My stroke, exactly a year on and a year from hell

Sorry folks this is a long one, but I hope there’s people on here who can relate to the difficulties that I and my wife and 2 teenage daughters have gone through in the worst 12 months of our lives. So let me begin at the start…

June 2022- During a shopping trip with my wife. I feel a strange tingling in my tongue. I drive home, get out of the car and my wife asks if I’m ok cosim dribbling slightly out the left side of my mouth. I reply yes and think nothing more of it. I then go work a couple of hours later and develop what I think is a migraine. Taking painkillers thru my shift. I manage to see out my 8 hours at work and drive home. Get home and go bed, the ‘migraine’ is still there. Following morning I get up at 7am to take my kids to school and college, as I get out bed, I feel this excruciating pain in my foot and collapse to the ground. Scream for my wife and she manages to get me downstairs and rings for ambulance. I’m rushed to royal stoke hospital. Few hours later after the usual checks(CT scan etc) and it turns out if suffered a right hemisphere ischemic stroke and a TIA the previous day.
I spend a week in royal stoke hospital before being transferred to a stroke rehab hospital some 25 miles away( I was terrified of being put so far away from home and didn’t believe I needed rehab and that I would just wake up one morning and be fine

July2022- I’m now kid of settling in to the rehab apart the food and heatwave and my wife and daughters visiting as often as they can( my wife works full time) and going through the usual processes of learning to walk etc
End of the month I’m released and go home but during my time in rehab I’m gutted cos our family holiday in August has to be cancelled and I’m finding it strange why my dad, whose retired isn’t visiting me( my mums no longer here, passed away a few yrs ago)

August 2022
I go can go home. Relieved and feeling positive but still confused where my dad has been. Few days later and still get used to being back home( the place has been turned upside to make it safe for me) we ring my dad. It turns into a argument and he loudly tells my wife to f**k off and thinks he’s hung up the phone but hasn’t and in the background we can hear my dad slagging us off to his next door neighbor
We haven’t spoke to him since. My kids are disgusted with grandad!

September 2022 with the amazing help of my wife and kids I’m progressing well ( My mum-law lives over 200 miles away and father in law is no longer with us) I’m starting to believe in a few months I’ll be well again. But then I develop CPSP and it sets me back no end

December 2022
Quiet Xmas and progressed has really slowed.
But I’m still convinced I’ll be ready to go back work shortly after Xmas etc. Then 2 bombshells a day apart. Our lovely family cat dies and my mother in law passes away suddenly. It’s a nightmare and we’re all heartbroken

March 2023-
After some discussion with employer they decide to let me go on medical grounds. Cos I can’t give them a rough date when I could return. I feel devastated to lose my job but they have told when I’m well again they’ll take me back :crossed_fingers::pray:
Our family Car, which my wife uses for work fails mot and costs a fortune to put right

June-2023
So here we are a year later. I’ve still got CPSP and some left side weakness and haven’t gone back to normal yet. Family situation is still the same and I still don’t speak to my dad. I feel so let down by him. I can’t speak to him cos id just be banging my head against a brick wall with him. My wife and kids have been incredible. There’s no holiday this year either and we can’t plan anything cos we don’t how long until I’m recovered and financially things aren’t exactly amazing.
So that’s basically my story of a year from hell
Sorry I went on and on…

Thanks for listening

Joey

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Sounds like you been through lot! I’m sure your children are glad you’re still here though! Keep pushing! Time solves everything!

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Thanks Raks.
My wife said that to me the other day at least they didn’t lose me, and it reduced me to tears. I’m lucky they’ve been so amazing, as have my ‘work’ mates and stroke association and the people on here :+1:

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Hi, you’ve definitely had a rough ride. Thank god for amazing family and friends. Hopefully things will be improving soon.

Keep on keeping on
Regards Sue

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@stokiejoey well done on reaching 1 year & i’m sure you’ve made a lot of progress in that time. More will come in year 2.

You’ve definitely been through some rough times but you’re still here & your wife & kids have been amazing by the sounds of it.

Here’s to a brighter future for you all.

Best wishes.

Ann x

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Thank you so much for the Lovely replies. Really appreciated
It’s actually kind of felt good to type it down what the last 12 months have been like

To my work mates I’m the joker who always makes them laugh even when a couple visited me in hospital. But deep down it hurts not being with them and more importantly it hurts that I’m not quite the same father to my kids or husband to my wife
My wife is incredible, as are my daughters, but my wife works 12 hour shifts as a care worker and I want her to come home and for our lives to return back to normal and have things to look forward too. She’s incredibly patient. I’m not and a pessimistic person. I find it hard to see when things will improve but I know it takes time

My family situation is complex but I don’t think I will ever forgive my dad for letting me and my family down when we needed him most.

