Dear readers,
Here's a slightly different article for you to get
your reading glasses tuned into this week and something a little bit away from
our usual discussions of all things newsical, viewsical and musical - don't
worry we'll get back to our usual praisee-ing of obscure albums nobody listens
to anymore and harrumphing at modern music and the Spice Girls next week.
However this week is a special week - M.E. Awareness Week - which has become
increasingly useful to sufferers like myself to get out message across without
being branded moaners/whingers/scroungers. Yes, I know, we're a music site and
don't usually cover this sort of thing and I've gone without saying anything
for the eight years this site has been running (though I've thought about saying
it every year), but it struck me reading all the posts last year that we
sufferers tended to be preaching to the converted about our illnesses to some
extent - what we really want is the general public to learn about them. And
while I know there's nothing general about my wonderful, talented, educated,
cultured readers who have the fine taste to appreciate the same music as me, I
leave this article here in the hope that those of you who've read everything
else and still want might learn something and help us stem back the tide of
ignorance and arrogance against us. After all, I've always used Alan's Album
Archives as a platform for addressing stupidity, ignorance, injustice and
hatred, I just happen to speaking it through firsthand experience rather than
song form this time.
If you haven't heard of the illness then don't
worry, most people haven't - I'm not sure I had except in vaguely prejudiced
terms before I became diagnosed with it which soon turned out to be wrong. This
is not a well known and hideously misunderstood illness, even though it's one
of the most common ones around (affecting some 200,000 people in Britain alone
and even then less per population than places like America). No one quite knows
what causes it, although as a virus tends to send most people's symptoms off,
mine included, it seems likely that a virus is involved somewhere - there's
other evidence out there that it's a genetic malfunction, that your body is
effectively over-repairing itself after illness or that it's a combination of
these and/or bacteria, hormones or too much fluoride (or something that hasn't
been found yet. Outbreaks tend to occur in rushes and while its not common in
families there are cases of next generations getting the same symptoms (and
quite often skipping a generation too. Which is just great - its not just us
doomed to a fate worse than death and possibly resulting in said death we might
end up inadvertently passing it on to our nearest and dearest too (apologies
grandchildren of my future, but at least this site has provided you with the
right music to listen to while you're stuck in bed like Grandad/Grandpa/Old
Fogey Alan). While there is no one test that can prove the condition and it
overlaps with many things, there are various things that can help rule it out -
and specialists who see hundreds of patients a year but only tend to give out a
few dozen diagnosis if that, plus a few 'rules' that have to be followed (most
of the main symptoms over the course of more than six months). Remember,
there's no test for multiple sclerosis either, but no one in their right mind
would deny that that illness exists (apart from a few Daily Mail readers
perhaps). Oh and there does seem to be 'tests' that can be carried out to
half-prove the illness - but typically for our luck can only be found when
you're dead (it's something to do with the cerebrospinal - now there's a word for your next game of
scrabble - fluids being cut and revealing something wrong apparently, which as
generous as I try to be to medical science donating my head to be lopped off is
perhaps a step too far even for me).
Inevitably as a result of this uncertainty this
illness is also woefully underfunded (male pattern baldness gets more money
spent on it in this country!) and frequently dismissed, despite the fact that
it dates back to the Victorian era (a debate for another time - was Charles
Darwin the first patient to suffer from it? Was Florence Nightingale another
early sufferer?) and has been listed as a serious debilitating physical
condition by the World Health Organisation since 1969. That should surely be
end of story shouldn't it? I don't know of any other illness where people say
'The WHO, made up of the world's leading experts on medicine, which has been
established for decades and undergoes the most intense scrutiny - yeah they
must be making this up for the hell of it!' There is also far more overwhelming
physical evidence for the illness than other conditions that also used to be
ignored, from Multiple Sclerosis to Aids (one article I once read said that
there is more evidence for the existence of m.e. than asthma) and with not just
a similar but according to a majority specialists a worse standard of living
than many major illness (the restrictions are equivalent to late-stage aids,
for instance). Not many doctors agree on anything - least of all a convincing
name for it (it really is the illness of a thousand names - variously M.E. or Myalgic Encephalomyelitis, Chronic Fatigue
Syndrome or most recently SEIDS or Systematic Exertion
Intolerance Disease - which still isn't what I'd prefer to call it despite being voted in as
'our' chosen name, but the fact that it spells DIES backwards is rather apt, so
hey ho. Many sufferers have been obsessed recently about what name to give this
illness which doesn't insult us or belittle us - though personally I'm more
angry about getting a cure than what the illness I'm waiting to cure should be
named). Things are changing, very very slowly - President Obama has been a big
help with funding and only the US and UK
are still in the truly primitive stages of treating this disease, which is
better treated round most of the world - but at this rate I really will be long
gone by the time any concrete progress gets made.
