What does M.E. Feel like?
When I was 17, I did World Challenge with our school. We went on an expedition to Mongolia. One day, we set out to climb two mountains, it was one big peak followed by a dip and then a second, smaller peak. The group was split into roles and those responsible for choosing our food rations made the mistake of selecting just two or three dry crackers per person for the journey. We also had very limited water and the trainer didn't check until it was too late. It took eighteen hours to ascend both and return. Some girls opted out of the second peak and waited for the others. Some couldn't make it down easily and I remember helping to carry someone down. At the bottom the group were too tired to continue and three of us trudged on to the camp to get help. I remember it took us a very long time to make the short distance, because we would take three steps and then our legs would give way and we would collapse and clamber up again and then the same thing would happen. At that point, I remember realising what it felt like to have reached the limit of my human capability - the point where the body won't go any further, God's window as it were, the precipice, the point at which there is no mind over matter, the true limit of human performance.
When I was in Ghana less than ten years later, in 2013, strolling along the beach with some friends, I ceased being able to walk. This time, I was the one being carried, I then lay down in the hotel, and I feel like I never fully got up again.
As it turned out, what I experienced in Mongolia wasn't the most exhausted a person can get, it wasn't really even that close. People have asked if I feel sleepy, but describing what M.E. feels like in some ways feels like trying to describe a new colour, one that you might not have seen before. In another sense, it's very relatable because the body borrows symptoms from colds, cancer (I have read that severe M.E. is akin to stage 4 cancer), hangovers and depression.
One time, lying on my grandma's grass in South Africa after an overnight flight, I said I felt like I'd done a 10k run, drunk a bottle of red wine and fallen asleep in the sun.
Sometimes my legs feel hollow, as if it isn't possible to take another step.
Sometimes loud noises pierce through me and reverberate around my ears and bright lights or fast moving images make me want to disappear into a black hole inside my head.
Frequently my throat throbs as if there's a little man inside blowing a balloon.
One time I tried running, I just tried to push through it, to get fit and see if I could break it and my heart almost burst and I had some sort of panic attack.
Sometimes after back to back meetings, by the last one, I can see people's lips moving and hear noise but I don't know what they are saying.
Often I feel like I've got a bad cold but without the blocked nose - a sore throat, headache, fish bowl head.
Oftentimes I feel stiff and creeky like an elderly person, old before my time.
Sometimes I experience a new sensation and wonder if there is something else wrong.
Often my head feels too heavy for my neck, like a melon balanced on a totem pole.
Often if I'm with friends, writing work emails or watching TV, I am distracted until later.
What took me to hospital first in Ghana was extreme, bursting, inexplicable chest pain.
Sometimes I dance and dance and just keep dancing, ignoring my heavy legs, I switch off from it all and tune into the music and talk loudly and borrow time from tomorrow.
Sometimes I feel almost normal.
When I first went to the hospital in Ghana, they said there was nothing wrong with me. Then they said I had cerebral malaria and that I might die. The heavy dose of anti-malarial medication probably really didn't help matters.
In the UK, doctors again said, "there's nothing wrong with you". What they mean is, "there's no presence of disease"; if you looked under a microscope you would see no parasites or cancerous cells.
Internalising that there's nothing wrong with you works up to a point. You manage to live in a make believe world where everything's fine and can learn to almost switch off from nagging physical sensations that barely leave you alone and suffer long periods of lying in bed finding ever new podcasts, TV shows to amuse yourself alongside lying like a vegetable and participating in normal life when you can. Over time improvement can be made.
But at the same time, the lie that there's nothing wrong with you is dangerous. I was left entirely at sea to cope alone without any medical or lifestyle advice. Thankfully at the time I ate healthily enough by normal standards, but I spent energy carelessly like an irresponsible young person with a credit card and no financial advice - a "spend now pay later" attitude. I would trash my body by doing whatever I wanted and only stopping when I couldn't move and would lie in bed for as long as it took to recharge. I just thought my body was being stupid, rather than trying to communicate with me, and I ignored it for as long as possible.
When I was eventually referred to a specialist clinic, I was invited to the M.E. unit at Sutton hospital. I found myself in a large room surrounded by sick people, some of whom were barely able to open their eyes, let alone sit up or hear what was being said. A PowerPoint presentation went over the possible 40 or so symptoms associated with the condition and they informed us there was nothing they could do and the possibility of getting better was unlikely. It was the kind of situation where, if I was able to, I would have run away.
I have been very patient until I reached a wall, and I can feel the frustration building. Four years seems like a long time to be locked in a body that doesn't work properly. I just want to climb out of my skin and swim, run and breathe free.
