tag:blogger.com,1999:blog-8731942432874281452024-02-21T02:16:11.862+00:00Scribblings of a Stroke SurvivorStroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-873194243287428145.post-57199688070503659372013-09-19T13:10:00.000+01:002013-09-19T13:10:27.207+01:0022. What's good about it?<span style="font-size: large;">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).</span><br />
<span style="font-size: large;">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.</span><br />
<span style="font-size: large;">All this positivity is completely out of character! And extremely tiring!</span><br />
<span style="font-size: large;">I'll not beat about the bush...It sucks!...(as my daughter would say)</span><br />
<span style="font-size: large;">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!</span><br />
<span style="font-size: large;">And yes, I know I should be glad that I'm even here to see my grandchildren,..</span><br />
<span style="font-size: large;">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)</span><br />
<span style="font-size: large;">Grumpy Old Woman? Yes, that's me! </span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com1tag:blogger.com,1999:blog-873194243287428145.post-33185059579235911382013-08-22T20:30:00.002+01:002013-08-22T20:30:42.575+01:0021. A question of balance <span style="font-size: x-large;"><span style="font-family: inherit;">It seems to come with the territory - having a stroke affects your sense of balance.</span></span><br />
<br />
<span style="font-size: x-large;"><span style="font-family: inherit;">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.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">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 tide...it was a long way down! I would shut my eyes tight, breathe deeply, and put my trust in those around me.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">I couldn't face doing that now... </span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">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!</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">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! </span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">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.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">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!</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">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.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;"><br /></span></span>
<span style="font-size: x-large;"><span style="font-family: inherit;">"It's just one of those things"...</span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com1tag:blogger.com,1999:blog-873194243287428145.post-10236964084800830952013-07-11T19:09:00.000+01:002013-07-11T19:09:51.985+01:0020. And now for something completely different ...<span style="font-size: large;">It's an old cliche...'Where does the time go?'</span><br />
<span style="font-size: large;">Yet so true.,.where has it all gone?</span><br />
<span style="font-size: large;">Still I think like the lithe, young woman I once was</span><br />
<span style="font-size: large;">Though my body is broken, and old-age is rearing its head.</span><br />
<br />
<span style="font-size: large;">Who is that stranger staring back at me</span><br />
<span style="font-size: large;">From the mirror held up for me in front of my face?</span><br />
<span style="font-size: large;">I don't know that twisted smile,</span><br />
<span style="font-size: large;">The grey hair where it was once red.</span><br />
<br />
<span style="font-size: large;">Once a young mum, now I'm a grandmother </span><br />
<span style="font-size: large;">Without a grandfather by my side, I face the future alone.</span><br />
<span style="font-size: large;">Plans, ambitions thwarted -</span><br />
<span style="font-size: large;">Some days it's difficult to go on. </span><br />
<br />
<span style="font-size: large;">But I'm not really alone; </span><br />
<span style="font-size: large;">My babies now have babies of their own.</span><br />
<span style="font-size: large;">And like a tree, my family grows - with me, the matriarch, </span><br />
<span style="font-size: large;">Its trunk. My friends, as a pool, widening and deepening, </span><br />
<span style="font-size: large;">With the falling rain. </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">So, my life is very different now </span><br />
<span style="font-size: large;">And just surviving is toil enough ...'broken but unbowed'</span><br />
<span style="font-size: large;">Is how I am! Now I am learning a new furrow to plough.</span><br />
<span style="font-size: large;">Sometimes I can look around me, and sometimes even say </span><br />
<span style="font-size: large;">Life is good! And THIS is where the time went! </span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com1tag:blogger.com,1999:blog-873194243287428145.post-88000917185387431292013-07-02T19:44:00.000+01:002013-07-02T19:44:03.114+01:0019. Miracle Cure!<span style="font-size: x-large;">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 them...in thought if not deed!</span><br />
<span style="font-size: x-large;">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. </span><br />
<span style="font-size: x-large;">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 ...</span><br />
<span style="font-size: x-large;">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!</span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com0tag:blogger.com,1999:blog-873194243287428145.post-81696579138056931912013-05-29T15:23:00.000+01:002013-05-29T15:23:09.060+01:0018. Basic Nursing Care <span style="font-size: x-large;">It has been a long time since I 'put pen to paper' (so to speak<span style="font-size: x-large;">)...<span style="font-size: x-large;">truth is, I am so slow at d<span style="font-size: x-large;">oing what little I can<span style="font-size: x-large;">, that I just couldn't face starting what is in fact a <span style="font-size: x-large;">herculean <span style="font-size: x-large;">tas<span style="font-size: x-large;">k</span>. Sorry for myself<span style="font-size: x-large;">? Yes!</span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">Not that I've been short of opinions<span style="font-size: x-large;">! </span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">Some time ago<span style="font-size: x-large;">, I was horrified by the new<span style="font-size: x-large;">s of the suggestion that nursing <span style="font-size: x-large;">students should first spend a year on the <span style="font-size: x-large;">wards doing basic tasks<span style="font-size: x-large;">. My horror was not at the suggestion itself<span style="font-size: x-large;">, but that it <span style="font-size: x-large;"><u>needed to <span style="font-size: x-large;">be made in the first place!</span></u><span style="font-size: x-large;"> Admittedly<span style="font-size: x-large;">, <span style="font-size: x-large;">it is a long time since I trained as a nurse<span style="font-size: x-large;">, and I am aware of the possibility of <span style="font-size: x-large;">looking back with rose-tinted spectacle<span style="font-size: x-large;">s,</span> b</span>ut I remain convinced that nothing beats learning 'on the job'. My recent experience of being on the receiving<span style="font-size: x-large;">-end of nursing<span style="font-size: x-large;">-care have proved to <span style="font-size: x-large;">me (if proof were needed) that possession of a University degree in nursing is no guarantee of making a good <span style="font-size: x-large;">nurse<span style="font-size: x-large;">.</span></span></span></span></span> '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 </span></span></span></span></span></span></span></span></span></span></span></span>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.</span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">I could bash on about this endlessly, and doubtless the debate will continue ...</span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">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. </span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">...Even when life is hard, and things are getting me down, some subjects still get me 'hot under the collar' !...</span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"> </span></span></span></span></span></span></span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com1tag:blogger.com,1999:blog-873194243287428145.post-89871472681348236262013-03-10T16:08:00.000+00:002013-03-10T16:08:52.955+00:0017. Mothering Sunday <span style="font-size: x-large;">Mothering Sunday<span style="font-size: x-large;">. Fourteen years ago today<span style="font-size: x-large;">, I was <span style="font-size: x-large;">sitting at a Church service<span style="font-size: x-large;">, when the world around me started to s<span style="font-size: x-large;">pin. Fourteen years since my world<span style="font-size: x-large;">, and that of my family and c<span style="font-size: x-large;">lose friends<span style="font-size: x-large;">, was t<span style="font-size: x-large;">ipped upside-down<span style="font-size: x-large;">. That's a long, long time<span style="font-size: x-large;">! In those fourteen years so much has happened. My two daughters have been through University<span style="font-size: x-large;">, and each has qual<span style="font-size: x-large;">ified in her chosen profession<span style="font-size: x-large;">. Both have married<span style="font-size: x-large;">, and my grandson was born<span style="font-size: x-large;">. My h<span style="font-size: x-large;">usband has left me<span style="font-size: x-large;">. I have had septicaemia twice and a brain-tumour<span style="font-size: x-large;">. (I s<span style="font-size: x-large;">uspect that <span style="font-size: x-large;">I am not alone in exper<span style="font-size: x-large;">iencing s<span style="font-size: x-large;">imilar Major L<span style="font-size: x-large;">ife Events in that space of time - but today is a day of reflection for me<span style="font-size: x-large;">). So many plans thwarted<span style="font-size: x-large;">, and thoughts of the future fill me with terror</span>! It's <span style="font-size: x-large;">very easy to s<span style="font-size: x-large;">lip into feeling sorry<span style="font-size: x-large;">-for-myself<span style="font-size: x-large;">.