Stress, stress and MORE stress!

Mum got married yesterday.
It's been a nightmare the last few weeks because one minute it was on the next it was off and I've been slap bang in the middle of it - which means I've spent a lot of time in a none functioning state.

It's true, stress really does shut you down.
I must have been daft to think I could start an excersize regime at the hospital while all this was going on. I missed the last 3 appointments because I literally couldn't move, I'm going to have to call them and try to explain so they'll consider letting me try again.
I do think it could help, I just understand now why the others I spoke too were so pessimistic about it, you can't control when you're able to do things and though I have tried to at least attempt regularly keeping up with the exercises, I've done very little in reality.

The dizziness, headaches, muscle aches, head fog and mood swings have been in full effect almost constantly for weeks - I just hope that now most of my family crap is over with I can try and relax and get back into a routine of sorting myself out.
Wishful thinking maybe?
Lets hope not.

Bad girl

I didn't make it into hospital today for my energy for life thingamajig.
As has been the case over the last few nights I haven't really slept, but this morning the dizziness I've felt over the last few days hit with a vengeance, I literally could not stand up, yes physically I could move, but the actual process of trying to stand left me falling back down again feeling nauseous.

I had this for a few hours on saturday and sunday, yesterday I was fine (apart from a godawful migraine) I've felt weak and dizzy and sick on and off since thursday though. I'm not sure if I should go back to my dr or if ths is just another wonderful manifestation of crapness.
ugh it's kicking in again i'll finish this later, screens going fuzzy.

Reprimands and confusion

One of the lasses from the 'support' group asked for a list of my symptoms and more information on the energy for life program.
I supplied this - basically just cut 'n' pasted from the info I have on here (see, a blog is a good thing) She and others soon responded - I don't think my previous email regarding positive thinking went down too well with people (though in retrospect, what did I expect? No one likes to be told they're being miserable - especially if they have good reason to be!)

Anyhow, this was my response from the lass posing the question:

Well, I'm in two minds over the programme, in theory it sounds like a good idea but the 9am starts and 3 solid hours of sessions shouts to me that they have little understanding about ME. I also find it worrying that they are debating the pros and cons of pacing, if the main charities are saying this is the best road for us to go down I'm more inclined to listen them.

I'm very happy that you feel the program is helping but I do find it sad that you feel we are dismissive of therapies that are on offer if they don't fit in with our 'ideas' about ME.

IF anybody has come over as dismissive its probably because we've heard it all before, if these therapies are the magic cure surely we would all be better?? You have every right to be optimistic as you've only just become ill, you haven't been on the treadmill of various doctors for years with them telling you its all in your mind etc - speaking figuratively here as I've not really had that experience!

As you have been diagnosed quickly you have every chance of returning to full health and you haven't been exposed to negative attitudes so are more likely to feel positive about this programme but you need to understand the other people on your course who have been ill for a long time may not.
If they didn't get a diagnosis and they tried to carry on as normal it may be difficult to improve to such an extent as you. Plus they've probably heard it all before

I have been ill for over 10 years - with better and worse times - I managed to get myself back to education and carried on with my life for 5 years before I became worse again. I have never dismissed any treatment that has been offered, in fact I think I've tried most :-) but none have worked, including graded exercise. All they are offering you is GE which has been proven to not help people with ME, as far as I'm aware it can help people with CFS.
With regards to CBT I agree that some people can benefit from talking to someone to help them gain a more positive outlook and help them focus on improving, as its very easy to become downhearted but it shouldn't be seen as a cure.
Also only as long as its done by someone who understands about ME and who doesn't believe its a psychological illness.

This has confused me - all the reading I have done and the information I have from my own Dr state that CFS and M.E are one and the same thing. Yet she talks about them as 2 seperate illnesses.
How can they both be exactly the same and yet different? Where is the divider? They both have the same symptoms, the same type of diagnosis and both get treated together.
It makes no sense to me.
And I have no clue what CBT is.
This whole thing just made me feel like I really don't want to talk to anyone on the board again.

Everyone with this 'curse' is different, the symptoms vary wildly from person to person and the help they recieve is just as chaotic - yet the emotional reactions all seem to be the same.

I dunno, I just feel like everyone on there is just looking for a way to shout:

"Hey, look! I'm ill forever - and I'm worse than YOU! But you're going to end up like me in the end anyway, probably - good luck staying optimistic, I was once, didn't help ME either though..."
It's hard to stay truly positive in the face of all that "Nothing works for me - but it might for you..." Bullshit - that's just basically sounds like another way of saying "well, I've obviously got this worse than you have so it's ok for me to give up but you can afford to be positive about it"

So under the guise of being strong and optimistic, any positive thing just feels like something added just to soften the blow.
I know that's a really shit thing to say, I've never met any of these people and I don't know what they have to deal with day in and day out. But seriously, to me almost every post just reeks of hopelessness disguised as some form of positive affirmation that things are looking up! Who are you trying to convince here people? Me or you?!

This one was a slightly more positive reply from my point of view - but again, as you can see from the parts I've put in bold on both emails - overall the response was not quite as encouraging as I might hope from people in a 'support' group:

Hi Vics

I've had ME for 8 years now. I was diagnosed by my GP after just 2 months. Both he and my specialist Dr Pattrick believd I had a physical illness with a biological cause. I have not had a bad deal from the medical profession.

I personally requested that I try graded exercise which I did on a one to one basis with a physio and the sessions lasted half an hour.
The physio asctually stated that I had one of most postive attitudes he had come across. I really believed it was going to work but after the course I just went more and more down hill.

I think the reason the people on the courses who have been ill for 8 or ten years are sceptical is probably because increasing their activity levels and exercising more is something that they have tried over and over again in the past with a positive attitude and it has just resulted in them relapsing.

I personally think that a positive attitude helps but whether you make a good recovery from ME is mainly down to luck.
A school friend of mine became ill with ME around the same time as me I remember her saying to me "I've told myself I'm going to be ill for 10 years and any less is a bonus".
She had a negative attitude I was always commended for having a positive attitude. She recovered and I didn't.

Graded exercise does work for some people. I know 2 people who swear by it. However, even the medical advisor of the ME Association has stated how it harms more people than any other therapy.

I also know of many pepole who have made good recoveries from ME and they mainly do so within the first 5 years of the illness so as you have only had it for 6 months and you are able to attend these courses you obviously have a fair chance so I wish you the best of luck.

That last paragraph is by far the most encouraging thing I've heard - It's just a shame that the balance of both and other responses is weighted so far to the contrary...
Ah well, I've decided to stay away from any outside influences, take my concerns in to the guys on Tuesday and just try to keep to this course until my 6 weeks are up.
Fingers crossed I'm one of the lucky few it helps eh?!

Sadly, with all the family stress I've had since Thursday I haven't kept to the exercises this week - but I intend to give 'em a try again from tomorrow and I'll make my apologies on Tuesday... At least I can make it in - Sean has loaned me £200 to keep me going until I get some response from the benefits people. Lets hope it's soon - I can't keep borrowing off people like this just to get by!

Rants and state of mind

I've just recieved the following email from someone via the support group:

Glad to hear your doing well on the Energy for Life programme.
I've heard other people saying it wasn't very useful I met someone a few weeks ago who had been on the Energy Back to Life programme. She said the sessions were 3 hours long and started at 9am.
She felt it was like a form of bulllying and said the patients all met up in the car park afterwards to say how awful it was.
She just went along with things and said she was OK so they would leave her alone. They write things on the blackboard about self-esteem and motivation. She said she was virtually bed bound for the rest of the week and loads of people dropped out of the course.
I did once speak to someone who said they found the course helpful but she was already 80% recovered before she went on the course and admitted it did not lead to any improvement in her symptoms.

It kinda made me go off on one *blush* thought I'd share my response to the group in it's entirety, reading back - possibly I was a little harsh - I know some people are unable to function at all because of this, but to not even try something else?
I was a bit gobsmacked and... well... livid I guess...

With regards to the 'Energy for life' program,
Yes the sessions do start at 9 and I'll be the first to admit that it's a long 3 hours.

But I can also say that I've only really had CFS 'properly' for 6 months, I'm not yet at the stage of going once to something and sceptically listening whilst saying quietly to myself "that's no good, it won't help ME" and if I do catch myself doing it I hope I give myself an internal slap and open my mind to the possibility that it
might!

It was interesting for me because this was the first time I had encountered other sufferers face to face. I found that while all the other people there were friendly and intelligent, many of them have had this for at least 8-10 years - some longer.
On the whole, they also have not been as lucky as I have with my Dr.
I just felt that these ladies had been disappointed so often that they had resigned themselves to being sick and thats it, nothing anyone could do about it - That this was possibly just another thing sent to 'prove' they're not really sick - that it's all in the mind.

My dad and my boyfriend have been throwing the 'positive mental attitude' phrase at me till I'm ready to scream. But after sitting in that room for those 3 hours I'm beginning to think they may have a point.

Most of the people in there were just plainly disgusted at the idea of graded exercise (I'll admit I'm a little trepeditious having had more than a couple of adverse reactions to pushing myself physically - just as I guess you all have) the unspoken consensus seemed to be that "I'll do it because I have to, but it'll just make me worse - you'll
see".
I came home feeling a little sorry for the 2 physiotherapists, I think they're going to be pushing uphill with this - if the lasses don't just drop out completely.

