Message from Rosemary

[Andrew MacLean]

Torn muscle can take a long time to heal; I reckon a visit to your GP and the liberal application of liniment, or even the sporting of a tubigrip might be in order.

Seriously, Rosemary, your GP ought at least to have an opportunity to see the damage. She would be in a position to advise you on whether a little bit of surgery would help.

All the best.

Andrew

[rosemary johnson]

I wasn't aware it WSS torn....
nest time I'm at GP
s will mention it.
or try to remember to.
It isn't a problem - doesn't hurt. Or not unless I press it.
Thought it weird - never had a hollow left where there was a bruise before.
WOndered if it was all part of steroid-related muscle weakness stuff....
SOrry for the lousy typing, by the way.
Get so far ahead of the screen on this slow connection system.
And the edelete to rub out typos does weird things.
no non-disabled person would pt up with this for a moment....!
Have not had copy of letter from hospital endocrinologist yet (asked for copy of letter going to GP), nor retest results.
Seriously, any suggestions for what to do now would be very very welcome.
Rosemary

[Andrew MacLean]

I don't know that either but your earlier post reads as if you don't know that it isn't torn.

All the best, and keep ear of the hooves of moody horses.

Andrew

[Hilary Johnson]

I once got a dent in my arm after I stumbled and fell, hitting my arm on a windowsill in Sidmouth. (2 pints of real cider might have been partly to blame!) It lasted about 2 years, gradually healing itself. It's completely better now, and never caused me any trouble.

Re getting mugged - I suggest you carry a rape alarm, and be ready to use it. Don't carry valuables (credit card etc) unless you need them.

Cyclists often suffer from a condition referred to as "the bonks" when their blood sugar gets so low they fall off their bike! Sounds a bit like your problem. Suggest you carry glucose tablets/boiled sweets etc and suck one when you feel about to collapse to boost blood sugar.

You are clearly very, very stressed out by all of this. You cannot go on like this.
If you really want advice ... you won't like it, but you are clearly desperate so it's time to reconsider the ideas you have rejected.

The tests have shown that you were almost certainly wrong about Cushings and Addison's - maybe you are also wrong about other things.

If you do get referred to the Chronic Fatigue specialist - GO!! Go, even if it seems inappropriate, if it's likely that anyone else with the same symptoms has been there before. You cannot be the only person in the world, or even in London, to be sufferring in the way you are, there must somewhere be a doctor who will recognise what you've got. Where do you think anyone else with whatever you've got ends up being referred to?? I wish you had gone to the neuro-psychiatrist - for the same reason - she may have previously seen other people with what you've got.

I suggest you accept the idea of getting some counselling or CBT to help you deal with the stress, and give it a chance, because if you go in with the fixed idea that it's all a waste of time, of course it will be, no-one can help you if you are completely hostile to everything they say. If it's done properly it won't be patronising and could be just what you need to turn your life around. It could also help you work out ways to deal better with with Mother.

I suspect that a lot of what you have wrong with you cannot be cured by orthodox medicine, it may be the only way you will recover is to heal yourself by using physical and mental exercises, meanwhile looking after yourself as well as you can to allow your body and brain to heal. If you believe in any alternative therapies I suggest you try them. If you can deal with the stress you will get a better chance to heal yourself.

Why are you willing to say you have brain damage, but refuse to believe you have anything psychologically wrong??? It's not logiocal. If done properly, CBT is mental physiotherapy. Isn't that what you need to recover from brain damage???? The brain, and the human body, has amazing powers of recovery, but it cannot do it if you are constantly stressed, exhausted, angry, thinking negative thoughts etc etc.

H

[Hilary Johnson]

p.s. I heard someone on Radio 4 the other day saying she once had ME - she said something vague about being very stressed out, and she basically woke up with it one morning. She said hypersensitivity, to lights, sounds, anything, was the main symptom. She said she found a wonderful neuro-psychologist (somewhere in London by the sound of it) who told her that it was as if the entire software in her brain had got corrupted and she basically needed to reprogramme her entire brain - which she did with the aid of the exercises this doctor gave her. That's about all she said and she then went on to talk about her art work.

Does any of that seem like what you may have? If so, maybe that's another reason to see this person you don't think could help.

Sorry I can't remember her name - I'm not even sure what programme it was on, because I had it on as background and wasn't really listening - Midweek, maybe, or Start The Week - but the Radio 4 Helpline 0800 044 044 might know.

And I know when you read all I've written you'll probably go through the ceiling, and start ranting at me, but you did say all advice would be welcome, and advice is what you've got.

