Search This Blog

Thursday, 19 December 2013

A Time to be thankful

Christmas is a reflective time of year for me, it always has been. The nights are long, the skies are low and it brings with it a feeling of promise for the coming year. I also find there is a stillness about the season that affects me and I wonder if that explains the current landscape in my recovery which seems slowed to previously.

I have had a bumpy ride the last few weeks as once again my head has reminded me that I am dealing with an unpredictable pattern and it pulled the rug from under my feet leaving me frankly a little startled and confused. I think I have been so focused on reclaiming my physical abilities, meeting personal goals and achieving a mental level I was familiar with that I haven't really paid much attention to what has actually changed upstairs and I know that actually quite a lot feels different in how I feel and think these days.

My natural instinct from early days was to set my recovery route and goals based on what I was like before the SAH, I mean I had had 40 years of knowing what I liked, learning what I could do and trusting my instincts and my ability, that's where I needed to head right? Apparently that's not strictly true. The different version of my brain is now in charge And I know it far less well and it's steering my ship! Frankly I think with all my energy and effort distracted on destination 'getting better' I managed a pretty good Concordia impression and hit the rocks , even though I could see them looming up I couldn't steer away.

I am beginning to understand that I need to start letting go of old ways of how I measure my own success and start creating and forming a route that will play best to my new strengths and make allowances for the deficits I now live with.
I have told my daughters on many occasions , ' just because you want something doesn't mean you should get it' and I think the same will probably ring true here. Yes I want to get back to all that I was, all that I knew, all that I was comfortable with but that's not going to be the answer for me here. I think I have to go on charting a different course and the route is unknown as yet but hopefully I will find new comfort in those surroundings and they will be more suited to the changes in myself. I can't push myself to be exactly like I was , I need to stop doing that and I think as a result I am grieving a little the loss of those things that I took so for granted in my life.

I realise I have lost so little compared to many but still some of those losses are hard to reconcile to. I liked my old version of me and I am yet to become familiar enough with my new version to say that we are friends yet.  I miss having peace of mind and confidence in my own body. I miss the little pieces of self confidence that seemed to have sheared away with each medical challenge. I miss that care free self that used to stay up late trusting that my brain would take the hammering. I miss the freedom to live at the pace I was comfortable.  Oh so many things I miss most of which most others wouldn't notice but I can tell they are gone.

For all that shared I definitely am happy with some of the changes that change has brought . I like my new found focus on things, no longer do I multi task, I am a skilled uni-tasker and proud of it. If I am talking to you you can be certain I am listening not doing masses of other things at the same time. Empathy is new in my tool kit too. For example when Princess Diana died I didn't have much empathy at all with people's reactions. My old friend Fruitbat would attest to that, but the new me is moved by much more, Nelson Mandela's death had me weeping. I like the stillness that I have found and I am comfortable with that.

So Christmas will roll around again and I feel blessed and fortunate to be here, spending time with people I love and who love me and I hope that New Year will see me making better friends with my upgraded software and stop trying to retrofit stuff to the install that I just don't need.

Tuesday, 19 November 2013

That's not my name

Once something is decided in our house these days we tend to treat it as fact from that point onwards and don't spend any more time discussing it. My squirrel like attention span means I have already moved on to the next thought or maybe I'm just admiring the way the light is catching the trees, maybe the gerbils are having a little scrabble and I'm listening in, either way you get the picture the fact is I move on extremely quickly and the family are catching onto that practice too and embracing it it seems.

Sometimes though our speedy decision making can leave a story untold and some slightly bemused faces in our wake as they aren't too sure what they missed, ' should we ask?' I expect they are wondering.

Youngest beloved daughter came home from school earlier this year when head pop effects were beginning to ease a tiny bit and announced that she wanted to change her name. She explained that there were lots of other wonderful girls at school with the same name which meant that she was called by her full name, Christian and surname by everyone, all of the time. I could see how that would be annoying.  "Great, fabulous idea" I agreed. Actually I was super proud this eight year old had the confidence and thought to come up with it. By the time hubby got home from work it was fait accompli in my mind and he was wondering why we kept saying 'bell' all the time. Next stop was a letter to school and it was job done.

