mini relapse time again

This morning saw the return of the grunting immobile shell that is me when things are bad.
Stef had to lift me out of bed, carry me to and from the bathroom and hoist me back into bed. Little reminders like this really suck.

Still, as Stef told me when the tears started this morning, "there's no point in crying babe, you have to expect it, you have this illness for life so it'll happen occasionally. You have been doing a lot lately" He then very sweetly reminded me that he's here to look after me and that I have nothing to worry about.
My man is the best.

I've had a full body massage, particular attention to my feet since a good foot rub can sometimes bring me out of it, when that failed he just made me as comfortable as possible and told me to sleep as soundly as possible through the banging and shouting from downstairs.

I must have managed it because I only vaguely remember Stef kissing me on the forehead and asking if I wanted a drink or anything before he went out (we're going to a wedding tomorrow and there's a couple of bits to get, serves me right for leaving it to the last minute really)
Anyhow, that was at about 9am so I should be ok. Going off past experience if i'm having a REALLY bad one i'm out for the entire day, it's only been about 4 hours and I'm up, brain is functioning and I've managed to fix myself a bowl of cereal.
Just means I need to take it easy so I won't spend too much time on the pc today..

I know it's not stress this time at any rate. The medical assessment doctor must have had a different reaction to my answers than Stef and I did because I had a letter through telling me I have my benefits for at least another year. Another stress reliever came in the form of a telephone call a few days ago.

We're moving. Finally, we're escaping the neighbours from hell.
In about a months time Stef and I will be relocating to Bushey in Watford. I can't wait.

Not only will I be an hour away from my best friend (as opposed to about 5 or 6) and the same distance from various other friends around the area, I've found a course at Watford college (franchised from the university) that far surpasses anything I'd hoped to do in Manchester.
I've been trying to sort out financing this week, all that running around is probably what contributed to todays little hiccup, but fingers crossed I'll be on that course come september.

If I'm not I'll be contacting the DEA in Bushey and trying to get some permitted work and applying to do my maths GCSE again (or whatever equivalent is offered on govt. programs alongside permitted work) I'll just try again next year for the course I want.

Either way, the future is looking bright, I have goals, I'll be surrounded by friends and I'm not letting a little thing like a lifelong chronic illness hold me back!
Now I'm going to sit by the window and listen to the massive fight going on downstairs - I can laugh instead of despair at my surroundings now an end is in sight *grin* Shame I have no popcorn to hand really ;0)

I'm cured!

Well.. If you discount the aches and the tiredness and the easily distracted/don't listen to people/ can't carry a conversation thing.

I'm expecting to be told that I'm no longer eligible for incapacity benefit very shortly following the medical assessment I had yesterday.
I had a very nice doctor this time, he didn't make me feel defensive there was no looking down his nose or air of disgusted superiority. He had on a very nice tie though and I kept being distracted from the questions he was posing through admiration of it.

I think I am ready for work though I would much rather embark upon a course of re-training in web design as it would benefit me more in the long run. I guess I will have to see whether that option is available to me if (as I suspect) I'm soon to be on JSA as opposed to incapacity benefit.

After reviewing the answers I gave the assessing practitioner both Stef and I came to the conclusion that really it must be fear stopping me from working, it's a confidence thing .
I may be tired, I may not sleep well and I may be in pain all the time But.. I am able to function, not as well as I once did admittedly, but well enough to take on a course of study - which in turn means I'm well enough to hold down a job.. I think.

This being the case I have renewed my efforts to reestablish contact with Ms Brady of the DSS to see whether I can in fact opt for retraining.
I've found a course at mancat that looks like a good starting place - I've also come to the sad realisation that I'll have to re-do my maths G.C.S.E. There's no getting around it, an 'E' grade just won't cut it so these are my first 2 baby steps.
From there I'll need to look into finding a course to further my interest, probably some computer science degree thing but most of the ones I've looked at have a LOT of algebra modules (good job that was my fave part of the maths curriculum at school huh?!) which is what made me concede the need to upgrade my G.C.S.E. level (well that and an a-c grade is a mandatory requirement to get on the course)

I know.. Why computer science if I only want to be a web designer? Basically, long term I want to work from home, for this goal freelance web design would be ideal.
Realistically I know that is not something I could start up straight away, I'll need to find a company to work for and there is more demand for people knowledgeable about database maintenance than there are for freelance web designers.

My goals are:

1. 2007-2008 Maths GCSE at grade c or above
   
2. 2007-2008 Learn mysql and php
   
3. computer science degree - preferably one with a work placement year.
4. job within the I.T industry
5. network network network
6. work from home as a freelance web designer.
   

I'm not putting dates on anything beyond those first 2 goals because there are financial factors to take into account and they are the only ones I know for definite are achievable (that and anything can happen between now and 2008)

I'm at a point where I know I can work part time possibly full time but I'm still wary of doing too much in case of a relapse. So.. I have the choice of getting a part time monkey brain job that barely covers the bills and will end up going nowhere or staying skint a few years longer and re-training into something more like a career.

I just hope I have the option to pursue my first choice, I've done enough monkey brain low paid jobs to last a life time, that's what probably put me in this situation in the first place - this time around I want a different, more fulfilling life.

Fingers crossed eh?!

