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The Art of Kissing Concrete

Life after traumatic brain injury

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28th December 2011

Merry merry

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Survived another festive season...not sure how many that is now but it doesn't get any easier.  The tree went up on Xmas eve and was back in the box by 2pm today (27th). It was just too busy...but at least I tried.

Apparently we have for the past few years considered the option of going away for Xmas, thus avoiding all the associated hoo-hah, but for one reason or another it just doesn't happen and once again I find myself up to my stressed out eyeballs in Xmas crap. I'm actually not convinced that going away would be any less stressful to be honest. Trip planning is stressful too... Oh well at least Xmas is only once a year.

Since October I have been considering options for improving my situation. I have been considering seeking some kind of specific brain injury related rehab therapy ...in the early days, when it would probably have been most effective it either was no accessible or I was not in any state to gain any benefit form it. Now years down the line it is harder to get in....I am back to the as good as it gets scenraio...and I don't like it one bit.

With the post counselling evaluation session booked for 10th January I am feeling more reflective. Perhaps it is the time of year too... I would like to see some positive change in 2012. Stagnancy is not an option. Life is too short to simply stand still and wait for it to happen around me... I will be the change I want to see...

Merry merry....

20th October 2011

October update

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Counselling group finished at the end of September and days later we went on our autumn trip. It was good. I was both amazed  and delighted that I somehow coped with the high temperatures in Texas and Arkansas, even though I had a low grade fever because some kind travellers decided to germ share on the outward flight.  There is sharing...and then there's sharing...

The trip went well I think. We had a couple of bumps but I held it together and am proud to say I did not get totally overloaded - systems all worked well. A small triumph methinks.

Now we are back and I am have been trying to ease myself back into a routine again. The jet-lag was brutal - I am still suffering slightly six days later, but they may because I also have held onto some of those kindly donated germs. I refused to be dragged into the routine I was in prior to the trip...it was exhausting. I needed the break from the point of view of needing to relax, but also because I needed a definitive break so that I could return and set my own pace again. To a greater extent that is working quite well.

After counselling I realised that I do need to get involved in the world  a little more and I have vowed to try to include more things that give me pleasure...like a walk, or some time spent with loved ones who do not share my home. I also want to expand my horizons somewhat and I have small plans to work towards that...

As for the rest...I am still faking it...can you tell? 

14th September 2011

Group works

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I have been taking part in a small counselling group for brain injury survivors for a few weeks now. It is  time limited and we are now past the halfway mark. It is a new offering and to some extent, as the first group, we are testing the process....but I was feeling like something was missing,  that the current format was simply scratching the surface and was more about a name it approach than one which would address any issues or move anything forward...until today that is. Today things changed and I got the group I had hoped for...

But that did not come without a price. Not only did I name it , but I felt it and shared some of it and cried a little and came out of there feeling like I had been hit by a truck. Its a good job I had someone to drive me home because I fell asleep in the car on the way back...but clearly whatever that stuff was it needed to come out and tonight I feel lighter.

Its a shame it came later in the process but it was good. Group work worked today....I hope that the other members of the group would agree.

5th September 2011

Time Flies

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Years into this life part two experience and I am still amazed at how times flies past without notice. This  Living in the moment lark certainly is a mixed bag...

Its hard to believe it is now five years since my concrete-kissing moment...but when I try to get a grasp of what five years actually means, there is nothing. It might as well be five million years or five minutes. It matters not.

When living in the moment it would seem logical to make every moment count...but it doesn't seem to work like that...at least not easily...and not for me. I find myself continually confounded by missed moments or moments wasted on trying to figure out what action to take or wondering what I should be doing. I waste moments trying to decide the best way to approach an issue and I am still so easily distracted by  ooh look shiny....all of which ends up leading to total inaction.

I have a to-do list that grows daily. I start each day checking this list, trying to decide which thing on the list should be tackled first. It is the first thing that is the most likely to get done. Anything consigned for later is doomed...

So why am I so exhausted at the end of each day...why am I so exhausted at the start of each day? Is achieving nothing much really that tiring? 

I am so frustrated at the moment. For starters I know that I need to sort out the chaos in this room. It is my creative space and to an outsider it must appear that all I create is a mess... I started the process but it grew just too big for me to handle. Now I look at it and simply do not know where or how to start...and so I don't. Technically I guess this is avoiding the issue and that really is not helping. I know I need to 'do something' about it, but I am paralysed.

I also know I need to do something about my weight. I have been less active of late and have clearly been eating more food than I use as fuel because I have gained weight. I know this for sure. I feel uncomfortable...so why on earth am I still eating in this fashion? What is wrong with me? I'm not stupid...

or am I?




1st August 2011

Marking the day

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I can't believe it is five years today...five years since I kissed concrete...five years...How did that happen? I didn't realise the date or make the connection until a dear friend noted her own bonkaversary on FB....and it reminded me that my big day was August 1st. So I am here... nothing to celebrate, not here to mourn...just marking the day.

14th April 2011

Plumbing new depths

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As is our habit we went away in March – our spring trip for my husband’s birthday, slightly delayed by family events that actually never materialised in the end anyway...but no matter. We went to Vegas and he had a blast. The weather was unseasonably warm and when the temps hit 97F I began to struggle to breathe in the dry heat. I like that I can slow bake without sweating though...that is an odd kind of bonus. Anyhow I coped... and I am proud that I did it woithoput my hand held fan...because of all the things I forgot to pack this time, the fan was it ...and on the trip when the temps far exceeded those forecast...

Anyhow we got home from our trip jetlagged as usual...it really does seem to get harder to recover each time but I suspect that is an age related thing...we are not getting any younger after all ...but wouldn’t that be cool?

Sadly we got home to a mini household disaster...a small odd patch at the base board level of our living room wall turned out to be the effects of a long standing slow leak from our shower adaptation... Plumbers were called and by the time they left it looked like a wrecking crew had done a drive through our home. The bathroom tile was ripped out to access the shower housing and the ceiling, coving and walls in our living room were chopped out in search of the leak.