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">But the clue is in the title of these blogs: 'Survivor'. One of my daughter<span style="font-size: x-large;">'s friends has described me as 'indes<span style="font-size: x-large;">tructible'. H'm! I don't know about that! But it does seem that cats aren't the only ones with nine lives! </span> I really do have much to be thankful for<span style="font-size: x-large;">.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">Survival in the first place was due to the efforts of others<span style="font-size: x-large;">, and <span style="font-size: x-large;">my continue<span style="font-size: x-large;">d survival -<span style="font-size: x-large;"> flourish<span style="font-size: x-large;">ing even - depends heavily on the efforts of others<span style="font-size: x-large;">. But good fortune has played its part too! It was very fortunate that the cl<span style="font-size: x-large;">ot which caused the stroke <span style="font-size: x-large;">lodged where it did (any hi<span style="font-size: x-large;">gher<span style="font-size: x-large;">, and I wouldn't have survived at all). It was also fortunate that I 'got back<span style="font-size: x-large;">' some sort of speech (weird though it <span style="font-size: x-large;">is), and the meagre movement in my th<span style="font-size: x-large;">umb (with which I operate all sorts of e<span style="font-size: x-large;">lectr<span style="font-size: x-large;">onics). I therefore have a modicum of <span style="font-size: x-large;">independence<span style="font-size: x-large;">, and live in - and run -</span></span></span></span> </span></span></span>my <span style="font-size: x-large;">own home, for which I am very <span style="font-size: x-large;">thankful<span style="font-size: x-large;"> All <span style="font-size: x-large;">through the efforts of others of course<span style="font-size: x-large;">! I also have a <span style="font-size: x-large;">lovin<span style="font-size: x-large;">g and supportive family and good friends<span style="font-size: x-large;">, for which I am enormously thankful<span style="font-size: x-large;">.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">So<span style="font-size: x-large;">, despite the very great temptation <span style="font-size: x-large;">to wal<span style="font-size: x-large;">low in self-pity this and every Mothering Sunday<span style="font-size: x-large;">, perhaps I should focus not only on being thankful for my own Mother<span style="font-size: x-large;">, but for so much more as well.</span></span></span> </span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com1tag:blogger.com,1999:blog-873194243287428145.post-45388689301912323962013-02-19T15:23:00.000+00:002013-02-19T15:23:26.503+00:0016. Environmental Controls <span style="font-size: x-large;">The man who installed and has <span style="font-size: x-large;">maintain<span style="font-size: x-large;">ed my Environmental Controls retires this month<span style="font-size: x-large;">; I shall feel bereft! Dou<span style="font-size: x-large;">btless there will be a replacement for him, but things just won't be the same! He has 'been around<span style="font-size: x-large;">' right from the s<span style="font-size: x-large;">tart - when I was discharged home in 2000, and <span style="font-size: x-large;">it gave me a sense of security knowing that he would fix any faults or ad<span style="font-size: x-large;">d any<span style="font-size: x-large;">thing new I got to my existing system<span style="font-size: x-large;">. This 'loss' set me thinking - how my attitude to this has changed over the years<span style="font-size: x-large;">!</span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">I had never heard the <span style="font-size: x-large;">term before<span style="font-size: x-large;">. En<span style="font-size: x-large;">vironmental Controls<span style="font-size: x-large;">. I don't even remember what I imagined<span style="font-size: x-large;">, when they were me<span style="font-size: x-large;">ntioned to me - soon after I arrived in the rehabilitation unit. I do remember vividly being very resistant</span></span></span></span></span></span> to the idea. It was tantamount to giving<span style="font-size: x-large;">-up! I was visited one afternoon by the Senior Registrar (a very nice<span style="font-size: x-large;">, very earne<span style="font-size: x-large;">st lady<span style="font-size: x-large;">), who suggested I might try 'Environmenal Controls<span style="font-size: x-large;">'. I was indignant! Be dependent on a machine<span style="font-size: x-large;">? Never! The ability to switch a <span style="font-size: x-large;">light off, turn the TV on, or open the curtains was still fresh in m<span style="font-size: x-large;">y mind<span style="font-size: x-large;">. I could see <span style="font-size: x-large;">no reason why, given time and <span style="font-size: x-large;">hard work, I should<span style="font-size: x-large;">n't do them again<span style="font-size: x-large;">. Naive optimist<span style="font-size: x-large;">!</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">W<span style="font-size: x-large;">henever </span></span>I was in <span style="font-size: x-large;">bed, or sitting up in a chair<span style="font-size: x-large;">, I was r<span style="font-size: x-large;">igged up to a metal box<span style="font-size: x-large;">, which was di<span style="font-size: x-large;">vided into sections<span style="font-size: x-large;">, each with a little light<span style="font-size: x-large;">.</span></span></span></span> These lit up in sequence<span style="font-size: x-large;">, with an electronic voice announcing each function<span style="font-size: x-large;">. With the help</span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span>of this<span style="font-size: x-large;">, I could call a nurse, switch o<span style="font-size: x-large;">n a <span style="font-size: x-large;">light<span style="font-size: x-large;">, turn on the fan <span style="font-size: x-large;">or the TV. Bear in mind that this <span style="font-size: x-large;">was 1999, and it did seem pretty basic<span style="font-size: x-large;">. But it did give me some level of independen<span style="font-size: x-large;">ce, even though I felt 'tethered', and </span></span></span></span></span></span></span> </span>even though I <span style="font-size: x-large;">used it with grudging gratitude<span style="font-size: x-large;">.</span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">When it was t<span style="font-size: x-large;">ime for me to be discharged home<span style="font-size: x-large;">, I was visited by some-one from Social Services<span style="font-size: x-large;">, who showed me a much more up-to-date version<span style="font-size: x-large;">. This was far more acceptable<span style="font-size: x-large;">! Much smaller and portable </span></span>- and here's the bonus - and it wouldn't speak to me! I felt a whole lot better about <span style="font-size: x-large;">it<span style="font-size: x-large;">.<span style="font-size: x-large;">I could have certain things (e.g. the TV, radio<span style="font-size: x-large;">, automat<span style="font-size: x-large;">ed curtain<span style="font-size: x-large;">s<span style="font-size: x-large;">, telephone)</span> </span></span></span>programmed 'into' it<span style="font-size: x-large;">, and could have radio-controlled</span></span></span></span></span></span></span> plugs/sockets for smaller <span style="font-size: x-large;">items (e.g. ta<span style="font-size: x-large;">ble-lamps<span style="font-size: x-large;">, fans) <span style="font-size: x-large;">- and a light and beep showed which would be ac<span style="font-size: x-large;">tivated. Much more discreet. And genuinely useful<span style="font-size: x-large;">! </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">Over </span></span></span></span></span></span>the months and <span style="font-size: x-large;">years I warmed to 'my box'. I had one for use in the daytime <span style="font-size: x-large;">and one for at night<span style="font-size: x-large;">. I </span></span>wear <span style="font-size: x-large;">the </span>'day-box' around my neck<span style="font-size: x-large;">, (and operate it with my fingers - or on a bad day with my fis<span style="font-size: x-large;">t!), and </span></span> I have a pillow<span style="font-size: x-large;">-switch for opera<span style="font-size: x-large;">ting the 'nigh<span style="font-size: x-large;">t</span>-box'. I would not be without '<span style="font-size: x-large;">environmental controls' </span>now<span style="font-size: x-large;">.