 Thing is we had her birthday party this weekend and it suddenly hit home that actually I hadn't done a particularly good job at communicating the change to everyone who should know. School friends, yey ! Grandad. Oops. Auntie. Oops. Implementation successful. Communication rubbish!  Her birthday cards bear this out, you would think I had twins living in the house, that or a bipolar. As for my Facebook account, friends must be thinking 'why is she calling her daughter by a different name.... ' Those of you who know what I used to do of a living will be laughing themselves silly but it was actually very liberating to just make the change and move on but it's another little reminder that my head thinks and just does stuff a little differently to the head I previously knew. I just presumed everyone must know. Interesting stuff.

So the daughter formerly known as Izzy is now just Bel. Just so you know.

Monday, 21 October 2013

Samual Pepys I ain't

I am not sure that I have any more right to write about my experience than anyone else but almost immediately since surviving my Sub Arachnoid Haemorrhage and it's subsequent life changing effects came a need to write about how I have felt and the experience of it all. I guess it has turned into a cheap form of therapy for me. Even in the darkest of early days, once I came round in ICU with tubes running everywhere and morphine levels high I began jotting into a notebook that a friend had left by my bedside .

I remember my nurses asking me on one occasion what I was writing about; I think they found it slightly nutty that here was this woman who had a head half shaved, full of staples and pipes , unable to stand unaided but was often to be found scribbling furiously into a notebook. It amused and bemused them at the same time. Perhaps there was also a nervousness that I was cataloguing the less salubrious goings on in a critical care ward (I did get a few of those too!) . All I know is that I poured my thoughts, my fears and sometimes my amazing hallucinations into that little notebook. It was a companion, someone I could talk to no matter the time of day or night. I filled that notebook entirely in those 6 odd weeks that I spent locked in ward in a bed in London. To be honest I have only looked at what I wrote a few times as I still find it a bit painful to read. Interestingly whilst I may have thought I could write at the time my handwriting and spelling tells a different story. Some of it is completely illegible, other bits just drop off the page and I often stopped halfway through a thought. A page turner it most definitely isn’t.

I kept up writing my diary once back at home. I captured my daily achievements, my tiny successes, and the painful progress. I wrote down my pains and aches like I was keeping a weather chart. I listed goals for each day and tried to tick them off. Sometimes it was just ‘get up’ and that is all I achieved. It’s really strange to look back on that time and have a reminder of it. I wrote how happy I was the first time I was given a full head hair wash but also the fear that just doing that could dislodge something in my head. I wrote of my embarrassment that I had to be helped to wash by family members as I couldn’t manage to do it by myself. I recorded the tears that fell because I couldn’t manage to even brush my daughter’s hair ready for school.

Roll on a few months and despite thinking I was doing well I found myself back again in the hospital. That was a shock and a half and to be honest I was feeling frankly miserable and bruised and battered and trying to weather the after effects of a second brain surgery. That’s when I started this blog, which looking back was probably a pretty crazy thing to do at the time but I have gained a lot of comfort from writing it. It seemed somehow a more civilised way of writing my thoughts down and also it gave me a way to practice doing things which to that point I hadn’t been able to do. Before I had James shunt put in to relieve the brain pressure from the gerbil wee I couldn’t watch TV, look at a screen for any length of time, but after the operation, whilst it took its time to get to a steady setting, it was instantly easier to look at things online.

The other positive side of all my online journaling is I can tell people around me how I am really feeling without having to look them in the eye and say it, something I surely couldn’t do without tears on some days. I suppose I am still grieving for the bits of me that I lost when my brain bled and whilst it does get better, much much better, it can never be the same as it was, what I knew and was familiar with. Hey, but any change is always hard right?

My closest and dearest family and friends see me every day, they see the progress I am still making, they know the battles I still face and struggle with, they reassure my fears and they realise and support me as my recovery is years in the making and not a matter of months. That’s a harder message to tell and this blog helps me to be honest about that reality to people I see less often and is my easiest way of being the honest upfront person I think I always was and still am and if along the way a few complete strangers read it and enjoy it too, well then that’s all good stuff too.

Friday, 4 October 2013

I think like a squirrel

We've all seen the little squidges, hard at work, furiously at work burying their latest nut, totally concentrating on their task at hand when all of a sudden they lift their head and bound off in another direction and start the same thing all over again. This week I have felt a strong connection with my furry cousins and had moments when I have felt like Scratch out of Ice Age as I repeatedly have gone back to a task that I had thought I had done but in fact had only imagined I had done it so each time my nut was missing!! Blooming annoying.

