I was up with the birds again, to no good purpose at all. It just goes like this sometimes and is a feature of the M.E. rhythmless dance that a number of us have to keep step with. Sometimes it involves sleeping 12/16 hours, either continuous or staggered, at other times one is awake and wired after 3 hours, the brain speeding along impossible highways, trying in its own way to make up for lost time, and that way madness lies. Poor brain, I let it have its moment, in a few hours it will have run its course. I have just seen a fox streaking across the end of a neighbour’s garden. Sometimes, when I am awake early, I see the deer walk into our garden. I have seen them lift their heads to the cherry tree, looking for sweet fruit, but this year they won’t find it because the tree will be cut down.
I loved the snow and the cold but there is no doubt that this has been a hard winter. I notice that, apart from Brighton twice a week, I am going out even less than before and might almost venture to say that I am looking forward to the spring, just in case the wind turns and with it a measure of strength is given and the Symptoms die down a little. I would like to have a few (if not many) clear moments which, at time of writing, I have not had for many months, apart from a blip just after Christmas.
Well, but I have got a batch of poems into some kind of order and this feels like an achievement, even if nothing very much comes of it.
I have been reading, as one does, about other people with CFS/ME or similarly debilitating conditions. Often I come across the notion that one should not allow oneself to be defined by whatever it is one has. “I may have (whatever), but I refuse to be defined by it,” or words to that effect, is what people say, and of course I understand this and have said it myself. But. Speaking only for myself (for how can I speak for my fellow PWME, we have our own paths and modus operandi), I recognise that everything I undertake is in some way defined by M.E. The way I write, for example, in short, intense bursts or in pared-to-the-bone minimalist style, depending on what my energy is doing at the time and bearing in mind that when I actually do this the sand in the egg timer is, so to speak, running down. Blog posts, being more of a conversational thing, are something else again – I notice, though, that they are often in the region of 500 words, which seems to be as long as I am able to hold on to a particular thread. M.E. informs the style I bring to any activity and it does therefore, to some extent, define me. I think what people are afraid of doing is degenerating into nothing more than complaint and self-pity, but there is a difference between this and talking about what you do or opening one’s throat in order to sing (of the old, the new, the dark, the blue and the glory). We all have to sing, really, one way or another, with our real voices, in order to be properly alive.
I could probably say more but have gone over 500 words, the thread is wearing a little thin and I have to go to the dentist.
15 comments:
Yup, those sleep patterns are a bastard. Of course we are defined by the illness, no matter how we strive not to be, but it is like anything, it's the way we talk about ourselves, the voices we use that will engage or disengage others. I didn't consciously realise til much later that my book was in short episodic chunks, cos that is how I manage my days.
There is always a fairytale aspect (the good and the evil) to your posts, that's what I love.
Hope dentist not too bad.
word ver: vulin
I'm sure that could be Finnish for something.
Well I'm convinced that this contributed to my being able to read it, NMJ - actually quite rare for me to get through a novel.
Ah, I'm glad you pick up fairy tale. Because I'm not always conscious of this element, but recognise that I always have one foot in that terrain.
Dentist was fine on this occasion because nothing was done - it was an initial appointment to see what he could offer and he seems absolutely sussed about M.E. which is a huge relief.
I am glad the dentist was ok.
I think that our 'conditions' do not define us, but certainly influence us.
I think that's a good distinction, Kahless. But I think the longer one has the condition, the less possible it becomes to separate one's identity from it because whatever it is that expresses your life's meaning for you has to work alongside it, for better or worse.
Speaking about M.E. in particular here, Kahless.
I have to take your journey more to heart. I've been feeling sat on by chronic back pain, which is at the moment quite tolerable. But that it does hinder, has aged me, maddens me. And that reaction makes it worse.
Must be more accepting of the arc of my life.
Your posts often make me feel very, very thoughtful - this being one of them. I don't know if there's anything more to add than that really: except that it's something I'm very thankful for.
Zhoen, living with constant pain is hard and debilitating. The muscle pains one gets with M.E. are qualitavely different to the kind of pain you have I think, but both kinds (and the fatigue etc) impose restriction. I sometimes take painkillers to give myself a break - just one of many strategies. Good wishes to you, this weekend and beyond. For the record, I find your writing style engaging and accomplished, and I guess I'm one of many.
Trousers, These comments of yours leave me smiling :) (could not resist that) - the face that something I said has this effect is good to know.
I mean the fact, not the face. In bed with laptop perched wonkily on its case. Must get one of those tray with leg thingies.
Well I think there's been more than one occasion in which I've made a comment, saying words to the effect that I'll return and give voice to my thoughts once I've unravelled them - and then I never do.
But the thing is, I don't think these thoughts necessarily need to be untangled and voiced - it's enough that they're there in the first place.
Anyway - I'm glad to have made you smile. I'm also going to resist the temptation to make some dreadful joke about facing the facts...
word ver = tanuts - why is it always me?
I've had many an internal wrestle with that "I am not defined by my illness" for the very same reasons as you say here.
I think I am less pendantic about meaning, or rather more open minded about meaning behind the words.
I am not my illness, I am much more than that. But it does shape me, it does, in so many ways, define who I am and what I do. there. I said it. And I am still the same person, my world did not implode!
I think that's true Trousers, and sometimes an inner response doesn't always want to be untangled and voiced. Enough to know it's there.
I think you came very close indeed to making that dreadful joke.
The WVLs (and probably the ghost of Dr. Freud) are on to you, Trousers - and they clearly want you to know this!
Well said, Rachel. I think the fact that we all come up against this doesn't make it any the less meaningful.
I don't know if I am the same person. In essence yes, but at some deep level I have been also been changed by M.E. But by other things too, so perhaps this should go without saying.
Does it define me? Yes in many ways. As Rachel says we are more than our illness, BUT I find it very frustrating when i meet new people and they try to ask me things about myself and what i get up to and enjoy and i wish i could put together one sentence without it involving something about how the illness creates/causes/limits this thing about, or aspect of, myself... but how can they get to know me if i withhold this? So yes, it seems i cannot define myself without reference to it.
Signs, i certainly think you are right about the length of time you have had the illness and it's affect on your sense of identity. We grow and change along with the illness and it's immense influence and omnipresense. We will never know who we would have become and how different we would have been... i don't attach a positive or negative to this impact, BTW!
Hi Ashy, I think that's a good observation - the fact that it's actually very difficult to discuss oneself without reference to it. I tend to toss it out as a fact and don't invite discussion about it unless I sense there is a real interest - people can become quite conflicted about how to respond. But if anyone is going to know me they need to know that I come with M.E.
I know what you mean about not attaching a positive or negative. It helps to be a little dispassionate and this is, in any case, just one of the many things that life can throw at you.
I do actually think that people who have had this a long time develop a strong inner core - of something or other.
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