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':
Frustration People say to me 'You must get so frustrated ' or 'It must be so frustrating' 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 frustration onto a higher level.
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 frustration was too much to bear.)
Embarrassment 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.
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.
' Do as I say and not as I do' 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...
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.
... just a couple of the emotions I feel that are described totally inadequately, but with me constantly ...
Wednesday, 20 June 2012
Wednesday, 6 June 2012
7. It's for your own good!
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.
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.
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.
My point is that we should all be 'allowed' to take risky decisions if we want to - provided that we also take responsibility for those decisions. 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'...
It's time for me to climb down off my soap-box, I think ...
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.
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.
My point is that we should all be 'allowed' to take risky decisions if we want to - provided that we also take responsibility for those decisions. 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'...
It's time for me to climb down off my soap-box, I think ...
Thursday, 10 May 2012
6. This week I shall be discussing mostly: yoga
I don't think a day goes past without my being thankful for having practised yoga for the twelve years before my stroke ...
I was one of life's 'duffers' (now there's 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.)
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.
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.
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.
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.
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!
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.
I was one of life's 'duffers' (now there's 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.)
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.
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.
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.
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.
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!
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.
Monday, 23 April 2012
5. No second chance !
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!
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.
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.
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.
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.
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 ...
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.
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.
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.
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.
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 ...
Thursday, 5 April 2012
This week I shall be discussing mostly: Dysarthria
It is the bane of my life! (Well, actually there are several, but this is possibly the worst!)
There are two main communication problems associated with stroke - dysarthria ('difficult or unclear articulation in otherwise linguistically accurate speech'- according to my dictionary) and aphasia ('difficulty with, or inability to produce words'). I have the former. In spades!
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!)
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.
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.
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: Hey!, Drink! or I'm cold! 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 'Thank you' In addition to the obvious expression of gratitude for the task, I felt that this helped me maintain a modicum of self-respect.
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 not my voice and I will never get used to it! I merely make use of it because I have no other option ...
Saturday, 24 March 2012
3.How many (people) does it take to ...?
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.
I concluded that there are three main 'things' on which I am dependent: Electricity, Computers and People.
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.
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.
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!
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!
I'm awfully glad somebody, somewhere, thinks I'm worth it!
I concluded that there are three main 'things' on which I am dependent: Electricity, Computers and People.
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.
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.
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!
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!
I'm awfully glad somebody, somewhere, thinks I'm worth it!
Tuesday, 6 March 2012
2. This week I shall be discussing mostly ...
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 ...'
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.
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.
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 ...
Well, it was not my original intention to talk about lonliness. Funny how things turn out, isn't it?
Now, I feel very alone again ...but that is a different story ...
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.
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.
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 ...
Well, it was not my original intention to talk about lonliness. Funny how things turn out, isn't it?
Now, I feel very alone again ...but that is a different story ...
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