Message from Rosemary

[Hilary Johnson]

Having thought over the weekend, here's some more suggestions:

MUSIC
I've often heard that listening to music os good for helping damaged brains repair so suggest you listen to music as much as possible.

CAMERA FLASHES
I've been to quite a lot of parties in the last few years and seen lots of photos taken but, now I come to think of it, I can't remember when I last saw a camera actually flash. Modern digital cameras don't. Professionals probably still use it to get interesting lighting effects but you'll be safe from ordinary snaps by with-it people.

ME/CHRONIC FATIGUE
I googled these. The terms seem to be used interchangeably. Among the symptoms listed I found pretty much everything that you are complaining of, though the reference to hallucinations was a bit vague, and only one website mentioned surgery as a possible trigger. But most included memory and balance problems, as well as muscle wasting, fainting, sleep problems, exhaustion etc etc. Suggest you have a go at googling the same. If your symptoms are so similar, a specialist in chronic fatigue is very likely to know what it is you've got - you may even have ME...

You obviously don't agree with me on a lot of subjects, well, there's not much I can do about that.
H

[rosemary johnson]

Third time lucky ... maybe. COnnection just jung and had to reboot twice over.
Flashes - you clearly have a better clibre of party -goer )or anything-goer) round your way than we do here.
flashes are the bane of my life.
Everywehe, just about.
Seems modern cameras (and mobiles) decide for themselves weter the daylight is bright enough, and turn flash on when they think it isn't.
Most people don't have a clue how to do anything about this.
Mind, most people, in my experience, have no clue they couldbe jurting anyone else, and give sweet FA of a toss about that anyway.
Alas.
Will try googling anything when get reliable (and readable) connection again.
I'm sure symptoms of ME/CFS .whatever new US term for the thing is also very similar to those who've been in hospital strung from ceiling with multiple breaks/in ICU with ... etc etc... and muscles wasted by lasck of use.
And all a separate issue from fact that, in my case, they reliable and repeatably return with any trace of steroid.
I know very well, in other words, what started the problem, and what brings it back.
Question is what to do about it.
Maybe physio, at end of day.
Though will be fighting to stand still unless can dampt down hypersensitivity.
Had letter from Barts today - copy of letter from young registrar
..... to the WRONG GP!!!!!!!

Arrghh, idiots!!!!!!!!!
Rang them up about this, and guess what! No-one rang me bback.
Also had lab results - iron well up within normal range,a nd Vitamin D towards lower end of normal range.
NO indication what they were on previous tests.
Will try to find better phone number and ring again tomorrow.
In between ban and dealing with farrier.
Definitely want to find out from someone why, when the smptoms are so clearly related to the initial steroid effects from teh op, the CFS person they are suggesting is called a psychiatrist - so far, I think this is a lack of information flow andand unless this is sorted out, am nothing but highly offended!!!!!!!!
As if didn't hae enough to deal with!
Rosemary

[Hilary Johnson]

I once considered training as a counsellor, given how many people kept trying to tell me all their troubles, and I found some textbooks in the public library and read them to get an idea of what might be involved. I decided not to in the end, and what follows is a very brief, non-professional summary.

There are lots of different schools of counselling and they are all based on different theories, and they'd all do different things in a session.

A) theory - people know the solution to their problems if only they think about it for long enough so give them lots of time to talk. Probably true of many people e.g. busy wife/mother/carer for elderly relatives who never stops to look after themself.

b) theory - having a relationship with a counsellor who treats them with respect and decency is therapeutic in itself - certainly would be true for someone who has been abused as a child, put down by teachers, employers etc. all their life.

C) theory - people get stuck because they don't have the skills they need to solve their problems so the role of the counsellor is to work out what's missing and then teach them - e.g. a lonely person who just never learnt how to start up a conversation - or to provide moral support while they learn elsewhere e.g. an IT course.