So what? I hear you say, you do that all the time too. Well that's probably true but I've been learning all about my brain this week and I have learnt reasons for changes like the one I describe above. Whereas I was thinking that my memory had deteriated post my SAH I have now learnt that in fact my processing power has probably gone down a notch or two, so it's not that I don't remember it's just I just didn't file the information fully in the first place. And the good news is that hopefully I can continue to retrain and reboot my brain , YEY!

Life marches on with me. I'm back at work for a fair few hours now,I am managing weekly trips to my London hospital for rehab completely unaided and physically I remind myself more of the pre pop Tifty. Who would've thought all that was possible even twelve months ago, not me for sure, yet here we are. Time has passed Slowly but it has been kind, and after lots of baby steps , gritted teeth and the odd few moves backwards and sideways, its good to report that its going pretty well right now. I know that this dance will continue long into the future, maybe my entire life, but I suppose I am more familiar with the steps which makes it a little easier when I stumble or fall.

I still set myself little goals each day, a trick that Headway introduced me to early on. Admittedly some days those are simpler than others but there is some satisfaction to be had in putting a load of washing on, honestly there is. I didn't say enjoyment please note, I derive satisfaction that I could complete the task I planned to. Wanted to clear that up as I don't want friends to worry I have had a complete personality change and now enjoy doing the laundry!

Tuesday, 3 September 2013

Holidaying at home

Last summer I spent my summer holidays in hospital or in bed. I didn’t even have the consolation of being able to watch the Olympics as the stimulation and noise of TV was just too much for my battered and recently invaded brain, in fact the opening ceremony spectacle almost did me in…all those flashing lights and drama…and There was no escaping it on the general ward. You would’ve thought a neuro hospital would have realised that this was unwelcome sensory overload but I guess they were caught up in the excitement like everyone else. I did at least get to see the Red Arrows speed over the hospital on their way to the opening ceremony which brought a much needed smile to me and hubby.

Our entire summer was a write off, interspersed with the odd drama of blue light trips to London ( 35 minutes in rush hour traffic if you are interested) and lightened by the promise of relief that James Shunt was intended and did eventually bring. The weather even joined in and it was thoroughly miserable and pretty tough going.

Foward onto this year and the holiday season has arrived witness to a much improved body and mind thank goodness and that all too rare occurrence; a sunny British summer. My events from last year has left me determined to enjoy as many moments as I can but it's all a little gentler than the olden days but I'm loving it all the same. Interestly I am probably the family member in least need of a holiday as I have spent so much time of late focussing on me, resting up,generally being kind to myself and I am in no rush to holiday abroad yet and test how the gerbils react to cabin air pressure but that's a goal for next year I think.

I do find life bumps along for me more comfortably when it's taken at a slower pace these days and it’s a case of weighing up what can be done against how much effort it will take me to do it. The ferryman will always take his toll. I know if I plan a day out that I will have to exercise judgement of how many of the activities I should actually join in with and when to sit things out; literally I park my bum down. This summer has seen me sat in hat, sunglasses and earplugs in many different places whilst the world whirls past me but it is a happy state I sit in. Ok, so it’s a little frustrated but primarily happy state I sit in and here are just a few of my top moments from this summer , each of them representing a huge improvement on just a short 12 months ago and although after each day out I then have a rubbish few days they are definitely a fair price to pay..

1. Trip to the Tower of London. Yes, it was busy. Yes, it was hot, but I think it’s one of those places in London where you can always find a peaceful and quiet corner which is strange considering its violent and dark history really. We loved this day out and whilst sitting quietly having my usual rest in my invisibility cloak of glasses and hat a blooming raven hopped up on the bench next to me. ‘Caw, Caw’ shattering my peaceful private meditation. Cue every tourist in vicinity completely surrounding me and the bird and taking numerous pictures. I am tickled that I'm probably in so many holiday pictures. The girls and MIL returned from their trip to one of the Towers to find me chatting to a very nice founder of commune in Indiana… pre SAH I am sure I would never have stopped long enough to experience all that.

2. ‘StephFest’. Last year I turned 40 but I was too feeble and poorly to celebrate at all so we deferred celebrations to this year; the Big 41! Actually it was still a very gentle and low key celebration compared to events from yesteryear but the normalcy of having friends and family over, coping with the constant hum of background noise and just managing to be present for it was a HUGE thing and a lovely time was had by all.

