Spartacus Stories

Here is a collection of Stories written by many different disabled people about the impact that DLA has on their lives. It also includes stories of fear about the proposed changes to personal independence payment.

Admin: benefitscroungingscum, Lucia and Lucy
to add your story email us at spartacusstories @ g mail . com (without the spaces) (your posts are there, just being scheduled throughout the day) (can you add how you want your 'name' to appear ta)

Monday, 16 January 2012

The Day That Changed My Life #spartacusstories #spartacusreport

Good day dear readers and a happy new year to you. Today sees a little departure from my usual rantings as it is the first day of One Month Before Heartbreak blog blast. This has been organised by the campaign group, The Broken of Britain who are raising awareness of the disproportionate affect the government cut backs are having on the disabled people all over the UK. One Month Before Heartbreak derives from the closure of the government consultation paper on reform of Disability Living Allowance on the 14th February, you can find their details at In support of this campaign I have chosen to delve a little more personally than I usually do and tell you about the day that changed my life, Wednesday 4th March 2009, the day I became disabled and hopefully this will highlight how anyone, and I really do mean anyone, can only be moments away from becoming disabled.
The day started off slightly differently the normal. I wasn't in the office that morning as I was travelling to a training course and it was easier to get to the train station from home than it was from my place of work, however I was delighted to be back in the swing of things as I had been off work for two weeks with an inner ear infection, that had given me dizzy spells and headaches, but after a dose of strong antibiotics I was well enough to take on the world with my usual vigour.
With my wife and nine month old daughter downstairs, I entered the spare bedroom that had been changed into an office and logged onto the computer to have an online meeting with one of the music leaders that I worked with. As a volunteer manager for a charity that provides musical opportunities for people with disabilities, I worked with a number of extremely gifted musicians, but I also knew what they had in talent, they usually liked in organisation and they detested paperwork and record keeping of music sessions and, true to form, he was late online so the meeting was somewhat truncated, but despite this, I knew I could rely on him to do what was required, and do it well.
After the meeting, I didn’t have time to log off and just rushed downstairs kissed my wife and daughter goodbye and went to catch the bus for the train station. No sooner had I arrived at the stop than the bus arrived, likewise as I arrived on the platform just as the train was pulling in, and I couldn’t have timed things better.
For many various reasons the training afternoon proved to be a bit of a non-event that I won't bore you with so we will jump on a few hours here.
I arrived home and spent some time with my baby girl before she went to bed at 7pm. While I got her ready for bed and laid her down for the night, my wife set about making the evening meal, it was a lamb cutlet with mash potato and veg. It was lovely and I complemented her on the quality of the meal; I then set the laptop on my knee to check emails and to make notes on a paper I was working on, on communication difficulties and people with complex disabilities. My wife went upstairs for a bath. The exact timing of the next hours events are somewhat hazy, I remember having a stinking headache, nothing unusual as I’d had those with the ear infection I had just got over, but there was something else, I felt very unusual when I touched my head at the site of the pain. I put my hand on the arm of the chair to stand up, but things didn’t feel right. For whatever reason, I decided to head upstairs, about a third of the way up the stairs, I finally realised what didn’t feel right, ‘feel’ being the operative word. I saw the handrail in my hand and realised I couldn’t feel it. Something was wrong, badly wrong. I continued up the stairs to be met by my wife at the bathroom door. She said something to me that I just wasn’t able to take in. ‘I’ve got a problem’ I said to her, trying to hide my own worry, ‘I’ve got no feeling in my arm’, I continued. Halfway through that sentence my speech began to slur. My wife noticed this too and remarked as much. I thought back to when I was a student nurse and had written a paper on strokes, this married with the FAST campaign running on the television at the time, I knew what was happening to me. ‘You’d better call an ambulance; I think I’m having a stroke’ I said to my wife, who acted immediately. Somehow, I found himself sitting on the bed in our bedroom, while my wife was on the phone in the office I stood up and walked, I did this for two reasons, one: to see if I could walk and, two: to have a look at my face in the mirror hanging on the bedroom wall. I could walk and when I got to the mirror I didn’t notice whether my face had dropped down one side.