Up in the air

My driving lessons are on hold (again) and I've still to hear anything from the job centre. I missed my medical assessment because I was having a crash day and basically.. I just don't know what to do with myself.

We're at the in-laws this weekend, Stef's helping tile the kitchen floor and I needed to get away from the flat. He's suggested we speak to them about moving in here. On the one hand that would be brilliant, I'd be closer to my best mate and all the online friends I've made on the karaoke forums and twitter, I wouldn't be living above a self centred wanker and I'd have more motivation to get up and push myself to do things. On the other hand, I'm 31 - do I really want to be moving into the house of my partners parents?

It's all moot at present anyhow since the subject has yet to be broached, but if we are going to move to the south, I need to know soon so I can start sorting out things like benefits/ college/ dr etc etc.

I have a new medical assessment next Wednesday so I'll pace myself and ensure I don't have another bed day when it comes around, I don't mind being cacky and mobile but the bed days suck.

Unwell

It's a song by Matchbox 20 and I love it. I liked it even before I came down with the delightful illness I have now, it was the highlight of my nights at the hard rock casino when it came on - I'd suddenly have a lighter step as I continued with my duties singing along to the video.

These days it holds a lot more meaning for me, just read the lyrics and I think you may understand why:

All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something

Hold on
Feeling like I'm headed for a breakdown
And I don't know why

[Chorus]

But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be...me

I'm talking to myself in public
Dodging glances on the train
And I know, I know they've all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow I've lost my mind

[Chorus]

But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be

I've been talking in my sleep
Pretty soon they'll come to get me
Yeah, they're taking me away

[Chorus]

But I'm not crazy, I'm just a little unwell
I know right now you can't tell
But stay awhile and maybe then you'll see
A different side of me
I'm not crazy, I'm just a little impaired
I know right now you don't care
But soon enough you're gonna think of me
And how I used to be

Yeah, how I used to be
How I used to be
Well, I'm just a little unwell
How I used to be
How I used to be
I'm just a little unwell

Which is why I'm putting an mp3 of myself singing the karaoke version

right here.

I wonder just how many people with 'hidden disabilities' can relate to this song? Too many I fear.

Shitting myself

..Not literally of course, but in the stomach clenching panic sense I am.

I just had a call from a lady with a very broad Irish accent organising a medical assessment for me. This one is to do with my claim for incapacity benefit. now, I knwo I want to get back to work, but I don't want to get forced back into full time work straight away because I knwo that will just lead to a full on relapse, I'm not prepared to deal with that again, it's taken me years to get to the stage I am now, I refuse to start from scratch and have to be carried to the toilet and forced to feed.

Yup, I'm cacking it. OK, so I know the criteria is slightly different for Incapacity benefit than it is for DLA but logic does not stop the stomach clenching, throat tightening 'oh shit' sensation that has practically paralysed me since I got off the phone.

I'm subsisting financially as it is - and that's with Stef contributing towards bills and things, if i lose this.. I know, I need to think positive and keep my spirits up or else i'll end up back in bed and lose all the ground I've gained this year, but man! I wish I could react better to stress than this.

Save me from the brain leech

I feel totally drained. I mean totally.
The only reason I'm even writing this is because I feel I need to force myself to do something other than crawl back into bed - I can't even get up the urge to do any singing.
I woke up yesterday feeling as though a layer of fog had been peeled away - it's the brightest I'd felt in weeks! Sadly an intensely emotional argument in the afternoon put paid to that. I still have a headache from all that crying and I'm back to feeling totally wiped out again.

I know there's things about the flat that need doing, I know there's things on my pc that need sorting out - I also know I should go and have a shower and get dressed, I just can't bring myself to do any of it.
I'm just so tired! Emotionally, mentally and physically knackered. All I want to do is lie down (despite knowing I can't sleep) just bury my head under the covers and hope the world goes away.
I'm not 'depressed' as such, I'm just past caring, everything is 'too much hassle' 'why bother' 'who cares' 'do it another day'.
I'm kinda numb.

It's not because of the argument - that was resolved quite quickly, though it was incredibly upsetting at the time. I'm just 'meh' and trying hard not to be - hence this digital blathering.

I'm thinking that maybe the mere act of writing all this out will kickstart something in me and I will hit the shower, I will do the washing up, I will sort out my clothes..

Except I just really can't be arsed.
I hurt everywhere and on top of that, even though it's a week early I'm feeling the onset of period pains and as mentioned before, I'm just too tired to care.
I'm hungry, but I just can't face making anything and I've nothing 'snack-y' in (except chocolate and I don't want to eat chocolate) I'm thirsty but I don't want tap water because the chlorine smell knocks me sick and I've run out of bottled water and juice.

gah! it's hopeless, I've just stared at the screen for the past 5 minutes while my mind blanked out. Today is another lost day, I should just face it as such and crawl back into my pit

Mood swings and driving

I was on a bit of a downer this morning when I posted this little whine on my main blog, I've since had my driving lesson and it went pretty well, considering I'm in a new car that has some of the controls in different places and it's been a year since my last lot of lessons - I'm pretty chuffed with how well I've retained the knowledge considering the mental difficulties I have these days. He's just going through the checklist of things they'll look for on my test since he's confident I can actually drive safely.
That nugget of info perked me up no end, it's nice to have confirmation you CAN do something when most of the time you are all to aware of the things you can't do.