The other
trouble is that the illness comes at different rates and different exhaustion
levels, so some people do 'seem' to carry out normal lives, fooling people into
thinking that the illness is always minor and possible to manage without too
many alterations; sadly that's a false picture, most sufferers have it bad and they're
the ones you don't get to see because they're asleep (or more likely trying to
sleep) safely at home, worrying about the one time they have to be out the
house the following week and whether they'll cope. There are in fact a lot of
people far worse off than me - permanently bed-bound, unable to wash themselves
unable to eat, unable to talk. Remember when you had that really bad cold and
nobody saw you for days? Remember how you behaved when you finally had the
energy to get out of bed and felt on the mend? 'I'm fine' you said, 'what did I
miss?' It's a bit like that for us - nobody really sees the bad side unless
you're unlucky enough to be living with someone clobbered by this.
Occasionally
people assume that this illness is just a phase and will get better and reckon
that being bed bound is the worst this illness can do. Nope! While it's only a
small number of patients who get it this badly, me/cfs/SEIDS can and will kill
(don't believe me? There's a site here that lists lots of the known cases,
though the 'real' list of deaths unreported is surely much much longer: http://www.ncf-net.org/memorial.htm)
While the m.e. tends to go hand in hand with some other nasty problem (like
heart failure or organ collapse) and isn't always recorded on the medical
certificate, thousands of patients would not have died without m.e. as one of
their symptoms, weakening the body so the other stuff doesn't work. Although
I am rather staggered to learn
that I am currently in the 'moderate' category', which given that I'm nearly
bed bound and spend most of my time struggling - to wake up, for balance, to
find a position that doesn't hurt, to get through everyday things I used to
take for granted and quite often for a brain that works - I can understand why
that can happen. This pain is worse than I ever imagined pain could be and even
at my levels my body feels like it's ready to give up the ghost any time. And
it's impossible to put into words how helpless you feel with all the 'crashes'
that leave me bedbound, unable to think, unable to move, unable to cope, unsure
when if ever you will be able to go about your 'just about coping' existence',
worried that it could be your turn to go next. And still all you hear is 'Yeah
that's right, just a bit of tiredness and a few aches and pains from getting
older - nothing to worry about!'
Most of
the sites you see say that this illness like getting a bad case of the flu just
without the sneezing, but in my previous life I never had an illness this bad
or this terrifyingly intense, day in day out. The condition
is hard to describe and changes a lot (by the minute sometimes) but I've always
likened it to being run over, every single blooming morning, by something (sometimes
its 'only' a bicycle, sometimes its a steamroller, most days its a double
decker bus). Your body isn't just throbbing it aches all over, in every muscle.
You don't just feel as if you've had a bit of a rough night's sleep - you hate
it so much you vow never to fall asleep again. You don't just take a few
minutes to wake up and come to, you awake feeling completely disorientated and
stay that way for hours. It's thought that, somewhere in all this, the body is
tied up in a perpetual 'fight or flight' syndrome where the body is always at
the limit and can easily be pushed past it - but there's also overwhelming
evidence that it is both a genetic and a virus-driven condition. While debate
exists about whether the pain caused the fatigue or the fatigue caused the
tiredness, one thing's for sure: your body cannot repair and heal itself so
anything you've done during the last few days you'll pay for. Very often I'll
end up with aching arm muscles several days after lifting and carrying
something that I've forgotten all about (sometimes I can't even work out what
it was that set me off), or will wake up screaming in agony as a muscle in my
legs gives way in my sleep and wakes me up - even though my heavy walking day
was so long ago I've forgotten all about it and been in bed ever since.