They eventually found it but were unable to do the repair because the people who did the shower adaptation tried to cut corners and had laid pipe work across the central heating pipes...so we had to get heating specialist in to reroute the heating pipes so the plumber to get to the leak to fix it. Now we are in the drying out process and have to wait for an inspector to come on Monday to agree to the humpty dumpty house being put back together again.

This whole thing has felt li8ke a disaster and at times it seemed more than I could handle brain wise...but we are managing to get through this...and I know that when the works are finally completed the rooms will be redecorated and will be like new...maybe even better because the new decorating will brighten the place up and give the room a new lease of life...

And that got me to thinking about how this experience is a little like the one we had in 2006. Something small turned out to be a big problem with knock-on effects, but in the end the changes brought about were positive ones.


12th March 2011

Cake and concrete

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As I type there is a huge box in my fridge. Inside the box is a big cake - the baker promised me it will serve at least twelve people. It is deep and round and covered in fresh cream and has a band of chocolate sprinkles around the outside. The top has a Happy Birthday message in blue piped icing. The baker asked me what I wanted and looked at me like I was nuts because I double checked with my husband that the name was spelled correctly. I guess she thought I was nuts because I was so indecisive that he ended up choosing the style of cake and the topping and the edging and all the time she knew the cake was for his birthday... and obviously only  crazy woman would need to check the three letter spelling of her own husband's name...

Oh well at least he has cake. I haven't bought him a present yet. Nor have I made his card. I'm not really sure why but today  as fluffy and light and creamy as the box of cake might be , I feel like I am filled with concrete...with concrete frosting.

I hope this passes soon. I much prefer to feel light and fluffy...

10th March 2011

What a downer

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Here in the UK there are a range of benefits (all currently under review - or under threat depending on your pov) designed to help maximise independence for disabled people.

Unfortunately the application process was definitely NOT designed with disabled people in mind. It consists of a very detailed form with over forty pages and more than 61 questions. Everyone – claimants and processors - is in agreement that the form is a nightmare and to that end  we were told positive changes were coming in that would make the form more relevant to disabled people and more user friendly with an emphasis on can do rather than can’t....

The benefits system requires that every claimant undergo a periodic review. I see that this makes perfect sense but the review forms remain a nightmare. The order of the questions has changed but the information requested is still the same. It  still asks how long it takes you to walk x distance and still asks what do you need help with, why, how often , how many times per day and for how long each time. It asks about any help you get and adaptations you use and how they help – but I am guessing that these answers count for very little since nobody takes any action to help or even enquire about systems identified as inadequate. There is even a little box at the end for you to write about how your illness/disability affects you....Where do I start with answering that one?

Most of the time I am reasonably cheerful and don’t dwell on the frustrations and issues that disability has brought me. Those little gifts that just keep on giving....but because I have to complete these forms I now feel totally miserable.

It has taken me several days to complete the forms. By the time I finished and read through the completed answers I was totally drained...of energy and hope.

The only can do that I have any energy for now – were I able to do so without penalty – would be to tell them what they can do with the complicated and intrusive application process....

 

 


28th February 2011

Sharing a link...

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I thought this might be of interest... Part one of Hazel's story as shared on the  Headway page.

27th February 2011

Not again...

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My baby brother lives in Christchurch, New Zealand . We are lucky , our loved ones are safe. Others were not so fortunate and our hearts go out to them all.

 


3rd February 2011

(no subject)

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I have badly neglected this blog in the past year.... partly due to poor organisation on my part (and a stubborness that prevented me from requesting a new password and username reminder) and some ill health and random  distrcations and silliness...but at the end of the day its all just  a bunch of excuses.

So, sweeping that aside, I have grand plans to increase my blogginess and to use this fabulous facility.

To be honest (and I'm not sure why I type that phrase so often because I am not in the habit of lying...lying requires memory to be successful and I am fresh out of memory) I really need to keep a better record of events - life's challenges and my progress (or lack thereof) through both/all has been lost of late. I am hoping to rectify that.

I am not one for new year resolutions - I gave that up long before my inuury because they (reolutuons) were almost always broken within days. It seemed like a rather pointless exercise then, and  with less cognitive resources at my disposal is even more so now. Instead I decided to undertake an end of year inventory.

Taking this kind of inventory is not an easy - or particularly pleasant - undertaking. It requires looking back at all aspects of life in the past year - the things that went well and the things that didn't (go well)...and the things that didn't even happen at all...and examining the reasons behind the successes and the not so successful...and then looking at how things could be different, what needs to change and how to make those changes. It isn't a five minute task.


But it is worthwhile. It always helps to realise that there were things that went well, it makes the other stuff more bearable. It helps to identify areas for change...far better to do an inventory and make some simple changes, than to go round and round in circles never getting anywhere and wondering but never quite understanding why the goal was always just out of reach.

I used to make grand sweeping statements of intent.... I WILL... eat healthily, lose weight, exercise more, socialise more, learn new things, do more blah blah blah...No wonder I never managed any of these things for any length of time.

For this year I have decided to set myself small challenges for change. Each month I will set myself little targets. They will be SMART targets.
Specific
Measurable
Achievable
Realistic
Time limited.

I will  change/add new challenges each month. If I am abler to keep this up for the entire twelve months of 2011 I am in for a challenging - and interesting - year.

watch this space...

31st August 2010

Autumn

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Autumn officially starts here tomorrow...and the kids go back to school next week - and it looks like we survived the summer holiday period.

We spent a few hours on a couple of days this week doing work in our garden. There is something very satisfying about gardening - especially after a period of heavy rain. The plants were still wet and bright and the soil was dark and heavy and smelled heavenly. There are rumours that as a toddler I was found in the garden eating dirt and earthworms. Another rumour says that in my pre-school years I used to suck the dirt off stones and spit them out when they were clean and no longer tasty. Thankfully I have outgrown those habits...if indeed I ever had them.