I think my ear infection is back so I'm going to have to head to the doctors again, pain in the arse it is, but it's cheaper than going to buy the medication, that's the one bonus of a longterm sickness - no prescription charges!

I'm still sore, I'm still knackerd but at least I'm not crying or wanting to murder anyone at the moment, which makes a pleasant change..

Whoops..

I never made the job appointment, I spent the bank holiday visiting my family in Daventry and basically overdid it.
I've spent Tuesday to yesterday evening recovering (ie in bed and on the couch) and can't even call to reschedule until monday - assuming she'll let me since I didn't call to let her know I wasn't going in (bit hard to do when you can't get to a phone or form a proper sentance)
Meh, we'll see, hopefully it'll be ok once I explain what happened, in the meantime I need to get back on schedule and PACE!

I am starting up my driving lessons again next week though. I'm hoping dad is going to give me some birthday money when I see him on saturday so I can add to my savings and make a block booking,
Apparantly this guy Kay used gives you a taster lesson for free to assess you and then takes a stab at how many you need, she passed first time with him so fingers crossed I can too - she's a mental driver so I can't see why I wouldn't..

tired of waiting..

I went to see Ms Brady about the posibility of re-training or getting a job, sadly the systems were down (surprise) so there was not really a lot she could say about what they could offer me.
On the plus side she was very positive about the fact that I have several options, I just have to wait until my next appointment on May 8th to look at the specifics of those options as without a working system she could not access my file or any of the relevant information - so much for technology eh?!

She had me email a copy of my cv (updated of course) and a list of the types of courses I've been looking at with regards re-training, not sure if they got through to be honest since I've had no response, i'll just make sure I take the information with me in hard copy form when I go see her (and also on my usb memory stick in txt format - just in case..)

That's one thing dealing with the benefits agency does for you - it certainly makes you think of back up systems for everything you do, if you have a project then just immediately assume you're dealing with people who are really incompetant working on a system prone to crashing. You'll soon come across as uber organised!

Meh, roll on hearing some good news, I'm lookign forward to taking control of my life again.

Back to work

I'm going to see sue Brady at Baskerville house on Monday.
I'm nervous.

I just don't know what to expect at all. I've talked it through with Stef and he thinks it would help more in the long run if I try and get them to help me re-train in web design. I just don't know if they'll do that.
I'm also a little afraid that when I explain my problems she'll say there's not really anything they can offer me, I've taken this step, I really don't want to be shot down in flames at the first meeting.

I'm also afraid of having a relapse, I don't handle stress at all. I keep flashing back to some of my old jobs and the tightening in my chest makes me feel ill as I think of all the office politics and thoughtless managers I've had to deal with in the past.

Then I tell myself to stop being stupid, I won't be working in sales or customer service for those exact reasons, if they try to push me in those directions because of my experience i'll just have to take a stand and say NO!
These people are supposed to be here to help, there are several lasses in the support group who have used them and can't sing their praises enough. It will be ok, the worst that can happen is they say that in their opinion I'm not ready for work just yet and that will leave me no worse off than I am now.

I just really don't want to hear that.
Best case scenario for me is that they help me find a course in IT/ web design somewhere and offer help in the way of equipment and travel costs, that would help sort me out in the long term, short term; find me a job that I can either do from home or that doesn't involve me having to deal with too many people face to face or travel too far.

I just wish monday was here so I don't have this uncertainty to deal with, I want to start sorting out my future, either by starting to earn money to save towards it or by training so that i can better myself. There's nothing worse than stagnating!

NHS blog doctor got me thinking

I was on the comment trail and stumbled across a 'the NHS blog Doctor' after reading a few of the posts on my landing page I decided (out of curiosity) to do a search on cfs articles within the blog itself

I've been reading and reading and finally started to comment only to realise my comment was becoming a full blown post in its own right, rather than erase everything I decided to copy and paste it in here because this is MY place for MY thoughts on CFS and if I'm going to take up a lot of space, it's far more polite to do it here instead of eating up someone else's webspace..
Anyhow, a few of the comments to his articles were involved with classifications/ names and the like to them I write:

I had an initial diagnosis of PVFS about 3-4 years ago,

Now I'm classed as either CFS or ME depending on which medical person you're talking to, I've no idea when the diagnosis changed but when talking to someone I tend to use CFS as you can at least tell people what the acronym stands for - M.E. has 2 different names according to my research for the site I built about the subject (which needs updating desperately) both of which seem unpronouncable at the best of times - never mind when you're having trouble verbalising a sentance.

The things is, I really don't care what it's called but I need a name to write on the 1001 forms you're forced to fill out to keep a roof over your head when you can't work a steady job. Every time I go to see my doctor I'm praying he says "ahh.. Miss Stringer, sorry about the last few years, you were misdiagnosed, here - take these shots/ pills and you'll be fine"

I'd be too happy about being able to go back to work and being able to look at the prospect of having children without the worries of a relapse to care about a little thing like misdiagnosis.

