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.
Sunday, 30 December 2012
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.
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