The times have thoroughly redeemed themselves after most of us wrote in to them about their take on CFS.
It's kinda nice to think that perhaps we did have something to do with that article being written, you never know, maybe we did.
It's funny though, reading the part at the end of the article about a personal experience has led me to realise something.. I too have dry itchy eyes just before a bad bout, I thought it was just that dehydration was a result of the cfs kicking in badly - but I have to wonder.. Do I get a really bad time of it when I'm more dehydrated? is dehydration a cause rather than a symptom? i fely great in Italy, but I was drinking a hell of a lot more water over there than I was here and I was taking an afternoon nap every day..
Who knows? I may have to ask my specialist - assuming I ever get to see him again, I'm thinking of asking my doc if he'll refer me to the clinic all the bury/ bolton lot go to - i'm guessing he won't be able to because of cachement areas etc but it's worth a try..
Monday, January 22, 2007
Thursday, January 11, 2007
And a rant
I've already vented my spleen over here
feel free to go and have a looksee and express your disgust alongside mine.
feel free to go and have a looksee and express your disgust alongside mine.
Wednesday, January 10, 2007
Aaaaaaaaaand.. crash.
Yup, today made up for whatever wakefulness I've had - I got out of bed at some stupid time this morning because I just couldn't get comfortable and gave up lying in bed tossing and turning and slept on the couch, at about 12ish Stef came in and tried to get me to move; wasn't happening.
I finally managed to get up at 3.15pm, had a shower and basically monged about since then - can't wash my hair though *sniff* it's manky as sin but I'm not allowed to get water in my ears and I've not got any cotton wool yet to plug them with - it's driving me nuts!
On the plus side - while I may be physically whacked today, I seem to be mostly there on the mental front.
Makes a nice change lately.
If only the painkillers were working *sniff*
That aside, I need to rest, I've got another band rehearsal tomorrow night that I need to be fit for - it seems we're doing our first gig on march 3rd and so they've upped the tempo on me to 2 a week (and lets face it, we need the rehearsals!)
I'm just a tad worried about how this will affect me though, after just 4 songs last night the shakes kicked in and I ended up sat on a chair for the rest of the practice session - this does not bode well for a kick ass rock show and it really doesn't bode well for the next month or so, I'll pace it of course, but it means instead of losing 2 days to resting for rehearsals I'm now losing 4 so apart from mondays that's my week sewn up (I don't like to go out at weekends if I can help it, I don't handle crowds too well) and then there's the stress of the performance itself..
I get nervous enough about going on stage when I don't have the image of a very public crash at the back of my mind - I'm thinking a few calming techniques are needed before then. That and a back up singer.
To make matters worse, they're talking about buying a new mixer for the band, i hate that I'm not contributing my share - they pay for the rehearsal space and any drinks, I get chauffered to and from the place and now they're buying more equipment. I'm such a scrounger!
And no sign of a response to my DLA claim yet.
*sigh*
I need to start selling things soon, it's my only financial recourse.
I finally managed to get up at 3.15pm, had a shower and basically monged about since then - can't wash my hair though *sniff* it's manky as sin but I'm not allowed to get water in my ears and I've not got any cotton wool yet to plug them with - it's driving me nuts!
On the plus side - while I may be physically whacked today, I seem to be mostly there on the mental front.
Makes a nice change lately.
If only the painkillers were working *sniff*
That aside, I need to rest, I've got another band rehearsal tomorrow night that I need to be fit for - it seems we're doing our first gig on march 3rd and so they've upped the tempo on me to 2 a week (and lets face it, we need the rehearsals!)
I'm just a tad worried about how this will affect me though, after just 4 songs last night the shakes kicked in and I ended up sat on a chair for the rest of the practice session - this does not bode well for a kick ass rock show and it really doesn't bode well for the next month or so, I'll pace it of course, but it means instead of losing 2 days to resting for rehearsals I'm now losing 4 so apart from mondays that's my week sewn up (I don't like to go out at weekends if I can help it, I don't handle crowds too well) and then there's the stress of the performance itself..
I get nervous enough about going on stage when I don't have the image of a very public crash at the back of my mind - I'm thinking a few calming techniques are needed before then. That and a back up singer.
To make matters worse, they're talking about buying a new mixer for the band, i hate that I'm not contributing my share - they pay for the rehearsal space and any drinks, I get chauffered to and from the place and now they're buying more equipment. I'm such a scrounger!
And no sign of a response to my DLA claim yet.
*sigh*
I need to start selling things soon, it's my only financial recourse.