The few hours spent working in the garden with my husband were precious. Our satisfaction at the end as we stood back to survey our handiwork was shared. The hot shower to wash away the bugs and sweat was sweet and the meal we collected from a local restaurant was delicious. Even the aching muscles that caught up with me later were enjoyable...proof of time well spent.

I am glad I have grown old and wise enough to appreciate the satisfaction of working in the garden...

Now I need to find the satisfaction in trying to book a holiday...with just weeks to go we still have no definite plans and nothing booked...yikes!

5th August 2010

Summertime

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Several heavy downpours, two thunderstorms and a rainbow - summer is here for sure! The children are on holidays and the streets are alive with screams and yells and heavy with the bounce of balls on concrete. The mornings are fairly quiet but the noise escalates form midday, reaching a peak around 9.30pm. Some nights it goes on past midnight, but for the most part Cinderella is alive and well.

I have to say that even pre injury the holiday noise, particularly boucing balls, used to get on my nerves at times, but post injury it drives me insane. It is repetitive and loud and feels like nails are being driven into my skull with a jackhammer. Neighbours say they barely notice it any more, but when you consider I hear the neighbours' phone ring before they do, that doesn't surprise me.

So while people mourn the loss of the sunshine and moan about the rain, I am thrilled. It can rain every single day from now to the first week in September and I won't complain a bit.

And in the meantime I will continue to do battle with an overload of information as I try to book our next holiday away....watch this space.

27th July 2010

I have treated this blog with the utmost neglect...shame on me.

I wish i could say that it is because I have made a full and lasting recovery and no longer have the memory and attention span of a dead goldfish...sadly the opposite is true. I am still stuck in limboland...better than la-la-land I'm told, although I fail to see too many benefits.

Anyhow life goes on. Sometimes thing run smoothly, other times they don't - in the end it makes very little difference to me because once it is done, it is done. Gone, consigned to the deep abyss of cognitive dysfunction.

Fortunately my sense of humour remains intact!

Since my last entry my age has increased by one - which makes very little difference to anything or anyone.  I have not reached a recognised significant milestone birthday and so have been allowed to let this one slip into the mist without fuss or bother.

I have been trying to get organised...I know I have been saying that for the past however long, but this is a serious effort - unlike all the half cocked attempts in the past. I have high hopes for this lot of trying...it seems to have some element of common sense attached and there is a written plan to accompany the vague theory of idea.

Now all I have to do is follow the plan...and remember to come back and report on the outcome.

Here's hoping.....


13th June 2010

 

Plenty seems to be the answer. I have gotten out of the habit of coming here ...I always mean to (I think) and soemtimes I even add it to my ever growing to-do lists...but when time is short (or long) and energy or brain bucks are scarce, this slips down the list.

I really do want to try to update and continue with this side of things so I plan to make a concerted effort...I am full to brimming with good intentions...I hope they won't lead me down that well-paved road...

Today was my mother's birthday. I tired tio make it nice for her. I really hope she enjoyed it as much as I did.

8th April 2010

OOps ...yet again

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It seems I have fallen out of good habits and into bad ones...neglecting my blog yet again!

Quick catch up....nothing much has changed: one day still blurs very easily into the next...and nothing much gets completed - the revamp included. We eventually got the furniture situation resolved, but before the reorganisation was completed, we went away on holiday...and when we came back I had even more supplies...which were added to those already here ...and so naturally chaos reigns once more.

Now I look at the mess and think I really must make a start on this lot...and then that thought is soon gone, only to replaced by another unrelated thought...and so it goes...

I was at the hospital today...waiting as usual...and it occured to me that I have not yet addresssed the caring for/about others deficits. I have strategies for the practical things and providing I implement them, they work fairly well... but what none of the practical strategies can do, is make up for stuff that was me based. I'm not really sure where I might start to look for help and ideas on dealing with this stuff, but it occured to me today that I need to at least give it some thought.






31st January 2010

Celebrations

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The reorganising is still ongoing...and  seems like its been going on forever! The damaged tables stalled but did not stop us completely...but finding out the dimensions and our measurements did not match was a real challenge.

I am really proud of myself for not totally freaking out. I am finding little non-freaky triumphs are becoming more frequent and that is such a good sign....

as is the fact the never-ending sorting is still a work in progress and I have managed - this far at least - not to sweep the whole lot into a cupboard and close the door on it. I am determined that I will see this through...or die trying!


I suppose it could be seen as sad that a grown woman considers not throwing a hissy fit as a reason for celebration...after all it is expected that adults behave as such, but for me it is a major triumph and I will wave flags in celebration of each and every one.

The 31st of January is the anniversary of Kara Swanson's accident/injury and in her blog she writes about how and why she celebrates the date. In her blog entry she writes that she has healed...and adds that the "recovery from a brain injury begins with the broken heart."

How true....

Please join me in wishing a 
Happy Anniversary Kara! 

17th January 2010

Stalled...

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No matter how much we plan, or how many strategies we learn and employ, there is still the potential for some outside influence to tip the whole thing on its head...and of course when it can, it will.

All our careful planning came to nothing when the ordered desks did not arrive when promised...worse still when they did eventually arrive the larger of the two (key to the whole furniture configuration) was damaged beyond reasonable use.

I took photos of the damage, called the company and emailed the pictures across. They responded by saying they would replace the desk....and then told me it would be five to ten working days for delivery. Yikes...that is another period with the whole place in disarray and two rooms effectively out of practical use. It also meant I had to backtrack on my freecycle offers because I cannot cope with no furniture at all.

This is horrible. Our plans have stalled completely...ground to a halt. I was uncertain whether to cry or to stamp my feet...in the end I decided that serenity was the way to go...accept the things I cannot change...

Can't say I like it... and it is really difficult with everything in limbo...but I can't change that and so we wait...and the prospect of what is to come looms in the distance.


Could I have done things differently to improve the outcome? I honestly don't think so. Sometimes even with the best planning in the world, life still creeps up and bites us on the .....