</span></span></span> </span>I think it could be said that I am a convert. I look around me, working out what else can be automated<span style="font-size: x-large;">;<span style="font-size: x-large;"> - </span>I m<span style="font-size: x-large;">ust be an environmental<span style="font-size: x-large;">ist's ni<span style="font-size: x-large;">ghtmare as so many things are on 'stand-<span style="font-size: x-large;">by'<span style="font-size: x-large;">!</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">How my attitude has changed over the many years that I have been paralysed<span style="font-size: x-large;">. I have learned that - in th<span style="font-size: x-large;">is case anyway - 'mind over matter<span style="font-size: x-large;">' doesn't work<span style="font-size: x-large;">, and I need <span style="font-size: x-large;">all the help I can get<span style="font-size: x-large;">. E<span style="font-size: x-large;">nvironmental Controls are a great help<span style="font-size: x-large;">. With them <span style="font-size: x-large;">I have a level of independence far greater than would ever be possible without them<span style="font-size: x-large;">!</span></span></span></span></span></span></span></span></span></span> </span></span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com0tag:blogger.com,1999:blog-873194243287428145.post-66645870174235012932012-12-23T14:57:00.000+00:002012-12-23T14:57:10.307+00:0015 ...and another thing ...<span style="font-size: x-large;">A fri<span style="font-size: x-large;">end remarked the other day how nativity plays (in schools<span style="font-size: x-large;">) had <span style="font-size: x-large;">changed o<span style="font-size: x-large;">ver the years<span style="font-size: x-large;">, and were now pretty much unrecognisable as such<span style="font-size: x-large;">. I have even heard of an <u>octopus</u> featuring in a recent nativity play! Whatever is going on?</span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">I suppose this sort of thing is in the name of <i>inclusivity</i>. <span style="font-size: x-large;">It set off two trains of thought .....</span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">It is <span style="font-size: x-large;">of course a multi-cultural society that we are part of today. And multi-faith!</span> </span>And <span style="font-size: x-large;">some of our schools have an increasing<span style="font-size: x-large;">ly large proportion of non-Christian and minority-group </span></span>raised children<span style="font-size: x-large;">. <span style="font-size: x-large;">And</span> it stands to reason that schools have no wish to pre<span style="font-size: x-large;">ven<span style="font-size: x-large;">t any child participating in an end-of-term production<span style="font-size: x-large;">. But at the expense of distorting a well-loved, traditional story? Surely it would be better to learn about other culture<span style="font-size: x-large;">s' traditional stories<span style="font-size: x-large;">, and to learn respect and acceptance of <span style="font-size: x-large;">all the <span style="font-size: x-large;">diversities of cu</span></span></span></span></span></span></span></span>lture and faith in <span style="font-size: x-large;">modern society<span style="font-size: x-large;">. Surely better than this constant 'dumbing-down', lest some-one <span style="font-size: x-large;">might be offended<span style="font-size: x-large;">!</span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">And what of including everybody<span style="font-size: x-large;">? Well, the nativity story does not specify <span style="font-size: x-large;">n<span style="font-size: x-large;">umbers of shepherds<span style="font-size: x-large;">. Or stars. Or angel<span style="font-size: x-large;">s. There is no mention of octop<span style="font-size: x-large;">i.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">My second train of thought <span style="font-size: x-large;">went something like this<span style="font-size: x-large;">: <span style="font-size: x-large;">it seems almost as though we are ashamed to have a faith! Stastitically,<span style="font-size: x-large;">apparently now there are fewer people decla<span style="font-size: x-large;">ring themselves to belong to the major religions<span style="font-size: x-large;">, yet alo<span style="font-size: x-large;">n</span>e the Established Ch<span style="font-size: x-large;">u</span>rch. But<span style="font-size: x-large;">, if Mental Health experts are to be believed (and I see no reason to doubt this), a great proportion of the population is still searching for spiritual enrichment: something that used to be 'provided'<span style="font-size: x-large;">by one's faith in God (of whichever religion<span style="font-size: x-large;">).</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">Personally<span style="font-size: x-large;">, I have often found the at<span style="font-size: x-large;">heist stance rather arrogant. It seems to be built on a <i>certainty<span style="font-size: x-large;">, </span></i><span style="font-size: x-large;"><span style="font-size: x-large;">and the suggestion is that <i>scientific knowledge </i>will ul<span style="font-size: x-large;">timately provide us with answers to all our question<span style="font-size: x-large;">ing and searching<span style="font-size: x-large;">. That is all very well. I once tried to learn physics. Very early on<span style="font-size: x-large;">, it <span style="font-size: x-large;">became <span style="font-size: x-large;">apparent that much of the 'facts' were actually 'faith'(which<span style="font-size: x-large;">, as we know<span style="font-size: x-large;">, means 'hope', or 'trust'), not certainty<span style="font-size: x-large;">, which I had been led to believe</span>. This was a leap of faith too far for me, and I made </span></span></span></span></span></span></span></span></span></span></span></span>no further progress<span style="font-size: x-large;">.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">Soon after the stroke<span style="font-size: x-large;">, the doctor in charge of my care was showing me the angio<span style="font-size: x-large;">grams (X-ray<span style="font-size: x-large;">s of blood vessel<span style="font-size: x-large;">s) of my head and neck<span style="font-size: x-large;">. The clot which had caused the stroke could clearly be seen (or rather its effects on the surrounding tissues<span style="font-size: x-large;">). If it had come to rest a millimetre further on<span style="font-size: x-large;">, I would not have survived<span style="font-size: x-large;">. The doctor turned to me </span></span></span></span></span></span></span></span>and said 'somebody up there was looking after you!'. I nodded in agreement<span style="font-size: x-large;">. But neither of us meant that literally<span style="font-size: x-large;">. Neither of us thought of a man (or of an angel<span style="font-size: x-large;">), sit<span style="font-size: x-large;">ting up in the sky and looking down deciding that I should live. <span style="font-size: x-large;">(S</span>ome people would consider it pure chance that I survived<span style="font-size: x-large;">)</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">Similar<span style="font-size: x-large;">ly<span style="font-size: x-large;">, many folk have suggested that I should have turned my back on The Church<span style="font-size: x-large;">, as I had the stroke during a Mothering Sunday Service<span style="font-size: x-large;">. 'How could God let that happen, especially in His own H<span style="font-size: x-large;">ouse?', they say. Well, I don't believe He did, but that is a theological discussion for another time and place<span style="font-size: x-large;">!</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">So, </span></span></span></span></span>where did these trains of thought <span style="font-size: x-large;">end up<span style="font-size: x-large;">? Nowhere really; they just went round and round<span style="font-size: x-large;">. But 'on the journey<span style="font-size: x-large;">', my conviction was re<span style="font-size: x-large;">inforced that whatever one's faith<span style="font-size: x-large;">, it remains a mystery that <span style="font-size: x-large;">s<span style="font-size: x-large;">hould be cherished and celebrated<span style="font-size: x-large;">, and respected by all.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com0tag:blogger.com,1999:blog-873194243287428145.post-68902282590801699242012-11-21T19:02:00.000+00:002012-11-21T19:02:12.084+00:0014. Christmas is coming ...<span style="font-size: x-large;">I once was accused of wanting a 'warm, fuzzy feeling<span style="font-size: x-large;">' from the celebration of Christmas<span style="font-size: x-large;">. Yes! Unashamedly! It is<span style="font-size: x-large;">, after all<span style="font-size: x-large;">, supposed to be a season of 'great joy'! Yet all around me I see <span style="font-size: x-large;">and hear exhortations to spend <span style="font-size: x-large;">more money<span style="font-size: x-large;">, dress up more glamorous<span style="font-size: x-large;">ly, entertain more lavish<span style="font-size: x-large;">ly. There is a large amount of stress<span style="font-size: x-large;"> involved, it seems<span style="font-size: x-large;">, and the goodwill it should engender is lost amid the feelings of compulsion, competition and conformit<span style="font-size: x-large;">y. </span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">I am just as guilty as the next person<span style="font-size: x-large;">!