farnam: (Default)
Ever read the 'spoons theory'? I know anyone looking at this has, but just in case, here it is:

butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

It has its uses, I suppose, but in my opinion is grosly over-used. As I see it, there are separate problems with both the story itslef, and with the use that is made of it.

First and foremost, I'm a pedantic b!tch, and need to state clearly that it is not, in any way, a theory, its a frigging metaphore, for crying out loud. Not a theory. Thank you. Anyway, on to the more fundimental issues.

The metaphore itslef. As I said, its useful in many ways, but its greatest failing is in the fact that it pre-supposes a dichotomy. You are healthy, or you are sick. Most people are healthy. Most people have limitless 'spoons' (a metaphore for energy/physical strength/capacity). Any time, in any context, a dichotomy is used, failings occur. The world is NOT divided into the healthy and the sick - many, most people have health privilidge, in that thier life does not have to actively revolve around illness and/or disability, but thats not the same as saying that they will never catch a cold, and have lingering fatigue afterwards for a month or two because they couldn't aford the few days in bed to recover that they really should have taken. Or are prone to migranes that are crippling when they strike, but are fine the rest of the time, or similar. Thats my biggest gripe with the story, I don't believe that anyone has limitless 'spoons'. More about that later when I propose my alternative 'bath' metaphore. Secondly, it presupposes that all illnesses are illnesses of loss of energy. Not all are. Some are more caracterised by pain than fatigue, and some by other features - loss of capacity to breath during an asthma attack, for example, which is still a serious illness (people die of asthma attacks too), but can not fit the 'spoon' mataphore. Again, more on that in a moment.

And on to the use that is made of the metaphore - at it's simplest, it is basically a story in which the word 'spoons' is substituted for the word 'energy'. And its cool and trendy and a great way to show how with-it you are to always say 'spoons' and never energy. And this is my next big gripe - the use it is put to (not a problem inherent in the orriginal writing, but in its subsequent viral popularity). I can't get to the pub tonight, my totally-living-with-health-privilidge friend tells me, becasue I've been out every night this week so far, and I don't have the spoons. Hold on a minute, stop the clock. There is NOTHING abnormal, or beyond the standard human condition, to not be able to socialise every night of the week, and still hold down the day job. The 'spoons theory' was written by a woman with Lupus - a very, very serious illness that significantly reduces life expectancy. And in telling her story about the spoons, she was trying to explain the difference between her and you - but you have gone and colonised her words - and in doing so, not actually heard a word she has said! Read her words again, anyone who does this. noowhere does she try to claim that her 'spoons theory' (cough, cough, metaphore) is about all chronic illness, all invisible illness or any such thing. She claims its about LUPUS. So, in my opinion, the many, many people who use it to actually claim 'I'm tired' are in fact being very disrespectuf, becasue they are suggesting that the experience of a severly ill person with Lupus is nothing more than thier normal level weiriness.

It also doesn't count for all illness, chronic, hidden or otherwise. But it is widely promoted as if it did. And in doing so, it then hides, minimises or obscures the very different difficulties that different illnesses bring. Take the aforementioned asthma for example. I've had asthma all my adult life. Asthma does NOT take away my 'spoons'/ energy on a daily basis. I do not have to stop and think 'can I have a shower today'? becayuse of my asthma. I DO have to think 'can I walk down that aile of the supermarket?' becasue of my asthma, because perfumes and cleaning chemicals trigger attacks in me. I have only mild asthma, it is true - although, it always stuns me how much is in the perception of the person experiencing it. I know so many people with asthma who have never yet had to be rushed to hospital with an asthma attack, and consider myself 'mild'' because it only happens to me very rarely. My sister in law calls unnoticable bouts of shortness of breath 'asthma attacks' and from her reactions to me when I had a very mild, needing no treatment but real wheezing episode in front of her, she had never even seen that happen to anyone before. And totally paniced. And I want to go 'arrrggggg' becasue I try and tell her about the things I can't do, and she'll always go 'me too', and then try to out do me, but she has no real conception of the word 'can't'. And thats my problem with the spoons theory - everyone applies it to themsleves, often in the most utterly innapropriate ways, and so still end up with no concept whatsoever of the distinction between themsleves and the person that really really can't do stuff, that really really is very ill with reduced life expectancy.
It all comes back to privilidge denying which happens on all layers of privilidge - race, class,gender, sexuality and so forth. None of these things are dichotomies, but lots of people experience privilidge, and many deny it flat out. And so it is with the people who's lives do not have to revolve around illness (by which I do not mean don't have some health issues, but whoes lives/all daily activities/employment prospects/family formation chances etc are not dictated by them) colonising the language, metaphore and imagry of the ill saying 'me too' all the time, and thus denying the reality of those without health privilidge. But that failing was built into the orriginal 'spoons theory' by its use of dichotomies, and its failing to understand that, as conterintuitive as it sounds, the healthy are ill too. (as indeed the ill can be healthy too, in specific ways, for every illness/disability a person has, there are a gazillion they don't)