Muscles
don't just hurt, they spasm in my sleep because they can't repair themselves. I
don't just get tired, I stay exhausted - and that's on my better days. I don't just feel it a bit the next day if I
do something major - I feel every little muscle action, every little ache and
pain to an intensity I previously thought imaginable (and as those of you
who've read my reviews as seen through the eyes of the cow or the talking heads
in the cover of various Pink Floyd albums or our April Fool's Day columns will
know, I don't lack for imagination, more an ability to reign it in). I don't
just sleep badly, I barely sleep at all and when I wake I can't believe the
hour can possibly be right because it either seems like a million years since I
was last awake and vaguely conscious - or that I've slept a grand total of
about ten minutes (it's not an exaggeration to say I haven't had what most
people would consider a proper night's sleep in eight years, even though
sometimes I can sleep for 12-14 hours). I don't just get short of breath, I
have a permanent tight chest that feels as if my heart is about to give way. I
don't just get slight tummy ache anymore, I get chronic indigestion and have
ended up loathing the words IBS (Irritable Bowel Syndrome) almost as much as
the initials IDS (our failed welfare secretary in the UK, Ian Duncan Smith). I
don't just get hungry, I spend most of my time starving, my body so desperate
to replace the missing energy it needs that it demands more carbohydrates all
the time. My body clock doesn't work, leaving me unable to cope with anything
in the mornings and I'm at my brightest a good three years after most civilised
people are in bed (which of course makes you want to stay up later so you can
put off feeling so rough again). I don't just have occasional headaches, I have
pounding migraines that can blur my vision and leave me unable to move. I don't
just have a woolly head that can't think straight, I have a permanent cardigan
over my bonce, twenty four hours a day, seven days a week. My body can shake
and shiver because its passed it's limits and last for so long it's scary. And
it's not just one day that's a problem - this is an illness that's
accumulative, with flare-ups that can last days, weeks, months, years - even
decades (I've never recovered from a car ride I took four years ago - and
probably never will). This is an illness that leaves you drained and with no shops
stocking the right make of batteries. Worst of all this can be a very lonely
illness - the world is going to sleep when you're waking up, the shops are
shut, friends are out and only your fellow sufferers on twitter seem to be
awake (a quick shout out to the wonderful friends I've made there - you know
who you are!) And yet after fighting through all this, fighting to do what I
can with the only medium I know how and the only thing I can do at all times of
the night in my pyjamas if I have to, in between bad spells(writing). The
papers will tell you that welfare recipients are living the life of Riley, us
especially. But this isn't living - I'm not sure this is even surviving most
days.
What's
more, whilst other illnesses get the aid they deserve and lots of help and
support there's nothing much that can be done for us sufferers - some people
find certain pills help and there's medical evidence out there that drugs used
to treat other conditions work for us too, but nobody has yet put the money in
to find out (and not without lack of trying either). Some of my friends swear
by certain painkillers, others use steroids (which have the side effect of
leaving you even more like a zombie - and trust me when the zombie apocalypse
comes I know I'm safe as I'll be instantly accepted as one of theirs even
without taking anything extra). While the baldies out there get money thrown at
them to help get them a head of hair they looked better without anyway, I have
to get by on paracetamol and occasional life-saving massages (none of the
me/cfs sites seem to mention back pain but that's right up there in my 'cfs
desert island risks'), the only things I've found that work for me.
