All praise the mighty VegEPA!

I may be in the middle of a relapse, but I'm handling it a hell of a lot better than at any time previously. I think it has a lot to do with the VegEPA supplements.

Since I started taking them my mood swings have leveled off and Stef reckons my cognitive abilities have increased - until I became ill again and fell into this mini hole I hadn't really credited the latter observation, but now I do.
This is why it's easier to bear this time around, I can still think and communicate, I'm not just a worn out vegetable.

Yes, I'm still not at the cognitive level I would class as 'normal' for me, but it's a hell of a lot better than the level I was at when I first started dealing with this 'wasting disease'. I can write a legible sentence, a paragraph doesn't take me an hour to write and I'm not constantly referring back to my well thumbed thesaurus in an attempt to explain what I mean coherently when writing a blog post.

It's good to have the use of your faculties again, even if it's not quite the range of use you may have had previously - but then we all lose a little as we get older don't we? It's the nature of things.

I still prefer communicating via email because I can take my time to figure out what it is I'm trying to say, when I talk on the phone or in person I stumble and get flustered and end up sounding like a moron - which stresses me out; I'm not an idiot, I'm just ill.

I think I know what it's like for the lip reading deaf now - for them a conversation can only take place if they can see the other persons face and if during a chat the other person looks away mid sentence, the deaf person will miss some of what they're saying and possibly lose the context of what's being said - this is how misunderstandings arise.
It's a similar thing for me, only instead of being deaf I have lapses of concentration and when that happens it's as though I've lost sight of their face and miss half of the conversation, it's not that I'm not interested or I'm not listening, it's like I 'forget' to hear them.
When I'm like this it's very tiring to talk to people because I'm having to really work at following what's going on - it also means I'm filling in the gaps myself and so the conversation I remember having sometimes bears no resemblance to the conversation other people think we're having.

It's confusing and frustrating to say the least.
I can handle being tired now, It's taken me three years to stop beating up on myself about it. The aches are back, my throat is an on off hurty thing, but I'm not letting the tears trickle down my cheek as I languish in a pit of self pity, I have my mind and can think of the future.

This is why I've decided to start trying to sell my beaded creations on eBay.
I have problems concentrating on anything for long periods of time - the only thing that absorbs me enough is web design, but since I can't always focus on a computer screen for long periods due to the headaches it engenders, having enough concentration is not really a problem there. It'’s a challenge but I think I can handle it - I just have to try and curb my natural impatience and work within the limitations imposed by my illness.

Here'’s how I'd like it to work:

1. Remodel my site from CSS css and html upwards, make it so that my blog and the cfs site fit into it more naturally
2. Create alternate style sheets (for printing purpos, pda’s etc)
3. Create an image gallery for my beadwork (to link to eBay)
4. sort out a shopping cart and secure payment options (more hosting scripts to play with.. oh joy)
5. Take over the world

Ok, maybe #5 is a little on the overly ambitious side, but it'’d be nice if I could actually garner an income again from something other than benefits. Because of my concentration difficulties and the headaches etc, perhaps web design is another dead end for the moment, but I'm still hopeful that something will come out of this illness apart from a lot of time spent in bed or on the couch.

I hate feeling useless.

This week oive been mostly..

Sleeping.

Yup, the CFS has reared it’s ugly little head and attempted to steal my life again - this time around though I haven’t crumpled into a weeping wreck at the unfairness of it all. Stef took me into town on wednesday so I could meet up with Dawn, he’s a good lad really, there should be more about like him!

I’ve cancelled so many meetups with Dawn through this illness that I’m amazed she still bothers with me so I really didn’t want to miss this one but I just couldn’t face the bus journey - even though I’d been in bed for a good 4 hours in an attempt to gather some energy for the outing. Anyhow, Stef drove me in despite it being 5pm and the journey back was likely to be murder for him, I got there not long after she did and we went in to watch a cracking film.

I definitely recommend ‘The Holiday’ to anyone who likes a film that makes you laugh, cry and wince a little at the outright stupidity of some people..

Anyhow, I made it home and basically collapsed, but it was worth it. I do love a good film, and seeing Dawn is always fun.

I've also decided that I'm going to start beading in earnest and attempt to sell my creations on Ebay. I figure if I can at least make back the amount I spend on making the stuff I'm ahead of the game, at present I make things and then give them away - I can't afford to do that anymore.

