Readers (if there are any about) will probably have noted that I get sick a lot, in fact there always seems to be something going wrong, health-wise, that requires some pretty heavy duty medication. I figured I'd better 'come clean', in accordance with the plan for the New Me; the more open, non-cryptic, non-secretive me.
I don't want this to sound feeble, and all self-pitying and woeful, because that's not how I feel at all. I think I'm pretty damn lucky, with what looks like a great, exciting, adventurous life ahead of me, in spite of some pretty major health problems that do affect quality of life.
I haven't always felt this hopeful and excited about life, though.
From birth I had terrible health problems that no doctor in Perth, Madrid or London could diagnose. I was always in severe pain; sensationally evil migrainous headaches; neck and back aches that defied description; constant nausea and vomiting and a basic failure to thrive (for example, when I was eight years old I was the height and weight of a three year old - truly pathetic); problems with balance and general physical inadequacy.
It wasn't fun, in fact it was bloody awful. Not just the pain, which was/is horrific enough, but the repercussions. The exceedingly low self esteem and body image, zero confidence, the lack of a 'normal' child's social and physical activities ... and what made it all so much worse was there was no 'reason' or explanation for why I was the way I was, and therefore no hope.
As anyone who had the bad luck to be 'different' as a kid will appreciate, this situation made me a prime target in the big bad ugly world of the sandpit ... Right up through high school even. Whoever said they were a person's 'golden years' obviously had no concept whatsoever of what cruel, bestial, narrow minded little shits kids can be. And I won't even go into the total lack of awareness and support of the school management, administration and pastoral care system (and I'm talking private Catholic and Anglican schools here, both of which prided themselves on their care and compassion - Jesus Wept).
Anyway the whole health issue continued unabated and in fact worsened as I hit my twenties. More doctors, specialists, physiotherapists, chiropractors, acupuncture, witch doctors and quacks - you name it I tried it. Still no answers. The general consensus from the medical profession was that I was neurotic and depressed.
Of course I was fucking depressed. I was a bright, self-aware and sensitive person in absolute agony (physical and mental), my life was the pits due to factors entirely beyond my control, I was lacking in hope and didn't think I was going to make it. And all the damn medicos could tell me was that I was depressed and lacking in self-esteem. Well, duh.
By the time I was 26 I was pretty much at the end of my rope. Then someone-or-other (friend of a friend of The Headmistress) suggested I see a particular doctor, who was a rheumatologist and sports medicine specialist. I'd really had it with doctors and examinations and endless tests by this time, and was recalcitrant to say the least ... but decided I'd give it one last go ...
And thank the great and glorious universe that I did.
I made it to the appointment, met the specialist, had a full examination and a very long chat. Then The Lovely Doctor Person (who I shall call Zeus for the purposes of this journal as he is a great and glorious god amongst mankind) sat me down and proceeded to tell me what was wrong with me and why; what the prognosis was and what we were going to do to improve life.
I believe I may have cried.
So anyway I have this 'thing' called Ehlers-Danlos Syndrome, a congenital connective tissue disease caused by the body producing too much of one kind of collagen and not enough of another, or something. This means that all connective tissue, be it tendons, ligaments, skin, artery walls, cartilage, whatever, is "floppy", more the consistency of jelly than rope. There are a number of "types", affecting different areas eg, vascular system, skin problems, and I have the "hypermobile" type manifesting in hypermobility of joints, though I also have other related problems. I get arthritic type pain in just about all my joints, plus severe muscle spasms in my neck, shoulders and back in particular because of the additional stress and trauma on those joints.
And prognosis? Well there's no cure, and there is a fair bit of ongoing wear and tear, so the main lines of attack are (a) reduce pain and (b) increase muscle tone and strength via physical therapy so that the joints aren't under so much pressure. As far as pain management goes, I have a lot of really good drugs (hmmm maybe I shouldn't write that), plus I use relaxation and meditation techniques, yoga, apply heat packs and anti-inflammatory gels to affected areas yadda yadda.
Part B is an intense rehabilitative exercise programme including weight training, stretching and isometric exercise, cardiovascular work and anything else I fancy. So, I go to the gym about three or four times a week for strength training and floor work (weights, stretching, various floor exercises), and I also do some Pilates and Ashtanga Yoga both at home and in classes. I swim, and catch a boxercise class when I can find a good one going. I enjoy the whole exercise thing tremendously; if I miss a couple of sessions in a row I get real bitchypants so its obviously beneficial psychologically speaking – yay for endorphins !!!!
I love the feeling associated with being physically fit and strong; it's very empowering, particularly when all my life I've been a wimpy weakling! There's also rather nice side-effects; being fit and taking in regular exercise really does make you feel better about yourself, better able to cope with the stress of work and life, and there's also the teensy-weensy-minor-hardly-worth-mentioning spin-off that one tends to end up looking fabulous and toned and seriously smokin' ... hee.
This hasn't meant an end to pain and problems associated with the condition by any means; I'm in pain all the time, its just a matter of degree. A "good" day is one when I am aware of pain, but it doesn't affect how I function in the least, say a 5/10 on the pain scale. A bad day is about an 8/10, when I find it difficult to function and am bed-or house-bound. A horrific day now - well, when major neck and shoulder muscles go into spasm there's nothing much to be done. The phrase "muscle spasm" sounds pretty benign, but honey, it ain't. I scream, I writhe, I beg, I beat my head against walls to make the goddamn fucking thing please please please stop. Off the pain scale chart, basically - 15/10? The best drugs they've got don't work, and that outrageous scary pain can go on for weeks and weeks.
And life doesn't stop for painful episodes, I still have to go to work and clean the house and pay the bills and go to gym and do the shopping and sometimes I just want to curl up in a ball and wait for it to all go away. But that isn't ever going to happen so I keep on fighting day by day and getting as much fun as I can out of the life I have, 'cause I'm pretty damn lucky really. I can walk and talk and read and sing and dance and ... well, Life is good.
Oops the health saga doesn't end there! Hahahah bet you were just heaving a HUGE sigh of relief but wait! There's more!!!
After a year of seeing Zeus, he was concerned about my ongoing reflux and general gut related bleaughs, so he sent me on to a gastroenterologist as he thought I might have oesophageal ulcers. Off I trotted to The Gut Doctor, who did the whole examination thing, then booked me in for an endoscopy (where they pass a tube down your throat so they can have a look at your stomach and small intestine - yummo). And what did The Gut Doctor find? Not only ulcers by the truckload but that I had Coeliac Disease as well. For fucks sake, like - talk about ODTAA (one damn thing after another)!
So that's the whole health story -- oh I also have pernicious (B12) anaemia, a number of neurological weirdnesses, fibromyalgia, osteoporosis, iron deficiency, heart murmur, endometriosis and probably a few things they haven't found out yet. Basically I'm a musculoskeletal neurological gastrointestinal cardiovascular gynaecological nightmare. Hee. I'm so speshul :)
Check here for further information and links regarding Ehlers-Danlos Syndrome. The Eat section has plenty of information and tips on Coeliac Disease.