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Thursday, 31 December 2015

Lost and Found

So many things changed for me post my brain pop but I expect some of the deficits would have come to me as it probably does to all of us with age , like the loss of short term memory and brain fogs. Some are maybe an exaggeration of what was always there in my character , feistiness and irritability are definitely up a notch on before but my empathy and patience increased in bucket loads and my pain threshold is off the scale. So always a gift. Other skills and traits have disappeared, maybe they just waiting quietly to be rediscovered or maybe buried forever. Only time will reveal and that's the mystery of living with a hidden condition, it steals away previous capability but with fortune there is always the possibility of a new path, a new style, it just takes some getting used to. 

I don't ever wish my brain haemorrhage hadn't happened or wished it to someone else, how could I when I am one of the few so fortunate to survive something like that, 2/3 people don't live through a SAH so I just feel very lucky mostly and my new version it is what it is and now that time has passed enough water under the bridge and I feel far enough away from the horror and pain that came along with my sudden event and the hard year that followed I just feel privileged to be able to learn and observe from my own struggles as I become familiar to living with this new version brain of mine and its onboard kit. 

So as we head to the start of another year I thought I would share my lost and found list of living and adjusting to life post my SAH bleed and the subsequent surgeries for that and my shunt James which has left my brain changed forever.  

I lost brain a lot of brain cells 8/3/2012 due to the severity of bleed and through the surgeries and hydrocephalus  but I have learnt , regained and found new ways of learning since then and I now treasure and treat my brain a lot more kindly and tread a little more gently through life.  

I have lost touch with some friends since that time but have gained an understanding of what true friendship looks and feels like. I am blessed to have the people that I do and I don't ever take their friendship for granted. I just hope I can one day help them the way they have helped me .

I have lost a lot of worry and fear, it's strange how an event that forces you to know your own mortality can do that but I have found I am much more at ease and accepting of situations and really don't worry about much.

I lost a little of my ambition. Well I think it's safe to say I have realigned it to the possibility of achieving whatever my current state allows but in doing that I have found I enjoy just doing what I do, for now anyway.

I have lost respect for people that just moan and witch about everything and everyone without doing something to change but have found courage to walk away and distance myself from that. You don't ever need that stress in your life and it appears my brain hates the effect of it therefore I do not allow it in mine.

I have lost a lot of social fun times and this has been hard to adjust to as you see I liked a bit of scene, a party, a loud concert but I have found I adore a 121 conversation just as much these days , it requires less energy and booze than dancing on a table and I don't  care too much about the subject on offer as long as it's one that interests, intrigues or inspires and is with good company.

I have lost living for tomorrow or in the past. I have found I can only do what I do and live in today and with a bit of luck and a fair wind I will have another one tomorrow and if it doesn't well I can say,'well today was a good sort of day'

I have lost the ability to sleep completely flat due to the effect of my shunt at night so now sleep Barbara Cartland style propped up on cushions but without the pink nighties and feather boas but have found that you really can get used to and adjust to anything if you keep a positive outlook. I mean every time I forget and tip my head to far or back I get to hear my gravitational valve work and move, how cool is that, I get to hear the internal workings of the rubies at work with the hamsters. 

I have lost count of the pills, procedures, scans and doctors I have seen  but I have found that progress is best measured by looking at your lowest point and then where you are today, nothing else really matters.

I have found it always good to try help someone else no matter what your struggle is and so I have the lost the inhibition to offer help if I think it's needed. 

I have lost the feeling that I have to go it alone for something to matter or be worth something and learnt it's actually better to #lean in , you can take the corners better and it makes it easier to hug other people if you do. 

In closing my blog musings for this year I thought I'd share an Apache blessing with you which I rather like, not sure of the author but if anyone knows please let me know so I can credit it. Happy, peaceful and healthy 2016 to you all. 

"May the winds from the sky world blow direction upon your own course,
May the sun provide warmth and healing,
May the moon light your way when you are lost,
May the Earth be steady under your feet so you walk in a good way,
May all respect you in your path,
May you respect all in their's,
At the end of this day may we gather together,
To celebrate a day well done."

