h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

If & it's a very big "if" a way could be found to actualy repair the myelin that has already disappeared, maybe, just maybe, we could start thinking in terms of, if not so much a cure, but a means of preventing further degeneration & maybe the faint possibility of things getting better, rather than as at present, where the best we seem able to get is "Well it's not got as worse as quickly as it might have done, aren't you lucky?"

*Cue sickly smile from grateful patient*

http://news.bbc.co.uk/1/hi/health/7035883.stm

How are we all doing? Can we maybe have some honest type updates? I'll start the ball rolling if you like.

Mobility:increasingly limited, but i adapt mostly. Am still pressurising for care worker to come for even an hour a week to help with heavy housework & stop me being dependent on the few friends who are kind enough to take me shopping for heavy stuff.The dependent dread that they can't really winds me up.

Am dreading Winter, damp & cold just wipe me out.

My meds have been changed following a hospital crisis, i feel much better on these; seems i have been taking heart meds unnecessarily for 25 years, when controlling my asthma was much more vital. Am now on low dose anti-anxiety meds, which also help the electric shock/twitch/spasm/cramp/agony syndrome. Been told to drink minimum of 2 litres water daily, which is fine if you have transport, but carting that lot uphill each week would finish me off i think!

Either i neeed my glasses prescription altered again or the optic nerve is playing silly buggers, as i was warned would happen. Not good news for an artist really.

I'm trippin over more often, yet have radically cut down on booze; my bruises are a joy to behold!

Hospital tests seem to say all my internal systems are working "you must be built like a horse" apart from obviously the DeMyelin stuff, which is becoming more focused on the left side.

The latest is really embarassing, despite apparently having "fantastically effective kidneys....considering"; i have to confess i am having probs with...gaarh, no nice way to put it, "urinary incontinence" if i laugh, cough etc. So basically that's bye-bye to any idea of a sex life, ah well, i'm 52, i should be past such things anyway; i have my memories!

My legs are so skinny, if it wasn't for the bruises & spider veins, if they are covered with opaque black tights i bet most teenagers would wonder what the secret is?

I am trying to pace myself: on an "energy" day, i rush around doing everything possible, knowing full well i will pay for it with total exhaustion for the next 3 days or more. People honestly never have, never can & maybe never will recognise that if you are bounding round one day & unable to move for a week, you are still the same person, you aren't putting it on for sympathy, it's just your resources are more finite than most & it's human nature to do as much as possible while you can. When it catches up with you, you can do nothing & that's that. You need total rest, no questions, but anything that helps you stay resting (such as being brought a bowl of soup, rather than making it ...out of the question, just go without...would really help.

A positive attitude is vital, yes, it's progressive, no, it isn't usually fatal or even immensely painful beyond endurance nor infectious It's a hassle, it's a pain & requires constant self-evaluation, but there are far worse things to have: we got off pretty lightly really (on a "good" day!)

So: How are the rest of you doing?

zdt

Attitude, lessening stress and pacing oneself do seem to be the best self-help tools.

Nice to see this post Terri.
Hope you are OK, wherever you are.