6th January 2010

It had to be done. It had reached the stage where it was hampering the smooth running of daily life.There was no more putting it off; the time to de-clutter was now!

But where to start?It all seems so daunting.The very thought sent me into a tailspin....so we sat down and devised a plan.

We looked at the bigger picture.What was the problem and what did we need to do to make things better? Once we knew what we wanted to achieve, we then looked at what steps would be necessary to reach our goals.

The basic problem was a combination of too much 'stuff' and the inefficient use of available space. Having things neatly put away does not work for me because it really is a case of out of sight, out of mind - if I can't see it then it ceases to exist. At the same time, having stuff spread everywhere is too overwhelming and does not work....so there needs to be a way of storing things that is clear and accessible.

So what did we need to do? It became clear that we needed to tackle one area at a time. That my creative space needed the most reorganising and that we would need to decant stuff from my work area in order to do this...but because our home is modern, and therefore compact, we would need the decant room to still be a semi-usable space during the process.

I was keen to get started on my space but I was persuaded that changing things and decluttering the spare room would free up space in there and make the major revamp easier.

So we measured and discussed and debated for two days before finally agreeing on the first step. We emptied and moved around all the furniture in the spare room...which was no mean feat when you consider there are two triple wardrobes, a tallboy and an eight drawer wide dresser...all chock full of stuff. In this case the stuff  in question was mainly my clothes, shoes and handbags...

Once the room had been throughly cleaned and the stray cobwebs were removed from behind wardrobes, we began the mammoth task of sorting through all the clothes... We quickly realised this was a huge task and that everything that hadn't been worn in the past few weeks actually needed to be tried on. Yikes!

We did it in a series of short sessions. First we sorted out the old and tatty for the recycle bin and then I tried on tee-shirts,sweaters, blouses and cardigans...dresses, skirts and finally trousers. Anything that did not fit well, itched, scratched, pulled or pinched went into bags for donation to the charity shop, along with anything that did not look good.

We made a small pile for things I wasn't sure about. My dunno pile meant that the process was not stalled while I went into indecisive meltdown. Just having this option seemed to help with my general decisiveness and at the end of day two there were only seven items in the dunno pile.

I am delighted to say that the first stage of the delightful declutter is drawing to a  close and the spare room is looking great and feels like a more user friendly space.

We are hopeful that reorganising the way I store my clothes and other personal effects will make it easier for me  and that I will actually  get to wear some of the lovely things I own. We have several back up strategies in readiness if the new system doesn't quite work out and we are confident that the changes are for the better.

Of course my creative space hasn't been touched yet and if anything looks more chaotic than before...but we are starting back at stage one with this room. There will be  measuring, discussion and debate before a plan of action is formed...After all that formula worked once so it should be good a second time....Fingers crossed eh?


31st December 2009

Lucky?

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LUCKY?

This evening I watched part of a TV show about brain injury survivors and several times the word LUCKY was used in relation to surviving a brain injury...I have to say I just don't get it?

My early notes tell of the number of times I was told how lucky I was...especially because around the same time two other people had very similar accidents and both died...in the weeks and months after my accident I truly believed those who died were in fact the lucky ones...

Where is the luck in being left with a brain injury that changes the rest of your life and the lives of those closest to you? What is lucky about not being able to remember ...who you just spoke to on the phone, what you had for dinner, what day it is, what you got up from the chair to do, how to make the wet stuff stop falling on you in the shower, what on earth you were going to say or the word for the small round thing that is just out reach?

Where is the luck in losing your job because you simply can't function at the same level any more; or in watching your friends slip away because they just can't cope with the new you

What is lucky about having your loved ones mourn the loss of you? (Even though you are not dead and are still with them every day) About having to have people to watch out for you; to have to be reminded to do every little thing? What is lucky about having your loved ones embarrassed when you have a public meltdown?

Lucky is wining a prize in a raffle; really lucky is a lottery win...escaping injury in an accident is lucky...

Surviving a brain injury has nothing to do with luckiness...although the level of services available to brain injured people and access to those services may depend partly on luck...in finding out the services exist, in being able to access those services and take advantage of things that are available, when they become available. 


Surviving the brain injury is only the first part of the journey...

 

Rebuilding a shattered life is the truly hard part...learning to accept that things will never be quite the same again and somehow finding the courage and determination to pick yourself up and build a new life. That is more about determination and grit, about loyalty and honesty and trust...on the part of the survivor, those close to them and those providing services, help and support.

 

I don’t consider myself lucky…but I am determined. I am determined to keep moving forward, living each day to the very best of my ability. I know they don’t have the technology to rebuild me, but I also know that I can make a new life for myself and it won’t be about settling for second best and it certainly won’t be about luck.

Tomorrow heralds a new day and a new year…a whole world of possibilities…let’s get out there and grab every opportunity with both hands.


26th December 2009

Survive the day

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December 2009

Its here…as if the build up wasn’t bad enough the day has dawned and I simply want to stay in bed and sleep it away…but of course I can’t and don’t.

 

Filled with dread and obligation I stagger from our warm bed and force myself to face the day. Ten minutes in I wish I hadn’t bothered…  and so I throw bacon into the pan and I hold the phone so my mother can hear the sizzling bacon…My husband backs the car out of the drive and  I tell her ‘he’s on his way’ and I attack the rosy tomatoes with a sharp knife.

Twenty minutes later, he is back and mother is in the kitchen asking if she can do anything …but I can't think what to suggest and so I say nothing and just concentrate hard on not burning toast…

And then it is done and we are eating…and all is okay.

They stand on the doorstep in their jackets smoking after breakfast cigarettes while I wash the dishes…He hears me and calls out that I’d better not be doing dishes…but I tell him its okay. This is my escape plan number one. I am doing something. I don’t need to think too much or too hard about anything.

 

After a while, I ask if they want to open presents first or should I take a shower first…they both say they don’t mind. I thank them. He tells me to shower…escape number two.