</span> </span> <span style="font-size: x-large;">There was a time when Christmas at my house had to be picture<span style="font-size: x-large;">-book perfect<span style="font-size: x-large;">. If any of my plans went awry, <span style="font-size: x-large;">I got very upset<span style="font-size: x-large;"><span style="font-size: x-large;">; considering my celebration short of the mark, and myself to have failed. Now (since my stroke<span style="font-size: x-large;">), a<span style="font-size: x-large;">lthough I still <span style="font-size: x-large;">spend far too much<span style="font-size: x-large;">,</span></span></span> I have simpler plea<span style="font-size: x-large;">s</span>ures<span style="font-size: x-large;">, and very different values<span style="font-size: x-large;">. For example<span style="font-size: x-large;">, <span style="font-size: x-large;">wishing some-one 'Good Health<span style="font-size: x-large;">' now <span style="font-size: x-large;">is </span>a muc<span style="font-size: x-large;">h more meaningful<span style="font-size: x-large;"> sentimen<span style="font-size: x-large;">t</span>, and although it was always important to me to <span style="font-size: x-large;">spend Christmas </span>surrounded by my family - now I feel tha<span style="font-size: x-large;">t importan<span style="font-size: x-large;">ce more <span style="font-size: x-large;">keenly<span style="font-size: x-large;">.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">So are we all in search of that 'warm, fuzzy feeling<span style="font-size: x-large;">'? May<span style="font-size: x-large;">be<span style="font-size: x-large;">. And where is the joy<span style="font-size: x-large;">?</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">At the risk of sticking <span style="font-size: x-large;">my head above the parapet a<span style="font-size: x-large;">gain<span style="font-size: x-large;">, I suggest <span style="font-size: x-large;">that the tem<span style="font-size: x-large;">ptation is to spend our way to com<span style="font-size: x-large;">fort and joy<span style="font-size: x-large;">! What is in fact a <span style="font-size: x-large;">religio<span style="font-size: x-large;">u</span>s </span></span></span></span></span></span></span></span></span></span></span></span>fest<span style="font-size: x-large;">i<span style="font-size: x-large;">val<span style="font-size: x-large;">, celebrating the <span style="font-size: x-large;">birth of a <span style="font-size: x-large;">baby who grew <span style="font-size: x-large;">up to be - for many of us an<span style="font-size: x-large;">yway - God, has become another example of <span style="font-size: x-large;">paying homage to the gods 'retail' and 'advertising'. I suspect that that's what my accuser was getting<span style="font-size: x-large;"><span style="font-size: x-large;">-</span>at! I now see more clearly<span style="font-size: x-large;">, but whether that is because of my age or because of the stroke - who knows<span style="font-size: x-large;">?</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">I s<span style="font-size: x-large;">hall s<span style="font-size: x-large;">till aim for that 'warm, fuzzy feeling<span style="font-size: x-large;">', but in my effort<span style="font-size: x-large;">s to celebrate the birth of Christ, I will <span style="font-size: x-large;">stri<span style="font-size: x-large;">ve not to <span style="font-size: x-large;">become a slave to those other gods.</span></span></span></span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com1tag:blogger.com,1999:blog-873194243287428145.post-55469518536271461572012-11-01T20:53:00.000+00:002012-11-01T20:53:24.532+00:0013. Miserable again <span style="font-size: x-large;"><span style="font-family: inherit;">My glass is still half-empty<span style="font-size: x-large;">. This is a dangerous (and rather uncomfortable<span style="font-size: x-large;">) state to be in<span style="font-size: x-large;">. For a while now I have been con<span style="font-size: x-large;">centrating on what I can't do - and that is a recipe for disaster<span style="font-size: x-large;">!</span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">These negative feelings really got going when I decided I wanted a move-round of the furniture<span style="font-size: x-large;">.<span style="font-size: x-large;"> Many years ago (and before my stroke<span style="font-size: x-large;">) I would spend a happy afternoon<span style="font-size: x-large;"> re-organising rooms. I would do this on a whim, and had no trouble pushing and pulling the heavy stuff around until I was happy with my handiwork<span style="font-size: x-large;">. How different it is now<span style="font-size: x-large;">! It must be several years since I last had a change-round, and there is no acting on a whim. There has to be a plan of action<span style="font-size: x-large;">, agreed well in advance<span style="font-size: x-large;">. And <span style="font-size: x-large;">as for putting my back into moving furniture ...that is a thing of the past! Now<span style="font-size: x-large;">, I am reduce<span style="font-size: x-large;">d to sitting on the sidelines<span style="font-size: x-large;">, directing the proceedings<span style="font-size: x-large;">.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">This train of thought led on to another<span style="font-size: x-large;">, more upsetting realisation. <span style="font-size: x-large;">Up until recently<span style="font-size: x-large;">, my thought<span style="font-size: x-large;">s (and many of my conversations<span style="font-size: x-large;">) began with 'before the stroke ...' It all seemed so recent<span style="font-size: x-large;">. All the values<span style="font-size: x-large;">, all the <span style="font-size: x-large;">skills<span style="font-size: x-large;">, all the likes and dislike<span style="font-size: x-large;">s, all the habits I had then were as if frozen in time<span style="font-size: x-large;">.</span> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span style="font-size: x-large;">Maybe I clung to them because t<span style="font-size: x-large;">hese, and other aspects of </span>my <span style="font-size: x-large;">character <span style="font-size: x-large;">were </span>the only things I had left<span style="font-size: x-large;">. The<span style="font-size: x-large;"> 'important' bits of my character still remain<span style="font-size: x-large;">, but I can no longer think of it as 'recent'. It is thirteen years since I had the stroke<span style="font-size: x-large;">; thirteen years I have been this way. I can no longer revel in the triumph of cheating death, of surviving against all odds, of defying all and sundry to prove the point that I wasn't a 'lost cause'. I am in the 'long haul' that is the rest of my life. And <span style="font-size: x-large;">this realisation <span style="font-size: x-large;">has made me miserable<span style="font-size: x-large;">.</span></span></span></span></span></span></span></span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;"><span style="font-size: x-large;"><span style="font-size: x-large;"><span style="font-size: x-large;">It would be so easy to slide into depression<span style="font-size: x-large;">. At one stage <span style="font-size: x-large;">it</span> was even an expected consequen<span style="font-size: x-large;">ce. But I am too stubborn for that ...and some might sa<span style="font-size: x-large;">y 'bloody-minded'. So for the time being I will continue <span style="font-size: x-large;">to kick the cat (metaphorically <span style="font-size: x-large;">of course<span style="font-size: x-large;">). Oh, and re-arrange<span style="font-size: x-large;"> the furniture<span style="font-size: x-large;">!</span></span></span></span></span></span></span></span></span></span></span></span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com2tag:blogger.com,1999:blog-873194243287428145.post-33753991802314741082012-10-04T20:29:00.000+01:002012-10-04T20:29:47.997+01:0012. This week I am feeling very sorry for myself <span style="font-size: x-large;"><span style="font-family: inherit;">I guess that there are many women 'of a certain age' who don't like what they see when they study themselves in the mirror. I am no exception, though this has been made more acute for me as for the first year following my stroke I refused to look at myself! My right eye turned inwards towards my nose, and my mouth was horrendously twisted. Now, although the eye has been surgically corrected, and my mouth is almost normally-shaped, it is still a stranger who stares back at me every time. I do not like, or even recognize the old, fat face I see in the mirror.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">For many years I used to be a 'glass-half-empty' person, always looking on the dark side so that I was prepared for the worst (or so I thought!). Then, after the stroke, I became a 'glass-half-full' person. I had to! It was the only way I could survive! I had to focus on what I could still do (not a lot), rather than what I had lost (a huge amount). Every little movement was cause for celebration ...every skill regained (however basic), cause for self-congratulation. I was positive ...always positive!