Oh and
pacing myself so that I only do a set amount of work every day no matter how
great or ghastly I'm feeling, the only thing that works - well up to a point
(planning is a sufferer's best friend, but you'd be amazed at how many people
decide to re-write the plan and expect you to do something without warning
anyway). Easy you might be thinking - no doubt the pre-illness me would be
thinking it too - make sure you have a 'day off' after you need to do something
and Bob Weir of the Grateful Dead's your uncle. But the world doesn't work like
that. I can't tell you how many home or friend emergencies have happened when I
simply haven't the strength to cope - but had to find it anyway. I can't tell
you how many Government letters and forms have come through my door at the
worst possible moment, with demands that the thirty pages (which don't cater
the worst aspects of my condition at all) be filled in now or sooner or you don't
get any money at all with a deadline two days after you receive them. While the
job centre staff I am with now couldn't be nicer, I can't tell you how many
problems I used to have back where I used to be - how many ignorant, pig-headed
people made me do things I couldn't do at times I couldn't do them or told me
that I'd been ill for long enough already, like this illness has a best before
date (before you ask, it can get better and there is hope - but for a majority
of sufferers it will never go away). While my GP and my old specialist have been
wonderful and I can't praise them enough
(I'm one of the lucky ones here - though even then I went through my share of
nasty ignorant dismissive doctors before I got here), they deserves better than
to have me filling his time up asking for the same blinking medical letters
every year about an illness that's unlikely to change much. I can't tell you how many appointments I was
given at faraway stretched of the country even the healthy couldn't normally
get to, only to be told that there was nothing wrong with me - which is always
nice to think over when you're lying in bed for a week precisely because of
that appointment which wasted your time as well as theirs.
And
for my regular readers: as you may have noticed I run a website. This website. The solution looks simple
doesn't it? Give up writing and lie in bed all day going 'ow'. I can hear the
sceptics from hear reckoning that because I can write this many words a week I
must be alright really - even a couple of you have been kind enough to get in
touch and say they're glad I must be feeling better because I'm writing more.
But actually, especially recently, the worse I am the harder I write. I've been
told not to do that many a time, been warned that I was doing too much by my
friendlier medical people (whilst at the same time being told I wasn't doing
enough at the jobcentre) and I've tried. I really have tried. I've slowed down.
I've held back. I've thought more and written less, I've done less of
everything. I once barely wrote anything for a whole year - and it was the most
miserable year of my life. But oddly enough writing isn't that much of a
strain, providing I have the time and I'm not at my absolute worst (in the
sense that whatever I did, including lying in bed, is a strain). And,
you see, on the days I get it right, writing these reviews can transport me out
of the tiny prison of my present existence and offers a chance for most of my
sub-conscious to think about something else other than 'I only got four hours
sleep last night and need to be ready for something tomorrow - how do I cope on
that?' and 'ow ow ow' (pronounced OW OW OW!!!) I actively took the decision a
couple of years ago to either slow down, stop altogether or speed up. It was a
hard decision to make - and I'm not altogether sure it was the right one - but
I needed a 'future' as the illness had taken away so much of my present and
it's the writing that gives me one last thing to get up for. Even more surprisingly, to date the only part
of my brain that isn't fogbound seems to be the parts of my memory related to
my favourite musicians (I can't tell you what I had for breakfast, but I can
tell you what the B-side of an obscure Jefferson Airplane single from 1966 was
without looking it up) - I spent a long time wondering if it was a part of my
brain that had been saved by future sci-fi me during a trip back in time to fix
my broken body that went wrong, but it seems more likely that all that stuff
just went in too deep for it to be removed (listening to music regularly means
the memory gets a refresher course regularly whereas I don't need to remember
other anywhere near as much). Given that there's no more important subject in
the world than 60s and 70s music, that's what you got on this website - writing
about being poorly, though done so well and brilliantly by so many other
bloggers, is actually quite boring for me and depressing when it's not good
news.
The trouble is too I don't like talking about my
illness much - if I was to complain whenever I was in pain or suffering from a
lack of sleep then I might never stop. I probably don't complain as much as I
should so others forget how much pain I'm in, but complaining costs energy too and
I'd rather use that energy fighting this thing and coping with the consequences
than spend another year in bed staring at the ceiling and wondering which AAA
album cover would work best as a mural (it's between The Hollies' 'Evolution'
and the inner sleeve of The Moody Blues' 'To Our Children's Children's
Children' as you happen to ask. What do you mean you didn't?!) The fact is too
that there are some truly wonderful me/cfs bloggers out there who can tell you
so much more than I could (curiously enough I've often noticed how 'alive' and
vibrant the writers of most of the me online community are, miraculous for
people who are half-dead); for an illness that isolates you as much as this one
does there isn't half a solidarity out there amongst the bloggers who are
heroes all for having the courage to do this every year. I'm not quite sure who
I'm telling my side of the story too either - the people who clicked on this
link expecting to read about an obscure psychedelic band named The Chronic
Fatiguers perhaps - but the story needs to be told by somebody and particularly
to people who wouldn't otherwise have heard about it (and I couldn't sit there
hypocritically typing 'people need to be told!' for another year now that my website
has been getting more hits). I'm sorry that person had to be you and I'm
grateful as always, dear reader, for your patience.