Tuesday, January 09, 2007
catching up
So last night I think i maybe got an hours kip, i'm buzzing like a buzzy thing and having trouble..
doing whatever, can't find the words i need and it's pissing me off.
To pinch a paragraph from my main blog:
someone’s flicked the power switch again and i’m on full pelt, adrenaline overload - my system is buzzing like a buzzy thing and it’s not good - it means either later today or for most of tomorrow I will crash, hopefully not today as I have a doctors appointment at 4.25 and i’d like to make this one - the last one never happened because I couldn’t get out of bed.
There was newspaper snippet passed round the bury/bolton support boards on sunday and a few of us have responded in e-letter form in the vain hope someone takes notice, I won't hold my breath - but it'll be interesting to see if something is said.
I need to try and focus, can't go to the docs like this - how can I tell him what I need to if i can't figure out what it is I need to say? gah! I hate this thing sometimes.. actually I hate this thing all the time, i just try not to think about it as often as possible, that's probably why i'm on 'hyper' it stresses me out - especially with regards finances, I still haven't contacted the social about the amount their raping from me each fortnight, i just can't focus enough to communicate with someone who doesn't know me - i sound like a complete idiot on the phone, maybe i'm more sensitive about it because i used to work in a call center and i know the mindset of the operators, whatever the cause i hate to sound like a tit.
doing whatever, can't find the words i need and it's pissing me off.
To pinch a paragraph from my main blog:
someone’s flicked the power switch again and i’m on full pelt, adrenaline overload - my system is buzzing like a buzzy thing and it’s not good - it means either later today or for most of tomorrow I will crash, hopefully not today as I have a doctors appointment at 4.25 and i’d like to make this one - the last one never happened because I couldn’t get out of bed.
There was newspaper snippet passed round the bury/bolton support boards on sunday and a few of us have responded in e-letter form in the vain hope someone takes notice, I won't hold my breath - but it'll be interesting to see if something is said.
I need to try and focus, can't go to the docs like this - how can I tell him what I need to if i can't figure out what it is I need to say? gah! I hate this thing sometimes.. actually I hate this thing all the time, i just try not to think about it as often as possible, that's probably why i'm on 'hyper' it stresses me out - especially with regards finances, I still haven't contacted the social about the amount their raping from me each fortnight, i just can't focus enough to communicate with someone who doesn't know me - i sound like a complete idiot on the phone, maybe i'm more sensitive about it because i used to work in a call center and i know the mindset of the operators, whatever the cause i hate to sound like a tit.
Friday, January 05, 2007
Ear infection? Here, spray this.
I went to see Mr Willatts at the ENT clinic today, apparantly I have an eczma like substance in my ears. I've never had eczma before - what a horrible place to get it.
Anyhow, I've been given a spray to use three times daily and instructions to give my GP a copy of the prescription as I'll need to keep it up for a while *sigh* I wouldn't mind but it smells like photographic developing fluid and it's uncomfortable to say the least, I'm not supposed to get water in my ears and then this spray fills me up and leaks down my neck *shudders* and it sort of burns - not in an uncomfortable way, more like it's stimulating my inner heating system, still, as long as it gets rid eh?!.
*grin* just looked up the active ingredients in the spray - apparantly it's used for difficult ear infections especially in dogs! LOL
That's tickled me that has. Ah well, maybe in my next life I can be a cat or dog - they get better medical care than humans do!
Anyhow, I've been given a spray to use three times daily and instructions to give my GP a copy of the prescription as I'll need to keep it up for a while *sigh* I wouldn't mind but it smells like photographic developing fluid and it's uncomfortable to say the least, I'm not supposed to get water in my ears and then this spray fills me up and leaks down my neck *shudders* and it sort of burns - not in an uncomfortable way, more like it's stimulating my inner heating system, still, as long as it gets rid eh?!.
*grin* just looked up the active ingredients in the spray - apparantly it's used for difficult ear infections especially in dogs! LOL
That's tickled me that has. Ah well, maybe in my next life I can be a cat or dog - they get better medical care than humans do!
Tuesday, January 02, 2007
new year, more sleep
On the plus side I've only crashed twice over the Christmas period - on the downside both times were in public.
The first one wasn't so bad, we were in church Christmas morning and I just sat slumped on the pew with Stef holding me up before half carrying me out to the car at the end of the service.
Last night was worse.
I'm not sure what brought it on - I'm only guessing when I blame the speciality tea I was drinking. It felt like I'd had an espresso, the jumpiness, the sensation of something bubbling just under my skin (not a pleasant sensation I assure you) then I crashed totally - it's like when a pc is hit by a power surge, there's a split second of all system functions going nuts then it just shuts off - that was me.