Yes, I appear to be in a 'better' physical state than most of them - but I was VERY active before this kicked in, I've not allowed this to stop me doing a little bit when I have a good day even if it knocks me flat for the next week (ok, so after the session I now know thats the wrong way to go about it, but it has meant that when I have a good day, my body still does what I want it to do, mainly)
The only person not giving off "yeah, whatever" vibes was a lass who seems to have suffered with this forever.
She was in a wheelchair and could walk a few yards with help or a stick, she's been having physio for weeks to enable her to do this program.

To my mind - if physiotherapy can help her get out of bed, into a wheelchair and able to do at least 6 minutes of physical exersize a day after doing NOTHING for the last 6 years - well I'm all for giving it a PROPER try - mentally AND physically!

Saying you're "ok" and 'just going along with things so they leave you alone' totally defeats the purpose of it - everyone has different limits!
They need to know yours otherwise it will set you back because they'll have you doing too much while they attempt to gauge them!
You already know that if you do too much then it will seem like torture and you will feel crap afterwards - that's what they're trying to STOP!
(sorry, getting worked *breathe*)

My question is:
Why did they all meet up in the carpark afterwards to whinge? why did they not instead give some constructive feedback to the people running the program?

How are we supposed to get decent medical care if we act in this way - these people are not gods and we can all agree the medical profession do not really understand this, unless we HELP them understand it - how can we expect them to help us?

Um... sorry about the rant, but the level of hopelessness about it I seem to encounter everywhere really bugs me.
I KNOW it's hard - I have it too, that's why I joined this group - for a little moral support and the hope of some information. I wasn't expecting to feel as if there was no hope and that everything will be made harder for me through the disbelief of others.

Yes, the incapacity benefit and DLA will be a problem - I've heard nothing I didn't expect regards that - the government are quick to take money from us but a little less eager to provide it. Again - that's common knowledge.
What I wasn't expecting was the outright cynicism eveyone seems to hold with regards the medical profession. I understand that 10+ years ago it wasn't even a theory let alone a recognised illness and that many of you have battled problems I cannot probably begin to imagine - but these days they ARE trying.

I seriously think If people could just get over the 'but YOU don't really get it' stage, stop dwelling on the symptoms themselves (I know THAT is easier said than done) and actually have a little optimism... I dunno - maybe we could finally start getting somewhere...

Please don't anyone take this as a personal dig, it's the general attitude I'm striking out at, not individual people, but take a look at just the last 6 months, have your thoughts and attitudes changed?
If so - for the better or worse? If not...
Why not?

Just something to think about...
*end rant*

Gross incompetance - the government norm.

Date: 29 March, 2005
Dear Miss Stringer

we need to check that the details we hold for your benefits claim are still right. We sent you a form two weeks ago to fill in and return. We have not had your form back. This means you need to fill in the attatched form straightaway. If you don't the benefits you get from us will stop.

This is regarding the form I handed in on the 19/03/05 in person and was given a receipt detailing said form and all accompanying evidence..
This is not the first time this has happened.

It's just so frustrating. Every time I think I have something sorted so I can move on to worry about something else, it jumps back up and does a 'you're screwed' dance whilst laughing maniacally in my dismayed face.
I mean C'mon - when you have information signed for and a receipt issued - that should be it. I should not need to go through the hassle of re-submitting, they should just accept that its been seen, otherwise, why bother issuing a receipt? It's a waste of time and paper.
But hey, I guess they need to justify their existence somehow - how else can they say they are overworked, understaffed and in need of a budget increase? Waiting lists and backlogs are the best way of putting this image across - and how else to create a backlog than through incompetence?
I have NO income besides housing benefit - they have had a letter from my GP explaining it could take anything from 1-3 years to recover and that stress exacerbates my condition. Are they trying to make me have a relapse? Do they want me to remain unable to work and living off the pitiful sum allotted by an out of touch government for even longer?
Apparently so.

And there is still no news on the incap/ income support front and I still cannot get through to the crisis loan people.
Joy. *tightens belt further*
Ok.

Had my first hospital visit today, it may also be my last unless I can borrow some money for next week since it costs me £9.30 to get a taxi there and a bus back (the only bus that would get me there in time for my appointment just went screaming past packed to the rafters with kids hence taxi)

*gets off phone*
Arrrrrrrrrrrrgh!!!!
Just managed to get through to the housing benefits unit (yup - woohoo, me's multi-tasking today, s'a good day) The guy I spoke to has told me to forget about this form, it was a request sent out automatically by the computer because the form no. had been input incorrectly by the lad at the service desk (please refer to my above comments regarding incompetence please) I just got all stressed out and worked up because some twat cannot do a simple thing like copy a number down. Great.
These days I hate talking to people I don't know on the phone (which doesn't bode well to me going back to work in a call centre anytime soon does it?!) I get stressed and wound up too easily instead of handling the call calmly and quickly. I trip over my words, muddle my sentences and generally end up trying not to cry because of the frustration.
It's embarrassing.

Definitely a good idea to start computer training asap.

Ok - back to the hospital visit.

It was both good and bad - definitely interesting though.
I came away feeling both fortunate and worried after speaking to the other women in there, Bernie especially.
Most of them have had this for years, Eileen since '95, Bernie forever - it was the look of pity on Bernie's face that did it for me when I told her I'd only had it for 6 months, when she very kindly said "Well you may be lucky and get over it if you've only had it such a short time" the inference being she didn't really believe that.

Yup, it was comforting to know that other people have these symptoms, it was refreshing for me to look at it in a new way - instead of always thinking of the things I couldn't do, to realise all the things I could.
Without exception, everyone else in that room was far worse off with this than me. Even the other ladies also able to move without the aid of a stick or wheel chair had more day to day difficulties than I have. It was very humbling - sadly it didn't do me any favours with regard the nasty little voice in my head that tells me I'm a hypochondriac, that I've taken on these symptoms through too much reading into it, through being lazy etc etc. It's my own self doubt that makes me hyper-sensitive to throw away remarks or criticism about how I cope with it.
Too much self doubt... Must work on that.

I also realised just how hard this program is going to be for me.
I am not a patient person. I am crap at knowing my own limits and even worse at sticking to a routine, both things I'm going to have to learn and adhere to.
Whilst doing the circuit training I felt fine, plenty of energy left no problems. Nothing unusual in that when you consider that it was only 12 minutes (1 minute per exercise with a minute of rest in between) but when I was walking out to the bus stop I could feel the post-exercise burn kicking in - the same sort of burn I used to feel after a 20 minute warm up, 1hr30min work out and another 20min cool down.
It just really brought home to me that I need to be more careful, when I feel as I did today - 'normal' I tend to just keep at it till I drop - then I suffer for it, the same routine all these ladies had been following for years. The fact that instead I did what I considered to be 'nothing' whilst around me these ladies were struggling to do even half that...
To me that spoke volumes.

I refuse to deteriorate to that stage.

Hereditary?

Have just got back from the hospital with mum, she's been positively diagnosed with CFS as well - except she's had it for at least the last 20 years.
Gutted? Yes and no - she's just glad she's not got MS.

Woke up in agony this morning, Stef tried the whole massage thing bless 'im, didn't work but it's nice to be coddled *grin*
I've decided I'm going to have to start the dothiepin again and hope it was that and not the acupuncture that was helping me sleep. The last week or so has been hell - just constantly tired, and the pains have been worse again. I'm almost thinking the brain fog is worth surcease of pain - almost... I hate not being able to express myself properly and sort things out - even though I'm slightly more mentally 'optimistic' about it all.
I start my 'energy for life' program tomorrow at the hospital - graduated excersize and stuff.
Here's a rundown:

session 1:
9-10 discussion of expectations and fears, symptoms associated with the condition
10-10.30 cycle of chronic fatigue/ pain and how to break the cycle
10.30-11.30 exercise session (light physio/ circuit training)
11.30-12 goal setting

Session 2:
9-10 review of goals
10-10.30 factors affecting fatigue/ pain: thoughts behaviours emotions and external factors
10.30-11.30 exercise session
11.30-12 goal setting

Session 3:
9-10 review of goals
10-10.30 advantages/ disadvantages of pacing
10.30-11.30 exercise session
11.30-12 goal setting

session 4:
9-10 review of goals
10-10.30 barriers to return to physical activity
10.30-11.30 exercise session
11.30-12 goal setting

session 5:
9-10 review of goals
10-10.30 strategies for coping with fatigue/ pain
10.30-11.30 exercise session
11.30-12 goal setting

session 6:
9-10 review of goals
10-10.30 overview of management strategies
10.30-11.30 exercise session
11.30-12 goal setting

I'm also going to be answering questionaires each week about how it's affecting the symptoms. Fingers crossed it helps eh?!

Vitamins

I've decided that taking these supplements do help.
I stopped taking 'em for about a month, just to see (ok I stopped taking everything for about a month) and now I'm only on the Omega 3 oil, selenium+A,C and E and the Vitamin B supplements.
They don't help with the pain (obviously) but they do seem to help with the other stuff, head fog etc.
I'm going to try the Huo Zhu Wan again next week and see if that helps further like I thought it did last time, if it does then I shall not bother with the dothiepin and other stuff I was prescribed - I don't like the fact that I have to take one thing for an illness then 3 other things for the side effects of the illness medication.
I'll stick to the herbal remedies if I can thanking ye very much indeed.

I was told about another one that's sadly not available over here - Enada nadh.
Sounds good but expensive, and a bit of a bugger to get my hands on even with the internet. If the Huo Zhu Wan does the same thing then I'll just call Ben and get some more - I think I'll be able to manage £5pw for them - as soon as my benefits are sorted that is.