If I could lean on it just a little longer though,
there's one particular problem with the me/cfs online coverage that annoys the
hell out of me every time I read it and it's a controversial one so I've
largely left it to here: the thought that the illness must be a 'psychological'
one, despite flying in the face of all the medical evidence (and no its not 'if
it was real someone would have found it by now' as soke have argued - there
have been several tests demonstrating abnormalities in brain patterns, red
blood cells and an over-reaction of the immune system when provoked, but every
time a promising paper comes up and the community gets excited the Government
block it and even on occasion try to alter the findings).Unlike so many it
seems I have no issues with mental illnesses, which are as brutal and limiting
as any physical ones and just as unavoidable. I do know sufferers who have both
too (if anything was going to cause long-term depression its being ill and
nobody believing you after all). However I object to people who assume that this
isn't a physical illness, when all the evidence says that it is. There's even a
monster masquerading as a psychologist (even though he's barred from practising
and doesn't have the right qualifications) who makes it his life's work
claiming that me/cfs is 'all in the mind'. The psychiatrists of course know
that they're on to a losing cause as more and more tests with this illness are
made so have been getting increasingly desperate in recent years - to anyone in
the know their cause is clearly failing, although it's still not failing fast
enough for general public perception. From the outside that argument may look
vaguely plausible and understandably leads to the people who don't 'get' mental
illness to condemn you, but let me tell you from the inside it's nonsense:
there's nothing more insulting than being told you're 'lazy' when you've never
fought so hard in your life to accomplish anything. The fact that this website
is about to celebrate its 1000th post - with two-thirds of them some seven
thousand words long at the very least - for a grand total of £17.52 (the
collective amount of money made from this website - it's not about the money,
it's about the music) should show how wrong that statement is and I'm far from
the only cfs/me blogger out there with that story to tell. The trouble is,
though, that people 'believe' doctors to the exclusion of all else - even when
the doctors admit they know nothing themselves; the fact that thousands of us
report the same conditions, come up with the same results in tests and the fact
that it goes against everything in your character suddenly counts for nothing;
of all the problems that are the most damaging in this condition it's the
mistaken unfounded betrayal of friends and family that's the worst thing to
bear, when they assume that the medical world covering up for being clueless
must be right and you're all wrong, despite the evidence, despite the tests,
despite the seriousness of the condition of all the sufferers.
The only similarity between depression and me/cfs
is that sufferers are to some extent trapped in bed. The differences though are
colossal; if you want to know whether you have 'depression' or 'me/cfs' or
somebody you know has then surely the biggest difference you only need to ask
them what they would do if they had the strength. It seems likely that the patient
with depression would answer 'I don't know' or 'it's not something I've thought
of' or 'I can't even possibly think about that till I'm better'. The me/cfs
patient will give you a list ten foot long, reminisce for hours about all the
things they used to do which they long to do now (and do do now, occasionally,
when their bodies let them ,whatever price they end up paying for it). They'll
even show you proudly some slight effort towards that over life that might have
been: they'll have gone back to studying (they may have given up after an hour
after being in too much pain, but they'll have tried), they'll have drawn up a
sheet of jobs that need dong round the house when they're well enough, they'll
have created blogs like this one (there are many many me/cfs blogs, far higher
a quota than with most illnesses) or if they're capable they'll be doing
voluntary work. The only real similarity between the two illnesses is that the
sufferer is trapped - but there's world of difference between the boxes they're
trapped in. Depression is a black airless box with no windows and a locked door
that can only be opened when the prisoner has just the right amount of force to
break the lock, if ever they get that far. Chronic fatigue suffers are trapped
in a glass box that offers perfect views of the outside world - a world in
which the sufferer can no longer participate and is reminded of the fact at
every turn. Every so often you'll see someone doing something you really wanted
to do, or making the most of an idea you once had or read about someone living
the life you thought was going to be yours one day. Fresh air from outside
continual passes through your glass box, reminding you that there's an outside
world out there for when you're string enough to get back to it. Sometimes it's
a hopeful breeze that calls you to the outside and sometimes it's a tornado,
smashing everything you've built up except the box itself. You can't help but
look out or see people looking in with scorn on their faces because your box is
glass - it's magnified everything that's going on outside (ordinary life is
always far less interesting to the people who are living it) and you can't help
but see out and see what the world is getting up to without you. The depression
sufferer does not care what goes on outside the box (on their bad days at
least) because the box is overwhelmingly dark- the me/cfs box is overwhelmingly
full of sunlight that you're desperate to get out and feel, but can't. Both of
you are prisoners and both of you can't help it, but both of you are prisoners
of different cruel monsters and at the mercy of very different beasts.
