Another blast from the past... written 12/24/2002 4:58 PM, before I became housebound.
Christmas Eve. Late afternoon. Sheffield.
Today I decided to go and do some shopping. It was either that or go without Christmas Dinner altogether. I did have a cold sausage left over, but, well, you know. It's bad enough being alone at Christmas without sitting down to a left over sausage decorated with a sprig of holly.
If I had any holly of course.
Fortunately the shops are open Christmas eve, so no problem there. Unfortunately my legs were on a go slow while debating the advisability of going on an all out strike.
Fortunately I have a wheeled shopping trolley so I walked (walked? Make that staggered) it round to where I garage my car. Unfortunately, the car had decided that this was a good day to die. So it did.
Fortunately, the shop I wanted is a downhill walk, though of some distance. Unfortunately this means that it's an uphill walk back with a full shopping trolley.
Fortunately it was a nice dry day for a walk, and I managed to get everything I'd written on my list. Unfortunately I'd forgotten to write "Stuffing" on my list.
Fortunately the fish and chip shop was on the way home, and open, so I treated myself to battered cod and chips to eat out of the wrappings on the way home. Not easy while using both hands to push a loaded trolley uphill, but worth it I thought.
Unfortunately it started to rain at that point, so I stuffed the yummy hot food into the trolley to eat it later. With luck it would still be warm by the time I got it home.
Fortunately it wasn't too cold, and I enjoyed it. Unfortunately so did my cat.
Fortunately I had some time to spare so I thought it would be nice then to go online and see what delights Christmas would bring to a lonely old woman. Unfortuately what I received was a rude email from someone I'd thought was a friend. Huh.
Things were getting better by the minute. I poured myself a drink to calm down or cheer up, or something like that. Fortunately I had bought some in advance of Christmas. Good job too.
Unfortunately alcohol makes me ill, so I just know that I'm going to pay for this.
What more can happen? No, don't tell me. I really don't want to know.
Merry Christmas everybody.
Wednesday 25 December 2013
Saturday 21 December 2013
She
It was Henry Rider Haggard who wrote about She who must be obeyed. I think I may have read the book once but don't really remember the details. Maybe I saw a film of it.
However, I was reminded of it last night, whilst thinking about some people in my life; people I would describe as a force of nature. The kind of people who go through life with all the drive of a hurricane or a flood, carrying all before them. If I mention Hyacinth Bucket, or Keeping Up Appearances, you should get the idea. She, or he, who must be obeyed.
There is no implied threat of punishment, nothing to give just cause to their demands. It is just expected that you will agree with whatever they want. Saying no simply isn't an option. Unless of course you are as strong willed as they are and can walk away unscathed and guilt free.
Are such people are deliberately or intentionally bullying? I don't believe so, nonetheless that's what it is. They seem to think that if they want to do something it should be done. They make plans which brook no opposition. It doesn't even occur to such people that others may have plans of their own which they are interfering with, or destroying.
It can be very wearing living with such people. You have to either simply acquiesce, go along with whatever is expected, or become very frustrated.
Is it good for such people to have everyone bow down to their wishes? Hard to say. I have tried standing up to them but often I have felt like the proverbial "idiot child", knowing nothing, having no say in what happens to me. I have learned in time to not mind that. Being humbled is good for the soul, or so they tell me. Life is certainly easier if you bend before the wind, go with the flow.
However, I was reminded of it last night, whilst thinking about some people in my life; people I would describe as a force of nature. The kind of people who go through life with all the drive of a hurricane or a flood, carrying all before them. If I mention Hyacinth Bucket, or Keeping Up Appearances, you should get the idea. She, or he, who must be obeyed.
There is no implied threat of punishment, nothing to give just cause to their demands. It is just expected that you will agree with whatever they want. Saying no simply isn't an option. Unless of course you are as strong willed as they are and can walk away unscathed and guilt free.
Are such people are deliberately or intentionally bullying? I don't believe so, nonetheless that's what it is. They seem to think that if they want to do something it should be done. They make plans which brook no opposition. It doesn't even occur to such people that others may have plans of their own which they are interfering with, or destroying.
It can be very wearing living with such people. You have to either simply acquiesce, go along with whatever is expected, or become very frustrated.
Is it good for such people to have everyone bow down to their wishes? Hard to say. I have tried standing up to them but often I have felt like the proverbial "idiot child", knowing nothing, having no say in what happens to me. I have learned in time to not mind that. Being humbled is good for the soul, or so they tell me. Life is certainly easier if you bend before the wind, go with the flow.
Monday 16 December 2013
What is It Like to Have M.E. ?