Anyways Thanks again folks :+1::pray:

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het @stokiejoey , If you ever get down to your old family holiday locations near me then you know that there’ll always be a cold beer and a warm welcome for you

take care mate

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We still hoping go down later in year to St minver near Wadebridge but things haven’t exactly gone to plan so far so we’ll see

Thanks mate👍

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Hi @stokiejoey, some people can be really unpleasant and totally uncaring/ignorant. I’m so pleased your wife, kids and work colleagues have been so lovely, it makes the world of difference. The ones that treat you badly show their true characters but the ones who stick by you probably truly understand and see how hard it is for you. These are the people that are the salt of the earth and can never know how much it means to you.

From a horrible saga come the true heroes.

I hope you and your family get to have a nice holiday soon.

All the best.
Mark

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It’s obviously from that saga that you’ve all had a tough year. Hopefully what they say that what doesn’t kill you makes you stronger proves true for all of you

I’m in my third year post and I think my recovery is accelerating. I hope that’s the story for you too and that you don’t have to wait till the third year that you can accelerate in the second.

I can only vaugley imagine what the central stroke pain adds to problems. Hope you find relief for that and that it fades

Thanks for sharing and Good luck

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Hi Joey,I suffered a stroke in Nov 2018, right side affected, i feel for you mate, last thing you need is crap from family, im still working but find it hard to except ill never be quite the same, just got to be thankful we are still here! If you make it down to St Minver give me a shout if you fancy a beer, i live near Wadebridge, all the best Andrew.

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@bullis Hi Andrew, just wanted to say welcome to the forum. Great that you are able to work but yes we never feel quite the same after a stroke.

Look forward to hearing more from you.

Ann

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Thanks Ann , i dont know why ive never written anything before, glad i have though

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Cheers mate. We were booked in for caravan park in st merryn last year. We love it down there, especially places like mawgan porth, portreath, Rock, Harlyn bay etc

Joey :+1:

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Welcome to the forum @bullis.

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@stokiejoey your story sounds horrific. Family are strange sometimes, I recently had a birthday, not one of my 4 brothers messaged me nor did my mum. I have spoken with my mum today and she brushed it off, as they are busy working. My family moan if I don’t message them on their birthdays. I have never felt so alone on a birthday as I had tis year. Luckily my wonderful husband was there to keep my spirits up. Good luck with our continued recovery

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Thanks. Mines extremely complex. I was always a mummies boy and although we had some major differences during the last 10 years or so of her life, when she passed away in 2014 at the age of 59, I was devastated and never felt grief like it. During my time in hospital and rehab, I cried so much and would have given anything for her to magically appear and tell me everything was going to be ok.
On the positive side, I owe so much to my wife and daughters for their love and support and especially over Xmas time when my wife was dealing with the loss of her own mum.

Joey :+1:

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It’s now ten months since I had my stroke and I am feeling overwhelmed. I had thought that one recovered gradually as I have several friends who have done just that. My stroke was literally a bolt from the blue, I was healthy, active, not overweight or diabetic or a smoker. Probably drank a bit too much vino but only socially. I spent two and a half months in Hospital (I live in Portugal) as I couldn’t swallow and improved enormously to the extent that I could walk almost normally plus outwardly looked back to normal. I did lose feeling in my right leg and arm, it was a left ischemic stroke, and hearing in my right ear. Plus lots of little irritations like incontinence, over salivation and pain in my right hand and arm but overall felt very positive about my recovery. In the past couple of weeks the regression has increased and this week I am back to wobbling instead of walking normally, I have a lot of pain in my right arm and the saliva issues now cause painful stomach wind. I also feel terrible and have taken to my bed where I am driving my husband nutty with my self pitying moans. I am supposed to go for a walk every day but no way have I been able to gather myself together enough to walk. I take aspirin, bp and statin medicines. It’s difficult here in Portugal to get medical advice except from the stroke team in the Hospital who see me every three months. Otherwise I have no one to consult except my GP who steers clear of interfering with the stroke lot so in essence just tells me to keep exercising and being positive. I know this is what I should be doing and I guess why I am writing this moan is to hear from anyone else who has had saliva issues and whether anyone else has had severe regression. In the past I sometimes had really bad days but then things went back to improving and I felt positive again. My husband is 85 and not in the greatest health and my daughter lives in the States and isn’t well herself plus working and coping with family. I used to be able to produce one meal a day, now it defeats me. Thank you, I guess I just needed to vent and I wonder if it will make me feel better! I know there are lots of us out there struggling with our own demons and it helps a lot to have this Forum…thanks again. Ana

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Hi Ana @Anav sorry to hear you’re struggling at the moment. Have you over done things recently? That might make you feel worse. I know about 10 / 11 months after my stroke some of my symptoms got a lot worse. I thought it might be because I’d increased my activity levels. There is something callled decompensation of stroke & it may be worth you having a look at this link.

If things don’t improve you should try & get more help from your GP or an earlier referral to your stroke team.

Wishing you all the best.ann x

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Thank you for this encouragement and for the link Mrs.5K. Just bucks me up to have a bit of attention and positivity. I know this too shall pass and I also know that we have no choice except to plod on and make the best of it. So thank you as every word of encouragement helps. XAna

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