On the aforementioned blog there is a lot of talk about Lyme disease but from just reading that wikipedia link it seems impossible to differentiate between it and CFS is it that you can test for Lyme but not CFS, or is there still no way of telling apart from a rash?
To be honest I'm almost afraid to look into it because I hate feeling like a hypochindriac, I especially hate it when my boyfriend - the person who has been the most supportive person imaginable throughout this whole thing, laughs at me and says I'm reading into things and then convincing myself I could have it - I don't, at least I tell myself I don't do that.
But do I?
If I'm completely honest with myself, I do - a little.
For example - my elbows, the pins and needles in my hands, the pain that travels up my arms into my shoulders and neck that cause the headaches.. I thought I'd found a cause for them but when I mentioned it to him, he laughed - so I didn't go to my doctor.. I should, but I don't want to have the hypochondriac label even more firmly attatched to me than it already is over the CFS one.
Is it because I'm so desperate to not have CFS/ME that I'll look at things which are treatable and mentally slot my symptoms into that shell instead of the CFS one? Or is it the more reasonable desire to know WHATS WRONG? To want to find a root cause for the problems before me so that I can understand them and find a solution.

I've been alternately researching symptoms and burying my head in the sand for so long that I no longer know just what drives me to care anymore.

(Now this is the point where every other sufferer I know will probably clamour to have me burnt at the stake..)

I do believe there is a psychological aspect to this illness and that is why CBT does help some patients and not others.
Some patients have had this for decades and have received little to no help from a recognised medical professional, they have been ridiculed by friends and family and termed a hypochondriac by one and all - these people are so depressed by the effects of the illness that it has come to define them, they respond to almost anything put forward in a kneejerk defensive manner - the 'ill try it but it wont help' attitude because they have tried practically everything available already.
CBT will only help someone who is truly open to accepting the illness and finding ways of managing to live around it - that would be the people 'new' to the illness, those still unsure just what it is they have and what the hell does it all mean. The people I mentioned before have had the illness for so long that they're stuck in the 'fighting it' stage, they will never truly accept it because how can you accept something about yourself that nobody else will?

I'm not sure if that made any sense, I guess what I'm trying to say is that CBT is a way for patients to define just what cfs means to them and then in turn helping that patient come to terms with all that definition means, people who have suffered with it for a long time already know what it means to them and therefore feel they are being patronised to and cannot take on the second part of the therapy - the part where they can come to terms with it, they already feel that they have - In other words CBT is a waste of time and resources for these people - all they really want is for people to take them seriously, becoming well is now a secondary wish because it seems a futile one.

Until there's a cure there's no point doing more than learning to manage it, in my opinion to do otherwise just stresses you out which in turn exacerbates all of your symptoms and so on and so forth the vicious circle runs ever on - the problem is, how best to manage it?

Which is why I worry about hypochondria and still occasionally look for alternative explanations for my condition on the sly.

Now I'm off to read Marys blog because from her comments over at NHS Doc she seems to be right on my wavelength..

My elbows hurt.

Like, a lot.

they have been for a while - even before the fatigue thing started so that makes it several years, funny how I forgot they used to hurt before, blogs are great memory nudgers I guess. But of all the joit aches I have evry day, the elbows hurt the most.

Even with the 'sleepy pills' I couldn't sleep last night, the pain was just that bad. I dozed on and off but didn't really hit sleep, the one time I got comfy Stef decided he'd roll over and cuddle me and I couldn't find the comfy spot again..
I wouldn't mind but when something hurts that much it just makes all the other aches feel worse, now my wrists and my shoulders, right up to my neck, all hurt - I know, sitting hunched over a keyboard won't help, but I have to distract myself somehow.

I'm groggy and irritable from the lack of sleep and the pain but what can you do?
My elbows feel like they're on fire, it's as though the muscle or something is in the wrong place and it's stratched and fraying on both arms.. I can't straighten my arms when I'm in bed, they're always bent - I'm the most comfortable when they're raised above my head but I can't sleep that way when Stefs next to me because I've got a crappy mattress and as soon as he lies down I roll into him because of the weight difference.

I'm just sore, depressed and fed up.

Phenergan and ginger

After the happenings of the other night (you may wish to take a moment to check my other blog for details) I've had trouble sleeping.

I've been doing reasonably well sticking to the sleep schedule barring a couple of late nights and bad days, but since Saturday I've been lying awake with the adrenalin kicking in every single time a security light goes on or I hear the gate slam (which is a lot seeing as how they kicked in the gate as well so there's not catch to stop it)

Anyway, since I don't want to balls up the progress I've been making I went to the doctor for something to help me sleep.
I told him the situation, he was most sympathetic - actually told me to move as soon as possible, he took one look at my address, read out the street name and said he wasn't at all surprised, he's got a couple of patients along here that similar things have happened to, all older than me but classed as 'easy targets'.

He did not wish to give me sleeping tablets because, not only would he only be able to give me a weeks supply, they are highly addictive. Instead he's prescribed a course of antihistamines.
Apparantly they do the job just as well, as a bonus they should help with the dust allergy I seem to have and I can have a months worth.

Now all I have to do is wait for the council to come fit a new front door.

On the cold front, it seems the ginger method is working, I only had the sniffles for a couple of days, I do have a tickly cough but that could be because of all the dust in here, it's ridiculous how much you get in this flat.
Here's hoping we find somewhere decent to move before the end of the month - I could well do without all this!

Work or death!

