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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.

x

  

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.
  

Since starting this blog I have come across a range of injuries to people of different ages and I began wondering whether I was ‘lucky’ that mine happened at 29.

I suppose as with most things in life  there are pros and cons to everything but I could not help myself from feeling almost jealous of young children with brain injuries as they have not experienced ‘normality’ and so in theory may not feel the frustrations that those of us with previous life experience. 

However at the other end of the spectrum having a brain injury later in life means you remember what you can do and so you push yourself to regain that. I imagine it is extremely difficult for someone to learn something they have no comprehension of and therefore probably hugely lack motivation to achieve these things. I’m absolutely sure one cannot generalise about  this but objectively I think this is quite a rational concept.

I met an incredibly intelligent doctor last week and whilst discussing the recovery from a brain injury we joked that the best rehab is probably to have a young child to run after as you have to do it. On reflection it must be insanely difficult to motivate yourself for rehabilitation if you don’t have a direct purpose.

The emotional side of a brain injury is probably one of the most challenging areas. Until very recently I was extremely focused on me and how I had experienced things but then I came across a concept that on the day of your injury your friends and family lost the old you. This hit me like a bolt out of the blue because I realised that the old me had vanished and a new me is developing day by day. I look the same but practically everything else is new and loved ones have to learn these things good or bad. I can only imagine this is wierdly difficult.

Again this throws in the question of what age is best to have a brain injury. The very young will not have formed their true self so carers won’t get to see their original potential. The young will have shown their potential and so carers are left wondering what if?  The middle aged have lived and need to continue to live. They have probably influenced many people so the consequences of a brain injury are widespread. The elderly will most likely be written off as the are older and inevitably suffer deteriorating health. 

Above is a general tick box exercise putting individuals into boxes when in reality it is impossible to do so.  Brain injuries are first and foremost life changing for young and old, sufferers and carers. In my personal opinion I wish I had never had a brain injury. If I had been born with this condition I wouldn’t  have wanted to have been saved and I fully stand by my conviction that I would not want to be kept alive should further damage occur. This sounds ridiculously draconian but I think I have shifted from a pro lifer to a realist. 

Thankfully I do have an incredibly positive part of me that is actively looking  for any ‘new’skills that have occurred since the damage as apparently this can happen! I can pretty much guarantee olympic gymnast is off the cards but doing something amazing is a possibility. I am agetting on with it and learning to live with the damage as I have to and one day hope to want to. Thank god for family, good friends,  prosecco and salt and vinegar Pringles! 

Stay safe people, in conclusion it’s quite clear there’s never a good time to have a brain injury x

  

Yesterday, Tom the shunt decided to start malfunctioning. This pushes up the grumpiness scale massively as I get vertigo symptoms, my hearing does a u turn, the old incontinence issue reappears and life just gets that bit harder. I wish sometimes I could just go back to bed and wake up when it’s all over but that is obviously not very practical in the school holidays. Actually I really don’t enjoy going to bed as I can’t lie down so let’s change that to magically morph into a new person.  That sounds far more exciting.

After a good self talking to I was up and ready for the off. Talk about channeling ones issues into something positive, chores done and picnic packed. It was all going so well this art of distraction until the realisation that I have absolutely no idea what I have packed in the picnic, have I remembered everything for the beach, I have no idea if we even have towels and the dpd Man is running late with my delivery all of which has flicked the control freak switch and sent me into meltdown. Again one can’t visibly be seen to be having such a meltdown over trivial issues as it would look rather odd so the old brave face comes out again.

I am literally like a swan. Admit ally not particularly graceful but on the surface things are running a lot smoother than below. There is a lot of paddling going on to stay afloat which is frankly flipping hardwork.

The effort was all worth it as we had a super day. We met lots of nice interesting people, the weather and food was fAb and a impromptu chat with a good friend who literally had me belly laughing.

This scenario is an example of exactly why having a brain injury is so hard. Trivial things seem huge and fun days out are a challenge. One has to dig very deep to make the effort to try and it does get me thinking of how long I can continue to keep digging. At the moment it is getting harder to do that digging and I would like to say I hope I still can but in reality I have to as losing us not an option ( in the words of Chiari Warriors!).

  

Since I embarked on this journey of having a brain injury (not sure this trip would be overly popular on last minute.com!) my tastes in entertainment and intellectual stimulation have dramatically changed. Following a complicated plot in a film or book is beginning to be nigh on impossible these days. This is a bit of a worry as I belong to two bookclubs and would really miss the wine ummm sorry the intellectual chat about the plot.

One thing that hasn’t changed though is my intelligence. Mensa haven’t been in touch yet but I do still have a brain and I am actually quite bright if I do say so myself. It is the most frustrating thing in the world when people assume your intelligence went out the window with the rest of the damage. Yes I admit I do get things muddled at times . I am blond and from Essex so I put that down to my roots. I may even go to the point that I know more these days as I enjoy non fiction and documentarys over sci Fi etc. You would be taking a huge risk putting me on your quiz team but I am full of surprises! 