Right, I think I should go drink and take todays batch and have some shreddies. Food is a good plan now my appetite has returned.

I have penis envy

The last 2 days are a write off, pretty much nothing but bed because I was just in too much pain to do anything else, next to no sleep and a constant headache - joy.
I hate being a woman when it's like that.
Roll on Sunday!

food - toast. no energy to eat and anything else made me feel sick (sorry Sean, bless ya for trying though) feel better today - at least I'm out of bed.
Going to take my sick note to the benefits people as they need it for my incap claim, glad steve sent it back to me straight away, the less delay the better since finances are pretty dire right now...

todays symptoms - very weak (no surprise since i've not really eaten in 2 days and the floods are raging) headache, shakes (very little sleep I propose to be the cause) no brain fog that i can tell - which is nice, mouth and throat still sore, skin dry and itchy and just a general 'blaugh' feeling all over. Eyes are bad today though, not focussing too well.
I'm just getting some porridge, heading out with sean and getting some fresh stuff in before stef gets here tonight - he's gonna bitch at me something chronic if I don't *sigh* glad he's around to push me else I think I'd end up just wasting away in bed all day, even on thedays I'm capable of doing stuff.
Wanting to not disappoint someone is quite a powerful motivation I've found.

Mouth ulcers must DIE!

yup, it's harvest moon again and the mouth ulcers have returned. My hand appears to be back to normal though - which is good.

Stef came over around 4am as I was still awake - I'm just too unsettled here now ever since Daves car got pinched from our drive on saturday.
All last night I kept hearing noises that sounded like someone else was in the house - normally it wouldn't bother me as I'd put it down to Sean or next door, but Sean wasn't here and every sound just made the hair on the back of my neck crawl - I must have checked the doors and windows around 30 times all told. *sigh*

But the upshot of it all was, between the pain from my throat and mouth and my wound up paranoia - no sleep. Even when Stef got here and we slept through til 12pm I woke up feeling as though I'd not slept at all, he wouldn't let me stay in bed though - the tyrant.
So I had a bath and just monged in front of the TV till he went to football, then Sean came in and now I'm heading to bed, the aches and headache are just totally eclipsed by the whole throat/ mouth thing - I can barely swallow and I'm really not that interested in eating anything.
Just feel crap *sniff* Pass the Anbesol eh?!
I can't even concentrate on a book! This sux.

up 'n' down days

To recap - friday - bit ick, saturday - very ick - had quite a bad 'turn' ended up being carried upstairs by Sean, shame I crashed though - I may have heard whatever wanker stole his mates car from our drive if I hadn't... *sigh*
Sunday went to the paternal home for feeding. Was actually good - managed to play scrabble, despite flickering mental clarity and a banging headache - did kind of 'go' towards the end of the game though, quite embarrasing - pins and needles 'itchy bones' and total lead limbs, had to crash on the sofa as I couldn't make it upstairs - went very cold too - my throat has been incredibly sore ever since.
Been off and on weak and 'normal' all day today, doing the alternate hour of walking about the house and the next hour just monged on the couch thing.
Something new though - can't use my left hand properly - not only is it incredibly weak, it actually hurts to lift things, couldn't unscrew any jars or bottles or anything since yesterday - hopefully this'll go soon, just glad I have many fruit tea's in lol shame I also seem to have another bout of mouth ulcers, my most fave thing in the world...

Chocolate and alcohol are NOT good for you

Easter is great - you get 'eggs' and usually a new mug or 2 to add to the growing collection in your cupboards. Sadly chocolate and nausea do not mix very well...
Stayed at mums right through to 7.30 last night (she feeds me it's great) after around 4hrs sleep I let Stef out then went back to bed, sadly mum heard him leave and as always came out in a talkative mood. I finally got back to sleep again around 10.30ish, woke up again at 12 to find mum and dave sat on the other sofa - very unnerving!
Sadly had the whole 'nausea' thing going on too - as well as the weepy thing, watched 'the railway children' with her and ended up howling.
Joy.
Felt like dogcrap all the way into town to meet up with dad, My leg is still sore and all I wanted to do was pass out or throw up.
He had a drink waiting for me - I felt so guilty for not being able to drink it. Borrowed some money off him to see me through to the end of this month listened to one of Scottys jokes, made my excuses and then somehow made it home - literally limped upstairs and fell into bed.
Now I still have a headache, feel sick - I'm also incredibly thirsty again (which probably explains the headache) so I'm getting a drink and heading back to bed. I'm burning up and I hurt ALL over. If I wasn't so used to this feeling now I'd swear I was pregnant!
*sob* much self pity going on here right now.
I'm also pissed off because at some point later I'm going to have to try to sort the front room out because SEAN has guests this evening - they're planning on getting trashed. Again.
I'm getting a little bit sick of playing maid for him, he does nothing around the house, most of the time it looks like a warzone so when I feel up to it I blitz the place - which then sets me right back for the next few days.
*sigh*
Roll on hearing from Swinton council. At least then I won't have to watch him drink himself to an early grave or listen to anymore suicide threats.

Prescriptions and symptoms

Ok, I finally got around to writing a summation of my symptoms - this is the list up to today - who knows what next week will bring though lol

Main symptoms

• Overwhelming and persistant fatigue
• Feeling generally unwell, mainly sore throat and cold symptoms
• Poor temperature control, skipping between too hot and too cold
• Blurred vision, occasional loss of sight for several seconds at a time
• Difficulties with balance, vertigo and dizziness
• Headaches/ migraines
• Numbness/ tingling/ pins and needles in my hands
• Constant 'achyness' ranging from a dull 'background' all over aches to a sharp insistant localised pain
• Sleep difficulties
• Hearing problems
• Concentration difficulties/ memory problems/ communication problems/ head 'fog'
• More sensitivity to things like noise, though moreso with light and odours
• Walking can be painful, sometimes impossible
• stomach problems - acid/ wind etc
• Bouts of uncontrollable crying

Occasional/ more recent symptoms

• Constant thirst
• shakiness
• muscle 'jumping'
• nausea
• apetite comes and goes
• alternate craving for sweet and salty foodstuffs
• asthma playing up
• strength comes and goes (sometimes cant even lift the kettle)
• keep dropping things
• constant trips to the toilet
• slight agoraphobia
• Eczma like rash/ itchiness/ very sensitive skin

Took this list to the Dr, he then went through all my blood test results with me and explained that all physical problems that would normally cause all this had been ruled out (lets face it, I did have pretty much every blood test under the sun) so while he can proscribe things to help with the asthma as well as muscle relaxants and painkillers, I need to stop worrying that I've developed something else (boy did I feel like a hypochondriac when he said that)
At least he didn't laugh at me. My Dr is ACE!

He also had a bit of a go at me for not going to see him sooner about my financial difficulties as he would have written me a letter to the dss etc etc. In future I'm to go to him immediately if I find myself in the same situation - the thought just never occured to me, you see a Dr for physical ailments not financial problems!
Anyway, I've been ordered to go to the Dss and make them "either give me some money or at the very least a letter that says I have no need to pay for my prescriptions as it is essential I have this medication."
I felt all loved when I came out lol

ok, prescriptions:

• Novolizer Budesonide inhalation cartridge + device 200 micrograms/ dose, 100 doses
  
• Salbutamol cfc-freeinhaler 100 micrograms/ puff
• Diclofenac sodium E/C tablets 50mg, 1 three times a day
• Dothiepin Hydrochloride 25mg, 1 at night.
  

All this comes to the grand total of £25.60, being ill is not cheap m'loves.
I just love the fact that I need the painkillers but as they exacerbate my asthma I'm also having to get all this extra puffage - the new inhaler looks funky though - he demonstrated one for me, all bells and whistles - it has a dose counter, it also makes a noise and has a colour band that flicks from green to red to show you've taken the dose properly, big brother comes to asthmaville LOL I daren't not use it as stated, he'll know.

Sean had to come with me to the Dr's though - I could barely walk this morning, my left leg is fuct, I don't know what I've done to it but *shrugs* it'll work itself out.
Also spoke to mum today - it turns out she hasn't got cfs, but she probably has MS, they're doing the tests on her now to confirm it. If she has, that sux even greater donkey bollocks than this. still at least she can finally do the bird at various family members and tell 'em get ta fuck ya bastards.

Right, I am absolutely shattered so I'm heading for a bit of a 'nap' - I know I shouldn't but I'll be no good to anyone later if I don't, and I need to win this karaoke comp tonight otherwise I'll be buying no food in for the next few weeks.
That and mum has a sausage casserole with my name on it awaiting some attention...

the mansion

Went up to Sean's gaff today (ok so technically it's the parental place, but its still classed officially as his home) we went there to abuse the facilities and eat their food.

This was good, I actually ate 2 proper meals (one of fish no less) and we had a swim in the pool. Well Sean had a swim, I did a few strokes then floated around on the big rubber mat til he flipped me off it.
Me no likee the chlorine thing, had to get out because my throat burned! my eyes are still sore around 5 hours later, which is why I am not yet sleeping. I've gargled with asprin as per the beloveds orders (men!) and i'm just doing my daily symptom run up before i crash.

slightly head fogged, bluury eyedness, pins and needles, slight nausea and the promise of a blinding headache were there to ruin my afternoon, a couple of ibruprofen later, headache gone, stomach turned to a raging ball of acid though - did nothing to ease the nausea.
just sat and chilled for an hour or so drinking water by what felt like the bucket load. had food, and hour later did the swim thing.

