Anniversary

Well, 6 years plus 1 week since my haemorrhagic episode which I have a perverse “pride” in knowing it was a lit less common than a clot. Weird! Well I’m in a far better place than many others are: I may be Version 2 of myself as my wife says, but I’m a talking walking living person who can drive walk go to the gym under a personal trainer around once a week. My abject fatigue has been massively improved once I was diagnosed with sleep apnea although having to wear a face mask every night is a passion killer! I’m on 7 meds a day which do have relationship side effects. My strength has gone down the drain and whilst I went back to work after 9 months the work load subsequently increased back to a level in xs of pre stroke levels I retired. Only 1 person from my team/department/ division ever keeps in touch which after 20 years makes me feel sad that I clearly didn’t matter to them. Whether that is true or not its how i feel. Flooded out in 2020 we’re scared every time it rains. So, we’ve decided to downsize and put the wheels in motion. I feel buzzing with the thoughts and excited after 28 years in the same house bringing up 3 kids: less maintenence therefore less cost, lower running costs etc but I feel like the proverbial clock ever so slightly slowing down to stop which I guess is my point: yes I’m “ok” but mentally I’m not so look forward look outwards and seek support from wherever you can

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HAPPY 6plus one, we’re very close, I’m 6 years plus 2 or 3 now, though mine was a common clot,
ocs couldn’t say for sure what caused it, but that doesn’t seem to matter so much now. Much has changed, and I’m still very much disabled. Posted on this recently.
I have just acquired a powered wheelchair so the next few weeks I will focus on mastering that! I’m very excited about it.it will open things up for sure, but much to learn. I don’t drive any more but a powerchair shouldn’t be beyond me, it isn’t a road going model, so I don’t have to be bothered about all that anymore thankfully.
Fatigue still comes and goes, not nearly as bad as it was in the early days, so I do have energy for some things.
Exit from work is a strange one, my exit was deeply unpleasant and took a good while for the wounds to heal.
I hope your move brings a new lease of life for you. Sounds very positive, as do you.
Very best wishes
TONY

@scimitargtc thank you for sharing your story. I hope your downsizing goes well. Will hopefully give you opportunities for other things.
I am sure you meant a lot toyour work colleagues. Sadly people often lose touch when things change. Good intentions get taken over by life events. I do believe that each & every person that touches our lives helps make us who we are.
Good luck with everything xx

Thanks to all respondents
Until recently I had recurring dreams every night of still working but knowing I’d retired and wouldn’t be reimbursed for visits to survey buildings, I was a regional facilities manager for a plc bank worked for the Bank for 40 years since leaving school after A levels. Went into property after 20 years in retail banking, went thru acquisitions and eventual outsourcing which fubars your pension thereafter but every day I thank goodness I’m still here have my wife of 35 years plus our 3 grown up children who are all doing well in life. Soz if u sound a sad old geek but honestly I’m OK have just had great news that our daughter and fiancee, who want to buy our house have received and accepted an offer on their home today. I still smart though from the comment made by my line manager to my wife as I entered hospital to advise my LM I wouldn’t be at work that day,: my LM burst into tears on the phone saying she knew I’d been under immense work loads/pressure, but had she done anything about it, NAH!

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@scimitargtc great news about the house, sounds like it will soon be time to downsize. 35 years of marriage is amazing. I will be celebrating 17 years next month.
The bit about your manager knowing you were under pressure sounds familiar. I had said to my boss many times about having too heavy a workload. When I had my stroke my deputy said to my manager that I had been asking for months for help so maybe now you should do something about it. Not sure it was pressure of work that caused my stroke……but if it helps for when I return I’m not going to complain :grin:. Your job sounds fascinating if pressured. I bet you got a lot of pleasure from it over the years.

