A submission of a survivor’s story who wished to remain anonymous after having a stroke at 35
Let me start by saying I think that for me having a stroke is the most overwhelming thing I can imagine, but I believe my stroke will ultimately make me stronger. I read through other peoples’ stroke stories on the Different Strokes website and I didn’t feel they were quite like mine, so I thought I’d give it a go writing my own. I had my stroke at 35 years old, after having brain surgery to debulk a brain tumour. I remember the lead up to the surgery vividly. A week before I went up to the hospital for my ‘pre-op’ appointment. The risks of the surgery were listed, so I tried to keep myself in a positive mindset by not dwelling on them.
A week later I found myself heading back to the hospital to stay the night before my surgery.
I remember eventually falling asleep and then being woken up in the morning to shower with some pink smelly liquid (pre-op disinfectant) and having to do a pregnancy test (I now understand planned surgery is best avoided during pregnancy (in the majority of cases). The next thing I knew my family had turned up, which confused me as I thought I hadn’t even had the surgery yet, but I had!
The next few days in hospital I was almost permanently confused, until one afternoon I was wheeled along to have a CT scan Later that day whilst my family were visiting a doctor came to tell me I’d had a stroke. I still do not know the details as to what type of stroke it was. I had weakness in the whole of the left-hand side of my body and I am now registered as partially sighted. I lost my left peripheral vision in both eyes. I didn’t notice the vision loss at first as I was unable to wear my glasses after the operation due to having bandages around my head. I was also convinced I was hallucinating due to the painkillers!
My hospital stay was a very daunting experience for me. I never really understood what was going on and I was constantly confused. My mum and sister both visited me daily making a long journey to the hospital. Their visits became my focus and I was so lucky to have this. They also came up with solutions to difficulties I was having that the nursing team didn’t seem to have time for. For instance, the medical team were constantly asking me to push them with my left or right foot. I could never work out which foot/hand/arm I was meant to be using for these tests! My sister brought in some nail varnish and painted the nails on my left a different colour to those in my right. The care team were asked to mention the colours instead of left and right and this helped amazingly.
The hospital ward I was on could not find me a bed in a Stroke Rehab unit, so I was sent home. In hindsight this was not an altogether brilliant idea. The local stroke team came to see me regularly, but I really struggled with everything at first. I found noises made by family members scary and the house seemed so much larger. Due to mobility, I also couldn’t cope with having my bedroom upstairs. So, I was very lucky because we were able to convert our garage so that I had a downstairs room and could therefore limit the number of times I had to go up and down the stairs each day.
I joined a local stroke club that meets weekly to play games (like bingo) and have a tea break. I didn’t attend this for that long, but I found the sessions I did attend really helpful for regaining my confidence in going out by myself again. I have recently started a ‘phased return’ back to my old job. I loved my workplace more than I can say in words and they have been really supportive in getting me back.
I was unable to get PIP benefits and would advise anyone who has recently had a stroke to ask a family member or close friend to help them apply for PIP as soon as possible. I think in my case I was denied as I was too far along the healing process by the time I got an assessment.
Another difficulty I have is that I was dyslexic before my stroke, so many of the tests that the hospital and various other health professionals such as speech therapists have given me, I could not do. Thinking about it I doubt I would have been able to do them pre-stroke anyway. I would love someone to do research, specifically on the dyslexic mind after a stroke. I think it could be a really interesting topic.
If you’ve recently survived a stroke I’d strongly recommend attending all the stroke groups and clubs that are local to you. Also join in online forums and groups like the Different Strokes ‘private’ Facebook group.
I really hope to get back to my job and progress with the career I have been aiming for for a long time.
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There are 100,000 strokes in the UK each year with 1 in 4 happening to somebody of working age or younger. Different Strokes aims to promote independent stroke recovery and help these younger stroke survivors reclaim their lives.

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