Myalgic Encephalomyelitis Awareness Day

bags I can't imagine how awful it must feel, and I'm filled with admiration for what you achieve whilst suffering from this.

I don't have it as badly as many people do but I have it enough to be able to imagine how awful it can be.

I was diagnosed with this some years ago, but have never felt secure with the diagnosis as I do not think I am at all typical. My main symptoms are constant giddiness, nausea, tiredness, and a pain in my ear! As I also have vestibular migraine, it is difficult to disentangle the two. Personally I think my problems are mainly hormonal as they started when the hot flushes did.

I have so much sympathy for those who have CFS in a major way - life must be such a challenge.

thatbags Thanks for posting the tweet. Yes, it pretty well sums it up, doesn't it? I was diagnosed back in 1997.

Yesterday I went to the family gathering for the fourth birthday of one of my GCs. Five GCs there, in total, plus the two sets of parents and us and we just played and ate light food, but today I'm struggling to function at all.

I've always been very conscious of the fact that, most of the time, people look well, so there's nothing visible to indicate that you have a very debilitating health issue. When people see you out and about they don't realise that for the rest of the week you are unable to go anywhere due to the after-effects!

I'm lucky, although I was initially bedridden, I improved enough to be mobile, although I function at a much slower rate than before - and still exhaust despite living a slow-motion life! All the other attendant symptoms fluctuate making life a tad unpredictable to say the least!

Work went by the board, although I've had a few part-time jobs, but my health went down the pan each time.

The worst symptom is the sheer bl***y frustration and I know I'm my own worst enemy as I won't give in when I should, I try to battle on. It never pays, and I drive my OH mad because I carry on doing something until I literally drop. I'm quite often in tears because I can't finish something I've started doing.

ME still seems to be something that the general public has no real grasp of and I've recently heard the comments that it's 'getting tired, isn't it?' or 'I've heard of it, but don't know what it is'.

It doesn't help that ME and CFS (Chronic Fatigue Syndrome) get lumped together, even by the medical profession, despite the fact that they are different conditions.

It also gets a bad press because it's often, even now, implied that it's 'all in the mind'. NO, it isn't!!! My mind tells me constantly what I'm going to do that day, but my body gives up on me!

Apologies for ranting, put it down to the frustration! Plus the fact that it's taken me ages to type this as I keep making mistakes - finger/brain co-ordination in trouble today

Yes, minimouse, the sheer bloody frustration is one of the hardest things, isn't it? I'm getting better at recognising my limits and only doing stuff for what feels like very short periods, but it doesn't seem possible to avoid all the pay back. And then there is just being in pain all the time. That's very wearing in itself.

It must be very very hard for people who are bed-ridden! At least I have some energy even if it runs out before it should.

for you.

Sorry to hear how this dreadful condition influences your life.

I am guilty of confusing ME and CFS, so maybe you can enlighten me about the difference please. Perhaps you have a useful link maybe.

I didn't know the difference between the two illnesses, so I've just Googled them.
www.hfme.org/comparisonchart.htm

Very interesting and shocking, I didn't realise the half of it.

B

Lona Thanks for the link, it's very informative and is better than many articles I've come across.

Thatbags Thank you for the I'll send you a and as I don't suppose a would help much!

I consider myself extremely fortunate that, when I was rushed into hospital years ago, the consultants and my GP were enlightened enough to diagnose ME at a time when 'Yuppie Flu' was the term bandied about and many patients were handled very badly.

MiniM - I feel dreadful. I meant to give you flowers too.

I agree definitely not "all in the mind". Finally got diagnosed in 2007 after many years of mis- diagnosis. Specialist felt I had probably had ME since a child. Play times for me were a lovely chance to find a corner of the playground and sleep!!
Pacing yourself is the key and being kind to yourself - not always easy

Ffinn please no apology needed!

I do not think that labels are important - the only reason it is a sore topic for sufferers is because of the "yuppy flu" designation by the media, and sadly by many doctors. Hopefully this is now in the past and there is more understanding of the condition. There was also a tendency to label it as a mental health issue, partly because anti-depressants do have an important role in treatment (as indeed they do in many other conditions).

The condition is truly debilitating for sufferers and the frustrating thing is that the treatments are so ineffective. I saw an ME clinic and they really had nothing whatever to offer except to say take it easy - which was precisely what I did not want to do, as I wanted to live my life and not to "loll about" all the time! But it does seem to be the way forward.

Mine began acutely when I just fell to the floor on getting out of bed one morning. I had had the mildest of viruses with a temperature a few weeks before and I was in the throes of the menopause; so a triple whammy!

I do have days when I feel everything is such an effort, but I make myself get on with things, taking frequent rests. It is a psychological boost to get something done, however small, even on a bad day.

Mishap "It is a psychological boost to get something done, however small, even on a bad day."

You're so right about that. When I was first ill, I used to set myself small tasks that a) were accomplishable with minimum effort and b) it didn't really matter if they weren't completed. But oh the sense of achievement if they were completed! Yes, a terrific morale booster

Mishap I think one of the problems with diagnosis, particularly regarding women, has been that ME symptoms can be put down to 'Women's Troubles' aka 'The Change'. So many of the symptoms coincide.

Like you, I had a viral infection to start with and just went downhill from there.

There are so many theories as to the cause, Epstein Barr (glandular fever), pesticides (organophosphate exposure), multi-chemical toxicity - the list goes on. It seems that not everyone will have had the same cause, in the same way that not everyone has the same experience regarding symptoms - some people have all the symptoms, others only a few, plus the severity of each symptom varies. It's a minefield!!

Gosh. I'm so sorry for everyone who is dealing with this illness. Virtual seem rather inadequate, but I'm sending them anyway.

Thank you Grannyknot Virtual are very nice to receive, too!

My SIL has fibromyalgia. For a few years it was thought she had ME and then she was rediagnosed.

I asked her what the difference was between the two and she said the former was worse than the latter.

Petallus I'm so sorry to hear abour your SiL. I have a family member with fibro. It means that often the sufferer is in constant pain and in some cases cannot even bear to be touched. Even cuddling a baby becomes an ordeal rather than a pleasure because of the sensitivity. Fibro and ME seem to be linked, although it doesn't mean that if you have one you'll have the other. Perhaps there's a genetic link or predisposition (just my thoughts, nothing official!)?

Being in constant pain and trying to live life is exhausting, so it's understandable I suppose that ME may have been considered in the first place, especially as ME is painful as well. As I said on a previous post, it's a minefield!

There's been so little research done, hence the Awareness Day to try to bring it to people's attention.