 

I stand under the falling water and rub shampoo in my hair, barely able to breathe and fearing my heart will break. As the water rinses the suds away the tears flow and I sob so hard it hurts. I cry for the loss of me, for the loss of the girl who loved Christmas, for the woman left behind and for my mother who misses her daughter and for my husband who does not deserve the half-wife he ended up with. I stand in the shower too long but I have to get all the salt water out of my eyes before I can go back downstairs. I can’t spoil the day for them; I just can’t do it.

 

I rub cream into my skin and paste a smile on my face. I comb my still wet hair and pull on my sweater. I go downstairs hoping my voice won’t betray me. I get a drink and we start the present exchange. Four times he has to remind me to open my gifts. I try to stay focussed. I watch them and in the distance I hear their words of pleasure and of thanks.

 

I know that my mother has found it hard this year…she has told me often enough. She misses shopping with me, she misses my enthusiasm, it’s just not the same she tells me…

I want to scream that I know it’s not the same…I do know it’s not the same. 

 I know how much it meant to her to buy me the perfect gift and I know how my seeming indifference to the Xmas process hurt her…and when the time came to open her gift I found it all too much. Her anticipation, all the hope she had invested in this came tumbling through. As I opened the box,  the tears fell down my face…I couldn’t see the contents and I couldn’t stop the tears and I could speak and I couldn’t move and I couldn’t control it and so it just fell…and she looked on bewildered….what’s going on?

I tried to put my head inside  the box; I tried to hide. How the hell do I know what's going on…all I know is that it’s not the same

23rd December 2009

(no subject)

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I recently went to our local Headway Xmas party. I went because I said I would and not because I wanted to go...


At the risk of being seen as Bah Humbug lady, I will confess that I hate these social events. I feel so adrift. My social butterfly was crushed in my accident and I am left feeling stranded.


I move around the periphery feeling awkward. I dread that someone will speak to me and in doing so will force me to try to find words and facts and opinions that I simply don't have or can't locate ..and at the same time I dread that nobody will talk to me and I will wander aimlessly...


The Headway party was probably a cross between the two. I am grateful to my memory for failing to provide concrete evidence of anything and I learned long ago that it is pointless searching for what does not exist ... so I let it go.

Was it a good night? Well it seems that, unable to wait any longer, I fell face first into meringue topped mince pie and chocolate tart in the car on the way home... and it was the best pastry I have ever tasted in my entire life....so I reckon that qualifies it as a good night.

14th December 2009

Another Year

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Another year has simply flown by and I am determined that another will not pass without an achievement worthy of note.

I have dreams and aspirations and yet they seem to slip into the mist of everyday life along with the mundane stuff. Its not that they are unimportant its simply that everything slips into the mist...I need to pick one and pin it down.

Tonight I was trying to respond to a request for information. At one point it would have taken me just minutes to compile a document outlining the salient points, and a few extra minutes to sort the information presentation...but now it takes me a while to think about what I want to say...a while more to realise I forgot the original question, several pages of notes before I have to go back again and remind myself of the original question ... and then several rewrites before I have anything resembling a viable document that I would be willing to let anyone read. It is a frustrating process. Trying to round up my random scattered thoughts and make them behave on the page is a matter of determination and a real test of patience.

From the beginning of this journey I have wanted to write something that I could share with others. I used to write - both for pleasure (my beloved fiction) and for work (industry specific copy) - and I ought to be able to do it now...but my disorganised brain is holding me back.

I was never one for New Year's resolutions and I'm not about to start making them now...but I hope to be able to take a step towards realising my writing goal in 2010. I am fully prepared to take teeny tiny baby steps but I must take steps...I need to move forward.

12th December 2009

I'm not a survivor

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If you were asked to name the defining moment of your life, what would your answer be?

Before my injury I probably would have struggled to give an answer ...there were so many moments and each played an important role in shaping the journey that was my life...

and then that fateful day and my accident...and that became the defining moment. The day that life as I knew it ended...and life part two began.

In life part two I am a person with a brain injury. I have a brain injury, it is not going to repair itself, it just is. I will always be a person with a brain injury.

But I am not defined by my injury. I am still a person. I still have hopes and ambitions. I have a life... maybe not the one I planned for myself but its still life and its mine.

I am not a survivor; not yet anyway. The battle for survival continues on a daily basis....but I'm a fighter and I will fight to be the best that I can be.



20th November 2009

I had a doctors appointment this morning. It was noted in my desk diary, on my wall calendar, on the noticeboard in our hallway, the alerts and alarms were set and started beeping down the days and then the hours...and, showered and appropriately dressed, I got there and I was on time...and the doctor was on time...and she called me into the consulting room and I sat in the chair and she smiled and said what can I do for you today?

And I didn't know.

I had no idea why I was there, I just knew I had an appointment - which it seems I made - and so I turned up.

I was horribly embarrassed. The doctor was terribly sweet and used the visit for routine matters, but to me this was just a big reality slap. There was I, all smug because I've been to memory aids and I have all these gadgets and gizmos and systems in place...and something like this happens...

Which just goes to show that sometimes alerts and alarms are just not enough.

1st November 2009

Baby Steps

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Its over three years now and the longed for recovery still has not arrived... Not that things haven't improved in that time, because of course they have...And we accepted long ago that things would never be the same...That didn't mean it was all bad, just different.

Still I have found myself unable to let go of the old life completely...So much of me, who I was, was tied up in that...tied up in the mountains of old notes and paperwork I was unable to let go of...Reports and info sheets I held onto because I might need them when I go back to work...

Time passed and when I go back to work became more unlikely. A clear out was in order and the old life materials were thinned out...but still many remained because I might need them one day...

Today another clear out and the work related reports became a pile of papers in the recycling bin. The recycling collection is tomorrow and they will be gone. Another baby step towards letting go of the old world and embracing the new.

Of course some papers escaped the cull. I am telling myself that these documents are of general interest, I am thinking of ways in which I might use them...Realistically they too will probably end up in the recycling bin on the next clear out...but for now, its baby steps.

29th October 2009

Like an old watch

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I'm still losing time...

