Stress? nah.. I can handle anything me.

..Or not.

I can get myself into daft situations but just lately I've done some things that, as my best mate said, are totally out of character for me.
Dumb, stupid things that have the usual consequences dumb stupid things do.
This has resulted in me feeling incredibly crap mentally - and a knock on effect of physical nastiness kicking in too.
I've spent the last few days battling fierce headaches and odd stomach mutterings - not to mention the usual cfs aches, today it all came to a head with a complete inability to get out of bed due to dizzyness for a good 4 hours or so. I managed to move to the living room and basically mainlined water, fruit and crackers all day, that and painkillers.
I'm hoping it's the worst and tomorrow I start getting back to what passes for normal these days, the dizzyness is the worst thing to deal with and I'm so glad it's rare it happens.

Guess I should just be more careful and actually try and think through my actions and what I say instead of going with the thoughtless impulse.
*sigh*
I just wish I was fit enough to work, it gets very frustrating having no answer for the in-laws when they tell me I should be getting a job and not working for free.
I wouldn't mind if I could call my feeble attempts at web design work, but it takes me weeks to do what would have once taken me days - mainly because I'm easily distracted and too tired to concentrate on any one thing for long, I make silly mistakes which you cannot get away with when dealing with code..
It's just really getting to me!

Having work comments made by his family members makes me feel as though they think I'm living off him.
I'm not, I may not have seen a credit balance in my account for the last 3 years but my overdraft takes care of everything and I don't ask him for a thing! I don't ask anybody, I never have.

I'm just sick of it - the fact that I would own my own home by now if it were not for this illness just makes it worse, I was all set to have a mortgage when this kicked in, it scuppered all my financial plans and I just can't see an end in sight to that.
Even if I go the permitted work route it means I lose my housing benefits which would leave me even worse off than I am now once you figure in the food and travel costs a job would entail - not to mention the overriding fear I have of a relapse, I just can't shake that fear, it colours everything.

*sigh*

At least financial troubles are normal, everyone has 'em and they pass.. Eventually.
I'll have an income again one day - and it won't have the word 'benefit' attached to it!

Open mouth, change foot.

I hate that feeling when you've upset someone where it wasn't intended, I get really worked up by things like that and end up shutting off from the person and situation completely to stop myself thinking about it.

It's happened several times to me so I guess that makes me quite a thoughtless person - not something I'd have described from my self image. Sadly we rarely see ourselves as others do, I would not have guessed I can come across as arrogant either, but my best friend assures me that sometimes I do.
Everyone should have a best friend who can tell you harsh truths about yourself, it keeps you grounded.

For those of you interested in such things.. Here's the response Prof Puri has sent in reply to those VegEPA concerns:

The allegation that my published work is not authentic was so absurd that I did not feel it warranted a reply at the time. The Hammersmith Hospitals NHS Trust is unlikely to know the details, as the studies were not carried out using NHS resources. I suggest that this person or their consultant read the original papers and then tell me which data they think have been invented. If I have time, I could then personally show them the original data. If they are querying the neurospectroscopy study, I probably still have access to the original spectra from the ME patients and from the normal control subjects. If they query the beneficial structural MRI changes upon taking fatty acids, then I have access to the original brain scan data – fortunately, electronically ‘stamped’ with the acquisition dates.

It is a very serious matter to make such an allegation. A fellow medical consultant, in particular, should be very careful before alleging fraud. Also, these allegations are not just about me but would necessarily also have to include my published co-authors, who, like me, declared that the work described in each paper was carried out by us.

Methinks I opened a can of worms unintentionally there, and a feeling of impending doom crashed over me as I read it, I did not intend to cause any trouble for anyone when I voiced my concerns to a knowledgable acquaintance (who then emailed prof puri about them and sent me this response) sadly - it's looking as though that may be the case *sigh* I think I should just keep my mouth shut in future - though as I've said that many times in the past it's unlikely to happen in the future either..

