Recovering and Dancing in the Kitchen with Joy

Yes, on this page there is going to be dancing in the kitchen with joy, but first:

Note to the beautiful soul reading this page: If you have a chronic condition, I would love you to be gentle to yourself. So, as this story is triggering, maybe you would like to read the short gentle version at the top of the page, and the long bit another day?

If you are here to get information to help you, here is the super short version and then a link to “Amari’s first steps to Recovery” list for you to begin.

The super short version – Brain Fog Friendly

“I made it. Recovery is possible. It’s been bad. But joy was at the end. And joy can be in the future for you too.”

The “First Steps” List for YOUR recovery journey

I have created a page especially to help you get started, and it links to free resources on this site, and helps you work out what to do and when.

Click here to read the First Steps to Recovery page

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If you want to read on about my recovery story, it’s all here below for you.

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Or you could give yourself a rest for getting this far and listen to this beautiful meditation I made for you to reduce symptoms and get a real restorative rest using this link

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Amari’s Recovery – The Long Version

The fatigue started in 2012,  and I didn’t know that it was connected to the other symptoms I’d had since I was a teenager; for example back pain, IBS, bone pains, depression, anxiety, headaches, and joint pain.

I didn’t know that when you put all these different issues together they are called ME or Chronic Fatigue Syndrome.

If we rewind a little further to when I was little… I had a fairly normal middle-class childhood in London – yes, there were some tummy aches and growing pains for me; I was a pretty sensitive kid. But we had a home, and we had clothes and food and friends and holidays.

Not bad at all… (I thought)

The problems really got going (aged 16) with sudden sharp back pain that put me on the floor, unable to move. It showed up on x-rays as a slipped disc, and so I added to my young life a lot of visits to all kinds of hospitals and back specialists.

This was accompanied by trying to cure my IBS which started around the same time. It was a life of trying to be a cool teenager, and hiding from my peers the endless appointments with doctors, therapists, osteopaths, chiropractors, physiotherapists, nutritionists, dieticians, colonic irrigation(ists), acupuncturists, and so on.

And nothing really helped. Symptoms would stay a few weeks and then ease up. New symptoms would appear. Another slew of visits to doctors and alternative healers.

The years passed this way. School, university, art school, jobs, friendships, partners. Then more jobs, postgrad degrees, more rolling symptoms, having a child, losing a parent. And so the decades rolled by.

I discovered all kinds of alternative and holistic healing; homeopathy and craniosacral therapy – these both alleviated symptoms for me a little better than the other modalities, but nothing provided a cure. And I didn’t know it was all linked.

I thought I was weak. So I tried to act tough. I rode a motorbike – with the leather and the tattoos and piercings… I was a stereotype of “looking tough”

Over the years my ME/CFS was getting gradually worse and by the time I was pushing forty, I couldn’t really go out in the evenings anymore due to the fatigue which was getting heavier each year.

I joked about it, saying it felt like I was in my eighties. I didn’t realise becoming middle-aged would feel so physically difficult.

I fought the symptoms by being ever more tough (on myself) – I went to the gym to work out every day, I took up martial arts, I did extreme diets for extreme health. Nothing was too hard. In fact, the harder it was, the more I felt like I was achieving something.

The body pains were by now excruciating, and the intensity of pain and the inability to sometimes use my arms now kept me going back to the hospital regularly asking for help.

When the x-rays came back clear on this particular issue, they told me it must be tendonitis. I received that special look when I said these joints were plaguing me for years though. They told me “No, no, tendonitis only lasts a few weeks.”

The special look that says “You’re one of those… maybe here for attention… maybe a hypochondriac”. So they sent me away, despondent and in pain, made to feel like somehow it was my fault and I was telling lies and wasting their precious time and resources.

I was such a fighter (and proud of it), so I kept on going with trying to live a full life. Back into the fight. Back into the ring! Back to the gym “No pain, no gain”. Achieve, achieve, achieve!

