The leftward and other blatherings of Span (now with Snaps!)

Saturday, May 12, 2007

Stop. Go. Stop.

I did not know, until just this minute, that today is International CFS Awareness Day. Thanks to tigtog at Larvatus Prodeo for blogging about it, otherwise no doubt I'd still be none the wiser.

CFS, aka Chronic Fatigue Syndrome, aka Myalgic Encephlaitis (sp?), aka "yuppie flue" or "tapanui flu," basically ruled my life for over three years and still plays a bit part in proceedings. I had it relatively mildly but the combination of the symptoms of the illness and the depression which resulted meant I couldn't work, often couldn't drive or socialise, and generally had to live like a particularly lazy cat (except for the washing in your own spit bit). At times I couldn't read, watch tv, talk on the telephone, or even clear the mail. Once when my car was towed from a clearway outside my house I couldn't pick it up from the tow yard for three days - I hadn't got out of bed, except for the essentials, since the previous week.

There are many theories about what causes CFS and I've been very interested in one which has recently come to light in Australia. The idea is that some sufferers may have had Glandular Fever before developing CFS (tick), and if they did not take sufficient time off to fully recover from the mononucleosis (tick) then they may end up with a particular brain injury. This damage has the effect of telling your immune system that you are sick when you are not, meaning that it often feels like your body is fighting something off even when you are perfectly well.

This fits not only my experience when I was really ill, but also some of the odd things that have happened to my health since, for example when the Greeks thought I had bird flu last year. My body tends to fever at the drop of a hat, and from my biological anthro papers I know that this is because it has detected infection and is raising the body temperature to kill it off. What the Greeks didn't know (and I didn't suspect at the time) was that because of my CFS history my body will give me a really high temperature just to kill a sinus infection that is already on its last legs anyway. I'm not about to die of something really nasty, my body is just being incredibly over efficient at cleaning house. These reactions are getting more mild as time goes by and maybe one day I'll get sick like a normal person does.

When I was first diagnosed there was a sense of relief at knowing what was wrong, but then horror when I realised that there is no pill you can take, no treatment you can undergo. It's a matter of trial and error, and above all waiting. I had a lot of advantages in my recovery which I credit with both the mildness and the relative shortness of my really bad patch. But it still hangs there in the background - if I overdo it again, as I did in my student days, then my body might force me to hibernate for a year or two.

There aren't a lot of NZ resources out there on CFS, but one excellent book is Understanding Chronic Fatigue Syndrome by Dr Alastair Jackson. I quickly discovered that a lot of the internet resources out there weren't necessarily accurate and some of the books were downright scary. One American tome told me I would start to lose my fingerprints - it's an incredibly creepy thought to imagine your fingertips slowly smoothing, your identity disappearing. It wasn't true, but it took me quite a while to find that out.

Now that I'm well again I can do most things other people can do. I'm never going to be able to get by on five hours sleep and little food, do no exercise and tax my mental and emotional state beyond belief, and fill every hour with work, study and politics, as I did before I got sick. That's not really a bad thing, but it's hard sometimes to slow down when you have so much you want to get done and feel like time is slipping away from you - especially after wasting three years doing Not Much, there is a drive to catch up that is hard to resist at times.

Today is a timely reminder to me that I'll get nothing done at all if I get sick again.


(Pic Via)

28 comments:

David S. said...

I had surgery 4 times between 2005 and mid 2006 to correct a damaged/defective sinus passage that had been making (or should I say keeping?) me sick through most of my life. In short, I think I know how you feel. I would get sick at the drop of a hat, take weeks to recover, which of course would make me even more susceptible to the next illness to come along. The worst bit was the few occasions where I was well enough to work close to my potencial. I'd get a nice job, do well at it, generally feel good about myself for a couple of weeks then BAM.. fall flat on my face and spend the next month in bed. I was pretty releived when I was told that there was a genuine reason for it and that one simple visit to the surgeon would fix it. Of course then one turned into four but who's counting?

Insolent Prick said...

CFS doesn't really exist. It's a label applied to primarily psychosomatic symptoms that are more to do with the patient being depressed or lazy or both. There's no real evidence that it's an actual medical condition. It's also no coincidence that it only exists in industrialised countries where there are welfare systems in place to cater for it.

Ghet said...

Yet again, IP demonstrates his expertise. Now he's a doctor. His diagnosis would explain why the condition hits top-flight athletes, for instance.

I don't normally feed trolls this pathetic and obvious, but after what I've been through in the last decade? Get a life.

weka said...

