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Tuesday, 2 December 2014

When the wind blows

It was incredibly windy the other day where I live as the tail end of a hurricane blew in from across the Atlantic. One of the oddest and strangest side effects since my brain bleed is that wind can really seem to shift the old neurons around a little and make me feel extra spacey. I'm sure everyone has seen a cat running and jumping when there is a gusty wind, they twirl and spin like dervishes and just appear a little unsettled by the weather and it creates a similar feeling for me but without the twirling and spinning( guaranteed to fall over on my arse if I did that!)  I have speculated on reasons for the increase of sensation , maybe it is the increase in noise and vibration that the brain has to process but whatever the reason wind of the weather kind is guaranteed to run my new neurological battery levels down quicker than anything.  I wear a hat most days but in wind it is an essential bit of kit for any outside activity but even that doesn't save me from the impact of wind rushing across my ear drums it seems.

The weirdest thing though is my increase in brain fog is always accompanied by deep and eye watering pain all down my right side finishing buried deep under my shoulder blade and so I find myself singing not ' rain rain go away' but 'pain pain go away' which thankfully it does when the wind finally blows through. This happens each and every time the weather changes so it can't be coincidence can it as I know that shortly after a low pressure front rolls in I will be saying hello to the old faithful of the pain and brain fog like I am greeting a relative that I don't get on with but still have to give uneasy house room to; I don't have a choice but to let them in! actually I now find the better way is to accept it, sit with it and then it eventually changes and blows away leaving me feeling relief and a renewed vigour and thankfulness of how lucky I am that it does always keep changing.

These peculiar effects one of my bleeds legacy and shadows reminds me how little we understand about the brain but that fact leaves me wonderfully hopeful in the possibilities for my continued healing and growth.

Tuesday, 26 August 2014

I am one in six

I notched up another year older this month and was delighted that I received amongst my birthday gifts a dedication on a radio show with the song 'one in a million' . It was gifted for me by the ageless Mr P who hosts the show and whom I forged a friendship with over our shared penchant for Paisley shirts and music many moons ago. As well provoking an emotional response from me and raising the inevitable questions from daughters? "Was he your boyfriend?" (here in print just for the record girls" no he wasn't and girls and boys can be friends"), it made me realise that's whilst I am so lucky in the odds of having survived my 'brain happening' of a subarachnoid haemorrhage the legacy of it and resulting hydrocephalus means I am now included in the much more common number of the one in six people in the UK who live with their neurological condition rather than being one in a million. Before I became part of this special club I didn't have much awareness of brain conditions and injuries and my knowledge compared to say my level of understanding about other scary conditions like cancer was pretty poor but I have come to realise how common it is that people live with a neurological condition, one in six of us in fact. Traumatic injury, Alzheimer's, MS to name but three in fact I bet each of you reading this know at least one dear and loved one who lives with a silent brain friend that shadows and clouds their personality. As I gradually familiarise myself with this new version of me I have reached a certain level of acceptance that this is my new normal for right now but I tread cautiously everyday as living with a brain condition means you are always on shaky ground, it's a bit like the hidden fault lines in our earth, that's what we are left with, invisible scars and damage and you can feel fine one minute and then an unseen tremor will appear out of the blue and unsettle and knock you back off balance , literally some days I land on my arse. My 'San Francisco' head it seems can still accommodate the fun , flamboyant and fabulous but is just a little unpredictable in how or when it delivers.

To ease my acceptance of the post pop brain I found that acquiring knowledge of what might help me and learning about coping with the effects of brain injury was just as important part of my recovery as the medical and physical rehabilition and invaluable to help me progress and find new ways of doing things. It's been so beneficial to share ideas and experiences and I have gained support to date from fabulous organisations like Headway, Shine and all my doctors and nurses and a rather super Occupational therapist. About six months in when I could bear short moments of screen time I found a forum for SAH survivors and it has offered a safe and non-judgmental place where I can connect with people who have bleeds like mine and who understand the choices I make each day and to reassure me on the times when the creeping and sensations that my brain can still produce get a little too fearsome. I think the key when something of neurological nature enters your life is to ask for help as much as you can which is blooming hard for an egotistical independent lady like myself but it does make a massive difference to swallow that pride as there is help to be had out there and if you can't do the asking then the people around you should speak up on your behalf. Brain injury affects confidence a huge amount so if you know someone who lives with a condition then a little praise and encouragement goes a long way I know that firsthand.