Then some cancer (melanoma). It didn’t really hurt – not compared to the other symptoms and issues. But people were very nice whilst I had hospital visits for that. Nurses in particular were incredibly kind and caring. So the cancer doctors did some surgery on me, and healing from surgery didn’t hurt much either.

Then the doctors said they wanted to do a series of exploratory surgeries to find more cancer in my body. They said they would cut places that had a high chance of leaving my face paralysed. The surgeries would be very high risk. But they advised me to do them, and that if I didn’t, then I would be letting cancer spread through my whole body and I would die… quite soon.

So, I decided to live out my remaining months or years out of a hospital, rather than in one, as I had a little boy and I wanted as much time as possible with him. I had another goal to achieve now: stay alive until my son turns sixteen.

Then the same doctors said all my cancer had cleared up, and that I was very lucky. They called it a kind of strange miracle.

This didn’t really make sense to me. But when the outcome is good, we don’t question it too much. I thought, “oh great, I can get back into the ring.”

Back into the fight. I began to work harder than ever before. I so desperately wanted to achieve my goals…

I had to make a feature film (I thought).

“I’m not getting any younger!” (I thought)

“Go, go, go”

And added to the intense work hours and the self-imposed pressure, there was then a new emotional stress – a heartbreak that made all previous heartbreaks in my life seem small in comparison. Even the death of one of my parents a few years before felt small in comparison to this.

But instead of finding a way to process out the emotions and the pain, I did the opposite; I worked harder. I buried myself in the demands of my chosen career. It became a prolonged and difficult few years.

I was “fighting the good fight”

On a diet of almost no sleep, 18 hour work days, continual pressure, in a toxic city, with never-ending demands on my attention – I turned away from myself and I kept this Mindbody system going with pure adrenaline and a kindof cold determination…

for YEARS.

I didn’t know then that there is a name for that cold ability to continue functioning. It felt like being disconnected from my own heart, from my own self. My mind seemed sharp and focussed, and I was able to keep working, to keep going, to keep pushing through. I wasn’t aware that I was totally numb. The name for it is “functional freeze”.

And then I caught Covid.

I know a lot of people believe a virus is their root cause, but I see it in my case more as the final blow. And I went down. I had been fighting for so long. I had been fighting everything for so long. And now I was out.

I couldn’t get up. I felt like concrete had been poured into my veins. The fatigue I had had before now seemed like a mild tiredness in comparison.

The body pains were joined by a new slate of symptoms, lung symptoms, weakness and sudden collapses, balance problems, light and sound sensitivity, sleep problems, internal tremors and vibrations, and something I hadn’t heard of before called brain fog.

So now, I didn’t just feel like an eighty year old physically, my cognitive abilities were very similar to someone with dementia. I couldn’t manage to send texts or understand words some days. People speaking to me made no sense or hurt my head so much I had to rest for days in quiet to recover.

LongCovid was what people were calling it, and for a period of three years I was mainly housebound and often bedbound. 

I tried a lot of doctors and a lot of different types of healers, shamans and bodyworkers.

I spent thousands and tens of thousands of pounds.

Now I had a new fight on my hands… (I thought)

Fighting to get back to health.

Now it felt like Life or Death.

And this time it did really feel like I was dying.

If I had to get to healing appointments, I would drag myself into a taxi and get there somehow. I had no idea what else to do. Nobody seemed to have any answers for me.

Well, they always said they did have the answer to start with. They said they could help. Or they said to come see them and “we’ll take it from there”. They said “do all these tests”. And they said “here’s what’s wrong with you”.

They said a lot of stuff… but none of it ever helped.

I learned about a new symptom, or a new “symptom grouping” if you like. The support groups, the doctors, and the CFS / ME department at the hospital introduced me to it. It’s called PEM, post exertional malaise.

PEM is the idea that after exerting yourself in any way at all, you get payback in symptoms if you do too much. “Doing” can be thinking about things, communicating, looking at screens, or just keeping your eyes open.

