My Stroke Story – Kelvin – 54 years young
(REMEMBER THOSE DREAMS YOU HAD – DON’T LET THE STROKE DESTROY THEM – THERE IS A FULFILLING LIFE POST STROKE). Hospitalised 2/10/07
I cannot put a specific date on when my stroke started as I had been suffering from hundreds of small bleeds for many months, unknown to me.
I was a football referee and had been for around 15 years and ran my own publishing and translations business.
The last and most severe one started in the departure lounge at Faro Airport, Portugal on a Sunday lunchtime. My wife, Sue and I had spent a week in a Villa in Portugal with the family. We had just checked our bags through as we were on a different flight back to the UK than Sue’s family.
Before the week in Portugal my wife and I spent time in Spain and Gibraltar. Whilst in Spain I missed the turn off back to our hotel and went a different way back on five occasions and blamed the map and lack of roadside directions. How wrong could I have been! My vision was being affected by something and I did not know what. I must have lost my temper so many times in Spain at my wife for failing to listen to my directions properly – or so I thought. The confusion and my inability to give proper directions continued in Gibraltar. I was doing things so much out of character and I did not know why. The small bleeds had started, unknown to me.
At the airport in Portugal for the return flight to Leeds, I told Sue that I was going to get a brandy before the flight was called and went on the escalator to the balcony bar and had just the one brandy.
On the way back down the escalator to re-join Sue I noticed the escalator felt strange and was not working how I expected it would. At the bottom walking through the departure lounge I started to bump into things and people and could not find Sue. What seemed like hours later she held my shoulder and said I’d walked past her five times without seeing her.
She then asked me how much I’d had to drink and I said “just the one” and she said I sounded slaughtered. I reiterated I’d had just the one. The flight was called and we boarded the plane and I then fell straight asleep when I got to my seat, which is unusual for me as I like a drink when flying.
I slept for the whole 3 hour flight back home. I then became very irritable in the baggage reclaim hall at the airport on arrival back in Leeds and started to ‘lose my rag’ over silly little things, not knowing why.
We returned home that night and I went to bed with a blinding head-ache, which is unusual for me as I never had head-aches. As we had just got back from holiday we did not have any milk in for a cup of tea, so I got in my car and drove ½ mile to the local co-op and did not know why I had mounted the kerb outside the shop and did the same outside the house when I returned after getting the milk. I told Sue and we just put it down to tiredness, not realising it was another symptom of something more sinister. I got up from bed to go to the loo during the night and could not find the door out of the bedroom to the bathroom. Sue got out of bed and brought me back to bed thinking I was still drunk, so she thought.
It was only the following morning I thought something had happened as I felt strange. Sue went to work and my left hand side felt very different, as if it belonged to some-one else. My left foot on trying to walk felt like I was wearing some-one else’s heavy shoes, a size bigger that my own and not mine. My left arm seemed to just be attached to my body and not connected to it
I tried to send Sue a text message and I tried to put in the message. COME HOME I DO NOT FEEL WELL. I was keying in the wrong letters and Sue checked her mobile key-pad to see what I was trying to say as what I sent was all gobble-de-gook. She deciphered what I had sent and realised something was wrong and phoned the doctor and 999 and came straight home.
Then the headaches started and I never had had a headache in my life apart from the ones caused by the odd schoolboy punch up. My head felt like it was exploding. It took almost 2 months including the period after discharge before they subsided.
I went to the local A & E and spent 5 weeks in hospital. It was diagnosed as a TIA. I did not know what one was at the time but I do now. I went through the usual tests lumbar puncture/scans etc, they could have done anything to me when I overheard the team of Doctors debating whether to transfer me to a surgical ward or medical ward - I knew a surgical ward meant a brain op, only Sue my wife can look inside my brain, she’s been doing it for the 3 years we’ve been together (only joking Sue) and I was very relieved when I heard them say medical. I had had a right hand brain bleed which affected my left hand side. I had had a major bleed on top of the hundreds I had been having over a period of months unknown to me. It did not stop me refereeing until the one major bleed. I was being shown the red card, resulting in a long suspension for which there is no appeal. No more cautions for me.
The missing contact lenses…….. I wear contact lenses and my wife brought my glasses in and some lenses when I was first admitted. One night I thought I still had my lenses in and had forgotten to take them out. About 3 in the morning I tried to take them out and was pulling at my retina thinking it was a lenses. I called the nurse, who in turn got the Eye Doctor who came to see me to examine me about 2 hours later. She checked my eyes and lo and behold I had taken my lenses out, probably hours before and I did not remember doing so. No lasting damage. Just an example of initial forgetfulness. Forgetfulness, something that has stayed with me ever since.
This is not the end of the story, just the end of the 1st part…..I survived.
Part 2. My Goals
I set myself a number of goals whilst in the hospital in bed in the ward.
Go to watch a Leeds football match. Done
Get out for Christmas Done.
