I can't seem to find my baseline energy level

It's really difficult, and I still mess it up too. I'm not sure if there is a 'best' way of doing things, but rather we've got to keep trying to find what's best for us. I think that just relaxing, being in the moment, and doing what I feel like works best. I find that what I can do does tend to naturally vary from day to day too.

No test for me in the UK I felt abandond with this terrible illness 32 years ago and have just had to get on with it and gradually getting worse. I manage it by resting as much as possible and know it I do too much one day it will effect me the next. if I go away on holiday for a week with no rest it takes me ages to get over it. I know this is going to happen. I have to pace myself. If I am out one eveing it will be another week before i can go out again on an evening. I try only to go out during the day every 2nd or 3rd day and then only in the mornings so I can spend most of the rest of the day in bed. I just get up to cook tea.I find it all very difficult and wish someone would come up with a cure.

All the best. Everybody is different and we all find different ways of dealing with this terrible illness (there I have said it again)

What really gets me is friends and family real misunderstanding of this condition even though I try to explain it to them.

Alison

Hi Raven

I have been the same in the past.. The only advice is pacing yourself from a “doing very little” and increase slowly, it is a skill that I needed to learn so I could discover what is too much for me and what didn’t make me sick again.

I still have relapses where I have over stretched myself physically or mentally and that normally take 3-4 day to recover from such activity. I do not personally think one recovery method is better than any other as each person is different, its finding what works for you.

Exercise at some point of ME/CFS is OK if its gentile and controlled, but the art is knowing when this is and not overdoing it, as there are times when it’s not wise to exercise as it will make your ME/CFS far worst, and hinder any recover. One key thing I have found is be a positive person and always look at the condition, and life in general as a glass is half-full person not half-empty.

i feel exactly the same i was just thinking the same thing about how i only mildly feel better on sundays when i literally do nothing, basically feel like im should be housebound at best,  

EXACTLY:   This is also my issue.....yes, if I decide to go somewhere/do something, I can usually struggle through it...but yep, I then need a couple of days at least to start again....even for me to keep my necesary apprts ( drs, physio etc), I need to Not do anything on the day prior, and then not book anything for at least the next few days....and yes, I guess that's why Im on the computor researching, alwys have a supply of Novels, reading materials etc, as I know that it is impossible for me even to keep social engagements as I don't know from one day to the next what I'm likely to be like...and I am getting very let down with myself for failing my friends (some don't know how bad I am...not because their not good friends, but because I havn't burdened them with my issues, knowing they have plenty of their own)..I had to cancel at last minute on friend's 50th birthday with an excuse which I know sounded weak....but JUST couldn't find the energy to go...

Hello Ravenwood, hello everybody.

My name is Joe and im new here. First time I wanted to get some information, but now I want to tell my story and what I do to deal with it. Im suffering from fatigue since more than 35 years, but only one month ago this diagnose was made  by a psychiater. From the beginning until now it was a marathon from one doc to another. I wasted lot of money to an alternative healer. Without any result. I spent some weeks in three different sleeping labs within 15 years. They found out nothing. And my blood analysis - always good. Thank God. And when all examinations were done so far, my family doctor told me the diagnose depression. I couldn´t help laughing because I was depressed never in my lifetime. At least not without reason. On the  other hand the psyche is acting a part all of the time. So I got some pills, made a psychotherapie and became an out-patient in a psychosomatic hospital for 2 months. As you can imagine - I felt out of place. But what did I learn? Well, I learned  1. to pace myself. This is quite difficult. But believe me - it is really necessary. Everyday I spend some time with doing nothing but meditation. Autogenic training and-newly- Qi Gong are very good for me.  At the  2. I don t set myself under pressure. As for instance, not making  plans. All things I have to do I do them little by little. Or when a friend calls me for dancing next  week - I always say maybe.   3. Meanwhile I don´t fight  the exhaustion too much, because it will be stronger than me and I´ll feel the revenge.   4. I listen to my body because he tells me what is good and what is bad.  5.  I try to go for a walk as much as  I´m able. Sometimes10´a day and somtimes one hour. It all depends on my daily condition. -   Not following all those rules ends up in much more tiredness and exhaustion with all the symptoms like shiver, weakness, headache, vertigo and so on.

Well I guess there is  no simple solution for each of us. We have to learn living with our desease and figure out what is useful and helpful or not. And never give up. In this sense all the best wishes from Joe. 

Truthfully, I am just tired of fighting all the time.  I talked my boss into working at home, and that seems to help a bit.  I can take a break when I need too.  Also, I can lie down somewhat in my lazy-boy and put my laptop on my chest to work.  It's not too bad.  The problem is that I am still tired all the time.  I do feel a little better working from home, but still not rested.  It's like a 25% improvement only.  Sucks!  It seems like I would have to lay in bed, doing nothing, to actually feel better.  But, that seems stupid.  What would I do all day in bed?  TV hurts my ears, and I even get tired when I read.  Stare at the ceiling maybe?  What do you guys think?

You took the words right out of my mouth. All you describe here is exactly what I think and feel. Accepting the desease is necessary. So told me my psychiater. And I know she is right. As for me, I do so. At least I believe this. Because at the same time I m still hoping for the magic pill as well. Hope dies last is the device. And I m also not the guy who can´t do absolutely nothing. This is a big problem. Normally I have to lie down more often. But when I lie around, I cannot sleep. And then i m getting angry about myself. Too exhausted for doing anything and nonetheless not able to sleep. To be honest...I have now idea what all this will come to. I m off sick since 9 months. And I will try a reintegration in some weeks. And then...we´ll see...

 

The single most useful thing amongst all the advice I was given when diagnosed 10 years ago was when I was shown a wavy line representing the energy of my daily life. All the peaks and troughs were lined up so that 3 horizontal lines could be drawn, 1 through the peaks, 1 through the troughs and 1 through the centre. Then follow the wavy line with your finger - on a good day, a peak, you crack on and try to achieve loads with the inevitable slide down to a trough and a bad day. It's a roller coaster which in itself is an exhausting way to live. SO - instead of the frantic up and down wavy life line you have to try to live on a calm straight life line. The line through the peaks is unachievable, not just for us but no one can live at that pitch permanently. The line through the troughs is achievable but life wouldn't be much fun. So you have to aim for the centre line and that does mean pulling yourself up to it from the troughs but it also means pulling yourself down to it from the peaks and not doing so much just because you're having a good day. I had this done for me on a piece of paper and I thought it just made so much sense. I hope my attempt to depict with words has worked because I believe this is what pacing is truly about. Of course life throws unexpected and unwished for stuff at you eg my elderly parents are starting to need more care now but I try hard to keep to the spirit of the centre line in the parts of my life I'm in control of.