Along this line of thought I was pleased to see the recent profile ALS has brought to it's cause. The ice bucket challenge is sweeping the Facebook channels at the moment filled with people enjoying showing their ever innovative methods of being drenched with water but I hope those who have watered themselves have stopped for a moment and really thought about what the disease does and why is freezing water on the head is so appropriate? I have had many head freezes without pouring over a bucket of water but Motor neurone disease is a particularly despicable disease that slowly and surely shuts down neural pathways one by one , freezing them if you like, but in common with all brain conditions it requires more research and innovation if cures and life enhancing treatments are to be found and that takes hard cash and I hope all of the drenched donate to a neurological charity of their choice as well as posting their video. I have always said that I was very fortunate the day my head went pop, yes I know that's a strange thing to say, but within hours of my brain bleed I was in the hands of some of the worlds best surgeons and my recovery I know owes dividends to them and it's why I will continue to support The National Brain Appeal as this charity supports the development of innovation and treatments across all neurological conditions that in turn brings hope of improved outcomes for more of the '1 in 6' in the future. So I don't think I'll be taking the ice bucket challenge myself for fear my head would throw a wobbly but I will continue to raise money whenever I can to support neurological charities and applaud anyone who does the same and if chucking a bucket of water over your head publicly means fewer people get 'frozen' in time and more can have renewed hope and contented lives living alongside their condition then how brilliant is that?

Tuesday, 8 July 2014

Clanging and banging

Yesterday I took a trip to the big smoke to keep a date with a machine that looks like a big donut, yes it was time for my annual head scan to check all is tip top up top. My hospital has one of the few MRI machines in this country where I can place my head safely and my James Shunt magnetic operation won't get messed up ; it's pretty reassuring to know that tons of powerful magnets are whizzing past your head which all this metal paraphenalia in it and that I wouldn't be stuck to the ceiling so to speak.

The scan itself is pretty straightforward, ear plugs in , then I get immobilised around the head with a odd head mask not unalike one Hannibal lector sported, actually it's not that bad but it feels pretty strange and then you are wheeled backwards into the donut and sounds like forty leprechauns with jackhammers doing a dance next to your head for twenty minutes. I always giggle as without fail the kind staff always ask before I go in what music I would like to listen to, "pop or classical" ...., completely pointless as you can't hear ANYTHING  over all the clanging so it always seems a strange question but I guess you wouldn't know that if you hadn't had one.

I've been asked if it bothers me having scans like this and the honest answer is the scan never bothers me it's the memories that it triggers that give me a little wobble. I have needed a fair few scans when the situation was slightly hair raising to say the least and that always pops into my head whenever I am back in that situation, that said it's great to chart how far I have come but it's very easy to remember a time not that far back.

When you are in the scanner you are completely alone , just your thoughts for company I suppose and I have found my practise of mindfulness has been really helpful to get through moments like that without too much panic or worry. It lets me focus on that moment and actually it makes the time pass much quicker. I was very pleased though to hit the streets of London afterwards and look up at through the trees and buildings and see blue sky. That's a good feeling and it always reminds me of how wonderful it felt when My hubbie wheeled me out around those streets for the first time after my first op.  It's also a humbling experience being up there as it's right next to Great Ormand Street and you see all these children coming off wards to get some fresh air and their courage shines at you as you pass.

Today is another day folks. Use it well and look up at that sky sometimes, it's always changing just like us.

Thursday, 1 May 2014

Who's afraid of the big bad wolf?

I've spent a little time of late pondering the nature of fear and worry as I am now convinced that it is a little like muscle memory, the things you have experienced in life remain as an imprint even if you don't recall them and these fearful memories can be triggered in unusual ways. I thought a little about this because I had decided that I was going to push through a fear that I had developed since my brain pop ; flying. I had decided I didn't want to be scared of doing something that medically I am fine to do but still I wasn't sure how that was going to go with me.

