In the past few days we have had to have a real push to try and get another room finished in this, seemingly, endless saga of decorating...and no I don't mean tinsel and baubles and trees...I mean Polyfilla and rollers, paint and sandpaper, emulsion and vinyl silk ...and wallpaper. I spent two whole days (with minimal rest periods) wallpapering over the weekend and into this week and I am tired.
This tiredness is veering between fatigue that pleads for me to go back to bed and wired/tired where adrenaline whooshes through me like a torrent and I am almost hyper. Well...not almost...I am. Yesterday somebody said something to me that was perfectly mundane and yet somehow I found it amusing and laughed and laughed until I was crying ...happy tears but laughing all the same..at something not funny at all. Yesterday I was so nattery, nattery and so outside my boundaries whilst chatting to someone on Facebook that today I felt duty bound to send a message for being so over-the-top. I wasn't offensive and the recipient of this 'out-of-control-puppyness' was fine about it all (thank God) but I felt mortified. I felt like I had become the legless one at the party who has to go to everyone the next day and apologise for dancing on the table with your knickers on your head !
Jodi Bassett has written about these adrenaline surges here and now I think of it I realise that this has been going on for years. Whenever I'm tired but in a reasonable phase of health (i.e.not at death's door) I become almost manic....rushing about too quickly, talking at nineteen to the dozen, stumbling over words, rushing through to do lists.....until I go 'phut! I seem to have no internal regulator that knows how to pace. Is that because I have had M.E. for so long....over 35 years....or was I always like this anyway and that has led me to become more ill ?
Certainly there does seem to be a common thread running through the lives of people I know who have M.E.: prone to perfectionism, wanting to care for other people, wanting to ensure everyone and everything is 'all right, putting other people before oneself, and pushing on...regardless...always pushing on.
I've started reading Toni Bernhard's book 'How to Be Sick'. Almost everyone I know in the 'M.E. Community is reading it too. Once again there in black and white is the story of another caring, conscientious individual; always trying to do her best by her spouse, children, grandchildren, her students (she was a Law Professor) ...going back to work despite everything, despite it being obvious (in hindsight...always in hindsight !!!) that it would be better to stop working, stop doing and just be. This is not intended as any criticism of Toni...just an observation: an observation of how many of us seem to follow that path. I know I did. Time and again I fell and time and again I got up, dusted myself off and went back into the fray.
What interests me is the lessons that Toni says she has learnt/is learning from being so ill for so long (she first became ill at the about the same time I was diagnose in 2001). It would seem that Toni has always been interested in exploring a spiritual path and in particular Buddhism and so she has used that experience and knowledge to try and make sense of what has happened to her. Interestingly too, I have also felt an affinity with Buddhism and yet not had the same time or 'push' to explore that way of seeing the world to the extent of Toni. Nevertheless I still find myself nodding all the time I read the book and there does seem to be only one way to really deal with being unwell: to somehow yield to it and accept it and understand that somehow, for some reason this is how it is for you and how it is meant to be. No matter how uncomfortable, how gruelling, how miserable...this is how it is. No amount of wriggling and anger and frustration (though God only knows we all feel those things because we are human, because we are imperfect) will 'fix' things. For now, it is as it is and once that acceptance is there, the situation becomes a little easier to bear.
I suppose this post and the last have a common theme...in that acceptance seems to be the way: not giving in but resting back and 'watching the day' as someone once told me and trusting that somehow 'all will be well'
This tiredness is veering between fatigue that pleads for me to go back to bed and wired/tired where adrenaline whooshes through me like a torrent and I am almost hyper. Well...not almost...I am. Yesterday somebody said something to me that was perfectly mundane and yet somehow I found it amusing and laughed and laughed until I was crying ...happy tears but laughing all the same..at something not funny at all. Yesterday I was so nattery, nattery and so outside my boundaries whilst chatting to someone on Facebook that today I felt duty bound to send a message for being so over-the-top. I wasn't offensive and the recipient of this 'out-of-control-puppyness' was fine about it all (thank God) but I felt mortified. I felt like I had become the legless one at the party who has to go to everyone the next day and apologise for dancing on the table with your knickers on your head !
Jodi Bassett has written about these adrenaline surges here and now I think of it I realise that this has been going on for years. Whenever I'm tired but in a reasonable phase of health (i.e.not at death's door) I become almost manic....rushing about too quickly, talking at nineteen to the dozen, stumbling over words, rushing through to do lists.....until I go 'phut! I seem to have no internal regulator that knows how to pace. Is that because I have had M.E. for so long....over 35 years....or was I always like this anyway and that has led me to become more ill ?
Certainly there does seem to be a common thread running through the lives of people I know who have M.E.: prone to perfectionism, wanting to care for other people, wanting to ensure everyone and everything is 'all right, putting other people before oneself, and pushing on...regardless...always pushing on.