H

[rosemary johnson]

WOud you believe - computer just froze and lost reply again!!!!
Aarghhhh!!!!!!
Will try again in little bits.
H - seem to be 2 misapprehensions:
1. nope, didn't refuse to see neuropsychologist - went to see here a few weeks ago, and thought I'd reported it here.
She did loadsa test, very few of which were anything related to what problems I reported.
Most of them were very cisual - singularly inappropriate for someone with is PS. had no lenses due to very sore eyes, and has made the effort to point this out to the hospital in advance.
visual, that shoudl be.
Didn't appear to hit the problems I've got in a very small sample that might have shown them up - but as she never gave feedback I can't tell whether they popped up or not
ie. as she didn't say what the answers I didn't get were, don't know if I should have known them and didn't cos memory was playing up, or whether I really wouldn't have connected the name to the face (as it were).
Eg. I know the name Krushchev very well but have no idea what he looked like.
Wsa great waste of time and she shows no inclination to think she or her dept can do anythign for me.

2. Tests haven't proved me any way wrong about Cushings! or addisons for that matter.
I've never said I thought I had either (except the "iatrogenic Cushings" ofter the op, which is the doctorspeke name apparently for an adverse reaction to=being given steroid medication.
I've been saying I thought I was now so sensitive to steroids - witness: get ADR from 3 drops of Lotemax (steroid) eye drops over 24 hours, or one puff of brown inhaler - that I get the adrs from natural increases in endogenous levels.
SO not surprised the tests show nothing out of normal range - only by.
Said this at hospital - they didn't rule out this posibility, only said their tests couldn't demonstrate a hypersensitivity reaction.
Which they wouldn't, only show the actual levels on a particular day.

To test hypersensitivty, would have to do repeated regular tests and compare with symptom diary.
I presume........


More in part 2
Rosemary

[rosemary johnson]

and computer froze again and lost part 2....

Thans for info on dent in arm.
Have had lumps before where bruises were - just not hollows.
WIll assume for now will behave as lumps.
Just thought it a bit weird.


Have heard of "the bonk" from my cycle campaigning days.
Don't think this is blood sugar related as
- not linked to hunger
- has happened shortly after eating anyway
- been tested and found OK when I did get taken to A&E

Supect may me more likley linked to coldness - all bar one, one of the 7 have been in the cold.
Possibly that already-weakened muscles can't keep going through all the vaso-construction that kicks in agains tthe cold.
Get tea seems to help a bit - probably stimulant effect.
If chocolate helpful probably for stimulat effect too.
Getting in warm/dry/shelter helps.
Muscels never did get back to pre-op strength after the anaesthetic. Or the steroids in the anaesthetic.
Felt very very weak and no strength for ages after the op.
Was trying to get fitter again last summer.
Getting slowly better, fitter, stronger, then got broken rib then "flu" in quick succession.
This set back getting=fit programme about 8 months. and been going backwards.
Keep trying to do bits more andbits more and get fit again steadily.
Unhill struggle when all working is hard woras muscles so weak already.
Note: I lack muscular strength for physical tasks ven when not on point of collapse - all jobs still take longer than two years ago at best of times.
But if go round wrapped up like polar bear will sweat like a fountain and drop with dehydration.....
more part 3

[rosemary johnson]

part 3 and keeping fingers crossed.
I challenge anyone coping with a system like this not tobe stressed out!!!!
Actually, best way to deal with this stress is probably to get back in touch with the lynx system manager, offer to go round to wherever it is with laptop and beercans and help investigate why normal demon s/w won't connect properly any more....

I heard - or rather, half-heard - the programme on R4 too. THink it was one of the 9am slot ones, now you mentoin it.
Came in in middle, IRR, pricked p ears vague at ME, was vaguely disappointed she didn't say more, but thought had minimal resemblance to where I was coming from.
Hypersensitivity - to light,has been building up over 20 years or more.
In 1986 could stand flash photography.
By 1992, couldn't.
ROughly over tme was getting back into "system" of MEH contact lens cente and needing to be fitted with new lenses cos vision deteroirating.
Been on steroid asthma inhalers since 1995.
Hd dramatically good effect when first started on them. Been sayin for several years, though, that didn't think they were doing any good, and started wheezing after using them so had to puff blue inhalr straight after brown.
Not got anything other than blanks loos fro "the pros" about this.
Suspect ma be, in fact, muscle-tensing effect of the steroid - and blue inhaers are muscular relaxants.
Hence the red inhalers - a bit of anti-inflamatory steroid plus long-lasting muscle relaxant - more effective than either separately.
But haven't dared to use it again.
Hypersensitive reaction to music upstairs wore off with removal of undesirable neighbours and return of respectable tenants.
Been hypersensitive to insect bites as long as I can remember.
Wish wonan on R4 had sid more in a way, but can see why her art is what she wants to talk about.
Used to wrok with someone with ME and have lunch with him in canteen quite often.
He talked about possible links to mineral deficiencies and ate his deserts before his main courses (one per day, I mean, but every day). SOmething to do with better absorption of most useful nutrients.
more part 4

[rosemary johnson]

Will pass on the pints of Real Cider...!
Agree, there has to be a medic (or someone!) somewhere who knows exactly what this is, and will nod with increasing recognition - and hopefully know what to do about it.
Or at least what to call it and can put it down in black and white.
But I am rapidly running out of inspiration as to what such a person may be called.
A somethingologist, I mean, not Ms Bloggs.
Otherwise would have asked for referral to such 19 months ago!

