To recap: I am in my mid-thirties and have trouble with walking, movement, continence, vision, foggy thinking and low energy levels (to put it simply). After 11 and a half years believing I had the lifelong degenerative neurological condition multiple sclerosis, a decade of harrowing weekly intramuscular injections of interferon beta-1a, and a disastrous invasive intervention that caused a couple of nasty urinary tract infections, I’ve had a kind of epiphany.
I’m sure the injections are the cause of my troubles, so I stop doing them. I’m also questioning the initial diagnosis. And I have cut off contact with the medical profession. So begins the story I really want to tell…
Over the next few years, whilst trying to recover from all this and discovering that the undoing is more complex than I thought it would be, I ditch training as a psychotherapist, chuck in my old life and move to Spain with no plan.
I’m glad I did it, but I didn’t make life easy for myself.
After dropping out of life in isolated Mallorca, I finally escaped my island prison and moved to Barcelona. But my problems came with me, and were compounded by two or three more years of general life instability. Housing, work… Took me ages to get it all sorted (I’m not sure it is yet, to be honest).
And one day not long after I moved into the sixth apartment in less than two years – but this time I’d finally found the perfect place – I had another epiphany.
Revelation 1: Fungus
It was a sunny Sunday afternoon at the end of October 2017, and I was still bloated and sluggish after a long, hot, humid Mediterranean summer. It occurred to me that maybe I had a yeast problem in my digestive system. [Actually, it re-occurred to me. I’d had this thought in December 2015 but with everything else going on in my life, had forgotten about it.]
So the next day I ate some probiotic yogurt*, and I felt remarkably different within a couple of hours. I was astonished.
No doubt there was too much fungus** in my guts. But could fungal overgrowth also be the cause of all this muscle trouble over the last few years? Why did I even ask myself that question?! I knew that it wasn’t just bad habits nor stress that caused my inability to move well and my body to not work properly, and I was way past thinking it was MS, but I can’t say how I made the connection with fungus.
I just had a sense that there was something alien in my body.
I had thought for years it was ‘residue’ from the interferon I had injected myself with for a decade. But a body-wide fungal infection? I couldn’t believe myself – such a disgusting idea that my whole body was overrun by yeast, all my tissues gone spongy like a fungal nail – but I thought it was worth going with this hypothesis and treating it as if it was.
So I stopped eating sugar altogether (an attempt to starve the fungus), ate probiotics to encourage growth of other microbials that would crowd out the fungus and strengthen my immune system, and took some natural antifungals like garlic and coconut oil.
Even though I functionally got worse, I knew I was on the right track. Something was shifting. I stuck with it, my body did what it had been doing (i.e. purging itself of toxic stuff) but more effectively, and I became more and more convinced. No-one else believed me, mind you. So one of my aims became showing everyone what I meant by getting better.
Revelation 2: Lymph
Spring 2020, and not being allowed out because of the coronavirus pandemic provided the much-needed opportunity to focus on healing. I know it was hard for so many, but I must be honest: for me, the lockdown was my prayers answered. A break from trying to carry on as if I was physically alright.
It wasn’t much fun, mind you. Everything got more intense. I continued with the massaging, stretching, heating/cooling I’d been doing, and the purging it caused. I also watched a lot of anatomy videos to understand better what might be happening inside me.
On some hunch, I watched a video about the lymphatic system and I wondered… There are big clusters of lymph nodes in the front hip/leg crease (inguinal region) and on the bony bit of the skull behind the ear (mastoid process). I had much pain and a feeling of blockedness in both, among other places.
So I started especially focusing my efforts on getting lymph moving. It was a more targeted version of what I’d been doing already, with added deep breathing, more water, specific movements, skin stretching and light massage. And a reinvigorated motivation to heal.
It took three weeks before I started to notice results, and another couple of months before I shifted a big blockage somewhere in the very middle of me. But the effect was very obvious. I had hit healing gold! This was it, the root of all my troubles.
My lymphatic system was stagnant and so lymph had not been draining away like it should. Lymph is fluid that surrounds all your tissues. It collects all the cellular waste that is constantly being produced and flows slowly upwards through your body, passing through lymph nodes that contain immune system cells to attack anything that needs zapping. Eventually it all converges to form the lymphatic duct, which runs up through your thorax past your heart and lungs. At the digestive system, it also collects fat absorbed from food so it can be distributed by the blood. The lymph from legs, pelvis and abdomen, now full of material, moves up to get dumped into your bloodstream just under the collarbones. Garbage disposal. Nutrient transit.
But my system was congested and so the fluid was backing up. There was (is!) accumulated lymph in my legs, pelvic cavity, hips, and abdomen as the normal lymph channels had been blocked (by fungus, I think). I also discovered on closer inspection many hard little lumps in my neck (blocked lymph nodes), and I realised all the pain, pressure and blockedness in my head and neck was dirty lymph too.
I learned there is this mechanism called ‘collateral circulation’. If the normal pathways get blocked, your body builds new channels to try and get around the blockage. Blood vessels do it too. Like a diversion for roadworks. Clever, eh?
Well it seems I had a blockage in the main lymph channel somewhere in my chest, and so my body started rerouting the flow into my back, just left of my spine at about the third rib from the bottom. The tissues around my left shoulder blade got all solid (so a massage therapist told me once, and I could feel it too), and lymph also backed up into my neck and head.