3. Blackberry picking. I love the therapy of picking blackberries and there are loads and loads of them this year thanks to the sunshine although i didnt realise the highland cattle had been moved back into the field which was interesting. That said we have had a great haul which then allows me to indulge in another pastime I like; making jam. I do it in small batches so as not to overload myself but my cupboards are beginning to show the fruits of our labour and hopefully there will be more to come, the apples are ripening nicely now, then green guages ...can’t wait.

4. Swimming in the sea. If I can forget for moment the awful journey to and from our coastal destination then I can savour instead the sweetness ( and coldness) of dipping my body into the sea for the first time in ages. I have always enjoyed swimming and it was glorious to be splashing around with the girls although I didn’t half ache the next day.

All in all this summer has involved plenty of nicer moments which are gradually crowding out the awfulness of the last year and a half and brought with it new moments, new memories that all help me heal.

Wednesday, 10 July 2013

Happy birthday to ya!

The last month has been a good month mostly. Some ups. Less downs so on the whole I will chalk this up under 'still improving ever so slightly' category of recovery phases as opposed to ' completely crappy' or ' neither here nor there'.

To lift spirits I've been fortunate that I've had visits from not one but two of my dearest friends in the last week who also just happen to reside halfway around the other side of the world now; was it something I said? Anyway, it was great to see them though if a little emotional and I can recommend a transatlantic friend or two comes in very handy if you're ever ill and stuck in hospital. I found it so comforting last year to have someone to keep me company by text on the late and noisy nights, and someone who loves you in another time zone is just the ticket. My friend might disagree as when I told her I was being kept awake by a fire alarm ( rubbish noises when you had the head from hell that I did) She did point out that maybe I should be evacuating and not texting her. As usual it was the nurses setting off the alarm with the toaster. Or then another time when I was texting and shared i was not feeling great then promptly fell asleep so not replying to next text, it's always nice to bring faraway folk closer by worrying the hell out of them via technology.

This month also saw a trip to the neurophyschogist. Hard enough to spell that, in fact that could have been the first check, spell as many words as you can with neuro in them. All in all it was a very enjoyable few hours spent naming as many fruits as I could in 1 minute, completing mental arithmetic tests, being a human thesarus and spotting what's missing from pictures. I don't have the results as yet but I'm sure it will just confirm what I suspect , that my brains filing cabinet may have been knocked over but I just need to continue to work out where everything has been put now. Most of the time its where I left it but sometimes there's a little surprise instead. I think all the questions about fruit obviously affected me during the session as later I wanted to answer banana more than once but managed to hold myself in check. Fruit Tourette's obviously.

I quite gratefully handed the medical spotlight baton style over to my sister a few weeks ago as she managed to contract a strain of bird pneumonia. Thankfully shes over the worst of it and mich better now so The search for a cause has started. Fingers have been pointed at the bat that flew into her bedroom as beng the likely culprit of carrying this nasty bacteria strain but I confess we havent been as generous with support as we could be and there has been the odd rendition of 'Bat in the Bedroom , what is she gonna do?'. Cruel I know but laughter is the best medicine and after all she's the one who started all the business about the gerbils in the brain....

Oh that reminds me. Huge milestone. James is one year old next week. Happy Birthday James. Wow. So this time last year I started my blog whilst in hospital feeling miserable waiting to see what my prognosis would be and then before I knew it I had a super new haircut, staples aplenty and James Shunt has taken up residence in my head. It's been an uneasy partnership since then as i have got used to life with a toilet overflow type device onboard at the same time as recovering from the SAH but I think it is safe to say but we are doing well. Really well.

Saturday, 8 June 2013

Let the river run

I've been a working girl all my life or so it seems but to be honest I have never really known what i wanted to do although I have in the main enjoyed everything I have done. I've already mentioned in a previous musing that I didn't have the courage to fail at being an architect which I rather fancied doing so instead of getting down to studying I scooted off to London instead where my education was of a slightly differing variety. More of that later.

I started young with my work ethic; I dabbled in a little cottage industry making Fimo badges when I was at school and that brought in extra pocket money but it was clear I was never going to be a talented artist. Babysitting for kids that were only a few years younger than me earnt me plenty and taught me tips I use today as a mother ( always have ice pops in the freezer) but quickly proved anything related to teaching or childcare was not my vocation. A Saturday job in my future brother in laws shop was a great social tool for future beaus but didn't bring many prospects long term.