Too achey to swim properly, though floating in that lovely warm water helped a little. my left leg decided to not co-operate though so a present I'm limping badly, possibly pulled or strained something.
Still acidy and shakey but actually tired so now i'm gonna crash, dr's app in the morning dontcha know.
He's gonna love me. i'm planning on writing up a list of my symptoms so far as they appear on my blog - try and get a kind of time line going if poss, then let him know that he may be contacted by the benefits people (probably the fave part of his job that one!) see if there is anything he can suggets other than pills for the pain etc seeing as I have no money for prescriptions etc at present.
and I need to discover a decent antacid, this burning is driving me NUTS! As is the rash - I think IT didn't approve of the chlorine either *sigh*
Lets hope I can sleep despite it.

MORE forms. *sigh*

I was warned...
They previously sent me the wrong incapacity benefit forms, which figures...
I found out when I went in on Thursday to see about a crisis loan (have I already blogged this? gah! My memory sux) ok, whatever - I got these new ones on Friday but I've been really pants the last few days which is why I'm trying to fill them out today.
I hadn't realised what a mess my paperwork was in - can I find anything? Can I buggary! So fingers crossed they accept what I've written, pass me the cash and I can then concentrate on this 'pacing' (it involves calm and patience - 2 qualities I am not renowned for...) and after todays physio assessment at the hospital I've signed up for the 'energy for life' program.
This consists of 5 consecutive Tuesdays of whinging with at least 8 other cfs sufferers in a classroom environment before undertaking some 'light circuit training' (Exercise... Not worried about that in the slightest...) The 'research study' is just some questionaires spaced out over the next 6 months so I'm not too fussed about that.

Stef and I cleaned the house yesterday (ok, Stef did most of it but it's still a lot more sparkly looking, even if I do still have the sofa covers to do) The last few days he's been really ace, I don't know what's changed - whether he's actually realised I'm not faking for an easier life or whether I was really just being too hyper critical (who? me?!) about how he's reacted to it previously - either way, I've felt more chilled with him around again which has helped me calm down a bit.
Sadly that hasn't helped with the aches 'n' stuff, but fingers crossed this physio thing does something.
Even more to the point - fingers crossed my benefits get sorted before mum's wedding I used the last of my cash doing the shopping on friday with Stef, I have just enough food in now to last me 2-3 weeks - nothing fresh sadly, but at least it's fairly nutricious stuff.
I'd best go finish filling out the darned forms before my eyes go again.

tum-te-tum

Yesterday, um...
lets forget about yesterday eh? It' didn't happen, I stayed in bed, got up, fell over, went back to bed, got up, fell over ad nauseum. Just about managed a trip round Asda with Stef at 8ish but felt really sick/ queasy when we left - don't really want to remember much else because it was a rotten day for me.

Today - woke up feeling once again as if the guy with the sledge hammer had been round. Still Thirsty and shaky, pins and needles are back in full force it seems - the last few days they've just not left, I was also shaking so much yesterday that I couldn't eat with my fork till I had it under control and I had to pick up my glass with both hands and really concentrate on not dropping it.
At least I've not had the muscle jumping for a while though - that's awful - not in a painful way, but it's very disturbing feeling the muscles in your hand 'jump' constantly for several hours and nothing you can do stops it.

I slept in again today - but I needed it, woke up again around 12 feeling so much better than I have in days - the aches I'd had earlier have lifted (possibly something to do with the painkiller Stef brought me earlier) It's glorious outside so when I've had a bath I'm going to attempt a nice gentle stroll up to the park - I'm pretty sure Stef won't mind, at least I know he'll look after me if it proves to be a bit much - but I reckon I'll be able to handle it today.
The fog seems to have lifted too, I'm not having to concentrate so hard on trying to 'hear' and understand what he's saying.

I think that's one of the worst things with this, I've always been mentally 'quick' now I just feel so stupid all the time - last night is a great example - I'd decided to bake a cake in the microwave - the room filling with black smoke because I'd left it in too long in an inappropriate container...
I've never been that stupid!
Ah well, onwards and upwards - I'll just have to try harder is all.

It's a real pea souper

Yup, fog day - I'm just tired, my limbs are heavy and I feel like I'm forcing through treacle to do anything.
I'm also having a gobble-de-gook phase, really having to concentrate on whats said so I can understand it, Stef just took the piss because I misunderstood something he said, actually - it's not that I misunderstood him - I literally couldn't understand, it's like he was talking a foreign language.
Just won't bother mentioning anything - after wouldn't want to 'annoy' him by 'whinging' again

Asthma is playing up again.
was up at 8.30 had bath, can't really remember what else i did today - oh yeah, was eating porridge when Stef got here so I made food. Just trying to avoid going to bed or sleeping, have to go to the shop and get some food but don't have the energy so I'll wait til Stef gets back and see if he'll take me.
Need to wash up but I'm having problems lifting the kettle and the hot tap still hasnt been fixed, will txt landlord again when I can remember where I put my phone. three major dizzy spells and counting - and I keep bumping into things and tripping over my own feet Tra la la - par for the course.
music is good.

Yet another shit day... dum de dum de dum

Couldn't really sleep last night - just couldn't settle, skin was too sensitive I was just hot and itchy and the duvet was irritating me.
Finally dropped off, woke up by a call from mum. Dragged my sorry ass out of bed had a bath (zombie stylee) got sean up then we went to meet mum in town.
She was late for a change so we stopped by starbucks - I had a strawberry frappachino and muffin (way to go on the cutting out dairy products lol) then went to meet her when her bus got in.

After about 30 minutes of wandering around the shops I was starting to not feel 'with it' I just put it down to needing the loo and a drink, the feeling didn't go away and I started getting snappy.
I really tried not to.
The fact that I hate clothes shopping anyhow didn't really help matters though, so instead of realising that I was feeling out of sorts, mum put it down to me getting depressed because we couldn't find anything. It's not true, I was just feeling really lousy and just wanted to get home and lie down, so after a slight scene which left me walking up King street in tears followed by an awkwardly sympathetic housemate.

We finally made it home and for the second day in a row I ended up falling onto the sofa and literally crashing in seconds. Woke up with a stinking headache (which I'm putting down to the stress and tears) and had to literally crawl upstairs to go to the loo because my legs weren't working. Coming back down was easier.
Sean had thankfully placed a drink on the coffee table for me for when I woke up so I just had a drink and went back to sleep.
When I woke up again the headache had eased somewhat but the body aches were back full force - moving hurt. A lot.
I made myself get up, grabbed the last 2 painkillers (reminder, get some more tomorrow) switched on the TV and had some toast, sean then made me some proper food and I just 'rested' for a while in front of the box, waiting for the painkillers to kick in.
I'm now 'up' still tired, dull headache, legs hurt - especially my bad knee and I'm depressed. Other than that... Well, I'm still breathing - and I have chocolate.
Roll on May.

Forms... Joy.

I've just posted section 1 of my DLA form.
I've got someone calling me in the next 5 days to help me with section 2 - I can't cope with it. It's like, my mind reads the question, I understand it - right up until I have to put down and answer, then I have to read it all over again - this loops on for maybe 20 minutes until I either just put anything down or give up in frustration until later. When the cycle begins again.
It's more than frustrating - I've never had a problem filling out forms or anything before - I even felt more of an idiot because this has been going on for weeks and I never noticed the bloody helpline number plastered all over the form itself.
Yes I'm a tit.

Amy on the free for all forums gave me this lil snippet of info too which has not brightened my day any:

Good luck with your benefit forms. I strongly recommend you get help filling them in...I used D.I.A.L for mine and they were very helpful...apparently citizens advice are good too.

I had already been turned down for my DLA once before when I got help from D.I.A.L. They arranged a home visit for me cos I was unable to get to their centre...it took ages to go through everything (nearly three hours to fill in the form) but she filled the form in for me and was really helpful.

Take a look at these links too....

http://www.bhas.org.uk/freeguides/dla-adults-physicalgrounds.pdf
All about DLA...

http://www.apachetear.net/textfiles/me_benefits_IB50.htm
this is for when you are filling out your IB50 form when you have been on incapacity benefit for 6 months (your SSP counts towards those 6 months if I remember correctly)

It is really important that you get these forms right so get all the help you can. It takes ages to get anything from them too....I applied for DLA in November, was turned down in January and they are looking at it again now (I had a visit from the doctor about it).

Also remember, that down the line you will have to fill in another, different incapcity benefit form (IB50) if/when you go on to higher rate benefit and you may have to have a medical....I did....

it's hard going. Especially DLA...dont expect to get it straight away...I've applied twice now...first time I didnt really know what I was doing and was turned down...this time I had help from D.I.A.L and they still turned me down! I know more about it this time so I'm asking them to look at it again for me.

You have to bear in mind the basic things that you shouldnt be able to do to get DLA....if you can prepare and cook a meal for yourself you cant get care component...if you can walk 100 yards (I think thats what it is) you wont get mobility component....you have to be very careful with the way you word things and always tell them about the things you cant do not the things you can.