I have the webspace, I have the knowledge so there's no reason why I can't take photographs of everything I make and store my 'catalogue' online and allow people to pick and choose what they want from me, I can even make 'em to order should it be required - beading is something I can do when I'm too tired to do anything else and it doesn't matter if I leave mid stitch to crash, I know I can carry on when I wake up.

Speaking of which.. I need to go crash, we're supposed to be going out for a curry with friends tonight, I'd really like to not have to beg off again - it's been so long since I had an opportunity to get dressed up and look a bit more glam than a used up dishrag!

Relapse city, population: ME.

that's right people, I'm dead as a dodo again. no energy, no enthusiasm.. Quite frankly I couldn't care less about anything right now - just as well someone else is coming to sort out my dla and finances or i'd sit in bed and starve (if stef would let me)
speaking of bed..

The exorcist strikes!

I was sat quite happily watching TV on Thursday night when the queasy feelings started, at first I tried to ignore them and concentrate on my program but by 10pm I'd had enough and decided to go to bed and try and sleep it off.
By 10.30 my head was down the toilet as I contemplated the contents of my stomach.

Stef came home at around 11.30ish and soon had me set up in bed with a bucket, a glass of water and a looroll - the bucket was emptied twice and he hasn't stopped commenting since on the radioactive shade of green my stomach lining comes up as.. I was not a healthy bunny.
My temperature must have been off the charts - but I wasn't sweating. I was unable to stop retching even after there was nothing left to produce - it wasn't fun, at a couple of points in the night he asked me to go to the hospital but I knew it'd stop eventually - and I couldn't face the journey there or the wait in A&E once we got there.

Anyhow, by some godforsaken hour of the morning on Friday I finally managed to fall into a fevered doze and hold down a full glass of water.
Sadly when I woke up it was with blocked sinuses, a throat that felt like it'd been scrubbed with a wire brush and just that general all purpose 'man I feel crap' sensation of having the flu.

Since Friday I've alternated between waking and sleeping - light sensitivity and headaches have been the least of my problems, I've practically none stop sneezed (3 rolls of loo paper I've used!) and I swear at some point I must've hacked up a lung.

what's more upsetting is how far back it's knocked me physically - it's pretty much exactly how I felt when I was first off work with 'an unidentifiable malaise' before they diagnosed me with cfs. In the course of 4 days I've gone through the first 3 months of my illness again - and it sucked!

I'm obviously starting to feel better today, I've managed to eat something other than watermelon without feeling even slightly nauseous (touch wood) I can talk coherently and it's not taking me three hours to conjure up a paragraph of writing - you don't know how frustrating that was - especially yesterday when I was venting my frustrations at the governments latest financial set back for me.

I was roused out of bed by the doorbell (or so I thought, just ear the infection ringing again) but when I saw the letter from the dwp I assumed it was informing me I need to re-do my claim soon.
If only!
Imagine my shock as I opened the letter to see the words:

ABOUT THE AMOUNT OF £650.79 THAT MISS VJ STRINGER STILL HAS TO PAY

After the first initial panic cry I sat and thought 'hang on, this could be one of those phone scams..' so I booted up the net and checked out the phone no. Nope, no joke - therefore it had to be a mistake because I have no debts other than my overdraft, I'm very careful to ensure everything is paid up on time and in full - where I'm aware a debt is owed at any rate!

I rang up the 0845 number on the letter and sat in thequeuingg system for about 30 minutes before I got through to a lovely lass called.. um.. Jeanette orJacquelinee - sadly my memory is pants and I neglected to write that down..Oopss..
Anyhow, she managed to tell me (after a little checking back) that the reason they are taking a third of my benefits off me each fortnight is to pay back overpayments over the last 10 years.
That's right TEN years.

From 9/9/1996 - 18/5/1997 they say I owe £575.83
From 18/9/2000 - 9/10/2000 they claim I owe £129.96

Now, Not only do those two sums not add up to the total amount the letter said I owe But how am I supposed to check this is even right? Lets face it, only an idiot would trust the governments record keeping - added to the above example; the time they suspended my benefits until I could prove where the amount from a cheque I deposited into my account came from - it was from them, back dated from their last record keeping error!