Well.. Maybe not anything quite so dramatic, but i've decided i'm sick of being sick and i'm sick of sitting on my arse and being skint!

I've spoken to the jobcentreplus people and they're arranging for an adviser to call me, in the hopes I can sort out either a training course or even (please god!) a job.

I've been sitting around waiting to be well enough to work and that hasn't happened, so instead i'm being pro-active, I'm going to try and find a job that works around me instead of it being the other way around.
Who knows - if i'm lucky they may be able to send me on a web-design course, or even offer me some in-house training somewhere so I can get paid while I learn.. Anything has to be better than the way i'm doing things now - and if the worst happens and I end up having a relapse..? Tough, I've not lost anything and at least I'll have tried.

This is about self-respect and making my life better, ok, things are not that bad - I do like having the time to do what I like, but at the same time, I want to be paying my way and not worrying about money all the time - for that to be resolved I need a job.

Fingers crossed this works out for me!

Pacing

I've made the resolution to try and pace myself well - this is proving a difficult task. I have a timetable that i'm supposed to stick to, but just 4 days in and I slipped - despite knowing full well I had an evening out planned with friends, I spent a good hour playing on the wii (fishing, bowling and golf) I also went for a walk around the shops because I wanted out of the house for a bit..
Neither of which are on the timetable - and I only rested for about 30 minutes in the evening.

Which is why today I had the full on 'cataplexy' thing going on, I was awake(ish) I was certainly aware of things in my immediate vicinity - I just couldn't move a muscle, everything was fused almost solidly into whatever position I'd fallen whilst asleep - so at least I was comfortable eh?!
Finally managed to get up around 1.30pm, had a small bite to eat and my pills then checked my mail - now I'm here.

Why am I here?
Well, one of my emails included this link and having gone through the site I wanted to work something through for myself.

This paragraph really struck a chord - it's exactly what I've tried to explain to others but couldn't:

if you have ME/CFS you cannot allow yourself to fully experience all your symptoms all the time, or you would never get through the day. Out of necessity we detatch ourselves from our symptoms to some extent because that's the only way to survive ME/CFS

The thing that really struck me though was the section on reverse therapy. I've heard of the process before but it's another one of those treatments that has made something inside me rebel at the thought of trying it - an instinctive rejection of something that will not help and will only cost me money I don't have.
There's a lot of those kind of therapies around.

Having read about Matthews experiences I can honestly say I'm still not sold on the idea myself - but there are some parts of it that made me go "hmm.. actually, there may be something in that"

For me it was this portion that struck a nerve:

Getting your body to trust you again

For most people of course ME/CFS is post viral. But to the body/mind a threat is a threat - physical injury, a virus, stressful life events etc, they are all the same. After these experiences the body goes into a heightened state of alert but we carry on because we don't know what else to do. The sense of something being wrong gets stored in the body tissue and a concious realisation that the problem has been solved is not likely to release it. For example, during my illness the backs of my legs continued to be stiff and despite years of Yoga practice, any exercise to stretch them just resulted in the legs stiffening up again, and I experienced an increase in tiredness.

After the second session I realised my concious mind knows I have no intentention of returning to the house where I was assaulted, but my body did not! So I did a Yoga stretch pulling on the backs of my legs, then thought to myself "I will never again live in the house where I was assaulted". I waited a few seconds, and lo and behold, the muscles just let go in a way they hadn't done for 3 years! I then promised myself, outloud, to "never again run on empty", as I had when working whilst being exhausted by the head injury. And I got the same result!

It made me think of my responses to my mother - how the second I made the decision to never have her as a part of my life again, most of my symptoms practically vanished, how if I dream about her or one of the family bring up the subject I start having problems again. I know that's a very simplistic way of looking at things - but it's also an undeniable fact that I'm a healthier, happier person if she is not in my thoughts, never mind my life.

The problem is, how can I make it clear to myself that she is going to remain a stranger? Short of cutting off from the rest of my family completely I can't guarentee it so it's not as though I can make that kind of promise to myself and keep it, perhaps this is why I'm so eager to move as far away from Manchester as possible? Could this be the subconcious reason I'm so happy when I'm looking for a new home and so depressed when it falls through?
But then of course, I could just be grasping at straws again to explain my symptoms and she's conveniently easy to blame

Anyhow, this site is definitely worth a look, if only for the eye exercises, the miso soup recipe and the yoga demonstration.

Moving on up

..and moving on out.

That's right, we've decided that we're right royally sick of the muppet downstairs - even though we can mainly tune him out these days. Instead we're looking at moving home, possibly Knutsford way - perhaps even as far as Sandbach.
I'm no longer bothered about getting a decent doctor so it doesn't matter where we move - lets face it, I have a fantastic doc now but he can't do anything for me.

I had a long hard look at myself when the DLA decision came through denying me any money and I've come to the conclusion it is probably a justified decision.
Before I went into hospital for the perianal abcess experience back in.. um.. October? November..? Meh! Whenever it was. Anyhow, prior to that I was doing really well, but I was pacing properly and making a concerted effort to stick to a healthy diet and a decent schedule, that lapsed pretty much as soon as my backside broke out and I've not really tried properly to bring it back - this is why I'm so crap at present, I have no one to blame but myself.

