After I got MS I thought I could just go back to work, like nothing happened. I was fine! Well as my mum would say
"you know what thought did?"
I had a great career stewarding at football matches, OK not something that challenged my brain greatly but a job I loved and took very seriously all the same. I remembered the haunting images from my younger days as an armchair wrestling, football fan. Other girls got up early to watch Tiswas or Going live on a Saturday morning, I stayed in bed until it was time to watch Saint and Greavsy,Dickie Davis and of course Big Daddy and Giant Haystacks squaring up to each other! I loved my job at Brockville it was when I stopped being a football fan and worked to make sure other fans were safe. I read the Taylor and Popplewell reports. A bit much for a job were I was paid just £15 quid a shift! I didn't have to but I have this thing about knowing everything about anything I do.
I was haunted by Friday night nightmares about Crushes and the wooden stand I used to sit in burning. Knowing that there was only a 4 minute window where they had to stop the Bradford City Stadium fire is what kept my arse glued to that seat in the library studying what mistakes had been made before but never learned from. I have many distinct memories of those Saturdays sitting in front of the box watching the footie while waiting for those magic 8 score draws that were going to change all our lives. Two of the worst of those memories are watching that stand at Brafford burning and the people running around the pitch while on fire. The other was screaming "let them fucking out" as caged football fans were squashed against that blue fence. It was one of the few times I swore infront of my dad and escaped a clip around the ear!
I used to have a really good time working at the Falkirk FC stadium at Hope street and found I could joke with all my teams opponents on the day but at the end of the day I was in charge of my section and I soon learned how to make 100 men to do exactly what I said! I didn't leave them in any doubt that their lives could depend on it.
I admit it took some great mental discipline not to turn around when I knew the Bairns were coming up on goal but I did it. I wore a massive yellow jacket over the top of my shirt and a tie that I had borowed from dad. I worked for 6 years at that job. When I didn't trust my eyes anymore though I knew that I had to give it up.
After the stewarding came car cleaning. I wasn't as good at that but I always gave the job my best. I did try selling Ann Summers for a bit but selling naughty knickers and vibrators although great fun really only makes money if you can drive.
My next job was on the checkouts at Tescos and they were a great employer and very disability aware, they made reasonable allowances for the MS but in the end after just a couple of years I had to retire on medical grounds. Which meant I could get my pension paid out in full and keep my discount card, retired at 28 what can I say? my dad always told me I would retire young, though I suspect he thought it would be when I had made my first million! I never planned on not having qualifications. Oh I had definite plans, as an 11 year old! I wanted to be a vet but then I found out I might have to shoot horses so I put that idea down. Then I considered Politics, Law and Journalism. I used to go quite often to my local councillors house after school and keep him on his doorstep debating all manner of issues, usually while his dinner got cold! I liked him.The late Mr Ian Davidson a labour councillor who had a keen intellect and really beautiful handwriting. He also had the patience of a saint when it came to the 12 year old who wanted to save the whales, stop animal testing and to ban the bomb! I can't help thinking that he would be spinning in his grave if he could see what the party he gave his life to had turned into today. He granted my request to show me and my entire modern studies class around our local councils chambers. A trip I thoroughly enjoyed and although it made me very popular with the modern studies teacher Mr Williams I can't say that the rest of the class was all that thriled with me but thats another blog entirely!
Councillor Davidson gave me a piece of advice I have never forgotten, He said " Cath I might not agree with you, I might not like what you have to say but as your duly elected local goverment official I damn well have to listen to it!"
Tuesday 21 April 2009
Monday 20 April 2009
You have Pain, Where is your Shame? MS from Scotland!
As much as I have learned and grown in the last fourteen years, it still stuns me sometimes just how little those that are paid to understand and defend the Disability issues that are of special interest to myself and my family, frequently fail to learn or grow!
I dont suppose it should come as a shock after all these years because I was once just the same as the people that I am often so scathing in my numerous verbal onslaughts.
