My recovery from ME/CFS - part three: The Cocktail

Outside of classroom physics, A causes B is not really a thing. In real life, it’s more like A plus some C plus a little bit of D plus an unexpected pinch of E causes B. This, and a whole lot of shaking.

Each person’s health cocktail is different. A huge part of the early days in my recovery from ME/CFS was to understand mine better. Ever since I can remember, I dealt with a host of inexplicable and varying symptoms in my body, from gut and stomach pain to nausea, rashes on my legs (early years) and my fingers (later years) and chronic back and neck pain. From severe monthly pain during my period, later diagnosed and treated as endometriosis to strange reactions to chlorine water (dizziness) or alcohol (instant headache). I had sensitivities to many foods (still can’t eat dairy) and my skin would break out if I ate too much sugar. Some of it was diagnosed as one thing or the other over the years, but with the exception of endometriosis and scoliosis, these were all functional diseases. Meaning, ‘We have no idea why you’re hurting.’

When stuff like that starts when you’re so young, of course you’re going to internalize it, as much as you’re trying to fight it (I certainly did). You can’t help but think that you’re probably just too sensitive or trying to get attention because you’re self-centered. You label yourself as weird and complicated so people know that you know that you’re not normal. In swimming lessons I felt like passing out because of the chlorine. When spending the night somewhere else I would often wake up with nausea. When eating something unusual I would get pain in my belly.

My ailments shifted over the years and a lot of times they were so bad that I desperately tried to get answers from specialists. Allergy tests, colonoscopy, back treatments, elimination diets, supplements, I tried it all, fully aware that I looked like a hypochondriac to some. Only I knew the amount of actual pain I was in that caused me to go to all those doctors. I hated the system and it didn’t treat me kindly very often, but not going felt like giving up.

Coming to terms with the fact that my severe illness now, which actually did have a name and a bio-medical explanation in the books, was maybe psychosomatic after all required me to look for the why’s in all this. Parts of that puzzle had been obvious for a few years, others had still remained hidden until now. Painfully slowly through my foggy, hurting head and while still often paralyzed in the recliner chair, I started to piece it together. Here’s the recipe I came up with:

MY HEALTH COCKTAIL: THE HERB GARDEN SOUR

• Base (the main spirit that defines the cocktail)
  50 ml Herbal Gin aka the previous events in my life. When I started trauma therapy in 2023, I felt the need to justify why I thought I needed it (‘It probably wasn’t real trauma, but …’). By now I know.

• Modifier (alters or complements the base flavor)
  20 ml Dry Vermouth aka my neurodivergence. Although it had been on the table since my childhood when I tested for an unusually high IQ, I only did official testing recently. I will probably share more about this along the way since women tend to go undiagnosed for much longer and both autism and adhd present very differently in women than men.

• Accent (adds brightness or punch)
  2 dashes celery bitters aka modern pressure cooker life in an economic system that had alienated me for many years. Working against the notion that I have to just ‘function’ in a specific way to be valuable in society is stressful - and the times we live in with all the stimuli and demands everywhere don’t help much either. I had phantasized about leaving ‘the system’ (whatever that means practically) many times.

• Sweet/Sour component (aiming for balance)
  20 ml fresh lemon juice and 15 ml honey sirup aka the exhausting attempt of trying to please every person, have no conflict and adjust my needs to what others deemed fitting for me.

• Garnish (a final sensory layer)
  a perfect sprig of rosemary or thyme aka my lifelong belief that I had to live up to my utmost potential to be truly happy. In other words, perfectionism.

Now, shake. Voilà, my delicate health. And no, I haven’t tried this recipe. I can now stomach alcohol better than I used to but I still rarely drink, so proceed at your own risk.

What I understood from the recovery stories I watched was that most people had had a similar cocktail to mine or at least some of the same ingredients, and while for many, ME/CFS had been the first severe illness, they had been emotionally stressed beforehand, sometimes from stuff dating back years and years. Like I said in a previous post, it doesn’t rule out a bio-chemical catalyst like an infection, but it was striking to me how similar all these people were, personality-wise.

I’m detailing this here because, as is so often the case with complex issues in our lives, my recovery from ME/CFS very quickly turned into something much bigger - resolving what caused it in the first place. I understood that ‘rushing’ (there is no rushing with ME/CFS) back to health couldn’t be the goal. Even if it would have worked, I would set myself up for the next big health scare a few years later. So instead of focusing on getting better, which puts too much pressure on the process anyway, I soon started to focus on understanding first.