The worst part is I know better! I wrote an entire page on the benefits of pacing for my website! I know eating and drinking certain things help more than others. I know beyond a shadow of a doubt that diet has probably the biggest impact on my ability to manage this illness than anything else, yet I've been lazy, I've allowed myself to sink further backwards because it's easier to let Stef do everything, if he doesn't feed me, I don't eat - even when I'm at a suitable level of energy to make something, If he doesn't tell me I forget to take my pills, I don't go to bed or get up at set times..

I've allowed myself to become a leech. That's about to change, I had a look at my life and what I'm becoming and I don't like it one little bit.

Hence the chat we had earlier.

I've made a timetable for myself as I did the last time things were going well. the only things written in blood (or coloured in red) are meal times and waking/ sleeping times. I have pencilled in a cleaning rota interspersed with rest periods and free time, but these are subject to change depending on the demands of the week. I've also gone a step further and done a little nutritional research.

Since Stef want's to lose weight and has asked me to help him with this I've devised a shopping list and provisional meal plan using the Glyceamic index sadly this means I have to give up a lot of my comfort foods - the worst being mashed potato (my absolute favourite) in favour of things like lentils, it's not as bad as it sounds though, Stef is an amazing cook so he even manages to make lentils taste delicious - but it's not the same as a proper plate of mash is it?

The upshot of all this is if when I've followed this pattern for about a month I should be approching my former energy levels - maybe even sooner as long as no other colds/ ear infections etc sneak up on me which means I'll be able to recommence driving lessons, I need to get my licence before my theory runs out so the sooner the better - this also means once I've passed my test i can start looking for work, it's travelling that wrecks me more than anything else - even when i'm doing well and pacing properly, my own car will halve all journey times and ease that particular piece of working life no end.

See, I'm back to being a positive bunny again - it's amazing what a kick to the head will do for you sometimes..

a.r.s.e.

I've been pretty bolloxed since my trip to the bank the other day - whats worse is how that particular trip went.
Ever since I came down with this illness it's been a case of one extreme or the other - I can either walk or I can't, I can speak and be understood - or I can't.

Now though, it's horrible. I felt up for the walk so I set out as normal - within about 50 yards I was forcing myself to put one foot in front of the other, my pace was a crawl and I was actually chanting silently to myself to keep going, a 15 minute walk took me over an hour - and getting back was a major trial. I made the mistake of pushing myself to get some cleaning stuff from the precinct (and nearly died of shock when I found the savers had changed to a superdrug, how long has it been since I last went shopping?!)

ANyhow, by the time I got home i'd been gone 2 and a half hours, on a normal day it would take 30minutes tops to do my errend and get home, I made it through the front door and sat down crying at the thought of pulling myself up the stairs for a sit down.
I finally made it upstairs and basically crashed until Stef came in. It was a rotten day all told.

The next day ended up being even worse. I had a shower and as I went to get out my left leg gave way and I fell quite painfully - i managed to hit the sink, radiator and the side of the bath on my way to the floor, Stef was unable to get in to help me because with me on the floor he couldn't open the door - I really don't want to have to go back to showering with the door open 'just in case', it's been ages since this has happened, I'm tired ALL the time, my head is a foggy mess, i cant retain any knowledge and its no good trying to give me instructions to follow - all I hear is "blah then you blah blah blah before blah blah"

*sigh* at least I can still bead.

weyhey!

So, I slept in until almost 1pm - despite being in bed by 12.30 last night (minor achievement) ok so I wasn't in a deep sleep for most of that time, but I woke up not feeling as though I'd been used as a football in the night by a team of mules - which makes an incredibly pleasant change!

It's amazing how much brighter the day feels when you feel a lessoning of pain isn't it? it's miserable as sin outside yet I'm feeling happy and relaxed, I'm even planning a walk down to the bank later so I can pay some bills (just waiting on my hair to dry, i've been a skank for days but today I felt up to full on cleansing, nothing beats feeling clean, warm and 'well')

Right, breakfast, pills and on with the day. *grin* my life rocks.

Bad day

Meh, should've known.

Woke up around 10, got up about 11, checked 2 emails and ended up back in bed - too dizzy to not be.

By 2pm was dying for food but couldn't get anything, visons of my stocked fridge and cupboard were taunting me and there was nothing i could do about it.
Stef cooked me something around 4ish and i'm back on the pc trying to wake up and show willing.
reckon i'll go back to bed shortly, i ache everywhere

pathetic, weak, shaky, dizzy achey mess.
m.e. sux ass!

Today has been a GOOD day.

Hopefully the first of many.

I woke up and managed to get out of bed without having to push myself (which is always a good sign *grin*) I even put in a load of washing and remembered to take my pills (go me!) Sadly I took it a step too far and went shopping.

Bear in mind it's been weeks since I've been in any fit state to go far, let alone carry things. Anyhow, I managed to get to Aldi, got a trolley to lean on even though I wasn't buying much - this proved to be a fatal error because instead of using my Ruksac as a basket like I normally do in there (best way of making sure you don't get too much) I ended up with 2 extra carrier bags, ok so the bags only had bread and pasta in them, it was still more than i've lifted in quite some time, I was absolutely shattered when I got home.
Sat at the bottom of the stairs for a few minutes then forced myself up to get the stuff unpacked before I crashed.