I'm still taking the VegEPA's myself but I'ev fallen off the sugar wagon again and succumbed completely to the old boom and bust routine. That's the problem with doing something that involves creativity, you can't stop when the juices are flowing or you lose it.. Perhaps getting back into music was not my best plan of action at this stage of things *sigh*

Blessings in disguise

Many times I've had the thought that things happen for a reason - you know what I mean the whole 'have to have the bad in order to fully appreciate the good' malarky.

If I'd not come down with CFS I would probably have carried on working all hours and filling my non-working hours with clubbing and parties, i was a wreck, my priorities were completely skewed.. I had no life really.
Now I've got a fabulous man (who I'd never have met without the time I've had through this illness) I've started learning some new skills, I'm getting back into my music (slowly) I've discoverd more new things since meeting Stef than I'd known in the whole 10 years I was in manchester 'living the life'..
I've discovered who my true friends are, divested myself of all the 'deadwood' and generally wander around 'smelling the roses' as they say.
CFS has been good to me, I'm lucky.

Now the thing that prompted these musings today, was the lovely walk I had to the clinic for my daily dressing change.
I've been complaining for ages about my sleep patterns, I say I'll go to bed early.. But after a few days it slips and I'm back to slinking off at around 2am again, I say I'll get up early - doesn't happen, i'll lounge about and then go online, nothing gets done.. I just procrastinate because there is nothing to really structure my day around.
Not so since I had this lil bit of nastiness infect my behind *grin* talk about a 'kick' *chuckle*
I've had to be up early every day in order to shower and clean the wound before walking down to the clinic. This means I'm also getting my daily 30min walk in - all good eh?!

The thing is, once I've been up and out of the house, I feel more mentally awake. Even if I've not left the house because the nurse is coming to me, once I'm showered and waiting around for her - I see things that need doing.
I've created 4 necklaces this weekend, the washing has become less a killimanjaro and more of a molehill, the kitchen is clean, the living room is clean, I changed the bedding and even did some baking - all done over long stretches of time with plenty of rest breaks thrown in for good measure.
So I'm getting to bed earlier, getting up much earlier.. If only I could get some decent sleep life would be bloody fantastic!

nursing - the best career choice for sadists

Seriously, I've decided that the nurses at hope hospital just delight in pain - other peoples of course.

Went in for my outpatient appointment today (at the end of which I was told to make another for 3 weeks time *sigh*) The nurse glanced at the dressings I'd brought in and declared she wouldn't use the aquacel as she doesn't like using it because it can cause a wound to 'over granulate' (?) then she swabbed my wound with silver nitrate, put another dry dressing over the top and sent me off with tears in my eyes - it was burning like a fecker for the best part of 2 hours after she did that, it's only just calmed down again
"This might sting a bit" she said.. HA! try burns like a live coal has been shoved into my backside.

*sniff*

Still, it's not in need of packing anymore so all is good there.
Despite only getting about 2-3 hours sleep last night I'm feeling pretty good today, doing a clean of the house (and I'm pacing it, getting told off by Dr. Heaney is not a pleasent experience - especially when it's for something I already know!) I figured washing up, sweeping and mopping takes the place of my 30min daily walk so it's not like i'll be overdoing anything, a good 30 min rest between jobs should do nicely *grin* I'm just so glad it's cooled down, it's lovely out!

Snake oil, going cheap..

I went to a talk given by Professor Puri last night, I was actually thinking at the time of several PC salesmen I knew who like to blind you with science, Polly in particular - bloody great guy, you can have a laugh and a joke with him but you couldn't rely on him for anything resembling the truth..
Prof Puri reminded me of Polly. Great bloke seemingly, but has a tendancy to wander off topic, not fully answer questions and rely a lot on the scientific names and explanations of cell structure and brain chemistry to assure us that ONLY this product will do..

I am of course talking about VegEPA.

