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.