The other misguided notion is that exercising
makes it all better. While some sufferers who are slowly gaining improvements
will indeed find it beneficial, it's not a cure for me/cfs and does more harm
than good in many cases. Effort takes effort. Effort is what you don't have -
and while you can occasionally buy a 'loan' from the bank of energy if you've
stored up enough credits (people who don't know about it might enjoy the 'spoon
theory', an excellent visual guide to this problem: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)
this energy bank has worse interest rates than Wonga. You don't just have to
rest for a little bit after doing something - you have to rest a lot for a long
time. What's more, exercise hurts, it's your body's way of telling you that
you're doing something wrong - and sufferers become very in tune with their
bodies telling them when something is wrong. The cost you see is just too high
- and while being a permanent couch potato is probably worse for you than
moving a little bit, it's so easy to go too far. Not least because you don't
know that you've gone too far - you might not know until finding yourself
unable to get out of bed three days later. People who exercise regularly will
of course get tired and a bit achey, but it's a 'good' ache from what I
remember from the dim and distant past - a slight pain that tells you you've
been working out hard enough to reach your limits and your limits are pretty
high. Me/cfs sufferers are already way way waaaaaaay past their limits before
they even start - and the ache you get isn't a 'good' ache but an 'oh God I
can't move' ache - the ache we've come to dread. To be honest having to
suddenly rush to the loo several times a day without much warning means
sufferers will be getting more exercise than most anyway, even if it doesn't
seem that way.
So, our regular readers might be thinking, that's
all nice and well and I'll remember to be more helpful when I hear of someone
with the illness - but I came here to read about obscure non-charting solo
albums by members of sixties bands nobody remembers - how the hell did I end up
here and what does all this rambling mean for this site? The trouble is, I
don't know. It could all go away tomorrow (although after eight years at this
level of pain that seems unlikely - it generally takes a long to pull yourself
out of the hole as it does to get in it, so that's another eight years even if
I started getting better tomorrow, which I doubt somehow). It could go on for
years or the rest of my life, gradually taking away even the part of my body
that can just about hold myself up to type and the part of my brain that can
still think about music I haven't heard in years relatively clearly even though
I can't remember what I had for breakfast. It could, I fear, kill me. I fear I might not be able to run this site
for too much longer. I've been getting weaker, slower and struggling with the
repercussions more and more (generally being interrupted to do other stuff
unexpectedly on top of heavy writing days). And yet I've been saying that since
the beginning and with only two years or so to go before all 500 key AAA albums
are reviewed, I know it will take a lot to prevent me from reaching the very
end of this project, whatever this illness throws at me. It may be notoriously
stubborn, but I am stubborn too. The downside is I have to do this relatively quickly or
I really fear it won't be done - the illness will have claimed me totally and
I'll either be unable to have the strength to do any of it or dead. I've had
less time to re-write these articles (the bit I like doing least of all anyway)
and I've noticed more mistakes are slowly creeping in - sorry. This is not a
choice I recommend for any other sufferer - pacing, slowness, rests and no
stress are the real things you need to help so please do as I say rather than
as I do - but if I slowed down I was at risk of not getting anything more done
at all and after eight years there's no chance I'm leaving this project
unfinished. Neil Young once posed the question 'is it better to burn out than
to fade away?' The answer is different for everybody, but for me it's 'burn' -
I've been fading away for too long and I have to achieve something, the illness
has taken everything else away from me but it's not having this (Janis Joplin and
Dire Straits are all ready to go for next week in fact). I often joke that my
ghost will still be posting updates until it's over. However do be warned - if I go quiet it's
because I can't, not because I won't. May the Gods of obscure prog rock concept
albums from 1969 smile down and keep it safe from trolls, hacks and David
Cameron.
