The MS diagnosis did me nothing but harm
So after reading the whole story, I hope you can see why I get angry about that original MS diagnosis. It caused everyone, including me, to look the other way and the real problem to get overlooked. What’s more, it contributed to the problem getting worse. Then, to add even more awfulness to my life, caused new problems by using the wrong solution! Which leads me to…
Why no doctors
I haven’t asked the medical profession for help in my process of recovery, because the way I saw it, I wasn’t ill! At the beginning of fixing myself, all I was doing was stopping the Avonex and allowing my body to recover the damage done. I viewed my MS team at the hospital as the ones who had caused my troubles, so I wanted nothing to do with them.
But the months turned into years and I was still fucked. As I learned more about my body and what was working to make it better, I was more and more sure it wasn’t MS. But I knew it didn’t look like that. Seemed to me that I wasn’t going to be able to prove it to anyone else until I had completely recovered my health and abilities.
In Mallorca I couldn’t actually get anywhere, let alone to a doctor in a new country where I didn’t understand the system and didn’t really speak the language.
It was the same when I made it to Barcelona, and by now my not seeing a doctor had hardened into a conscious decision. I was wary of being sucked into the system, being too acquiescent and compliant, not being able to explain it and not being listened to.
Getting about to do my food shopping has been a challenge, let alone drag my arse all over the city for tests and appointments. I wanted to have a life (as much as I could) and was already spending enough time and energy focused on my physical problems.
Plus, I understood (more or less) what was happening, so I didn’t need a diagnosis and would have rejected any treatment. And as well, which problem to mention? There were so many and they changed with such frequency. At least on my own I could be agile in my response to what my body was doing, and I was having new insights every day.
We need a new approach to healthcare
Managing my recovery on my own as I have, and my encounters with the health system before I started questioning what I believed, have given me an uncommon view of medical practice.
In my opinion, our approach to medicine is far too compartmentalised. Specialists focus narrowly on their area of expertise, ignoring other parts that fall outside of this. A neurologist (for example) is looking for a problem neurology can deal with. But the human body doesn’t work like this. It’s an interdependent system, everything related to everything else, not neatly partitioned with problems in one area having no impact on the rest. Holistic and alternative medicine knows this, but I think it’s crazy that it’s not the mainstream approach.
Because it is really hard to determine cause and effect in the body: x hurts because of y, this is happening due to that. A symptom is not a cause. It’s too easy to make assumptions, for healthcare professionals to go on what the textbooks say or what they’ve seen 90% of the time. Also, the threat of fungus as a pathogen doesn’t seem to be on everyone’s radar so much. It’s all viruses [hello Covid!] and bacteria.
I guess I’m saying we need more personalised medicine (which means more time, which means more investment – I know, I’m dreaming!).
Us as patients need to change how we think about health and medicine too, take more responsibility. I’m not on about Instagrammable ‘wellness’, optimisation of self as a lifestyle choice. It’s more about education and empowerment. Recognising the messages from within. Learning how your body works. I get the sense that most people (like I did) outsource responsibility for their own body. Like taking your car to a mechanic or your laptop to the IT people, take your body to the doctor and they will fix it.
I have found doctors can be more than willing to indulge this. There can be such a strong power imbalance in the doctor–patient relationship, and there’s often too much unnecessary intervention.
Of course, individual experience differs and my situation was unusual. I’m not anti-medicine and I’m certainly not anti-science, but I got sucked in and spat out by an indifferent health system that didn’t get it right, so I’ve learned to be cautious.
What do I do with this experience and new discoveries? I feel fortunate that I’ve had the chance to stop, examine, and sort out my health problems, rather than sliding into my later years with decreasing physical capabilities. I’ve discovered a new relationship with my body and have total confidence in its ability to look after itself – my body knows what to do without any intervention.
Now I’m healed (just about), I could carry on with enjoying my life and put this all behind me. In fact, I am going to do that.
But I also feel like I need to be vocal about this. I can’t be the only one; maybe blocked lymph caused by fungal overgrowth is happening to many people but the medical profession is getting it wrong. I see people on the street – mostly female, often young – dripping with extra flesh, and I wonder: is that actually lymphedema?
I know people with mysterious conditions like fibromyalgia and chronic fatigue, and I wonder. I see people walking with their feet turned out, and I wonder.
Candidiasis – the invasive whole body infection by the candida fungus – seems to be widely accepted as a thing in the alternative health community, but not in mainstream medicine. Lymphedema is very much a thing, particularly for cancer patients, but is it more widespread than that, playing a role in common conditions?
I’m not sure about whether to address my past health catastrophes or not: the MS diagnosis, the Avonex, the ISC. My reserves of mental fortitude are seriously depleted. But I do feel like it should be my mission to make an awareness of fungal overgrowth and lymphatic congestion more mainstream, have GPs consider it as a possibility.
I don’t know how. I guess it all starts with a story, and the next chapter has yet to be written.
(or perhaps TO BE CONTINUED…)