and sultana mix, drinking my decaf coffee and logging onto my PC.

I am tired, but I'm up and ready to commence pacing myself...
*splutter*
Yeah, right.

What I'm actually planning is to eat my breakfast, clean the kitchen because it's resembling a warzone, go shopping then bead for a couple of hours before heading over to Kay's to get ready for a night of karaoke.

Nice and restful eh?!

I'm beginning to see why Dr. Heaney gave me grief yesterday when I said I was trying to pace myself.
He says I'm doing too much in one go - I need to learn to just do little bits at a time instead of the boom and bust thing I've got going on (I.E. several days of nothing followed by one day of making up for that followed by a few days feeling crap and so on.) I know he's right but it's a difficult cycle to break - especially when me and Stef have started arguing about the fact that I do nothing around the house...
It's frustrating.
I don't want to keep blaming this illness for everything - even though it's the reason I'm the way I am right now.
Hmmm... Perhaps the CBT will help, if nothing else I could always ask to drag him along to a session so he knows I'm not making stuff up - not that I believe he thinks that, but even though he's really trying hard to - he doesn't fully 'get' what this thing is like - no one can unless they've experienced it for themselves.

Immunology and CBT

Saw Dr. Heaney at Hope hospital today, He's the immunologist speacialist there.
To begin with he wasn't best pleased at me transferring from NMGH cfs clinic as that's the recognised facility in the north west, but as I explained to him - Hope is easier for me to get to.

The upshot of it is that I'm being referred to an Ellin? Ellen? Young for cognitive behavioral therapy.
I've never held much truck with psychotherapy and that kind of thing - I can talk about my feelings and what I think they mean with my friends or just write them on my blog. But he says it's not just counselling so I guess I'll just have to see how it goes.
If nothing else it's something else to try.

I also got chastised for 'decieving' myself. I need to keep pacing myself and not doing the 'boom and bust' thing. Which is difficult, I know it pisses Stef off if I don't pull my weight and I hate feeling guilty when he does everything so when I'm well or at least not bed ridden, I try and make up for it.
I don't know how to stop doing this because I don't want to piss him off by just sitting around when I'm having a good day which seems to be what I'm being told I have to do.

Ah well, it'll work itself out - things always do eventually one way or another.

New year, here we go again...

I've cut out alcohol, I've cut out late nights, I'm struggling to at least cut down on sugar and dairy products (though as I'm not a real fan of cheese it's only cream and butter I'm struggling with) I think my immune system is actually better than it's ever been since my bloke is dying of a nasty flu and I'm barely coughing - for the first time in at least 10 years I'm not the first person to catch something!
I think that healthy eating and a decent nights sleep have done wonders for me.
OK, so I still have relapses - but it's all part and parcel of this delightful illness I know and you know that it doesn't change anything except my feelings at the time. Until I'm cured, I'm ill - end of story.
It doesn't mean I have to stop living. I get depressed, fed up and disheartened - but who doesn't?
Life's good.

I'm back to being able to do things again - not much admittedly but at least I'm not bedridden, I've been out to the pub a couple of times with Stef (I don't fancy clubbing though, it'll take a while longer to feel comfortable at the prospect of that again) and the odd restaurant with him and some of our friends, I'm looking forward to this year.

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.

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.

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.

Personality disorder? Me?

I don't think so.

Disorder	Rating
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!

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.

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!

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.

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!

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.

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.

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.

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.