See, the problem is - some days I can do those things, other days I can't - and I can't give a decent guestimate on the frequency of my difficulties either - I can go for a few days of being a 'normal' fully functioning human being, to the next few days unable to even get out of bed to go to the bathroom without help!
But apparantly if you tell 'em that then you don't need help - which is BOLLOX!
Gah, got the shakes so I'm going back to bed again - quick run down on today:

Stayed at Yogi's last night (his mum wanted me fed *grin*)
So up at 8.30 in zombie mode, brought home - couldn't make it upstairs so crashed on the sofa.
Up again at 12, lurched into kitchen got drink and rang helpline number.
(woohoo, cognitive ability returned) Sounded like a retard on the phone, had to check the forms in front of me for my address and phone number, groping for words... Ugh - I hate using the phone to strangers these days.
Forced myself to walk round to the post office (for the dla peoples information I stumbled no less than 5 times) to send off the first part of the form to ensure my claim is taken from february 7th, else I'd have to start this all over again and lose money if the claim is successful.

problems going to the loo (I'll spare any readers the details) shakiness, sore throat, blurred vision and ACHES.
That about sums it up for now.
I'm bloody hungry too and there's nothing in that doesn't need cooking *sigh* It'll have to wait, I just haven't got the energy today.

Work visit

I'm still at my pc, I've been here for the last hour or so since being awakened by a call from my mother.
Apparantly she's being referred to a specialist because her Dr thinks she has CFS too.
I'm not surprised.
Now I know what it's like I can think of so many incidents from my childhood that indicate she had it - I'm also ashamed for the numerous occasions I called her a hypochondriac behind her back and prayed that I wouldn't grow up to be just like her.

I think we can safely say I got my come uppance there - now I just hope I'm as strong as she must have been back then to cope with 3 kids even half as well as she did feeling like this all the time with no help, no recognition and less than no support from family and friends.

I'm just trying to summon up the energy to clear some of the crap from the front room so Steve and Racheal have somewhere to sit when they come later - I'm still tired, the aches are down to a dull murmer though which is good. The headache I awoke with has eased back as well.

I'm now going to get some porridge (flavoured with raisins and honey) and another pint of cordial before I get in the bath. Then I guess I should have another bash at those forms.
Joy...

Insomnia city

Since my last post I've done nothing but watch dvd's go to the loo, fetch drinks and check online forums and my blog lists - alternating between all three as my eyesight allows.
It's been playing up a lot recently and I'm so dry all the time - eyes and mouth. It probably explains why I'm so thirsty though, my skin is dryer than it's ever been in my life, my lips are constantly cracked and flaky - I've even developed some kind of eczma type rash all down the back of my legs and my bum!
(I know I know... TMI)

I can't sleep - I'm so tired I'm internally shaking (though I was doing that before the headache kicked in so maybe it's all part and parcel of the dropping things phenomena) but I can't sleep, my mind is racing. I went to bed at 2 but then after lying there tossing and turning, fruitlessly trying to find some position that eased the aches a little - I gave up and turned on the trusty pc again - I can always find solace online (assuming I can handle looking at the screen long enough)

I've got a home visit from work tomorrow. This has confused me - I was informed that they've stopped paying me SSP, I've even recieved the written confirmation of this (finally) yet my boss and his superior are still coming out to do a home assessment on me.
Ah well, whatever makes 'em happy - it'll be someone to talk to other than a hungover, depressed housemate.
Which is nice.

I need to finish filling out my benefit forms tomorrow so I can get 'em posted, I just keep forgetting about them - not a good thing to do as they need to be in by march 21st at the latest.
Perhaps I should also use this blog as a reminder list - I never remember to stick one in phone like I used to.
Feck it - I'm gonna play bejewelled till I crash, it usually helps.

Whoops

Well, today appears to have made up for yesterday *sigh*

Yes the majority of it has been spent lay down, I have a sneaking suspicion its food poisoning though - I should have known not to use those berlotti beans, only a few days out of date but *shrugs*

Woke up at around 10.30ish again (at last! a pattern?) PAIN all over, I figured that was just a healthy burn from all the excersize I did yesterday though - Till I tried to get up.
MAN!
dizziness, nausea - lying back down didn't help because the room started spinning, tried to get back to sleep but failed miserably - the most that happened was another of those semi-dreaming states I get sometimes when I'm too awake to sleep but too exhausted to get up - except I didn't feel tired for a change. Just ill.

After several hours of this I lurched downstairs and got a drink, 2 pints of cordial later and I felt a little better - could actually swallow and my throat didn't feel so sore. Still burning up though and my lack of balance has not improved any.
Not feeling so sick now, though a slight nauseousness is still there. I feel like I'm going to the loo every 5 minutes with a few drinks to top up my system in between.
Perhaps forcing myself to move around isn't the best plan but I am too thirsty to care, and since for once I can move whilst feeling this shit - I'm doing so.

Right my eyesight is going again so I'm heading back down to my impromptu bed on the couch - I refuse to get into my actual bed until a reasonable bed time - I spend far too much time in it as it is! At least by camping out downstairs I can pretend I'm 'up'.

Something new

I've just recieved a shedload of bumph from Caroline at the Bury M.E. support group - and I do mean a shedload - it'll take me a while to wade through this little lot, but what I've scanned so far looks good.

I've also decided that since I'm crap at keeping a written diary of symptoms etc - instead of just whinging on here I'll keep an account of day to day stuff, symptoms, activities etc etc - lets see if any kind of pattern emerges.

(and it gives me an excuse to keep coming online lol)

So... today:

Up at 10.30, usual body aches but no headache (hurrah!) actually hungry, feel like I have enough energy to tackle the kitchen and go for a walk (woohoo!)

Will add more later - I'll even keep a record of how many steps I take each day seeing as my walkers pedometer finally arrived (I'm such a sucker for free stuff)

Update:
After a filling meal of beans on toast and a cup of chinese tea, I walked to the Asda and back (3hr round trip) I felt quite ill when I got back - my leg still aches, but I'm also still wide awake at gone midnight - even despite messing about the house all night, I've barely sat down.
While that's good today - I'm dreading the knock on effect over the next few days - ah well... Best not to borrow trouble eh?!
Made a very tasty vegetable and bean soup - still got nearly a full pan left, methinks I'll be feeding well tomorrow, I've also got another carton of cherry tomatos, I think perhaps I should have got more - I eat 'em like candy!

...Oh and my pedometer count is 101144 today.
Lets see how often I can beat that! (till the battery dies anyhow)
Now I need to try and sleep. *sigh* wish me luck!

Comic Relief

The good news is that today I've finally recieved the written confirmation I need from Barclays to put forward my claim for incapacity, sadly it's about 3 weeks later than I needed but fingers crossed it all gets sorted before mums wedding at the end of April.
If it does then I can still go to Spain to see Trish and Angie for my birthday and just take a break from everything.
I need a break - for real.

It's all just getting to me so much, I nearly broke up with Stef on Tuesday.
It was like the icing on the cake, I'd told him all the crap I've been getting from mum and Sean, I'd filled him in on the money situation - not much of a response...
All I really wanted was a hug and a sincere "Don't worry, it'll get sorted"

Fair enough, things do sound less stressfull and fairly petty when I try and verbally explain what's bothering me, but then he started bitching at me to do this that and the other - no sympathy no empathy - just orders.
I know he's the kind of person who expects action not whinging, I'm pretty much the same - but at least I know that sometimes people need to get things off their chest! If you are offering suggestions then at least make it sound like suggestions instead of laying down the law - and a hug is always a good thing.

It started when I was trying to fill in the benefit claim forms, he got very terse with me so I told him to stop shouting at me. He then went into the kitchen and left me to it.
We were getting ready to leave the house when I tried explaining how this illness makes me feel - how I hate it and that all this stress just makes it worse - he told me to shut up, apparantly it gets very boring listening to someone whinge all the time.

Excuse me?!
Thanks for the support and understanding there. Nice to know I'm not all alone with this. Half of the reason I'd started my explanation is because I feel as though he thinks I'm making most of it up - I just wanted a little reassurance from him.

I think that's the root of a lot of my insecurities with this - I feel like a hypochondriac so how can I expect other people not to see me in that light?
It's awful, I'm lucky in that I can still do some things - I've read and heard about people that can't get out of bed at all because of this. But because I can do some things, I look 'normal' to people, how do you explain to them how it feels? The sheer effort involved in doing those things - mentally as well as physically.

Every day you wake up and mentally push at the fog around you - testing the boundaries to see if you can get up and do something constructive today - you know it's not happening if you don't even have the 'energy' to do that.
Your limbs are too heavey to move and it's like you don't care, everything is just too hard and so what.

But that kind of explanation just gets a response of "So? I have days like that, you just get on with it and stop being so lazy - fight it"

If only it were that simple - it's not. I can't explain it for my own satisfaction - how the hell can I explain it to other people? The lack of decent information on this illness just makes everything that much harder - especially if you can't stay concentrated on the task long enough to do any in depth research on it.

Ah well...

I forgot that I recieved a letter from the physio department of my hospital last week, I need to call them on monday.
They want me to take part in "a research study investigating what factors contribute to an individual's level of chronic fatigue and/ or pain."
Hopefully this means I'm about to start some form of treatment - fingers crossed it works.
I've had to stop taking the pills as I can't afford any more at present, on the plus side at least now I'll know if they've been having any kind of effect...

HELP!!!

J can finally stop whinging at me.
I've spent the better part of today searching fruitlessly online for an ME/ CFS/ PVFS support group or helpline number.
Nary a one to be found in my area - and by my area I mean the city of Manchester. It would appear that I am obviously the only M.E sufferer in our teeming metropolis. So much for getting some help with the benefits forms *sigh*
I've emailed a few places and posted requests on a couple of forums but I'm not really holding out much hope on the subject. In the meantime I'm attempting to answer some of the 'questions' on these forms.
Perhaps I should move to Bury or Tameside - they both appear to have extremely active support groups. I just hope one of 'em is willing to try and help me out.

