What I'm really thinking?

having a chronic, incurable, degenerative, illness is somewhat isolating. MS is relentless. It's a bit like Arnie or Annie who stop at nothing before getting their man.
It requires a different way of thinking... It requires more thinking full stop and that's before you've even had breakfast.
I was months away from my 21st birthday when i got this diagnosis. I allowed it to define my life even though, with the benefit of hindsight, it's only really been 6 years or so that it actually has.

Exception Management is a new term (to me anyway) for what appears to be people doing their jobs, taking each case on its own merits and working through solutions individually.

http://www.amazon.co.uk./Pain-Fifth-Vital-Marni-Jackson/dp/0747565589 this is a great book so far. It was lent to me by the massage therapist I've been seeing for the past few weeks. The author has just spent time in a pain clinic where experts from a range of disciplines are asked to look at the next tough case the clinic gets (they are often the last resort) to which a gp will send their 'hard to treat' chronic pain patients... psychiatrists, psychologists, anaesthetists, therapists of many backgrounds spend time looking into a patients history, current circumstances and does some exception management.

It seems empathy is what's missing in modern healthcare. Apparently since Florence Nightingale nursing staff are one of the only professions to have it in spades. Marni Jackson's desriptios of pain clinics describe what is missing in people's long term care. sometimes it feels like the doctors can't fix you and so lose interest. perhaps that's very wrong of me and i should just buck up my ideas or go for a nice bracing walk in the autumn sun... oh that's right, I can't.

before you think I'm on some sort of pity trip I'm really not. I want to set up an expert patient course especially for MS patients, I think talking to the head of th MS TCs might be a starting point. their details are attached to a group which includees the James Lind Alliance that is trying to find out from patients what direction they'd like to see future research go in. this is to try and counteract dealing with A N Other drug trial being proposed by profit making entities https://www.surveymonkey.com/s/mspsponline.
 

One of my 'colleague's in disease has eloquently pointed out the struggles that a chronic condition can bring http://www.wheelchairkamikaze.com/2012/11/why-must-being-sick-be-such-hard-work.html so calmly and succinctly cataloguing what can, at times, reduce our experience of life to some sort of soul-sapping misery.

  I hear hospices are pretty compassionate places which makes me wonder why that is. Is it because the staff (and patients) at a hospice know what's to come?
why is it that often I feel that there is a huge gulf of understanding between me and (take your pick) from assorted caregivers.

this post also needs polishing but i figure exposure will help clean up my own shoddy practices!

As someone with a chronic condition i listened to the pronouncements of Lord Justice Leveson http://www.bbc.co.uk/news/uk-20543936 on the behaviour of an unruly industry with great interest. As Mayor Johnson http://www.citymayors.com/mayors/london-mayor-johnson.html I think said at some point along in the proceedings (albeit with a better grasp of history and the English language than me) daylight is the best cleanser of squalid practices.

I'd like to have a Leveson style inquiry into the practices of pharmaceutical companies that have also been found guilty of sharp practices. I have a feeling one may not be so forthcoming as there isn't a picture of a teenaged girl attached whilst there are shareholder profits and people's and institutions pensions at risk. that's no reason to not talk about the proposition with as many folk as will listen.
this post isn't finished but I want to strike while the iron is hot.

 I think I know lots of people who share my well founded mistrust of the pharmacos.

We may not count Hugh 'floppy hair' Grant http://www.guardian.co.uk/media/2012/nov/29/taking-on-the-tabloids-hugh-grant or other celebrities trying to enhance their profile amongst us but people with long term health conditions who have to put up with the pharmacos' apparent lack of honesty in reporting trial data, fair pricing, exaggerated efficacy of overpriced products... etc.

We are legion and growing, ignore us at your cost MPs and decision makers.

Our illnesses are debilitating but not deadly - we're not going anywhere in a hurry.

imag(in)ing

It's a precious thing my brain.
It's easy to get all paradoxy looking at it wondering what folds are responsible for thinking this thought... this one right now. Is it a really honest self portrait or merely providing a gossamer-light smokescreen?
After all, with the birth of new imaging technologies like MRI in the 70s and 80s an image of the brain has become iconic like images did of the earth from space in 1969 'cept I wonder if we get more of a warm fuzzy glow from the earth imaged?
There isn't the same emotional resonance seeing, literally, what makes us tick. You could say an image of us collectively in our living environment (the little blue marble) is greater than a single aspect of one individual.
Ultimately what do you get from an image showing what's making us tick?
With the flick book i wanted to try and bring some 19th century 'end of the pier' technology to a late 20th century technology (that uses magnets! an almost elemental/timeless technology).

Do you get more from an orchestrated grimace/cheesy grin?
A portrait subject chooses to present a front to the viewer. 'This is who I am' not just when the camera clicks but for all time. the subject is SO not about artifice!

So many other smart things seem to be going on in the human body that our brains almost pale into insignificance.

An e-coli infection that keeps coming back as persistent UTIs apparently hides under a biofilm a creation of its own making of dead and used cells (letting it hide like a limpet stuck to the side of the bladder wall). I believe this is the same thing that Lyme type infections http://www.lymeinfo.net/multiplesclerosis.html do in the vascular system that some folk believe a long term antibiotic approach is useful for tackling. Chlamydiae Pneumoniae is apparently an alternative foreign body lurking under its own invisibility cloak explored further here http://www.davidwheldon.co.uk/ms-treatment.html The counter argument to the Lyme theory is http://theness.com/neurologicablog/index.php/ms-and-lyme-disease/ I think it's worth keeping in mind other's ways of thinking. Conspiracy and counter conspiracy abound when there are so many people tired of playing their roles in medical Cleudo at the same time as there being so many unknowns http://en.wikipedia.org/wiki/Cluedo

all this talk of alien invaders settling down into our bodies pretty comfortably and efficiently (which both harm and help us) can cause us to question who 'we' are. http://www.ted.com/talks/bonnie_bassler_on_how_bacteria_communicate.html

Another desperate grasping at straw: I'm looking into getting my fatty acid profile tested. Our brains are 60% fat after all. Patricia M Kane phd has done lots of research on the role a faulty lipid metabolism plays in neurodegenerative disease amongst a host of other disorders. http://www.healthy.co.nz/news/550-discover-the-benefits-of-essential-fatty-acids.html it's a long almost inscrutably technical assessment of her work but the final four paragraphs make for heartening reading. I'll be posting the progress of the exercise