The physical challenges of Multiple Sclerosis are noticeable enough but the cognitive issues are difficult to deal with and explain because they are invisible. Everyone can see a limp or a tremble but no one can see that your brain scrambled and thoughts fragmented. Writing these posts takes far longer than it used to. I still enjoy it, though, and it is a good exercise to keep the mind agile.
Like so many things in MS, stress makes it worse. Cue the remark ‘just avoid stress’. Well, yes, but avoid normal life? No, thanks. And with normal life comes normal stress, some days worse than others. Worse with normal things that everyone deals with every day. But the impact of stress can aggravate MS issues. Physical and cognitive. As I said, the former are easy to see. The latter. Well, I’ll try to put them into words.
A Little History
I was always someone who could be looking out of the window, watching the birds flying around outside whilst I was working. A colleague once got annoyed when he assumed I was not listening as I was transfixed by some Great Tits flitting around a nest. He was surprised when I recited what he had been telling me. Later I could maintain five or six conversations at a time online. Handy when I was briefly a people manager! Things are different now.
MS and cognitive issues go very much together. Of course, it is never consistent. You could sit down two people with MS and get a completely different list of cognitive issues from the pair of them. I will just focus on the main ones for me. Not scientifically. Just the main ones.
Forgetfulness
Last week I saw a friend, someone who I have known for a good few years. I have known his wife for the same amount of time. The time came to bid farewell and the usual greetings to partners were passed on. But could I remember her name? No, just gone. He is an easy-going sort and just said the name for me. That was a relief! More embarrassingly I have forgotten the names of senior management at work. Not a problem except when I’m introducing them on a question and answer session! That is a little embarrassing.
It is not only names. I forget what I am talking about mid-sentence. This is usually accompanied by a lot of waffling whilst I try to retrace the memory of what I was talking about. Annoyingly, this happens quite often.
Concentration
I used to be able to focus very hard, study for hours on end or read a book in a few days. Now, it is quite hard work to concentrate to the end of a recipe in a cookbook and I need to keep looking back for every step and will miss a key point like… put the oven on. Reading is harder and I am very much a slow reader as written before. For reading a book this is no issue. The same for watching a film. But listening to someone or on a task at work. It becomes challenging.
Multitasking
One at a time! One at a time!
Speech and Conversation
Whenever I mention this my friends say they don’t notice. One reason is that I have a South-West English accent so I just sound drunk all the time anyway. The other reason is that I work hard on this. Concentrating very hard on the formation of words in the mouth. Except when I am drunk! People with MS do get drunk, quite cheap as well! Funnily enough this is less of an issue when speaking Dutch, probably because it is not my native tongue so I am concentrating a lot more on what I am saying. Though if someone swaps rapidly from Dutch to English or puts an English word in a Dutch sentence I am thrown.
The Lizard Brain Factor
I always refer to my mind as ‘My Lizard Brain’. That is not a good approximation as lizards are actually quite quick! Fast reflexes! But this is perhaps more the idea of the slow, lumbering tortoise or ancient dinosaur. What it specifically refers to is the ‘one day later factor’. I will be turning over a conversation in my mind and then suddenly! Eureka! That’s what they meant! I suddenly need to call the person and say! Answer their question! Suddenly say ‘of course your partner is welcome’. But that is not always practical. A side effect of concentration issues and one that I find very annoying.
Frustration
Actually it’s all pretty annoying. And frustrating. Tripping over words as you try to shove them out of your mouth! A bit of stress again. Stress makes it worse. Frustration, stress. I could wrap myself up in cotton wool and hide, right? I don’t want to do that. I like to be around other people. Of course, that will bring challenges.
The Reaction of Others
There are many issues and I will not go through them all in detail. I don’t want to write War and Peace and, anyway, that would mean concentrating a lot. Anything involving thinking, concentration, discussion and I struggle. My friends are fine with that but when dealing with those who don’t know me so well. Well, there is impatience. Combined with physical symptoms such as trembling and limping and you can feel quite… inadequate. And when someone speaks to you slowly, like you have problems understanding things. Patronisingly. Well, sorry. I get a bit p*ssed off!
Dealing With the Cognitive Sh*t
Cognitive issues are hard work because they cannot be seen and can be hard to deal with. There are methods. I now have a notepad on my phone with entries for every friend. It has, when I can’t remember them easily, the names of partners and relations. It also has my questions for them as I got fed up of forgetting them. People are getting used to me flicking the phone out and making sure I have covered everything. At work, colleagues are used to me sending long notes from meetings where I make sure all discussions and actions are captured. This is useful anyway!
Lots of cognitive issues and other ways of responding to them but, hey, my concentration is done. My brain is full! Just a small overview of the cognitive sh*t that comes with MS. And, partially at least, how I respond.