A Year with Head Trauma, Mild Brain Injury

A repost of my blog from a couple of months ago, a year after being hit by a car in the Caribbean...

It’s my birthday and Facebook does the function that it is best at, getting birthday wishes from many nice people around the world.

I’ve had severe head trauma for the last year, confusingly called in the US a mild brain injury, and alas it’s not fixed yet. The symptoms are very random, sometimes I get very fatigued and need to sleep, sometimes I get head aches that can’t be touched by any combination of drugs, sometimes I just need to lie down and stare into space, sometimes I run out of breath and sometimes I’m entirely fine. Sometimes I go to sleep early, sometimes late, sometimes I get up early, sometimes late. Sometimes I can cycle out to ratho and go climbing for a few hours, other times I have trouble leaving the house.

My eyes still have double vision, they’ve been healing slowly which is annoying because it’ll still need surgery one day but they can’t give it yet incase it overcorrects. Maybe next month.

Time moves faster is the most curious symptom, it’s evening before I expect it’s afternoon, the months finish before they should and a year has gone by before I noticed it had.

The Department of Work and Pensions are supposed to refund my hospital costs from France but they have a presumably deliberately inefficient system which has taken a year to tell me I sent the wrong paperwork, I do wish the government would just be honest about not wanting to pay for it.

I’ve travelled for work to California, Copenhagen and Tallin, tiring but rewarding. The forest in Tallin is just like a fairy tale, the cargo ships of Oakland are impressive and Copenhagen just does the right thing when it comes to bikes. I’ve even visited the tourist traps in England of Long Eaton and Manchester. I love visiting friends around the world or having people visit me, thanks Paul, Chris, Ryan, Roman, Natalie and especially Beth who has done ever so much looking after me. My new employer expects to open an office in Barcelona soon which I’m really looking forward to, that’ll be a commute worth doing.

I’ve achieved a number of things this year. Starting with fixing the roof of my house, not a big achievement but interesting that I can do it when none of the 10 other owners of the building can (most of them running it as a commercial business). My first foreign trip involved organising KDE’s presence at FOSDEM, on the way home I actually collapsed on the train after running for a late connection but it felt good to be helping people. I spent a lot of time looking into a potential new site for my canoe club, that ended up with lying and incompetent politicians and civil servants but I did stop Scottish Canals from kicking us out our current building and moving us to the edge of the city by shouting at them, extra aggressiveness from head trauma coming in useful there maybe. I ran the biggest canoe slalom there has ever been in Scotland, that was too much. I changed employer, I reasoned this was easier than changing job as my old employer wanted me to, a good choice I think although the transitional details have been stressful from my old employer.

Targets for next year I think will be to get Kubuntu working well on tablets for work. And get back into running some canoe trips for leisure. I’ve recently started some driving under guidance again, it’s tiring so I need to be careful but I’m a careful sort. Weirdly the DVLA gave me the all clear to drive after a peripheral vision test - I have twice as much peripheral vision as before not less, the actual issue is reaction times which they don’t seem to care about. Mostly I need to take things easy, grab the maximum enjoyment I can and do more gentle exercise, I have a habit of doing none when I feel poor and doing too much when I feel good.

howtorecover.blogspot.co.uk/ How to Recover: Comebacks from Traumatic Brain Injury is a great blog I follow. Brainlash is a great book. I wish the neurologist had pointed me at these when I had my only appointment instead of an unhelpful “he’ll recover, I hope” letter. There’s not much can be done for head trauma but information to cope would be the obvious thing, it took me 10 months to find out that NHS Lothian even made their own useful leaflets on the topic. I’ve been referred to a rehabilitation consultant but I’ve not heard back from them and I don’t know what they can do anyway.

Now a couple of weeks of parties and gatherings but mostly I’ll be relaxing. If I seem unfriendly or disinterested at all, it’s just a normal symptom of head trauma, keep those birthday wishes coming it’s much appreciated. I’m looking forward to another year of randomness.

[brighton88]

I like your humour and determination

[Danslatete]

It sounds so much like i felt. The ehadaches were cruel, sometimes i would fall asleep after breakfast, wake up and have tea and sleep till the following morning then be awake for hours. I have the same problem with time too!

For me its all or nothing as i dont seem to feel the build up to being worn out, so i work vey hard at what im doing then drop, and then when i have recovered i start all over again!

I have had input from social work and brain injury re hab. It is not a 'fix' but it does give you useful tools to cope with everyday life.

My eyes are better now after lots of injections of botulism in the muscles at the back of the eye but i still get double vision when im 'brain tired' this is usually after i get the eye twiching (which im supposed to notice and rest).

