VegEPA and the ongoing nightmare

I've been taking these VegEPA supplements for a month only to realise I'm taking the wrong dose, I'm supposed to take 7-8 capsules a day, I've been taking 2.. Whoops.
The thing is, they're expensive - I've been sent a pretty in depth booklet from the Manchester ME society and the results and feedback on this supplement look promising, it's just another expense on top of everything else, though if they do work as well as is claimed then they get priority over my driving lessons that's for sure!

My website (rosevibe.me.uk/cfs)is about 70% done but I'm having to take a break from it, the brain fog is kicking in again. I can tweak it but I'm so easily distracted that evry few minutes i'm either getting up and bimbling around or I'm just flicking between the pages without really seeing what it is I'm looking at.
It's frustrating, I want to get it done.

I'm also gutted after speaking to one of my favourite cousins earlier this evening, she didn't know I had CFS (I tend not to talk about it if I can help it and most of my family have no clue that there is anything wrong with me never mind what it's called, comes in handy having very little contact with anyone sometimes)
The thing is, it sounds like she may have it - this sucks big time, she's a lot younger than I was when I came down with this, she's just started mapping out her life, this'll fuck things up for sure if it turns out to be what's wrong with her.. I'm not a religious person but I'm praying like anything she's just sick with some virus that clears up in another couple of weeks or so.

Oh and the nightmares are back - I actually woke up screaming this morning.
I dreamt that I'd gone to pick up a glass from a table, the glass was beside a potted yukka plant, as I reached for it I noticed what looked like one of those tendrils of fibre optic wire you get in a spaceship lamp, pushing it's way out of the plant.
As I watched another then another joined it until I realised it was a spider (I'm terrified of spiders) I backed away, knocking the table - my stepmum was behind me laughing and telling me to run away, it just kept growing more and more legs and as they grew it started to look like a transluscent one of these balls but with the 'legs' as fine as hair:

Anyway I'm still backing away but now I'm running backwards because it's started coming towards me and it's growing larger the closer it gets to me, I stumble and it hits my knee.. I scrabble backwards but it's run up my body and as it jumps onto my head it lets out this weird high pitched giggling sound..

That's when I woke up screaming and thashing about in bed.

*sigh* I'd love a decent nights sleep, even if it's not all night, just a few hours of deep refreshing kip would be fantastic!

Bloody weather!

I do not do well in the heat.
Mind you - I'm not so great in the cold either *grin* but at least if you feel cold you can put on more clothes or turn the heating up. When it's like this there's nothing you can do. Heat makes my aches worse and my mood is basically terrible.

I'm so irritable it's untrue, my poor man! I think he's glad of the world cup, not because he loves his football, more because it gives him an excuse to leave me on my own for a few hours.
I'm not a nice person at present.

I know I get narky when the aches are really bad anyhow - but when it's this hot as well *sigh* on the plus side, I've done a shed load of washing today - it's practically dry the second I hang it on the line, so there are good points lol

My thought process is very disjointed too, I'm only half catching what people say, which doesn't help when I'm queen narky, i take everything the wrong way..
*sniff*

I'm still improving though. I always used to sleep more and do less when it was warm so my current state is NOT a set back, it's normal - and not in a 'these days' normal kind of way, apart from the aches, this is how I was pre-illness, so it's kind of nice.

Ugh, how irish was that last bit?
Anyhow, I'm just glad I've got my projects to work on *grin* my cfs website should be fired up and ready to go by next friday (assuming there's no problem with the ftp process..) Once that's had a couple of people give it the once over and a thumbs up, I'll announce its presence to the world at large and stick in a few meta tags for google and co to find.

Compiling the content has kept me sane actually, it's helped focus my mind with regards what I need to be doing to help my 'recovery' and it feels like I might have done something worthwhile with this course instead of just messing about with code.

Feck feck fecking fecking FECK!

I've overdone it.

The last three days have just been crap. It's been building up for about 3 weeks, I've been getting gradually more tired, my sleep has been less restful and now I'm back with the constant pain and the sore throats - at least the headaches are only intermittant.

So it's a good job I'm on half term from college with only another 3-4 weeks to go when I go back. I don't know if it's the travelling that's done it - or perhaps it's the length of time I'm concentrating for, the fact that I've started drinking tea and eating a lot of dairy products again - or even that I had a big drinking episode around my birthday.
Either way, I've been slacking on the food and pacing front and now I'm feeling the consequences.

I'm just sick of it, at least when I'm just 'tired' (like that word can even begin to convey the feeling) I don't care, I just want to be in bed or lay down somewhere.
But the aches... they sap your will to live. Trying to not make the bloke feel rejected is a strain, it hurts to sit in a single position for too long, I can't stay cuddled up when lying down... everything just HURTS! trying to stay pleasent and 'normal' is just more hard work and adds to the general crapness of it all - and I can't even talk to him about it because he just tells me to shut up and stop being negative.

Like that helps.

Gah! I'me feeling sorry for myself so it's probably time I fecked orf to bed and attempt to get some decent sleep for a change. Doing more than dipping in and out of a doze would be fantastic! I was doing so well, it's my own fault for rushing it though - a realisation that does not bring a smile to my face.
Oh aye, that therapist is gonna have a field day with me next week.

Life... S'good innit?

I spent most of last night searching for lyrics on the net.