Erm,
anyway, back to subject - though I must confess its hard using the same medium
to talk so much about my illness that writing has been is good helping me
repel. By
now you might be feeling a little concerned on our behalf if I've written this
right - you'll almost certainly be feeling angry, if only at me for making you
read so much. So what can you do with that anger/outrage/new found wisdom? Well
the trouble is we can do so little for ourselves. It's one thing writing a blog
- it's another actually having your voice heard by someone who can do something
about it. We
can't go out and campaign ourselves -
because most of us are bed-ridden. We can't raise a lot of money - because most
of us are struggling to make ends meet on benefits that only a few of us were
lucky to get in the first place anyway. We can't even really be seen - because
if you do see one of us around you can bet your highly prized Beatles wig collection
you're seeing one of us on a moderate-to-good day or we wouldn't be out the
house at all. (A place where that old bugbear question of the me/cfs patient
'How are you?' tends to be answered with 'I'm alright', no matter how many
double-decker busses parked on top of steamrollers and sat on by Brian Blessed
happen to be on top of you at that very minute; it's just what you're trained
to say and most people can't follow or care for the explanation anyway). In
short, we can't get on our high horse en masse - because the horse is too high
to sit on. We need you - yes you! - not to rally on our behalf necessarily, not
even to raise money (although there are several excellent me/cfs charities that
would be grateful for it) but we desperately we need you to 'get' it. And to
keep this all in the back of your head the next time you write some sniffy
article by someone who doesn't 'get' it. And to tell your friends and family
off when they 'don't get 'it'. And to keep on telling them until they do get
it. Power to the people, as John Lennon once said - we can't change the minds
of those in power if we can't change our own first. We just want to be heard
and understood and know that you're reading the 'truth' from someone who has
the illness firsthand rather than from an ill-informed reporter who thinks the
illness just means sleeping a bit more often or from biased and crooked medical
practitioner (which is all the fault of our old bugbear Margaret Thatcher and
her pal Ronald Reagan - afraid that early tests suggested a link between the
illness and pollution they set off on a smear campaign to claim it was a
made-up disease in order to not have to pay people compensation - there are
still records locked up under the official secrets acts for another 90-odd
years, far longer than any other health documents and no doubt that will be
extended again next century; luckily there have been 'leaked' copies). It's an
unfair fight, dear readers, that none of us were ever supposed to win.
But we
are. Little bit by little bit. Every year more of the word spreads. Every year there's
a new test with promising results, even if those results get swept under the
carpet. And it's not all bad - occasionally there'll be an me/cfs piece on
television that actually bothers to be balanced and - occasionally - very much
on our side after years of stupid comments back in the 1980s and 1990s (Matthew
Wright's Wright Stuff for instance is particularly good in this regard and
deserves more kudos from our community whenever they're brave enough to tackle
this issue). Each time of year that me/cfs week rolls round I'm super impressed
how many people are out there raising money by doing the activities we could
never do in a month of Lazy Sunday Afternoons. Every few months someone important,
someone the papers can't ridicule too much will come out and say 'I have me/cfs
and I hate the way it's treated' at the risk of their careers - take a bow
Cher, Michael Crawford, author Laura Hillenbrand, Britain's former number one
squash player Peter Marshall (whose autobiography 'Shattered' is still the best
single book on the illness I've read) and our very own Stuart Murdoch of Belle
and Sebastian (whose recent CD includes 'Nobody's Empire', a gorgeous song
about his own experiences) who've had the guts to speak out about their
experiences. They tried to tell us this illness didn't exist and they even won
a few battles early on - after all, this is hardly a fair fight between people
who have all the power and those who can barely get out of bed. But we can
still win. We are winning. We will win. Those of you still fighting - keep in
the fight because we will be heard! Those of you not in the fight but who know
people who are - help them fight! Those of you who haven't got a clue what I'm
talking about but have been swept up in the fervour anyway - fight for us
anyway, we need you! This Dickensian attack on the suffering has gone on for
far too long, but it won't last forever. One day the world will be a fairer
place, if not for 'us' then our children or grandchildren might have a cure or
at least a better and fairer understanding. One day the world will stop
offering us made-up solutions they just know will help, honest, long enough to
listen to what us patients are actually saying. One day the world will see the
truth and it won't be because of a major change of policy but because of a
major change in people's minds. The time for that change is - well actually it
was a long time ago, but better late than never; that change needs to be now. That
was a party political broadcast on behalf of Alan's Album Archives and we will
shortly be returning to normal service.
