Some Things May Always be "Wrong"
I don't feel discomfort or pain if it happens unexpectedly / through unawareness. It feels like I don't get any signals, however, if I directly inflict pain I do feel it. For example, I have tried crushing my fingers with pliers - it hurt! I've articulated some of my unusual pain experiences below.
I severely burned my leg from a red hot metal garden fire bin structure while cooking burgers. I didn't realise until I saw the burnt and scarred gash (6 inches long, a quarter inch wide and an eighth inch deep) down my calf a week or so later that I'd been burned. We determined the only way it could have happened was through brushing my leg against the fire bin.
I can be wearing shorts and walking Ronnie (our dog) through fields full of nettles. I may be distracted while throwing Ronnie a stick and after five minutes my legs are a hive of nettle stings.
I have received mosquito stings on holiday abroad and wasp stings in Britain without feeling anything. I only realise I've been bitten when the swelling / spot shows up on my skin.
I observed an irregularity in my groin despite feeling no discomfort, my doctor determined without any hesitation that I had a hernia.
I developed sepsis which was attributed to severe pneumonia, the only symptoms I felt were tiredness.
My taste sensation has gone. I ate hot chillies and seeds during a meal with a friend where I was solely concentrating on the conversation and I didn't realise I was consuming extremely spicy food. I can usually recognise what I am eating from its texture, but the taste is meaningless.
Some people ask "So, 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!
In 2018 I ate a deep fried Mars bar in Glasgow, I'm glad to say I didn't like it, the truth is that it was the texture / difficulty in swallowing which I struggled with, not the taste.
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.
I almost always wake up with a seemingly bad taste in my mouth, which I previously aleviated with mouthwash. That now relieves none of the bad taste symptoms, which leads me to believe it is not purely taste related.
The simple act of eating brings strong discomfort to my lips and to the roof of my mouth. Swallowing food is generally uncomfortable and I often need to use learned strategies, such as lowering my chin to my chest, to overcome the swallowing difficulties.
My smell sensation is almost zero. I do not recognise toilet smells, perspiration smells or any kind of perfume fragrance.
My touch sensation is impaired. I cannot 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 haven't signed my name the same twice in succession since my TBI.
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 anxiety results in me feeling compelled to do many things straight away, even when not practically sensible.
Short-term memory deficiencies seem to drive lots of people crazy, but not me since I have faith in my coping strategies. I draw an analogy to far-sightedness, where people accept they can read the words on an advertising hoarding 30 metres away but can't read the restaurant menu in front of their eyes. In this circumstance people simply pop on their reading glasses and cope with it. With short term-memory problems 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 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 any more than being unable to read a book without reading glasses.
I used to be an avid novel reader, however, I now needed to make notes of the characters / roles / relationships as I read on. It became such a chore that any pleasure from reading was lost, so I stopped altogether.
I need to selective about the films I choose to watch, as anything with a plot to follow (such as a murder mystery) becomes so difficult to follow that any enjoyment is lost.
I cannot remember people's names / job roles no matter how many times I am told them. I cannot recall new faces very well anymore.
I need to take photos of where I've parked the car at supermarkets.
Early Onset of Tiredness
I become tired very early in the day, which if I don't respect means I'd have an almost bed-bound evening. However, I have learned that just a twenty minute sleep during the middle of the day (typically at 1PM) makes the world of difference. I discovered this coping strategy by chance, it works, so I stick to it religiously.
I get much general anxiety, resulting in predicaments such as paranoia over wallet / phone whereabouts. I check, then re-check, followed by a further check. I try to convince myself that it's fine, but this doesn't bring me the satisfaction that I get from checking it. When I review draft emails before sending, I find significant mistakes, not that much in spelling or grammar, which I think is expected. I'll find things like saying future when I meant past, or singular when I meant multiple. Instinct may suggest they're mistakes anyone could make, but I find it time and again, on maybe 50% of emails. I would take photos on my phone of my key in the front door lock to re-assure me that I had locked the door when I went out, otherwise I'd have to march back to check it (I've done this many times).
Ruth and I had wanted to visit our family in Portugal, but were uncertain about how I would cope with flying. The solution was to buy cheap RyanAir return tickets to Dublin from Manchester airport (near home). We didn't even leave Dublin airport, but we had established that I wasn't likely to suffer an anxiety problem when travelling to Portugal.
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 several times in the day and 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.
I have what I could only call tingling sensations in my left fingers and in the roof of my mouth / lips, most often causing discomfort when eating. I tried about twenty acupuncture sessions in an attempt at overcoming the tingles, unfortunately it didn't relieve the sensations.
I used to experience headaches on a perhaps thrice daily basis, I no longer get headaches. I haven't had a single headache since the TBI, there's expectation this may be linked to my sensory deprivation.
Monday 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 nearly 3 years without a headache or a cold it feels great to have normal symptoms.
Limited Learning Capacity
In June 2018, 3 years post TBI and 1 year after returning to professional employment I attended a training course to learn new IT skills (Amazon cloud). I spent 4 days studying hard, yet at the end of each day my recollection of what we had done each day was zero, I expectedly failed the subsequent 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 post-TBI.
I've clearly written lots on these blog pages, but there's one person's story I found on 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 clicking on 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."