As regards CFS person - have still not got copy of letter from endocrinologist to new GP.
AIUI, it is up to me ts to whether I want to ask GP to take up this suggestion.
Though of course GP may have a better piece of advice.

Fully intend to say, well, if this guy suggets it, let's write to the bloke he suggests - but lay out the problem properly, and ask for confirmation this is a problem he can take on (or other suggestions if he thinks not).
WIll offer to draft letter......
seems best way to go about things.

As for CAM - as a complementary therapist myself (!) I clearly belong ibelieve in some sorts . Witness also my chiropractor' s bill.
It may end up with being the best approaoch is a physio and/or sports masseuse to try to getsteroid-wasted muscles back working again.
Competant (and isured) therapists have their rules on contra=indications and who they won't treat. By my professional code of conduct - and insurance company - I ought to refuse to treat me until get some diagnosis of hat the problem is and so can be sure it's not something I can make worse.
If you see waht mean.
Actually, suppose endo. tests revealing normal levels ought to rule out possibility ofpituitary confused by odd signals from cancer tumour somewhere..... though he did say ACTH was quite high.......

Have absolutely NO intention of paying out for any "counsellors" or other sort of shrink - not until someone can gve me any conception of them
- tther, that is, than unfortunate experience of them, and being fobbed off onto them by people with their own problems and/or trying to cover their backs -
which is of being totally useless and patronising gits
Can think of nothing more likely to push up endogenous steroid levels to danger levels, set off all the hallucinations again and get their teeth kciked in!
Have on occasions asked people trying to shove me in their direction - and/or to fob me off onto them - to give me some conception of theim and their services that would be oanything other than counterproductive.
No-one hNo-one has ever managed anything of the sort - indeed, there's only one who's ever tried.
First neurologist I saw - the one who suggested CBT - agreed specialist RDA riding instructor may be more use be far more useful in dealing iwth someone trying to ride a horse whse brain has difficulty processing unexpected motion sensations than a VBT person in an office chair.
CBT, BTW, was one of the things I had someone trying to fob me off onto after that neck injury accident at work a few years ago.
Turned out to be a neck injury with trapped blood vessel(s) and rubing nerve(s).
Somehow managed to untrap it by chance and all was well again - excpe the motion processing and memory recall nevr recovered.

As reagrds stress - I always reckon the best way to deal with stress is to deal with what is cauing it.
SO if someone is stressed out by a totally incompetant boss at work, what they really need is not a stress counsellor but a good union rep and possibly an employment tribunal.

As for Mother....... I get the impression I normally cope with her better than someone else I know.....?!?!?!

Rosemary

[Barbara Davis]

Rosemary is still having trouble with her internet connection, so she asked me to pass on the following messages as an explanation for wanting some early nights:


COUld really do with hot tea and loadsa choccie!

Little Shit is least of what I've been calling miniature Shetland No. 1 today.

Jack, the 28 inch palomino.

got him in, groomed him, harnessed him up to the little cart, set off for a drive.

Went up the lane under the railway bridge, which is now re-opened as they've finished the bridge repair work. Aim to go past the hockey club, then past the Spurs training ground to the end of that lane and back, and/or down past the cottages to where the footbridge goes over the river, turn round in the space there and head back after a little spin out.

Did the first part, after a little hitch when I couldn't open the padlock to open the gate just past the cottage just the far side of the bridge. We ended up going round the "horse and rider" gap at the side, with me hopping off the cart to manoucre the cart, as it only just fitted.

Thought the near side wheel looked a bit wobbly. Stopped by SPurs car park hopped out again and had a look. Seemed a bit more wobbly than the other one but semed to be on firmly enough. Made note to mention it to Danny when we get back.

Got to the gate across the lane where it turns into a path through the woods on way to footbridge. Last tiem I went that way it was fastened with just a loop of string. Now has a hefty new chain an dpadlock. HOp out of cart again to investigate this and am about to start turning round when Jack decides to go through the horse-and-rider gap at the side of the gate.

WHoa, you little horror! You may fit through there, but the cart won't.