</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">But now I hear the call of that half-empty glass! The little movements have stayed little! The vast improvement I secretly (well, maybe not so secretly) hoped-for hasn't materialised, and I'm tired of being positive!</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">I don't like the way I look, or the way I sound. I don't like the fact that I dribble, and burp, and cough without my hand in front of my mouth. I don't like having to be fed, having to be showered (& never a soak in the bath), and having my nose blown for me. I don't like having other people using my kitchen and not being able to drive my car, or dig my garden! I Don't Like an awful lot! I'm turning into a very Grumpy Old Woman!</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">But hang on a minute. Do I like living at home? (Er...yes); do I like spending time with my family? (yes); do I in fact like being alive? (well...yes).</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;"> It could all have been so very different. Perhaps my glass is half-full after all ...</span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com1tag:blogger.com,1999:blog-873194243287428145.post-72911539054939146352012-09-01T15:06:00.000+01:002012-09-01T15:06:32.206+01:0011. 'There, but for the grace of God, go I'<span style="font-size: x-large;">The plight of Tony Nicholson gave me some serious food for thought. It re-awakened some uncomfortable feelings, brought back some uncomfortable memories, and made me face some uncomfortable truths.</span><br />
<span style="font-size: x-large;">Perhaps the most fundamental loss, when one is 'Locked-In' is that of <i>autonomy</i>. However 'intellectually intact' you are - you remain at the mercy of others! You can make decisions, but are completely powerless to carry them out. Even making your wishes known is a Herculean task - and there is no guarantee whatsoever that they will be carried out. You are completely dependent on others (in the worst case, even needing a ventilator to help you breathe), and there are no bounds to the frustration of waiting for and watching some-one else doing something you would prefer to do yourself.</span><br />
<span style="font-size: x-large;">Another great loss is that of effective <i>communication</i>. How I longed (& still do) for a good natter, to shout or sing; even to call the cat! Although 'talking' via eye-blinks is better than nothing (and in many respects is indeed progress), it is slow and exhausting. And once again, you are at the mercy of others - to 'listen'.</span><br />
<span style="font-size: x-large;">I was 'lucky'. I was Locked-in for a few months. After that, I regained enough movement in my right thumb to operate a switch, and to drive an electric wheelchair. I regained enough movement in my head to operate a headswitch, and nod or shake my head, which injected some 'normality' into my communication. Even these miniscule 'improvements' opened up my life considerably; I shudder to think of what life could have been like, without them. Over the years, I have acquired some 'speech' (I'm very dysarthric), and have learned to write a bit (the first time I signed a cheque, was indeed a red-letter day!) But even so, I remain at the mercy of others. My whole life is totally built upon trust - and if that trust is betrayed, my whole world falls apart. I have to trust people - in so many ways too diverse to mention - and I have to trust 'things' (electronic, mechanical, and otherwise) to work properly! It is these 'things' that allow me to be 'independent'. But they all have to be set-up and maintained by other people - so I am not truly independent at all!</span><br />
<span style="font-size: x-large;">How much more dependent to be Locked-in! Dependent for staying alive and dependent (as was the issue here) on the manner of dying. There was a lot of discussion of the rights and wrongs of this man's case. And as I listened to the various pontifications I could not help thinking '...but you have no idea of how it <u>feels!</u>) Whatever one feels about the ethics of this, it is surely the loss of control over one's choices that is so cruel. I don't want to die. But I was Locked-in for a matter of months. How I would have felt had it been a matter of years, I don't know.</span><br />
<span style="font-size: x-large;">But one thing I do know is that being Locked-in is being in a Living Hell!</span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com2tag:blogger.com,1999:blog-873194243287428145.post-38532470169518711352012-08-11T14:57:00.001+01:002012-08-11T14:57:44.172+01:0010. Diatribe<span style="font-size: x-large;"><span style="font-family: inherit;">There's no escape - I'm going to have to come out with it - I am becoming ashamed of my profession! Whatever happened to Basic Nursing Care?</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">I know I am not alone in having this criticial opinion.There have been more than a few features on the radio recently concerning poor care - in our hospitals and care-homes both for elderly and disabled people, and at least one newspaper columnist makes it her business to observe and comment upon the care given in these institutions. In addition, I can speak from my own experience (as a Nurse, Patient and patient's Relative), and the experiences of some of those close to me (both in and out-of the medical and nursing professions). I recognize that, in terms of how long it is since I was an active member of the nursing profession, I am a dinasour! In my heyday we had 'Nightingale' wards (a long room, with a row of beds' - perhaps totalling around 24 - down each side), the daily routine included various task-rounds, and the Nursing Degree was still at the experimental stage - undertaken by very few. Many of the 'old ways' are frowned upon today. But were they really all bad?</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">'Nightingale' wards undoubtedly had their faults, but at least one could see the whole place at a glance ...and people didn't get 'forgotten'. Those in charge made it their business to know all the people and what went on in their wards - and the 'buck always stopped' with the Ward Sister or Charge Nurse. These days, some places don't even have these, favouring such entities as 'Team Leaders' (for example). I was appalled to hear recently of a Ward Sister who rebuffed an enquiring relative with 'Oh, I don't know anything about <u>her</u>, you'll have to ask ...'</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">The most basic aspects of care (food, drink and cleanliness - both of the person and his/her surroundings) are now giving cause for concern. The media have reported critically on all these subjects recently, and I have heard many anecdotes which do not make comfortable listening. One common example of such is that of a meal-tray being left out-of-reach of an immobile person, then removed with no questions asked, when it obviously hadn't been touched. Whenever it is necessary for me to go into hospital in the years since the stroke, I have either a family member or a Carer stay with me - just to make sure that these basic needs are met. Communication - both with the person concerned and his/her relatives - has also, it seems, become a casualty. Something that really bugged me when I was last in hospital was being asked 'Is that alright dear?', then the speaker walked away without waiting for an answer. Not one, but two, errors there! (And the reply was going to be in the negative anyway!)</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">Of course, there are (still) some truly wonderful nurses, and they probably feel - justifiably - insulted by all this criticism. I have encountered such lovely people both in the hospital and in 'the community', and they have not necessarily been those with the highest qualifications. And certainly not necessarily those with a University Degree!</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">It is my contention that the <i>personality </i>of an individual plays a much more important role in the quality of nursing care than is recognised. The inherent qualities of caring and empathy seem to be overlooked in favour of academic prowess. Common sense and kindness seems to have been supplanted by the need to meet targets and to save money. But people's basic need for time, attention and respect do not diminsh over time, despite the prevailing political or economic climate.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;"><br /></span></span>
<span style="font-size: x-large;"><span style="font-family: inherit;">There; I have stuck my head above the parapet, and I expect to get shot down. But I feel justified, knowing that I am not alone in thinking the way I do. It's probably time to get down off my soap-box ...once again ...</span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com0tag:blogger.com,1999:blog-873194243287428145.post-80608129535331272632012-07-23T21:09:00.000+01:002012-07-23T21:09:46.736+01:009. Doctor Who?<span style="font-size: x-large;">It occurred to me the other day, (as I was idly thinking - as I am wont to do), that there are quite a few similarities between me and a dalek (of 'Dr. Who' fame). If I remember rightly, daleks are composed of an amorphous mass of intelligence, enclosed in an inflexible, odd-shaped, body. Just like me! They also scoot along on wheels - as I do! And as for repeatedly voicing a desire to 'exterminate', well, I may not be very vocal about that but I do harbour thoughts along those lines!</span><br />
