Thursday, 19 September 2013

22. What's good about it?

I have always been a person for whom the 'glass is half-empty'. A pessimist, some might say! Very much an 'Eeyore character'; perhaps even Victor Meldrew! I would justify this by saying that if you expect the worst of people or situations, you're less likely to feel disappointed or let-down. I tended to have high expectations - which were rarely met, was very critical, and my outlook on life could be described as 'negative'. (At this point I should say that I am not proud of certain aspects of this attitude, and it was not popular with those close to me).
Following my stroke - in 1999 - I became a 'glass-half-full' person. A case of having-to, really. I was so relieved that I wasn't ...erm...dead, and glad that I was surrounded by my loved-ones, that anything else was a bonus. So any slight gain (however small) was a cause for celebration, and it became a sport to push the boundaries and bend the rules in order to squeeze out that extra bit of progress. For years my thoughts were pre-fixed with 'at least I can ...', or 'I'll find another way of doing ...'. Being thankful for small mercies became an art-form! Not even two bouts of serious illness or a brain-tumour could dampen my gung-ho spirit (although, I have to admit to one Major Life Event which happened about the same time and knocked me for six) - and I played them down ...bouncing back as quickly as possible.
All this positivity is completely out of character! And extremely tiring!
I'll not beat about the bush...It sucks!...(as my daughter would say)
The list of things I can't do is endless ...and it broke my heart saying No to my grandson when he asked me to play with him!
And yes, I know I should be glad that I'm even here to see my grandchildren,..
I'm back in my comfort-zone! Alongside Eeyore and Victor Meldrew! And if one more person tells me to 'Keep smiling'- I shall scream! (Except that I can't)
Grumpy Old Woman? Yes, that's me!

Thursday, 22 August 2013

21. A question of balance

It  seems to come with the territory - having a stroke affects your sense of balance.

I never had much of a head for heights, but I could keep that pretty much under control. I remember, many years ago taking my younger daughter to St.Paul's Cathedral. She insisted climbing up to The Whispering Gallery. I coped with that by clinging to the wall around the outer edge (but drew the line at going outside at the top of the dome!). On another occasion I accompanied that aforementioned daughter to the top of York Minster. This time I did venture 'outside', but mercifully the 'outside' was surrounded by wire-netting. So I laced my fingers through the mesh and stood very still, while she explored enthusiastically.
Now it's a very different story! For the first few years following my stroke, I was able to subdue the feelings of panic (quite often by closing my eyes tight and leaving things to someone else). For example, whenever we visited my in-laws we had to take a ferry to an island off the coast of Scotland. Obviously I couldn't climb the steps from ship to shore. So my wheelchair was fixed to a contraption with caterpillar-tracks, which could be 'driven' by a member of staff over the steps. Depending on the height of the was a long way down! I would shut my eyes tight, breathe deeply, and put my trust in those around me.
I couldn't face doing that now...
I can't even bear to go anywhere near the edge of the kerb, and the mezzanine floors in some shops fill me with horror!
Not for the first time since I had the stroke, I've had to accept that 'mind over matter' just will not work on these occasions. I KNOW that I am extremely unlikely to fall over a cliff, from inside a car parked in a cliff-top car-park ...yet leave me alone in that car, and I quickly become a panicking, quivering wreck. I am ashamed! 
I have  dreadful trouble going over suspension bridges in a car, and will do anything to avoid windows more than two floors up. In short, I can only function with a modicum of self-respect on the ground or a completely enclosed upper floor. I used to beat myself up over this; thought I should 'pull myself together', and tried all sorts of relaxation techniques.
Then, one beautiful sunny day, I was out in the garden. I went around to the front of the house - a slightly more exposed position, overlooking hedges and fields. I looked up at the clear blue sky - and the world started spinning! I fell the same sensations of panic as when I'm up high. It all became clear. My sense of balance was completely distorted! Now, for all I know, this may be a well-recognised side-effect of stroke ...but it has taken me thirteen years to work it out for myself!
I'm no longer so hard on myself, am content to let others take control more often, and feel quite justified in refusing to get into situations where I wouldn't cope well.

"It's just one of those things"...