The life sciences purport that humans, like other animals, are organic algorithms. There's something clearly wrong with my algorithm and I need to fix it.
What I need is support and a careful rehabilitation programme with only the most gentle to digest foods and very limited activity with guidance on stress and wellbeing to coach me back to full strength. Every one of the body's seven systems* is depleted. What I really need is to understand more about energy...
*
https://en.m.wikipedia.org/wiki/List_of_systems_of_the_human_body
When I was in Ghana less than ten years later, in 2013, strolling along the beach with some friends, I ceased being able to walk. This time, I was the one being carried, I then lay down in the hotel, and I feel like I never fully got up again.
As it turned out, what I experienced in Mongolia wasn't the most exhausted a person can get, it wasn't really even that close. People have asked if I feel sleepy, but describing what M.E. feels like in some ways feels like trying to describe a new colour, one that you might not have seen before. In another sense, it's very relatable because the body borrows symptoms from colds, cancer (I have read that severe M.E. is akin to stage 4 cancer), hangovers and depression.
One time, lying on my grandma's grass in South Africa after an overnight flight, I said I felt like I'd done a 10k run, drunk a bottle of red wine and fallen asleep in the sun.
Sometimes my legs feel hollow, as if it isn't possible to take another step.
Sometimes loud noises pierce through me and reverberate around my ears and bright lights or fast moving images make me want to disappear into a black hole inside my head.
Frequently my throat throbs as if there's a little man inside blowing a balloon.
One time I tried running, I just tried to push through it, to get fit and see if I could break it and my heart almost burst and I had some sort of panic attack.
Sometimes after back to back meetings, by the last one, I can see people's lips moving and hear noise but I don't know what they are saying.
Often I feel like I've got a bad cold but without the blocked nose - a sore throat, headache, fish bowl head.
Oftentimes I feel stiff and creeky like an elderly person, old before my time.
Sometimes I experience a new sensation and wonder if there is something else wrong.
Often my head feels too heavy for my neck, like a melon balanced on a totem pole.
Often if I'm with friends, writing work emails or watching TV, I am distracted until later.
What took me to hospital first in Ghana was extreme, bursting, inexplicable chest pain.
Sometimes I dance and dance and just keep dancing, ignoring my heavy legs, I switch off from it all and tune into the music and talk loudly and borrow time from tomorrow.
Sometimes I feel almost normal.
When I first went to the hospital in Ghana, they said there was nothing wrong with me. Then they said I had cerebral malaria and that I might die. The heavy dose of anti-malarial medication probably really didn't help matters.
In the UK, doctors again said, "there's nothing wrong with you". What they mean is, "there's no presence of disease"; if you looked under a microscope you would see no parasites or cancerous cells.
Internalising that there's nothing wrong with you works up to a point. You manage to live in a make believe world where everything's fine and can learn to almost switch off from nagging physical sensations that barely leave you alone and suffer long periods of lying in bed finding ever new podcasts, TV shows to amuse yourself alongside lying like a vegetable and participating in normal life when you can. Over time improvement can be made.
But at the same time, the lie that there's nothing wrong with you is dangerous. I was left entirely at sea to cope alone without any medical or lifestyle advice. Thankfully at the time I ate healthily enough by normal standards, but I spent energy carelessly like an irresponsible young person with a credit card and no financial advice - a "spend now pay later" attitude. I would trash my body by doing whatever I wanted and only stopping when I couldn't move and would lie in bed for as long as it took to recharge. I just thought my body was being stupid, rather than trying to communicate with me, and I ignored it for as long as possible.
When I was eventually referred to a specialist clinic, I was invited to the M.E. unit at Sutton hospital. I found myself in a large room surrounded by sick people, some of whom were barely able to open their eyes, let alone sit up or hear what was being said. A PowerPoint presentation went over the possible 40 or so symptoms associated with the condition and they informed us there was nothing they could do and the possibility of getting better was unlikely. It was the kind of situation where, if I was able to, I would have run away.
I have been very patient until I reached a wall, and I can feel the frustration building. Four years seems like a long time to be locked in a body that doesn't work properly. I just want to climb out of my skin and swim, run and breathe free.
The life sciences purport that humans, like other animals, are organic algorithms. There's something clearly wrong with my algorithm and I need to fix it.
What I need is support and a careful rehabilitation programme with only the most gentle to digest foods and very limited activity with guidance on stress and wellbeing to coach me back to full strength. Every one of the body's seven systems* is depleted. What I really need is to understand more about energy...
*
https://en.m.wikipedia.org/wiki/List_of_systems_of_the_human_body
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