Some Things May Never be Quite Right
On this page I've highlighted some of the remaining consequences of my TBI. In a general sense, I consider myself to have made an entirely satisfactory recovery. The areas discussed below are simply a breakdown of matters which may be considered as unusual.
I don't feel discomfort or pain when it happens unexpectedly - it feels like I don't get any signals. However, if I directly inflict pain I do sense it. To test my observations, I once deliberately crushed my fingers with pliers - it hurt! I've articulated some of my unusual pain experiences below.
My taste sensation has gone. I can sometimes recognise what I'm eating from its texture, but without a visual cue, the taste is of no help.
Some people ask "Does nothing taste of anything?" My response is "Everything tastes of nothing." It's a subtle word play, but it describes more accurately the feeling I have when eating. I could take the negative approach of thinking nothing tastes nice, but I'd rather stick with the outcome that nothing tastes bad.
I feel full up very quickly. I can go a whole day without eating, then just one bite of a sandwich is enough to make me feel full. Finishing a sandwich or meal becomes a chore rather than an enjoyable experience.
My smell sensation is almost zero. I do not recognise toilet smells, perspiration smells or any kind of perfume fragrance.
Summer 2019 Update: While walking through a Manchester suburb, I smelt what I thought was dog excrement. I asked Ruth if this was the case, and she said "Yes", I was delighted :-)
My touch sensation is significantly impaired. I regularly fail to distinguish between wet and dry towels on the washing line. I have reduced left hand dexterity, manipulating coins in a purse is almost impossible with my left hand. Cutting fingernails on either hand with clippers is very clumsy. I have significantly impaired ability to write legibly with my right hand - I doubt I've signed my name the same twice in succession since my TBI.
When waking during the night, I am unable to determine whether I have had night sweats. After perhaps going to the bathroom, when I return to bed the sheets have a sensation of being soaking wet. There's no visual evidence of sweating and I don't feel any signs of being poorly, yet with the lights off the sheets feel cold and wet.
I have severe short-term memory deficiency, it affects me in almost everything I do, though I deal with it really well by being an avid note taker. Short-term memory deficiencies seem to drive lots of people crazy, but not me, as I have faith in my coping strategies. Many people often can't reconcile how they can remember events from their school years, but can't remember what they had set out to do that morning. I draw an analogy to far-sightedness, where people can read words on an advertising hoarding thirty metres away but can't read a restaurant menu in front of their eyes. I have learned that short-term memory and long-term memory is managed by different areas of the brain, which typically deteriorate at differing rates in normal life, or more rapidly following a TBI. I refuse to be frustrated by short-term memory problems: I either use coping strategies or deliberately avoid things which I know I will struggle with.
I used to be a keen fiction reader, however, following my TBI I needed to make notes of the characters / roles / relationships as I read each page. Reading became a chore, such that any pleasure was lost, so I simply stopped reading novels. I need to be selective about the films I choose to watch, as anything with more than a simple plot (such as a murder mystery) becomes so difficult to follow that enjoyment is lost.
At work, I couldn't remember people's names / job roles no matter how many times I was told them, I also couldn't recall new faces very well anymore.
I needed to take photos of where I'd parked the car at supermarkets in the early days after getting my driving licence back in 2017 - this limitation has now receded (2020).
Early Onset of Tiredness
Every day I become tired by early afternoon. I have learned that a twenty minute sleep / bed rest during the middle of the day (typically at 1PM) makes the world of difference. When I attempted to plough on regardless, I'd have an almost bed-bound evening. I discovered this coping strategy by chance, and it works well, so I stick to it religiously.
I used to be fantastic at finding my way around new places, typically when on holiday. It took me over a week in July 2017 to remember that the toilets in the new office building I was working at were a simple left when exiting the office door. I first became aware on a weekend break in York in 2016, when I went out in the day or evening and didn't walk too far, but I had no idea how to return to the hotel. It wasn't just a case of not knowing if it's the second or third left, I couldn't recall if my target destination was north, south east or west.
18th December 2017. I think I have developed the flu, my eyes are streaming, my throat is very sore, I feel lousy. In short - ace news! After going thirty months without a headache or a cold it feels great to have normal symptoms.
Limited Learning Capacity
In June 2018, three years post-TBI and one year after returning to professional employment, I attended a training course to learn new IT skills - Amazon Web Services (cloud technology). I spent four days studying hard and enjoyed the experience, yet at the end of each day my recollection of what I had newly learned was zero. Not unexpectedly, I failed the exam test, it was a new experience for me as I'd always been very skilled at learning new material and passing exams. Rather than become frustrated, I simply accepted that learning anything new is likely beyond me.
Positive Mental Attitude (PMA)
I've written lots on these web pages, but there's one person's story I found on www.brainline.org which I feel puts recovery into context far more succinctly and convincingly than anything I've written. You can view the entire article by following this link, from which I've taken the following paragraph:
"Finally, I want to share what I consider the thing that makes every pain-staking minute of recovery worthwhile. The silver lining, if you will, is ALL OF THE MOMENTS OF LIFE I didn’t miss out on thanks to my exceptional good fortune of surviving the odds."