<span style="font-size: x-large;"> Even my voice sounds like a dalek (- notwithstanding that I have previously described it as a cross between Marge Simpson and Darth Vader.) It is that mechanistic monotone that does it.</span><br />
<span style="font-size: x-large;">Very early on, an Occpational Therapist who had great insight and empathy, said to me ''It must be like being imprisoned in your own body.'' What an astute observation! That is just how it felt, nay feels! It was particularly so when I was 'Locked-In'. Luckily (and surely luck plays a considerable part in this), I was Locked-In 'only' for three months. Three months in Solitary Confinement, able only to think. Then slowly, gradually, I began to break out. Now, although still imprisoned, my 'shackles are loosened' - thanks to electronics (previously described), and the return of a miniscule amount of movement sufficient to operate them. Without this loosening, I don't know how I would bear my imprisonment! To be Locked-In for years on end must indeed be a living hell.</span><br />
<span style="font-size: x-large;">I suppose I am fortunate to see some humour in my situation - and recognize similarities between me and a science-fantasy character! I suppose I should be thankful for small mercies...</span><br />
<span style="font-size: x-large;">Quite recently, the daleks learned how to climb stairs ...Watch This Space! </span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com2tag:blogger.com,1999:blog-873194243287428145.post-12520827489335530582012-06-20T14:29:00.000+01:002012-06-20T14:29:27.285+01:008.This week I shall be discussing mostly: understatement<span style="font-size: x-large;">The English language just doesn't have the vocabulary to cope with the extremes of emotion I experience. Consequently, some of the descriptions of the way I feel fall well short of the mark. My life is full of understatements. Here are some of the main 'culprits':</span><br />
<span style="font-size: x-large;"><u>Frustration </u>People say to me '<i>You must get so frustrated </i>' or '<i>It must be so frustrating</i>' H'm...yes ... and some ... Frustration is what you feel when you struggle to get a lid off that's stuck on a jar, or that feeling when the car won't start for the third morning in a row. But when you are desperately trying to make some-one understand what you are saying when it sounds perfectly clear to you ... or you're watching some-one make a hash of something you could do standing on your head ... and furthermore, that it's always going to be that way, that takes <i>frustration </i>onto a higher level. </span><br />
<span style="font-size: x-large;">Not for me the luxury, when having a row, of flouncing out of the room and slamming the door behind me! Any bad-temper or exasperation I feel just builds and builds - not unlike the pressure inside a pressure-cooker, as was once described to me. (And just like a pressure-cooker makes a dreadful noise as air escapes, I have been known- to my everlasting shame - to wail like a banshee when the <i>frustration </i>was too much to bear.)</span><br />
<br />
<span style="font-size: x-large;"><u>Embarrassment </u>I live with a level of embarrassment that I would never previously have thought possible. Before the stroke, I was very intolerant of being embarrassed, and would avoid situations where this was a risk. The stroke blew this to pieces. Everything about me now causes me embarrassment - the way I look, the way I sound, the way I eat, the way I drink; the noises I make, the fact that I dribble, and the scrapes I get into. The list is endless, but it became evident very early on that my life had to go on despite this. </span><br />
<span style="font-size: x-large;">I remember, one day two or three years after the stroke, making a conscious decision not to hide myself away any more - and began (in a small way at least) participating in the local community, and getting out-and-about. It took quite a while before I would eat in front of people, and even then, I confined myself to sharing a meal with close friends.</span><br />
<span style="font-size: x-large;">'<i> Do as I say and not as I do</i>' has never been so true! When I brought up my children, I led by example (I hope!), and I was pretty strict. Nowadays, I am far from a good example to my grandson...</span><br />
<span style="font-size: x-large;">The people who look after me make light of my shortcomings, and I laugh and joke a lot. All this merriment disguises a level of embarrassment that isn't comfortable to live with and is really beyond description.</span><br />
<span style="font-size: x-large;"><br /></span><br />
<span style="font-size: x-large;">... just a couple of the emotions I feel that are described totally inadequately, but with me constantly ...</span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com1tag:blogger.com,1999:blog-873194243287428145.post-54384359834389268702012-06-06T19:12:00.000+01:002012-06-06T19:12:17.077+01:007. It's for your own good!<span style="font-size: x-large;">People who know me can probably imagine my reaction to being told this quite recently! Particularly when the speaker was a young upstart of a nurse, who can't have even been born when I did my nurse-training.</span><br />
<br />
<span style="font-size: x-large;">There used to be, in the bookcase at home, a volume entitled 'Meetings Between Experts'. Although a textbook used in Medical Education, and way beyond me, I was captivated by the title. The 'Experts' referred-to are, on the one hand, the doctor ...and, on the other, the patient. And is this not a very important point? We are all experts on our-selves! Of course the Health Professionals are each experts in their own fields (and quite often just in the theory thereof), but we know how we feel, how we are affected by things, our own hopes and fears, and - to a greater or lesser extent - our own limitations and boundaries. Because of this, we can have confidence in our 'expertise'...but we should also take more responsibility for our own health, and be prepared to face any consequences of the choices we make.</span><br />
<span style="font-size: x-large;">I have been taking risks right from the start. That sounds very 'gung-ho', doesn't it? I can't pretend that it's the wisest behaviour; some of the risks have paid-off and some haven't. Some of the things I have done have been downright foolish! Yet I maintain that without taking the occasional risk, I would not have made the 'progress' (such as it is), that I have made.</span><br />
<span style="font-size: x-large;">My point is that we should all be 'allowed' to take risky decisions if we want to - <u>provided that we also take responsibility for those decisions.</u> And it shows some maturity (and confidence) on the part of the Health Professional who will, from time to time, be content to 'bite his (her) tongue and see what happens'... </span><br />
<span style="font-size: x-large;"><br /></span><br />
<span style="font-size: x-large;">It's time for me to climb down off my soap-box, I think ...</span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com0tag:blogger.com,1999:blog-873194243287428145.post-63502566861048810132012-05-10T20:03:00.001+01:002012-05-10T20:03:17.857+01:006. This week I shall be discussing mostly: yoga<span style="font-size: x-large;"><span style="font-family: inherit;">I don't think a day goes past without my being thankful for having practised yoga for the twelve years before my stroke ...</span></span><br />
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<span style="font-size: x-large;"><span style="font-family: inherit;">I was one of life's 'duffers' (now <u>there's </u>an old-fashioned word!). I was useless at sport, and disliked any form of physical exercise. Then one day - while I was still a young Mum, some-one suggested I go to a yoga class. I liked the way we were all encouraged to do 'just as much as you are comfortable with' and 'don't try to emulate your neighbour'. Before long, my muscles were strong, my joints supple, and my body felt steadier than it had ever felt previously. I had found something at which I could do well, and spent the next twelve years either as a student in a class, or as the leader of a group practising yoga (it is to my everlasting shame and regret that I never became a qualified yoga teacher.) </span></span><br />
