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

Not being a doctor, I'm reluctant to recommend anything. A web search for CFS might help. Chronic Fatigue Syndrome seems to be an alternative term for ME (What does that stand for, BTW?) and will come up with more sites that are relevant to your requirements. Always bear in mind, though, that there is no control over what goes on a website and treat recommendations with an appropriate amount of caution.

12 years is a long time! I am glad you stopped by.
Under; "Have you seen this page/" there is an article written on ME by one of our members.

Bubble (UK) just joined hootoo recently she is taking some time off due to ME nagging her.

If you are into the herbal way, Leo is excellant.
You might stop by and see her
She has posted above on this thread.
Lighthouse girl and Kea are very helpful too!

There is a professional on the friends page I believe that answers questions occaissionally. They seemed quite friendly and willing to help with general suggestions.

Good Luck and I will talk to you again soon, (in US)I'll stop by your page later today. I come and go in short spurts but almost daily.

ME = myalgic encephalitis(?sp)

i didn't bother reading the backlog, but my sympathy goes out to whoever is having such a bad day...

People obviously assessing you is quite awful!
Comparing you to the last time they saw you pronouncing you better or worse from what they *see*.

I went through a year of people saying "OH MG you look so much older! You must have been through hell." Yeah. thanks for helping with the esteem!

This is an extension of the *ASK thread* post I made on the topic of physical abilties and the public. I did not want to over-kill the topic there

Kea had so importantly mentioned that people have invisible and flucuating illness and problems. YAY Kea!

I can definitely relate to the idea of 'invisible illness'. About 18 months ago I woke to find that my sense of touch was impaired down the right-hand side of my body - literally from head to foot. I could put my right foot into my left slipper and not know until I tried to put my left foot into a slipper. With my eyes shut I couldn't tell the difference between the cloth a sweatshirt is made of and my fleece jacket. Because my sense of touch was so badly affected, I couldn't type very well and moving about was difficult - I wasn't sure what my right leg and foot were doing. I ended up buying a hiking-pole to give me something to lean on.

It took an MRI scan to find that the myelin sheath had deteriorated around the nerve endings in certain parts of my brain. (I was attracted to this page by the word Myelin in the title!) The damage either repaired itself or the brain rerouted the signals and the problem cleared up. I have had 3 more attacks in the past 18months, although none were as bad or lasted as long as the first one.

My point is that this was another 'invisible illness'. Until I got the hiking pole, nobody could tell that anything was wrong just by looking at me. With the pole I got some sympathy and consideration - people would allow me to take my time going down stairs, for example.

So thanks to Kea for recognising that conditions can be invisible and can fluctuate. Both statements apply to what I occasionally suffer.

Hi Cheerful Dragon. Thanks for posting
Come back anytime, for any reason!
Those two points about invisible and flucuations affect the most, I think.

Hi there Cheerful dragon! (great name!!)

I SO SO agree with you about the invisible bit!!! I have a very similar sort of thing to you; mainly affecting my feet & legs. It is UTTERLY impossible to explain to anyone how you can say that your feet are so numb that you can't feel the ground & consequently trip over for no apparent reason (& then they wonder why you don't like going out in public???!!!); YET my feet can also be so exquisitely sensitive that walking on a carpet with a tiny piece of grit on can make me scream in agony!!

It is incredibly frustrating when you just cannot believe what your nerve endings are telling you, especially when they seem to change their mind for no apparent reason!

I have found that most people, even ones I thought of as very close, seem to have a sneaking suspicion that you are making it up; or at least exaggerating to get sympathy/attention etc!

I am lucky in that my doctor is incredibly sympathetic & realises the true story. He has just certified me as handicapped, someting I have resisted until forced to do so by financial necessity; but if it has the advantage of giving me a bloody card to wave at the outside world & say "look, I'm not 100%, give me a break for god's sake!"; I'm prepared to use it! I'm fed up with pretending I'm "normal", I'm unique, so are my problems; the rest of the world will just have to get used to it & be grateful that a) they haven't got something like this and b) that I'm not making even more fuss about it than I am!

