Where do l begin? In 2006 I was a busy mum, working full time with a thirteen-year-old daughter and a eight year old son. l worked for the Community Nursing Service and had an active busy life with no health concerns and thought of myself as fit and well, running around in my spare time to football and dance lessons.
The memory of what happened has a fog around it, but here we go! I was driving back from a dance competition with my daughter when l began to get an awful pain at the side of my head and felt sick. The pain was one that l had never experienced before, so much so that l pulled over at the next garage to buy some paracetamol. I blamed it on a lack of food and a busy day and once home went to bed thinking that it may be a migraine, not that I’d ever had one previously.
The time after that becomes very patchy. l know that my husband rang for a GP to visit, who thought that l might have Bell’s palsy, as my face had dropped slightly on the one side – and unknown to me! All I know was that it was a strange sensation in my head and face. I’ve been told the GP returned again and I was admitted into hospital after I reported feeling numbness in my right arm. l can recall the hospital stating that they thought l may have a severe migraine and would be looking at sending me home at this point. I was having increased difficulty walking and even standing to wash. l remember collapsing on the ward and a friend of mine who was visiting me was a senior member of nursing staff and happened to be on duty. Straight away she stated she wasn’t happy at my discharge and care and was going to speak with the neurologist, who happened to be holding a clinic that day in my hospital. He appeared at my bedside, checked me over with now what l know now to be the normal reflex response checks and stated he wanted a urgent scan ASAP. After what seemed like minutes after this happening he kneeled at my side and said “Sharon, I’m going to look after you. We are transferring you to my ward at the Queen Elizabeth. You have a bleed on your brain and I think you’ve had a stroke
I remember crying and giving thanks to them for this, but at last someone had taken notice, although I was full of fear about having had a stroke!
I remember some of the ambulance journey and little moments of being taken to the Intensive Neurological Unit, with many lines and meds being put in, with many professionals running around and my husband being there when l arrived. I know I had many procedures over the days and weeks, including echoes, cardiograms, scans, MRI. steroids via IV, transesophageal echocardiogram (TEE), cerebral angiography….but I have barely any recollection.
My clearest memory after those first hours would be five weeks later and at the beginning of December of that year. The ward was a four-bed unit and my bed was by a window. My view was the clock tower, which l looked at, watching the hours tick away until visiting time. I was crying myself to sleep most nights and missing my family and my life. I couldn’t even get myself to the toilet, let alone manage to wee by myself. My bladder would have to be retrained as I had urinary incontinence and even sometimes faecal incontinence, so I had to wear those amazing big knickers pants. It’s amazing what sense of humour you can have about yourself in such situations. The nursing staff were talking about Christmas and advent and it was then that it dawned on me, that the length of time l had been in hospital not only scared me, but I realised that I wouldn’t be at home for the first time my children opened their advent calendar. I think l sobbed for the whole day and I was determined to be home for Christmas and begged my consultant. His words were “Sharon you can’t even walk unaided to the toilet or manage to wash. I don’t this this will be possible. You need to realise your life will have to change dramatically – and that also includes your career.”
My fight began. To get myself home l begged every day for physio. Slowly becoming able to walk to the toilet with a frame was my start. After every physio session I would be exhausted but carried on trying to do the exercises in my bed. I remember the week before Christmas and everyone was making arrangements to return home. I was determined l was getting home for my children. A discussion took place and I was promised that if I could climb the small stairs in the physio department then they would let me home. Each day they let me try and it felt like l was climbing mount Everest, not your small steps with rails either side, but I pulled my dense leg until eventually I did it! l can remember the emotion spilling out at the knowing I could now be assessed to go home – a home that l hadn’t seen since the October.
The day came when the wheelchair was organised as I still needed a frame to walk short distances. This was all packed into the car with my bags of medication, catheter bags, etc. I was so excited and happy to be going back to normality, or so l thought.
Don’t get me wrong, my husband and children were amazing and so were my friends, but the days ahead were terrifying, and I wasn’t prepared for all that lay ahead.
My fear once at home l kept to myself; not being in the safe medical environment I’d been use too, the noise of the family home, visitors, TV etc., was suffocating and even to this day too much noise all at once can affect me. My emotions had been affected and I would cry at anything and sometimes not even know why.
My brain fog and the fact that l repeat myself without knowing aggravates the hell out of my family and to this day this still happens. l haven’t a clue that I do it until they say that I’ve asked them something three times! Being in mid-flow of a conversation and then not knowing what I was saying, or what word comes next, I can sometimes blag it, but not always. The more exhausted l am the more it happens, even now.
My sense of smell has magnified, which is very bizarre. I could get a job as a sniffer dog I’m sure.
My days were so long. l had carers come in two to three times a day to assist me to the toilet, get me my meals and give me my medication whilst my husband was at work. I’d sit and watch people walk past the house while my car sat on the drive. Friends didn’t visit as much as they didn’t know what to say. The only time l went out was in a wheelchair. My weight had increased from my steroid treatment and lack of mobility, which meant that my weight had increased from nine up to fourteen stone. l would not let anyone take pictures of me, hence why l have none of me for the whole year after my stroke, anywhere. I didn’t want reminding.
I was re-admitted to hospital again after new year because of pain and it felt as if it was happening all over again. l was so scared but this time it was encephalitis. I returned back to the ward that had recently been home and knowing the staff made me feel safe. I had numerous spinal taps to relieve the pressure around my brain. My scans showed that I had large plaques on my brain and I still have them to this day. Once the pressure was slowly released after thankfully the discussions of a stent were dismissed and after another month in hospital I returned home.
Slowly, but surely, I began to walk independently – from wheelchair to frame and then eventually a stick and finally unaided. I went back to work fourteen months later and started to drive again. I did everything I was told I’d never be able to do again – even to go on and have a baby boy, who is now nine years old.
I never ever had an explanation as to why I had my stroke and they have never found that out. I have had a few relapses and have been under the neurologist ever since. He has put me under the “neurological inflammation” umbrella, which as an example would include MS. My stroke side is still weaker and if I’m tired I can drag my foot. After more severe relapses l need my stick again. My recovery from illness takes a lot longer than before. My fatigue is one of the most annoying things, but I’ve learned to give in and go to bed and rest, even if it is the same time as my nine year old. The numbness in my toes is still there like it was from the beginning, which effects my balance and my mobility, and I can also get disturbed vision when tired. I live with the fear every day like all of us survivors do when we have been through the frightening stages of a stroke and how it engulfs our life and changes everything, so quickly to the fact we can’t even recognise ourselves. But l did it! l proved them wrong. I may not be who l was before but I’m a stroke survivor and I’m proud!