Get a life

Intelligence, a conscience, some halfway decent research skills and some compassion might help too ;-)


Speaking of lazy, it's a strange denigration to aim at people who have an illness that is beyond your ken, and would be better applied to the people who can't be bothered learning about CFS and how it is in the real world. If we want to generalise and attribute characteristics to an illness I'd say most of the people I've known who've had CFS are people who push themselves too hard and that is a large part of why they get ill in the first place.

The thing that pisses me off about IP's post isn't just that it's ignorant and offensive, but that it also reinforces myths about a seriously debilitating illness, and those myths actually damage people with CFS because if they are surrounded by people that believe they are not ill they become more isolated, get worse medical care, and push themselves harder when they should be resting.


Thanks for the post Span, it's always good to hear first person accounts of what is still such a socially invisible illness.

Insolent Prick said...

CFS does exist in the sense that it's the product of a molly-coddled society. It's simply another form of hypochondria.

The "treatment" for CFS includes such things as getting better sleep, exercising, establishing a few routines, and cognitive therapy. Sound familiar? Yes, it's the same treatment for depression.

Hypochondria does lead to shorter life-spans, and shorter quality of life, but only because the patient is constantly stressed about what illness they've got.

There are two legitimate treatments for hypochondria: you can either pander to it, and gently encourage people to work through the psychological issues that cause the hypochondria, or you can simply refuse to pander to it, provide no support to it, and force the patient to harden up.

Ms Klake said...

I can 100% relate to the "drive to catch up". Doing nothing much for an extended period of time is difficult for those who would like to be doing a lot more. I know that I always feel like I have to hurry up, get 'better', and catch up with the rest of the world.

ex-expat said...

It's always difficult having a medical condition for which the doctors don't seem to know a lot about and there's little public knowledge of. The internet is at times a godsend and a plague for finding information.

But good on you for being brave enough to post about it, you've persuaded me to do the same.

Span said...

IP, you seem to be specialising in trying to deny my experiences this week. Ah well, I know you like to annoy, so sorry I can't oblige you by giving you the catty response you are fishing for.

I certainly don't deny that depression was part of the equation for me. When I was first diagnosed the doctor told me it could be CFS or depression, or both, and so we would treat both. It was a smart idea, and eventually it worked, but I can tell the difference between when I am sick with CFS and when I am depressed now. They are quite different experiences for me, even when they are happening at the same time.

Thanks to the others who have commented (weka, I deleted one of yours as it was a double-up, I hope that was ok). The point about IP's attitude reinforcing myths is well made. To me it's no surprise at all that it is more commonly "womenly" illnesses that are frequently dismissed, particularly as hypochondria.

One of my most abiding memories of my years of hibernation was an encounter with Rodney Hide. I have had a number of negative experiences of Mr Hide, and he never seems to remember me from one to the other. Anyway, I was on a political stall at orientation and he asked me what I did. I told him I was an "invalid" and he looked me up and down and was quite shocked. He told me I looked well enough and I explained my illness. I told him that I would pay for my energy that day by spending the next three days in bed, and he accepted that graciously. As it turned out I think it was closer to a week, but anyway I could see that I had prompted him to think, which is a good thing.

Terence said...

Insolent Prick,

You're just pissed because Span recovered (mostly), while your own complicated web of afflictions (arrogance, insecurity, and stupidity) stubbornly refuses to go into remission.

Span, as a fellow sufferer of a chronic and debilitating illness (for which there aren't great medical solutions), I can empathise; and I just want to say yay for you getting better. Yay for me getting better too, for that matter. Yesterday my partner and I went for a bike ride through the evening light and autumn chill, and while it still hurt I, it was wonderful being able to do something that, two years ago, would have been absolutely out of the question. :)

zANavAShi said...

Thanks for sharing your story Span, even knowing the risks that there will always be insensitive ignorant people who will come forward to marginalise it as being some kind of hypochondria.

I have never had any kind of "official diagnosis" - in fact I wasn't aware that there even was one so I've never thought to seek one - but I have had experiences very similar to what you describe here (including the depressive ones) and I can SO relate to what you say about the consequences that follow times of having been very energetic and the feverish episodes - waking up in the morning soaked in saturated bedding.

It took me about a year to recover from my last full-time tertiary studies and my current studies I decided to do part-time so that I can better pace myself and not be struck by that burnt out fatigued feeling that used to bowl me over after end-of-term exams and result in me spending my entire school holiday break in bed sleeping to recover. For many many years now my holiday breaks have always consisted of sleeping and very little else.