I represent everything they secretly fear. A person who used to be 'normal' just like them. Who went to work one day and came home half blind. Was I in an accident? Was I attacked? Well in a way, I suppose you could describe it as an attack and my own body was the assailant.
I sometimes try to imagine what I must have looked like sitting there in that hospital room that September Sunday all those years ago, wondering why the hell I could only see in black, white and grey. I must admit that if I really could go back and observe that happy go lucky, newly wed with so much going for her, that the person I am now would judge the person I was then as weak, a pathetic figure, who was an arrogant and ignorant figure. She sat there so worried sick with fear and terrified by what she couldn't possibly have understood. As the still nameless attacker changed its tactics and reduced her sight to only a negative! Remember back to the days before the digital doors were flung wide, you could look at the negatives of yourself. The parties, the friends, the pictures of some of the happiest and carefree days of your life!
It is not as much fun when you are not holding a strip of film up to the light to isolate a memory or moment forever caught in time. When you no longer see the light because it has turned dark and the only clue to tell you it is a light you are looking at is the halo of light that surrounds the darklight. If you could only see the world in negative shades of grey, do you think it would be as wonderous?
It did not matter in the end because just 3 hours later that day the mystery turned the negatives off and turned on the darkness.
They tested my eye with all the tests and instruments they had but my eye was fine, perfect in every way, yet my pupil could no longer react to light. I was sent home by the young, inexperienced, I suppose trainee opthamologist, with his last words to me ringing in my ears "There is nothing wrong with your eye. There must be something wrong in your brain!" Perhaps not the best thing to say to a young and inexperienced mother and bride whose much loved grandmother had missed her wedding day by just six weeks a few months earlier that year. The something that had been wrong in her brain had turned out to be an attacker just as evil in its nature as the mystery that had brought the darkness to me and there was nothing they could do about the multiple malignent tumours they had found. Gran was supposed to have just a few months but even bringing our wedding forward by six months we couldn't beat the cancer. She passed peacefully at home just three weeks after we had rearranged the day so she could be at one of the happiest days of my life. A day that was predestined to be tinged with sadness and grief because of 'something' in the brain! So it is of little suprise that I had self diagnosed myself as having an evil brain tumour and my theory seemed to hold up well, when a couple of days later my left arm and leg went weak. Which was a major pain as my husband was in hospital himself that day having a pre booked major surgery, After which he was supposed to be on bed rest
The day after his operation was when my limbs also became painful and numb at the same time. Which is a concept that many find difficult to accept and it is difficult to articulate it. The only way I can think to descibe it would be to liken it to those times you would sit kneeling on your legs too long as a child to listen to an exciting story or watch your favourite cartoon and when you finally did stand up your legs were numb but you start to have that painful pins and needles sensation that arrives as the blood rushes back into your lower legs and feet.
Then eight days after the eye tests and start of the darkness a medical secretary was sitting at her desk typing up medical discharge letters to be sent to patients General Practioners. She thought it a bit strange that when she opened my file there was nothing to type and no appointments or refferals to make. She asked the Senior Consultant what she should type and thats when the phonecalls began. First he phoned my doctor and he then phoned me telling me I had to go back to the hospital which wasn't even in my hometown right away. As any mother with two young kids, one at nursery and one in their first year at primary school will know that it isn't aways easy to just drop everything at the behest of a phonecall.
I had no one to collect the girls from school. I couldn't do it and my husband who had talked his surgeon into letting him come home on the understanding his recovery would be six weeks of bedrest with only trips to the bathroom allowed. Strange recovery orders I know but if I described in detail exactly what his surgery had entailed any man reading this would visibly wince and cross their legs in terror! Most women think that a man could never understand the pain of childbirth. I however am married to a man who endured more pain than I ever did giving birth to our sons. Two beautiful and amazing boys whose births would never have been possible if it hadn't been for a brilliant surgeon, who agreed to attempt a vasectomy reversal at the same time as he was doing a much more difficult and major operation my husband needed.
