So I have been a bit quiet on my blog at the moment as nothing has really compelled me to share my experiences. Well quite a lot has but that’s for another day!
Oddly enough I have been ‘managing’ and to be perfectly honest life at the moment could almost be classified as ‘normal’. This is when I realised I had something to write about! Normal, that is not a word I have used a lot recently!
So why is normal such as alien concept? This has baffled me but it’s because my normal now is not the same as my normal four years ago. I cling on to my ‘norm’ from before my injury and so everything now seems different. I push myself to enjoy my old norms and can often trip up. I am having to realise that I am normal for me now. I need to get to know the new me which appears to surprise me on a daily basis. I make myself laugh sometimes as I am starting to find myself quite interesting ( if I do say so myself!). I am also seeing things that I need to do differently and understanding why I do things. I am slowly learning to manage ‘me’ and am embracing rather than resisting changes.
The main thing I am coming to terms with is that I am normal (well I’m sure there maybe be a couple of objections to this view) . When I walk into a room I am Tamsyn now. I think when I walk into a room I am Tamsyn with a brain injury. In reality this is just me now. I am still learning every day but that’s becoming the norm rather than the focus .
Well, this is a bit of a surprise, writing a blog post about a trip to the gym! Carer No 2 booked me up for an induction so I was commited! There was a certain amount of grumpiness attached to this on my behalf.
It wasn’t a fantastic start. Attempting to put trainers on ( bending is a bit of an issue!) let alone walk in them. Frustratingly balance is often a problem with brain injury and walking in these trainers felt like I was trying to mountaineer across a field of jelly. After a bit of practice I was however off and walking.
Considering four years ago I couldn’t walk it was quite exciting to get on a treadmill. I had a handle to hold so I could balance and when I got going, the feeling of my muscles actually working was amazing. They also really ached but it was a good ache and an ache I haven’t felt in a long time. I managed 15 minutes, walked 1.3km and loved it.
In true Tam style I obviously had a couple of mini dramas. Firstly it is really quite difficult to pull down your top that is slowly riding up when you needed to hang on for dear life. Secondly after the workout I had to get off the treadmill. My damaged cerebellum was obviously incredibly cross at this new found activity and I could easily have been mistaken for someone stumbling out of a nightclub at 3am. I think I’ll have to rule out the opportunity of meeting the future love of my life at the gym!
The best thing about this fitness lark I have discovered is that you can don your gym clothes at a seconds notice and look relatively okay stepping out. It’s a revelation! A no make up, comfortable shoe, elastic waistband outfit and no one gives you a second look. I’m beginning to like this gym business! x
Tiredness is such a useless word in the world of neurology. It most likely fulfils the criteria for a new addition to the Oxford dictionary. A new word needs to be invented that summarises that sometimes with a neurological disorder you feel absolutely ridiciously, physically, mentally, subconsciously and consciously completely exhausted but not to the point that you can just crumble into a million pieces but to the point were you don’t know what mood you are in, you potentially will laugh or cry inappropriately, you absolutely cannot be bothered to think anymore, fun things seem like too much effort, you are too tired to function but that’s all well and good because frankly you just need to get on with it. This comes with a free topping that there isn’t a pill you can pop to manage it. Recovery is not a choice it just likes to play hide and seek and if you don’t find it it will find you and so the cycle starts again.
A person with a brain injury can feel like this after even the simplest of tasks. They will still function and it won’t be hugely visible and they will hide it. Tolerance is a virtue but unfortunately it is non negotiable for all parties, obviously often very much easier said rather than done!
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The amazing Prince Harry is pushing a campaign to make people aware of invisible injuries that have occurred to servicemen in active service. He mainly focuses on mental illness but raises a very important point. Unseen covers an umbrella of conditions but highlights that clearly invisable conditions are often ignored or forgotten as they are in fact unseen.
This is probably one of the hardest things to overcome with a brain injury. Looking relatively normal it is very easy to oversee this. One could write an essay on the subject but one angle that has been causing me greatest concern is how do you explain you have a brain injury when meeting a new person? Going on first impressions you’d probably be automatically assumed as the weakest link in a game show and thankfully Gladiators no longer exists as this is unlikely to be ones strongest skill set. Stick with me though, there is a light at the end of this tunnel.
When I meet new people I am automatically compelled to tell them about my injury. I immediately worry mainly that they will think I am a, drunk ( often in the middle of the day!) and b, a bit odd as I obviously come across as a babbling mad person. In reality it appears that others rarely think these things; and many say they wouldn’t be able to tell immediately that I had a problem. Surely if this is the case I shouldn’t have to tell people? I do however need people to know that I may struggle with certain things and no it’s not okay to kick a football around my head. This is a juggling act of extremely random proportions.
The conclusion I’d imagine is that one must be open about their condition. This is obviously much harder to put into practice. Being open raises awareness of the conditions hopefully therefore gaining greater acceptance for invisible injuries. In reality though, as Prince Harry expressed , being open about invisible conditions can carry stigma particularly in areas such as the military. This problem however radiates much further. Imagine trying to explain you had a brain injury on a dating site. I can’t imagine they would come flocking if that was your opening line. It’s probably also wise to avoid the ones who do solely on that information; but this is one of many examples of a brain injury interfering with normal life.