The way I have been tackling my fatigue is with alternative therapies and mega-vitamin treatment (I spend more on anti-oxidants and herbal remedies each week that I do on food as a rule). The thing I have had the most noticeable and positive results from is working with a doctor who specialises in environmental medicine (and I have testimonies from other family members and friends who have had similar remarkable results).

Under his advise I got all my mercury fillings replaced (which took me about 5 years to complete on my measly budget) and we've been working our way through the layers of environmental poisons in my system - mercury, heavy metals, pesticides, etc etc - and I am feeling so much better than I could have imagined and nearly weaned entirely off my anti-depressants.

I am quite convinced that the build up of environmental poisons in the body are a very significant factor in so many of the mysterious and hard-to-diagnose afflictions such as chronic fatigue that are becoming more common in our times - there's only so much our immune system can do to cope with these things before it topples over the edge - and also many kinds of cancers.

I encourage anybody who is suffering conditions such as CFS, infertility, allergies, and emotional disorders such as depression, ADDH etc to track down a reputable practitioner in environmental medicine and get themselves tested for traces of common pollutants such as heavy metals and pesticide.

Once identified, the treatment is a very simple one based on homoeopathics, so I hope some of our members here might find my experiences here useful.

Cheers,
Zana

Insolent Prick said...

Here we go. QED. All the pinko liberals come up with these pseudo-diseases that the medical profession didn't acknowledge until the aforementioned pinkos began to dominate the health system.

If there's not a medical cause for it, then your only resort is voodoo science.

Span, you have to admit that the more people bitch and moan about how sick they're feeling, the less likely they're going to recover. I think it's excellent that you no longer suffer from hypochondria. But it won't help you to continue to dwell on how bad it was when you were suffering from it. Just take steps every day to be a little bit more tough, a little less pinko, and a little bit less of a sop.

You can start by saying to yourself, every morning: "Nobody else owes me a living. I am responsible for my own success." Make it your mantra, and pretty soon an added side-benefit will be that you stop spouting socialist nonsense.

Terence said...

Insolent Prick,

Have you ever considered changing your name to Bitter Dork?

Span said...

Terence, quite apart from making me chuckle, thank you for your comment about your own progress.

One thing that has been oddly beneficial for me was holidaying in the same spot every year, something I hadn't done since I was a kid. The first year, when I had been diagnosed only six months previously, I couldn't leave the building we were staying in. The second year I made it to the beach. The third year I made it to the beach most days and actually swam. The fourth year I walked up a hill! Those yearly excursions allowed me to measure the recovery that wasn't evident week to week (or even month to month sometimes). Also the positive and supportive comments of friends and whanau who didn't see me often and would notice improvement that I would already have started taking for granted.

Span said...

Zana, thanks for your great comment about other medical options. I was very lucky to have a great "alternative" practioner (actually a doctor of chiropractic amongst other things) right from the start, and I credit her hard work as one of the main factors in the relative mildness and shortness of my illness.

For about the first year I was sick I reacted to all sorts of things that had never been a problem before - some of those things I am no longer sensitive to, but some I still have to avoid. My body was over-reacting to toxins it had already encountered, I think, and it still does that sometimes. I get more "food poisoning" than most other people, I'm sure - certainly I frequently get sick from eating something even when my partner, who may have eaten the same dish, is totally fine. My body just decides "hmmm, that could be dodgy" and then it goes about expelling it in the most effective means at its disposal. I just let it do its stuff mainly. Which is all a bit of weird mind body duality, but anyway...

I've used a lot of homeopathics too. That's what I used when I needed to come off the anti-depressants, homeopathic seratonin. I tried cutting down the prozac (which was already quite a low dose) and it didn't work, so I looked for another way. Whether or not you can scientifically prove homeopathy I honestly don't care about. If it's all placebo effect then that is fine by me - it's not harmful and it worked, so what's the problem?

I also found that drugs only do so much for mental illness. If you don't examine the triggers and so on then you'll be on drugs the rest of your life. Some people I suspect do genuinely need to be on drugs for life, because of the extreme nature of their chemical imbalances. For me I found cognitive behaviour therapy (look IP, we agree on something!) incredibly useful, although it's still a challenge to keep it up.

Span said...

IP, dear dear IP. I hope that no one you love is ever afflicted with something you don't understand. I hope that you yourself don't have to deal with the kind of prejudice that others do, from people like yourself who look to score political points in every situation.

I did not think this post would be so controversial. To be honest I did not even think it would get any comments. I was just writing about what happened to me, and what it was like.

Tell me, do you go around denying those who have glandular fever, or arthritis, or mental illness (you may have accepted depression exists from your previous comments)? In years gone by all of these illnesses, and many many more, have been represented as mythical, and yet all are now accepted and recognised, and treatment has come along considerably since then.

