Notwithstanding all the physical limitations M.E. has placed on me, the effect it’s had on my brain is the toughest aspect to deal with. I used to be really clever and prided myself on my quick wit and extensive knowledge. I had an excellent memory, could win any argument, was interested in politics and economics, read voraciously and took delight in engaging with the world around me. And now I feel like I have dementia.
My M.E. came on gradually over several months. I caught one bug after another, started suffering from insomnia, felt fluey and my stamina disappeared, but the thing that stands out most from those early months (apart from the 10am vomiting) is the decline in my brain function. I can type 140 words a minute and as a Press Officer could knock out a press release in minutes, but once M.E. struck it would take me all morning just to write a single paragraph. I started to experience the world through a fog – nothing was clear and it felt like I’d been woken at 3am from a deep sleep, all fuzzy and confused and disorientated. I have felt that way every second of the 26 years since.
I started not being able to spell. I would agonize over whether the word “if” had one f or two and I noticed that although I had all the correct letters in a word they would be in the wrong order. I would also randomly add extra letters, “e” and “i” being particular favourites, so instead of writing “spelling” for example, I’d put “spelliing”. If I was on the computer for too long letters would start moving, dancing around the page like fireflies, and whole sentences would be coloured purple or lime green.
After I contracted meningitis and became severely affected by M.E. my brain function was scarily bad. My short term memory was almost non-existent, I developed a stammer which I’d never had before, I totally lost the ability to learn anything new (and still really struggle with that), reading became impossible (I still can’t read and miss books terribly), I had to count on my fingers as I could no longer do math and making simple decisions like what to eat for lunch was beyond me. Every thought, every expression was a monumental effort and the world was suddenly a scary, confusing, disorientating place to be.
After 14 years, when I finally started climbing out of the severe end of M.E. and into the moderate, I started re-engaging with the world and that’s when the effects the disease had had on my brain really became apparent. My sense of humour had done a bunk and I could no longer come back with witty one liners and a killing sense of irony. I could know someone for 5 years and still not remember their name, and if I saw someone I knew out of context (for example, randomly in the supermarket) I simply couldn’t place them at all – I knew I was supposed to know them, but just coulnd’t work out where I knew them from, which can be quite hurtful if the person is a relative! (I’m leaving the word coulnd’t as I spelt it, just to show the way in which I muddle letters up).
Reading is tortuous. My whole brain feels as if it’s stuffed with cotton wool and there just isn’t space for new information. On the plus side, if I do manage to read an article I can pick it up 2 months later and read it all over again, because I can’t remember reading it the first time around 😉 I get terribly muddled and often quite confused over the simplest of things, and it’s then I truly feel like a dementia patient and the world feels overwhelming.
I also have sensitivity issues. When I was severely affected I could only bare speech in whispers, often couldn’t stand daylight, being touched was acutely painful, I couldn’t cope with the TV or radio, and if someone slammed a car door out in the street I would have a seizure. Thankfully this has improved a lot, however I’m still not great with moving images (couldn’t possibly watch a tennis match or the Grand Prix), loud noises cause an explosion of nerve pain all over my body and movement, such as being in a car, makes my entire body buzz like I’m plugged in to the electric. My stammer has gone though, and I only slur my words when I’m particularly tired.
After donkeys years of apologising, calling myself “dippy” and “stupid”, blaming my poor memory on my hormones, and making excuses for my misbehaving brain I simply got fed up of blaming myself for being sick and made the decision to call a spade a spade. I have a brain injury. I don’t have an official diagnosis (in fact, no-one has ever evaluated my cognitive difficulties) but there is no other explanation for how M.E. and meningitis have affected me and this is now what I tell people. I also say that I am dyslexic. Again, I haven’t been evaluated but I have friends with dyslexia and their symptoms and mine are identical.
Like every other aspect of M.E. you can’t see my brain symptoms from looking at me, so unless I tell people how are they to know? Before I started talking about my brain injury people could be quite cruel – they would take the mickey out of my difficulties with concentration and get quite shirty when I forgot things, particularly conversations we’d had. However, once I started explaining that I had a brain injury they treated me very differently and I stopped apologising and feeling ashamed. Now, for example, if I meet someone new I will say to them “I have a mild brain injury, so if the next time I see you I act like we’ve never met before, please do tell me your name and remind me of where we met and it usually will jog my memory”. I’ve been amazed at how much that’s helped and how kind people can be once they are aware of my struggle.
When you go to the doctor as an M.E. patient they only ever ask about your body symptoms. No-one ever talks about the effect the disease has on your brain. I’ve had a brain scan, and an EEG, to rule out epilepsy because of my seizures but I’ve had zero cognition tests. It’s only when I sat in with my Dad who was being tested for Dementia and decided to try and answer the questions in my head for a bit of fun and he scored double what I did that I realized the full impact M.E. has had on my brain function. You’re asked to remember 4 simple words, like ball and dog, then the psychologist chats with you for a bit, then asks you to repeat the words back – I only ever managed 2 out of the 4. Another test is where you’re asked to say as many words beginning with a particular letter, for example P, in a minute. My Dad was phenomenal, scoring 19 while I got stuck at 7 Where I did do well were tests involving spatial awareness and problem solving, but anything to do with memory or concentration were disastrous. I would love to do the dementia test formerly to see how I would actually score.
The cognitive symptoms of M.E. are largely ignored and that we, as patients, call our problems ‘brain fog’ trivializes what can be a frightening and hugely debilitating issue. It enrages me when research focuses on ‘fatigue’ like that’s all there is to the disease, and ignores things like speech problems, seizures, sensitivity, confusion and often severe issues with memory and information processing. My brain has felt like that of a pensioner since I was in my twenties, and now I’m actually getting older my memory, in particular, is going from bad to even worse. I have no issue with calling my symptoms a brain injury and maybe if the medical profession did the same this aspect of M.E. would be taken more seriously.