Wasn't out of it for long though *grin* and the rest meant despite an initial lack of enthusiasm, about an hour or so after Stef had gone for drinks with a mutual friend, I went out to meet up with them, It has been a very pleasent evening all told - it was quite pleasent being greeted by name by the landlady even though it's a good 6 months at least since I was last in there, she asked how i'd been/ where i'd been etc and was generally made to feel as though I've never been away *sigh* I miss going out sometimes, today has been ace!

Unfortunately, i'm aching all over and my throat has been killing me all day - but that aside, I think I may actually get some real sleep tonight, hope so - this flat needs a really thorough cleaning and I've earmarked this week to do it!

medical assessment hell

See here for the full story.

I can't believe how down the whole thing has made me, I'm sure I didn't feel this bad last time I had one. Mind you last time I went stef was practically carrying me and I struggled to do the physical things so I doubt they were as sceptical about my claims as the guy was this time.

It just sucks major donkey bollocks.

And.. Calm.

The lovely Kevin from welfare rights was around again today, he's filled in my incapacity forms and helped ease my mind somewhat about the dla medical assessment I have on Tuesday at Albert bridge house.
I've been worried about this because the last time I had a medical assessment they took more money off me - hence my current ridiculously in debt financial state. The thing is - if I were trying it on i'd just shrug my shoulders and get a job, sadly I'm not and I cant so this is almost literally life or death stuff for me (only 'almost' because I'm sure stef wouldn't see me homeless or starving)

You see I always downplay how this affects me mentally because I don't class myself as depressed, yes it gets me down - but the way they use the term 'depressed' makes me think i'm going to have pills forced upon me and I don't want that. i'm not suicidal i'm just frustrated and worried and quite frankly fed up of being left to rot by the medical system.

Here's what I mean by that last remark:
Whilst we were going over my paperwork today we found the last letter I recieved from my 'specialist' at hope hospital, it's dated 24/07/2006
In it Dr Haeney ends the letter by saying:

I will see her, probably, for a final review in 2-3 months time.

It was that 'probably' that tickled Kevin.

It's now 7 months since our last meeting and I've heard nothing from his office. I'm not surprised though, he said himself at our last meeting that there is nothing he can offer me, I've done the CBT and been discharged and I attempted the energy for life program at NMGH which means to all intents and purposes they've exhausted whats on offer in the way of treatment, I'm on my own.

Gotta love 'em. But that's why I haven't bothered pursueing the lack of correspondance, he's already said theres nothing he can do - why waste my tima and his with a trip in there to be told the same thing again? At least he can give his time to people he can help if i'm not sat there asking questions he has no way of answering.

Meh, no matter. I'm expecting to be called for another assessment for my incapacity benefit as soon as they receive my forms so I guess I can just suck it up and pray I get a doc who understands this illness and will judge my case on its own merits instead of lumping me with the blaggers out there.

Oh.. and the ear infection has not gone, it's masquerading as a throat infection - at least thats what I guess is happening with my throat, it aches and feels swollen but for once there's no visible ulceration and as long as I stay hydrated I can swallow without too much discomfort. I will go to the docs about it, but i'll wait til after this medical assessment, you never know - they may spot something and save me a trip.

Tension headaches and vile nastines

Last night, well, most of yesterday, was spent in a miserable heap - I was crying for no reason, my head was pounding - so much so that at some point in the afternoon it developed full blown migraine status and I spent most of the day in bed or lay on the couch.

I'm sick of aching, it used to be that i'd ache when it was hot - now i ache when it's cold, it's like my muscles fuse into place and when I move them the 'crack' is audible.
It sucks major donkey bollocks.
I'm completely back in the unrefreshed sleep camp - probably my own fault since I've not been going to bed until gone 1am, but i'm just lying there for a good hour before I doze off, then i'm skimming sleep all night, constanty waking up and dozing off unable to hit deep sleep.
and I ache. Really ache - everywhere, my back, my arms, my legs, my neck and shoulders..
I'm a 30 year old woman inhabiting he body of a 72 year old.

At least that's how it feels.

I can guess forever as to what's causing this but i'll never be right - I know stress is not helping, I'm worried about money again, i've got to fill in my incapacity benefit forms but as soon as i sit down with them i get panicky and hit meltdown and just go back to bed - i can't keep doing that because they need to be in soon.
Guess I should call welfare rights again.

The thing is, i know about all these new guidelines they have regarding ME/CFS which means that since i'm apparantly a 'moderate' case I may not be eligible for full benefits - i'm barely scraping by now, actually i'm not scraping by, i'd be buggered if it wasn't for my overdraft and that's being slowly eaten away again. I'm just stressed.
life stinks.

pissed off

I stupidly thought I was getting things under control - again!
Why do I never learn? I'm back on the boom and bust routine because it's the only way I get to do things.

On the plus side I think the ear infection's gone - on the downside I've now got a throat infection.
The upswing I thought I was on through mucho water drinkage was obviously that high you get when your body first starts to fight off infection - I should've known, I've been in far too good of a maood the last few days - even despite not sleeping properly.