When I was first diagnosed I had a friend who was a med student. He was quite far along in his training, and in the second year of being sick he would visit me occassionally. Each time he would size me up for whichever condition he was studying, because he couldn't believe I had something he couldn't understand. I didn't need him to understand, and I don't need you to understand. There are always things in life we aren't going to understand - accepting that is something we all need to do.

Insolent Prick said...

Quite the contrary, Span, I do believe CFS exists. It's just another name for hypochondria, which is a legitimate mental illness. I also agree that depression exists, as a legitimate mental illness.

What I don't agree with is the voodoo remedies that pinkos prescribe for themselves, coupled with vast amounts of taxpayer-funded counselling and pseudo-treatments.

I simply disagree with you on the treatment for hypochondria. My view is that you don't pander to it to make it go away. You simply encourage the patient to harden up and stop whining.

che tibby said...

I=====D

now, in case you're too silly to know how, the pointy end is the bit you dig with.

Span said...

My you've made a lot of assumptions in your comment Ippsie. Actually it was pretty much impossible to get any tax-payer funded treatments, you'll be pleased to know.

Anyway, please forgive me if I believe actual scientists rather than you:
http://www.newscientist.com/article.ns?id=mg18725093.700

anarkaytie said...

Hi Span,

Where do I start? IP is a complete intelligence free zone, so I'm going to flag any attempts at rebuttal.

I've had CFS symptoms, and a couple of minor crashes from which I've recovered too soon for a complete CFS diagnosis, so I'm not all the way on your path, but I know where it goes. I had 18 months last time of being flat on my back, sleeping and eating, and hurting like hell whenever I did leave the house to do essential tasks, like grocery shopping and paying bills. I can relate to not being able to go collect your car for 3 days!!!

I have been allergy tested, I have removed some allergenic foods from my diet, I use homeopathic remedies, and I avoid all the various pharmaceuticals to which I have had adverse reactions in the past 8 years. I'm actually very loth to try any new prescriptions, due to my gluten allergy, as many pharmaceuticals are compuonded with wheat-based "cornflour".

When I'm getting in trouble, my symptoms flare up and include: large muscle pain, headaches, food intolerances becoming more severe, sensitivity to light and noise, sleeping disorder(either too much/not enough), and when it's getting really bad, stuttering, and cognitive difficulties which prevent speech production (forgetting nouns, etc...), all of which tends to lead one to feeling a bit depressed, not the other way around!! Also, the pain and fatigue lead me to suspend my social life, which adds another layer of dislocation to my life.

I have twice experienced "crashes", and I have returned to cognitive functioning, and further university study. I have completed a BA, and am currently doing Honours. Finding a part-time study regime has made it possible to spread papers so that I can complete work, and working within a School (Gender & Women's Studies) who are supportive has also made a difference.

I self-edit ferociously, and am my own worst critic. I expect nothing but my best from myself, but have had to learn that good enough can be handed in, if the alternative is not completing!

You are not alone, and you are part of a socio-demographic which tends to include highly motivated, high acheivers with some environmental and some hereditary pre-conditions to this kind of degenerative autoimmune disorder. My family are riddled with allergy and asthma, which is a common note for many sufferers, if adequate genealogical research is made. (This runs through by skipping some generations, and not appearing in every branch of a family, but latency results in people who think there are no allergies in their family being affected by the latent disorder under the "wrong" conditions of environmental triggers.)

I hope this testimony helps you.
Just ignore the bigots and the morons!

Single Malt Social Democrat said...

Join us next week when IP tells sufferers of more illnesses, including post-natal depression, schizophrenia and manic depression to harden up and stop being so lazy!

But seriously, just because medical science has not fully figured a condition out, or found an effective cure for it, does not mean it is not a real illness. Medicine is a constantly evolving discipline, there are plenty of things it does not account for yet.

Insolent Prick said...

Anarkaytie:

I do respect the fact that you think that you have a legitimate illness, with legitimate symptoms. I also note that wimmen's studies departments at university, in particular, thrive on having poorly-functioning people in their classes so that the academics can sit around singing Kumbaya in lieu of rigorous scholarly pursuit.

But the reality is that CFS is a socialist disease that only exists in a happy-clappy environment that tolerates it. The solution for you is not to dwell on all these pseudo-symptoms that you honestly believe you have, but to accept that you just don't have them, and the illness doesn't exist. As long as you pander to your own hypochondria, it will only remain.