Minutes, hours days...even weeks are lost and I don't know how ...But I know that while I am so terribly busy losing time the housework fairies are not doing their part and I really need to get a grip before my house is taken over by the cheery colony of dustbunnies I have noticed dancing about the place.

Don't get me wrong, I am not living in squalor and the environmental health people won't be calling anytime soon, but it seems ridiculous for us to be spending the weekend playing catch- up on household chores - especially when I am at home losing time all week.

With this in mind I have devised a simple  'houseworkings' timetable for the routine and  periodic tasks. I'm not sure how it'll work, but with nothing else to go on I split the house into areas and then once I had divided the areas up, I looked at when was the most logical day to do certain tasks. It seemed senseless to allocate cleaning out the fridge on the day after I have been food shopping for example.  I have allocated tasks to each weekday which allows the weekend to really be just for the catch up things that escaped during the week...and maybe we can start to reclaim the weekend for relaxation and fun...

It is already Thursday so I will be putting my freshly laminated plan into action from Monday. Fingers crossed...


23rd October 2009

Alls well that ends well

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Reflecting on yesterday with my husband (who was an absolute saint and guided me through all potential & actual meltdowns) and we decided that it had all worked out okay in the end.

I had been horribly stressed and  we were halfway there in the car before I even realised i wasn't wearing shoes...no time to turn back I filed it under yet another indignity and tried to ignore the fact that my navy blue rubber flip flops were peeking out from beneath chocolate- brown velvet...but by the end of the night, when comparing notes with another whose throbbing feet were encased in  a pair of beatuiful Pradas, it seems my footwear oversight actually worked in my favour. My grateful tootsies were cool and as happy as can be on their soft rubber cushion...

All really was well at the end of the night...

Celebration

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Today was the Pearl Anniversary (30th) celebration for our local Headway (Brain injury charity) and we had a fabulous time at a lovely celebratory event with sopeakers, films, arts and crafts exhibitions. I sold some of my  handmade greetings cards with proceeds going to Headway and others donated art work for auction...and the silent auctions were such fun. My Mum came along and fell in love with a gorgeous oak sculpture by William Fairbank, so I secretly bid on the item and won...One happy Mum got an early Christmas present.

It was a fab event. I am way too wired and tired to go into too much detail but it was fabulous. Thanks to all concerned.

12th October 2009

Days fly

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It really seems that days fly by and blur into the mist/mystery that is my life. Sometimes I can't help but wonder what happened to the past three years...

For the most part I muddle through but occasionally I am stumped when a face from the past drops into my life with a friendly enquiry about things are...what am I up to...where am I working...and that last question is the one that cuts the deepest.

Clearly I haven't yet fully come to terms with the loss of my corporate identity - so much of who we are is tied up in what we do for a living. I was destined for greatness and how do I tell  people that not only did I not fulfill my career potential but that since my injury I can't decide what to put on when I get up in the morning and don't know what I had for breakfast - or if I even ate breakfast.

Its hard knowing what to say...and even harder judging how much information I need to provide. Sometimes once I start I find it hard to stop the flow of information...and worse still, nine times out of ten  I am simply talking to fill a void. I have no short term memory and so don't have the details people want...and so I generalise. And people seem satisfied with that.

Of course there is always the possibility they wlak away scratching their collective heads and wondering what on earth I was on about...but if I don't hear them or see the looks of pity on their faces then I don't care. I can't care...

Today I got an email from an old friend. It was a how are you, how's things, where are you working these days email. I haven't been able to reply. I have flagged it for follow up...but I am not sure how...

At least with an email I won't have to see that look or hear that tone...

4th October 2009

I am the champion of sleeping late....

I was due to cook Sunday lunch today and my mother woke me when she called to enquire what time it was likely to be ready. Lunch became dinner because it was something past noon when she called and there was no way lunch was happening anytime soon. We end up having Lunner about 6pm. Its a good job my loved ones have learned to be flexible about meals and mealtimes.

The meal itself was a fair success. I still did too many vegetables - besides the roast potatoes, there was carrots, swede, cabbage, cauliflower, broccoli and sweetcorn ... but at least this time I stopped before I added in green beans and peas. What can I tell you - I like vegetables!  It could be worse...at least they are good for you


3rd October 2009


My body clock clearly needs new batteries. I dozed on and off last evening, went to bed at a reasonable hour and fell asleep easily...only to be wide awake at 5am....I don't want there to be two five o'clocks in my day. There should just be the one where my alert goes off to remind me its time to start thinking about making dinner. I don't need another five o'clock - especially if it comes a couple of hours before breakfast.

I am forcing myself to work through the jet lag...anmd it is work throughable...unlike the horrid brick wall fatigue. With the jet lag I can make busy for a few minutes and it grounds me a little...whereas when the fatigue hits it is simply all systems shut down. They are so clearly very different issues.

Of course I know i'm not functioning as well as I might whilst under the influence of jet lag and i am being extra careful to leave detailed notes of tasks undertaken in this foggy state. This jet lag isn't helping with my balance issues either. I feel more wobbly than usual...although that isnt helped by the cold I picked up on my travels. Sinus blockages always tip my balance a bit anyway...At least the health issues are minor and we know they will pass...

I think I am more impatient because
a) I don't want to be kiboshed by this. It is a matter of pride that I should be able to bounce back fairly easily

b) I know from experience (past notes) that holidays and illness seriously mess with my routine, which in turn affects my efficiency, and so I was determined to get back on track asap.

All of this just feels like it is slowing me down...but I will keep plodding on and I will get there in the end...Just watch me

1st October 2009

F...lagging

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Jet lag is brutal.... It seems to get worse with every trip. I am taking care to be as meticulous as possible in every task and in record keeping on tasks undertaken. I hope things settle pdq. This is unpleasant.

30th September 2009

Home again...

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We are back from our wonderful Pacific North West Adventure....and it was an adventure and we had fun.

The travelling was awful - just about everything that could go wrong on the outwward leg did go wrong - and the jetlag was absolutely brutal...but it was worth it.