The neighbour who dropped the girls off at school that morning could not collect them because of a family emergency of her own. So I had a doctor phoning every half an hour telling me to get to hospital, a school worried about who would pick up two young girls and then the consultants secretary joined in. Explaining a mistake had been made and I should have been admitted the previous Sunday and I needed to come in. In desperation I phoned the Social Services and asked for help. The sent a duty worker to the house, she was there when my GP phoned again. We explained the surgeons orders to my husband. "Can your parents get them?" she asked. I explained that they could not because both my parents had serious health problems of their own my dad was registered disabled and was cared for by my mum who herself had just started to notice problems with her knee. Though it took many more years before she was diagnosed with the arthritis that cripples her today. She only has another ten years to wait and she will be old enough for the complete knee replacement she so desperately needs. So this social worker said she would organise someone to pick the girls up. Why is all this relevant to my story you ask? Well I did eventually agree to go into hospital after I was assured that the girls would be fine and picked up and taken to and from school for the duration of the treatment I needed, which was three days of IV steroids. The reason for my blindness was a condition called Retrobulbaropticalnueritis. Which is simply the term they use to explain a swelling of the optic nerve behind the eye itself. So off I went and after the same young doctor that had discharged me the previous week had harpooned just about every vein in both hands, wrists and arms before he sent for an anesthetist who finally got a vein that didn't collapse using a needle that he had to send to Paediatrics for I started my steroids. I had no visitors that night or the next day but my sight had started to return on the second day. As the ward had opened for everyone elses visitors there appeared three familar faces my two girls and my hubby!
I was furious at my husband for taking the risk of bursting his stitches by disobeying his surgeons orders and walking about. Which was when I found out that thirty minutes after the ambulance had left to take me to hospital, the social worker had knocked on my parents door and told them they would have to pick up the girls from school. My parents explained to her why they couldn't but she pointed to the car that was parked in their front garden and said they had a car so they had to. If she had given them even a minute before she about turned and got into her own car and drove off they could perhaps have explained that the reason my dads old clapped in Maestro car was in the garden was because its brakes had failed the MOT just 3 weeks before then and not having the cash to get it fixed right away my dad had cancelled the insurance on the car and not renewed the road tax!
My dad left his house at 1.50pm and walked the mile to the school and only just arrived at the school before the bell at 3.15pm. He couldn't do it the second day and that is why my husband got out of his bed and did it himself and brought the girls through to the hospital to visit me that night. I discharged myself from the hospital Against Medical Advice and with a ten day course of oral steroids. My vision never returned completely to what it was before, Colours had changed and it was still blurred. If I closed my right eye and looked at a piece of white paper on a light coloured wall the paper would just disapear. Reds became pink, yellow became cream and blues were apple green. Something I didn't understand for many years was how I could see a friend walking towards me when they were some distance away but then the next moment they would be right infront of me. It is something to do with how eyes and brains work normally.
Two eyes see two slightly different views of the same thing but our brains, those wonderful and fascinatingly clever organic circuit boards for the machine that is the human body, blends the two seperate images together to form what we actually see. However when two eyes, see two seperate pictures that are vastly different from each other the brain sometimes disregards one image all together. Which is where your brain plays tricks, it sometimes disregards the wrong image which is why someone you didn't see suddenly appears. Or someone you did see just a moment before vanishes. It was very strange at first but I have got used to it and I think with time the brain learns new ways of dealing with the information my eyes sends it. The only time it is a worry is when I am crossing a road!
I will never know if the reason for damage to my sight that remained after that first attack was because of the delay of a week in starting the IV treatment or because I stopped the treatment a day early.
One thing I do know for sure is that was to be the first time of many that the Social Services department would let us down!