So, welcome aboard! Thanks for putting up with my speech folks; but someone's got to say these things & at the moment it's me!!

tee-hee! just let them under-estimate us!!!

Terri

MY sister finally got *pronounced disabled* her first relief was in the form of validation. She needs medical attention and a Dr. badly. She has been to the dentist already. YAY! Dr. next. Of course she can now live and have care which is the biggest deal. It just shows how stressful it is to be questioned continuously whether audible or not

In a short time she will probably go through the typical depression of OMG I AM dis*! Things are not going back to previous way of life.

It is a process and it is never done if the problems are chronic or progressing. There are alwasy reasons to adjust.

Thank goodness we do!

Thanks for all the help and advice, I will go to the library's internet.

kat

It may sound strange, but I'd be a bit happier if the doctor I saw at the hospital gave a name to my condition. AFAIK, it's not MS - only my brain is affected, not my spinal cord or central nervous system. On the other hand, I haven't been able to find any condition that *does* reflect my symptoms.

I take each day as it comes - the 'attacks' are fairly widely spaced (the last was back in February, and the previous one was August the year before). But it would be nice to know what I've got. I'll probably ask my doctor the next time I go to see him. I don't see the point in going to the doctor just to ask what I'm suffering.

I guess I should think myself lucky not to have something bad enough to classify me as disabled, although if the first attack had continued or worsened I might well have ended up disabled.

What a frieghtning episode!
So it is possible to never see it return again?

I thought it was good to have a name ,when I have gotten them. It was something concrete for a while. It is not as strange if you can read or talk to people that have some of the same symptoms or diagnosis.

All the symptoms lists for diseases seem to be inadequate for any one individualThey are often too depressing or dismissing.

Doing a websearch for myelin doesn't help. You either get pages about the nervous system or pages about MS. I know about the first of these, and my condition isn't the second (AFAIK). I would hope that the doctor would have said "You've got MS" if that is what I'm suffering.

I'll have to see if I can come down with something that warrants a trip to the doctor and ask him then!

It does take persistence. You have to remember they are scientist too. Most dr. adhere to black and white proof. It amazes me that Dr. did not use to have all the fanvy equipment OR common lawsuits to contend with. They would diagnose on symptoms,gut,relationship, family history.

Things have changed alot. When it comes to chronic or unknowns they are more reluctant to guess. They rely on percentages too much for my tastes.

Good Luck!~

It does take persistence. You have to remember they are scientist too. Most dr. adhere to black and white proof. It amazes me that Dr. did not use to have all the fanvy equipment OR common lawsuits to contend with. They would diagnose on symptoms,gut,relationship, family history.

Things have changed alot. When it comes to chronic or unknowns they are more reluctant to guess. They rely on percentages too much for my tastes.

Good Luck!~

oooh, people saying nice things about me behind my back .


And, see, you finally got me to come over and post on De Myelin Nation!

YAY!

Hey, it's kea!! to see you here!

The only reason we keep saying nice things about you is 'cos you are nice!

ps: where did you say you were going to leave my money?

Hope everyone's feeling a bit better today. I'm feeling a bit grumpy but can't really be blamed on myelin stuff; except that trying to drag a heavy shopping trolley around on non-existent pavements doesn't help! Why don't car drivers ever think that there may be pedestrians around who are not necessarily slim, nimble & unemcumbered before they dump their wheels all over the pavements whilst parking?pet whinge, excuse me!

Terri.

I am going for counselling and I have never been to counselling before so I do not know what to expect. The image I have of counsellors is something like Counsellor Deanna Trois in Star Trek. Is that accurate portrayal?


kat

Good Luck Kat! I found it the best thing ever, spent a ton of money, it was worth every cent.

There are many kinds. If for some reason you cannot work with them, find another. I fired two! The one I spent my time with was wonderful. There are all kinds of styles and personalities.

Good LUck Kat!