I was the dreaded blue screen of death last night.
It didn't help we were visiting people who lived in a flat at the top of 3-4 flights of stairs, it took 2 people to carry me down them after Stef had put my shoes and coat on, another person trailing behind carrying my belongings, then being stuffed into the car only to repeat the process at the other end.
What makes it worse is that I get so frustrated at not being able to move or help myself that I start crying - then I get embarrassed at being so pitiful and can't stop crying, which makes me feel even more embarrassed.
I've had to cancel going to visit my best friend today because I'm just too wiped out, I've not seen her for months and was really looking forward to catching up and now I can't. I hate this fucking illness.
The first one wasn't so bad, we were in church Christmas morning and I just sat slumped on the pew with Stef holding me up before half carrying me out to the car at the end of the service.
Last night was worse.
I'm not sure what brought it on - I'm only guessing when I blame the speciality tea I was drinking. It felt like I'd had an espresso, the jumpiness, the sensation of something bubbling just under my skin (not a pleasant sensation I assure you) then I crashed totally - it's like when a pc is hit by a power surge, there's a split second of all system functions going nuts then it just shuts off - that was me.
I was the dreaded blue screen of death last night.
It didn't help we were visiting people who lived in a flat at the top of 3-4 flights of stairs, it took 2 people to carry me down them after Stef had put my shoes and coat on, another person trailing behind carrying my belongings, then being stuffed into the car only to repeat the process at the other end.
What makes it worse is that I get so frustrated at not being able to move or help myself that I start crying - then I get embarrassed at being so pitiful and can't stop crying, which makes me feel even more embarrassed.
I've had to cancel going to visit my best friend today because I'm just too wiped out, I've not seen her for months and was really looking forward to catching up and now I can't. I hate this fucking illness.
Thursday, December 21, 2006
Here I go again... *cue guitar*
Got up at around 11am after another night of nightmares.. Again I couldn't remember them - it's a crying shame that, it means something is obviously bugging me but I can't think what it is.
Perhaps I'm subconciously stressing about the DLA thing and my financial situation, it is the most likely candidate after all. Or perhaps it's because I'm getting broody again, I'm starting to feel as though my chances of motherhood are fast slipping away, that's the part of me that even thinks I deserve to have kids anyhow (but we wont go there now will we?) Or maybe I'm just worrying about this illness again.
Meh! either way, I'm not sleeping too well and I've given up any pretence at pacing until the holiday madness is over - i'm back on the boom and bust regime, it's not good but it's at least productive (when I'm not bust) sadly it also means my sleep cycle is buggared again - look at the time - proof positive since I should've been in bed at least an hour ago - yet I'm wide awake.The guys and gals on the support group message boards have been keeping me entertained and mildly disgusted chatting about this
I wouldn't mind but I hate dark chocolate *sigh* why can it never be a nice bar of dairy milk eh?!
I've neglected a specific symptom round up for a while - not good since this blog is supposedly my way of tracking patterns but there ya go - my memory sucks, so here's an up to date 'as of this moment' one:
- Fatigue
- General acheyness
- Intermittant tinnitus
- Intermittant verbal dyslexia
- almost constant dehydration
- intermittant dizziness
- sore throat
- mouth ulcers
- problems with bowel movements (A.G to anyone in the know *blush*)
Actually - I could just be having nightmares because of the idiot downstairs and his 4am Dolly parton parties (they must be parties, why else play her greatest hits at full volume and attempt to sing along at the top of your voice? I wouldn't mind but the guy really can't sing)
At least he seems to have gotten rid of the dog, it's mournful howling all day was a little much on top of his other anti social and inconsiderate behaviour!
Monday, December 18, 2006
Tuesday, December 12, 2006
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.
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:
- Remodel my site from CSS css and html upwards, make it so that my blog and the cfs site fit into it more naturally
- Create alternate style sheets (for printing purpos, pda’s etc)
- Create an image gallery for my beadwork (to link to eBay)
- sort out a shopping cart and secure payment options (more hosting scripts to play with.. oh joy)
- 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.
Saturday, December 09, 2006
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!
Tuesday, December 05, 2006
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..
speaking of bed..
Tuesday, November 28, 2006
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:
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?!
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?!
Tuesday, November 14, 2006
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..
*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..
Tuesday, November 07, 2006
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!
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!
Saturday, November 04, 2006
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.
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.
Thursday, November 02, 2006
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.
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.
Monday, October 16, 2006
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!
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!
Friday, October 13, 2006
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.
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.
Sunday, October 01, 2006
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*
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*
Monday, September 25, 2006
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.
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.
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