When my wife came back into the bedroom, I sat back on the bed and asked for a pen and paper to write down phone numbers of people whom I was due to see the following day. Soon after, the doorbell rang and my wife went to let the paramedic in.
The woman in uniform entered the bedroom; she was the rapid response person, the person who does the first patient assessment before the ambulance comes. She asked various questions and carried out various tests on me, for instance, lifting his arms above my head, squeezing hands etc. The woman didn’t seem to be convinced I was having a stroke, and vocalised these doubts to the paramedic who arrived a few minutes later with the ambulance. Despite this I was sure of what was happening to me.
The ambulance driver asked me if I thought I would be able to walk downstairs and into the ambulance, I thought I would and carefully did so, at the front door I kissed my wife goodbye and headed down the garden path to the ambulance. Once inside, I was laid down on the trolley and immediately put on oxygen. Despite this, once in the ambulance, the full effects of the stroke began. I told the paramedic that I felt the need to close my eyes and go to sleep, but didn’t think that I should: the paramedic agreed and engaged me in a small talk conversation to keep me alert until we arrived at the hospital, it was obvious at this point that although I had walked into the ambulance, I would not be able to walk out of it and into the hospital. At this point, I was struck with the fear of what was happening and what person would I be after it, would I even survive it?
I was wheeled into a cubicle and the paramedic bid me farewell and good luck. I was left alone for a while and he contemplated my fate. My first thoughts were of my baby daughter, would I ever see her again, would the time an hour or so earlier when I’d put her to bed be the last time? If I’d have known it could be I would have made it last that little bit longer. Then I thought of my wife, it would be our second wedding anniversary in a mere two weeks time. I had surprise plans to take her to the city of Bath for a spa day and meal. Then I thought of the people who worked for me and who were relying on me.
The pain in my head that had begun this whole sorry event intensified, it was just about bearable but the pressure building within my head above my left eye socket was a horrible feeling. I was thinking about the possibility of my death: after all my father died at the age I am now, and my mother died in her fifties, was I destined to die young just as I had got my life together with a wife I adored and the daughter I had long wished for? I hadn’t had them long: life seemed so unfair.
My thoughts were interrupted by a nurse entering the cubicle to take my blood pressure and temperature, and seconds after a doctor came in and asked the same questions I’d been asked previously by the paramedics. It all began to be a bit too much. The staff were being nice and everything, but what the hell was happening? I mean, I knew what was happening, but why was it happening? I have never smoked, I gave up drinking some five years ago, I didn’t have high blood pressure or cholesterol that I knew of and I was thirty seven years old: hardly a prime candidate for a stroke.
The doctor did a few sensory checks seeing if I could see normally and whether I could feel touch and then produced a reflex mallet from somewhere and started hitting my arms and legs in various places. After looking ponderous for a while, he semi-confirmed my initial thoughts: I’d had a stroke. The only way to confirm it without doubt would be to have an MRI scan, which I would have tomorrow. I wasn’t told that I would be admitted as an inpatient, I sort of just assumed that I would, but to hear the confirmation in that manner I thought lacked a little tact. I was told I was going onto the ‘Acute Assessment Unit’, and they were just waiting for a bed to be ready for me. From there, a decision would be made on what would happen; whether I would go to the stroke unit at this hospital or whether I would be transferred to The John Radcliffe Hospital in nearby Oxford. I asked if somebody could call my wife, I knew she would be worried. I was handed a cordless phone and told to just hand it back when I was done. Easier said than done when your speech is slurred and you can’t get up from the hospital trolley you’re lying on. I looked on the phone’s display and saw it was 11 o’clock, carefully dialling the number; I planned what I was going to say. Although when it was happening I said I thought I was having a stroke, now phoning her to confirm that I had was a different matter. She answered the phone sounding tearful. I can’t remember the exact details of the conversation, but I told her what the doctor had told me and where I would be going and what was going to be happening. I remember suggesting that she contact her Mum and let her know what had happened, and my sister. I think she said that she had already phoned her Mum who was waiting for an update and would phone my sister straight away. I told her I loved her and to give our little girl a hug from me in the morning. She said she would and we both shed a few tears, unusual for me, especially in public but I never thought I would be spending the night apart from them, or of course, when I would spend the night in the same house as them again. I hung up; I wanted her to sleep, knowing her so well though: I knew she was unlikely to, wasn’t too sure if I would for that matter.
