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.
Saturday, 8 March 2014
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
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.!
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.!
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.
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.
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.
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!
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!
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