There are moments now when my brain just has a little sport with me, it conjures very real and painful physical symptoms which in turn sets off the worry and fears that I thought I had tamed or at least placed to one side. It rushes up at me knocking me sideways and takes my breath away and I have to wrestle with my mind to calm myself , persuading my troubled brain that it is not in fact anything to be worried about but purely a chemical reaction from my re engineered brain. I have come to recognise these feelings most of the time, to live with them and have learnt it's not uncommon with any brain injury to have this kind of legacy. It seems that my response mechanism to fears has altered slightly. People often ask me whether I have any ongoing problems post my head pop , I suppose it is a question which is entirely rational as to all intents and purpose I may appear completely fine in my appearance which makes explaining my bizarre neurological symptoms pretty tricky to get across sometimes. It makes perfect sense to me that a physical space designed to be the most airtight and enclosed operating structure might develop some peculiarities once exposed to blood and air and the resulting damage it sustained and then what with the addition of James ( shunt) to manage my gerbils it conspires to create a perfect storm environment on some days. The only answer is to sit tight, shut down and wait. In time it will pass.  So you can imagine the prospect of taking my adjusted head on a flight was a little daunting, well I confess that  I was wondering how the assault of the noise, the pressures, the emotion of the day would react with me. My ego was pretty bruised too knowing how many I flights I have whistled through in my adult life when getting on a plane was as familiar to me as a train ride and yet here I was harbouring a fear of ' what if?'  That was stopping me jetting off. I decided I just didn't want to leave it any longer, It had been on my list of goals to reclaim for long enough. And wouldn't you know it. The flight itself wasn't too bad, hurrah! My fear stayed silent and let me Sit back and weather the flight and it's effects which was a very welcome outcome.

With my brain now there are no preliminaries , no niceties of the usual symptoms that tell you you are tired, overwrought or overextended it just forces a shut's hilarious in fact how much like a computer it is.  I still had some unexpected ' system is temporarily shutting down' moments when we arrived at our destination after the flight and also in the weeks since getting home but the family is well versed in this now and know it wasn't anything to panic about, most of the time they slipped off for a swim whilst I waited until I could restart again, sometimes in safe mode ! I guess I am living proof that sometimes 'turning it off and turning it back on again ' really works sometimes. . I have to act quick to be able to speak the words , " I need to go rest" before that ability gets blocked out sometimes leaving me to mime that I'm off!

And so my recovery moves on, each day is slightly different, still very much in slow mode but happy to have ticked off another of my ' reclaim' list, I wonder what will be next?

I will finish by thanking all of you who kindly sponsored my hubster on his run in aid of The National Brain Appeal, he did great and with your help we raised a tidy sum so we are very grateful for your support.

Saturday, 8 March 2014

Rattling the collection plate

So this time 2 years ago things weren't looking that promising for me to be honest. That's what I have been told anyway. My last real memory of that day is of telling someone that something was terribly wrong in my head. Then nothing else.  Roll on 24 months and my landscape is very different. I am back working through the support of fabulous work colleagues , it shows me what can be achieved when you keep an open mind to what is possible. Working has been really important to help me keep plotting new pathways as my brain continues to heal and learn new ways after its injury. I also have ticked off a lot of my 'regain'' ambitions , not all and I confess to not being terribly patient with my progress on others but I will plod on and I have a big one planned which I report on in due course. I have moved slowly, painfully at times but even on the hardest days I can still see how far we have come, it's a wonderful gift really.

I have been so fortunate in having many comforters, cheer leaders and reassurers ( is that even a word?) throughout this time. People brought me kits kats, sent me cheery pictures and words, sent me texts to lift the spirit and kept me in mind. I am part of a new club, old friends wrapped me in their love like a comfort blanket, family  kept me steady and stable and my head up.  I have completed the thoughtful gifts of jigsaws to test the grey matter, knitted, sewed and each little test and challenge felt like one more neuron firing into life. Yes it still hurts each time a little, bit like your worst hangover if you really want to know (I guess that's why I just don't drink anymore, I get all the effects with none of the fun) To the darling Allan's I can only thank you ( I think ) for introducing our family to Jungle Speed. MIL hates that her grandkids beat her every time we play and it was an absolute torture for my memory at first but I am glad to say I have gradually mastered it.