And they gave me their so-called solution for PEM too. It’s called Pacing. I started to pace, trying to count spoons (I officially became a “spoonie”)

It was like I had now been given additional maths homework to add to my troubles.

My life was now very occupied by creating charts of my own activities and trying to calculate scores.

(In case you are a relative of a “spoonie”, here is a quickie explanation of pacing for you: pacing systems include scoring out of a total amount of points or spoons each day. Like; does making a cup of herbal tea give 4 points/spoons of energy or 3 points/spoons. And you have to add up the number of points or spoons you use each day, to not go over your limit. Yes, this is what the doctors gave us as the answer to the worst pain and suffering any human could go through.)

And pacing did not help me get any better.

In fact I got worse, a lot worse.

Poor brain. Poor Mindbody system. I was going rapidly downhill.

I didn’t think it was linked at the time: I thought I was declining and that this was a logical physical deterioration.

But now, looking back, I realise it was more simple than that: Pacing made me get worse.

I was entirely focussing on symptoms. My life was getting smaller.

I did so many protocols, so many regimes, so many diets and plans – after all, I was such a high-achiever, and I had a history of getting up from so many different illnesses and conditions… I expected to figure out this “new illness” and get back in the ring.

Some of the doctors and health professionals re-traumatised me, as they gave me the message that I couldn’t trust my own judgement; that I should try harder, restrict more, and be more rigid…

For some reason, they always responded to me like I must be following their instructions incorrectly. I must be somehow always in the wrong (or else, their instructions would have made me recover).

Later in the journey, I learned how terrible it was to send this message to people with this condition.

Even from alternative healers who seemed to be on the side of people with Chronic Fatigue Syndrome, there was often a raised eyebrow or a series of sharp questions implying my lack of understanding of my own body when I said I was getting worse… “it must be some form of healing herx reaction”, they would say. “You really need to push yourself out of this”, they would say.

And I believed them.

After all, THEY were the experts, and who was I?

Just someone whose brain wouldn’t work, going around in circles with endless lists and clues that I couldn’t piece together in my poor head…

So I continued down the path of deterioration. 

I was really at my wit’s end, I guess… Rock bottom. And that’s exactly the right time for something new.

Life delivered it:

My recovery began when a very kind herbalist and self-proclaimed “white witch” called Pip made a suggestion. She was making herbal brews for me at that time and sending them to me by post, and one day she told me about a man she knew who had amazing machines in his house. She called him “the healer to the healers”, and she thought one of his machines might help me on a vibrational level.

So I began to see this kind 80 year old gentleman – Howard, a naturopath who had spent his life learning about holistic health and acquiring these unusual healing machines and tools, including red light lasers, pemf and infra-red mats, homeopathic and vibrational diagnostic machines, scanning tools and other instruments I had never seen before.

I do now believe that he helped me more with his care and kindness and his superlative knowledge than with the machines. But at the time, I believed in the machines, and they didn’t do me any harm. He was the first practitioner who believed everything I said. He never doubted anything. He was the FIRST one after so many.

We started releasing me from the rules in my head. I had a fairly severe eating disorder by this point. All the horrible regimes, the rigid protocols, the foods you mustn’t eat if you want to “get better” – all that I had been pushed into over the last several years.

One time he told me it was safe to eat an occasional ice cream. My brain felt like it was trying to explode when he said that. I had so many questions. What do you mean that it’s safe? Isn’t dairy bad? But sugar is the root of evil, right? And so on… It takes time, and it takes support to get the brain back into a place where we can see that this terrible condition isn’t caused by an occasional ice cream.

These conversations helped show me how I was backed into a corner in my thinking and my actions. I was scared to eat anything “bad” and I was terrified to do anything “wrong”.

Naturally, we don’t want to stop being healthy in our choices. But is it healthy to be terrified of many foods, even if they are occasional, and is it healthy to be so rigid that we become stuck?