Saturday, 1 August 2015

A missed deadline

One of my champion supporters is leaving me, the UK and is off to start an adventure of grand proportions and I confess to mixed emotions of being thrilled and excited for her combined with the more selfish reaction of knowing I will miss her company greatly but also miss the comfort and reassurance she always offers me when days aren't so good.
Early on when I was locked in my hospital bed she Was one of my many frequent visitors but who often used to just stick her head round on her way home from work which was just round the corner from NHNN and the cheery smile and kit Kats she used to bring were a beacon of sunshine plus she has a unrivalled access to good reading material which comes in very handy when you spend as much time in bed as I did. She was my escort into london when I started going back in for work, got me Audio books to practise my cognitive listening skills and is all round good egg but it's very cool that she's going to try something different, I'm even a little jealous. So we have established I am going to miss her but no doubt with the world of technology we now live that Skype, face time and FB means that we will stay in touch better then old.

Over the years I have become familiar with this parting from a lot of my Dear friends, It seem I make friends with a lot of people who subsequently go to live overseas and it's always bittersweet to say adieu... Australia. Ibiza. Switzerland. France. USA. Dubai. All good places to visit but not quite as easy to get or give a loved one a quick hug. But to all those far flung friends I celebrate your sense of adventure and life is so much sweeter knowing we have great places marked to visit with lovely people.

To say goodbye and farewell before she flies a party was held and whilst there the husband of one friend noted that I hadn't blogged recently, and why not? Well it was very gratifying to hear that he had even read my blog but he then set me a challenge to update it. Which I subsequently missed. Just one more missed deadline. Now I could have sat down and written something at the time but to be fair I didn't have much new to tell or share. My reality is that I have learnt and accepted that none of the parts of my brain that took the hit when it popped will ever heal and I think I have pretty much come to terms with that now. I have crafted and grafted to get a new level of balance and ability that works for me and family life even if that pretty means zero social life and bed by 9.30 most nights. I get checked out regularly by my neuro team who congratulate me on how far we have travelled but like everyone else in their life travels, I can only do what I can do and for me now that seems to mean staying in a pretty steady but slow phase of recovery. Its just A question of waiting to watch and see what it reveals this time. However that state makes for pretty boring blog updates so far better to speculate on how everyone else is doing and revel in the exciting adventures they are having. My time will come; albeit probably wearing sunglasses , earplugs and cool hat!!

Often a lull or even a backward step has been followed by something else coming on line. I speculate that the brain whilst laying down new pathways sets aside and conserves some extra energy to deliver it, a little like overnight lane closure that go on for months for roadworks improvement. So we shall see if something new is revealed. Maybe a super power. That would be nice. adequate Negotiation Skills to deal with a teenager would also be nice.

So Mr Cerrone I apologise for my missed deadline but I am still curious to know what the Gardener saw. Mrs Rees please have fun and enjoy the desert. And to all those who settle down with me and read this over a coffee, thanks for continuing to come along as I learn to live with this rewiring. It's an evolution every day but doing it in your company is so much easier than battling alone.

Sunday, 8 March 2015

3rd popiversary reflection

8th March marks International Women's Day each year and gives celebration and recognition to the advances made in women's equality but also seeks to recognise and highlight the struggles faced by women across the world every day but 8 March for me is also the anniversary of a day of which I have no memory but marks a moment in my life when I had very good fortune to survive an SAH but rewired the person I once was. My feelings and memories of the experiences that followed for me after that IWD  resurface with me every anniversary whether I wish them to or not as I and others recall and note the date so thought worth a blog moment.

That day I was happily pottering through life with no inkling of what was going to unfold next, it was just a regular day at work when everything literally went pop. Good friends and prompt amazing medical care and great fortune gave me a good outcome that day.   None of us can ever predict what's around the corner, but only hope we have the strength and good luck to tackle what might come our way and every day since 8-3-2012  has been a tallychart of tracking my progress and what I am capable of doing, on that day, at that hour, in that minute. It would be wrong of me to compare my struggle in magnitude to any of those women in war torn countries or living in crisis but my experience in the days that have passed since has increased my empathy and understanding for anyone facing challenges, struggles, terror which they seek to overcome.

