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So, my own war on personal terror finally started two days ago – and this one isn’t phony. I really do have evidence of Weapons of Mass Destruction inside me: a descent from the milder forms of ME\/CFS for 12 years into (now) complete bed-boundness over 9 months; permanent unilateral inner ear hearing loss; gastric disorders I never dreamed could hit me so hard; seemingly complete loss of restful (delta? stage four?) sleep; and the loss of 6 stone in weight (84 pounds, 38 kg) since October. I imagine teams of little white-coated UN inspectors inside my gut ticking their clipboards, packing their bags and getting their hats: “Yep, OK. This<\/em> time there’s evidence”. Not so much a smoking gun as repeated chemical attacks: enough to take some kind of action, surely?<\/p>\n My NHS doctor’s reaction over the phone? “Well, if you’re too ill to come in, what’s the point in me booking you an appointment with a GI specialist?”. It’s a very strange thing to be able to hear a shrug over the phone.<\/p>\n When you’re well, you don’t imagine, particularly in the UK, that if you got this ill doctors wouldn’t rally to find out what to do, try things, do a little more than a few standard tests and say “nope, you’re not going to die” and send you home. You imagine broken legs, and “Carry on Doctor”, or high temperatures and stethoscopes; or if you’re morbid you think of those cardiac arrest doodahs and beeping monitors. But nope: suddenly losing 6 stone in 9 months or permanent cochlear damage doesn’t seem to perturb doctors in the UK, if somewhere on your medical record the words “chronic fatigue” appear. It’s like having the Joker in card games: because it can stand for anything, it belongs nowhere; when symptoms are mild, it can be classed as “possibly psychosomatic” in hushed tones; when suddenly dramatic, their undefined class of illness “CFS” can be used to account for every symptom with a sympathetic shake of the head and “what can you do?” look.<\/p>\n I’ll try to leave the rest of that anger behind now, as the point of this entry wasn’t that: it was to try and use a possibly brief spurt of energy to say something about where I am physically. This is entirely selfish, as I’m so exhausted I’m finding email correspondence extremely hard work, and I can always point you here instead can’t I? I know it’s going to seem terribly rude when I do, but needs must.<\/p>\n Just before I dive in, I want to say something on behalf of me and all those with chronic disease: how unfair<\/strong> it is that we, unlike others, have to fill our weblogs with entries like this. They’re interminably boring to the well, and we know it. It’s unjust that we don’t have parties, and drunken yachting incidents to blog about. We don’t do it because we’re obsessed with our illnesses – we find them as boring as you when we get a little better. We do it because this is<\/em> our lives when things are really tough, and we’ve found succour from others whose lives are flat-ironed by the same experiences. We do it because we’ve found information in similar articles that has helped us, we do it because we just want it said out loud. The rest of this entry will have little interest for the average reader, so I’ll draw a curtain around it for you to skip if you need to. But you’ll miss my terribly deep insight into the human psyche at the end if you do.<\/p>\n This is already feeling barely coherent, so please stick with me if you want to ask “how are you?” (kind people). Here’s an answer.<\/p>\n <\/p>\n In a dreadful entry, shockingly as long ago as April<\/a>, I see that I mentioned a parasite I’d been diagnosed with – it’s called Blastocystis Hominis<\/em> and I’ve only finally now got to the stage where I’ve started bombing it. This was diagnosed via private testing by my private specialist needless to say – a test conducted by the London School of Hygeine and Tropical Medicine. “Parasite” sounds scary and makes you think of creepy hairy legs and worms, but this one’s tiny, has lots of friends, and lives in the bits of your body you wouldn’t want to live in. Probably because it has to live there, it gets angry at its lot, and can cause havoc. The conventional view tends to be that Blasto generally causes no harm, except in “immuno-compromised people” – meaning AIDS patients, and similarly unfortunate patients. Thus the NHS, the UK’s national health service, have no wish whatsoever to test for it, and should they find it by mistake<\/em> will put their fingers in their ear and sing loudly “lalalalala” until you go away. The “immuno-compromised” bit is where that Joker above comes in – people with ME\/CFS aren’t really<\/em> ill, just a bit off-colour, so clearly the Blasto can’t do any harm, and some other mysterious agent X must be causing their odd symptoms: in all likelihood, they just managed to think away those 6 stone: they’re often as good as that Paul McKenna on TV you know, or that bloke in the glass box suspended over the Thames. Oh wait, he didn’t actually eat.<\/p>\n![\"carry.jpg\"](\"\/weblog\/wp-content\/uploads\/2025\/10\/carry.jpg\")
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Britain really is a ridiculous place: unending obsequiousness towards anyone in the medical profession seems to be weaved into our DNA, and if you dare<\/em> to actually look anything up on “The Internet”, you’re self-prescribing. And you will pay for your lack of respect with pestilence and disease.<\/p>\n