BBC Radio Bristol (June 17) (PACE Trial, etc.)

[Virtuousbumblebee]

Thanks everyone for their advice. I'm lucky in that I only have it mildly, and can still function; I just find I can't work AND have a social life - it's one or the other.

TBH if I let my body have it's way, I'd never do anything. For instance, I've resumed proper flute practice which I haven't done for a year. I've been practicing daily for a week now and did some flute practice yesterday. My muscles have decided, that after a week of being ok, that last night they were going to play up and spasm. The paresthesia is back in my left ring and little finger, which is really annoying me today.

Yet I can go to Moscow and London for a week and feel generally ok (until a couple of weeks later and it hits me), so I don't get how the reaction degrees and time can vary!

As for taking time out - my supervisor strongly recommended I don't. As it was, this whole debacle delayed the completion of my MA which meant I couldn't start the PhD until January, and then switching part-time in April. I'm having enough motivational issues now that she feels (and I'm inclined to agree) if I stop I'll find it even harder to start again/ TBH I doubt I would continue if I suspended studies.

 

[usedtobeperkytina]

VBB, do you want to lose half of your ability to function now or lose almost all of it later? If you truly have CFS, trying to live your previous life will make you sicker.

For years, I pushed on with fatigue and other symptoms creeping in greater and greater. Then in one night, I had a wave that put me in the pit, I call it the "plummet."

Best advice I got was from a nurse who has CFS and had improved enough to start working part time. She said, when you feel the fatigue, your body is saying what it needs to heal. This is like the flu, where the best thing is fluids and lots of rest. Think of your body as like a baby. Yes, you can do some activity, but for only short periods. You need food often and rest often. Our charge doesn't last as long as healthy people. And if you go past your limit of charge at that time, you go into debt. And with that energy debt you must pay off in rest, you also pay interest in pain and other symptoms.

Much better to budget and not spend a lot of energy, save energy, just as with money than to spend all you have and go into debt for what you haven't got, only to have to pay it back with interest later.

Remember, some people with CFS are bedridden, they can't even speak and they have seizures daily. This is serious stuff. You are not well, so you can't act well.

I send you this to help you see how serious this is: http://www.youtube.com/watch?v=lqovJijwhJM&feature=related

Some people with CFS have their condition compared to someone with AIDS two months before their death.

It's a different mindset. And you may have to grieve your losses. But you must give up to gain it back in the future.

Tina

 

[Dolphin]

Esther is absolutley right that you have a much better chance of recovery at the earlier stages.

Purely anecdotal, but I strongly suspect my chances of recovering would have been much better if I'd not been intent on pushing on regardless (with university and then work) when I first became ill.

Obviously, only you can judge what is best for you in light of your circumstances, but, if I could make a suggestion, please do consider taking time out if you feel you need it or think it would help. A 'lost' month or even a year might seem like a big deal to you now but might be the best thing in the long run.

I'd agree. Although in my case, I was pushed by others but I suppose if it takes over 5 years to get diagnosed (as it did in my case), people can lose patience with you.

Of course, plenty of people with a post-viral condition will probably not have ill effects from pushing through a bit. It's all a question of percentages. Just as plenty of people have drunk (alcohol) and driven and not had a crash.

I was mild for first four years (once I gave up sports), severe for the last 16 years - not much better than the people usedtobeperkytina describes.

 

[Sean]

Historically "pacing" was a term used by ME patients in the 80's to try and describe how we tried to manage the disease. It was then hijacked by the CBT/GET brigade and now can mean anything at all.

Agree with that. The psych brigade have been slowly diluting and smearing out the difference between GET and pacing, redefining GET as pacing (or vice versa), and indulging in a bit of self-serving historical revisionism. IMHO.

Purely anecdotal, but I strongly suspect my chances of recovering would have been much better if I'd not been intent on pushing on regardless (with university and then work) when I first became ill.

Similar story here. Took five years to get diagnosed, and I think that the lack of knowledge and opportunity to start properly managing it* is what has landed me in the serious chronic category. Though I still think I would be fairly sick even if I'd had the best of circumstances at the start.

*in the early stages

 

[usedtobeperkytina]

When I plummeted, I bought a book by a dentist in Australia who has CFS.

It was all about how to get better. I think he spoke about his patients also. (Well, now that I think of it, he may not have been a dentist but a regular doctor.)

When I read that he advised going to bed and not doing anything but going to the bathroom and bathing for three months, I had a mental adjustment. That was unthinkable in the life I had just six months earlier. At the same time, I got the CFIDS Chronicle that said those who are diagnosed and start treatments early are more likely to get better. (I don't know if this has held up in other studies.) So I realized that I needed to take the loss in the short term in order to not lose the rest of my life.

It was a paradigm earthquake.

Tina