D) CBT - theory - people's brains get stuck in a rut of automatically thinking negative thoughts and they can't get out of it to think more constructively, so teach them to be explicit about what their thoughts and assumptions are, and analyse and challenge them, with the aim of unsticking them and getting them to be more realistic. This is NOT about "positive thinking", but about realistic thinking. Usually applied to people with depressed negative thoughts but maybe it would work just as well for getting someone unstuck from delusions of grandeur.
The reason I suggest this might help you is (1) the "hallucinations" may be a brain-stuck-in-a-groove problem, and (2) a lot of what you post here shows signs of automatically going into thinking "Everyone is an idiot, they are conspiring against me, nothing will work, I'm stupid, my whole life is screwed up". Go back and reread your posts if you think I'm talking rubbish, and see how often you've said that sort of thing. Then other times you say "well of course I don't really think that, it's just that they're overworked" - I can't tell from here whether you're just sounding off and feel better as soon as you have done, or really mean it and are stuck in those thoughts for a long time. Maybe the brain damage you talk about has somehow made it difficult for you to get unstuck from that autopilot way of thinking and CBT exercises would be a kind of physio for the brain. That's why I suggest it. Maybe it's just your way of letting off steam, but when you talk about wishing you'd died or cutting your cornea out with a Swiss Army Knife, I get really worried about you.

OK, so you're not convinced, but you said no-one had said what good a counsellor might do, there's the answer as I understand it.

Alternatively, maybe all you need is a robust friend who will listen to you sounding off and just say (preferably in a thick accent, County Cork works well) :

"Ach, Bollox!!"

H

[Andrew MacLean]

I am wondering whether this string is becoming a little unwieldy?

It began with Barbara letting us know how Rosemary was faring and her explanation that Rosemary was cut off from the www. Since then, and with Rosemary happily restored to the comradeship of the www in general and the forum in particular, the string has taken several lurches in various directions.

I find myself wondering whether a fresh strings might not be appropriate for future posts? If anyone has strong feelings about keeping this string alive, I'll leave it alone. Otherwise, I think I'll lock the string so that it can move down the board in the usual way.

All the best

Andrew

[Barbara Davis]

I appreciate your point, Andrew, but would it be possible to wait until this conversation comes to a natural break? At the moment I feel we are in the middle of something important. Thanks.

I do hope this doesn't seem as if we are ganging up on you, Rosemary, but I do think Hilary has a point. I see you as someone talking of self-harming (even though I do not seriously see you doing it) and full of anger, depression and, at times, self-pity - even irrational (not everyone in the NHS is useless and offensive: many are simply overworked people doing their best). Don't get me wrong: I think your feelings are understandable in the circumstances. But Hilary is right in pointing out that what you think and feel can and does influence your physical symptoms.

You've probably heard of the now quite famous research looking at those who had suffered serious traumas such as amputations. Those who understood such things to "come with the territory", such as soldiers, seemed to suffer markedly less pain than those for whom the trauma was a complete surprise, measured by such things as the amount of pain relief they need. And the evidence is overwhelming that the placebo effect is genuine: taking an inert pill can reduce symptoms significantly. In other words, handling your feelings and thoughts about what has happened to you may possibly help ease some of the problems.

And, if nothing else, that is where a psychologist could help - if you would let her. The last five words being the crunch: it's partly your choice whether you are helped or not. But the suggestion isn't intended to offend you.

Take care: I hope you find something to help you soon.

[Andrew MacLean]

Rosemary has been in touch; she is having problems with her ISP, and is unable to visit the forum just now. She has asked me to go ahead and lock the topic.

She did ask me to clarify some misunderstandings that may have arisen from some posts above: while she is having a torrid time post graft, she does not have some of the difficulties that have been ascribed to her.

I know we all wish her well.

If anyone wants to pick up any of the themes in this locked string, I suggest that new strings may make a better vehicle for them to be discussed.

Andrew