I'm supposed to be grown up now but it's mad to think that I still don't really know what to do when I grow up and yet having had so much time of late to think about it I'm still no closer to knowing. What I have realised though is my experience over the last twenty years means I am actually pretty well suited to the work I do and as in recent weeks I've finally started back doing some hours it has brought hme to me again just how important work is to my psyche. It's good to know when you can do something, and I'm learning what and how much of the stuff I used to do is still possible and in reach. But Blimey it's hard work this working lark after such an absence. My poor brain has been through it over recent months and i thought i'd felt most things but I swear I could hear it fizzing and stretching the first time I opened up an excel file after a lengthy time apart. Excel I have not missed you in my life.

I'm taking things super slow as i return which is not something that normally features in my plans but I'm fortunate that I work with enlightened people who understand that you can't rush this brain of mine. It won't be rushed. A friend shared with me a view a neuroscientist had given her which is that the brain is like an elephant and the mind is the rider of that elephant. Sometimes the elephant is just going to go its own way and there isn't the slightest thing you can do to turn it, might as well just look up at the clouds once the elephant is off rampaging.

I have wondered often about choices I have made in my work path but equally I think most things work out well if you believe that anything is possible. I do wish I had been less scared to fail at things when I was younger but maybe that realisation only comes with age and the experience that failure is not actually scary most times, hell what is someone's definition of failure is another's of success. The experience of living with a constant changing pattern of health , now thats scary somedays, and the shadow of fear it casts is challenging my values and stretching me like nothing has before. Just last week saw hospital trips and blooming big needles and it threw me back to unhappier days. It's so hard not being able to trust in your body , in the signals you always felt you knew pretty well. And I'm SO impatient. I applaud the slow movement but equally find it hard to be in enforced membership but I WILL learn to live with it.

my London education? Where to start? I could vault any road barrier whilst hailing a taxi and wearing an extremely short skirt. I measured Petula Clark for a bra. My flatmate and I were word perfect to Carly Simons working girl theme song which would be belted out after many a late night salsa and tequila night. Oh the sweet innocence of the early nineties, maybe that's the subject for my next blog entry. I best warn said flatmate before I open up that can of worms. I don't think anyone has a picture of me trapped in an Oxford Street escalator though after it ate my skirt...thank goodness mobile phones weren't as commonplace back then as that would have been a million plus viewer on YouTube.

Wednesday, 17 April 2013

Surviving the shark attack

There I was just happily going about the everyday business of life. Rushing here. Rushing there. Cramming it all in. Busy, busy , busy. Then an unseen force grabbed me with the ferocity of a shark and in a split second, or thats what it felt like, I had gone, pulled beneath the water and everything just stopped. Silence.

Later on, after I bobbed back up to the surface a few times, wounded, battered and bruised it was clear to me that something was very different inside, missing even , but what was it, what had changed?

Its oh so tricky to explain the feelings of the changes that have occurred to my pre pop self, and now that I am 'looking so well' , 'why thank you very much' , it has become even harder to voice that I'm not yet back to my normal self and that it's probable that a new normal is my destination, and it's a journey I'm still travelling. That said that I have a chance to get to a new place is still something I'm eternally grateful for.

To use a computer analogy it was a little like my hard drive got wiped and although I've managed to do the back up pretty comprehensively ,albeit gradually , I do think that some of my functions have got a little bit corrupted and don't do quite what they allowed me to do before, certainly not in the way they previously did. I have friends who are very skilled at cobalt and Unix so maybe they could just write me a little programme to correct the coding errors that have crept in.

Some days I can just do stuff and I'm like 'hooray' and then I speed up a little and then WHAM, I get stopped in my tracks, or more commonly it just feels like someone has put a speed restriction on me so that i walk a bit slower or some of the words get nicked out of my brain just before I was going to use them. Or I need to sleep. Immediately. CTR ALT DELETE. RESTART. Sleep is often the answer and after a quick doze I switch back on and ready to go again.

I've had to practise doing things that I took for granted, to remind my brain of things we used to do well together but I have been very fortunate that My brain is allowing me to do that. Ive adopted an approach of super gradual re-introduction to most things and been kind with myself ( most days) and not expected to be able do everything at the levels and speeds I once did, well not straight away. My optimism remains mostly intact and I can hope that I will get there with most things and I have been delighted every time I have been able to bring something back that was lost to me for a while, especially the small stuff.

I have reclaimed threading a needle, walking the dog, standing on one leg, actually my list of accomplishments to date is nice and long considering how deeply I was submerged and the ferocity of the attack so I do remember do pat myself on the back occasionally.