Thursday, 11 July 2013

20. And now for something completely different ...

It's an old cliche...'Where does the time go?'
Yet so true.,.where has it all gone?
Still I think like the lithe, young woman I once was
Though my body is broken, and old-age is rearing its head.

Who is that stranger staring back at me
From the mirror held up for me in front of my face?
I don't know that twisted smile,
The grey hair where it was once red.

Once a young mum, now I'm a grandmother 
Without a grandfather by my side, I face the future alone.
Plans, ambitions thwarted -
Some days it's difficult to go on.

But I'm not really alone;
My babies now have babies of their own.
And like a tree, my family grows - with me, the matriarch,
Its trunk. My friends, as a pool, widening and deepening, 
With the falling rain.

So, my life is very different now 
And just surviving is toil enough ...'broken but unbowed'
Is how I am! Now I am learning a new furrow to plough.
Sometimes I can look around me, and sometimes even say 
Life is good! And THIS is where the time went!

Tuesday, 2 July 2013

19. Miracle Cure!

I got very excited the other week, hearing about the (small) study that has been done in Glasgow, where doctors have made improvements in stroke patients' movement and balance, with the help of stem-cell therapy. In the same week, I was listening to a radio-programme about the history of disability. One of the topics covered was that of the 'miracle cure', the hope of which has been with us down the ages. People have sought cures for the most hopeless of cases since time immemorial, and I have to confess that I'm one of thought if not deed!
When I had 'my' stroke (back in 199), stem-cell therapy was in its infancy. Very much at the research and experimental stage. I remember newspaper photographs of mice with (human) ears growing on their backs. It seemed to be forging ahead so quickly that we talked with confidence of 'within ten years there will be some treatment that will offer, if not an outright cure, at least significant improvement.' Well, ten years have come and gone. I am still paralysed and talk like Darth Vader on a bad day (if I talk at all!). The longed-for cure still hasn't materialised. 
I am, naively, still hoping for a miracle cure and stem-cell therapy seems the closest thing to it. But research into it seems to have encountered many hurdles and pitfalls along the way, though it has rarely been far from the headlines. In the early years there were many reports of people travelling to Eastern Europe for treatment ... was this a type of modern-day pilgrimage? (And in the eyes of some people, stem-cell research is the work of the devil; quite the opposite of a miracle!)  It seems pretty miraculous to me ...
Commonsense tells me that it won't be miracles that will provide effective treatments for stroke, but hard slog, and slow, painstaking grind. I wonder whether they will come in time to help me! Meanwhile I shall keep hoping for a miracle!

Wednesday, 29 May 2013

18. Basic Nursing Care

It has been a long time since I 'put pen to paper' (so to speak)...truth is, I am so slow at doing what little I can, that I just couldn't face starting what is in fact a herculean task. Sorry for myself? Yes!
Not that I've been short of opinions
Some time ago, I was horrified by the news of the suggestion that nursing students should first spend a year on the wards doing basic tasks. My horror was not at the suggestion itself, but that it needed to be made in the first place! Admittedly, it is a long time since I trained as a nurse, and I am aware of the possibility of looking back with rose-tinted spectacles, but I remain convinced that nothing beats learning 'on the job'. My recent experience of being on the receiving-end of nursing-care have proved to me (if proof were needed) that possession of  a University degree in nursing is no guarantee of making a good nurse.  'Basic Nursing Care' (such things as help with eating, drinking and keeping clean) does not change down the years: and it is this that, according to many current criticisms, has 'fallen by the wayside'. It isn't glamorous, but Nursing, without it, cannot be true nursing. I do not believe that it can be treated as an academic subject; only bits of it can be taught, though it can be developed and the foundations built upon. Careful selection is imperative; I maintain that many are 'slipping through the net' because they don't have the qualifications for a degree-course, while totally unsuitable people undergo nurse-training because they do. The majority of kind and caring 'nurses' (some qualified, some not) I encountered while I was a patient, did not have a degree.
I could bash on about this endlessly, and doubtless the debate will continue ...
So, now that I am on the receiving-end and my disabilities make me so vulnerable, the basic kindness and care are spotlighted, and have become increasingly vital. 
...Even when life is hard, and things are getting me down, some subjects still get me 'hot under the collar' !...

