Bugger

Once again the sleepy morning brain cocks up on the co-ordination front.As I still have my faculties, unlike many survivors of brain trauma, I can observe my daily mess-ups with a kind of academic interest rather than getting too stressed about it. Of course that may change if I set fire to the kitchen, but for the moment it's light entertainment, like the presence of an Africa-shaped splodge in the centre of vision of my right eye. I used to document that here, as interestingly it changes colour, but decided to play down rather than attach too much importance to it. [It's brown today by the way].

I thought I'd say a bit about coping with an invisible condition, partly for those who do not understand (like my family), and partly for my own sake, as talking about things helps me understand how I feel about them.

Outwardly I look and act fine, although a little more quiet and dozy than previously, so most people treat me as fully recovered and my old self. This is the source of intense frustration as neither is true. I may never be the person I was, as looking at the online forums (fora?) for brain injury survivors (not sufferers - we're all clear on that), it seems that no-one has managed that, even years down the line. The thing that all agree on is that you have to come to terms with the new person you are, accept any limitations, and appreciate any positive changes it has brought. It's good to speak with people who know what it's like, either face to face at Neurosupport or via an online forum, as you can say absolutely anything and not be seen as attention-seeking, lazy or stupid.

Well-meaning able-minded people always say "Oh, I do that all the time!" when I mention a memory lapse or concentration problem, thinking to reassure and dismiss the phenomenon as normal. I want to shout "but it's not normal for me!" and IS a big deal, but just smile sweetly and let it pass. Another highly annoying thing is when people rush to fill a hesitation while I grope for a word, as I know I do need to work at it myself and practice retrieving vocabulary by the new neural pathways being painstakingly built by usage. This must be frustrating for stammerers too. Sometimes I try to avoid such hesitations by rehearsing a sentence before saying it, but either the appropriate moment has passed, or I forget what it was I wanted to say. It reminds me of this Two Ronnies sketch.

As different parts of the brain handle written and spoken language, I don't have this difficulty when writing things down,luckily. After communication, the most annoying deficit is in memory. This is similar to that suffered by very old people, who can remember detailed events of 30 years ago, but not what they had for breakfast. Short-term memory is affected and doesn't always become established as long-term unless I really work at it, and even then it's not guaranteed. It makes learning new things difficult, which I find devastating as my "thing" has always been to keep on discovering new things to learn about. I am constantly writing things down but losing the lists/scraps of paper/notebooks/pens. My new strategy is to enter notes into my phone, as the habit of always having that by me was ingrained last year when I broke my leg and was not very mobile. In fact having it to hand saved my life last August when the SAH happened.

Time lapses are another thing I've noticed. Sometimes I cannot work out the time-frame for events, so life seems to race by while I effectively stand still. I find it hard to differentiate between something which happened last month and yesterday. I might intend to do something next week but suddenly time seems to have jumped to the week after and I missed it. This makes planning very difficult. I'm trying to develop strategies for overcoming all these things, such as always putting keys etc in the same place, but this often breaks down if I have a lapse in concentration or if someone else tidies up (rare) or moves things (often) - the latter feels like being burgled on a daily basis and induces an intense feeling of helplessness. I like to talk about happy recent events and experiences as the more I do that the more the memory solidifies instead of drifting away. This is annoying for other people who've heard it before, but although I am sometimes aware I'm repeating myself, it is helping. For this reason, Blipping is invaluable.

To end with today's porridge fiasco, this is typical of what I class as the breakdown of automatic behaviour patterns. Anything which is so familiar that it can be done without conscious thought - and that is a great deal of the stuff we do every day - now goes wrong unless I actively concentrate on it and break it down into little steps, e.g. open the cupboard, get out the porridge, find a bowl, get the milk...etc etc. If just one of the steps is missed out it all goes wrong, as I find when I pour my tea into the kettle or into the sink because I've stopped concentrating. It's hardest when I'm tired or stressed, and needs as much concentration as fine needlework or a game of chess. That level of concentration cannot be sustained for long and leads to a unique form of exhaustion which I feel on a daily basis.

Well done if you've read to the end of this rather boring monologue. It's not meant to be a list of complaints but rather a way of explaining, mostly to myself, how life is now. It's not so bad, quite interesting if I view it dispassionately, and hey - I'm alive!

PS: I successfully made some more porridge, and added blueberries and sliced strawberries.