I dont suppose it should come as a shock after all these years because I was once just the same as the people that I am often so scathing in my numerous verbal onslaughts.
I represent everything they secretly fear. A person who used to be 'normal' just like them. Who went to work one day and came home half blind. Was I in an accident? Was I attacked? Well in a way, I suppose you could describe it as an attack and my own body was the assailant.
I sometimes try to imagine what I must have looked like sitting there in that hospital room that September Sunday all those years ago, wondering why the hell I could only see in black, white and grey. I must admit that if I really could go back and observe that happy go lucky, newly wed with so much going for her, that the person I am now would judge the person I was then as weak, a pathetic figure, who was an arrogant and ignorant figure. She sat there so worried sick with fear and terrified by what she couldn't possibly have understood. As the still nameless attacker changed its tactics and reduced her sight to only a negative! Remember back to the days before the digital doors were flung wide, you could look at the negatives of yourself. The parties, the friends, the pictures of some of the happiest and carefree days of your life!
It is not as much fun when you are not holding a strip of film up to the light to isolate a memory or moment forever caught in time. When you no longer see the light because it has turned dark and the only clue to tell you it is a light you are looking at is the halo of light that surrounds the darklight. If you could only see the world in negative shades of grey, do you think it would be as wonderous?
It did not matter in the end because just 3 hours later that day the mystery turned the negatives off and turned on the darkness.
They tested my eye with all the tests and instruments they had but my eye was fine, perfect in every way, yet my pupil could no longer react to light. I was sent home by the young, inexperienced, I suppose trainee opthamologist, with his last words to me ringing in my ears "There is nothing wrong with your eye. There must be something wrong in your brain!" Perhaps not the best thing to say to a young and inexperienced mother and bride whose much loved grandmother had missed her wedding day by just six weeks a few months earlier that year. The something that had been wrong in her brain had turned out to be an attacker just as evil in its nature as the mystery that had brought the darkness to me and there was nothing they could do about the multiple malignent tumours they had found. Gran was supposed to have just a few months but even bringing our wedding forward by six months we couldn't beat the cancer. She passed peacefully at home just three weeks after we had rearranged the day so she could be at one of the happiest days of my life. A day that was predestined to be tinged with sadness and grief because of 'something' in the brain! So it is of little suprise that I had self diagnosed myself as having an evil brain tumour and my theory seemed to hold up well, when a couple of days later my left arm and leg went weak. Which was a major pain as my husband was in hospital himself that day having a pre booked major surgery, After which he was supposed to be on bed rest
The day after his operation was when my limbs also became painful and numb at the same time. Which is a concept that many find difficult to accept and it is difficult to articulate it. The only way I can think to descibe it would be to liken it to those times you would sit kneeling on your legs too long as a child to listen to an exciting story or watch your favourite cartoon and when you finally did stand up your legs were numb but you start to have that painful pins and needles sensation that arrives as the blood rushes back into your lower legs and feet.
Then eight days after the eye tests and start of the darkness a medical secretary was sitting at her desk typing up medical discharge letters to be sent to patients General Practioners. She thought it a bit strange that when she opened my file there was nothing to type and no appointments or refferals to make. She asked the Senior Consultant what she should type and thats when the phonecalls began. First he phoned my doctor and he then phoned me telling me I had to go back to the hospital which wasn't even in my hometown right away. As any mother with two young kids, one at nursery and one in their first year at primary school will know that it isn't aways easy to just drop everything at the behest of a phonecall.
I had no one to collect the girls from school. I couldn't do it and my husband who had talked his surgeon into letting him come home on the understanding his recovery would be six weeks of bedrest with only trips to the bathroom allowed. Strange recovery orders I know but if I described in detail exactly what his surgery had entailed any man reading this would visibly wince and cross their legs in terror! Most women think that a man could never understand the pain of childbirth. I however am married to a man who endured more pain than I ever did giving birth to our sons. Two beautiful and amazing boys whose births would never have been possible if it hadn't been for a brilliant surgeon, who agreed to attempt a vasectomy reversal at the same time as he was doing a much more difficult and major operation my husband needed.