There is a privilege for me in being able to reflect over the three years that have passed since my life changing pop and see my progress and improvement in health and ability. Time has passed far enough now that much of the horror and epic personal battles are faded and less powerful in their ability to scare me. Yes I can still be gripped with a new pain delivered by my healing grey matter and the realisation of the extent of changes wrought when that invisible aneurysm hidden in my brain unexpectedly and dramatically burst, is still developing. I find out new limits but often this  opens new doors.  I am reminded weekly, if not daily, of different barriers to completing things the way I used to do but will always seek alternative solutions. The beauty in all of this is that I get to see what I can do now and really appreciate progress but equally learn tolerance to accept what is different from my previous version of me and where my capacities have changed.  Given my starting point and prognosis that fateful day I can only be grateful for what I am able to do since and now .  I like learning and this healing brain has always gives me the chance to learn constantly, I relearnt how to do so many things, I learn how to live with pain, to cope with brain fatigue and I learn to say no and ask for help and it's those last two that are two of the hardest to keep practicing and make a habit.

Thing is that people really do seem to like to be asked to lend a hand, they really do and most, not all, just want to try and help you to progress past your struggle. Not do it all for you, or solve it, fix it, but just raise you up to assist you in moving forward and that for me is what IWD is really about ,it's a positive movement of progress and assistance which is not always without struggle so it's seems fitting my popiversary shares the date. It's about really seeing and noticing people around you who might need a hand and not being frightened to offer some of your help. It is also about being kind to yourself and telling yourself 'well done' at the hardest of times of your life because all of us face struggles and challenges but our biggest champion and supporter in continuing to have energy to battle them is yourself. So if that little voice in your head today brings doubt to your table then why not replace the internal commentary with the kind of supportive and kind advice that you would offer a loved one in a similar situation and give that counsel to yourself. I try to do that each day, I don't want the doubt and fear to take hold I just want encouragement that tomorrow can be better so that it what I have told myself each night ever since I came round in my hospital bed in the days after my IWD,  and you know what, it often it is. As Churchill once said, 'never,never,never, never give up'.

Saturday, 10 January 2015

Bring me sunshine

This time of year in the UK is always grey and frankly it can be quite miserable on occasions;short days, wind, rain, cold but now that I have the experience of a previous year of understanding the effect of that on my damaged brain I know that it turns the dial up a notch or appears to when it comes to the pain and fatigue I live with now. That means that when that happens is it's less scary, I am less convinced that something terrible is amiss and can reassure the gremlin voices that it will pass , which it does, but my ego and I battle daily as I so want to do everything at the pace of old and I just can't manage it especially when the weather is at its worst, I may look the same but the voltage I run on is very different these days and I just can't function as well. Those times are the hardest, accepting that today I need to take a stick when I walk the dog not because the ground is unsteady but because i am and not being cross about that but actually grateful at the chance to walk.

Not a day passes when I don't appreciate the good fortune I have had in my recovery, sure it's not all a rose garden but I can see my progress and i have regained so much and know that the story could be so very different so I have much to be thankful for even on the grey days and that helps.

Brain injuries are a truly invisible condition and just this week I learnt an astonishing fact that over a million people in the uk alone are disabled by theirs and I imagine many of those are not obvious to people around them. I don't think I would use that description to apply to me but I am definitely limited by the lasting damage from my bleed , hydrocephalus and surgeries but hopefully as the years pass I will learn to extend beyond those limits and find new routes to continue following my dreams.

This march will see me mark three years since my life changing massive brain pop but taking each day for what it is has served me well and is a practise I will continue with. I'm not sure how much I will blog this year about my further recovery not because I think I have finished the story but I have different goals for this year so maybe I'll blog about that, we will see.

Happy new year everyone. Hope it's healthy and spiced with happy moments.