So, we as brain injury suffers need to do some work on our pschyce. It is ridiculously hard work living with a brain injury and so anyone who wants to reject you based solely on that statement has the right too but we do not need to be affected by this. We have gone through an awful lot to get where we are and so that needs to be celebrated. It is not your job to work harder making yourself accepted because you have already shown true spirit in recovery and survival. All obstacles in life are relative and we cannot put a measure on someone’s struggle. We can however make do and mend and focusing on this lights further the fighting spirit. Thankfully normal does not exist and so even though we may venture into perceived randomness, in reality it’s very rarely a big deal.
This is my favourite phrase at the moment. It seems to vent my frustrations perfectly. I quite like it as it is a seemingly inoffensive way to say something that would probably sit higher on the offensive scale.
To get back to the issue in hand, I have this week had to deal with confrontation in a very public way. Normally (before said brain injury) I took no prisoners and was an obvious taurian. The events on Tuesday afternoon however showed how a brain injury can leave you not knowing how to or being able to react.
In a nutshell an extremely aggressive woman wrongly accused my car of blocking teachers trying to leave the school playground. At the time I was in a parent -teacher conference meeting my daughter’s new teacher. Normally I would have fought my corner and stood my ground but I didn’t. I apologised and went to try and resolve the situation. When I got to the car park after a very slow amble, no one was blocked in and the car park was virtually empty. No dramas occurring. I will at this point set the scene that I was walking to the carpark like I had all the time in the world. Objectively this may have been perseverd as if I couldn’t give a monkeys. I look normal so no one would automatically suspect I had any difficulties.
My ‘seriously’ was pushing to explode but instead when talking to our amazing caretaker I broke down in full, loud, wailing tears. The poor man must have thought the world had ended but in reality someone had been rude to me and I was literally having a breakdown on the spot.
On reflection of this experience everyone around me was really angry about the situation. I however found it incredibly hard to wonder why I had felt vulnerable and not demonstrated that I was furious that my meeting had been cut short and I had been treated unjustly.
This has shown me the complexities of having a brain injury. The fight or flight idea has merged into a under or over react situation and issues such as mobility, communication and cognitive factors do often overshadow the person hidden beneath that brain injury.
As a person with a brain injury I am exploring my new personality traits and so I just need to go with it and listen to what now works for me. I will probably get it wrong some of the time.
For carers of those with a brain injury you will probably not be able to predict how the cared for person will react in hostile situations. They are learning about themselves as much as you are learning about them. Just be prepared for that perception to occasionly have a bit of a wobble.
This blog is titled as Part 1 because no one yet knows how the ending turns out. My personality is a new one and I don’t really know a lot about it yet.
Over the last few months I have begun to become incredibly aware of my moods and feelings. I am sure if you ask Carer 1 or Carer 2 they would happily fill you in with my ups and downs ; but on a personal level I feel it is important to explain how having a brain injury has affected me.
Since acquiring my brain injury I feel like I am two different people in the same body. It feels like I have a control centre completely separate to myself that copes with me. It is a truly analytical, stubborn, hard going machine that basically narrates minute by minute what is happening. It’s ability to cope is amazing and it can be truly motivating but it does not cope well with being told it’s wrong, it does not let things go and it can sometimes be wholly inappropriate. The oddest thing about this situation however is that I am acutely aware of any actions and their use is almost exaggerated. It doesn’t let me feel too much about things because that would be too complicated but I know exactly how I am feeling. When I’m being grumpy I know full well I am grumpy and it can be almost entertaining to view your personality from afar but also incredibly frustrating to know you are grumpy and have to go with it.
In an ideal world one would be able to turn an emotion around easily but unfortunately it’s not that simple. It has even got to the point sometimes that I find it quite amusing as to how much of a bad mood I am in. Surely if I know I’m in a bad mood I can change it which is a logical action but logical appears to be a lost concept in the personality affected by a brain injury.
So now days I would describe myself as complicated. I am complicated because every thought and feeling is put through a long drawn out process of filtering which is incredibly tiring and confusing. At the same time it is fascinating and I intrigue myself as to how I come to decisions about things. Whilst this is going on,
the compliance department of this machine ensures one comes across reasonably normal and this is why the tiniest thing requires huge effort. I have been known to completely disengage midway through a conversation. I will absolutely never let something drop if I think I’m right and I have been known to have a complete emotional breakdown if multi tasking is needed. None of these examples are socially acceptable but coping mechanisms are muddled and I’m not always going to come out of it smelling like roses.
Everyday I am learning something new about my new personality. The problem lies that once that trait is identified it needs to be channeled accordingly. These things however do not happen in succession, if at all at times. A person with a brain injury doesn’t need to be excused from behaviours but an understanding around them may help to keep life on track.