My inspiration to push on and take the knock-backs has been taken from people who have been my constant supporters through this entire process.All of them have been knocked off their life course when they least expected it and knew what that felt like and just counselled that it always takes time to heal and adapt.Im sure that they didn't know how they were going to get through the next days, weeks , months but they did and they are using that strength and knowledge to help me.

In fact when I take a look around every single person who has reached out to me, sharing the love, have been dragged under by a shark at some point in their lives. And they all got back in the water and carried on swimming. So that's what I'm trying to do. Follow their awesome lead.

When I think back to people I have loved and lost whom I admired, they too all had great white moments during their lifetimes and they lived to tell the tale. Even those that didn't survive their attack showed such courage and dignity that it would be selfish of me not to get back in the water and swim until frankly all I'm good for is shark bait and I blooming love swimming.

I expect I'll always hear the JAWs music at times. It creeps up on me ...that's the fear coming of the known terror, the real and unseen risk that forever lurks. That fear that will try and stop you doing stuff in case you get hurt again, or it lists out all the 'what ifs' but I have to learn to put the ear plugs on and just paddle on ignoring the music cos there's always a shark or two in the water.

Hey, maybe I should learn to surf whilst I'm at it. Would that make it any safer i wonder? Knowing my luck I'd be the one surfer chick who got mistaken for a seal....still it might make it more fun to ride the waves....right too many analogies .I'm done for now.

Thursday, 7 March 2013

Paper anniversary

I have mixed feelings this week and I am a little bit more wibbly and my head is definately letting me know that something is on my mind.

I know the reason so I'm not too worried. It's my paper anniversary tomorrow on the 8th of March of when I had my SAH and it's bringing some strange feelings. They'll pass if I give it time.

Interestingly International Women's Day falls every year on the 8th March and will always hold special significance for me now. The irony that my greatest life challenge started on a date that marks a day that is set aside to review the struggles of women worldwide and examine them in a hopeful manner is not lost on me. It is actually quite helpful in realising I am in very good company when trying to overcome my own challenges. Huge it may be for me, but small in the context of others suffering.

Ive had a lot of people get in touch over the last few days as the approaching date has reminded them of the dramatic events of last year and they want to check I'm ok with that which is nice. I am. Mostly. Its weird, it's not a date for me to celebrate anything but it is a reason to mark how far I have come and I'll be doing just that.

Ive not written about what happened when I 'popped' and here's the reason, I have no definite memory of it. Sure there are some snippets that have filtered through my sub conscious, but in the main I cannot recollect anything past a very pleasant evening the night prior spent in the company of good colleagues which finished with a nightcap with two very loved and dear friends. That's probably a very good thing. I wish I could gift the same amnesia to others. I think the horror and fear of what unfolded in the first few weeks has probably stayed fresh for those two people and for my amazing scaffolding network of family and friends who visited me constantly in the coming weeks and months. I wish I could take those memories away from them. I hope they are fading now and replaced with new and better ones to keep.

The simplest fact is that a team of doctors and medics saved me a year ago. There's not a lot I can add to that but I owe my life to the courage, skill, awesomeness and pure ability they bring to work at the cutting edge of brain surgery. Thank god there are people who can do that job, I couldn't, certainly not now anyway, haha!

We can laugh about some of it and we did at the time. My bed sit out: wheeling my brain drain kit off down the ward when I could hardly even move to stage a protest at the MRSA vomiting bed neighbour who should have been isolated and who was finally moved as a result. My repeated delight at seeing people who were visiting my bedside even though I had already welcomed them at least five times already. (Groundhog day isn't that bad. )The larger lady who refused meals but then pulled her curtains like a cloak of invisibility and ate crisps noisily, did she really think we couldn't hear her? The emergency confiscation of my phone when I was emailing work, in my defence I had no idea I was on line, well frankly I didnt even know where I was or what date it was , I probably thought I was on the crappiest assignment ever!

Much of my time though contained much less humour in truth and those of you who have been part of my journey know And share that with me. I am thankful, so thankful , then as now , for the love and support I received and still have surrounding me. I can tell you all that even in the darkest moments I could feel that love. It lifted me up. You all gave me strength. I was never alone. I'm so very lucky.

And so this first year has passed with James and the gerbils as my new full time companions. I survived something that many don't. Certainly not without scars, mental and physical (and new mechanical parts), but I'm here and enjoying life. I don't think I ever stopped enjoying it really but its been hard at times to see through the tears.