The neighbour who dropped the girls off at school that morning could not collect them because of a family emergency of her own. So I had a doctor phoning every half an hour telling me to get to hospital, a school worried about who would pick up two young girls and then the consultants secretary joined in. Explaining a mistake had been made and I should have been admitted the previous Sunday and I needed to come in. In desperation I phoned the Social Services and asked for help. The sent a duty worker to the house, she was there when my GP phoned again. We explained the surgeons orders to my husband. "Can your parents get them?" she asked. I explained that they could not because both my parents had serious health problems of their own my dad was registered disabled and was cared for by my mum who herself had just started to notice problems with her knee. Though it took many more years before she was diagnosed with the arthritis that cripples her today. She only has another ten years to wait and she will be old enough for the complete knee replacement she so desperately needs. So this social worker said she would organise someone to pick the girls up. Why is all this relevant to my story you ask? Well I did eventually agree to go into hospital after I was assured that the girls would be fine and picked up and taken to and from school for the duration of the treatment I needed, which was three days of IV steroids. The reason for my blindness was a condition called Retrobulbaropticalnueritis. Which is simply the term they use to explain a swelling of the optic nerve behind the eye itself. So off I went and after the same young doctor that had discharged me the previous week had harpooned just about every vein in both hands, wrists and arms before he sent for an anesthetist who finally got a vein that didn't collapse using a needle that he had to send to Paediatrics for I started my steroids. I had no visitors that night or the next day but my sight had started to return on the second day. As the ward had opened for everyone elses visitors there appeared three familar faces my two girls and my hubby!
I was furious at my husband for taking the risk of bursting his stitches by disobeying his surgeons orders and walking about. Which was when I found out that thirty minutes after the ambulance had left to take me to hospital, the social worker had knocked on my parents door and told them they would have to pick up the girls from school. My parents explained to her why they couldn't but she pointed to the car that was parked in their front garden and said they had a car so they had to. If she had given them even a minute before she about turned and got into her own car and drove off they could perhaps have explained that the reason my dads old clapped in Maestro car was in the garden was because its brakes had failed the MOT just 3 weeks before then and not having the cash to get it fixed right away my dad had cancelled the insurance on the car and not renewed the road tax!
My dad left his house at 1.50pm and walked the mile to the school and only just arrived at the school before the bell at 3.15pm. He couldn't do it the second day and that is why my husband got out of his bed and did it himself and brought the girls through to the hospital to visit me that night. I discharged myself from the hospital Against Medical Advice and with a ten day course of oral steroids. My vision never returned completely to what it was before, Colours had changed and it was still blurred. If I closed my right eye and looked at a piece of white paper on a light coloured wall the paper would just disapear. Reds became pink, yellow became cream and blues were apple green. Something I didn't understand for many years was how I could see a friend walking towards me when they were some distance away but then the next moment they would be right infront of me. It is something to do with how eyes and brains work normally.
Two eyes see two slightly different views of the same thing but our brains, those wonderful and fascinatingly clever organic circuit boards for the machine that is the human body, blends the two seperate images together to form what we actually see. However when two eyes, see two seperate pictures that are vastly different from each other the brain sometimes disregards one image all together. Which is where your brain plays tricks, it sometimes disregards the wrong image which is why someone you didn't see suddenly appears. Or someone you did see just a moment before vanishes. It was very strange at first but I have got used to it and I think with time the brain learns new ways of dealing with the information my eyes sends it. The only time it is a worry is when I am crossing a road!
I will never know if the reason for damage to my sight that remained after that first attack was because of the delay of a week in starting the IV treatment or because I stopped the treatment a day early.
One thing I do know for sure is that was to be the first time of many that the Social Services department would let us down!
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