Sunday, 10 March 2013

17. Mothering Sunday

Mothering Sunday. Fourteen years ago today, I was sitting at a Church service, when the world around me started to spin. Fourteen years since my world, and that of my family and close friends, was tipped upside-down. That's a long, long time! In those fourteen years so much has happened. My two daughters have been through University, and each has qualified in her chosen profession. Both have married, and my grandson was born. My husband has left me. I have had septicaemia twice and a brain-tumour. (I suspect that I am not alone in experiencing similar Major Life Events in that space of time - but today is a day of reflection for me). So many plans thwarted, and thoughts of the future fill me with terror! It's very easy to slip into feeling sorry-for-myself.
But the clue is in the title of these blogs: 'Survivor'. One of my daughter's friends has described me as 'indestructible'. H'm! I don't know about that! But it does seem that cats aren't the only ones with nine lives!   I really do have much to be thankful for.
Survival in the first place was due to the efforts of others, and my continued survival - flourishing even - depends heavily on the efforts of others. But good fortune has played its part too! It was very fortunate that the clot which caused the stroke lodged where it did (any higher, and I wouldn't have survived at all). It was also fortunate that I 'got back' some sort of speech (weird though it is), and the meagre movement in my thumb (with which I operate all sorts of electronics). I therefore have a modicum of independence, and live in - and run -  my own home, for which I am very thankful All through the efforts of others of course! I also have a loving and supportive family and good friends, for which I am enormously thankful.
So, despite the very great temptation to wallow in self-pity this and every Mothering Sunday, perhaps I should focus not only on being thankful for my own Mother, but for so much more as well.  

Tuesday, 19 February 2013

16. Environmental Controls

The man who installed and has maintained my Environmental Controls retires this month; I shall feel bereft! Doubtless there will be a replacement for him, but things just won't be the same! He has 'been around' right from the start - when I was discharged home in 2000, and it gave me a sense of security knowing that he would fix any faults or add anything new I got to my existing system. This 'loss' set me thinking - how my attitude to this has changed over the years!
I had never heard the term before. Environmental Controls. I don't even remember what I imagined, when they were mentioned to me - soon after I arrived in the rehabilitation unit. I do remember vividly being very resistant to the idea. It was tantamount to giving-up!  I was visited one afternoon by the Senior Registrar (a very nice, very earnest lady), who suggested I might try 'Environmenal Controls'. I was indignant! Be dependent on a machine? Never! The ability to switch a light off, turn the TV on, or open the curtains was still fresh in my mind. I could see no reason why, given time and hard work, I shouldn't do them again. Naive optimist!
Whenever I was in bed, or sitting up in a chair, I was rigged up to a metal box, which was divided into sections, each with a little light. These lit up in sequence, with an electronic voice announcing each function. With the help of this, I could call a nurse, switch on a light, turn on the fan or the TV. Bear in mind that this was 1999, and it did seem pretty basic. But it did give me some level of independence, even though I felt 'tethered', and  even though I used it with grudging gratitude.
When it was time for me to be discharged home, I was visited by some-one from Social Services, who showed me a much more up-to-date version. This was far more acceptable! Much smaller and portable  - and here's the bonus - and it wouldn't speak to me! I felt a whole lot better about it.I could have certain things (e.g. the TV, radio, automated curtains, telephone) programmed 'into' it, and could have radio-controlled plugs/sockets for smaller items (e.g. table-lamps, fans) - and a light and beep showed which would be activated. Much more discreet. And genuinely useful
Over  the months and years I warmed to 'my box'. I had one for use in the daytime and one for at night. I wear the 'day-box' around my neck, (and operate it with my fingers - or on a bad day with my fist!), and  I have a pillow-switch for operating the 'night-box'. I would not be without 'environmental controls' now. I think it could be said that I am a convert. I look around me, working out what else can be automated; - I must be an environmentalist's nightmare as so many things are on 'stand-by'!
How my attitude has changed over the many years that I have been paralysed. I have learned that - in this case anyway - 'mind over matter' doesn't work, and I need all the help I can get. Environmental Controls are a great help. With them I have a level of independence far greater than would ever be possible without them!