In order to tell you of my way of thinking I need to start at the beginning. This is a personal journey but by sharing it I hope others in the same position will see that they are not the only ones and that it is a self-power struggle that a lot of people who like myself suddenly found themselves disabled…
I wrote this account of events about 5 years after my stroke in 1995’ish as part of me ‘getting my life back’ (that why I chose the name LIFEGETA). I have included it on my website because I feel that it is important for you to see how it all started… reading the rest of this website you will see how I’ve progressed and made it my mission to ‘be there’ for people like myself, who have been suddenly disabled, and hopefully show thatThere is life after a Stroke; I’m living proof of it!
On April 24 1993, at the age of 26 I had two major strokes that changed my life dramatically. Life before my stroke was a mix of a glamorous day job working for a ‘high-end’ cosmetics company in London, and working and socializing at a nightclub.The week before my stroke I had been to aerobics on Sunday as normal. (I’m not particularly sporty, just doing it to get a bit healthy at the time!) For the next week I had a pain in the neck, (sorry about the pun!) it hurt if I turned quickly but I just assumed that I had done it at aerobics.
The night before my stroke I settled down to do some paperwork that I’d bought home from work, glass of wine, painted my nails… then bed… I remember getting up for a drink of water and feeling fine.
The next morning I remember feeling a little faint as I leant over the sink to clean my teeth, so I sat on the loo hoping that the feeling would pass (I remember thinking I’m never going to drink wine again when I have to be up for work in the morning)… Then I felt as if my left side was melting, there was no pain just a feeling that everything was in slow motion. Somehow I managed to stagger back into the bedroom (so I could walk then!), as I lay on the bed the feeling seemed to be growing. Soon I had pins and needles on the whole of my left-hand side; there was still no pain as I recall. I had just had a phone extension put in so I was able to call for help. My movements were slow and I found it hard to dial the numbers. I know it sounds a bit morbid but I truly believe that if I hadn’t had the phone in the bedroom I don’t think that I would be here today, as I would not have been able to get down the stairs. I tried to call my mum and when she answered I found that I could hardly speak. I managed to get the words ‘mum’ and ‘I don’t feel right’ out but then I dropped the phone. She arrived about 10 minutes later. I started to vomit and continued to be ill like this every 10 minutes or so. When my GP arrived he did a few reflex tests and called an ambulance to take me to my local hospital. I don’t remember the trip to the hospital. At the hospital I was taken to A&E and it was at this point I heard the word stroke (CVA – cardio vascular accident)… I remember thinking I can’t have had a stroke I’m only 26!, that’s what old people have!… boy was I in for an eye-opener!… I was taken by ambulance to the Hospital in London to have a CT scan to see what the problem was exactly. Once the scan was done I was wheeled to a small consulting room to wait for the results. However the doctor said that they were inconclusive and he would like to keep me in for a couple of days.
Once on the ward I started to feel strange again as if everything was in slow motion. I remember giggling because I had a big snot bubble and I couldn’t seem to coordinate my arm to get rid of it (sorry for the description, but I don’t know how else to describe it)… I
recall a nurse coming into my cubicle, but after that I don’t remember anything. That was when I had stroke number 2!… ‘the biggie’ (knocked out all my right hand side, my breathing, gag reflex… well everything!) I woke up about 12 hours later in intensive care and felt like I was in a straight jacket strapped to the bed. Then reality dawned on me that the reason I felt like this was because I was paralyzed from the eyes down, a prisoner in my own body, my mind was active, I knew what was going on but I couldn’t move anything or make a sound. The nurse came in and explained that I was unable to speak because I had lost my gag reflex (unable to swallow) therefore my voice box was not working either. I knew what I wanted to say but no sound would come out. I was surrounded by lots of machines. There was a ventilator as I was unable to breathe unaided and I also had a Nassau-gastric tube and there were pads on my chest checking my vital signs, as well as drips in my arms and neck. The nurse told me not to worry about the loo as I had a catheter fitted. I remember feeling like a baby, not being able to speak, move or even control my own bowel movements. A doctor came round to see me and told me I had suffered another suspected stroke whilst I was on the ward. This had been more severe and had been the reason I had lost consciousness. The stroke I had in the morning affected my left side and the one that I had at hospital had affected my right side, effectively leaving me locked in my own body, Known as ‘Locked in Syndrome’. I stayed like this for nearly 10 days, I was only able to communicate by blinking.
This ward was to become my home for the next 12 weeks, although I didn’t realize at the time! I thought that what had happened to me would right itself soon and that I would be back to ‘normal’ (whatever that is).
