Today, someone asked me to tell them how old I think I am. It was in an argument about whether we should use age as a classifier for a shared or common interest. Her view is that actual age in years from birth is only used to reinforce prejudice and that what she refers to as true age can only be determined by a number of factors, including health conditions. I think, in a roundabout way, she has fully embraced the old saying about being as old as you feel.
Well anyway, here's the answer I gave her.... In my head I feel as though I'm still very young with a huge amount about people and this beautiful planet still to learn. However, also in my head, I also recognise just how much about people I have learned, how deep my respect runs for the individualism of every person, every culture, and every creed - or no creed. I still laugh at toilet humour as I did when I was a child, but I'm also very proud of the fact that I have a child of my own who is growing into a deeply thoughtful, caring young man. Instead of fearing the way each second ticks by, bringing me closer to the parting of ways, I embrace every birthday knowing that the previous year has taught me so very much, and brought me so much joy and pain, laughter and tears, because I am still alive to watch the clouds.
My body is a different matter. The mantra of my doctors since I was 22 has been "but you're too young... oh" as they've read test results. At 42, I was told I had the hips of an 80 year old. "OK, well she can have them back any time" was my reply. Nevertheless, whatever my body or mind may think, I am 51 1/2 years old because a year is 365 days long and I have lived through 51 years and 6 months exactly today :-)
And then I asked the mods to close the thread because it was so far off topic.
I don't think age should only be defined as a way of segregating people, although sometimes doing so can be beneficial if that's what the individual wants. However discrimination and prejudice prosper not because we define other people in ways in which we differ, physically or in any other way. They exist and are fed because people in our society have, for centuries, delineated each other by determining that some of these inherent, beautiful differences are less attractive, less powerful, or at the most basic level, less human than others. I don't think I need to elucidate on that. The shame is that so long after one man persuaded his country that one entire such classification of human beings needed to be wiped out in its entirety, we are still doing it.
Maybe it's some amygdalean danger trigger that makes us see the difference before we see the similarities. Maybe that's why racism, genderism, ageism, religionism are so easily fanned into the flames of hatred. Maybe we all need to just train our responses a little better so that our immediate response to difference isn't fear, but acceptance that humanity comes in all shapes, sizes, colours, beliefs, and ages.
Friday, 19 June 2015
Monday, 1 June 2015
One year on...
Well, almost.
By this time last year, I had moved into my mother's bedroom. I slept on a recliner chair as close to her bed as I could get, and we would hold hands for most of the night.
She had started sleeping with the lamp on, didn't want it switched off. So I lowered it to the floor on the other side of the bed. The muted light warmed the pink walls, made her look beautiful, and reassured both of us without stopping us from sleeping. She would wake up several times a night, and I would feed her water with thickeners in, or squash, or even a cup of tea thickened to gloopiness. This stopped her choking by slowing down its passage over the back of her tongue. She would pull a really funny "That Is YUK" face, and I would say "I know, I know". She would whisper "thank you" as I put the drink back down on her bedside.
Sometimes I would wake to find her sitting on the edge of the bed. I would sit next to her, and the imbalance in our weight would make her tip onto my breast. I would hold her like a child, kiss the top of her head, and give her back a very gentle massage. "This is heaven", she would try to say. She would reach over and rest her hand in my lap, the closest she could get to cuddling me back. Then I would carefully help her back into bed, lifting her legs and making sure her pillows were comfortable. With my kiss on her forehead, she would sigh herself back into sleep.
As June 2014 broke, she had lost the ability to move unaided. Her skin had become extremely sensitive to touch. The nurses explained this was because her body was channelling all its dwindling energy into keeping her internal organs functioning. She had virtually stopped eating, not completely, but only one or two spoonfuls of yoghurt 2 or 3 times a day. Her medication was stopped because she could no longer swallow the tablets, and they no longer had a life-saving or enhancing function to perform.
Her speech had become very limited. "I love you" and "Thank you" still outnumbered in frequency "It's hurting", but not by much. She was still smiling, in between ever-longer bouts of sleepiness. On one very early morning, she said "Give me joy, give me peace" and so I sang the hymn to her, the opening hymn at our wedding.
During the days, Peg, Margaret and I would sit and chat around her bed. Sometimes hushed, but often normally, and frequently laughing. Mum would smile in her sleep. I remember using a hostess trolley to serve tea and coffee, and getting a belly laugh from both sisters. It worked for me! There were no tea spills that day!
But looking back through a year of blurs to a time I can see so very clearly, feel so piercingly, I relive the joy of being told that I had become a wonderful woman and that she was so very proud of me; the pain of watching my dearest, closest friend slip away; the comfort of knowing that she wanted me there, and that I could be useful.
Mum died on 10 June 2014. ELO's Mr Blue Sky was playing on the radio, and Peggy was in the shower. The Macmillan nurses and the district nurse turned up 2 seconds after I had called to Peggy to come now, and rang Margaret. We held her hands, stroked her hair, and said our goodbyes as she gently left us.
Today I can describe these events with tears on my face and pain so fierce that I can't breathe for it. I can never look away from her eyes, her smile, the love which was tangible as it poured from her face. My gentle mother, my lifeblood, my soul, how I miss you.
By this time last year, I had moved into my mother's bedroom. I slept on a recliner chair as close to her bed as I could get, and we would hold hands for most of the night.
She had started sleeping with the lamp on, didn't want it switched off. So I lowered it to the floor on the other side of the bed. The muted light warmed the pink walls, made her look beautiful, and reassured both of us without stopping us from sleeping. She would wake up several times a night, and I would feed her water with thickeners in, or squash, or even a cup of tea thickened to gloopiness. This stopped her choking by slowing down its passage over the back of her tongue. She would pull a really funny "That Is YUK" face, and I would say "I know, I know". She would whisper "thank you" as I put the drink back down on her bedside.
Sometimes I would wake to find her sitting on the edge of the bed. I would sit next to her, and the imbalance in our weight would make her tip onto my breast. I would hold her like a child, kiss the top of her head, and give her back a very gentle massage. "This is heaven", she would try to say. She would reach over and rest her hand in my lap, the closest she could get to cuddling me back. Then I would carefully help her back into bed, lifting her legs and making sure her pillows were comfortable. With my kiss on her forehead, she would sigh herself back into sleep.
As June 2014 broke, she had lost the ability to move unaided. Her skin had become extremely sensitive to touch. The nurses explained this was because her body was channelling all its dwindling energy into keeping her internal organs functioning. She had virtually stopped eating, not completely, but only one or two spoonfuls of yoghurt 2 or 3 times a day. Her medication was stopped because she could no longer swallow the tablets, and they no longer had a life-saving or enhancing function to perform.
Her speech had become very limited. "I love you" and "Thank you" still outnumbered in frequency "It's hurting", but not by much. She was still smiling, in between ever-longer bouts of sleepiness. On one very early morning, she said "Give me joy, give me peace" and so I sang the hymn to her, the opening hymn at our wedding.
During the days, Peg, Margaret and I would sit and chat around her bed. Sometimes hushed, but often normally, and frequently laughing. Mum would smile in her sleep. I remember using a hostess trolley to serve tea and coffee, and getting a belly laugh from both sisters. It worked for me! There were no tea spills that day!
But looking back through a year of blurs to a time I can see so very clearly, feel so piercingly, I relive the joy of being told that I had become a wonderful woman and that she was so very proud of me; the pain of watching my dearest, closest friend slip away; the comfort of knowing that she wanted me there, and that I could be useful.