I've been taking it myself for about a month now, to be honest, I've noticed no real change from my previous brand of Omega 3 fish oil supplement - other than price.

I'll admit that taking some form of Omega 3 supplement seems to definitely have an effect on the CFS symptoms - I know if I forget or go a few days without them I have a full on recurrence of the aches and the brain fog - but does this necessarily mean the VegEPA is as good as he's touting?

You may wonder why I'm now questioning this, it's because I had a chat with my specialist at Hope today. It seems that he has heard of the work Prof. Puri has been putting in regarding the whole fatty acids thing, his department contacted the Hammersmith (where Prof. Puri works) in order to request more detailed information, so that they could send some samples of their own to him - the Hammersmith apparantly denied all knowledge of any such trials or experiments.

I find it hard to believe that such a thing could be published without some form of validation, but it does raise a couple of questions about why this product is being pushed so hard at us, it's unavailable on prescription and only commercially available from the one source - and as one reviewer on amazon stated:

There are no controlled medical trials quoted to back up anecdotal evidence.

It does make you wonder, Is Prof. Puri another polly? (albeit with better credentials) After sitting through his entertaining talk last night I'd hate to think so, he certainly sounded knowledgable and up front on the subject - but then don't all good salesmen?

In other news, I'm still having to undergo the arse packing procedure. Seems the healing is going well, but not as swiftly as I'd desire (so no change on the health front there then) it means even were I not at the hospital on monday I'd still have to forego the visit to the In-laws because I've got the nurse coming round to re-dress the wound all weekend.
*sigh* Hope this doesn't mean I miss out on the jazz festival too, I'll be gutted if that happens.

Bummer..

I was supposed to be accompanying the blokey down south to a family party this weekend, Italian relatives, good food.. Would have been great.
Sadly I have an appointment to see Dr. Heaney on friday and an appointment about my bum on the monday - means there's no hope of me heading down and eating myself into a coma *sniff* it's not fair.

On the plus side, the abscess is healing nicely, I can walk, sit and I'm off the painkillers (thankfully, bad enough being knocked out because of the heat without being drugged as well) the nurse who packed the wound today thinks I may not need it doing by weekend, this is a good thing - the dressing is a little uncomfortable to sit on, to say the least!

I'm still back to feeling fatigued again - whether it's the heat, the surgery or a tiny relapse I'm not sure, I'm hoping it's just the heat.. I'm always crappy when it's hot so it would mean I'm still building up my stamina if that's all it is - if it isn't, somehow I've started doing too much again.
*sigh* this pacing malarky is hard enough without all the external variables you need to consider!

On the plus side, the aches are not as bad as they usually are in the heat (though this could be down to the ultra strength painkillers I've been mainlining all week because of my backside) Still, even if I'm missing out on a party, I don't need to miss out on good company.
I plan on heading into town on saturday to catch some of the jazz festival - various members of the bury/ bolton me support group are coming down so it'll be a good chance to meet some of 'em.
That and I love me some music.. I just hope it's not raining - or too hot!

perianal is very painful

I should never whinge about the cfs aches ever again - not now I've experienced the searing agony of a perianal abscess.

It started on Thursday - I just thought it was a heat rash at first, quite a reasonable supposition given the heat and the clothing I wore that day, plus all the walking I did - those jeans chafe!
Sadly by 5am Monday morning it was painfully obvious that this was no mere rash - nor even just a spot, so an emergency Dr's appointment was made.
Within 30 seconds of glancing at my nether regions he'd stated that it needed to be 'seen to' and was on the phone to the surgeon on call at hope hospital.

By 6pm I was in the A&E reception giving my details to the triage nurse, about an hour and a half later I was admitted to a ward and put on a drip (something I never wish to experience again) then at 9.45 was told that as I wouldn't be operated on that night I could eat - so my lovely man went home, cooked me some pasta and brought it back for me.
Sadly I should probably have not bothered as at around 6am the next morning I threw it all straight back up after a nasty post-painkiller incident..