We had a wonderful time exploring and we met up with old friends and met - and made - new ones along the way. It was a very scenic part of the world and a persons eyeballs can ache at the sight of all that natural beauty.

I was like a greedy magpie, taking up things to remind me of the trip...tickets stubs, receipts, a brochure, a bar of hotel soap, napkins, condiments...I have it all...and I took a gazillion photos - of just about everything from road signs, to spectacular lakes, mountains and waterfalls to the food that was put in front of me...and we took pictures of me standing places and with people...always smiling - a testament to the good times we enjoyed.

And now it is all a distant dream. The details are long gone but the warm fuzzy feeling remains. We had a good time, I know we did...

13th September 2009

Its all in the details

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We are off on our travels again soon. This is possibly one of our more adventurous trips and yet seems like it is all very last minute...to everyone else.

What they don't realise is that we have been talking about this for months. We have looked into the practical issues, sought advice from people with actual experience and local knowledge. We have considered and pondered and made lists.

We built an itinerary, realised it was too ambitious and built several more...before finally deciding on one...Then came the real work.

By the time our trip was actually booked and confirmed we were exhausted and in need of a holiday.

Prior to my injury the only input my husband had (or wanted) was a say in the general destination... he was - and still would be actually - willing to leave all the decisions to me. Post injury he can't do that. I hit melltdown long before I book anything - the vast array of options are overwhelming and I simply cannot choose.

Nor can I rely on my organisational abilities to get things right when booking - especially if as in this case it involves more than one hotel. So my reluctant hubby sits along side as we check and double check the details...

So we build lists...and lists and more lists...

I have a folder for travel. It contains all the essentials. Travel documents, directions of how to get form A to B, insurance, contact details of everyone we know in the areas we shall be visiting...they have all agreed to rescue us if need be.... I am so well prepared I could put a boy scout to shame....

People say I am so organised....perhaps I forgot to tell them why?

23rd August 2009


For a while now I have been experiencing rather a lot of very high mountain days...too many of them for my liking actually.

For the uninitiated, Very High Mountain Days are not good days...they are the days when reality comes crashing in and I am left feeling like I could cheerfully throw myself off a very high mountain and scream my way into oblivion...

Fortunately these do not last long and  there is a severe shortage of very High Mountains in this area - in fact I would have to drive quite a while to reach a rather steep hill - so there is no danger involved in the idea...and in any case - and just to be very clear - I am not in the least suicidal and do not have a death wish...Its just that some days Grrrr!!! ....well you get the picture...

So after too many VHM days I am delighted to find myself in the midst of a Sunny Sunday....Even though I am tired and more than a little stressed at the size of my ever growing to-do lists, I find myself feeling particularly positive and energised.

Outside the sun is shining but there is a light breeze to make the heat bearable (I do not cope well with hot weather), dinner is cooking and smells delicious and my sweetie will be home in about half an hour so all is well in the world.

I know better than to get too excited about feeling positive and energised - I know it will take work to keep up any kind of momentum, but if there was a very high mountain in my garden today I would simply sweep it aside to let the sunshine of Sunday come streaming in.

On Wednesday evening, despite having the headache from hell (the kind that makes you want to barf),  I dragged myself off to the Headway North London summer jolly billed at candlelit picnic... and I was so glad I went.

We were in a secluded private garden near the conservatory, shaded from the heat of the day. There was picnic food and (inspired choice) strawberries and cream and fun and games (giant Jenga & lawn croquet) on offer... but best of all was the chance to meet and talk with old friends and new.

Thanks to all of those who were involved in the planning and execution...It was really lovely.

11th August 2009

Continuity

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Film makers long realised that  continuity is vital in order for viewers to be able  to follow a movie and make sense of something that is put together from a series of little scenes, many of which are often filmed out of sequence. Such is the importance of continuity that they employ a team of people to ensure things run smoothly.
 
Even with this team working hard behind the scenes we often hear of the little things that slipped through the net. When a new blockbuster is released there is often something in the press about the number of continuity errors spotted by the devoted viewing public. A character wore a blue sweater and suddenly it was a green sweater, diamond earrings and no earrings seconds later...they ate a meal in this scene but seconds later they were hungry and looking for food, they slept and did not sleep, there was a car, bicycle,boat.....the boat morphed from a rowing boat to a sail boat, the captains beard disappeared when the ship hit the iceburg...

All ridiculous examples but when I think about it,  dealing with memory issues in life after brain injury can be a lot like living a movie without the continuity team. It can be muddled and confusing and very frustrtaing at times...but if you don't take it all too seriously, it can still be fun too.

10th August 2009

Strange

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It is very strange to start to read something and find your own face smiling back at you from the page...even stranger to read the article and to know it is about you, but to not really have that connection because the memories are simply not there to provide that ah...yes moment.

Its quite hard to explain how it feels because I have no reason to doubt that everything written there is true, and yet when I read it it is with the same interest as reading an article about a person I have never met and whose circumstances I do not know.

Its the same when I look back at holiday snaps. I see myself standing by a foreign landmark in the sunshine, smiling. I see pictures of my husband standing by the same foreign landmark in the sunshine smiling...occasionally there are pictures of us standing together by a landmark smiling... and I know I was there and I was having a good time because I am smiling...but I may as well be looking at someone else's snaps because I don't have the memeories to accompany the photos... I suppose the upside - and there is almost always an upside if you look hard enough - is that there is zero chance of me boring anyone with tales from our travels.... hahaha

Stuff happens

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And a lot of it seems to be happening right now...everything from dealing with things for parents who are away on holiday, to emergency trips to hospital with sick relatives, to the recent Twitter hacking leading to account suspension - me suspended? WTF...

Missed an important phone call so now have a delivery coming at 7am...I have a new phone and I'm still trying to get to grips with settings and recognising the blasted ringtone...I find it hard to embrace change with a smile sometimes when it can be such a pesky nuisance.