I'm back to feeling no refreshment from my sleep, needing to have a doze in the day - despite staying in bed til gone 12 most days, I ache everywhere and the wanker downstairs isn't helping matters.
He stopped playing his music around 1.30am and started up again at 5.23am, the guy must be on drugs or something!
I'm only up now because I tried to make an appointment to see my doctor - sadly the best they could do is next monday, she said to ring in tomorrow morning for an emergency one if i needed sooner - I have to get something for my throat - it hurts to swallow and i had trouble breathing last night, 1000mg of paracetamol took the edge off but I'd rather get a spray that targets the area than painfully swallow pills that don't.

is it or isn't it?

After 3 years I still find myself looking at other illnesses and thinking 'it could be that - what if it's that and not cfs - did they test me for that? Was I misdiagnosed?'

It has to say something about this illness that I'd rather have anything else - preferably something treatable.

As it is, I've been looking into the causes of dehydration, and I can't help wondering if the normal diabetes test brings up all the different types - could I be diabetic? all my symptoms seem to be the same as that of a diabetic, could I have been misdiagnosed? please god let me have been misdiagnosed - I could get treatment then and go back to work!
Or could I have some adrenal or glandular problem - or maybe it is because of my teeth? my teeth are terrible, I'm always getting mouth ulcers.. Perhaps its a mineral deficiency..?

The list goes on and I end up feeling like a hypchondriac again, you'd think after three years I'd be resigned to my diagnosis and just getting on with things - not so, every time I go to a dr or a specialist there is a small voice in the back of my head praying to hear the words "Actually miss Stringer, you appear to have [insert virus/ illness here] I don't know how we missed it before but if you start taking these pills you'l be back to normal in no time." It's ridiculous I know, but each time that's what happens and my hopes are dashed because the consultant in question never answers my prayer.

This is an ongoing mental cycle, I start researching some symptom or treatment that has been bothering someone in the support group, I get information overload, start to feel depressed and then try not to think about the illness at all for as long as possible - at that point I usually stop going online as well because I know i'll be emailed about it and I'm avoiding even thinking about it.

That's basically how I get through my life - I just try not to think about the illness. When I do it's in an abstract way, it's not me, it's just something of interest.. Until I start thinking about me and my life and how it affects me then I get depressed and in order to stop feeling depressed I shut off from it all.. and so on.

Recently I've found I can talk about it to people - but then it seems like that's all I talk about, when I realise the direction the conversation has taken I start to try steering it away, but for some reason people then seem more interested and I get in a tizz trying to both explain what it is and what having it means - and simultaneously trying to think of something else to talk about before I reach the point the tears start - and they do, the second I stop managing to fool my brain into thinking this isn't personal I get a wave of emotion and the upset brings about embarrassing emotional outbursts.
Surely there's more to me than this?!

Ah well, I guess I should just prepare for another outburst of depression - it's time to fill in the incapacity benefit forms again - bit hard to ignore something when you have to write about it in detail in order to recieve an income eh?!

Dehydration and cfs

After yesterdays post I left this response on the bury/ bolton support group message board :

It has made me wonder though - i thought the dehydration thing was a symptom.. what if it's actually a contributing factor?
I was just talking to stef about it and he says i'm actually better when i'm drinking loads - I know when I was in Italy I handled everything fine - and we walked for MILES over there! but I was drinking water practically constantly all day every day because of the heat.

I know I was amazed at how well I coped, but I did have a mini relapse when I got back - but by then I'd gone back to my normal 'drink when I notice i'm thristy' routine - which is definitely nowhere near the rda..
It's just, ever since I first got this thing I'm always thirsty - so much so it becomes a background thing that you ignore until you can't anymore - and my lips are constantly dry and flaking, i get mouth ulcers all the time and.. well i'm just dry and run down even without the cfs stuff.

and Louise swiftly responded thusly:

There could be something in what you say as Dr David Bell, chair of the CFS advisory committee in the US, says you can reverse the symptoms of ME, but it only lasts 6 weeks, by giving an ME sufferer saline infusions. Also, there is research saying people with ME have low blood volume and water and salt increase blood volume. Drinking enough water is definitely essential for people with ME considering the research that points that way.

Which then made me want to know more.
This article gives quite a thorough accounting of the ways in which dehydration could be responsible for many of the symptoms of cfs - and I have to agree with it because those symptoms lessoned when I was in Italy and drinking more than my body weight in water - I had no aches and I didn't suffer any more than the people I was with after all that walking.

Now, the website of Dr David s Bell gives an account of the saline infusions Louise mentioned, I know when I was in hospital and they had me on a drip that was simply saline, I felt 'fresher' my lips plumped out a bit and lost the dry flakiness that I always seem to have these days - my eyes also lost the 'gumminess' I always have, even when they're not dry they feel 'tacky' as though they're drying out..

Still, it's unlikely we'll be offered anything like a weekly/ daily saline infusion in the uk so it's pointless going down this road. But I'm still going to try and up my water intake (she says.. )

I've just realised i've not had a drink yet today and it's already 1.20pm I need to set up a reminder system on my phone, if I drink a pint every hour it'll be approaching my italy intake and that's one way of determining the difference.

Isn't that odd..

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..

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.

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.

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.

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!

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.

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*)

At least this time depression isn't in there - I'm generally handling things quite well (please disregard the nightmares, I have no control over them)
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!

Free money

YEY - I got paid!

ok so it was only £13 but it's £13 I didn't have before.
Check it out:

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*