Then there has been my amazing guinea pig wrangling hubby. He's been through the mill too for the last two years. For better for worse, isn't that what they say? Well this has definitely been one of those worse but also shown us our 'better' too. He has lifted , mopped, driven, comforted , rushed, waited, prayed and loved me. He has calmly and patiently helped and coached me to keep on keeping on through the hardest of times. And all the time he has just exuded a confidence that sometimes I just didn't have, that it would be ok.  And now what's he gone and done? Well only taken on the challenge of running a marathon for the hospital which is probably one of his least favourite places in the world. Think about it. I mean I have a fond attachment to the place, sure there are some pretty horrid memories but mostly I feel good about my time there as it's where I was given hope and reassurance whereas for him this is where he has felt at his most hopeless , sat for what probably felt like the longest and scariest moments in his life. It's a place where he held our babies as they cried after seeing me, where he was helpless to do anything but watch and wait with the rest of the family and not know what came next. I wouldn't have blamed him if he never wanted to go near the place again but instead he is helping me raise money instead because this is a place and are people who fixed the pieces that were broken , helped us learn about changes my bleed wrought and they are doing the same for people everyday of the year and we can never repay that debt. We want them to be able to keep on helping the seemingly impossible cases, allowing people to hope against odds , to keep pushing surgical boundaries, breaking new ground, finding neurological cures for big and horrible diseases. There's always a sad story, but there is also some amazing stories within them where amazing things have been achieved and it's because of places like this.

Brain conditions are just like any illness , they are hard,  they don't discriminate, there's nothing easy about it. I have dear friends who have their own brain challenges that they learn to live with, I've met even more people through this experience who have survived seemingly impossible traumas and it's never a straightforward recovery or path for any of us as there is still so much that remains unknown, uncharted. We may look ' fixed' but there's a lot still going on believe me. We still need  organisations like the National Brain Appeal to support and help us move forward.

Sponsor London marathon

So hubby runs a long , hard run on 13th April  and I know he won't complain to me about any aches afterwards and we really want to raise some money that will go directly to improving outcomes for the 1 in 6 people in the UK that have brain conditions or injuries.  If you can spare anything we would love it for you to sponsor his race. Well to sponsor a great charity really. Thanks.

Thursday, 23 January 2014

Marathon training Bear Grylls style

Are you sitting comfortably? Then I'll begin.

I'm taking a break from writing about my head and feelings and all that guff today as I have a story that just begs to be told and frankly it just makes me giggle thinking about it. It's all true, every last word of it.

Once upon a time there were two fuzzy and cuddly guinea pig brothers. Bumble Bee and Carlos. These little chaps were not known for dangerous stunts or daring deeds but all that was about to change. The cheeky fellas persuaded their owner that it would be a good plan if they were to get a bit of fresh air as a change of scenery from their winter quarters in the shed and were duly placed safely into their carry basket and were soon off on an adventure swinging down the road. Thing is that adventure was just about to get very dark.

Now what happened next is still unclear. Maybe the to and froing of the basket made them feel a little seasick, maybe they got the wind under their tails, all we know was there was a sudden Mexican wave inside the basket which tilted it sideways. Suddenly the lid flew open and for a moment there was a matrix style slow motion guinea pig flying through the air.
'Noooooooo' we both yelled. Bumble bee sat in the middle of the road and glanced casually at his owners before scuttling under the nearest largest bush.

Couldn't swear. Little ears were present. Now what?

I made a mad dash to place his brother back into hutch leaving youngest in a staring game with bumble and returned to start part 1 of the great guinea pig hunt. Well we clambered through bushes, we placed random slices of cucumber and then it got dark.

You can imagine the scene can't you. Tearful children, wide eyed mother trying to keep her blood pressure down( let's not forget that I'm not supposed to get too excited) , probably half the cats in the neighbourhood peering round corners not to mention local mr. Foxy getting his bib and tucker ready.

We had to admit defeat and had to hope that neighbours placing shoeboxes filled with kale would do the trick and at least provide some sanctuary. ( how middle class am I that my neighbours eat kale?)

The girls , grandparents who had joined the search and I headed home a little sadder and thinking that we would have to tell Carlos that his brother had gone up to the stars. We hadn't however take into account marathon dad who on returning home was not to be deterred by the challenge of hunting for a black guinea pig in the dark.

