Wednesday, 18 February 2009

A broken kettle, and maybe a broken heart (not that kind)

My kettle's broken and it made me think of a postcard we had in the flat when we were students. It was by Annie Lawson and I'm sure the words were: Kettle's fucked, and a colourful, angry kettle drawing. I loved it, but can't find it in the cartoon bank. I did find this one, I had it too. I was a big sender of letters in my time, so it makes me smile.

There is something niggling, and I know it is waiting for the NICE outcome. It could be a week. I try not to get enraged in anticipation of a ruling in NICE's favour. I lead such a slow-paced life and am still shattered most of the time. Would I really fucking choose this if CBT and graded exercise were the answer? If NICE wins, my heart will break, my trust in any kind of just process.

I'm linking to Aztec Camera, thay have come into my head, 'We Could Send Letters'. I think it's Roddy singing on his own, it sounds different. Still it is heartbreaking, in a retro way. Reminds me of my first real love.


Anonymous said...

I'm having a particularly knackered time too. Fighting DLA people - as if I would go through all this for £17 a week... Let's keep hoping for some sense. Anger is so debilitating.

nmj said...

The wait is unsettling, it should have been clear cut, what is there to ponder over? People who get better with GET and CBT don't have ME. Simple.

nmj said...

There is another account at of someone who was in court for the hearing, it is kind of dispiriting to read. Scroll down to read the new eyewitness account.

trousers said...

I clicked on the link out of curiosity - I never liked what I knew of Aztec Camera (ie the later, slicker-sounding stuff) but this one definitely has a ropey kind of charm to it, unfettered by any polish.

I was also piqued to note that the same C81 tape that this is from has a Cabaret Voltaire track on it, one which I'm not familiar with: I have a certain obsessive interest in their stuff.

Anyway, I'll not ramble about that here. Have you treated yourself to a new kettle yet?

Reading the Signs said...

We seem to be lagging behind other countries in terms of how this illness is treated and understood. There is a real resistance to properly taking it on board, and the reasons behind this seem murky and shabby.

I have to say that I have known a couple of people who have had M.E. (many years) for whom a particular kind of (self-devised) graded exercise programme was sometimes beneficial, though it was not by any means a cure. For myself, there are periods when I am able to take regular walks, gradually increasing what I do, and when I am able to do this it is very good. But from one day to the next this can change with the wind, and what benefits me one month/week/day can made me very ill on another, and it is impossible to predict. For people with severe M.E. it is (and has been) obviously disastrous, and we need those changes in the Guidelines.

nmj said...

Hey Trews, High Land Hard Rain is best Aztec Camera album, the first one. I am making do with the kettle, I can tweak the switch & it sometimes works.

Hey Signs, I guess we all manage our illnesses intuitively and intelligently, based on however many years we've been ill and the ups & downs we have gone through. What you call graded exercise I would call pacing. We naturally do more in better phases, we stay still in worse phases. We have no choice on whether to stay still or not. Graded Excercise Therapy refers to aerobic exercise and is based on the theory that our muscles are deconditioned due to a lack of activity. This is diabolically wrong and should be challenged regardless of the severity of one's illness. I speak as severe turned moderate. I have always become more ill - sometimes catastrophically so - after so called graded exercise (my own version). People who recover *fully* from CBT and GET don't have ME, they have something else that has been conveniently labelled as ME by the psychosocials.

Kate108 said...

Ive been peeking into your blog for a while now after reading your book, which was so sensitively written. It was a pure joy to read in the sense that so much of it reasonated with my own experience.

Your words of what a slow paced life you lead and the feeling of still being shattered all the time stuck a real chord with me when i read them. The sheer frustration of this illness at times is overwhelming. I'm hitting my tenth year anniversary in March not much to celebrate there then!

I can't tell you how much i appreciated the book you wrote it made me feel so grateful that at least i didn't contract M.E. until i was 37. I really hadn't thought of it that way before.

Funnily enough i am recovering from having to have a mastectomy at the moment ( bad relapse in progress )and luckily for me i only needed an operation no other treatment. The whole cancer experience was quickly put into perspective for me through having endured years of pain thanks to the M.E. I realised that losing a breast would have a limited impact on my day to day functioning than if i'd had to lose an arm or leg. I very much doubt i would have had this insight if i hadn't experienced the physical limitations placed on my ability to walk etc etc ... by M.E.

I don't think we realise how self-sufficient and resilient M.E. makes us until we're faced with a differnt mountain to climb.
Having breast cancer has brought it home to me, that on one level with any illness in our society you really are treated like a product. The diagnosis is made and from that the treatment protocol follows.

However I found the surgeon and anthetist to be extremely well informed about M.E. They listened carefully to what i said and tailored their treatment as much as they could to minimise the impact on my health.

So on one hand we have the system or process and on the other we have some caring proffessionals
who do actively listen and believe the individual they are treating. I know all the medical profession do not act like this i've met some of them but i just try to not let them bother me too much. I just avoid them.

So i suppose what i'm trying to say is that although the Nice outcome is very important, it's not going to provide all the answers for us.

nmj said...

hey kate ... wondering if you are the same kate from a couple of posts ago, the michael gove comment that made me smile? am so sorry to hear about your mastectomy, that has to be very tough for you, regardless, but i think you are right that having M.E - and dealing with all the disbelief and hokum that generally goes along with it - does make you psychologically resilient, you have no choice really, or you would sink, though i guess, like any long term physical illness, some cope better than others.

of course there are good, supportive medics out there, but i have to say i have personally not come across many. but when you find them they are like gold dust.

in the absence of any surefire treatment, we have to all make our own way, make our own judgements of what helps us best, and, yes, more just, rational NICE guidelines will not be a magic wand that makes everything fine, but they will go a long way to making PWME feel more supported and respected... advocating ludicrous treatments that are potentially very harmful will just make people more ill, more dependent in every way, and no one will benefit individually or societally.