Managing energy huge highs and lows ?!

I have been refferred to the ME clinique in York by my GP. It has taken 3 months to happen. I go on June 6th. I have had ME for 32 years and have managed it by pacing myself. I know when I go away it will takes days to recover when I get back and I will feel exhausted most of the time I am away. It has become worse over the last 3 years and espaecailly over the last 5 months since I injured my shoulder hence I have asked for a referrel. (It has taken so long because my Doctor forgot twice and then reffered me to the Leeds clinic!!!!) I had to keep ringing up to see what was going on.

Anna, the main advice I would give is that when you're having one of your more "normal" feelings, just don't do too much, in fact try to structure you're life so that you do a lot less generally, otherwise you'll be following that boom and bust cycle all the time and gradually getting worse as you do.

If you're getting bad post-exertion malaise, the answer is ... don't do the exertion. It's irrelevant how nice experiences are, the more of them you do the more you will continue to see-saw between the extremes, the target is to live as even a life as possible and when you manage that, you'll know exactly how much energy you can expend without paying for it too highly and life will be a lot more pleasant.

A bit of a pain to implement I know but hey, who said having CFS was easy...

 

I was so pleased when I read your post because I can really realte to what you are saying. I too have been through the feel great for 2 weeks and then absolutely awful, known as the boom and bust cycle. I was beginning to think that it was a cycle I couldn't get out of and then my GP told me about another CFS patient who was now getting back into a serious athletic event, he used to do before CFS hit and when I asked how he did it, she said pacing.

Ok I have heard all this before but now I took it seriously. So as others have said I looked at what I was doing during the boom days and said that is way too much. So I cut it right back and it took quite a while to work out the balance and then I noticed that I didn't bust as much or went longer before I busted again. Yes it meant that things didn't get done, but this is short term pain for long term gain.

Using this information I slowly worked out what I could do and built up from there. I am so pleased with the results as I no longer have major busts, I still get short ones of a  couple of days but now I can go weeks without a problem.

By my previous standards I am no where near leading the life I use to, but it was fairly hectic but now I know that I can do a lot, but not all of the things I want to do. The end result is that I am now actually doing much more, by doing much less on a daily basis, and hopefully that makes sense.

I am sure you can do it but its not easy, all the best

Hi Anna, they call it boom and bust and it's true.  I'm a brilliant boom and bust person, I do it several times a day, day after day.  I love that feeling of being 'normal - a 'boom' for me'.  Being able to move at a slightly slow pace rather than an extremely slow pace.

I agree we shouldn't do it.  I even had a board made up for me next to my computer of a Hare and a Tortoise saying "A tortoise can complete more than one race".  Unfortunately I have another sign next to that which says "Take my advice I'm not using it". 

They are right, we should work with the energy we have rather than the energy we wish we have.  I've read you should try to end the day with some spare energy.  My problem is I don't realise I've pushed myself until I've gone too far. Therefore I've bust! 

Sometimes we have to except a bust in order to do a particular thing.  I need to try to consider how my busts affect me and others.  For every boom I must bust.  

I should try a 'trickling' level more.  xxx