Depressed, need I say more?

Things have really started going to shit.
Work have stopped paying me, they didn't even give me any warning! My boss actually rang me to check up on how I was doing the day before I found out - HR have yet to inform him that I'm no longer on the books with them.
It's taken 2 weeks of none payment for me to discover I am now basically penniless, no wait - Less than penniless - I still have a loan to somehow pay and a £1350 overdraft. Joy.
I can't fill in the dla or incapacity forms because they are not structured for a chronic fluctuating illness, untill I get them filled out, I'll have no money - and if I don't fill them out correctly then they'll reject my claim and I'll still have no money.
My standing order for the rent was returned so on top of owing rent this month I'm now going to have bank charges, this means I am finally at the limit of my overdraft and they won't let me extend it.
I can't go out and buy any more food in... Things are looking bad.

I've tried finding an M.E support group or an advice centre, but the only ones near me are in Bury or Tintwhistle - neither of which are in Manchester itself.
I have enough problems getting to my mums on public transport and I know my way round there! I'm all alone here, my housemate has a drinking problem and is suicidal and everyone who would like to help me can't because they are too far away and in a similar financial position themselves.
How am I supposed to sort this out by myself?!

Every website I can find lists advice centres or support groups everywhere but Manchester itself - it's a fucking city for crying out loud! You are not telling me that I am the only person in here dealing with this fucker!
I know I'm not because my mum has it too, my dr has at least 3 other patients with it - he's told me about them.
I wonder if he'd be willing to give me a contact no. for one of them to see if they can help me..? I know I'm screwed otherwise, if only there were a way of getting help online or over the phone, sadly every resource I've found asks you to make an appointment and I can't get there without help.

I can't go out, I get dizzy, panicky - I'm paranoid as fuck about having a 'turn' when I'm on my own - These days I don't go anywhere alone unless I know I'm being met at the other end.
When we do go out it's always somewhere within easy travelling distance to home.
Anyway, even if I could get there I now can't afford the bus fare.
Perhaps I should just give up, I just don't have the energy for all this, stress makes it worse and with all the shit I have to deal with in the form of Sean, mum and money - quite frankly I'm at breaking point.

What to do?!

I'm really confused right now.
My Dr has just managed to make me all suspicious of Ben (the lovely acupuncturist I've been recieving treatment from) He didn't come right out and say that he thinks he may be conning me, but he danced around the issue enough that it's put all sorts of thoughts in my head.

Now it could just be a western medical practitioners mistrust of an unknown.
Or not...
His main concern was not that I'd taken it upon myself to seek this kind of treatment, but that the practitioner in question has also supplied me with these pills that he has no knowledge of.
As far as he can see I'm ok to continue taking them - he stated that I would be unlikely to recieve anything that could do me harm.

The thing is, I'm skint - totally. Acupuncture costs a fair bit, the pills are doled out in an amount suitable for only 24 days and they cost quite a bit too (considering my financial situation) So even though the last couple of days I've been feeling much better - it could be attributed to any number of things besides the acupuncture and herbal remedies.

A thing he was quick to point out.

And he's right. I've also been taking the Dothiepin for a month now so that should be kicking in which could be what's helping me sleep. My diet has changed, I've been steering clear of caffiene and dairy products, I've been drinking twice as much water as usual and I've been forcing myself to do things instead of just (literally) taking it lying down.

His suggestion is to keep taking the pills as I've paid for them now, continue the treatment if I want to (he has another patient who has acupuncture via the hospital and it apparantly helps her) but if after 4 or 5 treatments I see no real improvement, stop wasting my money and look at other alternatives.
And if these don't work or I don't buy any more when they run out and Ben starts urging me to try alternative herbal supplements, I'm to inform him straight away.
Which sux.
I came out feeling as though I'm really stupid. Like once again I've allowed someone to take advantage of me. It wasn't just what he said, it was the pity and disgust on his face when I started telling him about the acupuncture and pills.
I hate feeling like a complete idiot.
It feels even worse because I like Ben, he's a really nice guy - except now there's a little voice in the back of my head saying "yup all good salesmen are nice guys, even if they don't have a clue what they're talking about"

I can't help thinking of Polly (AKA Pondscum) lovely guy, heart's in the right place - can sell anything to anyone. He used to work in a computer store - knew less about Pc's then me. His sales record was 100% though.
I used to watch him in amazement - he'd be blagging this poor family and even when they brought it back as unsuitable for their needs - they still asked for him and he'd sell them something else! Usually for twice as much as the first thing.

So you can understand why I'm confused - and a little worried.
I don't want this to be a temporary 'fix' I've had one sleepy fit in 3 days - and that's despite cleaning the house from top to bottom, cooking full meals and taking trips into town, something I've had problems doing for months.
But I also don't want to be dependant on tablets or expensive treatment because I really can't afford it.
*sigh*
Feck it - I'd best get this dinner on the go, my beloved is going to be setting off soon and I want everything to be done when he gets here.
Valentines eh?! Whoda thunk it...

Doing something positive

After a bit of nagging from a certain someone I can see that I've been going about this sleep thing all wrong.
Since the only thing I have any real control over is the time I set my alarm for in a morning, that's what I'm going to do.
Yesterday I was up and feeding at 7.30 (As both mum, Stef, Claire, Am, Sean etc etc ad nauseum, can vouch - I'm soooooooo not a morning person. This is gonna hurt for a while) today I was up at 8, me no likee.
Ben (acupunture guy) has given me some herbal stuff to take (in addition to the Dothiepin, supplements, painkillers and pill I already take) so in total that's 15 different tablets I take every day plus however many painkillers I need that specific day.
Did I mention I hate taking tablets?

I do feel brighter today though so hopefully that means the acupuncture is taking effect - I guess it's too early to tell in reality, but my fingers are crossed and I'm going to head into town with Sean shortly to get some shopping and go see people.

I've had to make an appointment for monday with the Dr. as my sick note ran out yesterday and I hadn't realised till work called asking for the new one, I also recieved my Incapacity and DLA forms (disability living allowance) and I'm trying to get an appointment with the local rep so she can help me fill it out as it's a bit of a bugger. So while nothing of any real interest is happening to me this week, I'm at least doing something.

Gah!

I can't think.
I want to blog - I've been sitting here for over 10 minutes staring at the screen, I had a shitload of stuff to rant on - not the least being this BASTARD of a headache that WON'T LEAVE!

Lets just say it's been a bad day.
My mind is all over the place, I've watched the whole of Dark Angel season 2 and most of SG-1 season 3, turned on the tv and watched charmed and Splash! but I'm feeling restless, I'm too whacked to do anything, I hurt and most of all:
I HATE THIS!

I feel like all I've done for the last couple of days is whine about feeling crappy.
I thought acupuncture was supposed to help?!?!

Yes, I feel shitty.
Again.

I need to call J back in a bit since I just ended up crying at her down the phone so now she's going to be all concerned - not my plan at all.
I just can't help it - my little moan the other day must have been prophetic - or maybe I just realised subconsciously that all the signs were in place for a bad 'un.
It doesn't help that it's the hormonal week anyway. Even now - all I'm doing is typing and the tears are starting, my throat is closing up etc etc etc

It doesn't matter how I try and tell myself there's nothing wrong with me, I still cry - this is my 3rd attempt at blogging because I get caught in this fucking CRAP self pitying loop.
This is why I originally had a personal blog - so I could spill this kind of verbal excrement where no-one can see.
But you know what?
I don't care anymore.

I've always - my whole life - managed to handle things by shoving it to the back of my mind, it's like I have a dark room in there where I can pack the bad shit up and chuck it down a very deep well.
Just lately it feels like that well has overflowed and all those little packages are coming undone.

I'm having nightmares about shit that happened years ago. I'm crying about crap my EX said or did and that relationship ended over 3 years ago.
I wish I could just blame PMS, that would make things so much simpler.
Most of all I wish it would just stop.

Roll on tomorrow. It'll be better then.

My first acupuncture appointment

Having M.E. sucks great big hairy donkey bollocks!

I do make a conscious effort not to moan about it in general - to anyone. If I'm honest I try really hard not to even think about it.
But I've had a long chat about it today and so many things are buzzing around in my mind I need to put it down somewhere, I've kinda lost track of my blog being that place the last few days - weeks even, I get so engrossed in the lives of others that I've not had to really think about mine, except in a general way.
So today, this is all about me.
I always write on the fly so I hope it doesn't turn too maudlin even if it is a whinge, but this is in lieu of someone being here to talk with about it all.
I can't talk to anyone about it really, I get too upset and give up trying to explain myself - even when I think its important.

Basically this thing has taken over my life. I've gone from being the kind of person who's always on the go and never stops, to being the kind of person who never even gets close to starting.
To be honest I've gotten to the stage of not wanting to do things because I'm afraid of setting it off.
If I have a bad day - it's a really bad day, by not exerting myself in any way I can avoid bad days.

If I feel even the slightest bit tired, I'll just stay sat on my arse doing nothing - not even the dishes. And I hate it. I hate this weak whingy little piece of useless nothing I'm turning into.
It's frustrating, depressing and at times feels completely hopeless - it's even worse after a couple of good days, when I feel positive and do things normally without even thinking about it, if I have a bad day then it sets me right back for weeks mentally.