Mum died on 10 June 2014. ELO's Mr Blue Sky was playing on the radio, and Peggy was in the shower. The Macmillan nurses and the district nurse turned up 2 seconds after I had called to Peggy to come now, and rang Margaret. We held her hands, stroked her hair, and said our goodbyes as she gently left us.
Today I can describe these events with tears on my face and pain so fierce that I can't breathe for it. I can never look away from her eyes, her smile, the love which was tangible as it poured from her face. My gentle mother, my lifeblood, my soul, how I miss you.
Wednesday, 16 April 2014
Monday, 17 March 2014
Upsy downsy day
So this is my first blog of 2014? I'm aghast.
Well anyway.
Today has been one of those days. One of those days when I don't want to do anything. When I don't want to go out. When I am determined to get *something* - just one little thing - ticked off my to-do list. Have I done that little thing? Probably not.
The black dog is snapping at my heels again. Every little bit of inertia, or wanting to crawl under the duvet and hide, of overwhelming sadness, of total apathy, feeds him. And he can jolly well bugger off. Only he won't if I try to ignore him.
I made myself go out and get a haircut. You know it's bad when the lovely haircutting man holds up the mirror and asks your opinion, and your eyes fill up because you desperately need to feel lifted by something, somewhere.
When you walk home and are too tired to make a cuppa. When you look around you and you hear the black dog howling right behind you as you despair of ever seeing the house tidy.
When he stops howling and backs off just a little, because a neighbour stops you in the street to tell you you inspire her.
There's still time to do that list.
Well anyway.
Today has been one of those days. One of those days when I don't want to do anything. When I don't want to go out. When I am determined to get *something* - just one little thing - ticked off my to-do list. Have I done that little thing? Probably not.
The black dog is snapping at my heels again. Every little bit of inertia, or wanting to crawl under the duvet and hide, of overwhelming sadness, of total apathy, feeds him. And he can jolly well bugger off. Only he won't if I try to ignore him.
I made myself go out and get a haircut. You know it's bad when the lovely haircutting man holds up the mirror and asks your opinion, and your eyes fill up because you desperately need to feel lifted by something, somewhere.
When you walk home and are too tired to make a cuppa. When you look around you and you hear the black dog howling right behind you as you despair of ever seeing the house tidy.
When he stops howling and backs off just a little, because a neighbour stops you in the street to tell you you inspire her.
There's still time to do that list.
Tuesday, 31 December 2013
Fare thee well, 2013
And so the year ends and another begins.
What did 2013 mean for me? I can't remember most of it; it's gone, and hopefully left me a better being.
What do I hope for from 2014? That everyone out there finds the meaning of true love - the love that comes with inner peace; with that acceptance of self that, in my generation at least, was guilt-tripped out of us; and that stems from looking outwards. That is my meaning of true love; without it, giving love to others is worthless - why would someone give a gift to someone else if they rejected its inherent value?
Success and failure are just two sides of action. If I have failed, it means that I've tried; and I reject the idea that to try but not succeed, is failure. It's not. Doing nothing, saying nothing, passing by and not trying to give of oneself - that's the only true failure I can think of.
2013 was a mixed year. It's had its lows and even lowers; but it has cemented so many relationships, brought my friends so many new family members, human and otherwise; and some of my friends have lost family or friends, human or otherwise. The pain and the joy are likewise two sides of the same coin - they mean that love has been shared. To think of someone, positively or negatively, is to bestow a gift on them - the time and effort to generate that thought.
And so another year is born. Long live the New Year, its hopes and dreams, its fears and torments, its strengths and its weaknesses. My hope just for me is that I have the wisdom to shape it for good, and to resist those forces inside and outside that would shape it in any other way.
May 2014 bless you with love, whoever you are and wherever you may be.
What did 2013 mean for me? I can't remember most of it; it's gone, and hopefully left me a better being.
What do I hope for from 2014? That everyone out there finds the meaning of true love - the love that comes with inner peace; with that acceptance of self that, in my generation at least, was guilt-tripped out of us; and that stems from looking outwards. That is my meaning of true love; without it, giving love to others is worthless - why would someone give a gift to someone else if they rejected its inherent value?
Success and failure are just two sides of action. If I have failed, it means that I've tried; and I reject the idea that to try but not succeed, is failure. It's not. Doing nothing, saying nothing, passing by and not trying to give of oneself - that's the only true failure I can think of.
2013 was a mixed year. It's had its lows and even lowers; but it has cemented so many relationships, brought my friends so many new family members, human and otherwise; and some of my friends have lost family or friends, human or otherwise. The pain and the joy are likewise two sides of the same coin - they mean that love has been shared. To think of someone, positively or negatively, is to bestow a gift on them - the time and effort to generate that thought.
And so another year is born. Long live the New Year, its hopes and dreams, its fears and torments, its strengths and its weaknesses. My hope just for me is that I have the wisdom to shape it for good, and to resist those forces inside and outside that would shape it in any other way.
May 2014 bless you with love, whoever you are and wherever you may be.
Monday, 16 December 2013
It's the end of a decade... Abba
Today is my last Monday as a forty-something. I'm as excited as a child that on Thursday I face the next 10 years even more liberated and liberating. But I've been reflecting on the year, and the decade, and thought it time to blog again.
When I turned 40 in 2003, Great Chief White Hair took me for a day out in London. Young Master was then 4 1/2 and it was a school day, so he didn't come with us. We flew on the London Eye, had a very posh dinner in the very posh restaurant in the OXO Tower, and went to see a theatre performance of The Hobbit which had a cast of about 5 people. It was a magical day.
Shortly after that, my GP told me that after 40 my body would break down - how right he was!
2003 was also the year that I bought my first computer. My father's daughter, I've always loved electronic gadgets, and I often think of him when I'm tapping away at the screen, remembering the hours he used to spend teaching himself to program his first computer. He taught me how to use MS-DOS to get it to tell the time - but I never mastered anything more technical than that. All I remember now is "if A = B, run like hell" or something. Taking my own machine out of its many boxes, plugging it all in, and expecting it to explode as I put the wrong plug in the wrong socket - so exciting. Of all the life-changing events that happened in this decade, getting a computer was probably one of the most subtle. It should have had fanfares and drum-rolls or something.
I could do a year-by-year documentary, but I'm not going to. Although the scales would probably still tip towards the good rather than the bad, it's been.... an interesting decade. I'm still making the same mistakes, but I've learned far more about who I am, and about the amazing men I share my life with, than in any other period of my life.
So what about 2013? It's been another interesting year. By interesting I mean that it's had good and bad but it's never been boring. I am somewhat more debilitated now than I was at the start of the year, but then I have degenerative problems so that's to be expected. But I've been blessed with the love and support and friendship of so many wonderful people.
This year I lost a cousin who meant the world to me. I couldn't go to his funeral, couldn't even express my sympathy for my cousins in words. He had lost his teenage daughter in January, and the loss within his own family is unimaginable. I remember Paul as one of my only childhood playmates, when my cousins used to visit with my grandmother; I remember the time she won the pools - but he'd lost the ticket. I remember visiting Nanna Annie and Paul roaring up on his motorbike...
It's been a difficult year in many ways. Some of it will carry forward to next year; some of it can be thankfully left behind without a backwards glance. But it's also been a huge year. A year of love, laughter, peace and fulfillment. What more can I ask?
When I turned 40 in 2003, Great Chief White Hair took me for a day out in London. Young Master was then 4 1/2 and it was a school day, so he didn't come with us. We flew on the London Eye, had a very posh dinner in the very posh restaurant in the OXO Tower, and went to see a theatre performance of The Hobbit which had a cast of about 5 people. It was a magical day.
Shortly after that, my GP told me that after 40 my body would break down - how right he was!