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<span style="font-size: x-large;"><span style="font-family: inherit;">After the stroke, I was visited (as was everyone else) twice a day by the physiotherapist, to carry out passive stretching exercises. These were dreaded by most people, who regarded them as a form of torture. I, on the other hand, positively welcomed them - and enjoyed the sensation of having all my limb-muscles given a good stretch. I am convinced that this was because I was used to regular stretching, and passive or not, these exercises fulfilled my continuing need for them. </span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">Likewise, many stroke survivors (I among them) endure muscle spasms, and most of these are very painful. Although the spasms I have are a diabolical nuisance, even an embarrassment, I get no pain. I feel sure that it's because my muscles are used to being well-stretched. I have to confess that I have, on occasion, purposely 'set-off' a spasm...just to feel some strength in an arm or a leg.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">Yoga has taught me Relaxation. It's quite a skill - not just 'taking it easy'. A physiotherapist told me some time ago that it is more possible to get a little movement from a relaxed muscle - rather than trying to force it. She's right! Counter-intuitive though it undoubtedly is, and extremely difficult, I do manage to persuade the tiniest (but occasionally the most useful) of movements from my otherwise useless limbs...by consciously relaxing them before I try.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">The relaxation techniques I learned were also immensely helpful for dealing with all the horrible things I have had done to me over the years - many of which (although not all) have been hospital procedures. I can't do the breathing discipline properly - as I have no voluntary control over it, but I can manage to control my muscles a bit. From time to time I still call upon the techniques I learned all those years ago.</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">It makes my blood boil when I hear anti-yoga comments (such as 'it is spiritually dangerous'), or stories of classes being banned from being held in church halls 'because it is practising a foreign religion'. I have even heard it said that 'emptying your mind risks the devil getting in'. What tosh! It is true that yoga has its roots in Eastern philosophies, but there are many 'arms' to the practice of yoga - one of which is the exercise 'arm'. It is this form of exercise which has been embraced by many of us in the West. In any case, there are many parallels to be found between these Eastern philosophies, and the mainstream religions. As for the devil ...God is big enough to deal with him, surely? I would argue that this fear suggests an insecurity with the beliefs of those who voice it ...but my days of theological argument are long gone!</span></span><br />
<span style="font-size: x-large;"><span style="font-family: inherit;">My (passive) range of movement continues to astonish therapists and carers alike, and I feel sure that my lack of contractures is in no small part due to my earlier practice of yoga. I cannot speak highly enough of it and would recommend it to anyone.</span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com0tag:blogger.com,1999:blog-873194243287428145.post-21191211967980410022012-04-23T20:47:00.000+01:002012-04-23T20:47:01.086+01:005. No second chance !<span style="font-size: x-large;">I thought I had all the answers! I used to think that a 'good' death was infinitely preferable to life-at-all-cost. But that was before I stared death squarely in the face!</span><br />
<span style="font-size: x-large;">I distinctly remember thinking that I could just let-go, and 'join' my loved ones who had already died. But then I thought of my husband with a new wife...of my daughters growing-up without me around ...of what I might miss...and I began to fight like crazy! Boy, was it hard work! I was on a ventilator, but had to initiate each breath and the machine would then 'assist'. So, as one might plod along - putting one foot in front of the other - I forced one breath after the other. Considerations of quality-of-life did not come into it; my focus was on survival.</span><br />
<span style="font-size: x-large;">As part of rehabilitation, I had regular sessions with a psychologist. During the twelve months that I was in rehab., I had three psychologists, and only one of them tackled what I would term 'nitty-gritty' topics. We discussed suicide. (I use the term 'discussed' loosely, as my speech was still at the grunting stage so discussion was rather one-sided, interspersed with nods and shakes of the head from me.) Things were bad. I was quadraplegic. I had double-vision, and my right eye turned inwards. My 'best' means of communication was blinking (although I was trying to talk again). My world (and that of my family) had turned upside-down. There was a huge possibility of feeling suicidal.</span><br />
<span style="font-size: x-large;">It was a well-founded possibility. Very soon I felt that I could take no more! Quite frequently these days - thirteen years on - I feel like throwing up my arms (only, I can't!), and shouting (only I can't!) - 'Please, no more' . I often feel like throwing in the towel, particularly when I think of all the things I used to do but will never again. I so wish I could wipe the slate clean, and start again.</span><br />
<span style="font-size: x-large;">But therein lies the problem. Starting afresh isn't possible. There is no second chance. You only get one go at this life. THIS IS IT! And because - to me - the alternative is so final, and so dreadful, I have stuck with it.</span><br />
<span style="font-size: x-large;">I believe that it was Winston Churchill (forgive me if I'm wrong) who coined the phrase 'keep bu****ing on'. That has become my mantra...One foot in front of the other - ceaselessly plodding along ...</span> <br />
<br />Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com0tag:blogger.com,1999:blog-873194243287428145.post-71341962746472080682012-04-05T13:34:00.002+01:002012-04-05T13:34:51.566+01:00This week I shall be discussing mostly: Dysarthria<br />
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<span style="font-size: x-large;">It is the bane of my life! (Well, actually there are several, but this is possibly the worst!)</span><br />
<span style="font-size: x-large;">There are two main communication problems associated with stroke - <i>dysarthria</i> ('difficult or unclear articulation in otherwise linguistically accurate speech'- according to my dictionary) and <i>aphasia </i>('difficulty with, or inability to produce words'). I have the former. In spades!</span><br />
<span style="font-size: x-large;">We take speech for granted - most of us. Open our mouths, and out it comes. In fact, a whole load of physical things are involved in producing just one word, and if any one of these isn't quite right, then the words don't come out right either. There is a huge amount necessary for clear speech: facial muscles, tongue, hard and soft palates, and vocal cords. Also the lungs, chest muscles and the diaphragm. I don't think I have got any one of those working properly! Consequently, I have enormous trouble with speaking ...but I persist nevertheless. Before my stroke I did some public speaking, sang alto in choirs, and at the time of the stroke was Chairman of the local Choral Society. Now, singing is out of the question, and, on a good day my monotonous voice resembles a cross between Marge Simpson and Darth Vader. On a bad day I am almost completely silent! (How fortunate it is that I have retained my expressive face!)</span><br />
<span style="font-size: x-large;">It infuriates me how people who don't know me treat me as if I am stupid, just because my speech is slow and unclear (added to the fact that I am in a wheelchair). Come to think of it, quite a lot infuriates me about being dysarthric! It is a cardinal sin to pretend to understand what I am saying when people don't have a clue. The glazed expression and the knowledgable nod plus 'Uhuh' that gives it away! Even folk close to me consider it a kindness to finish my sentences for me. More often than not, they supply the wrong words so I end up finishing the sentence anyway - but in a bad mood to boot! Many people seem to dislike silences...and start talking just as I am taking a breath before speaking myself. Telephone conversation is almost out of the question - not only for this reason , but also my speech is so quiet and unclear.</span><br />
<span style="font-size: x-large;">There are those who doubtless think that I am my own worst enemy. Right from the start, (when I was Locked-In, and 'conversing' with eye-flashes to the alphabet), I took perverse pleasure in 'spelling out' really long words - and watching the expressions on the 'listeners'' faces as they built up these complicated words.</span><br />
<span style="font-size: x-large;">Much later, when I was learning to talk again, and trying to cope with my dysarthria, mySpeech-therapist suggested I concentrate on saying short, snappy words to attract people's attention, or to express my needs. For example: <i>Hey!</i>, <i>Drink!</i> or <i>I'm cold!</i> Hang that for a lark! I feel bad enough, having to have everything done for me, without barking orders as well. One of the earliest phrases I re-learned was '<i>Thank you</i>' In addition to the obvious expression of gratitude for the task, I felt that this helped me maintain a modicum of self-respect.</span><br />
<span style="font-size: x-large;"><br /></span><br />
<span style="font-size: x-large;">I could keep banging on about how I hate having dysarthria, and would probably bore you rigid! Instead, I will end by saying how distressed I was when some-one close to me said 'This is your voice now. I have got used to it'. It is <u>not my voice </u>and I will never get used to it! I merely make use of it because I have no other option ...</span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com2tag:blogger.com,1999:blog-873194243287428145.post-24319906425915963752012-03-24T12:14:00.000+00:002012-03-24T12:14:29.837+00:003.How many (people) does it take to ...?<span style="font-size: large;">Recently, when I was feeling rather 'down', I began considering just how much was involved in keeping me alive and 'functioning'. Following the latest reports on the radio, of the neglect of some elderly people, I also started wondering how long I would last without the input of others. That gave me the heebie-jeebies, so I soon stopped that particular game and returned to my original musings. </span><br />