Hi Anthony after being stroked knew working would be difficult, bit of vision loss but it was my processing skills that flummoxed me, a month on I tried gardening again at the place I’ve worked at for 33 years realised it was a nonstarter. Lived in tied accommodation and was persuaded when I reached retirement age to continue gardening with various incentives, how trusting and foolish I was . My employer who I had had a good relationship with wanted me gone in three months, that was a bit of a bombshell. Luckily took legal advice and was told I was secure and move in my own time . Had enough money saved to buy bungalow. Like you a very unpleasant and stressful experience and one I could have done without. Moved over Easter, completely exhausted but now can concentrate on getting back on the rails so the healing can continue . Enjoyed reading your journey so far the highs with the lows, but throughout it all you have a positive attitude which should be a lesson to us all . Pds

It is really shocking how employers can behave I’m appalled at how you were treated it must have been devastating especially with an employer you had trusted for so long.
I also had to resort to legal advice. I think my employer was scared that I’d go to a tribunal which if I’d won on disability grounds the compensation is uncapped. As it turned out there was no way I would or could have done it, I was too damaged to have coped. The solicitor was good and helped to negotiate a settlement agreement. For which I had to sign an NDA, which wasn’t an issue. I went first to my union but they weren’t any help, I think just understaffed. I am sure were not alone in these experiences .

It shows how much more both employers and unions need to understand about stroke, and disability in general. Absolutely clueless, but scared of tribunals.very difficult stuff to deal with when you’re at your lowest. The emotional toll was very heavy on both me and my family.
I’d definitely call on the Stroke association to help with employment issues. I feel there needs to be some kind of advocacy service.

I was lucky in that I have a family friend who is an HR specialist consultant who helped me a lot. The prospect of losing ones livelihood is hard for anyone but the difficulty is compounded with the various impairments that stroke can bring. The threat of losing your home must have been a nightmare, I really feel for you. It took me all of two years plus a bit to feel some recovery from the emotional damage my employer caused me. I’m relatively free of flashbacks now, probably 4 years on from the worst times, but happy now to be free of it.

On happier things I just got myself a powered wheelchair it’s a new model just on the market a carbon fibre frame so not as heavy as a metal frame and a neat little lithium battery. Made by DeVilbiss
I’m just learning how to use it but so far so good, it should open things up for me a lot.
So after a lot of setbacks and rough times, I feel quite hopeful as I enter year 7 of my post stroke life. Things are good.
I wish you well with your new home and I’m sure there will be many joys ahead

Thanks for responding to my post, it’s always nice to hear of the ups and downs of fellow survivors.

Best wishes
TONY

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Hi Tony, is it the Air fold , 17 kg ? Just this am , home demo & paid for 2nd scooter ( Quingo Ultra ) , old one unstable for me . Half hour demo/ shattered, bed/ rest of day . Update us on how much fun it is . David.

Hi David
It is indeed the DeVilbiss Airfold, 17 kg(that’s the weight including battery, which is a tidy little 1.7 kg lithium boy.

So far it is brilliant and just what I need. I’m taking it for a good work out at the weekend. I’ve got some hilly terrain near me and I need to know what it can and can’t do, the booklet tells me not to attempt anything steeper than a 6%gradient but I don’t remember what that looks and feels like so trial and error is the way to go. It handles my street fine which is a gentle bit long rise. I won’t go out without a companion initially until I know I’ve mastered it. The failsafe is a lever on the power wheels which disengages the motor so the chair can be pushed by a companion.

I’ll post a review when I’ve had a good go with it

I looked at scooters but at present decided that isn’t what I need, but out of interest, can you operate your machine one-handed?
I was a bit concerned about street parking with a scooter, and I wanted something I can easily get on public transport as I don’t drive any more. Bus drivers are ok with wheelchairs but can refuse a scooter. Local trains are good and will arrange ramps for you.I 've done all that successfully with manual wheelchair and companion, yet to try it under my own power.

Post a review of yours when you’ve had a thorough work out with it.

I’m really looking forward to it. I think it will open things up for me greatly.
Best wishes with the new machine let us know how it goes.

Bw
Tony