2003 was also the year that I bought my first computer. My father's daughter, I've always loved electronic gadgets, and I often think of him when I'm tapping away at the screen, remembering the hours he used to spend teaching himself to program his first computer. He taught me how to use MS-DOS to get it to tell the time - but I never mastered anything more technical than that. All I remember now is "if A = B, run like hell" or something. Taking my own machine out of its many boxes, plugging it all in, and expecting it to explode as I put the wrong plug in the wrong socket - so exciting. Of all the life-changing events that happened in this decade, getting a computer was probably one of the most subtle. It should have had fanfares and drum-rolls or something.
I could do a year-by-year documentary, but I'm not going to. Although the scales would probably still tip towards the good rather than the bad, it's been.... an interesting decade. I'm still making the same mistakes, but I've learned far more about who I am, and about the amazing men I share my life with, than in any other period of my life.
So what about 2013? It's been another interesting year. By interesting I mean that it's had good and bad but it's never been boring. I am somewhat more debilitated now than I was at the start of the year, but then I have degenerative problems so that's to be expected. But I've been blessed with the love and support and friendship of so many wonderful people.
This year I lost a cousin who meant the world to me. I couldn't go to his funeral, couldn't even express my sympathy for my cousins in words. He had lost his teenage daughter in January, and the loss within his own family is unimaginable. I remember Paul as one of my only childhood playmates, when my cousins used to visit with my grandmother; I remember the time she won the pools - but he'd lost the ticket. I remember visiting Nanna Annie and Paul roaring up on his motorbike...
It's been a difficult year in many ways. Some of it will carry forward to next year; some of it can be thankfully left behind without a backwards glance. But it's also been a huge year. A year of love, laughter, peace and fulfillment. What more can I ask?
Sunday, 6 October 2013
Mugged by a memory
Ever since I woke up this morning, I've been revisiting a memory from early childhood. Why today, and why so vividly, I have no idea.
I was with my father in a market in London. Right now I can feel his hand wrapped tightly around mine, warm and comforting, as we crossed a busy main road. I was so little, and he seemed so big to me, his youngest daughter - dark, with almost jet-black hair. We walked into the market and he became engrossed in a stall selling electrical gizmos. I didn't wander, but was far enough away for a blond, tall man in a yellow sheepskin coat to approach me and hand me a leaflet, saying "give this to your dad". He was friendly and smiled, and called me pretty so I took it.
When I handed it over as instructed, Dad did something that, on reflection, was just amazing. He glanced at it, asked me gently who had given it to me; I pointed at the man who hadn't walked far away. Dad strode up to him (bearing in mind this guy was considerably taller than Dad's 5'6) and engaged him in chat before yelling in his face that he was a coward to use children to spread his poison. "If you've got anything to say, you say it to me, not my little girl". The leaflet went in the bin, I asked but wasn't told what it said, and I got a stern lecture about talking to strangers - even nice, smiley, friendly strangers. I can still remember the look of frozen surprise on the man's face as my fair, terribly English father grabbed the hand of the little, dark girl he'd encountered earlier.
It was many years later that we were in another (or the same?) market, and another (or the same?) man in a yellow sheepskin coat was handing out flyers. This time, he sneaked one into my hand. This time, I read it and stuck it in the next bin without having any understanding of what the National Front stood for.
I was with my father in a market in London. Right now I can feel his hand wrapped tightly around mine, warm and comforting, as we crossed a busy main road. I was so little, and he seemed so big to me, his youngest daughter - dark, with almost jet-black hair. We walked into the market and he became engrossed in a stall selling electrical gizmos. I didn't wander, but was far enough away for a blond, tall man in a yellow sheepskin coat to approach me and hand me a leaflet, saying "give this to your dad". He was friendly and smiled, and called me pretty so I took it.
When I handed it over as instructed, Dad did something that, on reflection, was just amazing. He glanced at it, asked me gently who had given it to me; I pointed at the man who hadn't walked far away. Dad strode up to him (bearing in mind this guy was considerably taller than Dad's 5'6) and engaged him in chat before yelling in his face that he was a coward to use children to spread his poison. "If you've got anything to say, you say it to me, not my little girl". The leaflet went in the bin, I asked but wasn't told what it said, and I got a stern lecture about talking to strangers - even nice, smiley, friendly strangers. I can still remember the look of frozen surprise on the man's face as my fair, terribly English father grabbed the hand of the little, dark girl he'd encountered earlier.
It was many years later that we were in another (or the same?) market, and another (or the same?) man in a yellow sheepskin coat was handing out flyers. This time, he sneaked one into my hand. This time, I read it and stuck it in the next bin without having any understanding of what the National Front stood for.
Tuesday, 1 October 2013
Community spirit
I laugh when people say "there's no such thing as community any more" or that the interweb has somehow stopped people from talking to each other. I talk far far more with my fingers than I have ever done with my mouth, and trust me that's saying something. My Facebook communities, comprised of family, friends, colleagues, and people who share my interests, each barely distinguishable from the others like some fat and many-circled Venn Diagram, raised a huge amount of money last year for McMillan's Nurses. This year they're sending me old mobile phones for my great-nephew.
In real life it's the same. I lost count yesterday of the number of complete strangers who smiled at me, stopped for me on my scooter, or that I exchanged words of thanks with for pausing to let me go past, or vice versa. Tell me that's not community.
I've been interviewed for several jobs recently, but not been employed for any of them. Disheartening, but not the end of the world. Thing is, I have a brain and skills, I should be able to employ myself. No start-up fund in the bank though, and it's notoriously hard to kick-start a craft business. The demand is there, but overheads are a costly thing to have when Ebay charges are so low.
So I've listened to what people have said to me for ever - do something you love. My first love would be working with children, but that's simply not practical any more. Plus I'm sure my hairy feet would scare them and my laugh give them nightmares. So I started to think about crafting.
Since working for Anni, I've had several pieces of my work pictured on the front page of magazines and online. It's a fantastic feeling - I am not the brain behind a pattern, but the hands that make it real. It was this realisation that gave me the self-confidence to apply for those jobs in the first place. So I've been hatching a plan and the first steps are in motion - a community group that uses crafting for therapy.
My own skills are fairly limited - I can only just crochet, for example; but I can knit and make cards, use a loom, and I can teach. And I know firsthand the healing power of creativity. I've taken the first steps - and am waiting for a few people to get back to me. Venues, funding, advertising - all just a few phone calls away. Yes those phone calls have hurt me physically, but hey, I can spend the rest of the day knitting. I'm happy.
In real life it's the same. I lost count yesterday of the number of complete strangers who smiled at me, stopped for me on my scooter, or that I exchanged words of thanks with for pausing to let me go past, or vice versa. Tell me that's not community.
I've been interviewed for several jobs recently, but not been employed for any of them. Disheartening, but not the end of the world. Thing is, I have a brain and skills, I should be able to employ myself. No start-up fund in the bank though, and it's notoriously hard to kick-start a craft business. The demand is there, but overheads are a costly thing to have when Ebay charges are so low.
So I've listened to what people have said to me for ever - do something you love. My first love would be working with children, but that's simply not practical any more. Plus I'm sure my hairy feet would scare them and my laugh give them nightmares. So I started to think about crafting.
Since working for Anni, I've had several pieces of my work pictured on the front page of magazines and online. It's a fantastic feeling - I am not the brain behind a pattern, but the hands that make it real. It was this realisation that gave me the self-confidence to apply for those jobs in the first place. So I've been hatching a plan and the first steps are in motion - a community group that uses crafting for therapy.