What is it like having M.E. they ask. I used to say, it's like a car without fuel. It won't go. But that's a bad analogy. It's more like a car with a faulty alternator. Not everyone will understand what that means, so let me spell it out.
Cars today are run by electrical circuits, as well as fuel. There is a thing called an alternator which charges up the battery as the car is running, otherwise the battery would be constantly drained. When the battery is flat the car won't run. Not only that, the electrically driven windows don't work, the sun roof likewise, the heater or air conditioning, and just about everything else, stops dead. So if the alternator is faulty, the car is in constant danger of being nothing more than an expensive ornament. Filling the car with fuel simply won't help.
Animals are much more complicated than cars, of course. We have cells called mitochondria which make energy, needed to run every system in the body, from the muscles to the brain. This energy is stored in the fat cells, our batteries. Without energy the brain doesn't function, the muscles don't function, the stomach can't digest, etc etc. There is a back up system consisting of adrenalin. You may have heard this referred to as the "fight or flight" hormone. It is produced by the adrenal glands and can be called up in emergencies to give an energy boost. Unfortunately, once used up it takes a long time to replace, so is only for emergencies.
Marathons runner tend to run on adrenalin, and afterwards need some time to recover. The subsequent "crash" is sometimes called payback. For people with M.E. that crash can follow a very small expenditure of energy: talking, thinking, going to the bathroom, eating a meal. Try to imagine how it affects your life, when everything you do leaves you exhausted for days.
If the mitochondria are faulty, we too, just like that car, become pretty useless. Unfortunately being fat doesn't help either because in M.E. the body can't call upon the energy stored in the fat. It doesn't matter how much fuel in the form of food is ingested, it isn't being utilised properly.
Not only that, if the brain isn't working correctly, every system in the body is affected, as the brain controls everything else. The kind of symptoms this leads to are many and varied, some less serious, some very serious indeed. Some people with the illness cope fairly well on a day to day basis, but are seriously short of energy, which is quickly used up and takes a long time to replace. This also leads to fuzzy headedness as the brain is short of oxygen, known as brain-fog, which describes it pretty well. An inability to concentrate, to take in information, or remember things. Rather like early Alzheimer's.
At it's most serious, sufferers are completely bed-bound, have to be tube fed, and in constant pain, unable to bear light or sound, as the nervous system is so severely compromised. Roughly 25% of people with the disease are severely enough affected to be either bed-bound or at least house-bound. It goes largely unrecognised, because they are rarely seen. Not for nothing is it known as the Cinderella disease, with M.E. acting as the wicked stepmother.
So you see, there isn't a simple answer. People with M.E. are more or less disabled by it, but all have this one feature...the lack of normal energy which everything needs for a normal life. The reasons are not totally understood yet, due to a lack of research, but it does appear that the brain and spinal cord are affected. In post-mortem examinations this has been shown to be the case. It seems that the mitochondria are not functioning as they should, though could be harder to prove. Dr Sarah Myhill and John Maclaren Howard have an ATP test to measure the mitochondria function, though this may not be something everyone has access to.
However, even that isn't the whole story. Tests on muscle tissue show that sufferers don't have normal muscle response to exercise. Instead of making them stronger, they become weaker. This is the reason why exercise is very bad for people with M.E. - it aggravates the problem.
There is so much more I could say about symptoms but it would take far too long and there are good websites which describe it much better than I can. The Hummingbird site is a good place to find out more.
Doctors, under the direction of various governments, choose to regard the whole thing as psychological. Much easier to blame the patient than try to find a cure or pay for disability pensions. Maybe that sounds cynical but the fact remains that time and again nothing is done to help these people. They are largely left to suffer, and what is worse, are castigated and made to feel like criminals, being told to snap out of it, exercise more, think themselves better. If the illness isn't "real" or doesn't have a physical cause, they can draw a line under it and forget it. But the approach used, graded exercise and cognitive behavioural therapy, do not and will not cure the problem of genuine M.E.
It will help people with other forms of chronic fatigue, of which there are many. No argument. But it's easy enough to tell the difference. If graded exercise helps, it isn't M.E. If it makes you worse, it probably is. Lyme disease, which often mimics M.E. having many of the same symptoms, can be treated with antibiotics which often in time effects a cure, though not always. So far nothing appears to help those with actual M.E. and won't, until more research is done to discover the basic problem and the cause of it.
There was a time when M.S. was regarded as psychological. Eventually doctors realised it was real and physical and though it can't be cured, at least sufferers were no longer regarded as malingerers or insane. Hopefully the day will come when M.E. sufferers are treated with the same respect.