The way lymph drainage is structured, it would have been filthy (and fat-laden) lymph from my digestive system, pelvic area and legs (carrying fungus, interferon, and regular metabolic waste) that was carried into my back, shoulders, neck and head. Unbelievable.
I know all this because it’s been slowly draining, taking away with it all the heaviness, soreness, and stiffness. Nerves freak out as it slides past them. The old fluid moves and it’s sore, I’m quite unwell as it finally enters my system and my body’s waste disposal mechanisms deal with it, until it finally is evacuated (foul and toxic) down the toilet.
This has been a continuous cycle, so how it feels changes all the time. From hour to hour even. I imagine the old lymph like thick gloopy mucus, oozing through my system, causing havoc when it passes a sensitive spot, then eventually moving on as it gets sucked through the lymphatic system.
And then it’s gone, as has – bit by bit – the pain and dysfunction (bye bye “inner ear virus”!). The reservoir has shrunk and nerves that were trying to function in a toxic environment are healing. Tissues are less spongy, more lively, lighter and more flexible…I can’t quite explain it.
It’s hard to explain, too, how I can be utterly exhausted, my insides turned out and scraped clean, feeling just about as shit as you can feel, yet at the same time, be super happy. Feeling awful meant I was another step closer to sorting it all out.
I am sure this is what’s been happening, just due to what I do, these cycles that I go through and parts of me gradually functioning better and the soreness going. Though I guess it is just a theory. I’d love to meet an expert in the field who can validate my experiences.
Revelation 3: Ankle
This shouldn’t really be a revelation. It’s not like I’d ever forgotten that I’d had an accident, and I’d always lived with the consequences. But I guess I didn’t appreciate what a prominent role it played.
When I was 23 and rather merry at a wedding reception, I dislocated my right ankle (breaking my medial malleolus, hence the name of this blog). Stepping off a low step, I suddenly found myself on the floor. When I sat up and looked down at my right leg, the shin was straight but the foot was sticking out awkwardly at ninety degrees, like a child’s drawing. Luckily for me, the father of the bride was an orthopaedic surgeon! He legged it over and snapped my foot back into place. I passed out.
It was the end of the night, so thankfully I didn’t completely ruin the event. And thanks to his quick action, I didn’t lose my foot. I did mess up my walking for the next 20 years, though.
After 3 months confined at home (I’m experienced at this), then another 3 months of half-hearted physio, I just wanted to get on with life. But then I got diagnosed with MS (six months after the accident), which was kind of distracting – at the time it sent me into a spin, then over the next several years anything wrong I put down to MS progression (curse that diagnosis) and forgot about that damaged ankle.
I simply didn’t rehabilitate properly from this major injury, which led to spending the next decade compensating for the weakness by (unconsciously) using the hips and pelvic muscles in ways they are not intended to be used. My brain stopped relying on my right foot/leg for support. It just didn’t trust it.
Added to this, my legs were filling up with old lymph, on both sides from the knees down, but particularly around that old ankle injury. I’ve lost loads of fluid from there in the past year or so.
So I never really walked with strength and confidence since the accident. Then eight and a half years later, walking wonky but not realising, I tripped over my own feet in the street. The compensatory mechanisms finally gave up, and that’s when everything started to go super wrong.
It’s only been in rehabilitating my movement patterns that I’ve come to appreciate how significant the ankle incident was. And the presence of the ever-growing fungus/accumulating lymphatic fluid in my pelvic cavity and down my legs, affecting nerve function and weakening the inside of my legs since adolescence (if not before), explains how such a rare incident happened in the first place (the way the ankle joint is formed makes it quite hard to dislocate, even when you’re drunk).
How do I know my revelations are correct? And I do know – these are not just vague diagnoses I found through Dr Google.
My answer is years of observation, experiment and research. I could have a PhD in this. And ultimately, I had a load of health problems and now I don’t. My recovery is my proof.
Tomorrow I’ll write about the daily experience of the process of metamorphosis. It’s been tough and often gross. A perpetual up-and-down cycle on a zigzag path rather than a smooth improvement. A physical and psychological challenge that has lasted several years.
Because I must emphasise I wasn’t just coping with being unpredictably unwell and the physical challenges presented by a body that doesn’t work properly. I wasn’t in a medical bubble; I was carrying on with life as much as I could (including the head-spinning, confidence-flattening experience of moving country).
There was no guidebook or treatment plan. I was trying to figure out what was wrong with me – it became a journey of discovery that upturned everything I believed about my physical self. In the process of fixing my problems, I actually ended up rewriting the story of my life, looking at past events from a very different perspective.
And once I’d started, there was no stopping. The only way out was through.
NEXT: The day-to-day process
*Probiotics help in the body by altering the microbial environment in the gut – different species of bacteria and yeasts compete for resources and space. The more ‘good’ bacteria you have, the more they crowd out the nasties.
**I use ‘yeast’ and ‘fungus’ interchangeably. Technically, yeast is a type of fungus, which is the overarching term for a classification of a lifeform (neither plant nor animal). According to Wikipedia, little is known of the true biodiversity of Kingdom Fungi, with only a tiny proportion of species described and classified.