Forgive me for the silence on my progress – I’ve been at war, it’s been all-consuming and I am battle scarred. The past two years have been unbelievably intense, all about trying to get rid of the fungus within me. I’ve been so involved in what’s been happening on the inside, I can’t believe how quickly external time has passed.
Re-reading my last post from September 2021, I see that I have come a long way indeed and really refined my understanding of what’s going on – especially of where the fungus is and how it behaves. I’ve been working so hard, almost to the exclusion of everything else. I still haven’t completely eradicated it – I continue to find little pockets in some very deep places, especially in my spine – but I’ve got rid of so much and think I’ve broken it’s grip. I’m on top for now, at least.
First, a recap… since 2013 I’ve been discovering the problem and sorting out the mess/damage caused by the previous 11 years (2002–2013). I found that a pre-existing deeply invasive fungal infection was allowed to run riot because of a Multiple Sclerosis (mis)diagnosis and the ‘treatment’ it entailed. (I’m just now taking the steps to get this newly investigated – watch this space).
By 2013, I was in a state of complete physical collapse, unable to walk well or move properly, incontinent, cold and stiff inside, with cognitive fog and visual disturbances. I totally rejected further medical intervention as I felt this had made me so unwell, and took charge of my own health. I didn’t know what was wrong nor how to fix it, but I trusted myself and knew that what had been happening up till that point was not the solution. (For the full story, I invite you to go back and read Chin Up.)
What follows is what I’ve been doing that has led to my understanding of what’s happening to me.
Through a 24/7 obsession, diligent observation, experiment, and research (and shielding myself from outside influences so I could focus on this), I discovered that my muscles and connective tissues were colonised by a fungus that had come from within and grown slowly over the years. It had got into my lymphatic system, making the lymph take different routes and blocking its proper flow. And because fungus loves it damp, the infected tissues held on to water. So it’s been a process of both getting rid of the fungus and getting rid of a load of excess fluid.
The main blockage and lymph re-route was within my thorax (inside my chest, but at the back, on the front of the spine). This affected me all over (lots of fluid backup lower down in my abdomen and legs, for example), but particularly in my upper back, the back of my neck and the back of my head.
Fungus and blocked fluid had accumulated here, making it all rigid, ruining the muscles and destabilising my spine. It was very difficult to be upright and a lot of the damage over the years has been caused by my body trying to compensate for this fundamental weakness as I carried on as normal. So part of my method for getting rid of the fungus was to not use this area! This has meant a lot of lying around with my head supported, apparently doing nothing, but internally healing.
Like chemo or radiotherapy, my treatment at times has also made me very unwell indeed. Or maybe like how when you have a cold, most of the being ill you feel is your immune system kicking in and getting rid of the nasties. What’s more, I discovered the fungus was not some inert dirt, but a live organism with a strong will to survive.
So it has been war indeed (and I don’t use that word lightly) – the process of removing it is slow, non-linear, disabling and distressing. All the movement of fluids deep within means constant change, new blockages, the worsening of some problems as others get better…
Feb 2022: A strategy of dehumidification
“Epiphanies are less a sudden bolt of novelty, more an arrival at a place where a part of you has been waiting for a long time.”
Rose Cartwright, mental health advocate
In early 2022, I was continuing to slowly dislodge little pockets of fungus when I had an epiphany: as the fungus loved humidity so much, it surely would hate it dry. Summers had been such a nightmare for me as it expanded, grew, hurt and blocked the flow of lymph. It had been dormant until I lived in damp student housing in the UK; it went dormant again in the desert atmosphere of New Mexico when I lived there for a year; it was a steamy stay in Boston that triggered the strange symptoms that led to the MS diagnosis.
Aha! So I had to dry it out like a damp towel and create an inhospitable environment within.*
*It has never made sense to me that the inside of my body is not damp enough and atmospheric humidity affects the fungus so much, but it does.
I bought a dehumidifier and used my fan heater and hairdryer on specific spots. I bought a thermometer with a hygrometer (measures relative humidity) and started paying attention to the numbers.
I had no idea my life was going to get even weirder.
At first, the effect was dramatic. If the atmospheric humidity in my immediate surroundings (i.e. my room and the air I was breathing) fell to less than 50%, this thing in me complained and I was really ill – my immune system was able to deal with it more effectively, I guess. It was horrible. It was like disturbing some sludge at the bottom of a pond, and all this toxic stuff was floating around in my system until it got cleaned up. I often felt cold and damp inside my back and spine, as well as pelvis and legs. What came out of my digestive system was (can still be) disgusting and caused extreme irritation of everything around there, as well as being extremely unpredictable.
“Nyagh! Bad day. I am SO fed up – it hurts, it’s disgusting, I feel gross all the time, I can’t do anything.” – my journal, 24 March 2022
But, in the back-to-front logic of this whole process, being unwell meant I was on the right track! My goal was to eliminate the fungal growth in me. Basically, it carried on this way the rest of the year and into the next. At times the natural air humidity was really low (less than 40% RH) and at first I thought this was killing it, but it seems that it’s more like the fungus shrivels up, unblocking my lymph like clearing some clogged up pipes, so then lymph flows better and moves the waste it was carrying along the system.
But then the system can go stagnant again as the fungus recovers a bit and expands. Fluid backs up and I hurt and/or can’t move. So I’d go through cycles of dislodging some (and feeling looser, freer where it had been), moving it, then having to tackle it at a new place, the fungus winning, me winning… It was, and still is, constant change. But the places it’s dislodging from now are older and deeper – I’ve generally got rid of it from nearer the surface.
My own private mycelium
Fighting another species that’s made my insides its home has been quite an experience. The more I’ve weakened it, the more I’ve become aware of it, whereas before I had no idea it was there. But I know now that it plugs into my nervous system somehow: it feels what I feel, I feel what it feels.
In hindsight, I think it even influenced my behaviour to ensure it was getting what it needed. I used to have a fondness for sweet things – cutting out sugar showed me how much it depended on (and caused) my sugar cravings. It often made me feel the cold so I’d wrap up in extra layers, keeping the air around me nice and moist. Over the years it made me lethargic and stiff – it didn’t want me to move. It restricted blood supply wherever it grew and grew best in places that didn’t move much. Lack of movement also slowed down lymph flow, shielding it from my immune system.
Wherever I had any injury, it went there and grew instead of new tissue. Getting rid of it made a couple of small old scars very sore, not to mention my busted right ankle (full of fungus) and deep in my quadriceps where I used to inject the interferon. Like wearing an internal damp blanket, It intensified my experience of temperature: when the weather was hot, it was boiling; cold, I was freezing.
As I have fought it, it’s adapted to the new circumstances, trying to survive. It almost has personality: alive, intelligent and willful. But the craziest thing is the connection to the outside air humidity. I’ve been a living hygrometer. I felt porous, like the environment outside could just pass through me. If the humidity suddenly drops or rises, I know – well, the fungus knows, so I know – through the air I breathe, and through my skin, which is what led me to a breakthrough…
Next: Part 2 – Dropping the A bomb
Photo by Jaime Spaniol on Unsplash
The medial malleolus 