Heard from an old friend who has been having some issues over the meaning of it all...and indulged in a brief what's the point of it all debate...Actually came out feeling wiped...negativity saps energy...

Its late and I'm shattered but unable to settle to rest...will pay the price tomorrow for sure...zzzzzzzzzz


30th July 2009

Yikes...

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Another month slid by and I hardly noticed.

I have been having some trouble keeping track. It all stems from when we took our last trip...I always seem to have some problems adjusting and getting back into the swing of things but for some reason I never really got things back on track properly after that last trip...and without my systems all in place and all working I tend to get a bit lost.

I am trying to get things sorted again. Fingers crossed normal unreliable service will be resumed shortly.

9th July 2009

Guilty

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I am guilty of blog neglect...crime of the century? I think not ...but it is rather frustrating to drop by and find I haven't posted a word in weeks.
 
Is it because I have nothing to say? 

Could well be...

27th June 2009

Heatwave

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Ugh! Is all I can say.... I am slow and sluggish enough with adding excess heat to the equation...Does anyone else suffer in the heat? Any survival tips?

fed up with all this whinging...I know I'm the one whinging...but I don't have to like it lol!

21st June 2009

Questions

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Humans struggle - this is fact. The extent and nature of these struggles varies from one to another, but who can say if any one struggle is harder or more important than another?

In the midst of crises I have often heard people say something along the lines of how long can I be expected to carry on when.....(insert particular details here)

I have asked myself similar questions....but many times my unanswerables begin with the word WHY?

I still have days when I wonder why...Why do I bother? Why do I keep going? Not how...which would also be a valid question, but Why?

I often ask myself what questions too, and I find these are easier...what are my options? What should I do...now/ next/about/with...

I'm not getting answers to the why questions...but I cant help wondering what will happen when I know why?

18th June 2009

Crept up on me

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Another year older....How did that happen?

17th June 2009

A glass wall day

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Today I feel as though I walked smack bang into a  glass wall....and it stopped me in my tracks.

I am so tired - not the a few late nights catching up with you tired...but exhausted to the tips of your eyelashes tired.

I'm not sure where this has come from or why but I don't like it one little bit. I don't do well when I'm tired anmd I have rwecahed the point where I can't say Boo without feeling like I'm going to cry. Tghis feels like overload at its best...or do I mean worst?

Anyhow it sucks. I have gone beyond being able to just go relax for a while and I guess this will have to burn itself out...I fully expect I will crash and burn...should be a real spectacle.

11th June 2009

boring stuff

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Have been dealing with a few minor health issues, some redecorating at home and some ISP probs...all of which have combined to make me neglectful of anything that is not strictly essential to daily survival....Hopefully things will settle soon and I will be back to posting more regular ramblings.

31st May 2009

Received in the email

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Every so often someone sends a round robin email that makes me nod my head...this one arrived today (Thanks John) and it makes sense so I'm putting it here where I can find it again.

Written By Regina Brett, 90 years old, of The Plain Dealer, Cleveland , Ohio

To celebrate growing older,  I once wrote the 45 lessons life taught me.   It is the most-requested column I've ever written.  My odometer rolled over to 90 last August, so here is the column once more: 


1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Your job won't take care of you when you are sick.  Your friends and parents will.  Stay in touch.

5. Pay off your credit cards every month.

6. You don't have to win every argument.  Agree to disagree.

7. Cry with someone.  It's more healing than crying alone.

8. It's OK to get angry with God.  He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won't mess up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others.  You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn't be in it.

15. Everything can change in the blink of an eye.  But don't worry; God never blinks.

16. Take a deep breath. It calms the mind.

17. Get rid of anything that isn't useful, beautiful or joyful.

18. Whatever doesn't kill you really does make you stronger.

19. It's never too late to have a happy childhood.  But the second one is up to you and no one else.

20. When it comes to going after what you love in life, don't take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie.  Don't save it for a special occasion.  Today is special.

22. Over prepare, then go with the flow.

23. Be eccentric now. Don't wait for old age to wear purple.

24. The most important organ is the brain.
 
25. No one is in charge of your happiness but you.

26. Frame every so-called disaster with these words 'In five years, will this matter?'

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything.  Give time time.

31. However good or bad a situation is, it will change.

32. Don't take yourself so seriously. No one else does.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything you did or didn't do.

35. Don't audit life. Show up and make the most of it now.

36. Growing old beats the alternative -- dying young.

37. Your children get only one childhood.

38. All that truly matters in the end is that you loved.

39. Get outside every day.  Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.

41. Envy is a waste of time. You already have all you need.

42. The best is yet to come.

43. No matter how you feel, get up, dress up and show up.

44. Yield.

45. Life isn't tied with a bow, but it's still a gift."
 

30th May 2009

Duh!

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I haven't posted in a while...because I locked myself out. I've been having some ISP probs and the tech talked me through/into deleting all cookies and net history etc ...

which meant I had to log back in to all the sites I use on a regular basis...

which meant locating passwords...

which meant getting locked out of most of them because I couldn't remember the password...and in some cases my username DUH!

I have tried many different ways to record passwords without logging them in all one place with PASSWORDS written in bold capitals..and each time it fails. The sites which offer clues have about a 50:50 chance of success depending on the mood and sense of humour on the day I set them up...which in most cases was pre TBI and therefore mostly inaccessible.

I tried for ages not to have to resort to resetting my password...and in the end I decided what the heck...if I want to get in I'm going to have to admit I forgot my password...yet again...

I suppose I should be grateful that this is an automated service and there isnt someone sitting in a tech centre rolling their eyes at the number of resets on my account.

If you have any password management tips do please be sure to leave me a message...this is one area where I could really use some practical suggestions....

10th May 2009

Ouch!

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I have been in the middle of a nasty flare for a while now (not sure how long but it feels like forever) and it finally got the better of me. I am battling back and will master this thing but pain, lack of sleep and heavy duty pain meds do not help with cognitive function...

so best I keep quiet for a while methinks...

especially as I am still extremely fluent in curse words!
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