Ooh, actually, it just might, if he goes a foot at a time and I lift the cart roun to negotiate the gap carefully.

He goes too fast and prngs cart wheel on gate post and I have to free it, but we just get through.

And as soon as the cart is free of the gatepost, the Little Shit No 1 sets off againa t a rapid trot.

Without me.

WIth me still lifting the cart past the gate post.

Running along madly, gasping asthmatically and wheezing and yelling Whoa! and Waaaaaalkiiiiiing!!!! fit to burst, and trying to keep hold of the back of the cart but can't keep going fast enough.

Little SHit No. 1 trotting faster and faster and not whoaing at all. Can't get up to reach the reins to pull on them.

He gets tot he bit of clearing in front of the footbridge. Appears not to have tried to go across it but to have turned left and gone down the towpath along th river.

This is a nice footpath,a nd you can ride a horse down it.

SO Jack will fit along fine.

But the cart on the back??????

I am having horrible VISIONS!!!! of the cart coming off the (narrow and sometimes steep) path and downthe bank intothe river, and pulling jack after it and him drowning int he river.

scurry down towpath, wheezing horribly.

No pony in sight.

No cart.

No patch of flattened vegetation where disaster has gone down bank into Ze Drink.

Half a dozen lads, apparently on way home from school, came to rescue and are running along towpath trying to catch up with Jack and cart. They are not only much younger but much fitter than me and are vanishing into the distance ..... catch up a couple walking thir dog, who say that yes, a mad pony has gone that way with a cart on the back and they tried to stop him but he wouldn't.

At least we're going the right way....!

Scurry along as fast as I can.

Ring Danny to say what's going on and "YOu're never going to let me take your ponies out again!!!!"

He thinks this is all very funny. Glad someone does.

Scurry on. Hear voices,

See Hack heading towards me, still pulling cart, now being driven by one of lads (in cart) and his mates following on behind. He stops and gets out, and I say enormous thank yous.

Take his place, think, not good driving place, but he's come this way. SO get ina nd drive him back.

Very bumpy!!!!

OK till get to a place where path goes steep uphill ofr short way.

Jack attacks this hill, bit is slowing markedly. Becomes apparently cart is too wide for the narrowing track and about to slide off path down hil.....

Next thing I know, I'm falling out of the cart and rolling down the river back, and rapidly come to halt lying on my bac with legs up in the air - in a bed of stinging nettles.


Elbows now throbbing from all the stings.

hen I managed to get up and look up, see Jack standing still (thankfully!!!!!!) with his head next tot he fence - and the cart on one wheel and the other come off and lying in the middle of the paath.


That's the one that was wobbly before.

Try to put wheel back on end of axle and hunt for missing bolts, nuts, etc.

Find only a rather battered thing looks like a shake proof washer.......

By now thoroughly shaken up, metaphorically and well as literally (and very well stung!)

I lead jack back, and the lads start to wheel the cart on its one good whell.

In fact, they seem to have got it back on again, as when we get back to the stables and unharness, it feels ons as firmly as it did earlier..... ????

I say thanks enormously again, they decline tea/coffee and say they'd better get back.

Bonnie and I uharness, and I spong Jack down.

For all his running about, he's not that sweaty......


SIt down with big cup of tea dn biscuits and quiver.

"Little Shit" indeed, today.

Now, if anyone had said that Leo might have set off without me and got half way to charlie Brown's roundabout down the towpath, towing enpty cart, before anyone could catch him, I'd have believed them!!!!! But not Jack. NOrmally, Leo is the looney one and Jack the one who's very happy to stop for a snack at the nearest patch of grass. Not today.....


Could definitely do with tea and loadsa choccie.

Actually, make that a stiff whisky and loadsa choccie!!!!!!

Now, where did i put that tube of "freeze-gel" stuff for the elbows?!


Rosemary

PS: for anyone who knows north-east London, the towpath is down the River Roding, and the footbridge is near Roding Valley tube station. Or the end of Luxborough Lane, IG7, if anyone wants to try to find in on gogglemaps, or whatever.


followed by


Actually, make that a large brandy and a tarte tatin!


Did, I'm glad to say, recover enough to 1. go down field to see Ollie, pick out his feet without getting elbows bitten to shreds (!) and sit on grass with him lying fast asleep in my lap for a while.

(Ollie is Little SHit No. 5 and is three months old today. Happy one-quarter=th birthday Ollie! No.3 is Lexi, his mother, and No 4 is called Cosmic.)

and 2. get Duke in from field, clean his feet (looking rather dodgy again), brush his, saddle up, and ride him up the road tothe sports centre and back, and 3. lunge Leo.

Ought to sleep well tonight .... I live in hope.


Rosemary