‘But you are too young to have a stroke!’ Those are the words I have heard the most or ‘you would never know, you look fine’.
At the age of 40, 8 weeks ago I had a stroke and my world has been rocked! I was abroad at the time and had been feeling completely well and the next thing I knew I was in hospital. I was immediately told I had a thrombosis in my head, but it was over a day later before the word ‘Stroke’ was used.
I could not fault the medical care I received abroad at all - within 20 minutes of calling the ambulance, I was having a CT scan and receiving thrombolysis treatment. I am so lucky! My physical symptoms disappeared within an hour and yes ‘I look fine’ because I have my limb function but nobody could prepare me for the cognitive difficulties I am left with. (I know it is still early days so these may subside)
The major issues I am left with are fatigue, sensory overload and EMOTIONS. Who knew having too many shoes and not enough storage would cause so much angst? Or the plant I bought 2 days ago, losing its flowers already would make me doubt my ability to look after myself? I could go on and on about what has caused my many meltdowns! Although they are getting better, there is no telling where the next one will come from!
Before my stroke, I was an outgoing person and in the first 2 weeks, I wasn’t fazed by leaving the house but this is not the case now. I think some of this is the anxiety of bumping into people and facing the ‘you not at work?’ Questions and having to explain myself. But I have soon learned my anxieties were and still are caused by sensory overload. I am finding conversations stressful; remembering the social rules of turn taking, being able to focus on what the other person is saying, comprehending what they are saying, thinking about a suitable response, thinking about and remembering the words I need for my reply then waiting for an appropriate time to reply is so exhausting and when these conversations happen in a busy or stimulating environment (light, noise and smells) it is very tricky. So it is easier for me to avoid than try to engage. (I feel guilty for needing to sleep for approx 3 hours afterwards) And that’s me on a ‘good day’. And going to shops or restaurants/cafes are tricky as sometimes the words just won’t come out so I can’t make my order. My speech has returned to almost 100% but when I am fatigued, I channel my inner sloth in movement and speech and the words won’t come out.
Then there’s the fatigue. No 2 days are the same. Some days I am up bright and breezy and can cope with the day then other days I struggle to get out of bed by midday and still need naps throughout the day. I am beginning to learn my limitations and am slowly beginning to know it’s ok not to be ok and although I ‘look fine’ I’m not. My brain has taken a battering and is trying to recover and build it’s new pathways. Time will be my friend by time to think is also a killer. I was told it will feel like a grieving process and for me, this is true - grieving for the person I was 8 weeks and 2 days ago; grieving for the life I had and the life I thought I would have in the future; The thoughts of ‘what could have been’ and the guilt of knowing how lucky I am to be able to tell my story and have the capacity to walk, talk and type. And then there’s the unknown - why has this happened to me? But more importantly feeling like a ticking time bomb waiting for the next one (the waiting game for test results and further scans is a killer).
I know people mean well when they tell me ‘I look fine’ and ‘you would never know there was anything wrong with you’ but those words make me feel like I should be able to do more. And don’t get me started on the ‘but you are far too young to have a stroke. Are you sure!’
As I said earlier, I was abroad when my world changed but received excellent care - within the 3 days I was in hospital, I received 3 CT scans, 2 MRI’s, brain scans, a bubble scan and DVT scans. There was no part of me which was Unscanned.
I returned home 2 and a half weeks after my stroke and immediately went to see my GP and was seen at the stroke unit within 4 days. One of the first questions I was asked was ‘Are you back at work yet?’ That’s when the guilt about work started. It was only 3 weeks after my stroke and I was being asked that! I returned to see my GP last week (7 weeks post stroke) and was looking to get signed off again and my GP asked me if it was really necessary and ‘is another 4 weeks not too long?’ I really don’t feel I am ready to be back at work (I work in teaching) due to the fatigue and continued cognitive difficulties but I am feeling pressured by the medical professionals but I will be sticking to my guns and not returning until I feel a lot better.
My skills have changed. I was a dancer in my younger years and now I have no rhythm nor coordination but hope this returns. I also find reading difficult and cooking is a no-go. However, I have, in the last few weeks, taught myself how to knit and the sense of achievement finishing my first scarf yesterday was amazing (cue a further meltdown!). It will be scarves all round for Christmas this year.
Anyway, I think this is enough from me for now. This is my first post and I am so glad I have found this page. I am struggling to find people of a similar age to me to share my experiences with and to rationalise my thoughts and fears with. (Sorry for the long post!!!). Thank you for taking the time to read.