And so, I said I'd propose an alternative to the spoons theory, and being the saddo that I am with too much time on my hands, I've actually put a bit of thought into this over the last week or so. For me, my experience of physical strength is like a bathtub, with a dripping tap, and an outlet that allows the person to pull the water (physical strength) out on demand.
Everyone has a bath. Except its not a bath preciesely - becasue we all come in different shapes and sizes, and our baths of strength come in different shapes and sizes too. An olympic athelite may have an olympic sized swimming pool of strength to draw on, with a fast waterfall of re-flow to replace anything used up - but watch the uber-healthy marathon winner and they will still probably fall to the ground after they have won the race, becasue they have just drained thier olymic-sized-swimming-pool of strength, and need to just lie there on the ground until thier fast flowing waterfall replenishes it a bit.
A normal healthy person has a normal household sized bathtub with a normal flowing tap - so, they can't run a marathon, becasue they will not have that level of reserve, but they can run for the bus. And arrive, puffing and panting and haveing to bend over and lean thier hands on thier knees becasue the bath-tub has just been drained, but let them sit on the bus for 20 mins, and thier normal flowing tap will have replenished the bath, and they can still jump off the bus and go to do thier days work. For me, my bathtub has, slowly and insidiously over the last few years, shrunk to a little sink full. With a clogged tap that will only drip at a slow steaady pace. So I can never run for a bus, no matter what, becasue my maximum reserve will never get that full. I can manage to get to the bus stop slowly, on my crutches, but that will empty my sink. And the drip of replenishing water will not speed up in response, so that will be me for the day. My sink-sized bath-tub will stay empty until after I have had a nights sleep.

Now this is important to me to expalin it in a couple of ways. First of all, there is the dichotomy issues. Simply becasue I've explained it a little differently, and my metaphore allows for all bath-tub owners, not just the ones who have shrunk to the sink, I'd be much less offended at someone saying 'my bath-tub of strength is empty' than waffling on about spoons when they clearly have no idea what its really like to have lupus/ other serious strength draining illness.
But the reason its much more important to me to explain this in this way is becasue of the variability of my personal illness. becasue every day I get a little sink full (although some days its bigger/faster replacing than others, its always tiny compaired to pre-sick me). And I get to make hard hobsian choices about what I will use my daily sink for. a shower? That'll use up a good bit of it, so thats something else I won't be able to do. A walk to the shop to buy food? I won't cook that day. Hurry down the stairs to answer the phone? Not leave the house at all, not even to the corner shop. but it doesn't mean that I can't once hurry down the stairs or cross the road to the corner shop, it just means I have to choose between those two. And I get sooooo very tired of the 'but you could do it yesterday' attitude I encounter. And my mother is the worst culprit, but so many people do it. How come if you can do this, you can't do that. becasue doing this used up my sink-full. Thats why. How come you could do it yesterday but not today? becasue today I used my sink-full for something else. but equally, I get just as tired of people not appreciating that using my sink-full, to its limit, each and every day is important to me too. You won't be able to do that, you can't do that, are you sure you can cope. its my sink full, only I know whats there, and even if I misjudge and end up lying on the street unable to get up, I would like to be let make those mistakes/judgements for myslef. The marathon winner gets critisism from no one for falling to the ground after winning the race, but if I fall to the ground I'm not supposed to try going out again?

farnam: (Default)
I don't know if I will get better or not. That is indeed the big question. And its the one consuming me right now. I need to battle, scream, yell and fling myslef at this illness until I beat it, but there are two ways it could go. I could spontaniously get better soon, go into remission as it were, or this could be it, this could be my new level, and I have to adapt, learn to cope, figure out how to deal  with this amount of physical strength I have now.
I hope to return to better than I am, but hope is a funny thing. It can only exist in the presence of fear. If I wasn't afraid of the bad outcome, I wouldn't need to hope for the good one, I'd simply know. And the hope-and-fear are atrophying me. I don't see a clear path through the dangerous swamp ahead because I don't know which of the paths I see ahead of me will be the real one.

