Amen ! Well said Robert !
I gather that you're in Wales however Beth, which makes your problem a teensy bit different.
(Assuming that your TATT - "Tired All The Time", the doctor's most common symptom - isn't caused by diabetes, thyroid problems, epilepsy, fibromyalgia, Lyme's Disease or a host of other things, that is.The first thing your doc should do is start to rule them out with tests - you need to find which ones are accurate, your doc won't always realise.)
Obviously the NHS will pay for your treatment, right ? That's what the National Health Service is supposed to do, yes ? Well, not quite. In your case, the problem will be with doctors specialising in CFS, ie. where are they ? And the answer to that, if Wales is anything like Scotland, is that there are none, because the only doctors who specialised in it have either retired or been told that they must pay to run the clinics themselves ! You may have to go private.
You will find that CFS is also known as "Post Viral Fatigue Syndrome" (an American term which is now recognised in the UK), CFIDS (Chronic Fatigue Immune Deficiency Syndrome - a US term) or ME (Myalgic Encephalomyelopathy, a British term which may only apply to a quite narrow subset of patients). The good news is that there is a lot of information about ME, although recognition that it exists is patchy you may be very lucky where you are, there are lots of support groups (I think they outnumber the doctors) and there are proven therapies although there are no hard and fast cures.
I'm afraid the detailed post I tried to write for you a couple of evenings ago got lost by my computer, so I'll just give you a potted version.
- Yes, you can be fine one day and dire the next. It's one of the most maddening things about it. You can also wake up more tired than when you went to sleep ! That's because you sleep in order for your immune system to do "housework"; if your immune system is being damaged, your ability to rest during sleep suffers.
- You may find you can't concentrate on reading or writing very well. (Probably one of the reasons why there are so few replies here on this forum.) In that case, break it up into chunks, and take notes.
- Chemical hypersensitivity is also not uncommon, so things like hairspray, the smell of new glossy magazines, petrol, perfume, marker pens and so on can cause nausea, sinus problems, blood pressure problems, dizziness etc. Guess what the cure there is...
- Studies on ME have indicated that frequent use of antibiotics and a poor diet high in sugar and low in vitamins and Essential Fatty Acids is linked to the likelihood of falling ill with chronic fatigue. It also seems to strike people who are extremely active, non-stop-go types; there is a theory that it is because they are more susceptible genetically, that which makes them strong has an Achilles heel...sports physiologists are doing research, because it is a known problem with top-grade athletes.
- The good news is that diet can make a huge difference. I've never met anyone yet who recovered from ME without a radical change in diet, although antidepressants can help sometimes - they may help balance levels of endorphin-like chemicals that your body is going wrong with. (That ties in with the exercise-addict idea.)
- There is much debate about the role of exercise, but basically if you think of it as being like weight lifting you won't go far wrong. Too much and you'll hurt yourself, too little and you don't improve your abilities; aim to do just a little bit more than would be easy, and rest when you feel you are getting too run down. How much is "too run down" ? If you ever find a way of describing that, I'd be delighted to hear. It's live and learn.
- Caffeine and fizzy drinks are a really bad idea, they just help you to lurch from one crisis to another - causing each one themselves by making your body over-release insulin, which when it mops up all the blood sugar leaves you exhausted.
Ignorance is its own defense. I'd suggest you collect stories of celebrities who have chronic fatigue type problems, and leave them lying about for your boss etc to read. People's attitudes can change radically when they are informed, although you will generally find that close family can be the most stubborn ! (The idea that you have a weird illness is one they often do not want to face.)
Time to go to bed...I have an early morning tomorrow. Hope this is not too much for you to take in all at once.