Get permission to fly Done.
Go to Spain to see house we were having built. Done
I even managed to fly out to Spain on my own 8 months after the stroke to see our Spanish solicitor
Resume Driving. Not yet done (DVLA Red tape).
Play football/referee again. Not yet possible.
Part 3. The great escape, as it was meant to be, me escaping from the hospital ward, to attend my love (The Whites), a Leeds United football match. I intended to pinch a wheelchair and get out of the hospital in my pyjamas(they were not mine as I did not posses a pair, but hospital issue, lovely) on a Saturday morning and wheel it to the bank and get some money out, as I thought they were open on a Saturday morning and they would give me some money and I would get a taxi to the ground without my season ticket thinking that the gate staff would just let me in wearing just my pyjamas in the middle of October. If the police had seen me they would have carted me off to the funny farm. I tried to persuade the nursing staff that there was a car outside waiting for me, a figment of my imagination however. My daughter came to visit me that Saturday morning and had to restrain me and put me back in bed. Escape foiled. I could have sworn everyone was wearing SS uniforms that day. I was a football referee before my stroke, 5 times a week. Everyone got red cards that day. In fact I’d got the red card and got suspended for a long time.
Part 4. Christmas 07 (12 weeks after the stroke) Tried to go shopping but it was a nightmare. People seemed to be running everywhere and even the smallest of shops seemed to have ridiculously narrow isles and low ceilings. Felt so claustrophobic. Got up around 9 on Christmas Day morning. Took me around 1 ½ to get washed, dressed and ready for when my daughter Charlotte came round. Did the usual present opening thing around 11 and the whole thing just overwhelmed me. Went into the kitchen with Charlotte and just burst into tears, for no apparent reason. Went to son-in-laws Christmas Day and slept most of it, I just could not cope. Sue and I went home around 8 and I went to bed and left Sue watching a film on TV. The whole day just felt so unreal. Good job, Sue my wife literally carried me through the whole event otherwise I do not know I would have coped.
Sue had to get a cleaner in to help keep the house clean and tidy as she could not do it with having to look after me. And even the noise of the vacuum cleaner distressed me
As I could no longer work and Sue ‘my shining star’ had to return to her job as a retail Manager for Tesco. Incidentally I must express my gratitude and thanks to all at Tesco for their expressions of good will and the company in general who told Sue when I had the stroke in the October to take as much time off work as she needed to help me.
Sue retuned to work in the New Year once she was comfortable in leaving me on my own for the day as I proved that I could be independent and could with help from the other ‘star’, my daughter Charlotte.
I decided one day to be of use in the house and as I could not cope with the loud noises of the vac. I chose to strip and change the bedding which Sue had done previously. I took off the fitted sheet, pillow cases and quilt cover and put on clean sheet, pillow cases and started with the quilt cover. I could not even find the corners and got lost inside the cover. When I’d master it and got it on I when to the bottom of it and turned it up the fasten the buttons of it. Therein lays the problem. I had forgotten how to fasten a button. On trying to do it for ½ how I just beat the bed with my fist a cried out WHY WHY WHY. I just folded the cover back and gave it up then for the afternoon. The whole process took over 2 hours. At least I had tried. Twelve months on now I can do button, but not as well as I used to do pre-stroke, one finger seems to get in the bloody way.
Part 5. Spring 07 Coming to terms with the fact you’ve had stroke.
That first beer that I was allowed to have in February, after going 5 month without - was alcohol free! I must have tried every brand there is in the world, ranging from a dogs urine variety to one similar to soiled shaving water. My success was finding one ‘Cobra’ light that was the only one that had a proper beer taste, but nothing like the real thing. I digress; I always seem to do that now. The first beer was nectar sent from heaven so now every drink I have I savour every mouthful. I’ve lost the taste for red wine, it smell and tastes nasty.
No more headaches. They seemed to have subsided by now. Around my birthday in April I started to put the stroke into a phrase I was playing cards and was dealt a bad hand. I have to make best use of the cards I have in my hand as I cannot give the cards back to the dealer to get a fresh hand as he’s gone to deal to someone else. This was the easy part. I kept saying if this is what I’m left I am happy with it. It could have all turned out more severe and I kept telling everyone. I’m one of the lucky ones. Some people are left with more severe disabilities. I can cope with mine, apart with the fact that I have had to accept that my footballing days are probably over and I stress the word ‘probably’. You never know. Forgetfulness and loosing track of time. This is the doomsday scenario. I am forever forgetting things and loosing track of time. Like when we got a loud knock on the door at 5am one Saturday, late Feb morning. I initially though it was Tom my lad who had forgotten his key. I slowly went down stairs and opened the door, it was not Tom stood there, but a face I remember for many years This chap, I’ve forgotten his name had taken us the Manchester airport and we were due to fly out to Bali that morning and I’d not phone to cancel as I had not been given permission to fly at that time. He understood.
