Crusader
James Eavis
posts : 91
| well, my plans to go and see lord of the rings today have been dashed, as per usual, by me feeling like shit. if i wasn't used to it, it would be annoying; that almost any plan made involving me and happening at a fixed time, nearly always fails due to me not being able to make it at that time. it would ruin any semblance of control i have over my online life if i let it, but you have to draw the proverbial line in the sand somewhere, thats where i draw mine.
i left the room in oxford where i was staying for my university study (which had been forceably ended in march 2000), in june 2000, and moved home to live with my mother. so now i'm a year and 6 months on, and i'm not better. not sure who will read this site, but as i've mentioned in my column on quake.ie in the past, i was diagnosed with chronic fatigue syndrome (cfs) at the end of 2000 (i usually confuse being diagnosed with coming home from uni thinking that was what was up). so its a year since i was officially diagnosed. a year in which i've managed to keep my "job", running this clan and its many branches. a year in which i've kept in touch with my friends online, and a few offline. a year in which i've made new friends online, who have the same condition or a related one.
a year.
three hundred and sixty five days (i think, i can't even remember last week let alone february).
eight thousand, seven hundred and sixty hours.
eight thousand, seven hundred and sixty hours, that a doctor or scientist somewhere could have found a cure in. eight thousand, seven hundred and sixty hours, that people have lived. have died in. been born in. got high in. worked through. loved through. cried through. laughed through.
its a long long time, when you're away from the outside world. if it wasn't for irc, tv, news sites, the web in general; i'd be completely secluded, hermetic. i'm fairly sure that would drive me mad. hell, there's no saying i'm not already, even i've wondered in the past, and as long as there's no definitive test for cfs, it could easily all be just in my head. some of the leading theories point to a malfunctioning hypothalamus, so it could be all in my head literally as well as figureatively. its like thinking that being depressed is all in my head, if i act like its not there, it'll only get worse. self realisation time. and its not like i've got some weird scar to look to, or some piece of paper, that is solid evidence i could use to convince myself this is real, this is really happening, you're not dreaming, you're not going to wake up any minute and laugh about it. if i wanted, i could spend every minute convincing myself that in the next minute i'd be fine, that from then on would be forever. futile, but pleasing in its own way. more commonly known as delusional.
so, has all this time to "myself" lead to any big truths? no, not really. a little more appreciation for what "everyone" takes for granted, mobility, coherency, concentration, cause and effect in terms of pain. a little more understanding of what its like to be in yet another minority group (from teenage to student to goth to cybergoth, quite a ride), a little more consideration, a little more respect. more understanding of the elementary processes we take for granted that keep us alive, awake, aware.
more time to read, more time to think, more time to plan. as anyone on selective serotonin reuptake inhibitors can tell you, thinking is one of the prime causes of depression. thankfully i've got pills for that. which i guess brings me back to cfs (aka m.e.), there's no pill for that. thats nearly always the first thing people ask, can it be cured. no, it can't, because "it" is a collective term for a set of symptoms. you can lessen some of the symptoms, but usually not all, frequently not most.
so, lets recap; nobody as yet has a definitive diagnosis, so there is no test for it. there's no cure, despite the myriad of snake oil remedies pushed at the sufferers.
so, the symptoms then, the signs that add up to this condition, that activate this label; that depends who you ask. there are at least 2 symptom sets, of which the uk is i think using the "oxford" set. i'm not going to list them, because i found them in 2 tries using google the first time round, and i've no need to duplicate that for now. in short, the most obvious is tiredness (ie. fatigue). you know how you feel, the morning after the night before, when you get up but don't wake up til midday? thats close. imagine you'd spent the day running a marathon, and then gone out on an allnight bender, and returned home at 6am in drunken oblivion, only to be out the front door by 8:30am to face the world. so, you get outside, and your legs don't work, your face wants to peel off and let the hurt out, you can remember that yesterday existed, if you try, and speaking more than pleasantries requires conscious effort to rouse your mind from the warm corner of your skull that it is trying to get to sleep in.
thats closer.
now, imagine that happening, but not running, and not drinking, but still getting up feeling the same.
thats close enough. thats a fairly bad day. on a good day, i feel "normal". the catch is, if i act "normal", do normal things, i can guarantee the next 2 to 3 days will be very bad. so, even when you feel good, you can't take advantage, because you might push too far past your limit. how many people know exactly where their limits are, how many words they can read, pictures they can watch, steps they can take, before they are exhausted. i'd guess not many, none in my experience. you get signs of when to slow down, you yawn, you feel tired, you take a rest or stop and sleep. sounds fine right? what about if you get those signs 2 hours after you've woken up, when all you've managed to accomplish is getting dressed and getting breakfast. some life. for some people with cfs, thats a good day.
but this isn't some attempt at obtaining sympathy, just venting a bit. the one thing with having a support community of fellow sufferers is that it can be hard to just vent how you are feeling, so many other people have the same problems if not more so. i'm not sure what the statistics are, i know i looked them up once, but as is the trend, i can't remember them. a quiet voice says 10% of the population, but i'd guess it must be less than that or it would be more publicised. although cancer gets 1 in 3 people and its only just starting to be publicised. on that note, i think i've a better perspective on cancer and other diseases of the kind. not quite the same kind of mortality awareness a fatal disease must bring, but perhaps more awareness of time. anyway, cfs doesn't kill, maybe in 0.1% of cases it can lead to death through i dunno, suicide perhaps, or being trapped in a body and not being able to sustain it without help, but thats not unique, there are people born that way. and yet, with all the many different crippling conditions in the world, its still normal to be fit and healthy. being abnormal, being an invalid, even just being slow to think, all things that today's society is trying to appreciate, trying not to wall off and forget about, not put hands over ears and ignore. but what about the people on the other side, thinking "i'll be well soon, i can be normal again". how many are right? how many people have their hope dashed every day of every week of every year, waiting for normality to assert itself? it must be thousands, perhaps tens or hundreds of thousands the world over.
and what about what i'll term "gamer culture". we all know how fast that is to label people, to brand them until they can prove themselves normal, or worthy, or intelligent, or polite, or whatever. anyone with an able upper body and working reactions and thought processes can participate in online communities, such as gaming. but how many of those people force themselves to achieve the image shown them every day on television, in papers, on posters; to be "normal", to be accepted. why should people push themselves, torture themselves, to be accepted. why should society be so inflexible, so rigid that it can't appreciate what people give of themselves, in whatever form they choose.
ah well, this has turned into an aimless minirant, not what i was aiming for at all. i only wanted to point out the things everyone take for granted, that can be taken away overnight, or over weeks or years. enjoy everything you've got, everyone you know and all they have to contribute. enjoy being able to walk, or to run, to get drunk, get high, whatever. just enjoy it. i don't profess to know what lies after death, whether there is an afterlife or just a void, but it would be a fool who waits their whole life to enjoy living a single day. life's too short.
ps. i'm currently the captain of the uk quake 3 urban terror team. i know, i can't believe it either. still, its an honour etc. etc. passes the time etc. 
(edited by mindphuck - column from hatstand.cx pasted)
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