I've started reading Toni Bernhard's book 'How to Be Sick'. Almost everyone I know in the 'M.E. Community is reading it too. Once again there in black and white is the story of another caring, conscientious individual; always trying to do her best by her spouse, children, grandchildren, her students (she was a Law Professor) ...going back to work despite everything, despite it being obvious (in hindsight...always in hindsight !!!) that it would be better to stop working, stop doing and just be. This is not intended as any criticism of Toni...just an observation: an observation of how many of us seem to follow that path. I know I did. Time and again I fell and time and again I got up, dusted myself off and went back into the fray.
What interests me is the lessons that Toni says she has learnt/is learning from being so ill for so long (she first became ill at the about the same time I was diagnose in 2001). It would seem that Toni has always been interested in exploring a spiritual path and in particular Buddhism and so she has used that experience and knowledge to try and make sense of what has happened to her. Interestingly too, I have also felt an affinity with Buddhism and yet not had the same time or 'push' to explore that way of seeing the world to the extent of Toni. Nevertheless I still find myself nodding all the time I read the book and there does seem to be only one way to really deal with being unwell: to somehow yield to it and accept it and understand that somehow, for some reason this is how it is for you and how it is meant to be. No matter how uncomfortable, how gruelling, how miserable...this is how it is. No amount of wriggling and anger and frustration (though God only knows we all feel those things because we are human, because we are imperfect) will 'fix' things. For now, it is as it is and once that acceptance is there, the situation becomes a little easier to bear.
I suppose this post and the last have a common theme...in that acceptance seems to be the way: not giving in but resting back and 'watching the day' as someone once told me and trusting that somehow 'all will be well'
14 comments:
I'm suffering like this too. It's all so familiar. I think I'll go and post about it as I just need to STOP. I've been running around like a blue arsed fly for days now and getting more and more fatigued.
I like the description of you dancing on the table with your knickers on your head. This illness seems to do something to internal boundaries. You're either so tired you can't maintain them and you melt down into a shivering blob, crying into the dog's bowl, or your energy exceeds them and life seems incredibly exciting and do-able - for about half an hour. So you try and do it all in that half an hour. Well, this is what I find anyway.
You're a human whirlwind ;)
It was a real jolt for me when I read that adrenaline article last week. It desribes so perfectly how I would get into the habit of not sleeping in order to get more done and then have a manic period as a result. This was usually culminate in me sleeping for something ridiculous like 18 hours when my body eventually drained itself of that spark.
My own view would be that there is indeed a common link between most ME/CFS sufferers in terms of those unhealthy patterns existing whilst we were still healthy. As you say, hindsight, hindsight, hindsight! We can only hope we are learning lessons from it!
Well this is really interesting to me because it confirms my suspicion that the whole business of M.E., quite apart from any infection or virus does have some link to a personality type. I don't mean its psychological but there does seem to be a link to people who are somehow driven or whose way of being is just naturally boom and bust. Even as a small child (supposedly long before I had any infection or virsu which might have made me unwell) I can remember going and going and going and then suddenly 'phut!.....gone and asleep. I would sometimes come back from school at age 8 or so and be so tired and just go straight to bed at 4p.m. and sleep right through and then be OK. My father used to say I was a 'sprinter' rather than a 'cross country runner' BTW..he meant that in a metaphorical sense since I have always been useless at all sport or physical activity :O)
Later when I was or had been unwell and was always 'teetering' there was a subconscious feeling that I must get as much done as possible while the energy was there or else it wouldn't get done..like walking round with a Big Bad Wolf stalking you from behind every bush, every tree.
Thanks both x
I think the very adrenaline surges you are talking about are what continue to keep our adrenals drained. They're not designed to do fight or flight when they're already so depleted.
And it's not just that we're Type A, but also that there's something about us that refuses to "acknowledge" the little messages from our body, and only "gets it" when our body gives out.............the message we can't ignore.
I'm working on checking in w my body everday thru breathing. When I do it, it's definitely helpful. So WHY don't I do it every day? or 3x/day? !!!!! @#$%^&$#@ (that's American for lots of swearing:-)
Hi Nina...you got here at last :O) Yes I agree and I've been finding breathing very helpful too....well checking in on my breathing...breathing is OF COURSE very useful ! DOH !
I've always wondered whether certain personality types are pre-disposed to this illness. Were we the ones who were so conscientious and driven that we were already living unhealthily on adrenaline surges? Then some precipitating event (for me, that viral infection in 2001) put us over the edge where the adrenals could no function properly -- putting us in a kind of constant "fight or flight" condition?
The sad thing is that, now that we have CFS/ME, we depend on adrenaline surges to get us through. And that just leads to crashes. I had to depend on adrenaline today to get me through a doctor's appointment. It's a vicious cycle.
On another subject, I find it "delicate" to talk to people about "accepting" the illness because they often mistake it for resignation even though it's anything but. I can accept how I am right now AND still be seeking new treatments.
I'm so glad you're finding some useful stuff in the book!