My own skills are fairly limited - I can only just crochet, for example; but I can knit and make cards, use a loom, and I can teach. And I know firsthand the healing power of creativity. I've taken the first steps - and am waiting for a few people to get back to me. Venues, funding, advertising - all just a few phone calls away. Yes those phone calls have hurt me physically, but hey, I can spend the rest of the day knitting. I'm happy.
Sunday, 21 April 2013
Busybeeeeee
About time I blogged again after the last mammoth effort. And this time it's about something wholly positive.
I have a job.
It kind of happened by accident. An online friend from way back had gone on to become a leading knitwear designer, and one day I read her blog. She posted about sample knitters, how it works and what they do, and I was hooked. Well "needled" just isn't appropriate here. I contacted her, and within days was knitting my first sample garment, a pretty shawlette in blue that has since been published.
So what is sample knitting? Well, all the garments you see draped over Knitting Pattern Man don't get there by accident. They are created by designers who either knit the garment themselves, or assign it to one or more sample knitters to produce. The designer checks it over, and often completes any finishing work themselves (eg blocking, sewing in ends etc), and then sends it off to whichever publication has commissioned it. Or they may include it in their own website, or on Ravelry, a huge needlework community.
So this is what I now do. As well as knitting the sample, an integral part of the work is "technical editing" - making sure the pattern contains no errors, and correcting any that are found. It's a very rewarding job; perhaps not in terms of money (the hourly rate is very low) but I get to play with yarns that I probably wouldn't choose for myself, or in many cases, are beyond my purse; I can experiment with new colours; I am learning *all* the time, be it techniques, or tips; and I don't have the hassle of finding a home for the completed garment when it's finished - it sails off into the sunset and the next time I see it will hopefully be when it is adorned on a model whose job is to make my handiwork look its very best.
Best of all, I get to call knitting "my day job".
My first designer deals mostly in fine lace yarn. I have just signed up for another designer who works in the double-knit to chunky range, and in cables. So lots of variety, lots of keeping busy, the odd pay cheque, and loads and loads of knitting.
Happy me!
I have a job.
It kind of happened by accident. An online friend from way back had gone on to become a leading knitwear designer, and one day I read her blog. She posted about sample knitters, how it works and what they do, and I was hooked. Well "needled" just isn't appropriate here. I contacted her, and within days was knitting my first sample garment, a pretty shawlette in blue that has since been published.
So what is sample knitting? Well, all the garments you see draped over Knitting Pattern Man don't get there by accident. They are created by designers who either knit the garment themselves, or assign it to one or more sample knitters to produce. The designer checks it over, and often completes any finishing work themselves (eg blocking, sewing in ends etc), and then sends it off to whichever publication has commissioned it. Or they may include it in their own website, or on Ravelry, a huge needlework community.
So this is what I now do. As well as knitting the sample, an integral part of the work is "technical editing" - making sure the pattern contains no errors, and correcting any that are found. It's a very rewarding job; perhaps not in terms of money (the hourly rate is very low) but I get to play with yarns that I probably wouldn't choose for myself, or in many cases, are beyond my purse; I can experiment with new colours; I am learning *all* the time, be it techniques, or tips; and I don't have the hassle of finding a home for the completed garment when it's finished - it sails off into the sunset and the next time I see it will hopefully be when it is adorned on a model whose job is to make my handiwork look its very best.
Best of all, I get to call knitting "my day job".
My first designer deals mostly in fine lace yarn. I have just signed up for another designer who works in the double-knit to chunky range, and in cables. So lots of variety, lots of keeping busy, the odd pay cheque, and loads and loads of knitting.
Happy me!
Sunday, 30 December 2012
My ATOS story; MPs and adjudicators and a sorry conclusion
So now to the end of my story.
L, the lovely lady at DWP, actually wept when I rang her to ask what on earth could I do next. She simply couldn't believe the outcome, and her frustration on my behalf was tangible. She sent me an appeal form for the matter to go to tribunal; and I contacted my MP. I sent him reams of emails that had passed between us and DWP over the months; and to give him his due, he acted quickly and went to the head honcho at DWP for an explanation. I felt at once elated but also just a little bit cheated by the response - there was no acknowledgment of the failings in my case, or explanation that stood up to scrutiny. I was, however, to have my full award reinstated without the need for future renewals (although that's turned out to be a shortlived relief with the impending doom that is PIP).
So what next? Without the satisfaction of any kind of worthwhile or meaningful apology (DWP bloke did say sorry, but I didn't believe him), I decided to take the case to the Ombudsman - but to do that I had to undergo the hurdle that was DWP's complaint system. We wrote to the Adjudicator - only to find that that office is just another extension of DWP, manned by DWP staff. It took them 18 months to deal with our complaint, during which time they made repeated errors of their own, and even tried to dictate what we could and couldn't complain about!!! I really am not exaggerating, we even had to use their labels and terms. They offered me a really paltry sum for our phone calls, and denied that there was any kind of case to answer. And I was simply too drained, after all the lies, and hurt, and indignity, to take it any further. I never even checked my bank account to see if they did, in fact, make the payment.
And to this day I feel like I let everyone down by just giving up. But I no longer had any fight left. Maybe someone will read this and think "ah, you got the money you wanted, that's all you did it for" - but they'd be very, very wrong.
What will the future hold? I'm pretty certain that PIP will remove such independence as I now have. My conditions are already listed to be constantly reviewed, as they apparently aren't as chronic, degenerative or debilitating as the rest of the world believes. I haven't got the power for that kind of fight ever again. I doubt I'll ever make another claim again.
I may have got the money in the long run, but deep down, I know that they've won.
L, the lovely lady at DWP, actually wept when I rang her to ask what on earth could I do next. She simply couldn't believe the outcome, and her frustration on my behalf was tangible. She sent me an appeal form for the matter to go to tribunal; and I contacted my MP. I sent him reams of emails that had passed between us and DWP over the months; and to give him his due, he acted quickly and went to the head honcho at DWP for an explanation. I felt at once elated but also just a little bit cheated by the response - there was no acknowledgment of the failings in my case, or explanation that stood up to scrutiny. I was, however, to have my full award reinstated without the need for future renewals (although that's turned out to be a shortlived relief with the impending doom that is PIP).
So what next? Without the satisfaction of any kind of worthwhile or meaningful apology (DWP bloke did say sorry, but I didn't believe him), I decided to take the case to the Ombudsman - but to do that I had to undergo the hurdle that was DWP's complaint system. We wrote to the Adjudicator - only to find that that office is just another extension of DWP, manned by DWP staff. It took them 18 months to deal with our complaint, during which time they made repeated errors of their own, and even tried to dictate what we could and couldn't complain about!!! I really am not exaggerating, we even had to use their labels and terms. They offered me a really paltry sum for our phone calls, and denied that there was any kind of case to answer. And I was simply too drained, after all the lies, and hurt, and indignity, to take it any further. I never even checked my bank account to see if they did, in fact, make the payment.
And to this day I feel like I let everyone down by just giving up. But I no longer had any fight left. Maybe someone will read this and think "ah, you got the money you wanted, that's all you did it for" - but they'd be very, very wrong.
What will the future hold? I'm pretty certain that PIP will remove such independence as I now have. My conditions are already listed to be constantly reviewed, as they apparently aren't as chronic, degenerative or debilitating as the rest of the world believes. I haven't got the power for that kind of fight ever again. I doubt I'll ever make another claim again.
I may have got the money in the long run, but deep down, I know that they've won.
My ATOS story - the appeal:. ATOS and the GMC
So what about the part played in this by ATOS? Again this is a bit complicated - some of the information I learned about the ATOS procedures and ethics only came to light because I decided to take my case to the General Medical Council (GMC).