Keep at it but try to learn to pace. Try to get help to plan and that makes it easier to pace. Im very disorganised and then i get flustered and tired, if i have help with planning im not so worn out.

Good Luck and keep recovering.

[Hidden]

One year is early days for recovery; mine occurred 46 years ago and my recovery is still ongoing, albeit very slowly. I now don't get headaches or get fatigued. The depressions are stil there but not as bad and I can control my tempers. I no longer stutter for words, my short term memory functions well except for Morse code which I have to use.

I noticed the first signs of recovery after five years, ten years on there were less effects and fifteen years on the stuttering for words had stopped. The short term memory was a bit stealthy; I don't really know when that came online as it is now.

I still have problems recognising amounts [change is a favourite for that with me] and I have issues with spatial appreciation - depth and distance but which I employ a variety of tricks to get around.

What is galling was the original enhanced libido after my accident; that became manageable for years but now its beginning to rear its ugly head again, which is a nuisance but controllable.

Mine was anything but 'mild'; unconscious for a month, massive trepanne and God knows how many pills to take after. I threw the lot away after two years [in 1969], no mindbenders for me - the effects? I seem to have been functioning nicely without them for the past 44 years although I don't drive for obvious reasons; the push bike just goes fine when the arthritic hip lets me ride.

Good luck with your recovery

[bytchy]

Thank goodness the sleepyness is a normal part of brain injury after a motorcycle accident ,,,,, almost 2yrs ago now but iv,e realised now it take time to accept xxx

[ricozoe]

its nice to hear that u ave achieved so much.i overdone it last few days so now gt the headache n tiredness.but after reading your story it gives me great hopefr my future. hope all goes well fr u .

[Alicedenham]

Keep going strong. You could ask your GP to refer you to the Exercise Referral Scheme in a local gym or swimming pool in your area. You get free sessions each week for three months. In my case helped improve oxygen flow to the brain and made my brain work but better. Something to consider on journey back to health

[Aelfwyn]

Wow, you've achieved a hell of a lot in the past year. Think I spent the two years after my TBI basically sitting in an armchair! It takes time to learn your new, constantly changing limits, I found. Tendency to push yourself too hard and then suffer the fallout sounds very familiar. Slowly learned to be a bit more patient with myself and to understand that, if you need to do something which will take a lot out of you, then you have to factor in recovery time.

One year is early days. You have a fantastic attitude and things will get better for you. I suffered my TBI in France and my GP back here in Scotland had no idea how to deal with it. It took me 9 months to get a referral to a neurologist. Headway was my lifeline, I was close to sinking till I stumbled across them. Thanks for your helpful links, and very best of luck with your continued recovery.

[SAMBS]

thats good news JR; Happy Birthday for whenever it is! Your post got my attention when I saw you mention France; Did your TBI happen when you were living here? If yours did, can you tell me what aftercare/support you received from the french medical system. I had mine 9 months ago while living in the SW.(spontaneous aneurysm and brain hemorrhage) and was hospitalized for 10 days before a taxi arrived to collect and return me alone, to an apartment lent to me short-term to give me some breathing space. he didn't want to know.

Sorry if I,m going on - some of the members will already have read my other post replies, over the year so will know some of this.

Since then I have not received some much needed support/rehabilitation from health system here or OH, and friends could not cope with my increasing emotional statehere. In May I fell and banged my head, then was told by my doctor I was having nervous breakdown. At urging of inlaw family I moved to the NW france, on 14 November, was involved in car accident 4 days later, when airbag went off in my face and my car written off. Still living alone, but now solated by distance from local village by 2.5 kms, with no transport except a taxi when needed. Life near inlaws (13kms) is not working as they can,t take my moods or depression. Perhaps the 2 other events were minor bi's since March contributing to my steadily worsening daily life, confusion, tiredness, shortterm memory loss, ears feel like I am in a pressurised container so balance and hearing problems, eyesight deteriorating with double vision, lack of concentration, no appetite. I also notice time passes much more quickly, Basically my life has just gone totally wrong since March and has happened this year As a pensioner - I used to think a young one at 66 - the stress of everything has totally got to me - I have lost a lot of weight, cant sleep or eat - have crashed 3 computers through lack of comprehending Windows8 or technical instructions. I lose all my passwords and I was in office administration for over 30 years. So if the french system helped you please let me know if you can, who, what and how. Being new to this area I dont know where to turn now and my limited french has failed me when I desperately need help in English language. A friend on an expat forum found and contacted a medical centre and a nurse came to visit, ' days later a doctor and he has put me on prozacfor depression - I,m sure I need different help to that - TBI doesn-nt seem to be recognized or understood out here as it seems to be in the UK; Sorry if I bored you all but feel Headway is my last resort....