..Man, that was embarrasing!

I'd had no sleep because of the pain, they couldn't give me any more painkillers until 5am despite the fact the previous ones had worn off and I couldn't stop crying because of the burning agony in my arse. At 5am, Anne, the senior nurse on the ward, gave me some stuff that's 'just like morphine' so I fell into a drug induced doze for around 2 hours, I woke up feeling as though my life was being drained out of the drip (it was empty and no one had been around to change it) I was trying to avoid the rabbits (don't ask, like I said, it was the drugs) and as after 30 minutes no one had been to see me despite my buzzer going, I decided to navigate my way to the reception (slow going as I was dragging myself along gripping the drip carrier for dear life)

At this time, as luck would have it, the nurses were changing shift. I called out for someone to come and remove the drip as by now it was making me nauseous and in my head all I could hear were sucking sounds and the only thought I had was "PLEASE GET IT OFF ME" I must have looked a sight in my nightie hair disheveled and hanging onto my metal stand for dear life.

the first 2 nurses I appealed to just walked straight passed me, the third came over and said I had to go back to my bed and they'd see to me there, no one made a move to remove the offending article which by now seemed to be causing me undue distress, it actually hurt.
Then I started to pass out, the nurse grabbed me as my eyes rolled back and I hit the floor, I heard her call out for someone to help her, then people started trying to get me onto a chair to take me back to my bed, I managed to tell them I was going to be sick in time for a container to be thrust under my face, then I spewed up my lovely pasta meal - I remember thinking I was sure I'd chewed the mushrooms better than that..

I started thinking a little clearer after that but by then no one was listening to me, I tried to explain I couldn't sit and struggled as they tried to force me onto this chair.. To no avail - I was pushed down and the acute pain of my abscess coming into contact with the seat brought me fully out of the drug haze, people were laughing at me - I was so embarrassed.. And it still took another 20 minutes for Anne to come and remove the drip that had caused all the fuss in the first place.
I felt like an idiot!

Anyhow, then the anesthetist came round, that was probably the most pleasant part of my day.
He explained that the Dr's were being phased out of his specialty and that special nurses were being trained up to take his place, then the nurse he was training took over the conversation - she gave the most thorough run down on going under general anesthetic I've ever heard in my life - and I've gone under on numerous occasions!

Sadly this talk was interrupted by several doctors coming in to peruse my nether regions, measuring and making notes on the shape and location of my pus filled growth - I have no dignity any more, no longer need I shy away from wearing a bikini - I may even try out a nudist camp, it would be far less embarrassing than the last few days in hospital have been.

anyhow at 11am I was taken away by the lovely nurse Wilma (who had to go searching for my notes, someone had taken them off the bed and left them at reception) to go to the room they administer the general anesthetic, the last thing I remember are the words "I'm just going to inject this painkiller into your arm.. It should make you feel a little woozy" and then I was coming around in the recovery room with Wilma leaning over me removing my oxygen mask, I don't remember much of that day as I spent most of it sleeping.
Thankfully I woke up just before the drip ran out this time so I could call for assistance before it began causing me pain.

I tried to sleep the night through but one of the women on the ward was calling for a nurse every 5 minutes, I think at one point they disabled her button because then she started literally calling - quite pitifully "nurse, nurse, someone help me, please help me, nurse.." And so on, then she started tapping on her bed frame obviously trying to get some attention. So I went out to the reception to get someone for her.

I had some more painkillers and slept again, then I needed the loo - I'd been dreading this because of the dressing, I got the nurse to help me to the bathroom, she left me there and said to call her when I was done, when I went in however I couldn't help but notice that there was excrement all over the seat - I stumbled back out to reception and was ignored by the 3 staff members there so I went back to the toilet and pressed the call button. All I wanted was some cleanser so I could just go to the toilet - I was directed to the next room instead - where the seat was covered in urine - and the same blood spotted urine sample from the day before was situated under the sink in it's cardboard container.
This time I just shut the door and cleaned the seat with tissue and hand soap before lining the toilet seat with more tissue and doing my business.

