If you haven’t already done so then please read Part One by clicking this link:
When I was discharged from Trafford General hospital on 27th October 2007 I was full of confidence, I had done really well in hospital and thought that nothing had changed so in a few weeks life would returned to normal. However I was soon to learn how hospital was a false and safe environment where everything is planned and organised, where your needs are totally taken care of without you even realising. I remember feeling very confident that I could walk out of the front door and do pretty much anything I could do before, its not until that was put to the test that I got a shock.
The first time I remember experiencing such a shock was in fact whilst I was still in Trafford General Hospital, as I was getting nearer to being discharged the hospital staff allowed me out for a few hours at a time providing I was with my family (they didn’t just let me out to roam the streets in my PJs!). As a family we all went to the Trafford Centre, a massive shopping centre just a couple of miles away for a treat and a break from NHS food! Many would say that this is not a treat but when you had been in the same room for what felt like forever believe me it was a pretty awesome prospect!
Even though I was driven there as smoothly as possible it felt like being on the waltzers at a fairground blindfolded (because I’ve done that loads of times, honest!). I was so relieved to arrive at the destination, for the last 5 months I had been laid down on a bed and the fastest and furthest I had moved was being pushed in a wheelchair to the canteen. My organs hadn’t really moved for months then all of a sudden I was travelling at 30mph and going around corners for 5 miles, no wonder I felt ill!
Unfortunately that wasn’t the end of my sickness because the noise, the people, the colours, the wide open spaces (don’t forget id spent the majority of the last couple of months in a single room) hit me like a sledge hammer. I was faced with a lot of sights, sounds and smells I had been sheltered from for months all at once. The Trafford Centre is massive and the sheer size made me feel nautious, I had spent months in a building of small rooms with a maximum of 15 people in them. Suddenly without any warning I was in a huge hall filled with shops and eateries and hundreds of people of all shapes. This all hit me at once and I wasn’t eased into it at all, I went from a room of a few men in pyjamas and grey NHS staff to hundreds of people all ages, all ethnicities, male and female it was like a stimulation overload and the trip wasn’t as great as I hoped it would be!
I never realised that my fatigue was an issue because if I felt tired I would simply get in bed, my bed was never more than 20 metres away. I was in Neuro rehab following a program and I had routine, upon discharge I came out to nothing and as great as they were, my parents were thrown into the new dark confusing world of brain injury rehab. Brain Injury is one of the most specialised and least understood areas in medical science and we were were to face it armed with nothing except a few leaflets and an outpatient followup appointment in a couple of weeks. As much as I looked like the person I was before I had taken on a different personality which was to slowly reveal itself as a shock to everyone including myself.
Back in the real world fatigue wasn’t the only difference I noticed, my voice, my vision, my ability to think had all been affected. There have been so many differences to how I feel, most of them have been subtle and difficult to describe the way my body felt as a whole was just different! it was just like id traded a new car with a big petrol tank in for a 20 year old rusty car with 100,000 miles on the clock that did 5 miles per gallon. In many cases I didn’t realise what was wrong for a long time because of something that is difficult to explain to someone who has never had a brain injury. I was not able to think logically because the thing I use to think logically i.e. My Brain had been damaged. For example I have double vision, to read I would (and still do) close one eye (I’m doing it now!), it didn’t occur to me that there was anything wrong with my eyesight I just closed one eye and that became the norm so I didn’t really give it any thought.
My body somehow felt less responsive like any physical actions had a slight delay when I was walking down a street called Lower Mosley Street, by Bridgewater Hall in Manchester there is this stone like a giant pebble that I always used to run over the top of. Its something I had done hundreds of times but as I ran up to it I stopped, I suddenly felt really unsteady and had lost all confidence. The same thing happened when I went to leapfrog a gate in Scarborough, these are obviously not essential skills for adult life nor are they very mature but so what maturity isn’t really a quality of mine they were things I used to do often and with ease but could no longer.