I started having physiotherapy quite soon after being admitted to ICU. Just getting me out of bed and sitting me in a chair was a long drawn out job needing about 3 physios and a hoist as I was like a rag doll. The physiotherapy I was having was passive just making sure my limbs were stretched. So many things were happening to me, I felt so out of control, I could see people I cared for getting upset, (happy faces but their eyes told a different story). I felt as if there was nothing I could do to comfort them. During this time I also had a MRI scan. The results showed that I had split the two main carotid arteries in my neck. They had ruptured on both sides, that’s why I couldn’t move my left or right side. The damage was mainly in the lower brain stem. (Acts like the body’s supervisor, telling the messages from the brain where to go, or what to move, like your leg or your arm).
The feeling in my left side came back slowly; it started with my hand and gradually over a period of days I was able to move my fingers again and finally I could move my arm a bit. My left leg was also getting stronger and I was able to move it slightly. My left leg and arm
had been still for so long that when I started to get movement in them I got awful cramps. Although they hurt I was glad to feel something, even pain! About this time I had to have another scan called an angiogram. The conclusion of this was that the bleed from the two carotid arteries in my neck seemed to be healing so no need for surgery (phew!) and there was no other sign of any of my other arteries splitting or any further abnormalities. This was good as surgery was the last option as the part of my artery that was affected was near my brain stem and operating would have been dangerous!
By this time the tube in my mouth was making my throat ulcerated and as I still couldn’t breathe, eat or talk yet it was decided that I would have to have a tracheotomy. (An air tube fitted through a hole in my throat connected to my windpipe). When I had it fitted a
few days later I felt quite relieved to have the pipe out of my mouth. I had begun to ‘mouth’ words, although there was still no sound it felt like progress!
The doctors started talking about transferring me to another Hospital for further treatment. I spent the next 3 months at St Thomas’s in London getting weaned off my ventilator. This was my first view of life as a person with a disability and to be honest it scared the
hell out of me! The last 3 months I had been in intensive care, in bed most of the time, in one room. I know this might sound strange but because I had only used a wheelchair a handful of times and I didn’t associate my inability to ‘walk’ with needing to use a wheelchair to get around, I was still thinking as a though I could ‘walk’!
Gradually after about 3 months I started to breathe for myself and eat so my tracheotomy and feeding tube were removed, the double vision had improved but had not gone completely.
After I had spent 3 months at St Thomas’s it was felt that I needed to go to a rehabilitation unit to prepare me for my ‘new’ life as a person in a wheelchair! The next 6 months were spent in a Rehab Unit at Addenbrooks Hospital in Cambridge.
In total I went to 3 hospitals and was ‘in’ for 52 weeks!
I left hospital still unable to walk, received physio for a year and then NOTHING!
Smiles can lie: I sank into a deep depression, I was 28 in a wheelchair, no job and I’d put on 2 stone in weight. I told people what I thought they wanted to hear.
I started to drink to forget ( I was never an alcoholic or anything, it’s just while I felt ‘tipsy’ I could pretend I was ok again!) – then I fell out of my wheelchair and caught my head on the corner of the table causing a nasty gash on my eyelid! As I waited in casualty I realized it was up to me to change my life. I could go on feeling sorry for myself or I could give myself a ‘kick up the bum’ and stop looking for someone else to blame. I started taking my physio seriously, put myself on a good healthy eating plan and stopped drinking alcohol. I lost weight sensibly, and I was able put my electric chair away; using my manual chair to get around helped me become more active. Then I began to try and take a few steps, walking with the aid of a stick and a few well-placed grab rails around my flat. I can walk a little outside but still use my chair for longer distances, but I’m sure that with time and a positive attitude I’ll get back even more mobility.
After many years of depression due to the emotional affects of my new ‘way of being’, are used alcohol and food to consoled myself as it was the only thing I thought control in my life.
But after falling out of my wheelchair I cut my eye open, it was then I knew things had to change so, started to eat more healthily, took my physio more seriously (something I couldn’t face while I was in crisis) and most importantly I got counselling to sort my emotions out.
This led me on to retrain as a counsellor myself (it took me 6 years working around the fatigue and the limitations of my disability), With the idea if I could just stop one person going through all the crap I had.
This led me on the path of self improvement where I learnt techniques in life coaching and training In 2009 I had the idea to set up a group that would help with the emotional effects of being in the body that didn’t do what it used to, I wasn’t sure how to start so I took a leap of faith and followed my gut feelings, I started with workshops on emotional coping strategies, which in turn led to the monthly meeting group.
The meetings have now been going for over 8 years, and have gone from strength to strength, with a diverse mix of people not just those with a condition but Family, carers & friends. I like to think of the meetings as ‘social learning’, we usually have a speaker who talks about things relevant and useful to emotional recovery, from nutrition, coping strategies to other local support groups as well as support and advice from people who’ve actually ‘been there’. I believe that talking, discussion, self development groups and workshops can make a difference in getting ‘YOU’ back on track. We also have a strong Facebook following for people who can’t get to the meetings as well as a presence on Twitter and an active website.
We are always looking for speakers and other support networks who feel they can talk to our group about other additional advice.