What has helped me get through the toughest times was always having small goals in my mind and although mine over the last 12 months were very back to basics it was still good to tick them off and mark my progress. I read back my diary ( which is hilarious by the way, such rambles!) and pulled out some of them below.

See my darling daughters -it was a long 2 weeks before I did. It was amazing.
Get home to my own bed - took an even longer number of weeks but oh the smell of your own bed is special.
Stop getting blue light taxis back to hospital -three times a lady is enough, we have driven ourselves up the last few times which is much more civilised and far less noisy.
Walk to end of road- YEY i can walk at least a mile now without the stick.
Grow back hair - its all cut off now and very Human League but it's growing and is not much greyer than before.
Stop being in pain - Im living with it , dealing with it and learning all the time.
Return to swimming - 16 lengths today !
Start knitting - yes and friends are suffering the consequences, sorry!
Complete a new project - antique chair restored , tick.
There's lots more, all of them small but significant and they track my steps and journey since last March. I'm proud of them all.

Im really Looking forward To making even more progress this year, i know i may get knock backs along the way, who doesnt? but I hope to add at least the following; get back to driving, get back to work, take a flight, spend even more time with friends, keep enjoying the slow life.

I read a quote yesterday which made me giggle and comes from a German saying which basically says 'there's only one end in life , only sausages get two ends', I'm sure one of my friends could provide the real quote. I guess I got a wake up call that day that Im not a sausage. ( ok sometimes im a silly sausage but you know what i mean.) What ive learnt is the small stuff is really what it's about,( not the hokey cokey) , enjoying it all and riding the highs and the lows. You may already know that so sorry for the patronise but I think I probably was paying more of my attention to the big stuff.

So, with a little more luck and lots of hard work I keep easing towards a different normal whatever that looks like and with each step I can get a little bit more ambitious and a little less scared.

There is one goal on my list though that has remained constant throughout this time that I'll try and keep doing as long as I am able to,
always appreciate the small things.

Be well everyone.

Friday, 1 February 2013

Brain versus pain

When I was a little girl I dreamed of becoming an architect. I wanted to design. It never happened and I have ended up doing a variety of jobs since then. Reflecting on my career (having time on my hands since the brain pop) I realise all my jobs to date have given me opportunity to come up with different ways of doing things and ideas and solutions and it that I love. So I guess I am an architect of ideas!

Over the last 12 days I have been sick as 3 sick dogs in this fine London hospital but I have spent time thinking about what I would redesign to improve hospital life rather than wallowing in the pain.Imagine how pleased I was when I discovered my bed neighbour, as well as being very tolerant about Jurassic Poos headed her way, is an architect and artist. Pain can be distracted I have learnt by good conversation,ideas and of course morphine and I have had plenty of all three. So hats off to Doodle girl and here is our top 3 redesign ideas.

1. The chair commode. This unisex contraption has a small gap between disposable bowl and seat. Boys, you have the advantage here with your multi directional wee stick. Girls, its not good news if you're busting. I'm on fluids IV so have pressure equivalent to a water mains pipe, this means I always find the gap and can spray down my legs before you can say 'please nurse'. My suggestion is simple, make the bowls fit the gap and deeper; trust me it's not a spa treatment to sit in a bidet of your own wee even if you haven't had a warm bath in days..

2. Bedside cabinets in hospitals are rubbish, lots of hard to reach cupboards and a shelf that everything falls off the back of. Hospital big wigs, what we need is plenty of different size sliding trays and hanging pegs. I have spent a lot of time recently clawing around for stuff that falls out and frankly I think there are better forms of occupational therapy. Im sure IKEA have just the thing and would do a deal.

3. Noise reduction sleeping ear muffs. All patients should be given ear protectors that are soft enough to sleep in but up to the job of muffling those 'aiaiai's' that turn up a decibel at night. Thanks to beloved husband I have F1 ear plugs already but frankly they're as much use as a Eskimo in the desert.

So that's my top 3. feel free to add your hospital environment improvement ideas. Who knows might get somewhere. Thank you for taking the time to keep me company in hospital and to read this ramble.

Pacing sucks

I'm approaching a year on from when I had my brain haemorrhage and it's amazing how far I've come for which im so thankful but also how achingly frustrating progress can be sometimes. Brain injuries are curious things;being the wonderfully unique creature we are every brain injury will manifest slightly differently, there's no well trodden path of symptoms that are easily explained or treated.