I've been thinking about it, and one thing I particularly fear is that, if anything, I've been misleading the doctors. I keep talking of 'massive attacks' where my symptoms get suddenly worse, followed by improvments and steadying out. But I bought myslef my first disability aid yesterday (more on that later) and it really set me thinking. I've been so busy telling doctors about the worse times and the better times, but what I'm really telling them about is not the underlying illness but my coping skills and ability to adapt.

When this illness first hit I fell apart, and played up to it, and say 'I can't' a lot. The doctors on exam would ask me to squees thier fingers and I'd go 'uhh' and do something pathetic and not try becasue I was terrified by this sudden loss of mussle strength and needed them to see how bad it was, and they saw my lack of effort and wrote me off as a fraud. but it only took the first 6 weeks or so before I decided, fuck, I'm going to beat this thing, and began to find ways of being strong again. But I was already not seeing the doctors any more.
This time around in the hospital I didn't do that. When they said 'squeese my fingers' I'd enjoy the chance to cause some minor discomfort to the doctors in return for all the discomfort they caused me, and from that they were able to see the illness more accuratly - a mussle weakness that is profound in my upper arms and legs but does not affect my lower arms and legs when I'm lying in a position that my sholders or hips are supported. I've been telling them this ALL ALONG, I can knit but not reach something down from a shelf, ever. But of course nothing I tell them has any validity until they can see it for themselves. And then still not.

And so, the question becomes, did I get over the loss of strength the first time not because I spontaniouly 'got better' but because I learned not to put items I need often on high shelves, and not to reach up, but to stand on a stool to get it down? And so my illness stopped being visible. Because if I'm not trying to do something I can't then there is no visible illness. Normal adjusts to what I can do, and then my life becomes 'normal', I don't have to see myslef as a sick person, and all importantly, others don't have to see me as a sick person.

I think in particular about the first year I lived here in England. That was the key time that I felt 'in remission', that I talked about (wrote here in my journal about) being OK, all the neuro stuff dying down. But as I think about it, I can think about a million adaptions I have made. What was significant in that year was that, on moving country I had no choice but to re-write my life, and did so based on my capabilities, and so created a life without physical strain.  I took a consious decision when I moved over that I may be living in the heart of London, but I would not try to go and see any art gallaries or museums, because thats the kind of walking that triggers the weakness fastest. I met friends in hiking dykes, but laughted when asked to join. I leared to shop on the internet as I can't do supermarkets. I bought all kinds of different gadgets for the kitchen to accomodate the things I cannot do. And slowly, insidiously, almost beyond my notice, the tremor spread from my right to my left, the weakness from my hips to my sholders, and all this migration where the illness colonised new areas has happened NOT when I've been in a 'massive attack' but during the coping times, where I've adapted at the same speed and not let it interfere with daily life, and not gone running to doctors saying 'its getting worse, its getting worse'.

But now the illness has hit a critical mass point. I cnnot walk without walking aids. I cannot do simple things like shower or cook food without massive difficulty, and its been time to take my head out of the sand and yell for help - a help that has not been forthcomming. But even in yelling for help I've been going out of my way to tell the doctors 'because this has happened before, I know its only temporary, simptoms will not go away, but they will lesson off again'. But what if they don't? What if the only change in the past has been me coping, and the only change in the future will be me coping?

And so, yesterday, with fear and horror and disbelief at what I was doing, I ordered a 'perching stool' over the internet - a tall stool with a sloping seat for people who are 'less able to stand' to lean on when doing kitchen work and so still carry out tasks at a sink or counter. And I can't help but wonder - will this be the new remission? Crutches and wheelchairs and perching stools? Because up till now my mantra has been I'm not disabled, just a little differently abled. And what of the future - do I move house, install grab bars by my shower and toilet (ever tried to wipe yourslef when your legs won't lift you the inch you need from the toilet seat? I really need a grab bar for beside the toilet right now) And so, I think of coping strategies, but they all involve major changes I can't aford, like moving house, or items like grab bars that are unambiguously disability aids.  And I'm not a happy camper right now.

farnam: (Default)
I am 100% out of cope.

yesterday morning I thought I could cope, because I hadn't tried yet. I phoned work and asked to come back off sick leave - no more reason to stay out, if things aren't going to change. Work made an appointment for me to see occupational health for the 22nd to assess if I'm fit enough to come back. Yesterday I thought that was good, today I think there is no point going for that appointment. There is not a chance in hell.

