The long-term locked-in sufferer, 44, shares what life is like now without the ability to walk or talk after her tragic brainstem stroke. She is the longest survivor of her condition in the UK and her positive approach is highly contagious.
As you can probably gather, my life is rather unusual as I’m a long-term sufferer of locked-in syndrome. Back in 1997 when I was only at the young age of 26, I experienced a brainstem stroke that has since left me paralysed from the neck downwards.
It all happened when I’d returned home to my flat where I was living at the time. One minute I was walking through the door from work and the next minute I woke up on the floor to the sound of my house phone ringing – but my body couldn’t move to answer it. I couldn’t move my body at all and I didn’t know what to do. I lay on the floor helpless and hoping that somebody would find me and tell me what was happening. My phone rang countless times and I think it did for a couple of days, until my dad burst through the door to see where I was and if I was alright.
The next thing I know I’m at Freeman Hospital in Newcastle being told that I’ve had a serious stroke and that it’s left me permanently paralysed. Although I’m still mentally aware and can see and hear as I could before, unfortunately I’m without speech and have to communicate using a specialist system for my condition.
A big factor of locked-in syndrome is insomnia - so I usually wake up really early. It honestly drives me stir crazy! Generally I wake up about 2am and just lie twiddling my thumbs until I hear the carer up and about. Obviously if I have any problems during the night with things like feeling uncomfortable or my temperature is off I just need to press my buzzer and she comes to my rescue! It isn’t very easy though with a carer who is still half asleep and having to tell her what’s wrong through an alphabetic communication system. To communicate with me the carers need to recite the alphabet and I raise my eyes when they reach the right letter. They write the letters down to form words and sentences and it's as easy as that. Not!
When the carer sees my bedroom light on she’ll come in and put my glasses on for me and then I watch TV while she prepares my breakfast, which is usually Weetabix as it’s my favourite. I like to think of the saying “Have you had your Weetabix this morning?” because it reminds me that Weetabix is supposed to make you strong. It’s good to at least try to think optimistically.
At the moment I’m only allowed two oral meals a day, and it’s my choice which meals I get to eat. I’m such a foodaholic, if it wasn’t my choice I wouldn’t be best pleased! As well as that I have to fill myself with one liquid meal a day through my feeding tube.
At around nine o'clock the nurse comes in to give me my medication, so just beforehand I get prepared for her by turning the TV or radio off and making sure my bed is laid flat. Then the fun (I mean work) begins.
Once I’ve been given my fluids through my feeding tube, had the usual ablutions and am dressed for the day, I get hoisted into my wheelchair and then I’m ready to face the day ahead.
I usually tend to go on my specially-adapted computer which is designed to respond to my eye movements, and I do that until the physiotherapist comes for my daily sessions. The computer is my lifeline really as it's my only form of communication with the outside world, so I spend most of my time before physio using Facebook or emailing friends or family.
Before the daily exercise begins, if I’m having any dinner it will often be either soup or a jacket potato; followed by more water through my feeding tube.
Usually at one o'clock the physiotherapist comes to do my hour’s exercise session. At the moment we’re doing a lot of standing work to build my muscles up and improve my condition, which is working well so far. I’ve had some luck but it’s a very slow process as anyone can imagine, because my whole body has been paralysed for 18 years. My thumbs are what I’m having most success with, and a little with my upper body strength too. It’s extremely difficult for me but just recently I’ve been able to hold myself in an upright position for the first time since my stroke.
Once the physio session is over I often go on my exercise bike for a few hours to keep my muscles active and strong.
Sometimes during the week I’ll replace one of my physio sessions with a day at the Metro Centre in Gateshead. Shopping is one of my favourite things to do and I really enjoy snooping around Next for new interior additions to add to my home. My family always laugh at me when they visit and I have something new – and it’s nearly always from Next!
Usually after physio though it’s back to Facebook for the rest of the day where I speak to my close friends and particularly one of my favourite people who I’ve met through having locked-in syndrome. We speak regularly, and Kate comes to visit me quite often to check my progress. A few years ago she was a sufferer of my condition too, but managed to recover and regain her movement. She’s so inspirational and has written a book about her experience which has to be one of my favourites of all-time. Although, one of my guilty pleasures is definitely the Fifty Shades of Grey trilogy too.
For my tea I usually tuck into a roast dinner that I have prepared for me and more some water, and then the TV goes on. My favourite things to watch are generally soap operas like Coronation Street and Hollyoaks, but sometimes I’ll flick over to the music channels where I like to listen to my favourite artist Robbie Williams. I have a tendency to half watch the TV and half play on Facebook again until I get my final lot of water.
Shortly afterwards I start getting ready for bed, which is when I start to feel so relaxed and can allow my muscles to calm down from their day of strenuous work. The carer will then brush my teeth for bed, get me washed and put me in some comfy pyjamas. Once in bed, I’ll have a chat with the carer before settling down for the night and doing my routine all over again tomorrow.