I laid back and sighed. There was a part of me that wanted my wife here with me; there was another part that didn’t want her to see me like this. My headache was getting worse; it felt like somebody was trying to squeeze my brain out through my eye socket. Of all the headaches I had had ever, this was easily the most intense. I asked for some painkillers when the nurse came to get the phone from me and she said she would check. Sometime later she returned and said I would be given some painkillers when the doctor assessed me when I went to the ward. It was disappointing as I don’t ask for stuff like that unless I really need it, but I could understand that giving me medication now could affect what the doctor on the ward decides. I tried to relax and I lost all concept of time, when they came to take me to the ward I had no idea what the time was, or whether I had managed to get any sleep, but I was glad to get out of casualty, but I had no concept of where I was and the route I had taken as I couldn’t keep my eyes open for too long because of the headache. I arrived on the unit and it was darker so was able to keep my eyes open that little bit longer. I was wheeled into a side room where a male nurse welcomed me onto the unit. I asked him for painkillers and was told I could have some after I’d seen the doctor on the unit. He began to ask me some questions, checking my personal details and stuff like that, it was really annoying me now. How many times did I need to answer the same questions? And I’m in considerable pain here. I closed my eyes and went through it again. I could hear the turning of pages, it sounded like there was a dossier of questions he needed to go through with me. I went onto autopilot, stopped listening really, I knew the answers to these questions and could just give the stock answers. I was pulled back to reality with the news that I was going to be moved from the side room into the main ward where I would be seen by the doctor. Great I thought; one step nearer those blooming painkillers. I was wheeled away, again with my eyes closed. My bed stopped, manoeuvred slightly and then was told the doctor would be there soon. To my amazement she was too. She introduced herself, but I didn’t catch her name as her next sentence immediately grabbed my attention and endeared her to me for all eternity, ‘can I get you any pain relief?’ I told her about my ever increasing headache, and she asked me to describe it, so I told her, ‘it feels like someone is trying to squash my brain out through my eye socket’. She told me she would get the nurse to sort out some codeine for me, that was music to my ears, she left the cubicle for a brief period leaving me feel relieved that somebody was actually going to help me deal with the symptoms rather than asking me questions over and over again. On her return she endeared herself to me further by apologising that she was going to ask me questions, some of which I’d been asked several times already tonight. I was at least grateful for the acknowledgement. She asked me if I knew what the date was, I said I knew but I didn’t know if we had past midnight or not as I had no concept of time. I was surprised to hear it was about 3am. I told her it was the 5th March 2009. She then asked me if I knew what her job was, I said she was a registrar, which she seemed to find amusing, she told me she was a doctor but definitely not a registrar. That will teach me for getting over-confident. The questions continued onwards, the she left again for a brief period to chase up my painkillers. When she returned she had a small glass of water and a teaspoon. She told me my pain relief was on the way but in the meantime she was going to test my swallow reflex, I would be given three teaspoons of water and if I didn’t manage to swallow them I would be put on a soft or puree diet. I was hoping and praying that I would pass this test. I love my food, possibly a little too much admittedly. I got the first one in my mouth and nervously swallowed. To my immense relief it went down without a choke. The second and third followed the first and I’d passed. I had never been so happy to swallow a tiny amount of water in my entire life. The questions continued, still no painkillers. She apologised and left again to go and chase up my painkillers. I didn’t care now, I knew I would still be able to eat properly constituted food and that was a great feeling.
The doctor came back in and told me she had completed her questions and wished me well, behind her, the nurse with my painkillers came in and nearly walked straight into her, but boy was I pleased to see him and those little white tablets. I eagerly swallowed them and closed my eyes, and that is all I remember of those first hours during and after my stroke.

 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011

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