To get back to my point though - how on earth could I prove this is a debt I do not owe? For one thing, as far as memory serves, I've never had income support, which what they say the second amount is for - never mind between those dates!
Sadly I've only got my cv as proof of the job I had at the time, I'm not one of those really organised people who keep payslips forever.
I can't even afford to get my statement copies from the bank - even If I could - I don't have the concentration to go through all those transactions looking for some kind of proof they're wrong.
Basically I'm screwed.

I was just about keeping my head above water before - now.. Well, best case scenario is that I only have to pay if for a month or 2 until she can get this form to mapparentlytly the lass I spoke to has to get my file sent to them before they can request a form sent out to me, so it'll be at least 4 weeks before I can even think about receivinging it) once I have this form I'm to ring them and go through all my expenditure and hopefully they'll stop taking a third of my income.
Until then.. Well lets just say I'm glad Stef won't let me starve!

I'm going to have to stop buying in the supplements though - I can't drop my mobile because I'd renewed the contract before this letter came so I'm tied into that for another year.. Basically there's nothing else I can cut out - I was subsisting on the bare minimum anyhow, now my overdraft is the only lifeline I have - and that was already being stretched more than I liked, now I'll get to see the limit with no hope of paying it back *sniff* Me no like this!

I'm going to the doctors on Tuesday ( it was the earliest they could fit me in) so I'll see if he has any suggestions regarding my supplement loss but I can see another rapid loss of all the improvement I made this year - and there's nothing I can do about it!
It makes me so mad..

But what can you do eh?!

MMmmm cinnamon bagels..

The nausea has gone!

*grin*

This makes me a happy bunny - can you tell? Ok, the beds still uncomfortable - but it's old, the aches are still there - but it's cold and therefore to be expected. The ear infection is still very much in evidence - feck it.
I'm mobile again.

I went into town yesterday to meet up with my gran for a drink and a chat (she's nuts, they say laughter is the best medicine right? In that case I demand my gran as a nurse) it's the first time in weeks I've ventured out alone on public transport, ok so I crashed as soon as I got back but it was worth it.

I'm back to being able to use the pc for more than 10-20 minutes at a go, this makes me very happy, perhaps now I can get on with writing those articles for the mefreeforall site - not to mention the stuff I still need to do for my info site. I want to sort out some new css layouts and there's still the stuff under construction to see to.. oh yes I'm a busy girl - in my mind..

Atchoo..

I've been to see the doc today, clutched in my frozen paw as I left was a prescription for a new inhaler. Joy..

He's a top bloke my doc though, he never makes you feel like a waste of space - he actually makes eye contact with you and listens sympathetically to everything you say - no nonsense about him at all, just friendly professionalism.
*sigh* I do wish there were more around of his ilk!

ANyhow, it seems I do now have inflammation in my ears and he reckons I definitely have a dust allergy, I've been referred to an ENT specialist (ear, nose and throat) at hope hospital (and we all know how much I love going in there..) normally I'd have laughed when he said it's likely to be a 6-8 week wait, lets face it, most things will have cleared up by then but I've already had this for over a month and it's just getting worse and exacerbating the cfs crap with it.

I guess I'll just keep being manky and crap and take it as easy as I can, I'm pissed off though - I'm getting ulcers again, shows how run down I am - I hate mouth ulcers!

Asthma: the return.. Dan dan daaaahhhh...

Yup, I've been dizzy and sick and generally unwell and tired - I've been putting it down to this ear infection but tonight I realised i was actually having an asthma attack - it's been so long since I last had one I'd forgotten the signs, now I realise I've been struggling with it for the last 4 days at least.

Thankfully I found an inhaler that's still in date (and 2 that are over a year out of date) though my most recent one seems to have vanished into the ether, not good.

