My story

Hi all, just thought I'd take this opportunity to share the story of my stroke. I'm Neil, I'm 42 and from Manchester. I suffered a stroke in November 2018. My partner and I take our 3 year old granddaughter out for breakfast one day a week before work and this week was no different, except that I had dropped my partner off at an early appointment and it was just me and our granddaughter in the car. Driving to pick my partner back up, I didn't feel great and was struggling to keep focus while driving, but I just put it down to being tired as I hadn't slept well the night before. I didn't want to ruin our breakfast ritual just because I was tired so plodded on and we went to our local cafe. From that point, all I can really remember is feeling ill, dizzy and 'spaced out' is the best way I can describe it. My partner took me outside for air and all I remember was looking at my reflection in the cafe window and jokingly saying to my partner "I hope this isn't a stroke!!" My partner rang a taxi (she still jokes now that that's how she knew something was really wrong because normally I wouldn't have agreed to pay for a taxi when my car was outside!!) And as soon as we got home a couple of minutes later, she was on the phone to 999 and following their instructions to have me lifting my arms and touching my nose, etc, while we waited for an ambulance. Didn't have to wait long for the ambulance who did what I assume were standard tests, they were very good and decided that, although they thought there could have been a few things wrong with me, to be on the safe side, they would take me to Fairfield Hospital in Bury where there is a specialist stroke team. Many hours in A&E, CT scan and MRI later, it was decided I may have had a TIA, but was not currently experiencing anything, so was given an aspirin and a prescription for Clopidogrel and allowed to go home. The following day I received a phone call from the stroke team asking if I could attend an appointment early the next day. I saw my stroke consultant who confirmed that I hadn't had TIA but had in fact suffered a full stroke, 2 bleeds in my left frontal lobe and an older, larger bleed in my occipital lobe. After discussion with my partner and consultant I realised that the headaches I'd been experiencing for a few days prior, we're probably the start of my stroke, I just didn't think anything of them at the time 'coz I'm a man and that's what we do!!! 

Anyhow...that's all been a bit rambling, lol, but if you're still reading, I've been left with reduced movement on my right side, particularly arm and leg, although I suffer numbness on the whole of the right side of my body, but I can walk and talk, I'm back driving (admittedly not as confidently as before) and I consider myself very lucky, having witnessed other people after stroke as well as having read people's stories on here, I know that things could have been so much worse for me. The things I struggle most with are when my right leg has one of it's off days and I don't know whether I'm going to be staying on my feet!! The weird feeling - that I struggle to explain to people, but fellow survivors might understand - where my brain fails to acknowledge the fact that I have a right arm and will happily let it slam into any doorway I walk through!!! I also have issues with the fatigue, that thanks to this site, I have found is a common problem and also issues with my memory and being able to come up with the right word's when speaking, which I do find extremely frustrating!! 

If you've made it this far, thank you for reading (No hard feelings to anyone who didn't and just skipped to the end!! ? )

Dear Neil

Thank you for sharing your experience and welcome to the site.

I am guessing that you were quite fit. We are all dofferent, but pre stroke being fit does seem to be a key factor.

I wonder if you have "neglect". As i understand it, thats when the brain doesnt recognie bits of us. Does your discharge letter give any clues. Its not common but I have read of others with this aspect of a stroke.

I wont call it "my stroke". I didnt choose it and I dont want it so it was a stroke and not mine.

You seem to be nice and positive. I have read hundreds of postings and its the positive people that recover best. Being positive and smiling a lot can go a long way.

Your coming up for one year. I trust that you get some specialist advice about the neglect. Recovery goes on for ever, but at around two years things tail off. 

The stroke fatigue is, in my opinioin, grossly underestimated. I had a stroke in December 2015 and the "post stroke tiredness" was almost ignored. At least we now call it stroke fatigue or SF for short and at last we dont confuse it with sleepy tiredness.

I promise you that the SF and your other issues will slowly improve. I am 45 months and still the improvements are coming.

Nice to have you on board Neil

Colin

Neil, thank you for your story. You are still in the early stage of recovery and are doing well. I knowvit’s No consolation but I share a few of your issues. My stroke was in 2016 when I was 72, so am much older than you. I still have left side weakness and days when my weak leg walks less well than on other days. Fatigue still hits me every day at noon, so I have an hour’s rest. As for my weak arm, it often has a mind of its own. I now apologise for it as if it has a separate life of its own, which is almost does.

Keep fighting on, improvement continues, albeit slowly. Good luck to you.

Hi Neil and welcome! I can relate to your comment "I hope this isn't a stroke!" I also remember joking to my husband when my left arm went down like a dead weight when I tried to get off the sofa "You don't think I'm having a stroke do you ha ha!"  People I tell find it hard to understand that it happens with no illness beforehand and no pain when it happens just a weird feeling of something not quite right but just enough for your brain to tell you you need help. Neurologists say there is no warning of a stroke, it is instant - the click of a finger. I disagree slightly because, like you, I felt 'off' a few days before mine. My legs were wobbly like I was really hungry but eating food didn't get rid of the weakness. Thought I was coming down with a cold. My left eye was totally bloodshot on both sides. I am used to having one side of my eye go bloodshot as it often did when bending down too quick but all of my eye was a first. It also had a distinct darker red line on the left side of my eye. 

We have a good laugh at the silly things my brain makes me say now. I once spoke a whole sentence completely backwards word for word perfect! I tried to do it again but I couldn't and never have since. The fatigue does get better, promise! I'm 2 yrs post stroke and now only need about 20 mins bed rest midday as opposed to 45 mins before. Some days I can go without - there are good and bad days. I was also back driving after the month off. It was a bit weird at first. I found judging the distance of cars at junctions harder than I thought so always allowed extra time to get out. Parking in between white lines was tricky too. No matter how hard I tried I always ended up too far over to the right (my stroke side) but now I'm back to normal. We are all different and our recovery goes at different paces with different symptoms so my best advice is don't push yourself too hard and rest when your brain tells you to otherwise it shuts you down if you don't!

Hello everyone and thank you for your messages. I've been meaning to reply for a while now, so it's about time I did!! On Wednesday 13th of November (2 day's away at time of writing) I will be at the 12 month mark. It's been a tough year but I've had a lot of support from family and friends, which as helped a lot, although there are still aspects of my condition that I feel they would struggle to understand, so tend to keep to myself, but all the help I have had, both at home and from using My Stroke Guide has been invaluable. I wouldn't say at this point that my symptoms have improved much, but thankfully, nothing is particularly any worse, and living with the after effects of my stroke has become easier. I have recently visited my stroke consultant who was happy with my progress and has signed me off from outpatients, so that is a positive move forward. Once again, thank you to everyone who replied, your words were much appreciated 

Good to hear that you've made progress over your first year.  The first year is a great milestone for all of us - it does get easier as time goes by.  Keep in touch and let us know how you are going on. Take care