It was so helpful to have someone caring on my side, but I still was housebound and sometimes bedbound…

I started using EFT – Emotional Freedom Technique, Tapping. This was the first time I had any introduction to the concept of “mindbody” work. I found EFT to be very helpful for dealing with each set of new symptoms, and I still use it to this day in coaching sessions with clients in the early part of their recovery as it is a gentle tool that is safe for most people. (note: I made a video to get you started with EFT )

Up until this point, every doctor, every alternative healer, every book and every documentary film or piece of research had pointed to a physical problem as the root cause of my condition.

Some of the facebook support groups and the ME/CFS community were all about physical treatments, physical causes and which supplement to try next.

And everyone was always talking about their symptoms.

Feeling like a good and helpful person, I would share my knowledge of which supplements helped which symptoms – those of us with chronic conditions become so educated in naturopathy: I knew a lot. I thought I was helping others. I thought they were helping me.

We were all stuck in the dark together. I didn’t know that then. Nothing made any sense to me until later, when I climbed out of the dark.

I worked with the lovely naturopath, Howard, for a few months.

I added Structured Rests to my day. And these rests would be meditative, so listening to things with my eyes closed; things that helped settle my nervous system.

I felt myself being a bit more soothed somehow, being able to have these rests, being able to eat different foods. It was better than before…

But still, I felt ill all the time. It was still a rollercoaster of symptoms, flare-ups and rests. The healing work was all focussed on the physical… I was coping with the situation of being housebound a bit better now that I had some support, but I wasn’t making much progress towards having any sort of life.

It looked like I wouldn’t ever be able to work again, or to travel, or to have a relationship or a social life… my days were constructed around rests. I couldn’t leave the house. I couldn’t walk more than a few steps. My life was designed to avoid crashes.

I was stuck. And worse; I still had no idea why I was so ill.

I did as much research as I could. One of the evils of this condition is your brain doesn’t work, but you have to become a detective anyway because nobody seems able to help.

I had seen something online about the many years of the European Encephalitis – a widespread sleeping sickness after the first world war and about the African sleeping sickness. I could see the similarities between these epidemics and this new outbreak of Longcovid and those who had suffered so many years with Myalgic Encephalitis…

I was trying to make headway with this research: I had been a bright person with a great academic record. So, even with brain fog I tried to study the illness. I found evidence of thousands and thousands of cases (hundreds of thousands perhaps) – they seemed the same or similar to my case. But where was the cure?

As I had never even heard of Mindbody health as a concept in my life up until finding emotional freedom technique (EFT), I didn’t pay it much attention… I would do a bit of EFT (also known as tapping), but I didn’t know there was more to Mindbody “stuff”.

I didn’t understand how this “Mindbody healing” would be any different to “holistic” healing – I mean, I thought that was what I had been doing all along. I thought that’s what Naturopathy was – they all call it holistic, so it sounded the same.

Well, turns out that Mindbody healing is a completely different thing to holistic healing. I had no idea! People used all these words in confused and confusing ways.

So, the next step to a real 100 percent recovery was to completely turn my attention to a different path, a different approach – to the Mindbody healing approach.

This meant I needed to come to understand the new approach I would be taking. This meant absorbing information somehow – ideally through reading… but I couldn’t read… and I could barely look at screens.

My brain fog was still horrendous and my symptoms were like a revolving buffet. A few days of this selection, then a few days or weeks of a different selection of symptoms – still not having a clue why. But I was going to have to do more research and get to the next stage.

People on support groups were talking about courses. I thought “they’re all mad. how can I do a course? how are they doing this if they are this sick? I can’t even read two sentences!!!”

But some people were making progress. So, I felt I had to somehow read. I didn’t know how I would manage to do it. My goal was to try to look at one sentence or two on good days only…

I took every step I could to make it easier for me – well to make the impossible become possible. I bought an old kindle e-reader, so that I could make the text really big, have a non-glare screen and not hurt my poor brain anymore (the screen of my ipad and phone really only gave me a couple of minutes before pain and brain shut down would happen).

