I’ll be going into some icky visceral detail in this post, so if things about the body turn your stomach, you might want to skip to the end.
Me, I’ve got to know the inner workings of my physical self rather well now. It just makes me love my body more, but it does mean I can talk about physiological stuff with the un-squeamishness of a clinician or the parent of a young baby. I’ve tried really hard not to be an old Mrs moaning about her lumbago, but is there any other way to talk about health troubles?
As soon as I stopped injecting myself with interferon beta-1a, my body went into ‘expel the shit’ mode. But at the time, I didn’t really realise that’s what was happening, so convinced was I that my physical troubles – bad ‘guts’ (sludgy poo), weak and sore belly/legs/hips/bum+shoulders/neck/head, unable to walk – were a physical expression of the unconscious.
Even though I was indeed heating, stretching, massaging and trying to free what I thought were tight muscles still full of interferon, I was also delving deep into my psyche, attributing physical changes to emotional states. I had theories of ‘illness from within’.
“My soul is wailing through my body.”
Being alert to what was happening inside me became all-consuming. It occurred to me that this was perhaps self-perpetuating, like giving a crying baby too much attention, but also a very necessary withdrawal. My physical troubles were serving as a protective mechanism, making me stop, reflect, and sort it out.
Looking back at my diaries, I was up-down-all over the place; sometimes energised and positive, other times falling down an emotional and physical hole, always frustrated.
I stuck with it, though, confident that my body just needed some time to recover after years of mistreatment. But I didn’t really consider how long that was going to take…
The Great Purge
Four years(!) later, and in October 2017 I remember my suspicion that I am overrun on the inside by fungus, I stopped eating sugar and yeast, and started eating probiotics every day. The idea was starve the fungus and strengthen my body’s anti-infection response.
I also tried some natural antifungals like garlic and coconut oil, and some Canesten cream now and then, but as this invader wasn’t on the surface, it was hard to reach it.
The first thing that happened was an eruption of itchy, crusty, scabbiness on my shins, with deep roots to the tissues below the surface. Totally hideous. It came from within, like the fungus was crawling out to die. It was about a year before the crusty patch all died off and faded away. It still gets a bit itchy there sometimes.
Apart from spontaneous die-off like that, I’ve moved around my body to wherever it was sore/stiff and massaged or stretched or squeezed. Sometimes I’ve used a hot hotpack. Later on, I realised the cold was useful – I now think it must force lymph to move (and shrink fungus?).
And I learnt that squeezing/clenching (trying to shorten a muscle or ligament) was more effective than stretching. There was stuff trapped really deep, and what I was doing released it for my system to clear away (more effectively once I’d un-fugged lymphatic channels).
So I’d work away on a certain place. Some ligament/fascia/whatever it was got sorer and sorer over a few days, then there was peak soreness followed by sudden relief as it didn’t hurt any more. Then the next 36 hours my abdomen would be bloated and unhappy, my sleep disrupted, dry, dusty brain fog and headache…then there’d be a nasty nasty bowel movement (sorry), then it had passed, and the cycle started again with another sore area.
I’ve experienced the oddest sensations. I’m not even sure I can describe them well. There’s been deep, internal itching, lots and lots of dragging aching, and a kind of sensation of creeping pressure pushing out, not painful but uncomfortable. Plus occasional stabbing pains, twitching cramps, burning soreness… Oof, intense.
Much of this I would call ‘extreme discomfort’ rather than pain – an awareness that a part of me is very much ‘on’ and I am unable to keep still, when normally I’m not really conscious of most of my body.
But sometimes it was super painful. Raw, shredded, frayed ribbons of me. Shards of glass in my neck/spine. Like I’d been severed then badly sewn back together. Some of the pain I came to recognise as neuralgia, the nerves themselves aggravated and crying out. Magnesium’s been good to calm my poor nerves down.
One of the hardest aspects to deal with has been the unpredictability. Each day was different but difficult in some way, be it incontinence, difficulty getting around, pain/weirdness, energy collapse… It would change over the course of a day too, depending what I was doing.
I’ve had many, many bad nights – I’d lie down to sleep, oh so tired, and 20 minutes later body gets lively: twitchy, itchy, infernal inability to rest. Or sometimes I’d just not be able to sleep, and would find out why the next morning, disposing of the toxic waste that had been moving through my system.
Having a bad night would then mean I’d lose the next day to feeling groggy and on-the-floor tired, a bit like a hangover without the good time beforehand. When I slept well, I generally had half an hour or so of a pain-free body to enjoy, but then moving around and being upright stirred shit up.
And every morning included running the gauntlet with regard to toilet activities. Most days, pelvic activity was stable enough that if it got urgent I was near a loo so it wasn’t a problem. But some days, managing my physical demands was impossible to deal with when trying to live a normal life out in the world. Like dragging around an uncontrollable tantruming toddler.
I was so glad of having to stay home due to the pandemic and always be near a toilet. I am haunted by the few times it went so distressingly wrong. I’d spend all day just managing myself.
This was the process pretty much since I stopped taking the Avonex. Not one hour’s break, let alone a whole day off.
I’d think I was nearly rid of it all, but every cycle seemed to drag out ever deeper trapped toxic stuff. When this shit was deep down in my tissues, things didn’t work properly but it was stable at least. Getting it loose meant releasing it into my lymphatic system, and then into my blood, so my body could deal with it. It was like dredging the bottom of a river and so disturbing the settled sediment.
A purging. A deep clean. Be gone with you! I’d think I was done, but it just kept coming, getting squeezed out from the deep recesses within. Those last bits from the bottom corners of the toothpaste tube.
I had various, forever-changing, daily routines to remove the lymph/fungus, fix the muscular damage, undo poor movement habits and reprogramme my brain. But I also had to do a lot of resting, and putting myself in the right position that was needed at the time (which often was incompatible with being in public, like squatting, legs wide, upside-down, or lying on my front).
It was a bit like when you have some water stuck in your ear canal: put your head at exactly the right angle and the tiny drop just trickles out. I had to put myself at the right angle, at the right time, when the weather was just so, depending on where my body was clearing that day.
So this was a slow and complex process that required constant internal watchfulness. Although the purging was more or less taking care of itself, lymph still needed vigilance to stop it stagnating and you can’t take a break from neuromuscular re-education. How am I using my body? Am I sitting on my sacrum? Am I putting the weight through my feet properly?
My body was in charge and demanding to be heard, so I was paying a lot of attention to what was going on internally: pain, sensations, bodily functions. What’s going on here? Are x and y connected? Then ruminating on it all to try and figure out what was happening. Having ideas and epiphanies (and dud cul-de-sacs), finding out about how the body is put together so I could connect what is known with what I was experiencing. Experimenting with interventions to see if I was on the right track.
‘Chin up!’ became my note to self. Both an instruction to literally change my neck position and stop collapsing my spine and ribs forward – Shoulders back! Stand tall! – as well as self-encouragement to stick at it and not permanently slide into the deep ditch of despondency.
The upshot is I have a new body.
Literally. Inside and out. Because of the purging of years of fungal overgrowth and retained fluid, it’s re-sculpted itself. I’ve lost excess flesh and have a new, leaner shape. I’ve become a touch skinny and boobless, but smooth and healthy rather than a bit doughy.
I have a bum where before there was none. My hips are in the process of not being such a weird square shape anymore. My thighs are on the way to becoming lean and strong, where before they were puckered and flabby. My belly will be taut – that area’s taking the longest time to clear, though I do have six-pack abs just through learning to walk again. The transformation continues to astonish me.
But more importantly what’s changed is not just how my body looks, but how it works.