To cut a long story short (hehehe even I have to chuckle at that little piece of irony!) the report submitted to DWP by Dr X bore little resemblance to the "examination" which had taken place (if you remember, asking me to stand up for 1 minute, and a gentle prod of my ankles and wrists). Don't get me wrong - this doctor had done his very best not to inflict damage or pain on me, something I am actually grateful for. But by not seeing me try to walk, or mount my staircase, or even permitting me to answer some of his questions fully, he also deprived me of the opportunity to make my case properly. And I'm afraid to say that his report was inaccurate, incomplete, and contained some fallacies. OK, in my opinion he lied.
One of my ankles is a bit puffy - has been since I was a teenager and kept turning it over at school. Accordingly, the report claimed that I walk with a limp on that ankle. Remember he didn't actually see me walk - the limp was invented. He claimed that I had no problem with our narrow and steep staircase - again without seeing me attempt it. And while my mobility scooter attracted a lot of attention, the wheelchair and zimmer frame which he twice had to walk past on his way through the hall, received no comment at all.
Other omissions were the amount of nagging Great Chief White Hair has to do to persuade me that it's time to take my medication; that he has to open jars and pots and containers for me and count them out; that he prepares my lunch and a hot flask before he goes to work in the morning, and prepares the evening meals for the family. I was awarded the tiny bit of care component only because he did report my difficulty with holding and using a knife (one of the only things we told him that actually got written down).
The most telling inaccuracy? Assumption? Fabrication? also related to my ability to walk. Here I need to deviate a little. As part of the GMC disciplinary process, Dr X was given the opportunity to defend himself in writing. Apparently he "knew" I could walk more than 200 metres with "occasional" pauses and rests, because of ATOS/DWP criteria - in short, I was not a paraplegic, and I didn't have heart or chest problems. Or, in other words, "them's the orders, guv" (my paraphrasing).
Both ATOS and GMC upheld my complaint - although the latter decision was eventually overturned. The GMC case even earned a very brief line in an article about hard-done-by ATOS doctors. While the ATOS decision was made some time before the GMC disciplinary proceedings, as I've already explained, it did nothing to help my appeal, and in fact the very next post that brought me the ATOS decision delivered the reconsideration - another aspect we found highly suspect. So what of the GMC case?
This happened some months after the financial side of things had been rectified, so the appeal hearing (and less importantly the newspaper article) were both unfair, in my opinion, to proclaim that the complaint would never have been made (by me) if I hadn't been stripped of my DLA. That's such an enormous deflection that it takes my breath away. The original sanctions laid against Dr X by the GMC when they found for me were overturned quite literally on a medi-legal technicality. He was disciplined under the section of their rulebook which deals with the doctor-patient relationship which outlines the duty of care that should exist.
The appeal lawyers successfully argued, quite simply, that in the situation we were in, when a doctor is employed by ATOS to conduct a medical examination of a patient, there is no doctor-patient relationship, nor any duty of care towards the claimant by the doctor conducting the examination.
To cut a long story short (hehehe even I have to chuckle at that little piece of irony!) the report submitted to DWP by Dr X bore little resemblance to the "examination" which had taken place (if you remember, asking me to stand up for 1 minute, and a gentle prod of my ankles and wrists). Don't get me wrong - this doctor had done his very best not to inflict damage or pain on me, something I am actually grateful for. But by not seeing me try to walk, or mount my staircase, or even permitting me to answer some of his questions fully, he also deprived me of the opportunity to make my case properly. And I'm afraid to say that his report was inaccurate, incomplete, and contained some fallacies. OK, in my opinion he lied.
One of my ankles is a bit puffy - has been since I was a teenager and kept turning it over at school. Accordingly, the report claimed that I walk with a limp on that ankle. Remember he didn't actually see me walk - the limp was invented. He claimed that I had no problem with our narrow and steep staircase - again without seeing me attempt it. And while my mobility scooter attracted a lot of attention, the wheelchair and zimmer frame which he twice had to walk past on his way through the hall, received no comment at all.
Other omissions were the amount of nagging Great Chief White Hair has to do to persuade me that it's time to take my medication; that he has to open jars and pots and containers for me and count them out; that he prepares my lunch and a hot flask before he goes to work in the morning, and prepares the evening meals for the family. I was awarded the tiny bit of care component only because he did report my difficulty with holding and using a knife (one of the only things we told him that actually got written down).
The most telling inaccuracy? Assumption? Fabrication? also related to my ability to walk. Here I need to deviate a little. As part of the GMC disciplinary process, Dr X was given the opportunity to defend himself in writing. Apparently he "knew" I could walk more than 200 metres with "occasional" pauses and rests, because of ATOS/DWP criteria - in short, I was not a paraplegic, and I didn't have heart or chest problems. Or, in other words, "them's the orders, guv" (my paraphrasing).
Both ATOS and GMC upheld my complaint - although the latter decision was eventually overturned. The GMC case even earned a very brief line in an article about hard-done-by ATOS doctors. While the ATOS decision was made some time before the GMC disciplinary proceedings, as I've already explained, it did nothing to help my appeal, and in fact the very next post that brought me the ATOS decision delivered the reconsideration - another aspect we found highly suspect. So what of the GMC case?
This happened some months after the financial side of things had been rectified, so the appeal hearing (and less importantly the newspaper article) were both unfair, in my opinion, to proclaim that the complaint would never have been made (by me) if I hadn't been stripped of my DLA. That's such an enormous deflection that it takes my breath away. The original sanctions laid against Dr X by the GMC when they found for me were overturned quite literally on a medi-legal technicality. He was disciplined under the section of their rulebook which deals with the doctor-patient relationship which outlines the duty of care that should exist.
The appeal lawyers successfully argued, quite simply, that in the situation we were in, when a doctor is employed by ATOS to conduct a medical examination of a patient, there is no doctor-patient relationship, nor any duty of care towards the claimant by the doctor conducting the examination.
My ATOS story - the appeal - DWP
Here's where it starts to get complicated. I have to split this into two or possibly three different parts, although these strands were all happening at the same time. So this strand will concentrate on the DWP.
After opening and reading the award letter, I went to pieces. Using the phone is horrible for various reasons - physically holding it, trying to have a conversation, especially with strangers who can't be expected to fill in gaps in speech for me, or understand when I'm silent that I'm not being rude, or that when I'm crying, I'm actually not shouting (a mistake that has been made more than once). Suffice to say that my original call requesting information and a copy of the medical report was completely ignored. After waiting a month, I was told to wait another fortnight. After that too passed without any sign of my paperwork, I became so emotionally unstable that K had to take over.
And this is the point at which I made contact with L, who rapidly became our DWP guardian angel. L arranged for us to collect a copy of the medical reports submitted by my consultant and by the ATOS doctor, Dr X, which she had faxed to my local jobcentre plus.
My own consultant had done nothing to fill in the forms other than sign them and return them blank. This, I surmise, was the reason for the assessment. Had the DWP contacted the hospital to find out why? Of course not. But at least here was something I could do for myself. I contacted the hospital, had an appointment with the rheumatology nurse specialist most familiar with me, and she wrote a full and detailed letter outlining each and every one of my medical conditions, the impact of each on my life, and the fact that these were all debilitating, chronic and degenerative conditions. They're not going to get better, only worse, and I have to live life as best I can with them. This letter was dispatched direct to DWP, copied to me, within a month of the blank form.