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<span style="font-size: large;">I concluded that there are three main 'things' on which I am dependent: Electricity, Computers and People.</span><br />
<span style="font-size: large;"><br /></span><br />
<span style="font-size: large;">There are rows of chargers in my house! One for the wheelchair, one for the hoist and two for the environmental controls. Even such ordinary items as the toothbrush and the phone have their own chargers. In addition, although the environmental controls work by sending radio-signals, the devices they control require electricity to power them. So, in addition to the obvious things like the TV and table-lamps, there is also the door-opener and alarm - without which I am not, strictly speaking, safe to be left alone. So, without electricity I am really stuck ...unable to do anything except sit and watch the world go by.</span><br />
<span style="font-size: large;">We have had computers (of increasing sophistication) in the house for most of my married life. I used to hate the computer. With a passion! Now it is my lifeline, and I would hate to be without it. With it I can keep in touch with folk (either by email or skype), I can catch up with radio TV and film, and I can make the lists - for which I am famed within my circle - which keep some semblance of order in my life. I also organise my finances and pay my employees' wages - with Internet Banking, and shop for groceries, gifts and other goodies on-line. I was even able to study with the Open University last year, courtesy of the electronic delivery of the Course Material ...and of course, there's now this! In short, the computer enables me to carry on doing many 'normal' things.</span><br />
<span style="font-size: large;">Last of all, and the biggest group, is People. I have a team of six 'personal assistants ' (carers), a housekeeper, and a gardener. My GP, other Doctors, District Nurses, my Counsellor, other Health-Professionals...they are all involved in caring for me - to varying degrees. Then, of course, my close family, my extended family, and my friends are all an incredibly important part of my wellbeing. A veritable army involved in my welfare!</span><br />
<span style="font-size: large;">It reminds me of the old joke - 'how many (whatever) does it take to change a light-bulb?' In this case - one heck of a lot!</span><br />
<span style="font-size: large;">I'm awfully glad somebody, somewhere, thinks I'm worth it! </span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com1tag:blogger.com,1999:blog-873194243287428145.post-76255893600013431582012-03-06T15:12:00.000+00:002012-03-06T15:12:21.064+00:002. This week I shall be discussing mostly ...<span style="background-color: blue; font-size: large;"><span style="color: white;">During the 90s, there used to be a TV sketch-show in which one of the sketches involved a 'rustic' character emerging from a garden shed. Each time he did, he announced in a broad dialect (something like)-'This week I shall be wearing mostly ...' - followed by some sort of sartorial extravagance. I am reminded of that every time I think of what to talk about ...'This week I will be discussing mostly ...'</span></span><br />
<span style="font-size: large;"><br /></span><br />
<span style="background-color: blue; font-size: large;"><span style="color: white;">When I had the stroke (over ten years ago now), and was 'Locked-In', there was a dearth of things to read to give me or my family a crumb of comfort or encouragement. A trawl of the professional magazines yielded a few, dry articles on the subject , which were far from encouraging; for two main reasons. Firstly there were very few reports of people surviving a brain-stem stroke that severe anyway, and secondly I did not show any of the early signs of improvement deemed necessary as indication of any sort of recovery. Back then, Facebook and Twitter were merely a gleam in their developers' eyes, and blogs just did not exist! So we as a family felt very alone. Our amassed medical knowledge had not prepared us for this.</span></span><br />
<span style="background-color: blue; font-size: large;"><span style="color: white;">For some reason, several people gave me copies of 'The Diving Bell and the Butterfly' (the acclaimed narrative by a French journalist enduring the agonies of being 'Locked-In'; subsequently made into a film). I can only assume that they thought it might be an inspiration to me - in my 'Locked-In' state. It was not! To this day, I have been unable to get beyond the first few pages . It was and is all too familiar - and depressingI found Christopher Reeve's (of Superman fame) autobiography much more encouraging. I was given two copies of that, as well.</span></span><br />
<span style="background-color: blue; font-size: large;"><span style="color: white;">I felt very alone in my situation, and we as a family felt very alone - as if nothing like this had ever happened to anyone else, and no-one else could possibly feel so wretched. Over the years I have seen clearly that this is not, and was not, the case. There are many who endure similar nightmares to ours (and worse!), and who make the best of the hand they are dealt. That does not, however, lessen the feelings of isolation which, iI suspect, we all have . I would like to think that by reading this, at least one person might feel less 'alone', and might be strengthened to keep fighting! Perhaps, amongst my prattling, there might be something which strikes a chord, and provides some extra encouragement. Perhaps ...</span></span><br />
<span style="background-color: blue; font-size: large;"><span style="color: white;"><br /></span></span><br />
<span style="background-color: blue; font-size: large;"><span style="color: white;">Well, it was not my original intention to talk about lonliness. Funny how things turn out, isn't it?</span></span><br />
<span style="background-color: blue; font-size: large;"><span style="color: white;">Now, I feel very alone again ...but that is a different story ...</span></span><br />
<span style="background-color: blue;"><span style="color: white;"><br /></span></span>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com0tag:blogger.com,1999:blog-873194243287428145.post-11934014972616050462012-02-20T13:26:00.000+00:002012-02-20T13:26:13.609+00:00SCRIBBLINGS OF A STROKE-SURVIVOR<!--[if gte mso 9]><xml>
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<span style="font-size: 16.0pt; line-height: 115%;">Some days I
don’t feel like I’m a Survivor at all; I feel so sorry for myself, that nobody
else could possibly feel as bad as I do, and that no-one knows – or cares – how
much effort it takes to appear as ‘normal’ as I can.</span></div>
<div class="MsoNormal">
<br /></div>
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<span style="font-size: 16.0pt; line-height: 115%;">This is
clearly absurd! Ever since my stroke – in 1999 – I have been surrounded by love
and support. Throughout the first year and a half my husband (now estranged)
and my daughters provided me with company for most of the day, every day (- I
am still in awe of their devotion!). Other members of our family and close
friends gave (and continue to give) untold support to me and to them. Now that
I am home – and have been for over ten years – I have got a superb team of
personal assistants (carers), who give me practical help and emotional support every
day. So I have rarely had to face things on my own. But, the fact remains …
some days I feel more of a sufferer than a survivor.</span></div>
<div class="MsoNormal">
<br /></div>
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<span style="font-size: 16.0pt; line-height: 115%;">I have
always liked to ‘talk in pictures’. Metaphors have always played a big part in
my use of language; they seem to illustrate my meaning where mere words are
totally inadequate. Many years ago, my favourite - when describing the feelings
people might have when suddenly finding out something dreadful – was ‘like being
hit on the back of the head with a spade‘. Well…having a brain-stem stroke at
43, and being quadriplegic and dysarthric as a consequence was pretty much like
being hit on the back of the head with a spade – and after all these years I am
still seeing stars…</span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-size: 16.0pt; line-height: 115%;">To say it
changed my life, and that of my family and friends, would be an understatement
and a half. From being a fiercely independent person, I have become someone who
is almost totally dependent. My relationships have changed from being ‘give and
take’ to ‘mainly take’…and some (but mercifully very few) have broken under the
strain. I hate the notion of being a ‘vulnerable adult’, but officially that’s
precisely what I am! Life for anyone close to me, is turning out very
differently from how we originally envisaged it. Just as a stone tossed into
the water sets off a series of ripples in ever-increasing circles, so<span style="mso-spacerun: yes;"> </span>the this stroke has had huge effects on the people
and things in my life, seemingly knowing no bounds. <span style="mso-spacerun: yes;"> </span></span></div>
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<span style="font-size: 16.0pt; line-height: 115%;"><span style="mso-spacerun: yes;"> </span>And those ripples just keep on coming …..</span></div>Stroke Scribblerhttp://www.blogger.com/profile/09377109976062441021noreply@blogger.com3