Cars today are run by electrical circuits, as well as fuel. There is a thing called an alternator which charges up the battery as the car is running, otherwise the battery would be constantly drained. When the battery is flat the car won't run. Not only that, the electrically driven windows don't work, the sun roof likewise, the heater or air conditioning, and just about everything else, stops dead. So if the alternator is faulty, the car is in constant danger of being nothing more than an expensive ornament. Filling the car with fuel simply won't help.
Animals are much more complicated than cars, of course. We have cells called mitochondria which make energy, needed to run every system in the body, from the muscles to the brain. This energy is stored in the fat cells, our batteries. Without energy the brain doesn't function, the muscles don't function, the stomach can't digest, etc etc. There is a back up system consisting of adrenalin. You may have heard this referred to as the "fight or flight" hormone. It is produced by the adrenal glands and can be called up in emergencies to give an energy boost. Unfortunately, once used up it takes a long time to replace, so is only for emergencies.
Marathons runner tend to run on adrenalin, and afterwards need some time to recover. The subsequent "crash" is sometimes called payback. For people with M.E. that crash can follow a very small expenditure of energy: talking, thinking, going to the bathroom, eating a meal. Try to imagine how it affects your life, when everything you do leaves you exhausted for days.
If the mitochondria are faulty, we too, just like that car, become pretty useless. Unfortunately being fat doesn't help either because in M.E. the body can't call upon the energy stored in the fat. It doesn't matter how much fuel in the form of food is ingested, it isn't being utilised properly.
Not only that, if the brain isn't working correctly, every system in the body is affected, as the brain controls everything else. The kind of symptoms this leads to are many and varied, some less serious, some very serious indeed. Some people with the illness cope fairly well on a day to day basis, but are seriously short of energy, which is quickly used up and takes a long time to replace. This also leads to fuzzy headedness as the brain is short of oxygen, known as brain-fog, which describes it pretty well. An inability to concentrate, to take in information, or remember things. Rather like early Alzheimer's.
At it's most serious, sufferers are completely bed-bound, have to be tube fed, and in constant pain, unable to bear light or sound, as the nervous system is so severely compromised. Roughly 25% of people with the disease are severely enough affected to be either bed-bound or at least house-bound. It goes largely unrecognised, because they are rarely seen. Not for nothing is it known as the Cinderella disease, with M.E. acting as the wicked stepmother.
So you see, there isn't a simple answer. People with M.E. are more or less disabled by it, but all have this one feature...the lack of normal energy which everything needs for a normal life. The reasons are not totally understood yet, due to a lack of research, but it does appear that the brain and spinal cord are affected. In post-mortem examinations this has been shown to be the case. It seems that the mitochondria are not functioning as they should, though could be harder to prove. Dr Sarah Myhill and John Maclaren Howard have an ATP test to measure the mitochondria function, though this may not be something everyone has access to.
However, even that isn't the whole story. Tests on muscle tissue show that sufferers don't have normal muscle response to exercise. Instead of making them stronger, they become weaker. This is the reason why exercise is very bad for people with M.E. - it aggravates the problem.
There is so much more I could say about symptoms but it would take far too long and there are good websites which describe it much better than I can. The Hummingbird site is a good place to find out more.
Doctors, under the direction of various governments, choose to regard the whole thing as psychological. Much easier to blame the patient than try to find a cure or pay for disability pensions. Maybe that sounds cynical but the fact remains that time and again nothing is done to help these people. They are largely left to suffer, and what is worse, are castigated and made to feel like criminals, being told to snap out of it, exercise more, think themselves better. If the illness isn't "real" or doesn't have a physical cause, they can draw a line under it and forget it. But the approach used, graded exercise and cognitive behavioural therapy, do not and will not cure the problem of genuine M.E.
It will help people with other forms of chronic fatigue, of which there are many. No argument. But it's easy enough to tell the difference. If graded exercise helps, it isn't M.E. If it makes you worse, it probably is. Lyme disease, which often mimics M.E. having many of the same symptoms, can be treated with antibiotics which often in time effects a cure, though not always. So far nothing appears to help those with actual M.E. and won't, until more research is done to discover the basic problem and the cause of it.
There was a time when M.S. was regarded as psychological. Eventually doctors realised it was real and physical and though it can't be cured, at least sufferers were no longer regarded as malingerers or insane. Hopefully the day will come when M.E. sufferers are treated with the same respect.
Wednesday 11 December 2013
A Short Account of My Experience of M.E.