When I plucked up the courage to do a meal it could take me all day and night. Even doing a sausage sandwich for Sue could take me 4hrs. On occasions she was so hungry and could not wait for me to finish and ended up having a bowl of cereal.
I am happy with things most of the times and still get the feelings of loneliness and thinking I’m not coping too well. It could have all turned out more severe and I kept telling everyone. I’m one of the lucky ones. Some people are left with more severe disabilities. I can cope with mine, apart with the fact that I have had to accept that my footballing days are probably over and I stress the word ‘probably’. You never know.
I now get Incapacity and DLA as I can no longer work with me being so forgetful and loosing all track of time. My sense of balance seems to have been impaired as I do not feel comfortable in getting around without my stick. My forgetfulness is a nightmare. Sue and I have books of note of things for me to do, even notes to check the books of notes and I even now still forget to check
I have by now not fully re-mastered the-board skills I’ve had since I went to college to be taught touch typing when I was 16.
Spelling and thinking of the right word to say as they on occasions seem so wrong. Sue bought me a big dictionary so I can check words. I still make words up and have to ask folk if they are correct. Like in April I was saying I was feeling a little better and de-stressed. There is no such word but it sounded good to me.
I have started to write a book about my stroke experiences and write poetry. I’m not saying it will win a booker prize but I find it therapeutic and it helps when I go visiting my local stroke ward as a volunteer.
I decided to become a volunteer to stroke victims and families as when I had mine, Sue and I got little post stroke support or advice on discharge. I am determined to make it a little easier for some folk.
Part 6. Autumn 08 (12month+ post stroke) Started to call it an illness now as I do not want to feel stigmatised by it. Started as a volunteer on the local hospital stroke ward, to help younger victims and their families come to term with the stroke and offer, support and comfort which I did not get. I love doing this now as it has made me feel worthwhile again and I can contribute to someone else’s well-being. I now want to give talks about it to interested groups. The hospital that treated me were fantastic, but the after-care consisted in being given the medication a handful of leaflets and being discharged, thrown in at the deep end as I keep saying. Christmas 08 was more tolerable. We had it at our house with just the mother-in-law, so it was manageable. Still get irritable, frustrated with myself and just say things out of context. The stammering, stuttering and memory is still as bad.
But I still get really tired and can sleep for hrs and some days I find it difficult to get out of bed. My wife Sue is in retail and has unsociable shifts to work and on some days is up and out for 6a.m and I am on those mornings sometimes still in bed at 10 then, times just passes me by, I get up take my medication, make a cup of tea and before I know it lunchtime has been and gone. Then when Sue gets home around 7pm she asks me what I’ve done during the day and I sometimes cannot remember. All I know is that I’ve filled the day doing something.
I look at myself in a mirror sometimes and cast my mind back 14 months ago. I still see the same person’s reflection in the mirror. Then I categorise them. The old Kelvin pre-stroke and the New Kelvin post-stroke. I much prefer the New Kelvin. He is more compassionate and as sensitive as the old one but contributes more to society and those in need. I like this person.
Part 9. Sleep
I seem to get very tired these days and on average sleep around 12 hrs a night and on top of that a can have a snooze at any time of the day. Some days it’s just an hr then others it’s more. I just put it down to the body and brain telling me it’s repairing itself. So I get used to it. Never go back to bed, as once I’m up I’m up so I say to myself. Don’t waste the day when I first had the stroke I did not know how many days life was going to give me. Now I live my days and try to enjoy and try let others enjoy. That’s when I’m not snoring! ! !. Sorry Sue.
If somebody said to me in the early days of the stroke you won’t be able to do this and that. I though. Sod you I’ll just prove you wrong. Like 6 months after the stroke I made my own wet to Wembley to see Leeds by train stayed in London for 2 nights and even mastered the Underground. I even made my own way to a Tandoori Restaurant I knew from my working days in London. So it proved to all who doubted me I could lead an independent life, post stroke.
Part 10. Christmas/New Year 08
A quite affair over the 1 week’s festivities, only the occasional visitor. It was only into the first week of 09 that I finally realised probably when it all started as Sue got me a Rod Stewart CD amongst other gifts for Christmas. As I was playing it my mind went back to July 07, 3 months before the major stroke. It occurred to me that it was at that week-end in Glasgow when we went to Hampton Park to see Rod Stewart and the Pretenders that was a very happy time and in all reality it was the last time I remember having that sense of happiness before the stroke struck. I did not realise that in a few months time my whole life would be turned upside down. I intend to start to do some work in the year. Hopefully someone will still find use for someone who still wants to work.
This is my story.
There is not an end to the story as each day is a new page in a different chapter of my life. The grim reaper did not have his day after all. He’ll have a few more years to wait before he comes to see me.
If you find my story remotely interesting, please let me know. If you want to get in touch just drop me an email.
In the word of the late Dave Allen ‘May your god go with you’
Kelvin. A STROKE SUVIVOR. January/09
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