Since I got home from the hospital wednesday night I've eaten twice - a pizza Susan bought for me, and a bean-burger in First Out last night, except I was too tired to eat the second meal, it kept going up my nose instead of down my throat as my throat spasamed instead of swalloing properly, and I just threw it up again.
I know I should eat, not in a hungry-hungry way, just in a logical 'eating is sensible' kind of way, but I cannot stand without the crutches long enough to open the tin of beans, or pop the toast in the toaster, so not eating becomes the easier option, and I know that can't be helping with the daily worsening weakness.

I got out of the hospital wednesday night, felt like death, and slept after the pizza. Yesterday I stayed in bed all day, and then headed out to the usual meet-up. Big mistake. even only 2 weeks ago it would have been the sensible thing to do. Yes, the yourney is hard, and takes me an hour and a half instead of half an hour that it should, but once I get there I can just sit down and have people bring me what I need. It actually is easier than cooking at home. The First Out staff are lovely and know me well. Except I couldn't get there. I just couldn't walk even the tiny short distances between tube conections. I ended up lying on the street, phoning friends and asking them to come and get me. I sat for an hour, tried to eat, and headed home. Except I ended up lying on the street within yards of the pub, and deciding that the 20 quid for a taxi was worth it, because it was that or an ambulance. I wasn't getting up again. Friends had to call the taxi, and the taxi driver had to pick me up and put me in it.

Thismorning I tried going to the shop accross the road for some urgently needed cat litter. The shop is right across the road from my house. it took me three quarters of an hour and I had to lie on my floor in the hallway and just shake when I got back.

This afternoon I had wanted to meet Conan for coffee somewhere in town, and thisevening I wanted to go to the gay kiss-in. Tomorrow I wanted to go to the Hat party. I'm profoundly realising that none of these things are options. Not unless I use taxies door to door, which I cannot afford.

But if I cannot travel from one place to another on a simple short journey that just involves sitting down and socialising at the other end, then how the FUCK am I going to get back to work? I feel profoundly angry right now, and all out of cope. Its probably good that my arms are too weak at the moment to lift a hammer, because if I could I'd smash the shit out of the universe. This is not fair!
farnam: (Default)
But right now I've got this nasty fluy bug back again, 3rd time since Christmas. I'm tired of it. It leaves me exhausted. Every time I think I'm over it totally it leaves me for a week or two , and then whammo, comes back with a bang ... same bug, all the exact same yuckiness each time. I'm going to phone the doctor at 2 pm and see if I can get an appointment for thisafternoon. Time to get over my dislike of antibiotics, because this is way beyond funny. Today is an important day in work, and here I am, sluggishly grading the papers at home - papers that should have been marked weeks ago, but I didn't have the energy to get through the stack.

The conference was great, life is great, so much good to write about. No energy to do the big long posts I want to do about whats fantastic, so I just briefly moan. *frustrated sigh*
farnam: (Default)
I read your posts. I do not reply, at the moment, because my f***ing hands don't work (just a stupid litttle thing, don't ask) and typing is painfully slow. But I'm still reading, not ignoring anyone. Will be more talkative again soon.

its hot

Jul. 19th, 2006 03:17 pm
farnam: (Default)
I'm working so hard here in my hot stuffy office, can't you see? Really must get busy.

I'm just back from getting my x-rays carried out and am in a generally disgrunteled mood. I'm just sick of being sick, and tests with bad results.

When I'm presidnet of the world I think I'll make it maditory that any time the temperature tops 26 degrees that all offices close and free transport is provided to the beach for all workers.
Roll on the revolution!
farnam: (Default)
Another wet grey Monday morning. Did somebody forget to explain to the weather what summertime means?

Well, I spoke to the boss thismorning about being under the weather, in every sense and explained why I've been arriving late and going early so much. I'm glad I did. Felt like a whinging schoolkid when I was doing it 'but teacher, I can't do my homework 'cause I'm weely weely sick'
but in fiarness he didn't have a problem with it and at least now he knows this isn't the normal me.

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