Dr X's report was a whole different ball game, to be dealt with in the next chapter. I made a formal complaint about it, which resulted in it being rubbished and overturned by a senior ATOS manager. Despite promises that the formal complaint would not hold up the reconsideration, the only time that L let me down in the months to come (and it wasn't her fault), the reconsideration, which should have taken 11 weeks, in fact took nearly twice that. Armed with evidence that the ATOS report was completely discredited, and another letter backing up every one of my claims from medical staff who actually knew my case history, 3 months after my appeal, I received the reconsideration decision. The same decision maker had, surprise surprise, upheld her own original decision despite all the evidence to the contrary. And her evidence was questionably an unsigned form offering an "expert" medical opinion from an unnamed individual who had not, nor ever would, so much as send me an email; and of which there remains no trace on DWP's own computer system. I leave you to draw your own conclusions.
After opening and reading the award letter, I went to pieces. Using the phone is horrible for various reasons - physically holding it, trying to have a conversation, especially with strangers who can't be expected to fill in gaps in speech for me, or understand when I'm silent that I'm not being rude, or that when I'm crying, I'm actually not shouting (a mistake that has been made more than once). Suffice to say that my original call requesting information and a copy of the medical report was completely ignored. After waiting a month, I was told to wait another fortnight. After that too passed without any sign of my paperwork, I became so emotionally unstable that K had to take over.
And this is the point at which I made contact with L, who rapidly became our DWP guardian angel. L arranged for us to collect a copy of the medical reports submitted by my consultant and by the ATOS doctor, Dr X, which she had faxed to my local jobcentre plus.
My own consultant had done nothing to fill in the forms other than sign them and return them blank. This, I surmise, was the reason for the assessment. Had the DWP contacted the hospital to find out why? Of course not. But at least here was something I could do for myself. I contacted the hospital, had an appointment with the rheumatology nurse specialist most familiar with me, and she wrote a full and detailed letter outlining each and every one of my medical conditions, the impact of each on my life, and the fact that these were all debilitating, chronic and degenerative conditions. They're not going to get better, only worse, and I have to live life as best I can with them. This letter was dispatched direct to DWP, copied to me, within a month of the blank form.
Dr X's report was a whole different ball game, to be dealt with in the next chapter. I made a formal complaint about it, which resulted in it being rubbished and overturned by a senior ATOS manager. Despite promises that the formal complaint would not hold up the reconsideration, the only time that L let me down in the months to come (and it wasn't her fault), the reconsideration, which should have taken 11 weeks, in fact took nearly twice that. Armed with evidence that the ATOS report was completely discredited, and another letter backing up every one of my claims from medical staff who actually knew my case history, 3 months after my appeal, I received the reconsideration decision. The same decision maker had, surprise surprise, upheld her own original decision despite all the evidence to the contrary. And her evidence was questionably an unsigned form offering an "expert" medical opinion from an unnamed individual who had not, nor ever would, so much as send me an email; and of which there remains no trace on DWP's own computer system. I leave you to draw your own conclusions.
My ATOS story - the examination
Because my conditions can cause daily variations in state of - not health, I'm not ill - ability? Energy? Mobility? - all of these and more, I was made to renew my claim annually, filling in a form that was many, many pages long, often requiring the same information to be repeated in different ways throughout. This takes literally weeks. All the problems of daily life that I shut my eyes and mind to in order to function through the day, have to be raked up and set down on the online form. It can be saved, but take too long to complete the form, and the .gov website dumps it and you have to start again from the beginning. Not just the problems - the indignities and the dependencies, the reliance on other people to carry out functions on one's behalf that were such a milestone when accomplished as a toddler. Take your deepest fears, your harshest shame, and set them down for scrutiny by anonymous, unbelieving, and faceless civil servants, and hope and pray that your case worker and decision maker actually might care.
So it was when I submitted my renewal claim. My first claim had been straightforward, and I had been awarded full care and mobility allowances. The second awarded full care and medium mobility, again without assessment. The second renewal was to be a whole new boardgame. I was to be assessed at home by a doctor who would conduct a medical exam on behalf of ATOS. That's when the fun and the lies began.
The doctor arrived with a bare 2 minutes of the allotted appointment hour to spare. By this time I was literally shaking with anxiety and apprehension of what was to come. But he seemed sympathetic, was gentle, and seemed to be making sufficient notes when Great Chief White Hair and I supplied answers to his questions. He was so full of empathy, in fact, that on two occasions he told me to stop trying to talk to him as I was struggling so much to form sentences. From that point he would only ask yes or no questions.
The rest of the "examination" followed along similar lines. I was asked to stand up for one minute, which I did with the help of my rise/recline chair and two walking sticks. Brief examinations were made of my wrists and ankles. Questions were asked, and full answers given, regardless of instructions not to speak, by both GCWH and myself. 20 minutes after arriving, including the time spent writing the report in the house and in car, the doctor drove off. He hadn't seen me take a single step, or even try to walk unaided. As he drove off, I collapsed in a heap, thankful that the ordeal was over, and believing that until the letter arrived confirming my new award, I could go back to living life without constant focus on the things I couldn't do, positive and full of fight.
Within a month. I received my award letter. I had lost all my mobility award, and all but the most basic level of care component.
So it was when I submitted my renewal claim. My first claim had been straightforward, and I had been awarded full care and mobility allowances. The second awarded full care and medium mobility, again without assessment. The second renewal was to be a whole new boardgame. I was to be assessed at home by a doctor who would conduct a medical exam on behalf of ATOS. That's when the fun and the lies began.
The doctor arrived with a bare 2 minutes of the allotted appointment hour to spare. By this time I was literally shaking with anxiety and apprehension of what was to come. But he seemed sympathetic, was gentle, and seemed to be making sufficient notes when Great Chief White Hair and I supplied answers to his questions. He was so full of empathy, in fact, that on two occasions he told me to stop trying to talk to him as I was struggling so much to form sentences. From that point he would only ask yes or no questions.
The rest of the "examination" followed along similar lines. I was asked to stand up for one minute, which I did with the help of my rise/recline chair and two walking sticks. Brief examinations were made of my wrists and ankles. Questions were asked, and full answers given, regardless of instructions not to speak, by both GCWH and myself. 20 minutes after arriving, including the time spent writing the report in the house and in car, the doctor drove off. He hadn't seen me take a single step, or even try to walk unaided. As he drove off, I collapsed in a heap, thankful that the ordeal was over, and believing that until the letter arrived confirming my new award, I could go back to living life without constant focus on the things I couldn't do, positive and full of fight.
Within a month. I received my award letter. I had lost all my mobility award, and all but the most basic level of care component.
My ATOS story - prologue
It's taken me years to feel sufficiently removed from these events to be able to blog about them. This is a double-edged sword - time has softened the impact, but it's also removed some of the memories - and I'm not yet strong enough to reopen my several-inches-thick file to revisit the pain.
I didn't claim Disability Living Allowance when I first became disabled. It was only after I had a severe outbreak of both spondylarthropathy and psoriatic arthritis that left me hospitalised for several weeks in Nov and Dec 2006 that it became apparent these were going to be life-changing, in a way that fibromyalgia hadn't been. To explain these diseases briefly, fibromyalgia is also known as chronic pain syndrome - it affects the muscles, and apart from constant, inexplicable and incurable pain, fatigue akin to that of M E sufferers; severe sleep deprivation and concentration, cognitive and memory problems caused by both the lack of sleep plus the effects of all the various pain and other medications (usually anti-depressants used as muscle relaxants).
Spondyloarthropathy is somewhere between ankylosing spondylitis and rheumatoid arthritis. It is an inflammatory arthritis that attacks the spine and every joint in the body. Psoriatic arthritis is another inflammatory arthritis that usually accompanies psoriasis. I have been extremely lucky in that the arthritis presented before the skin disorder - this means that the medication I take has kept the latter at bay, and I don't have psoriasis to contend with as well. PA attacks the joints in the hands and feet. 6 years on, I now also have the early stages of osteoarthritis - the ordinary wear and tear of joints that comes with age.
