Following on from being wildly positive and deciding not to rollover some bright spark came up with the suggestion of a personal trainer. Apparently the idea is to optimise what I can do!
At this point it is probably wise to revisit the points that firstly remaining upright is a daily struggle and secondly brain shunts are affected by the weather let alone exertion. However a brave sole has taken me on and even predicts some level of success.
We did have a conversation about core strength. I tried and am still trying to convince him I have a core of steel under the lets call them insulation layers. I keep myself upright everyday with my core but there are definitely more core muscles than I had originally thought. Things that were difficult before had now become difficult but painful (in the most positive light of course).
So, the first session has happened. It was incredibly nerve wracking and I had no idea how someone improves someone’s mobility when every step is unpredictable. Well, all I can say is the next morning I felt muscles that I never knew existed. I can now see why doing nothing is never a good idea. It felt good though and reluctantly but in the most optimistic mindset I had booked a course.
I feel a journey coming on here, let’s hope it’s not too bumpy….
So, I have been on a break from my blog lately due to rather inconvenient weeks in hospital and general life being a bit hard. Nothing massively serious just random inconvienences like getting up every day and making it through the day which genuinely seems to be getting harder. Who knew it was so easy to fall over nothing!
Back to the title of my blog! Yes it’s true, apparently I am not going to get better and am likely to deteriorate which wasn’t the most motivating of consultant appointments. I had kind of known this was coming one day but it’s not great being made official.
So, what did I do with this news. I absolutely had a mini breakdown for a few hours which involved near wailing and publically breaking down all of which wasn’t overly attractive. I didn’t actually consciously feel that upset about the situation but my subconscious obviously had a few things to say about it.
When I pulled myself together with a little help from my friends and a plentiful supply of prosecco, my stubbornness kicked in and am frankly of the opinion that I can’t deteriorate . Maybe slightly optimistic but am willing to give it a bash. Who knew that my stubborn nature could one day be so useful.
It’s going to be a tough road but hopefully now I have kicked my writers block I can log the journey…….
So, I’ve have officially been useless at writing my blog at the moment. There, I have put it out there because ‘officially useless’ sums it up perfectly.
I have no idea why I have stopped blogging. The randomness of a life with a brain injury has just meant that I haven’t been able to do it. Rest assured life is far from quiet and on a daily basis I have ideas for blogs; so therefore I have set the wheels in motion and am getting there for pending commencement…..
I have come to a point with my blog whereby I have explored ‘main’ issues surrounding my personal brain injury and now I am doing the actual living with it. The shock, learning and coping stages have pretty much been paddled through and now reality has hit. It’s a very bizarre concept being ‘normal’ and living ‘normally’ and is something that I do struggle with. This struggle however is generally burying itself gradually but I have come to the conclusion that it is actually a working progress and so it is important to manage ‘challenges’ rather than ignore them.
A recent example of my being so normal is that a certain person commented as to how my speech is normal. Obviously most people would take this as a compliment and it was obviously meant as one. It however had the effect that I have been quite frustrated as I can find it really difficult to communicate. It takes a huge amount of concentration to get the correct words out let alone remember the question you have been asked. It’s not the case that I don’t like communicating because I do (and do quite a bit of it!) but it’s the frustration that because I appear so normal it is very easy to forget that it is difficult. It probably doesn’t come across as a big deal getting the odd wrong word or not finding a word or losing the thread of a conversation but when this happens all day one can maybe be forgiven for getting a bit snappy when someone says you seem perfectly normal.
The point of this blog is not to moan but to raise awareness that Brain injuries don’t go away. If there is awareness ultimately it can only be a positive thing?
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.