It's good feeling like I have a life again, I've started 2 courses to help further my interest in web design, one that takes up all day tuesday and one that's on a thursday evening, I still have a driving lesson on a monday and wednesday and now I'm looking at jamming with a band on monday evenings.

The only problem is that in doing all this I think I may have bitten off a little more than I can chew. For the first time in a long time I totally passed out in the bath on wednesday and Stef had to call off my driving lesson because he couldn't lift me out of it, I ended up lying there covered in towles for 2 hours - the git even took a pic *grin* men...

I've also had the aches back in full force for the last 2 weeks, my left arm especially is just killing me, I've been having trouble sleeping again and I'm starting to feel constantly tired again, my memory is still swiss cheese - hence the lyric search.

That's stung my pride a little actually - if there's one thing I've never had a problem with it's remembering lyrics, not anymore, now I even feck up 'living on a prayer'!
It's frustrating as hell.

Though I guess it's my own fault, I'm cancelling the wednesday driving lessons so I can fully recharge from a day at college and fridays will probably also be spent just resting. I'm beginning to think my shrink was right and that I should just stick to 2 hrs a week of study (though I'd love to know where you can get a course that offers just that, 4 hrs is the shortest I could find and I'm doing that on a thursday)

It's just that I'm so impatient - I need to get back to work again - my DLA has been taken from me and the appeal went nowhere, there are so many things I want to do and this 'taking it slow' doesn't work for me.

Well, not mentally anyhow.

I just hope that I manage to pass my theory test on friday.

Dr Myhill sounds like a knowledgable chap.

I was sent this link via one of the lasses in the support group, I cannot disagree with a single word of it.

CFS psychological or physical?

This seemed such a stupid question that I never bothered to consider it. I estimate I must have now seen over 1,000 patients with CFS and it is clear CFS is primarily a physical disorder. It is only when patients have been ill for several months and been told by their physicians that nothing is wrong that they get secondary psychological problems. The only place where CFS does not exist is in the brains of small-minded doctors.
The reason the "physical or psychological" debate continues is because the usual tests for pathology come up showing normal results. GPs find ill patients, do the usual screening tests which come up normal and feel this allows them to turn round to patients and conclude there is nothing physically wrong. If, however, the screening tests included SPECT scans, sensitive tests of the hypothalamic-pituitary-adrenal axis, T cell subsets, biopsies to look at mitochondrial abnormalities, enterovirus sequences in muscle and brain, trace element levels, vitamins, essential fatty acids and amino acid profiles, then lots of abnormalities would be found. Doctors would diagnose serious metabolic and hormone problems and patients would be taken more seriously.

I believe the fundamental problem in CFS patients is that they have lost their ability to respond to stress, be this physical, mental, nutritional, emotional, infectious, financial etc. Our systems can be likened to a car - when we are pottering, we are in first gear. But as soon as the pressure goes on, we need to move up a gear or two, or three gears, or occasionally into overdrive, to cope with the situation. We can do this by releasing stress hormones from the hypothalamus, pituitary and adrenal glands producing adrenaline, cortisol, sex hormones etc. This effort can be sustained for a short length of time but eventually the person must "recharge the batteries" with good food, holidays, fresh air and sleep.

A CFS patient is burnt out - usually by overstressing him/herself with work, sport, family commitments combined with insufficient rest, poor quality food, allergies, acute or chronic infections, excessive alcohol/smoking/sugar, chemical overload etc. He/she has lost the ability to produce stress hormones and is stuck in first gear. Increasing stress (accelerator pedal) simply makes the engine scream without going faster. Furthermore, the patient often does not sleep well and this compounds the problem. I could stock a good Olympic team with CFS sufferers - top athletes stress themselves hugely and put themselves at greater risk of getting CFS.

With any illness there is a psychological component, but with CFS this is secondary to a physical illness. I am always amazed how well adjusted are my CFS patients and depression is not a common feature. The difference is that CFSs want to do things, but if they do they feel ill. They also tend to wake late. With depression, patients don't want to do anything, but if you push them to exercise, they actually feel better. Usually they have early morning wakening. I suspect this is why the "stimulating" antidepressive drugs seem to make CFS worse - they increase the desire without improving the performance and therefore worsen the frustration.

This describes my general state of mind perfectly. I also know that graded excersize and low level anti-depressents do nothing for me except worsen the symptoms - just as he says. This is why I'm now a little concerned about the CBT I'm undertaking.
On the one hand I do have a lot of issuse I need to resolve and I think this lass may be able to help with that, but as far as the CFS itself is concerned, I don't think it will have much of an effect.

Cognitive behavioral therapy

It seems I need help.
I got to the hospital well ahead of time, even had to wait for 15 minutes past my appointment time, but the lass I saw was lovely. A bit too easy to talk to actually - if that's possible for someone in her line of work.
BAsically I'm going into therapy for a few 'issues' I have, things I've never really dealt properly - I've always had a habit of 'forgetting' things, tucking the bad stuff away into a little box and chucking it into a very deep well at the back of my mind, sadly with all this time on my hands all the bad stuff keeps coming back to haunt me - so we'll be adressing that in the hope it stops the nightmares.
She's also got me keeping an excersize diary. I'm to go back next tuesday with it and she's going to help me decide on a decent programme/ daily pacing method. In the hour I was there we barely scratched the surface of my problems but I'm optimistic that if nothing else at least I'm finally doing something!

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
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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.