It was becoming more clear that something was seriously wrong with me, I was always eager to show I hadn’t been affected and I started reading up on my condition (with one eye closed!). Whenever I read it was so energy consuming I could manage about a page, I would get headaches and would have to go to bed. The more I read the more interested I was the the more engaged I would become this meant the more exhausted I became! I would go to bed for half an hour and fall asleep then I wouldn’t sleep at night, I had really bad insomnia I never knew what day it was as one day just blended into the next. Things had most definitely changed, once a fan of loud music I now hated the noise! I remember describing being in a very loud room as like having a biscuit tin put over my head and having someone hit it with a wooden spoon! My head used to feel so weak, I was so scared of being hit in the head.
The regular visits I got in hospital, being the centre of attention all brought me happiness but this was very short lived, I was out in the real world now and that had all stopped. The more I read up on my condition, (inbetween sleeps through one eye like a crazy pirate with a short attention span) the more I realised how serious it was and the implications it would have on the rest of my life the worse I felt. I was so tired all the time but I couldn’t sleep, this caused me stop looking after myself as much, in the mornings I only brushed my teeth I was too tired to do anything else.
It is very normal though to feel depressed after a traumatic brain injury, initially though I was totally unaware and totally unstressed about what it might mean for my future. The more I learnt about it however the worse I felt, you can get through most things as long as you know it will be alright in the end! Learning this wasn’t necessarily the case, hit me pretty hard. I looked for reassurance, I just wanted someone to say it would all be over after a particular time, I would seek the assurance of medical professionals “it will be alright soon right… right!?”. It was like Jeremy Paxman trying to get an answer to of a politician! Just like so often happens in politics I never actually got a straight answer. All I seemed to get was what seemed like ‘if you work really really hard for a long time then you might learn to manage your problems and learn techniques and strategies… that sounded crap! I wanted a pill, an instant fix! Over time I have come to terms with this, I’ve learned to love strategies and that they were totally right but at the time it was not what I wanted to hear!
I became obsessed with this book I had ‘Head Injury: A Practical Guide by Trevor Powell’ its brilliant and very much recommended. I was learning not the sugar coated truth but the truth about my condition and I couldn’t handle it! I became very down indeed and in fact was diagnosed by a professor of neurology as clinically depressed, now whether I was clinically depressed or not I don’t know but my life certainly wasn’t what I would describe as a ‘right laugh!’.
Oh and whilst I’m on the subject! If you know someone going through a difficult time, don’t try to make them feel better by pointing out others who are worse off! I had stories pointed out in newspapers about soldiers who had been horrifically injured at war in Afghanistan. This does not work! Saying “look at this soldier, he lost both his legs and both his arms in battle does not cheer a depressed person up! It works about as well as petrol does at putting out a fire
Bizarrely this period of depression should be met with rejoice! Don’t tell them you’re happy that they’re sad because thats more petrol for the fire but be (quietly) pleased that they have begun the healing process. To become sad I had to read and most importantly use my brain, this meant I had started the healing process. Before you can make any progress you must first go through this dip in mood. I’d started to use my brain again, like starting up an old car again that had been left in a garage for a few years, it will never be returned to past glory and all the features might never work. Maybe the heaters are broken or the boot lid doesn’t shut properly but hey at least it drivess!
This stage is a difficult stage but it does mean you’re starting to get better, if you want to know when or how much better you will get then I’m afraid you will always get a politician’s answer. The truth is that its too complicated and they can’t tell you what they don’t know. I’m not going to lie, its really hard, really trying and its a long road that I’ve been on now for 11 years. I haven’t recovered completely but neither have I stopped healing. I was in Manchester the other day and just for a laugh I ran over that big pebble on Lower Mosley Street, maybe not with the same confidence as in 2006 but I can still do it. Things change after a brain injury, people have said to me that I can do anything! Thats not true but you’ll be surprised what you can still do, you just have to do things a little differently! Best thing to do is keep your spirits up, its a marathon not a sprint but the worst thing you can do is give up!
If you can relate then please leave me a comment below, if you haven’t already then please like my page on Facebook ‘Brain Injury Brooke’ and tag anyone you think it may help! x