For instance, here’s one key thing I learned: I had been living beyond my energetic means for most of my life, because I thought I could, I thought I had to or I didn’t even realize that that was a thing - boundaries. I had always perceived myself as being emotionally strong and able to do anything (including ‘acting normal’), which led to the false belief that nothing could really affect me if I didn’t want it to. Sure, I took away the positives even from experiences like being bullied in school, which is a key factor of resilience. I was never known to complain, engage in self-pity or perceive myself as ‘the victim’. But on the other hand, I also subjected myself to a lot of emotional neglect and abuse because I was ‘on a mission’ or I thought I could ‘handle it’. I completely underestimated how continued experiences of being ostracized, misunderstood and ridiculed had impacted my feeling of belonging in life, which is already delicate when you’re neurodivergent. And until the moment I finally realized that I was, in fact, autistic, I hadn’t been able to accept that every human encounter outside a very, very small inner circle, even with the ones I really like, takes a lot of energy from me.

Starting to be honest with myself about these things was a tremendous relief and I could feel how it impacted my recovery. No wonder my nervous system started associating everything with ‘danger’ and ‘stress’ - I had practically lived without emotional boundaries for most of my life. I used to be proud of that - that despite my IQ and otherness, I could ‘blend in’ if need be. Now I’m much more proud of my bravery not to do that anymore.

There was much, much more to understand, and for the trauma and emotional part of the puzzle, I relied on my therapist a lot. ME/CFS is an incredibly isolating experience, and like I said, beyond the secondary depression resulting from the illness, there is so often a complex emotional source for psychosomatic illness. It’s much safer and much more comforting to go on that journey with a seasoned guide. I’ve been in trauma therapy for two years and while I couldn’t see my therapist for two months during my worst, she has been with me again as soon as I could sit upright for longer (we meet online). The aforementioned Curable app also has great resources for that, but I think it’s vital to work with at least one professional when it comes to complex issues like that.

I could fill page after page with insights I had during the first few weeks, and I’ll surely share more along the way, but I’d like to dedicate the rest of the post to the somewhat more practical aspects of early recovery for me. As I said in the previous post, my baseline was very low and I could only do a little exercise or two a day sometimes (five minutes of Somatic Tracking, for instance, or a short meditation). I quickly learned that ‘the more the better’ doesn’t apply here anyway. It just takes time. A lot of time.

It’s hard to describe what recovery looks like. After starting to buy into the idea of psychosomatic illness, which conveyed hope concerning a potential recovery, I started to see my symptoms in a different light, which, along with some other strategies I already mentioned, initially helped me to do just a little more on a typical day despite the symptoms. Because now I didn’t have to fear to permanently worsen my condition or cause structural damage to my body.

With every little thing outside your baseline, it’s like you’re doing it for the first time. The nervous system is pretty good at spotting everything you haven’t done since you got sick, so it immediately spiked a little adrenalin when I tried something ‘new’. Like, walking around in the garden for a minute. Or, one of my early achievements, rolling the trash can to the side of the road (our driveway is 100 feet long). Not everything caused bad symptoms, but it always came with this flinch of ‘How is my body going to react?’. It’s since gotten much easier, the chunks of improvement have gotten much bigger and I’m so much less afraid of possible flare-ups, but it’s still there. That’s what you need patience for.

As I already mentioned, physical activity was the first to improve. With cognitive and social exertions, I got symptom feedback almost immediately - brain burn would ensue if I tried to read a few pages in a book or talk to someone for more than a few minutes. Physical activity caused a much more delayed response, which I initially felt was very sinister because it was harder to get a feel for it. But on the other hand, it allowed me to do things and still feel good afterwards, which helped me extend the range of activities quicker. I still remember one day (April or May) when I got up from the patio and decided to wash my car. It’s a very small car and it didn’t need a whole lot of washing but I couldn’t believe I was able to do that now. Fifteen minutes of bliss (with a lot of rest in between).

And then, eventually, a ‘relapse’. Those first months were full of them. I am still unsure if I even want to call it relapse, because that’s not actually what it is. Some recovery programs out there call it ‘adjustment period’, which I think describes it better. Because symptom flare-ups along the way, from everything I’ve read and watched since, are inevitable. I have yet to encounter someone who’s recovered who didn’t have them. Every time they happen, there’s your chance to react just a little more calmly, with a little more compassion and understanding.

Easier said than done, obviously. In the beginning, relapses felt like going straight back to square one, symptom wise. I started watching a recovery interview every single day during that time to remind me that it’s normal. Because it sure doesn’t feel normal. If I had to draw a curve with all improvements and relapses and my baseline in between, singular improvements certainly went up faster than my baseline and relapses remained deeply symptomatic for much longer, meaning that every time I got them, I felt like I had barely made any progress.

But I had. In April, about a month into my recovery, I was on a train for the first time in … however many months. It was surreal. It wasn’t replicable right away (meaning, it didn’t immediately turn into my baseline of ‘always safe’ activities), but it was possible. I started helping with food sometimes. I eventually went to buy a few things at the drugstore for myself (I hadn’t been in a store in three months or so). And then I was back in the recliner chair for a few days. And next time around, I could cook a little meal or work on a small thing in my tiny house. It was sometimes inconceivable to me how this, what I was doing, could possibly be the answer to a severe illness like this one, but it was working.

Ah, there is so much more to say but this post is already so long! More soon.