What happened to me


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 that
There is life after a Stroke; I’m living proof of it!


Sue


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. 

Pic_1_-_Before_my_stroke

 

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). 14th_June_1993_-_1st_time_out_in_3_months

In_hospitalThe 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!



1995_Fat
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.

 

This was written in 1995’ish, 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
that
There is life after a Stroke; I’m living proof of it!


Believe in yourself and magic
will happen


Reviews


Sue is amazing and you can’t fail to be inspired and motivated by her. I left the
workshop fired up and with some great ideas to help me to move forward”

 

“She stayed totally focussed, non-judgemental and asked the brilliant questions that created some profound breakthroughs”

 

"It's hard to put into words just how much Sue helped me move forward and I now have strategies in place to help me through the ‘black’ times"



Whyis Sue so exceptional?

Sue is an extra-ordinary listener and in a league of her own. Caring, skilled, insightful and one hundred percent dedicated to help you unlock your full potential.


The issues that Sue can help you fix…

Helps you to break overwhelming problems down into bite size, manageable chunks

 

Real empowerment she gives powerful tools for clients to help themselves

 

Sue creates exactly the right ‘can do’ attitude 

And  a lasting ‘should do’ attitude
 

How Sue works...

“Just like the Daleks I have a problem with
stairs and convention””

Sue runs facilitates fun, lively, interactive monthly meetings & workshops dealing
with the emotional issues of acquired conditions & disability. Not only for
the person with the condition but carers, family & friends.

 

In November 2009 Sue started running workshops on emotional coping strategies,
'disability, and how to survive it' program, called 'Lifegeta' dealing
with the plateau reached by many people after sudden disability & diagnosis
- (please read the 'What's Lifegeta ' page if you are interested in
this
)

As well as monthly group & workshops Sue uses video
conferencing and 1-on-1 video skype to support her work

“…nobody has to travel; it’s
exceptionally efficient, disability friendly…

I can even show you how to set
your camera to soft focus"


Just a bit about Sue…

In 2005 Sue won the National Life After Stroke Award for Courage from The Stroke Association beating 100’s of nominees in this category for her determination, and for her focus at retraining in order to help others.

(Photo’s
of Sue collecting her award are in the ‘Gallery’ section of this website)

 

Day_1_opening_Stroke_Assembly_270611_

 

 


As well as the monthly Peer 2 Peer
Support Group I talk at various conferences and clubs raising awareness of the
emotional issues of people with acquired conditions.


·   31st July 2013 - Life After Stroke Talk for
The Rotary Club @ The Broadway in Letchworth


     
7th May 2013 -  Life After Stroke Talk for The Inner Wheel @ The Broadway in Letchworth

      
The UK Stroke Club Conference - 14 and 15 September in Milton Keynes. - Workshop on
Emotional Coping Strategies

       
 The 2012 UK Stroke Assembly on Friday 6 and Saturday 7 July in Birmingham. -   Workshop on Emotional Coping Strategies


·    Beds, Herts and Milton Keynes Heart & Stroke Network Annual Conference at Hatfield on 25th April 2012 –   Talk on ‘Life After Stroke’





 




 

 
 
 
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