And to my amazement, I found that I could actually read a bit more than a couple of sentences – even on “bad days” – so I was delighted with that!

The next piece for me was discovering a book called The Mind Body Prescription and coming to an understanding of TMS, The Mindbody Syndrome. This was so, so helpful at this moment in my healing journey.

TMS was first discovered by Doctor John E. Sarno in the 1980s and presented in a series of four books. (There’s an article about Understanding TMS in the Free Resources section of this website).

I purchased “The Mindbody Prescription” for kindle, and I saw my entire life explained to me in those pages. I saw my personality type, why I had always had so many health problems… I couldn’t believe this book existed and yet it had taken me so many years to hear of it.

And now, looking back, I realise it should be given to every single person with a chronic condition by the FIRST DOCTOR THEY VISIT. (strong hint, please get the amazon free sample of the book!)

I started using what I learned about TMS to inform my whole approach to recovering. These steps forward were about understanding, not doing.

I also took on some brilliant advice: I unfollowed the facebook support groups for ME/CFS. I stopped watching most television – no news, nothing scarey, nothing too stimulating, and I turned away from social media and screens almost entirely; I began to refocus all of my attention on hope.

I started watching a lot of recovery stories instead of looking up my symptoms, and I began to learn about joy as I overturned old beliefs… Really a process of “unbrainwashing” was happening.

Don’t get me wrong. It wasn’t a case of “cheering up” and it wasn’t that I had depression up to this point. It was about starting to change. It was about changing my habits, my thoughts, my beliefs, where my attention rested – it was a process of beginning to create new neural pathways and start to see everything differently.

And it also wasn’t “all in my head”. The physical side had to be addressed too.

I went from bedbound in a dark room, not being able to read one sentence in a book or watch television at all – to doing 40 minute walks every day and dancing around the kitchen in just a few weeks.

I just couldn’t believe the speed of my recovery.

I started to understand that the body is never separate from the mind (I don’t know why I thought it was – after all, my mind is inside my body – they are one), and the whole system needs to be addressed and regulated together.

I began to realise that brain training (I am referring to the concept in the book by Dr Sarno about how the Mindbody system works) had nothing to do with the invalidating notion that “it’s all in your head.” Nothing could be further from the truth than that idea.

And so, working on my beliefs, thoughts and switching away from pacing into a different way of self-care really were contributing to my improvement. Coming to an understanding of TMS was huge for me, and I was having fantastic breakthroughs.

There was still more ahead. There were several pieces to be addressed to get to that joyous 100% recovery. I was working on the physical side too, gently building up strength. It was all together a Mindbody experience.

I was no longer bedbound. There were tears of relief. There was joy.

I ate an ice cream.

Some people with a chronic condition may need help with releasing anxiety or coming to an understanding of TMS as the route out of the darkness. It is different for everyone.

I needed to address the emotional, mental, physical and spiritual parts of myself all together.

I found that once you begin the journey into this healing, life unfolds in a beautiful way. My life is so much better now than it ever was before.

I finally discovered that maybe I didn’t want to be in a fight anymore. Maybe I didn’t want to feel like I was always having to “get in the ring”. Maybe I would learn how to have a different and peaceful life instead… maybe it would be about happiness, love and sharing joy.

When I was bedbound for so long, I desperately wished for a way out. But I didn’t know then that a way out could be one that is in this lifetime, and full of peacefulness and happiness.

I only wish for you the same as I have – a life full of emotion and adventure, with the experience of pure joy and freedom.

Dancing in the kitchen is just the beginning.

Everything becomes possible.

We just have to begin.

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If you would like support on your own recovery journey, I would love to help you. So, please have a look at the Free Resources section of this website.

By the way, you’re doing amazingly.

💗 Is it time for a rest yet? 💗

If you read this whole page, it’s probably time to take it easy a little while, and also to reward yourself for all this hard work towards recovery – don’t you think?

Give yourself the message that you are worthy.