I was so wiped out after that I crashed again. The whole time I was there - only the anesthetist knew what CFS was, it was completely ignored by everyone else - even the Dr asked what I did for a living after finding out I had it.

When I got up again I was directed to the shower, I asked if I could wash properly and she said that it would be a lot easier for me if I cleaned the dressing - it was not made clear that I should completely remove the dressing (and to be honest, my bathroom at home is cleaner than the ones at the hospital - I wasn't sure removing it was a good idea)

I had my shower, then had to wait again for a nurse to be free to come change my dressing - she was none too gentle about it either. I literally screamed into my pillow and couldn't stop crying for a good 10 minutes afterwards, I requested that the curtains stay closed because I was just so embarrassed about being so pitiful. You'd never believe I once did martial arts, my pain threshold now is none existent.

About an hour later I began throwing up for no apparent reason.
Turns out codeine has that effect.
I was told I couldn't go home until that was under control.. Fair enough - 2 hours later, I had it seemingly under control, asked if I could go home and was told I'd need to be seen by a Dr, then I was left alone for another hour, my blokey rang up to see when he could come get me, they told him they were waiting on my prescription being filled, when it finally came it was gone 6pm. The package I'd been waiting for consisted of a pack of codeine and a pack of paracetamol - no dressings, antibiotics, just painkillers.
I've never been so glad to leave a place in my life.

I was told that I had to go see the district nurse at swinton medical centre at 12:00 (today) to get my dressing changed. I assumed she meant my doctors surgery (poplars medical centre in swinton) and so after showering I painfully made my way downstairs and knelt in the passenger side footwell of the blokeys fiat coupe with my head on the seat for the nightmare 10minute journey, he half carried me out of the car to the reception where we were told we had the wrong place.
By this time I was in agony, nevertheless we went to the indicated clinic (not medical centre, clinic) where they also knew nothing about me coming in. I just kept on crying, I was tired, in pain and my backside was wet through from the shower (the hospital nurse said I had to try and clean before the dressing was changed)
The nurse who came through went and checked with all the teams who were left (clinic finished at 11.30) and said they thought they'd had a referral but she wasn't sure, she took me through to the treatment room , expressed disgust that I'd been sent home with no dressings, changed the one I had on with the gentlest hands I've ever experienced and calmed me down marvelously - she even managed to get me a prescription sorted for a weeks worth of dressings and organised a nurse to come to the house until Sunday.
Hopefully by Monday I'll be fit enough to get there myself without wincing with every step.

In the meantime, I cannot sit down, too much movement hurts, I've come on again and I'm dreading a bowel movement, roll on it being healed.

Now all I want to know is:

WHY ME?!

heat and ugh!

I wish the weather would settle down, it's bad enough feeling pms'y and crap without the nasty heat aches kicking in again.

I've been wondering lately if maybe the pill has something to do with cfs/ me. There must be some reason that women are 3 times more likely to come down with this crappy illness than men, I know my mood swings were worse last time I was on the pill - my libido disappeared and I ached a lot more, it worries me because I'm about to start taking it again - albeit a different type.

The problem is, I've always needed help regulating my periods - when I was a kid they'd incapacitate me for a couple of days, the pain was intense and the flow was so heavy it knocked me out.. I'm not quite as bad as I used to be but I still suffer with 'em and only taking the pill seems to help - not only does it ensure I know when I'll start and end the cycle (which is not the case when I'm off it) but the severity is lessened.

Meh, it's too hot to think and I hurt but it's a thought worth following up on.
My Dr. suggested I email Prof Puri to see if it's anything he's come across in his research - I may have to do this.

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
-- 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.