Once again I'm blaming my latest trouble on the guy downstairs. Not only does he disturb my sleep but he must smoke upwards of 60 a day, surely he does - why else would it seep so insidiously into our flat? All we can smell is cigarette smoke, it's getting into everything - and it must be bad if my boyfriend is complaining about it too, he does not have the strongest sense of smell in the world (well, not compared to me at any rate)

The asthma making a reappearance is a blow though, it's something that used to trouble me a lot as a kid - but then my mum smoked like a chimney - as did all my aunts and my brother, I never did, I like to think of that as an intelligent decision on my part. The thing is as soon as I left home and had control over my environment, the asthma tailed off, the only reason I have an in date inhaler is because when I first came down with cfs they gave me some painkillers whose side affects were asthma so I also got a load of medication for that (gotta love it, pills upon pills upon puffers) unfortunately the one inhaler I've found actually ran out of date 4 days ago, here's hoping I find my newest one soon. I'm sure this'll be alright for now but I'd rather not risk using it for too long if I can help it.
Meh, I'm seeing my doc on Tuesday, I'll get him to check out my ears and do the puffer test to see if I need a new inhaler (I'm hoping not since I'll have to pay for the prescription as there's still no word on my HC1 application)

I really hope we find somewhere suitable to move soon.

At the sound of the beep..

My ear infection seems to have mutated from an annoying 'water in ear' sensation to a slight case of tinnitus, and it hurts.
i get an occasional twinge (that feels like someone stabbing needlethin icicles through my ear drum) that lasts from an instant to several seconds at a time. I think I need to go back to the docs about it.
I'm also back to the really sucky low energy levels and acheyness, the bed feels more uncomfortable than ever - I wake up feeling as though I've slept on rocky ground not a mattress, and I'm just so tired it's making me narky and miserable when I'm not just crashed out on the bed or sofa looking like I've forgotten how to smile.
Bless 'im though - my mannums is putting up with it, he gave me a massage and ran me a bath this morning, I've just spent the last three hours soaking in it, not much of a relief sadly but at least when I'm in the bath I can shut up the little voice nagging at the back of my head saying I should be doing something.

I'm worried about money - again.
I know my current incapacity claim runs out on January 7th, I can't help wondering what I'll do if they refuse a new claim. I'm still at the same level of fitness I've been for the past 8 months or so - well, if you discount my current mini-lapse.
But that's the thing, I'm not getting any better - I've finally hit the proverbial glass ceiling, I'm well enough to bimble about (current crappyness aside) but I'm just under the threshold of being fit for work - even part time stuff feels beyond me at present.
Stef keeps telling me not to worry about it but I can't help it.
I know beating myself up about things is bad, but I can't stop.

I worry about how his folks view me, I worry that he will get sick of covering me for things - I now owe him a fair bit of money - something I never wanted to do. I just can't let those sort of things slide, maybe I'm too proud, money has always been a big deal for me - I hate owing people and I have to be seen to be paying my own way.. Something it's getting increasingly difficult to do.

I'm also sick of living here, It's saying something when even Stef's fecked off with the cigarette smell emanating up from downstairs, with my ridiculous sense of smell it's no wonder I'm cranky and nauseas a lot lately. That's aside from the stress created by the downstairs neighbour.
I just can't wait for this year to be over and us to be out of here living somewhere quiet, out of the way and peaceful - maybe then I can let myself relax a little, if I'm not surrounded by people and I'm somewhere that feels like it's a holiday, maybe I can quit putting so much pressure on myself.

Relief and resignation

I've been 'off' for the last 2 weeks or so, I've spent more time in bed or on the couch than I have in months, the headaches and muscle/ joint aches have to be felt to be believed. At first I thought it was maybe post-holiday blues, then I thought perhaps it was down to not having enough vegepa, then I just didn't care because I felt crappy and everything hurt.

Well, it turns out I'm not in the throes of a relapse (thank god) I've just had a viral infection.
I went to see my Dr today to check out my ear because for the last 3 weeks at least it's felt like I have water trapped in it and it's been driving me nuts. He had a looksee and said, nope it's incredibly clean - there's just traces of scarring from a viral infection, that should go soon.
He offered me steroids etc to help with the clear up but I declined, it's going all by itself and if I start taking more pills and potions it'll upset what passes for a balance in my system.
Thankfully he agreed that this was probably the best course of action.

It's definitely served as a reminder though, I really don't want a relapse. I'm sick of feeling lazy and useless - I've been getting back to a stage where I can at least do things around the flat, I'd rather not end up back in bed whimpering pitifully because everything hurts and I'm too tired to do anything about it.
I just wish I could tell when I'm ill as opposed to just thinking it's this delightful disease flaring up again - it's like constantly having a mild viral infection sapping your strength, this means when I get an actual virus, I can't tell the difference!
Still, it could've been worse. At least I can still get up and move around even if I feel tired and achey, I might've ended up having a total relapse and needing stef to carry me to and from the bathroom again *shudders* not if there's truly a god I won't!

cancelled talks and oh.. it's been a while.

