Thoughts on NHS clinic advice?

[keepswimming]

So a bit of background... I've had CFS for over a year now, I've done a lot of research and made changes to my life. Just recently I've had a couple of sessions with my local NHS CFS clinic. I know the NHS leave a lot to be desired when it comes to CFS, but I wanted to take the opportunity as it was there. My view is, get as much information as possible and then hopefully work out what works best for me.

Their general advice on pacing has been pretty good, and fits in with what I already know/have been doing. However, they seem to have some very definite rules about certain things. For example;
Relaxation breaks should be 30 minutes max
No going to bed during the day
No sleep or dozing during the day
When you stop and rest, if you feel tired and like you need that rest, you should have stopped earlier
Rest breaks should be complete relaxation - can't be listening to an audio book, for example

I just wondered what opinions people have on the above. Is this good advice that I should follow to the letter? Or should I be taking a more flexible approach and see what works for me? What have others found - do you follow the rules or follow your instinct?

Thanks

 

[andyguitar]

Or should I be taking a more flexible approach and see what works for me? What have others found - do you follow the rules or follow your instinct?

People Ive known over the years set their own rules as to what works best for them. Everyone is different but the NHS clinics go for a one size fits all approach. Do your own thing is my advice.

 

[Judee]

NHS clinics go for a one size fits all approach

I agree. You have to do what works for you. I actually find the more I listen to my body, the better I feel. I get in the most trouble by overriding that voice that tells me something isn't working for me even though someone "expert" recommended it.

I followed the medical advice of someone like that for 11 years. Unfortunately, it took me that long to realize that even though he thought he knew this disease, he was really clueless but his professional ego wouldn't let him tell me that.

With this disease one size really doesn't fit all.

 

[valentinelynx]

When you stop and rest, if you feel tired and like you need that rest, you should have stopped earlier

I had to laugh at that one... Except for those with mild cases, it's likely that someone with ME/CFS always "feels tired and needing to rest"! Meaning, therefore, you should stop before you start. How does that fit with, "Relaxation breaks should be 30 minutes max"? When have I ever felt rested after a 30 minute "relaxation break"?

No going to bed during the day
No sleep or dozing during the day

Well, first of all, those with severe ME/CFS live life from bed. Often they have severe POTS and can't tolerate being upright. As for sleeping during the day, many of us have sleep reversal, in which we sleep in the day and are active at night. For unknown reasons, it's easier for some of us to function at night.

I really don't know what illness they think they're treating, but it's not ME/CFS. It's more like they are giving advice to people with disordered sleep/wake cycles, which can cause daytime fatigue and nighttime sleeplessness. That's not ME/CFS.

Rest as much as feels right to you. If you still have reasonably normal sleep/wake cycles then it might make sense to avoid daytime sleeping if you can. But, if it's difficult or painful to try to stay awake in the daytime, don't. Bottom line: don't push your body to do things that feel bad.

 

[keepswimming]

Thank you for your answers! You're right, I think I knew this really but you've given me the confidence to follow my gut. Some of the things they've mentioned have been helpful, but others just don't seem to fit what I've already found works for me. I'm normally the sort of person who follows the rules but I think this time I need to follow my instinct, if something feels detrimental then it probably is!

the NHS clinics go for a one size fits all approach

Thanks this explained it well and helped me understand why the advice doesn't necessarily fit what I've learnt works for me!

I followed the medical advice of someone like that for 11 years. Unfortunately, it took me that long to realize that even though he thought he knew this disease, he was really clueless but his professional ego wouldn't let him tell me that.

I guess it's hard, you're brought up to think if you go to a hospital and speak to a professional they will know what they're talking about! It takes some confidence to say, actually, I think I know better. But after all, they're not the ones experiencing it every day are they...

I had to laugh at that one... Except for those with mild cases, it's likely that someone with ME/CFS always "feels tired and needing to rest"! Meaning, therefore, you should stop before you start. How does that fit with, "Relaxation breaks should be 30 minutes max"? When have I ever felt rested after a 30 minute "relaxation break"?

I know! That's what I thought - I'd never do anything! And yes the 30 minute thing... Personally I find I like to be be more active in the morning, still pacing of course and with breaks, and then rest in the afternoon. That works for me a lot better than only being allowed 30 minutes. And I don't think I should feel guilty for doing what works!