I can guarantee you that if you stop studying such mind-bendingly stupid crap such as women's studies, if you make a commitment to yourself to not rely on the State for your income, and decide to go out and get a good, honest job, and basically stop moaning about an illness that doesn't exist, then your illness will disappear.

Anonymous said...

Oh.My..! Perhaps if we didn't have such a mind-bendingly low wage economy and more/all folks could afford private Income Protection? Oh wait, the state functions somewhat in stead of that, gathers, holds and dispenses by need - although whether the needs of drawers are effectively met is debatable.

One medical(allopathic)-model therapy that still isn't widely known, but has helped some people is based on the Infectious Theory. An overgrowth of mycoplasmas (a rather commonly occurring gremlin) can be responsible, or partly responsible for CFS/ME (and FM, too), though the tests for that are still not available in this country as far as I know. The treatment is with antibiotics, usually from the tetracycline family. People with rheumatoid and other arthritic family diseases have also been helped by this. http://www.roadback.org/

Anonymous said...

One of the links at the Road Back site leads here http://www.immed.org/illness/fatigue_illness_research.html where cellular changes/damage is being explored and seems like it is related to the New Scientist article info Span posted up thread.

che tibby said...

ip, i've got to ask...

do you actually even like women?

because the kind of anti-women bullshit you're constantly spouting makes you look like a rather frustrated and angry friend of dorothy.

maybe you should read the new scientist article, and get a bit of a freaking clue. honestly mate... you're an embarrassment to real men everywhere.

Ms Klake said...

IP: I suspect your reasoning is partially due to your own political ideologies. It actually makes total sense that you would think of this as a 'socialist' disease, because if the more libertarian types had their way those people would work or die, therefore eliminating the illness entirely:-)

Brett D said...

A 'socialist disease'? Hilarious. If i just get tired do I have a 'social democrat disease'? If I go for a run, am I jogging in a particularly 'libertarian' way? What if I feel guilty while being lazy - would that be a 'Catholic socialist disease'?

IP reminds me of the (possibly apocryphal) cardinal who refused to look through Galileo's telescope because he knew that the moons of Jupiter couldn't exist according to his earth-centric theology and therefore to actually see them would endanger his soul.

Note of course that IP carefully ignored the New Scientist link - just like the cardinal.

For other another instance of fundamentalist theology or ideology (same thing, really) in the recent century, look up a fellow named Trofim Lysenko and the disastrous effect he had on Soviet agriculture - all because someone with a moustache decided that his hypotheses were ideologically gratifying.

If someone really wants to do some work, perhaps they can find out where IP got his medical qualifications!

You see, if he didn't have any qualifications and was pronouncing on medical conditions with an air of assumed authority, he'd just be a quack - or delusional.

Brett D said...

Come to think of it, this could be quite fun. Let's see if we can pin ideological labels on other diseases.

Cancer is probably anarcho-syndicalist or at least secessionist, though some might argue that it's capitalist. This can be a subject for debate!

Tuberculosis, causing paleness, must be white supremacist.

Chicken pox and measles are obviously socialist - the red spots are a dead giveaway.

Allopatia or simply receding hair has associations with nudism, which was one protest used by an obscure Russian sect or Christians called the Dukhobours (allowance made for transliteration from Cyrillic) and clearly reveals crypto-communist sympathies. It could also mean that one is a closet Buddhist.

Hmmm, that would mean that baldness means deep ideological confusion.

How about physics? Clearly the sun is a communist because fusion causes it to shine and that is cause by the union of atomic nuclei. This happens under conditions of extreme heat and pressure, clearly in keeping with Marxist ideology and its emphasis on 'permanent revolution'.

And all the stars shine that way!

My God! The whole science of astronomy is a communist conspiracy!

Not to worry, however, supernovae represent the burst of creativity that ensues when the communist-fusion process reaches its ultimate contradiction.

That's such a relief. Now I can look at the night sky knowing that freedom is secure and all the nebulae are taking responsibility for themselves. Phew!

Brett D said...

do you actually even like women?

Sorry Che, you should know better than that.

Of course IP loves women - just as long as they aren't unwomanly (hairy dykes, reds) or too womanly (playing guitar, relating with other women in any way whatsoever). All women have to do is sit up on their pedestals of manly admiration, being radiantly pure and beautiful - and silent. Except when they're in the kitchen, or pliantly on their backs. You see, it's quite easy.

OK, without sarcasm this time (it comes way too easily for me, I admit), the psychology of misogyny rests on a very simple system of cognitive dissonance. There are plenty of bastards who say that they love women, except when they, except for, if only... and then of course they have to be "disciplined".

Oh damn, I'm being sarcastic again.