So basically my muscles and my joints hate me. I take very strong meds that suppress my autoimmune system, wear me out when administered, and make me nauseous and my hair fall out. But they keep me walking.
Life is a list of priorities. Shower OR go out - not both on the same day. Iron OR cook. Study OR hold a conversation. Recommended reading is the website called "But you don't look sick" - the spoon theory describes my life much better than I can. But in brief - I have a limited amount of energy. Getting out of bed spends some of my precious daily store. Getting dressed a bit more. Washing a bit more... So it goes on. Exercise and healthy eating can increase my energy stash - but it can also diminish for absolutely no reason.
This is a sketchy outline of my life when I renewed my application for DLA 2 - or was it 3? years ago.
I didn't claim Disability Living Allowance when I first became disabled. It was only after I had a severe outbreak of both spondylarthropathy and psoriatic arthritis that left me hospitalised for several weeks in Nov and Dec 2006 that it became apparent these were going to be life-changing, in a way that fibromyalgia hadn't been. To explain these diseases briefly, fibromyalgia is also known as chronic pain syndrome - it affects the muscles, and apart from constant, inexplicable and incurable pain, fatigue akin to that of M E sufferers; severe sleep deprivation and concentration, cognitive and memory problems caused by both the lack of sleep plus the effects of all the various pain and other medications (usually anti-depressants used as muscle relaxants).
Spondyloarthropathy is somewhere between ankylosing spondylitis and rheumatoid arthritis. It is an inflammatory arthritis that attacks the spine and every joint in the body. Psoriatic arthritis is another inflammatory arthritis that usually accompanies psoriasis. I have been extremely lucky in that the arthritis presented before the skin disorder - this means that the medication I take has kept the latter at bay, and I don't have psoriasis to contend with as well. PA attacks the joints in the hands and feet. 6 years on, I now also have the early stages of osteoarthritis - the ordinary wear and tear of joints that comes with age.
So basically my muscles and my joints hate me. I take very strong meds that suppress my autoimmune system, wear me out when administered, and make me nauseous and my hair fall out. But they keep me walking.
Life is a list of priorities. Shower OR go out - not both on the same day. Iron OR cook. Study OR hold a conversation. Recommended reading is the website called "But you don't look sick" - the spoon theory describes my life much better than I can. But in brief - I have a limited amount of energy. Getting out of bed spends some of my precious daily store. Getting dressed a bit more. Washing a bit more... So it goes on. Exercise and healthy eating can increase my energy stash - but it can also diminish for absolutely no reason.
This is a sketchy outline of my life when I renewed my application for DLA 2 - or was it 3? years ago.
Sunday, 14 October 2012
Autumn leaves, but not before the sunshine...
So autumn is here, one of my favourite times of year. What have I been doing? Pretty much nothing really.
After a month on fluoxetine, I traded for Sertraline, and things are much more evenly-keeled. I'm starting, very slowly, to overcome the insidious agoraphobia that creeps up when I'm not looking; the mood swings are back under control(ish); and I am starting to look at the next day in my diary. Don't want to overdo it; next week is far too scary to face.
I've been knitting, of course; and have almost finished a project I started a couple of weeks ago, and which is giving me a big kick because I think it's gorgeous.
I am desperately worried about members of my family that I care for very much. They are fighting stuff I can't begin to imagine. Some people liken living with pain to suffering with cancer, expressing the view that the former is worse than the latter, and I can tell you now, it is NOT a legitimate comparison.
I live with pain, it's my daily companion, physical and mental. I don't know what tomorrow will bring, or this afternoon, or even the next hour. I get friendly catcalls when I announce I'm off to bed at 7 in the evening - I don't care, it's a good laugh, and the joke's on me. But I know there will be a tomorrow, a this afternoon, a next hour. And yes, I know that it will probably be teeth-gritting. But it's life. And it's as full of laughter as I can possibly, humanly make it.
Which is why I blog about depression. Depression is nasty - it removes my deepest, strongest, most vital tool for dealing with pain - my laughter and my singing. Actually the less said about my singing the better. But my laughter, and my ability to make others laugh / groan / wince / gasp / blanche means I am alive, I am still me, and it enhances my ability to love and care for those around me. Depression is the fire blanket over the chip-pan; you don't want to set fire to the kitchen, but you still want those chips!
I'm not coping physically. I need help. I'm too ashamed to ask for it, and I'm not able, at the moment, to make the changes that will make asking for it possible. Why am I broadcasting this to the world and his wife? Because it helps to see it in black and white. To acknowledge that I'm human and weak. And to hope seeing it in black and white helps someone else.
After a month on fluoxetine, I traded for Sertraline, and things are much more evenly-keeled. I'm starting, very slowly, to overcome the insidious agoraphobia that creeps up when I'm not looking; the mood swings are back under control(ish); and I am starting to look at the next day in my diary. Don't want to overdo it; next week is far too scary to face.
I've been knitting, of course; and have almost finished a project I started a couple of weeks ago, and which is giving me a big kick because I think it's gorgeous.
I am desperately worried about members of my family that I care for very much. They are fighting stuff I can't begin to imagine. Some people liken living with pain to suffering with cancer, expressing the view that the former is worse than the latter, and I can tell you now, it is NOT a legitimate comparison.
I live with pain, it's my daily companion, physical and mental. I don't know what tomorrow will bring, or this afternoon, or even the next hour. I get friendly catcalls when I announce I'm off to bed at 7 in the evening - I don't care, it's a good laugh, and the joke's on me. But I know there will be a tomorrow, a this afternoon, a next hour. And yes, I know that it will probably be teeth-gritting. But it's life. And it's as full of laughter as I can possibly, humanly make it.
Which is why I blog about depression. Depression is nasty - it removes my deepest, strongest, most vital tool for dealing with pain - my laughter and my singing. Actually the less said about my singing the better. But my laughter, and my ability to make others laugh / groan / wince / gasp / blanche means I am alive, I am still me, and it enhances my ability to love and care for those around me. Depression is the fire blanket over the chip-pan; you don't want to set fire to the kitchen, but you still want those chips!
I'm not coping physically. I need help. I'm too ashamed to ask for it, and I'm not able, at the moment, to make the changes that will make asking for it possible. Why am I broadcasting this to the world and his wife? Because it helps to see it in black and white. To acknowledge that I'm human and weak. And to hope seeing it in black and white helps someone else.
Thursday, 16 August 2012
So it's time to introduce you to another very important person in my life. So far you've met me (poor you), Big Chief White Hair, and Young Master. The Queen of Cream presides over all of us.
I have a very, very special friend. She's 4 days younger than me, and a grandmother (I do like to rub that bit in). Her name is, let me think... Goddess Yelena.
Yelena moved away to Downunderland 16 years ago. We talk once, maybe twice, a year; sometimes not that frequently. We see each other on the Blue Page, which makes life easier given the time difference; but it's not the same as when we worked in the same office, would go home and then spend 2 hours a night chatting on the phone!
Anyway, the thing about Goddess Yelena is that not only is she very wise, beautiful, and the best of friends anyone could ask for; she's my very very best friend. I won't say she's everything I'm not; we are similar in many ways. She just completes me in a platonic, sisterly way. If I have a problem, she supplies the other half of the jigsaw; the other pair of eyes; the other way of thinking. We have that kind of relationship where we both understand each other, but also have the ability to think at right-angles to each other too.