Then came this illness. Suddenly I could do very little. I tried, time and again, but it was no use. Within a year my already failing marriage ended. I got the chance to move out and did, knowing that my illness would not be tolerated at home it was all I could do. I took some part time work as part of an income support scheme, and spent every weekend in bed to recover from 21 hours a week of clerical work.
Then I had an emergency hysterectomy, with no counselling whatsoever, which nearly finished me off both physically and emotionally. After a time, to avoid being forced into work I wouldn’t be able to do, and having no legitimate excuse for not working, as ME was even less recognised back then than it is now, I went back to school. I did some night school, then college, and won a place at University. It was very hard, even getting there and back was such a struggle. In my first year I dislocated my knee and broke my ankle, which meant more surgery, so took the rest of that year off and started again the following year.
I won’t go into all the nightmare events that happened in my life during the next three years, but I was just about coping by doing nothing more than the set work, and finding it more and more exhausting even though I had moved to live very close, about 500m away, to make it easier. I got my degree but lost my then partner. I was then 51.
Since then I have done virtually nothing, or nothing that most people would recognise as living. I did start a post graduate course but was too ill by then to keep it up. I had further surgery two years ago for a low grade malignant Phyllodes Tumour. Now I am approaching 70 and becoming ever more feeble, exhausted, and in pain. My memory deserts me at times and the coming Christmas celebration is just too much to contemplate. If I don’t pick up a bit I will have to cancel it, again.
I sometimes wonder where it will all end. I have a cat, who is a blessing but costs in terms of energy, eleven grandchildren whom I rarely see, and now 2, going on 4, great grandchildren whom I don’t imagine I will ever see. My children all live too far away and have lives which prevent them visiting. Sometimes the loneliness is hard emotionally, and certainly getting through the days is, physically.
If I was suddenly healed of this tomorrow, at my age there is no way I will ever again be the person I was at 40. I have lost nearly 30 years of any meaningful life, merely existing as I do, virtually housebound, only going out for vital appointments. I try to stay cheerful but it’s not always easy. I get depressed at times, and over emotional at others. I’m sure the short days of winter aren’t helping and the approach of Christmas is always hard, with its focus on family and jollity, neither of which are part of my life, and haven’t been for years.
So this is it. A potted account of my illness. Or at least, the one that has taken away so much.
Friday 6 December 2013
Songs For Second Life
The music for this song is a traditional morris tune going back to the 18th century. It was collected by folk song collector Cecil Sharp, who in turn got it from morris dancer William Kimber. Australian composer Percy Grainger had a hit with a piano arrangement of the tune in 1919. Robert M.Jordan added the lyrics "An English Country Garden" in 1958. I have added my own words to the tune. I don't expect it to make the charts.
In My Second Life Inventory.
How many items do I really use in my Second Life Inventory?
Most of the stuff has never paid its dues in my Second Life Inventory
Dances and a dancing floor, animations by the score
textures and sounds that called to me;
Years of hunt things I get I've never opened yet
In my Second Life Inventory.
How many objects do I really know in my Second Life Inventory?
I am convinced they multiply and grow in my Second Life Inventory.
Shoes and boots of many hues, outfits that I never use
sit in their folders patiently;
There are freebies galore from lucky chairs and more
In my Second Life Inventory.
How many snapshots never get shown in my Second Life Inventory?
Some in a viewer, others on their own, in my Second Life Inventory.
Photos of my avatar, looking like a movie star,
some with my boyfriend no one will see
There are even a few of of folk I never knew
In my Second Life Inventory.
Then there's the place I haven't yet explored in my Second Life Inventory
Lindens provided yet another hoard in my Second Life Inventory.
Avatars I'll never need, probably they also breed,
raising the total needlessly,
If I don't get it clear I'll simply disappear
in my Second Life Inven-tor-y…
© 2013
This Second Life
It's a curious world we inhabit for nothing is quite as it seems
as we walk amongst others' illusions and play out each other's dreams.
But how strong are the feelings engendered when our fantasy forms intertwine,
and the words so easily uttered seem utterly real and divine.
To become so attached to some pixels would appear to be madness indeed
but many the hearts that are broken as we fail to find all that we need.
Some will retire defeated whilst others return to the fray
to seek once again confirmation or maybe make somebody pay!
Are our lives so incredibly empty that we have to make second lives here?
Or are we just pushing the boundaries, examining that which we fear?
No doubt it's a heady sensation to be given the freedom we lack
with little or no intervention as we practise our moves in the sack!
Of course there's much more to this venture than relationships, long-lived or short;
it's a whole universe of sensations, creations and much food for thought.
