One of the most frustrating symptoms of ME is a pervasive form of cognitive dysfunction known commonly as ‘brain-fog’. In its milder form, brain-fog is comparable to the poor concentration and foggy-headedness a healthy person might experience during a cold; its severe form however is utterly debilitating.
Brain-fog typically affects memory, concentration, word-finding abilities and language-comprehension. This makes it more difficult for sufferers to learn new skills or retain information, and severely restricts their ability to study or work. The form and severity of cognitive dysfunction varies from person to person and from day to day. On a good day, I am able to concentrate in twenty minute bursts and this allows me to read, write, chat or watch TV spread out through the day; however short these sessions I am immeasurably grateful to be doing these things as many patients with severe ME cannot do them at all.
Brain-fog has affected me in very different ways throughout the course of my illness. In the early days it was relatively easy to hide my symptoms as I divided my time between several different groups of friends, colleagues and classmates who each only saw the tip of the iceberg. If someone happened to notice I’d put the TV remote in the freezer or left the house in my slippers I could usually pass it off as one of those scatter-brained moments we all fall prey to on isolated occasions. I was the only one aware of just how frequent and debilitating these incidents really were and I couldn’t help but wonder whether dementia could ever strike in a person so young.
I would struggle to follow through on even the simplest of tasks. Just making cups of tea became a cognitive nightmare as I’d forget to use a teabag, would omit to boil the kettle, or would fill the cup with water straight from the tap. Instead of milk I would use whatever refrigerated product was closest to hand. Yoghurt, juice and ketchup all made it into brews on a regular basis and caused quite a shock to whichever unlucky recipient happened to wind up with a mouthful of something unexpected. I ruined a good friend’s kettle once by adding milk and teabags, and boiling them instead of water. Thankfully she found it hilarious but her morning cup of coffee never tasted quite the same again.
At the most severe point of my illness there were times I lost the ability to understand spoken English and would forget my own name or the faces of my loved ones. Entire months of my life are missing from my memory but with hindsight I am grateful that at times of medical crisis I had so little comprehension where I was or what was happening.
Since my health began to stabilise, my cognitive abilities have improved to the point that have gradually resumed a few of the pursuits that I enjoyed when I was healthy. I still struggle to read a novel or watch a full-length film as my brain just cannot cope with the complexity of long plotlines but I treasure the ability to read poems and short-stories again after so many years.
I battle with symptoms of brain-fog each and every day and it is more likely to dictate what I do with my time than any other symptom. I struggle to engage in long-conversations, especially when they involve more than one other person, and in busy environments I cannot tune out background movement or noise. I spend chunks of every conversation desperately trying to catch the thread of what the other person is saying and have learned to simply smile and nod as there are only so many times you can ask someone to repeat themselves before they start to lose patience with you. My doctors, advocates and social workers send written records of every important consultation as I can rarely recall the details of discussions even if I appeared fully engaged at the time our meeting.
Everyday tasks such as dialling a phone or making a shopping list can be close to impossible. I forget basic information like my date of birth or the order of days in a week and it is extremely disconcerting to hear a voice on the end of the phone and realise you can no longer recall who you’ve phoned or why you are calling them. When brain-fog is particularly bad I lose the ability to read and write, and I struggle with even the simplest decisions such as whether to have toast or cereal for breakfast. Each successive option drives the previous one from my memory and when I tell the carers what I want them to do for me, I am often only repeating the last thing I remember them saying to me, whether or not it is actually what I wanted.
Despite my cognitive dysfunction I haven’t entirely lost my intellectual capacity; it simply takes far longer to achieve things now than it did before. I am still capable of many of the things that I used to do (this this blog is proof of that) but I have to accept that things that once took hours may now take months instead.
Twenty minutes here and twenty there may not seem like much but it soon adds up, and it never ceases to amaze me what it’s possible to achieve when you keep on chipping away at things.