In my world it often feels like I have gained a mysterious passenger whom delights in chucking out heightened responses, sensations or pain often when I least expect them. This list is not exclusive to brain injury I know, everybody says the wrong thing from time to time, misplaces a word, forgets their keys, gets headaches , the oddity of this new experience is that when something has kicked off in your head like it has in mine that my every sense feels very exaggerated. Its like I've bigged up all my sensory and emotional receptors. "I'd like some grief please?" , "certainly, would you like to go large with that?" "why yes". Actually , no I wouldn't but it appears I have no choice in my new state.

Pain can shoot up quickly and inexplicably and then can leave just as quickly but leaving behind a creeping exhaustion like you've just worked 16 hours straight even though it's only an hour since our hauled your arse out of bed.

Before my brain pop could have sat through ET, Lassie, Chalottes Web, Terms of Endearment and not shed a tear, some of you may say thats not a good thing. Now however you only have to waft a baby near me and I sniffle, shown a sad story on the news triggers full blown tears and a simple argument over tidying the kids bedroom apparently can end in tears as quickly as you can say " because I say so that's why!".

I am gradually getting to know these new modifications to my brain upgrade, I'm learning the signs , triggers and trying to limit the effect they can have on my everyday living. Not all the time though and this week saw me having brain and body scans to check that James and the gerbils were in ship shape condition as odd symptoms completely and quickly knocked me off kilter. Its all tickety boo though which is great but there's an element of Fluidity and surprise that is keeping me on my toes.

In my quest to recover I have been introduced to 'pacing' and it's beyond BORING. Yes, I know it makes logical sense to keep a steady pattern of activity , not too much rest but not too much excitement , you get the picture, but YAWN! it's hard to be this boring. Forced inactivity is such a strange beast, I even find myself rebelling against it which pretty much defeats the whole point of the exercise. I'll be sitting down having a quiet period and then find myself leaping up off the sofa and shoving a load of washing in just to be doing something! I mean I bloody hate washing,I never rushed to do it previously but the lure of doing something , anything is just irristable somedays and then I pay the price of rushing. Hey ho, progress is painful I suppose and I've come a long way in a short time, I have faith I'll get there, maybe wearing sunglasses and earplugs but I'll get there.

Friday, 11 January 2013

Skyfall with Nana

I have leant heavily over the last few months on every member of my family. They too have been on a journey that at times has been fearful and worrying but throughout this episode in our lives they have remained calm and offered me love and support at every turn , even if sometimes I'm too much of a grumpy sheep to accept it.(topical children's xmas play reference!). This unity has helped me build my strength and confidence so that i can slowly move forward and whilst it's slower than the pace I would wish for I can see the changes.

One thing about having this kind of event happen and the subsequent brain insult is that it is a very tortoise paced process to reclaim things you were so used to doing. Some might never be in reach but with others its about rebuilding the confidence that it's still ok to do it. Thankfully I've been able to do lots of things again for the first time; swimming was blissful but scary, riding a bike was challenging but probably a bit much too soon, wobbly is an understatement but bizarrely enough my real test of nerves So far was going to the cinema.

I've been left with some noise sensitivity and tinutus and bright lights bother me, and all that aside if I'm honest , what i was really nervous was that having that intensity of experience might be dangerous, would my head cope? But I don't Want to be scared of stuff, I need to move on. What to do? Step up my Nana. Yep , my ninety year old grandmother volunteered to be my companion on my first trip back to the theatre. So off we went on our adventure. one rainy afternoon in late November we taxied to the flicks with our mint imperials and ear plugs for me and watched Skyfall. Even with my ear plugs in I could still hear Nanas intake of breath in appreciation whenever Mr Craig removed his top, which he did a lot. Respect!

Fast forward to now and I'm mourning the passing of my vibrant and steady cinema companion but reflecting on the gift she gave me that day. Yes She checked i was ok but she didnt fuss me, she just had belief that it was all going to be ok, and encouraged me have the same faith and to take each day at a time. Her philosphy was to keep going until the point at which you no longer can enjoy yourself.
Laugh often.
Cry often.
Be greatful for the small things.
That is what she did and it served her well. So gosh I miss her but I'm stronger and happier for having known her. And I hope they have some fit Daniel Craig lookalikes werever she is, she'd like that!