I don't like to go out alone anymore, it's not so bad going to a place where I'm meeting up with people, but I won't go to town alone. I can't stand crowds anymore, they stress me out - I used to work as a bouncer in a nightclub environment ffs, crowds never bothered me in the slightest...

This whole thing... It's just rotten, I feel like a complete hypochondriac everytime I mention something aching or such and such a thing isn't 'right' because just lately that's everything. I try and act 'normal' but I hurt all over pretty much constantly - it's usually just a dull ache, a nagging pain that I can put to the back of my mind and 'ignore' but sometimes it flares up in 1 or 2 places, on a bad day it flares up everywhere.

When I'm talking to people it's like there's a slight fog between me and them, I get what they're saying and I can act like a rational person, but I'm not 'myself', I know it - but very few people I hang with these days have known me long enough to see the difference.
On a bad day I couldn't hold a conversation with a goldfish.

Aminatta noticed straight away, but she's known me longer than anyone. ugh... The tales that girl could tell...

Basically, it's a memory thing more than anything else, it plays tricks on me - only little things, but they mount up. For example, I'll go to do something like put the dishes away - then instead, stand there staring at them wondering what it was I intended to do.
It's all stupid petty little things like that but it's in every aspect of my life and they're whittling away at my self-confidence, my ability to be me and just get on with things.

Stef actually said the other day that I shouldn't stop doing things because of this, I should do them anyway and if I have a 'sleepy fit' just go with it.

I'd like to do that, I really would.

But I have a real mental block - I'm almost terrified of bringing one on - it's stupid, I agree with what he said 100% but I can't seem to put it into practice. Instead I just shy away from doing anything - including housework, and then hate myself for being a 'lazy cow'.
I'm just glad he's here to push me and 'bully' me into doing constructive stuff, I may complain and act all hard done by - but I do appreciate the fact that he cares enough to do it.

Talking to Ben (the acupuncture guy) today has helped a bit. I feel a little more positive, I don't know if it's because of the session or because I'm finally doing something constructive myself to combat this - either way it's a good thing.
He seems to think I could have had this longer than the 6 months I've been off work with it, my history of giving up on things is an indication apparently, I've always gone through 'phases' of feeling fed up and tired and it takes me forever to shake off an illness.
At those points I've usually just got a new job or left my course or moved house - this time my physical situation became so bad I needed to seek medical help instead of just blaming it on whatever stresses were in my life at the time and trying to change them.
I'm inclined to agree when looking at it from that perspective, makes me sound better anyhow lol

I think if I can do something to remedy my horrendous financial situation I'll feel even more positive - it's just whenever I start talking about this to anyone I can't help thinking about how it's fucked everything up for me and I get all stressed out and depressed.
I had a large sum in savings and was looking forward to finally buying a place of my own that no bastard ex could take off me, I had a pretty good income, no overdraft and the only debt was one loan - of under £1000.
Now, within just 6 months, I have NO savings and I'm constantly worried I'm going to go past my overdraft limit of £1000 through the financial commitments I made within my previous income - this was especially true when I was trying to sort out housing benefit and the landlord put the rent up... It just sux.

Basically, I came out of the clinic feeling positive and slightly more awake than when I'd gone in, after the horrendous journey home (Swinton to Newton Heath is a pisser of a journey on public transport) I felt like a wrung out dishcloth and more depressed than ever because my house is a shit tip.

I'm now going to have a Dark angel and SG-1 marathon followed by a hot bath and a decent tea.
That should kick the self-pity back into touch, I may even attempt to do some cleaning then - but I doubt it.
Maybe tomorrow...

Dothiepin

I've started my new tablets. Unfortunately it seems I'm going to need to find another way of trying to sleep at night because on first test, they don't do shit for me. After lying staring at the ceiling in the dark concentrating on my breathing, re-arranging the pillows, my sleeping position... Well, after checking the clock and seeing this had been going on for 3 hours I got up.
Still can't concentrate online though so I'm for the Tv.

Bed, Again...

Right, I'm for bed again - I don't know if its a new twist to my being ill, since that damned cold I've been bad again *sigh* though it could be that my monitor is on its way out (good job I have a spare) either way, I can't stay online too long the screen makes me feel nauseous and dizzy and I get headaches - Boo *sniff* means I'm not using messenger either at present so now I have no contact with the outside world, just as well I'm too tired to really care.

Fecked

I'm supposed to be finishing cleaning my house today but I can't settle on anything - I started washing the pots and ended up taking the wheely bin out instead(?) Then I went into the front room to sort the sofa out but moved the chairs from the kitchen to under the stairs instead so I could sweep the kitchen floor, instead of which I took my trainers upstairs and hung my coats up.

Still, at least I'm getting little bits done I guess. My mind is all over the place today and I'm feeling really tired again but I'm forcing myself to keep going.
Ugh, I'm going for another brainless wander around the house, I just can't sit still... I'm so tired! Why can't I settle? This is doing my nut in!

New years day

Woke up aching like a fecker, been totally brain fogged all day with no clue what I'm doing from minute to minute. I've ran the bath twice, moved little bits from one side of my room to the other and back again, watched some crap on the tv and had a sleepy fit.
At some point I will make something proper to eat as I'm guessing that may be a contributing factor to my ditzyness, I'm thinking J may like to feed soon also - you never know lol
As soon as I get a spark of concentration going I shall whip up a feast (ok, it'll be a chuckit - tasty though) in the meantime I shall continue to wander around the house aimlessly listening to the baby monsoon outside.

Feel the frustration

I KEEP DROPPING THINGS!!!

It's starting to piss me off now. At first it was just my phone or some random object I could explain away by cold or slippery hands, but now it seems to be happening all the time (ok, slight exaggeration - but it's very frequent) I'm thinking this flu bug has set me right back to where I was 3 months ago.
I'm getting the whole pins and needles thing everywhere, I've had a constant headache since I came down with it - and I think I can forget about having a decent night out because the sleepy fits have kicked in again.
Yup, I had one when I was at yogi's Christmas day - I ended up just monged in a chair for about an hour. Then last night at the party over the road I dropped a full glass (thankfully plastic) all over the kitchen floor - covered both myself and Colin in orange juice, then not 30 minutes later I had to hightail it out of there (ok, lurch out of there) in order to get home before I 'passed out' again.
This is depressing - not to mention embarrasing.

a lovely new twist

I have developed a new and interesting inability to clean up without breaking things. Cool huh?!
I started to clean up the other day and stopped after dropping 3 plates one after the other - that's also after I managed to throw a small one to the floor when getting something from the cupboard.
Today, I've just broken 3 glasses.
Fantastic.
At least I know what I'm going to be wanting for my birthday mum - you've got until May to help me find a new dinner service - lets make it a plastic one eh!?
Seriously, if I didn't already know there was something wrong with me I'd be begging to know what it is.
Lets just say, from now on all attempts at cleaning will be performed whilst wearing my steelies.
Thank god I bought a brush to go with my new mop and bucket set while I was at IKEA...

Needless to say I have stopped the tears of frustration, come upstairs to soothe my soul with a blog - nothing like feeding an addiction to put things right with the world is there? I'm almost beginning to sympathise with smokers, I'd be climbing the walls without a pc right now.
(but I still refuse the dirty lung killers sway in my house... ugh!...)
I'm guessing its possible the tunes may have something to do with my current level of calmness though, a bit of the old Fleetwood Mac to bring me back to myself, pretty much always a charm in itself.

Think it could also be a touch of the come downs too, was a really good day (and night) yesterday, then I come home to a freezing cold, empty house with a congealed and messy kitchen.
Talk about a contrast.
Right. Guess I'd best go down and clear up that glass while I have the energy, then try and set the rest of it to rights - preferably without dropping anything else.
Or someone could just come round and shoot me - either/ or sounds good to me.
(Oooooooooooohhhh... Can't you just WADE through that self pity...?)

realising reality

Just been to the Dr's.
I'm more than a little gutted right now, on the plus side (thinking positive) I have a prescription for more drugs (::sarcasm:: Noooooooo, really, its a good thing - my chemical intake has been slacking of late ::/sarcasm::) on the downside, he sat and had a long chat with me about this.

Apparently post viral fatigue syndrome - otherwise known as M.E (Myalgic Encephalomyelitis/ Encephalopathy) can take up to 4 years (four fucking years!) to get over - not fully recovered mind, just better.
He was a bit concerned that I seem to have got it into my head that I'll be fine in another 6 months or so, enough to go back straight into full time work anyhow.
He told me about 3 other patients of his who have this, 2 of them are working again (albeit only part time) after at least 2 years on the sick.
One of them must have a very understanding boss is all I can say because he said she can be fine for a couple of days then one day she'll get as far as the bus stop and have to call in sick cos she's too shattered to face the rest of the journey.

I can so relate, I had to cancel my appointment to see him last week because I was too shattered to walk the 10 minutes up the road.

I told him I was thinking of joining a gym - he vigorously vetoed that idea, for several months at least. He suggested I get a dog, being forced to take a short walk every day will help, the key being gentle excersize. (uh huh, like I'm going to voluntarily take on the care and well being of another living thing... I couldn't even keep goldfish alive!)
But I have to force myself to do it - whilst not doing too much.
How do I gauge 'too much' if I'm shattered and lethargic to start with?!