We can't always be there for each other when we want to be. We can't always remember to take the phone with us when we're expecting a phone call that arrives when our head is stuck in the washing machine and we can't hear it ring (oh ok, that's just me!) It does break our collective heart to know that sometimes the other is in need and we are so far away (and yes, I can speak for both of us on that one).
I just want Goddess Yelena to know how much she is part of my life, and how much I think of her.
I have a very, very special friend. She's 4 days younger than me, and a grandmother (I do like to rub that bit in). Her name is, let me think... Goddess Yelena.
Yelena moved away to Downunderland 16 years ago. We talk once, maybe twice, a year; sometimes not that frequently. We see each other on the Blue Page, which makes life easier given the time difference; but it's not the same as when we worked in the same office, would go home and then spend 2 hours a night chatting on the phone!
Anyway, the thing about Goddess Yelena is that not only is she very wise, beautiful, and the best of friends anyone could ask for; she's my very very best friend. I won't say she's everything I'm not; we are similar in many ways. She just completes me in a platonic, sisterly way. If I have a problem, she supplies the other half of the jigsaw; the other pair of eyes; the other way of thinking. We have that kind of relationship where we both understand each other, but also have the ability to think at right-angles to each other too.
We can't always be there for each other when we want to be. We can't always remember to take the phone with us when we're expecting a phone call that arrives when our head is stuck in the washing machine and we can't hear it ring (oh ok, that's just me!) It does break our collective heart to know that sometimes the other is in need and we are so far away (and yes, I can speak for both of us on that one).
I just want Goddess Yelena to know how much she is part of my life, and how much I think of her.
Friday, 10 August 2012
Prozac
I was once accused of being a neurotic, middle-aged woman on Prozac.
I wasn't, at the time. I am now.
I'm quite nervous about taking these tablets. Until now I've been able to take charge of my own head, eventually. But the time has come to accept that I need extra help. The mirena coil has affected me differently this time, and as I told my GP yesterday, I now have two volumes - calm and psychotic.
My skewed thinking has taken on a whole new dimension. I realise that that nasty woman is back inside my head, pecking away with her "maybe you're just turning into an embittered old woman. Maybe you're just not as nice as you want to be". I'm gagging her, but not very successfully.
I've had a lot of help and support from other anti-depressant users. I know to expect the woolly head and spaced-out feelings that I've had from painkillers, for example. I hope I'll adjust quickly, and I'll get to the bit where I feel better.
It's scary, but it's not failure. It's just the next phase of being me.
I wasn't, at the time. I am now.
I'm quite nervous about taking these tablets. Until now I've been able to take charge of my own head, eventually. But the time has come to accept that I need extra help. The mirena coil has affected me differently this time, and as I told my GP yesterday, I now have two volumes - calm and psychotic.
My skewed thinking has taken on a whole new dimension. I realise that that nasty woman is back inside my head, pecking away with her "maybe you're just turning into an embittered old woman. Maybe you're just not as nice as you want to be". I'm gagging her, but not very successfully.
I've had a lot of help and support from other anti-depressant users. I know to expect the woolly head and spaced-out feelings that I've had from painkillers, for example. I hope I'll adjust quickly, and I'll get to the bit where I feel better.
It's scary, but it's not failure. It's just the next phase of being me.
Thursday, 26 July 2012
Wednesday, 4 July 2012
Philosockiphal
Yes it's been 2 months since my last post, and yes I've been steadily knitting one sock in all that time. That includes completely or partially frogging about a dozen times.
It's amazing how much punishment Opal yarns take - I love them.
It's only the first of the pair to be completed, and I haven't even sewn in the ends yet, so it's only 99.9% finished. Suddenly this sock symbolises stuff.
I've been depressed again for a few months now. Lots of reasons why. At first I didn't want to believe it - I beat it last year, didn't I, I had Plans and Actions to stop it happening again - but still it came. I've spent a fair few days in tears for "no" reason (but there's always a reason if I just dig deep enough), and I've sought help again.
This time there is no massive revelation, no eureka moment, just gentle reminders of ideas that have lapsed. Apparently this is a lapse, not a relapse - or is it the other way around? Either way, every day there is a fight. The wrestle with the idea of opening the front door. The tug of doing nothing versus the cleaning, clearing, clutterbusting. The comfort in defeat that is solitude.
Sometimes the prefab ideas don't work. The recipes don't come out right. The instruction manual doesn't contain the right troubleshooting. That's when I realise I am finding my own way, and that thought gives me strength. I'm not always going to knit the perfect sock straight off, I'm going to have to tweak patterns I've read, until I can say with some certainty that so many alterations have been made that I've actually designed my own sock. Knitting knoweth not plagiarism!
Knitting designs are born of trial and error and imagination and all the patterns that have been created before. And that's what's happening in my head. I'm making up a few new rules to tackle a different year's depression based upon the old rules from the old year. So far there's been lots of unravelling and unwinding and starting all over again. No matter. The knit and purl of my depression is pretending - going through the motions, feeling the odd twinge of a glow that tells me this won't be forever.
I'll be unravelling a million knitted objects in my life. I feel that depression will be a lifelong fight. Until the socks stand up and start to unravel me, depression won't win. It won't beat me.
I decided to try knitting a toe-up sock for the first time. The first
three attempts were huge. The next two were tiny. Then I didn't like
the leg length. Then I couldn't get the frilly edging pattern to work. Then I decided to do it my way - and at last it worked. Here's the photo.
It's only the first of the pair to be completed, and I haven't even sewn in the ends yet, so it's only 99.9% finished. Suddenly this sock symbolises stuff.
I've been depressed again for a few months now. Lots of reasons why. At first I didn't want to believe it - I beat it last year, didn't I, I had Plans and Actions to stop it happening again - but still it came. I've spent a fair few days in tears for "no" reason (but there's always a reason if I just dig deep enough), and I've sought help again.
This time there is no massive revelation, no eureka moment, just gentle reminders of ideas that have lapsed. Apparently this is a lapse, not a relapse - or is it the other way around? Either way, every day there is a fight. The wrestle with the idea of opening the front door. The tug of doing nothing versus the cleaning, clearing, clutterbusting. The comfort in defeat that is solitude.
Sometimes the prefab ideas don't work. The recipes don't come out right. The instruction manual doesn't contain the right troubleshooting. That's when I realise I am finding my own way, and that thought gives me strength. I'm not always going to knit the perfect sock straight off, I'm going to have to tweak patterns I've read, until I can say with some certainty that so many alterations have been made that I've actually designed my own sock. Knitting knoweth not plagiarism!
Knitting designs are born of trial and error and imagination and all the patterns that have been created before. And that's what's happening in my head. I'm making up a few new rules to tackle a different year's depression based upon the old rules from the old year. So far there's been lots of unravelling and unwinding and starting all over again. No matter. The knit and purl of my depression is pretending - going through the motions, feeling the odd twinge of a glow that tells me this won't be forever.
I'll be unravelling a million knitted objects in my life. I feel that depression will be a lifelong fight. Until the socks stand up and start to unravel me, depression won't win. It won't beat me.
Monday, 7 May 2012
So...
No I haven't started The Bag yet. I did finish The Hat, but haven't blocked it yet, and it will need blocking if it's going to fit me! I've decided to do an unmatching set, if the yarn holds out. Flowers and leaves. One sock has almost beaten me, but not for long. Pics will follow. Eventually.
And in other news, Young Master has been off on jolly jaunts this weekend. He's growing up. Hopefully he's bringing me back some scheissenfleissen.
And in other news, Young Master has been off on jolly jaunts this weekend. He's growing up. Hopefully he's bringing me back some scheissenfleissen.
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