He donned his running headlight and was off into the undergrowth. Truly a Bear Grylls moment to behold as he crawled along on his belly encouraged by neighbours who had brought out nets and boxes in search of bumble who frankly was not enjoying his Born Free moments who was sighted near to his launch point. Now at this point I can honestly say I do not ever thing there has been a marathon training plan that has included night time rescue of guinea pigs. It took stamina, determination, strong stomach muscles and a single bloody minded ness that this pig would be coming home.

And he did. Bumbles gratefully accepted the hand that reached for him and came in from the cold. Two happy girls, one amazed wife, one slightly chilly pig and a hubby who can now add guinea pig wrangling to his cv.

Happy endings. What is it with us and rodents. Guinea pigs, gerbils.....

Anyway if you are as impressed as I and enjoyed our tale then why not cheer my boy on as he continues training for London, which he will hopefully complete without chasing guinea pigs by sponsoring him and helping a fantastic charity at the same time.

Sponsor London marathon

Thursday, 16 January 2014

Making Hay

Happy New Year to all. I personally am hoping for a pretty uneventful , even bland year. Keeping to a slightly smoother path would be welcome too rather than my potholed if eventful route of late .

Him indoors is stretching his muscles and upping his training regime after agreeing to run London marathon this April for  The. National Brain appeal. There will no doubt be plenty of shameless plugs for sponsorship in next installment. I am considering selling space on his shorts or is that just inappropriate? Anyway the dog is already beginning to flag in the training as they are up to the 10 miler runs now. (I know, the thought of that  is just painful to me.)  Anyhow dog was used to 6/7 mile distances but this is a bit much for his aging bones so Hubby is now having to run one shorter circuit , come back drop the dog off and then go out again. If he doesn't do this  and leaves him behind then our mutt sulks even though he's been spared a tortuous distance. He thinks he's the original hunter runner dog I think.  There's just no pleasing some animals. Just goes to show we all resist change!

So I'm sure you know the expression, 'making hay whilst the sun shines', well I have decided to make a small amendment to this adage so my version of it now reads ' make a little bit of hay everyday if the weather is good and the gate to the field is open and it's good underfoot '

I have learnt somewhat begrudgingly that if I do too many of the familiar and energy consuming tasks I used to just do quickly and unthinkingly every time I feel a little more well and have the strength to do them then I very fast deplete the reserves that my healing brain is working so hard to rebuild. I think I've said before I have to go very slow and it's still taking some getting used to. It's a bit of a quandary for me to be honest, taking the decision not to do something today because I know it may possibly mean I am worse for it tomorrow, it goes against the grain to do very little.

Maybe it's not such a bad thing though. I mean this style is not all that unusual at all in many cultures but it's just so in contrast with the fast paced, grab and have it all society that is primary in this country and not always considered good and worthwhile.We all slow down as we age, that's not unique to me I know but I am learning about the limits and brakes of a body with less energy to spare and adjusting to that change.

I catch myself sometimes labelling myself as not being as useful, as successful, as valuable as I previously thought  I was which was probably rather egotistical of me.  So I have learnt some more about myself through my illness and it was a surprise to me that my subconscious bias linked the value and worth of a person , myself especially, to how much they manage to achieve. That's why it's called subconscious I guess . Anyway It's been an eye opener for me that whilst I have managed to reclaim many prior skills and abilities, and maybe I can do stuff to the same quality , I definitely can't do it as fast as I used to and that's ok , it doesn't make the achievements any less, any better or worse , and hopefully that's teaching me a few things.

It makes perfect sense to me that my brain is still using masses of energy as it heals and creates new connections which probably leaves less spare processing power to keep up with the other day to day stuff.  I have to take that into account these days and I think I still have plenty of contributions to make with any luck but I'll have to do them in my own way and time and not necessarily in a way I might think is expected of me and that's really the greatest change I've noticed in myself since all this kicked off.

Interestingly I suppose hubby is doing the same thing with his running. He will prepare for and run the same course as everyone else in April but he'll do it in his own style, time and capability, he can't do anything more or less than that if he wants to finish the race. Ooh that's a bit deep. Too much thinking. Off for a lie down.!