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!