But
before I go, one last thing to reward the music fans who've struggled on this
far, a quick 'top ten' of suitable AAA chronic fatigue-inspired/inspiring songs
and where to find them (an expanded version of our very first website post in
fact!):
1) Belle and Sebastian "Nobody's Empire" (from the
album 'Girls In Peacetime Just Want To Dance' 2015) 'I clung to the bed and
I clung to the past, I clung to the welcome darkness...intellect ambition fell
away and they locked me up for my own good, we are out of practice, we are out
of sight, on the edge of nobody's empire'
2) Graham Nash "Another Sleep Song" (from the album
'Wild Tales' 1974) 'All I need is someone
to awaken me, much of me has gone to sleep and I'm afraid to wake up...There is
no time to waste another day because we watch them fly away!'
3) The Rolling Stones "Rocks Off" (from the album
'Exile On Main Street' 1972) 'I want to shout but I can hardly speak...heading
for the overload, down some splattered on the dusty road, kick me like you
kicked before, I can't even feel the pain no more...How come I only get my
rocks off when I'm sleeping? How come I only get my rocks off when I'm
dreaming?!?'
4) The Beach Boys "I Went To Sleep" (from the album
'Friends' 1968) 'Ten thirty I turned my radio on, some group was singing a
musical song, it wasn't too long - and I went to sleep!'
5) The Beatles "I'm So Tired" (from 'The White
Album' 1968) 'I'm so tired I haven't slept a wink, I'm so tired my mind is on the
blink...You'd say I'm putting you on, but it's no jokel, it's dong me harm, you
know I can't sleep, can't stop my brain - I'm going insane! - I'd give you
everything I've got for a little piece of mind!'
6) The Kinks "Sleepwalker" (from 'Sleepwalker' 1977)
'Everybody's got
problems, buddy, I got mine, when midnight comes around I start to lose my
mind, when the sun puts out it's light I join the creatures of the night, oh
yeah!'
7) The Small Faces "Every Little Bit Hurts"
(unreleased live show 1968, found on various compilations) 'Every little bit hurts,
every night I cry, every night I sigh, every night I wonder why you treat me so
cold - won't let me go...I can't keep on giving my life away!'
8) The Who "Sh-aching All Over" (from the album
'Live At Leeds') 'Quivers down the backbone, chills down the thigh bone,
tremors in the back bone - aching all over!'
9) Neil Young "Brain-fog Of Loneliness" (unreleased
1969, found on 'Anthology' 2009) 'Bad fog of loneliness put a cloud on my
single-mindedness...So long woman I am gone, so much pain to go through!'
10) Pink Floyd "Uncomfortably Numb" (from the album
'The Wall' 1980) 'You are only coming through in waves, your lips move but I
can't hear what you're saying...I can't explain, you would not understand, this
is not how I am!'
and a special mention for The Byrds' "Fido" (from
the album 'The Ballad Of Easy Rider' 1969), which is surely a mis-spelling for
our sister condition fibromyalgia 'Fibro (made me) stay up late, would not go
home, asked him to leave, felt a pain in every bone, but I'm still lonesome,
wide awake, staying up late, wishing I was not! You were on the outside talking
to some chick, I was on the inside feeling mighty sick, sleep is what I wanted,
but you know what I got, wide awake, staying up late, wishing I was not!'