For avatars, pixels, we may be but behind every one is a mind,
a person with feelings, emotions, a soul to be seen and divined.
As you play out your various daydreams in this fabulous fantasy place,
there are those who will try to annoy you with a virtual slap in the face.
If it happens to you just ignore it, for they really aren't worth your distress.
Have fun and enjoy every minute, with each ounce of strength you possess.
© 2013
In My Second Life Inventory.
How many items do I really use in my Second Life Inventory?
Most of the stuff has never paid its dues in my Second Life Inventory
Dances and a dancing floor, animations by the score
textures and sounds that called to me;
Years of hunt things I get I've never opened yet
In my Second Life Inventory.
How many objects do I really know in my Second Life Inventory?
I am convinced they multiply and grow in my Second Life Inventory.
Shoes and boots of many hues, outfits that I never use
sit in their folders patiently;
There are freebies galore from lucky chairs and more
In my Second Life Inventory.
How many snapshots never get shown in my Second Life Inventory?
Some in a viewer, others on their own, in my Second Life Inventory.
Photos of my avatar, looking like a movie star,
some with my boyfriend no one will see
There are even a few of of folk I never knew
In my Second Life Inventory.
Then there's the place I haven't yet explored in my Second Life Inventory
Lindens provided yet another hoard in my Second Life Inventory.
Avatars I'll never need, probably they also breed,
raising the total needlessly,
If I don't get it clear I'll simply disappear
in my Second Life Inven-tor-y…
© 2013
This Second Life
It's a curious world we inhabit for nothing is quite as it seems
as we walk amongst others' illusions and play out each other's dreams.
But how strong are the feelings engendered when our fantasy forms intertwine,
and the words so easily uttered seem utterly real and divine.
To become so attached to some pixels would appear to be madness indeed
but many the hearts that are broken as we fail to find all that we need.
Some will retire defeated whilst others return to the fray
to seek once again confirmation or maybe make somebody pay!
Are our lives so incredibly empty that we have to make second lives here?
Or are we just pushing the boundaries, examining that which we fear?
No doubt it's a heady sensation to be given the freedom we lack
with little or no intervention as we practise our moves in the sack!
Of course there's much more to this venture than relationships, long-lived or short;
it's a whole universe of sensations, creations and much food for thought.
For avatars, pixels, we may be but behind every one is a mind,
a person with feelings, emotions, a soul to be seen and divined.
As you play out your various daydreams in this fabulous fantasy place,
there are those who will try to annoy you with a virtual slap in the face.
If it happens to you just ignore it, for they really aren't worth your distress.
Have fun and enjoy every minute, with each ounce of strength you possess.
© 2013
Wednesday 4 December 2013
This Country Is Not Child Friendly.
In the past we saw children as cheap labour, sent them up chimneys, down mines, into factories, etc. And in the better off homes they were raised by nannies, seen and not heard, and possibly not even seen. That spread out into general society until children were regarded as more of a nuisance than a blessing. Sent to bed early, dumped in front of television sets or games consoles to avoid having to deal with them in a proper affectionate manner.
Traveling abroad one sees a huge difference in some countries where children are welcomed: in restaurants, cafes, pretty much everywhere. Family is important in these countries. Yes, some can go overboard with brothers being over protective of sisters, fathers too protective of daughters, but is that worse than our attitude where in many families no one seems to care at all.
Women having to work away from home started during the two world wars but is now pretty much expected and demanded by successive governments, and a necessity for many families who have to have both parents working just to survive. And then there is the issue of single parent families, trying to cope. This has added to the neglect of children in some families; it has been passed down through successive generations and is just getting worse.
And now? We have a very high teenage pregnancy rate, we have teenage binge drinking, we have school absenteeism, teenage crime and prison population. And these will be the parents of the next generation of children. How will they be raised?
Are these things unconnected? I don’t think so. This country needs to take a good hard look at how we raise our children if we want things to improve.
Of course, this is a generalisation, not all families are so dysfunctional but many are and we need to look at and tackle the root causes. Punishment is not the answer to it all, more laws concerning youth crime are not the answer, but more love, more respect, more caring are. From an early age.
Educating today's young on the right ways to raise their children is a start, but facilities have to be put in place to then allow parents to be parents, rather than just breadwinners, with time to spend with their children. Public places need to be encouraged to allow parents to take their children with them instead of having to leave them at home.
Attitudes regarding how we see children in general need to change.
The new laws regarding parental leave for both parents is a step in the right direction but won't deal with the problem as it now stands. Maybe we should be writing to those in power, who possibly don't see the problem as most of us do, to ask them to act, before another generation of largely neglected children is born.
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