confusion over advice on sleep ! help please?

I think it is ok to have it a bit varied! All the more so if you have to be up so early two days a week you probably need a bit more sleep on the other days to compensate.

Fighting to wake up when you don't need to yet seems to go against what your body wants and I imagine it's exhausting and could set your ME back. Just my humble opinion but I've suffered from ME for nearly 10 years so I know a bit about it. We need to listen to our bodies.

I was told to have several pillars of rest throughout the day instead of having a two hour sleep in the afternoons but it just doesn't work that way for me, I need that nap! 

I get very angry with these MEcfs clinics. I went to one ages ago they told me all the wrong things to do. i tried them for  year and it made my illness so much worse, so it took me a long time to get back to my original exhaustion.

I was told not to rest on an afternoon, not to wear dark glasses when it was bright outside, i find even when it is not sunny it is bright for me and also bright electric light i cannot stand.. etc.

. It is such a horribble illness and if something works for you go for it. I would not take any notice of the clinic if it is making you worse. Everybody is different. Needless to say I have not been back to a clinic since. I was going to sign up this year, but after my 15 minute chat with a so called proffessional I decided against it. She was telling what I should do, none of it made sense to me or to my lifestile and I knew ist would make me feel worse. So saved an awfull lot of money. It was going to cost £145 for an hours talk on the phone would you belive, ridiculous. Sorry for my rant.

I hope you go on allright and the best of luck.

I think you have answered your own question. Advice from student services have made things worse.   You have to find what works for you, and you seem to have had had a routine where your body could cope with two days slightly different from the rest.  

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 Dear Leah-Jane

Until I was 40+ I was an obedient patient. What the doctor said I did even although I had had one medical disaster. Now at 74 with three medical disasters behind me I am resolutely my only executive doctor. All the skilled consultants, GPs and nurses are my professional advisors. If I am going to have any more disasters, and there is plenty of scope for those, they will be the result of my descisions.

I am the one who notices and evaluates the tiny changes and indications good or adverse reactions. Of course I notice the big ones and also the really big ones, the really big ones that the proffesionals usually take note of. If this philosophy had been in place throughout my life and the web had been available, which it was not, I would probably have avoided the second and third disaster. The first was the result of the organisation of weekends for consultants. I would still be unable to do anything to prevent the loss of my first child and only daughter at birth. The distress of the young doctor was quite as painful to him as ours was to my wife and I. 

What on earth are you doing contributing to a CFS/ME group discussion? you might well ask. The second disaster was I accepted an inappropriate treatment for chronic fatigue, difficulty in thought and memory, slow and hesitant speach. Only after some ten years of great and continuous misery I refused all medical treatment and with a mixture of very careful diet and prayer I gradually recovered a reasonable state of health, modest stamina, and agility of thought and memory. I think I qualify to give my testimony in this group.

Hi Leah-Jane,

Of course it is alright!  If I was you I would go back to what was working for me.  Only you know your body and how you are feeling.  You are the expert on CFS/ME in Leah-Jane!  I am always worried about people who have no experience of this illness dictating what is right and wrong.  There is no right and wrong - only what works and what doesn't.

Linda

Loads of people just love telling others (especially those with health problem) how to live their lives, even when there is no good evidence to support their claims. Do what works best for you and don't worry too much about what others say. Also - feel free to ask 'what evidence do you have to support that claim?' If there answer is just something like 'in our experience' then feel free to laugh in their face.

I hope you're not stressing out over this. I would go by what feels right for your body. It sound like what the ME/CFS clinic said is easier for you to follow. I'm curious. Is the student services meeting knowledgeable about ME/CFS, or in some way related to helping people with that illness? 

Hello Leah-Jane,

I can only say what I think i'm afraid. I have never been to this type of clinic.

6.45 am  Whaaaaaat. Sleep as much as you can. Dont let anyone tell you to try to be awake when your body is telling you it needs to sleep.

You are ill and to recover your body needs to rest and sleep so that is what it is trying to do, desperately and you are fighting it at the advice of your doctor.

Listen to yourself, listen to your body and don't let enyone tell you that you are wrong.

I understand the specialists ensuring that you have a routine to keep you going and to ensure that you don't become deppressed. However your body knows best. NO GUILT ALLOWED HERE!!!

But that is just my opinion.

;D