I really like puzzles. I particularly like puzzles that are about the human mind, behavior and health. That’s one of the reasons why I studied Psychology.
Having ME has been exactly the same as it is for anyone having ME on an hour by hour basis. Filled with pain, sickness, exhaustion and the rest.
However when my mind wakes up from brain fog and starts applying what it’s known of health and psychology it’s been an intriguing journey.
One of the things that has been most puzzling is the emotional side of having ME.
ME is an illness that is one enormous puzzle. Bits and pieces of research have been published to describe what is on the puzzle pieces, but the overall picture hasn’t been completed yet.
Since my diagnosis I have had emotional symptoms of ME that have been as pervasive and changing of my life as the physical symptoms.
The brain and emotional symptoms have come about since having ME and it’s not only that, my personality has changed as well.
I should probably be a bit clearer at this point – what I mean is it isn’t about the emotional impact of coming to terms with having a long term illness although yes, that’s been a biggie. That can be expected of anyone who is coping with the changes and impact a long term illness brings.
For me there’s a distinct difference between that part of my emotional life since being ill but a whole lotta something else that I’m sure is going on too.
You see, the encephalomyelitis in Myalgic Encephalomyelitis (or ME and yes, I copied and pasted that word rather than typing it twice) refers to a ‘disease or disorder of the brain.’ In case you want to know what Myalgia means, it means muscle pain or weakness.
So the diagnosis of ME means you have a disordered brain and muscle pain or weakness. But that’s a not good enough definition. It doesn’t describe what’s going on. It’s too generic and vague.
What’s really going on with this big thing called our emotional brain?
I arrived at having ME after 2 bouts of flu. During the second time I had a chest infection that was treated with 3 different types of antibiotics. I was never the same again. 6 months later I was diagnosed with Post Viral Fatigue Syndrome.
Then there was another 5 month gap between that and being diagnosed with MECFS. It was in those 5 months that my emotions went haywire. They stayed haywire for a long long time afterwards.
I asked myself, why would having ME make your emotions and personality go haywire..?
Well this is a long subject and one I won’t go into in this post in a lot of depth, honestly.It’d send you to sleep quicker than a long walk would straight afterwards. 😉
I decided that the most likely explanation was because of what happens in the brain after bacterial or viral infections. After a bacterial or viral infection the neurotransmitter Serotonin is depleted in the brain.
There’s research evidence that shows that a depletion of Serotonin in the brain can bring about problems with emotions and mood and mental well being.
If, as many people think, ME is a cluster of symptoms that is about an ongoing immunological response, as if your immune system can’t switch off, then could our bodies be constantly depleting Serotonin too.
That’s one in the eye for the Psycho-social model of ME right there! It would explain why I’ve experienced such a loading of anxiety, low capacity and energy for strong emotions of any spectrum, black moods if I am under pressure or stress and a whole host of other things besides.
It sounds like depression, but it didn’t feel like depression. It felt like something else. Like it was a part of still feeling so unwell all the time. It felt like my entire body and mind were sick.
The thing is, no-one actually knows for sure, because the research hasn’t been done to fit that piece into the big puzzle that is ME.
Until this morning
This morning the utterly determined, committed and expert US based medic Cort Johnson, published an article in his blog on Health Rising the research resource for CFS and ME.
The link to the article is in that sentence if you want to read it too.
The second I opened it, I sat up and took notice because there it was – the explanation I’d been mulling over, pondering, thinking about and considering ever since the start of having ME.
I need to read it a few more times to make sure I’ve got it, but it’s amazing. I feel like jumping up and down and shouting from the rooftops:
“See, see! That’s why we have so many emotional problems when we have ME! Sling your hook, Psycho-social model.”
There’s so much research that is filling in the gaps now. Thank goodness. It’s such an exciting time for anyone who’s tried to solve the puzzle that is ME.
© Lindy 2015