I went to a talk today at stockport, as I wrote here on my main blog, it made little sense to me, but still remained interesting.

I've reached a plateau, or glass ceiling - whichever term fits.
I can get up and bimble about all day doing not very much of anything, but I still get tired. I can talk fairly rationally to people, i'm accustomed to struggling for words now so I can gloss over those moments almost unoticably and still get my point across. Yet i'm still not at a level acceptable for employment.

It's frustrating. Yes, I guess I have quite a good life all told, I get up when I want (though I do try to keep a schedule, with no incentive to get up it does slip) I do practicaly anything I want - as long as it's cheap (or better yet, free) but the things I REALLY want to do (buy a house, start a family) I can't do because unless I can get back to work it will never be financially possible.

Sure I could have a child now, but it would not be practical, I'd be too tired to deal with a baby, especially when stressed, which living here I would be - a one bedroom flat is no place for a family to live! Swinton itself has become a source of distaste for me, I just cannot wait to move to somewhere I don't have to constantly hear police sirens and abusive language, nor feel the need to use that language myself in order to be understood!
A place where I can go for a walk and not be confronted by gangs of kids, a place where we have space to breathe - and space to live.
I want a garden so we can grow our own herbs and vegetables - most importantly, I just don't want to be here.

sniffles and feeding

I've been fighting off a cold lately, explains my lack of energy.
Since discovering watermelon I've turned into an addict, not only does it quench my seemingly never ending thirst (for about 15 minutes) but when I eat as much of it as I have been doing, it helps stem the mucal tide, must be all that vitamin C it contains..

I've also been suffering with a dull ache and intermittent pain flare ups in my lower back fillings, my HC1 certificate ran out though and I forgot to chase it up when the guy neglected to send me my application form to renew it *sigh* my own fault.
I need to get that sorted before I can get treatment though, I have no money for anything over my current expenses, christmas is going to be fun - as daddy dearest said just this morning:
"It's only 10 weeks away"

Isn't he lovely? *kill*

L'italia e fantastica!

I had a wonderful holiday in italy when himself took me over to meet the folks. I managed the heat without succumbing to the aches, I felt awake and 'with it' despite not sleeping very well (though the siesta's may have had something to do with that) but now I'm home..

I dunno, was it the weather, the food, the fact I wasn't in swinton?
Either way, I felt happier and healthier there than I have done in a long time, and this was even during the run up to my period - notoriously the one week a month when himself runs for cover!

I kid you not, it was as though the cfs took a break while I was there.
To be honest though, the way I feel now could be put down to the fact I miscalculated my supplements and ran out with a week to go till I came home, at least now I know the VegEPA make a noticable difference and it's worth me spending the cash on 'em.

Seriously, even with all the exercise I did over there (and amazingly enough, having a siesta every day meant I was only as tired as everyone else and not in any danger of crashing out for a change)
I can't do that here though, I just can't relax enough - over there it was too hot to do anything but sleep, here.. it's too noisy, and I feel guilty for sleeping in the day.

The other strange thing is that the night we got back, I had trouble sleeping because my legs felt wierd - it was like the blood was bubbling up inside them, it actually hurt a little and my circulation has gone to pot again.
I've been unable to sleep properly at all since we got back. I can't get comfortable in bed, I can feel every spring in the mattress, I'm too hot then too cold, every noise wakes me up when I do doze off..
It's driving me nuts.

I keep telling myself that it's not because I've been overdoing it, but a little part of me can't help but wonder. I want to move away from here, I've now seen what a peaceful environment could do for me and Swinton is definitely not a peaceful environment. Screaming neighbours and constant police sirens do not lead to tranquility in your surroundings!

Besides, I want to look out of my window and see trees and flowers instead of gangs of kids.
Also having a little more space would be beneficial, being in each others pockets 24/7 is not healthy. This one bed flat was not designed for a couple.

I think I'll just go off and dream a little about the vatican floor mosaics again - it sure beats my fruitless search for a job.

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.