A very funny experience (for me and not my mum) was when she was in hospital this year. She is obviously no spring chicken but there is a few years left in her yet.  Mum was labeled as an elderly person who was slow to understand so they would talk to her very slowly and loudly in very basic language. Whilst quite amusing to watch this does introduce a serious point that because someone is labeled ie disabled, elderly etc it does not mean they have necessarily lost their ability to think.

It would be lovely to get away with murder (obviously only in the literary sense!) and have the excuse that I have a brain injury but I do still have my marbles. They may not always roll in the right direction and yes there are a couple missing but I am made of solid stuff so am not to be underestimated x

  

I think we can all agree that carers (paid and unpaid) do an amazing job and allow people to continue to function when in need. But it’s not all a bed of roses!

One could write a novel on care work and it’s issues so this is just a snapshot of how today has gone so far!

I honestly wish I had a Tshirt with a disclaimer on saying that ‘today I am being cared for. I hereby disclaim any responsibility for things and standards that are important to me as apparently they are not important and I am having to do things the way my carer wants!’.

This is obviously a snapshot of a day in the life of a functioning 32 year old with a brain injury but still a valuable observation.

Why when you are cared does one quite often have to compromise and lower ones personal standards. Why do you have to walk on eggshells around your carer. Why do you have to put up with huffing and puffing, horribleness and being made to feel like a nuisance.

How often do I hear that I am so lucky to be cared for! I’m not sure I would use the word ‘lucky’ but I can understand what people mean. To be perfectly honest swimming with great white sharks seems more appealing at times but one has to make the best of a situation. 

  
The care roles have been reversed at times and I find myself falling into all the same traps. Its a trying thing to do but everyone will need caring for at some point. The old concept of treat others how you wish to be treated is a key caring mantra.

Caring is a tough job but being cared for is often a lot more difficult. There’s always two sides to every story.

Now to turn that frown upside down and carry on…….

  

My new barometer is up and working. Am incredibly excited!

I imagine you are thinking, ‘ah bless she doesn’t get out much!’ But it really is!

I have a shunt called Tom in my head that helps to stop too much swelling. If there is too much or too little pressure my neurological symptoms worsen dramatically. 

It was named Tom in an attempt to explain to my then 3 year old why Mummy had to go into hospital and that we have to be careful so Tom doesn’t get grumpy. This has quite obviously caused great confusion to many who have congratulated me on my impending arrival when Esme talks about Tom in mummy’s tummy! 

Just to add to the excitement of Tom I can actually hear fluid draining in my head yuk  and am very susceptible to static shocks. Much to the amusement of my  darling child who finds it hilarious to rub balloons on her head to increase static and then touch me, giving me a shock. I mean honestly, as if I don’t have enough to contend with! 

Tom has a mind of his own and is very temperamental. One of the things he is very stroppy about is atmospheric pressure. So there is the exciting part, I am now able to compare shunt performance with weather patterns. This is of course only for my information and unfortunately will not be publishing any clinical data in case anyone was wondering.

Okay I admit it,  you were right I do need to get out more 😉

  

My new (and essential) mantra in life is to make things as easy as possible. I do this not because I’m being lazy but because everyday simple tasks can actually be very difficult. When things are difficult one becomes reluctant to do them, frustrated and confidence suffers. So what is the solution?

This is going to be a new part of the blog. I will identify products/ideas/pure acts of genius that can make daily living a little easier. Unfortunately I think we will always have to dig deep in order to push ourselves but maybe sometimes there could be a little helping hand 😃

The Folding Cart

When I first saw this I literally got butterflies. I will at this point fully accept the idea that I do need to get out more but let me explain….

How much easier would this make a day out at the park/beach with the kids. It holds up to 70kg which happily covers your camping chairs, picnic blanket, cool box, wind break, buckets and spades, kitchen sink etc. No more bags falling off shoulders or battling with the kids to carry stuff. I actually think this may mean that you can arrive for a day trip actually feeling quite relaxed.

Brain injury people just imagine you wouldn’t have to compromise your balance by trying to remain upright while lugging a windbreak across an uneven surface. Everything is kept together so you don’t have to worry about dropping things. You can take everything you need to, no more sacrificing that comfy camping chair because you can’t carry it.

Carer 1 loves this on a practical and sensible level, Carer 2 is very cool and loves the idea. The care team love this concept so everyone’s a winner. 

What would you use yours for ?

Please visit Airs and Graces site at http://www.airsandgracesuk.com. The lovely Mel runs this family business alongside designing the very cool ‘Picnic Porter’. Take a look for other great ideas xx