For some reason he kept repeating the fact that it's not my fault... methinks at least one of his other patients has had a 'thing' about that. I know it's not my fault, its just some punishment for being too great *grin* someone up there obviously feels the need to try and keep me down.
Bastards.. Well tough shite, wont work - I shall do this physio etc (as soon as they get to me on the waiting lists) and I will be back as a productive member of society well before 4 years are up - I'll give it the 2. Tops.

For the next 3 months at least I will be on one 25mg capsule of Dothiepin Hydrochloride every night before bed. The lass at the hospital described these to me as anti-depressants (a fact not designed to fill me with joy, I don't consider myself to be depressed, well, not enough to warrant drugs anyway) Basically she said they are so low-level that they mainly get prescribed for the side effects, which is a pain suppressant and helps induce drowsiness - therefore aiding sleep.
The plan being, I get a proper routine sorted and 'train' myself into getting a decent nights sleep, this should in turn help me sort everything else out.
It all mainly comes back to diet and sleep.

Somebody understands!

Just got off the phone to Katie at occupational health, I so wish I'd spoken to her before.
She's had this fatigue syndrome before and she knows what its like for me.
I'd started to get back into the mindset of believing It's all in my mind and that I was just being lazy, which was starting to really depress me and knock my self confidence (to say the least) Lying in bed all day isn't helping.
Having somebody describe to me just how I feel without me saying a word was a kind of relief - I'm not a total hypochondriac, it's not just me - it's a physical and mental 'malaise' that I have no control over.

The fact that she got over it helps, she can see all my notes and she says that while she got over it in 18 months, it may take me a little longer because I appear to have it worse than she did - but at least I've had confirmation there is an end in sight, and once I start this wellness clinic the specialist has referred me too - well, fingers crossed it'll help me get over it even quicker and I can get back to being me again.

It really does make a difference to speak to a person who's been there. She quite vigorously suggested I take a 'convalescence' somewhere warm for a couple of weeks (if I can afford it) as she said doing that was what finally helped her 'turn the corner' and like she says, even if it doesn't work for me - at least I'll have had a nice relaxing holiday. She's also suggested I go swimming once a week (if I can find someone wiling to go with me... Mum...? *grin*) Not to try and do lengths or anything, but just the floating and general light exercise should help.
So, come February and the return of cheap flights - Madrid ho! Already had Trish suggest this to me as a possibility if I wasn't back in work, well - looks like I wont be back in work for another 6 months, this being the case... I'm going to try not to get depressed, shake off the 'I can't' attitude and start to do things.

Hospital Tests

I had a hellish day today.
I can giggle a bit about it now, but at the time...
I left the house at 8am, I was feeling quite crap as I'd made myself stay awake so I would not miss my hospital appointment, one of the problems with this whole 'sleepy' illness thing is I appear to have lost the ability to wake up when an alarm goes off.
I stood at the bus stop in the rain for around 20 minutes enduring the mindless gossip of the group of 11-15yr olds stood smoking and spitting alongside me
I could feel myself turning into the 'disapproving aunt' type, my mouth getting more and more pursed as I saw that the youngest looking boy was in fact smoking a spliff and was handing it around amongst them - obviously using it as his tool to gain kudos amongst his peers.
It was with quite a large amount of relief I watched them all get onto a bus other than the one I was waiting for.

I got to the hospital, only to realise the stop was nowhere near the main entrance, I walked into the building through the nearest entrance and promptly got lost trying to find outpatients B. I finally made it in time for my appointment - not really a problem seeing as I had to wait before a nurse came and took me to be weighed.
The appointment itself was great - The woman I spoke to was both cheerful and understanding - and very thorough!
I was poked, prodded, tapped all over with a rubber mallet thingie and reduced to tears when interrogated about how this has affected my life, she then wrote everything up - assured me that while it looked very likely I had post-viral fatigue syndrome, it was unlikely to be chronic as there were many things we could start doing now (depending on the waiting lists) I do NOT have fibromyalgia as previously suspected (YEY!) and she would be sending a full report to my doctor regarding treatment and recommendations.
That has to be the most thorough and informative non invasive check up I've ever had.
Then I got packed off with a tissue and a smile to have some blood taken for tests.

I got downstairs to Outpatients A, was directed to a box on the wall where I took No.89 and sat down with my book to wait to be called (it was hot and very busy and the nurses looked far too overworked and harassed to be as nice as they were)
My number finally got called after about an hour or so, I went into the room sat down and watched with mounting horror as she started piling up the plastic receptacles for my blood.
after she'd selected about 6 and was still going I rather tremulously asked if I really had to fill all of them - she looked at me over the rim of her glasses and pointed at the 4 cards I'd been given to show her "that's what they've asked for" she said.

I at this point began to feel a little sick.

As is the same for most people - needles scare me, I've had so much blood taken in recent years though that I no longer whimper and cry at the sight of 'em - but it's a close run thing each time.
I sat there gathering my courage together and steadfastly looked away from her continually growing pile and tried to think soothing thoughts whilst regulating my breathing.
She finally looked at me properly and noticed my distress, was very kind and tried distracting my attention by talking to me as she inserted the tap.
After about the 4th one started drawing, I could feel my gorge rising - again I attempted the soothing thoughts and breathing technique, but by the 8th or 9th I was dry heaving as she hurriedly tried to finish off before I passed out.

As she was on the last one - after reassuring me that "this one's only a little one, soon be over now" Some jerk started calling for her attention asking why he had to wait as he had to be somewhere else etc etc etc - I was there feeling as though my life was being drained away - obviously unwell, and this WANKER was trying to draw her attention away and therefore prolong my suffering, thankfully she sent him off with a flea in his ear and took out the tap whilst I sagged weakly back into the chair - she grabbed me just as I felt my eyes roll up and I fell forwards onto her lap.
A second or so later, resting my head between my legs and coaching my breathing, I could hear the concern in her voice as she commented on my total loss of colour, someone else curtained off the area I was in and a Dr arrived with a male nurse, they transferred me from the chair to a trolley - someone else got a fan from somewhere and I had water pressed upon me with an order to drink.

By this point I was so embarrassed and I couldn't stop the tears - which embarrassed me even more.
I just kept apologising for taking up the space when they were so busy and getting told not to worry about it, just rest easy for a bit, after about 10-15 minutes I was able to make myself sit up and actually drink the water they'd given me, but I couldn't use my right arm as it had gone totally numb, to make the embarrassment just that little worse, I had to also go and get a urine sample when she pronounced my 'colour' better, the nurse watched my bags etc as I lurched out to the toilet, people swiftly moving out of my way as though I were carrying some awful disease - When I saw my reflection It shocked the hell out of me.

If this was me with better colour - what the hell had I gone like before it returned?! I kid you not - I truly looked vampiric - all I needed was the teeth and a small dribble of blood from my mouth to complete the look. Because of the crying my eyes were glowing red, my lips were red through being bitten nervously and my skin was the kind of chalk white you only see on a dedicated goth.

I finished my business, went back to the nurses station, retrieved my bag and lurched through to the cafe still feeling as though I were going to throw up or pass out or both. All that was in my mind was the need to get out of there. In hindsight I should have just stayed longer, lay down and waited without embarrassment. But - hey, I'm not the most sensible of people on occasion.

I stood looking at the remnants of their stock at the cafe, trying to make some kind of decision as to which would help me the most quickly without throwing my reflux motion back into action. I grabbed a ginger slice and waited at the counter, virtually unable to stand while the woman at the till (no doubt a lovely person) took forever to serve the 2 people in front of me.

I must have looked about as bad as I felt as the other lady behind the counter had been eyeing me with some concern, whilst the lass at the till faffed her way through the other orders, she asked if I wanted a drink - told me to go and sit down and she brought my things to me and took the money at the table.
Very gratefully, I sat consciously controlling my breathing and sipping my tea, looked at the clock and realised that I'd only been at the hospital for 3 1/2 hours. After about another hour of this, I still felt like shit but figured the sooner I got home the sooner I could actually pass out. I even felt rough enough to go through my phone in an attempt to think of someone who could come and get me. Why do most of my friends not drive? *sigh*
I got out to the bus stop and managed to embarrass myself further, about a dozen messages came through from J so I called her, the second she asked how I was - yup, tears. Again.

Bless 'er, she handled my almost hysteria quite well.
I walked away from the crowded stop and the prying eyes to a quiet side of the building and squatted against the wall as I told her about my 'ordeal', she understood that I'd be in no fit state to go for the meal we'd planned and managed to jolly me back up into an almost goodwill state again.
I went back to the stop caught the bus and spent the entire journey almost rocking back and forth in an attempt to stay focused - telling myself I was nearly home.
I finally got home at 1.30pm and literally crashed on my bed fully clothed.

I woke up at 6.30pm to a phone call from my mum wanting to know how it had gone (she'd also been to the hospital today - she has to go back for a mamogram as they've found a lump which is a little worrying) I told her about it, she told me to go get some food, a sentiment echoed by both my gran and S when I spoke to them not long after. So I rang the chinese on the corner of my street, ordered a lemon chicken with fried rice, made a cup of tea and went out to collect my food.
I managed about a quarter of it along with an episode of the Simpsons and the west wing before I had to go back to bed. I'm now awake again - still feel like crap, but at least after the bath I have running and another cuppa I should feel a bit more human.
I'm now also able to think back to today - yes I'm embarrassed about it (no reason, I just am) but at least I can laugh now. It's good when the tears can be controlled eh?!

Just a word to the wise - unless they tell you otherwise, always eat before a hospital appointment, it makes giving blood that little bit easier on the system.