How strange, I was just thinking of writing something about this very thing (adrenaline surges etc). But perhaps not so strange as it is such a familiar part of the M.E. picture. Something that resonated with me a few years back was reading about the effects of solitary confinement and sensory deprivation on certain special category prisoners. Apparently after stretches of this, any kind of small outside stimulus can trigger a most extraordinary and intense euphoria that is followed by an equally intense comedown. I do sometimes feel as though - in these hyper/manic phases - all the life that has had to be shut out rushes in and it is almost impossible to deny it. I find myself making ridiculous commitments that I know I will have to unmake, but when I'm in the grip I can't stop. And I have never, ever got the hang of the pacing thing. Sometimes one just has to do it: dance with knickers on head, knowing that afterwards one will have to explain, apologise, pay for it all. Yesterday evening I said "wanky" about five times at my book group, barged in late, barged out early, interrupted people and generally, you know. And then didn't sleep a wink. Guess what's coming next?
Hi Toni. Lovely to see you here. Well my take is that really there often is a personality type with M.E. I've written before about HSPs (Highly Sensitive Person) and I think that and the conscientious nature are a sort of timebomb waiting for a trigger ...such as a virus. I know what you mean about telling people about accepting the illness. It does sound like resigination ...'I'll just lie back and give up' to people who dont get it. What is very intersting to me atm is that as well as reading your book I am also reading 'The Shaking Woman' by Siri Hustvedt andshe takes another look at sources of neurological conditions.
AH Signsie....thank God its not just me. I do the inappropriate language thing too: get all overexcited and my mouth runs away with me and people think I'm so funny, saucy sometimes but sometimes it feels out of my control. Mind you, with me, its also my thing about wanting to amuse people, appear sociable, affable. Sometimes if we've had visitors and I REALLY haven't felt up to it or wanted company, but there's no putting off, I somehow 'pull it out of the bag'...sort of 'Showtime !!!!!!:O)'...and I'm 'on'. It's exhausting. Sometimes I've promised myself beforehand I'll stay quiet and use less energy and remain in the background...but I just can't do it. People think I'm so much more confident than I really am....... Hope you don't crash too badly (*)
So it's not just me then who feels the need to 'light the blue touch paper' and then retire? Like barging into meetings and leaving early (a classic for me too) or making a highly innappropriate aside that has most of the group laughing heartily but one or two shifting uneasily in their seats. And then me waking up at three in the morning, thinking about it and dying of embarrassment. I think I'm like some sort of amoral nun. An insensitive idiot in an HSP's body. But I get so BORED with normal life.
Has this post just uncovered yet another weird shared trait ? List goes on and on ! No wonder people think we're all crackers. Hahahahaha !
I agree with others and confess to being - well, having been, seeing as I am now retired - far too conscientious in my work, needing to have it right - I am sure this came from underlying anxiety and lack of self-confidence, in spite of all the evidence!
But I think we are all saying - be cool! - accept, assess where you're at and respond accordingly. And self-knowledge and self-acceptance are useful to have.
Take care
Adam
Hey Cusp, The adrenaline surges are a most bizarre feature of this illness...I can relate totally. Well done for the wallpapering!
I have just finished the Elis. Tova Bailey Snail book and loved it. I liked that her illness is almost secondary, an interesting and refreshing perspective. And the way she doesn't reveal the name of her illness til the end (though we already know that she has M.E).
I am still curious about Toni Bernhard's book but I was a wee bit alarmed at an exchange on Reading the Signs' blog where they discussed the relative 'luxury' of being able to give up work. It is, of course, not a luxury, but a necessity when you are severe/moderate. Perhaps I over-reacted to this extract but I always fear that people who don't have ME may read stuff like this then think, Oh, those that can afford to can give up work. The reality is it is nothing to do with options or choice.
hey all - another thing - I once read that adrenaline can make you sick - many athletes, for example, feel ill after their exertion and back in the days that I played rugby, I was dreadfully nauseous for 24 hours after a big game.
I recognise everything you are saying. Been there, done it, etc. And like you, I've also observed many PWME sharing similar personality traits.
The worrying thing is that as my activity levels increase, I notice the same old patters coming back. The fact is, taking on new challenges like my course doesn't mean it's new activity in addition to what I was already doing, but often it's *instead of* so it means that other areas of my life are neglected until certain tasks have to be tackled, as well as struggling to be well enough to get my coursework done on time. So what happens? The old driven, multi-tasking, high-octane rush re-emerges and here I am, back in the boom and bust cycle.
I want to have a life, just a normal life would be fine. I don't want to be some kind of conspicuous high achiever. But in my desperation to manage the everyday and mundane - participating in the world on a 'sometimes' basis - I make an enormous effort, knowing that I'm going to pay for it but I keep my fingers crossed that I'll get away with it.
No, it's not sensible. I know that. Taking part in normal, everyday activities becomes more like some sort of thrill-seeing extreme sport and I get an incredible high from just doing something ordinary. And when I don't feel up to it, I find myself pushing and pushing and not listening to my body. Although I was severe and in bed for many years, and believed that when I was better I'd be 'good' and not push myself so hard, it's as if those tendencies are hard-wired into my psyche. Resting makes me restless, no matter how exhausted I may feel.
Post a Comment