Stroke and mirrors

And so with 2023s stroke year complete I’ve had time to think about 2024.

While I’m currently pretty happy with my walking ability it’s still very slow and laborious. I plan to continue improving it by just keeping moving as much as possible.

Arm rehab still very very slow although December did see the first few bits of activity which gives me a foundation to build on, frustratingly my nhs rehab care appears to have stopped and my continued requests to do more arm work never really amounted to much.

I am however planning on continuing the Neuro muscular sports style massages which so far, I think, have been the key to the additional movements.

Later in January going to try some robotic therapy, another new rehab technique that looks very interesting and opens up more rehab and access to more physio staff.

There’s a solid chance I’ll end up taking on a private physio too, just because it still feels too early to stop even if the nhs team are withdrawing.

In late January we have a weekend away with friends planned I’m excited for, hoping for some good outdoor steps with great company.

May brings our first cruise since stroke. Back to Norway which I love, lots of opportunities to walk, learn and relax.

We’ve also got a cute cabin booked for late summer

At some point this year I’m hoping driving will be an option again after which work becomes a real possibility, I’m ready to start doing something and contributing to the world again even if it means butting heads with my OT team who have big reservations over what they’ve experienced with other stroke patients, they might know strokes but they don’t know me; admittedly I’ll not scrub again which is a shame but there’s lots I can contribute in other ways, my knowledge, skills and experience remain as they have always been.

I’m aware this is a controversial post and likely to get some kick back and response but I have some strong feelings so:

What’s genuinely nice about having a stroke in this era is that there’s an online community of other survivors at your fingertips to look at for tips, progression etc.

And while I’ll partake in putting some of my journey out there I’m aware everyone’s is different so I’m cautious to not be “look what I can do” even if I’m proud I don’t want my achievements to belittle others or discourage them.

While some people might post every step they take;what infuriates me is going a step further and trying to promote a religious skew with it. Religion is like an arsehole, everyone has one but to go round showing it off is uncouth and no one wants to see it.

If I believed in a god, any god, I’d be furious that my stroke had happened, why out of millions of people had my god decided I needed to be the one to damage so much and pull away so many things. If it were anyone’s choice for this to happen they would be a truly evil and malicious being, not some all seeing, caring creature; so excuse my eye roll and sigh when stroke survivors finish every social post with “god challenged me, god Is good” frankly your god doesn’t care and you believe in fairytales for children, isn’t it time you wised up a little.

Usually I have no interest in anyone’s religion. If a floating man on a cloud brings you comfort, then you deserve that comfort and I would fight for you to hold that opinion but don’t be using your catastrophic life event to shove your choices at other people.

In comparison to my 2023 that never was (link), let’s look at what was.

It set off ok, battling some mental issues relating to impending surgery stress. Doing better, hitting a peak with fitness.

When I did get the admission call (link) life would never be the same.

A stroke at 36 was not on the cards.

Intensive care is a memory I don’t have (ptsd my psychiatrist suggested as the reason ) but remember being very scared and angry I couldn’t move, the Acute stroke ward has some memories buried away but again mostly just scared and Angry.

Getting to my local hospital was a great thing, it felt an achievement to get into less high level care and as if there was some hope for me.

Initially I ended up quite ill there with a medication reaction I need to elaborate on in another post (imagine those sea side crane machines but with a young man hanging from it with liquid shit everywhere)

Physio started there and despite initially not even being able to sit up by the time I left I’d learnt standing up again, some basic step like movements even if it needed huge amounts of help.

Then home was a huge turning point, the better comfort and sleep made a huge difference to give my body the push so my walking improved quickly and things that I needed that had been slow like toileting returned too.

Physio and OT carried on for a while often in my home.

We started going out for meals, to the pub, visited friends overnight and me and rich even did our planned staycation which was wonderful.

Later on I trialled a leg FES device (link) which was the push I needed to get walking long distances over different surfaces and made a huge difference to my confidence and life.

So while it’s been the most destructive year of my life and I still have a lot of work and a lot of concerns about (tiredness, work, driving, arm usage, travel) heading into the future. I need to be pleased of what I did achieve and feel loved with the huge support I’ve had, if you’ve been here with me, thank you so much! I’ve needed and appreciate all the love.

Let’s start 2024 as fresh as can be, with more plans for arm rehabilitation and strength building, Im hoping to get more independent and keep building on this strong foundation I now have. We have holiday plans and a potential pivot into vlogging on YouTube not just here and instagram

Best wishes and love for 2024.

Ben (stroke and mirrors)

I had planned a busy 2023 until my plans were completely derailed by the stroke. Here’s where I expected to be at this point

2022 had ended poorly, 6 months of waiting on edge for a call for my cardiac surgery had left me in a stressed and anxious mess, so much so a holiday in December 2022 was full of painc attacks and tears and almost an emergency flight home.

I decided 2023 would start with some counselling to get through this and did, which worked incredibly well for me, some graded exposure therapy and reflective journaling helped.

I had expected the late winter to carry on like this

Spring I had expected to know a date for surgery so up until that point pushed myself to prehab: hammering the gym, eating myself sick with protein and being in full damage limitation expecting 6 weeks of limited movement and possibly 6 months of non strenuous activity (I.e no gym). I was hoping by late spring my surgery would be complete with one week in hospital after and 5 weeks recovering at home, we had prepared for me to move downstairs to our guest room for that time (which turned out to be a great idea long term )

May was Eurovision, after years of waiting the Uk was hosting, we had a hotel booked in Liverpool for the second semi final and had planned to join the outdoor events during that week.

Beyond that I expected a long lazy summer of dog walks and enjoying long walks without AF making me feel exhausted.

Late summer / autumn I’d decided that we would probably be going stir crazy at home and I’d be ready to start working on my fitness again. 2 weeks all inclusive in Cape Verde for me and Rich was in my head, a stress free couple of weeks laid out in the sun drinking too much beer and hopefully for me getting into a hotel gym to start a new fitness push.

Autumn would have seen me continue with fitness, trying to get as much muscle as possible and I even had thoughts of a competitive adults gymnastic event.

By winter I’d hoped to be looking absolutely incredible. At peace with myself and feeling the best I ever had free of cardiac issues and looking like a beast, I’d head back to work in a great space.

I know you shouldn’t wish your life away and I am a believer of everything for a reason but idhave loved to have seen that year truly pan out.

Last Updated in December 2025, 28 months post stroke.

A lot of times people have started to ask questions then either stopped or apologised as they think it might be inappropriate so I’ve compiled them and answered as well as I can; I try to be as open as possible because if I can’t own this situation who can?

So what exactly did happen?

I’m still not 100%, I don’t think I ever will be; from what I’ve pieced together I went for elective cardiac surgery, keyhole through my ribs assured I needed it and how safe it was. When I came round after the operation in CICU (cardiac intensive care) , I couldn’t really move or speak and became distressed, my husband with me early on could tell my frustrations, he started to raise the alarm to the nursing staff; who mostly ignored it, many hours later neurological observations were done and a medical opinion sought. I was laid in a bed immobile, unable to communicate and very aware I was experiencing a neurological event; scratching letters into my husbands hand to try and communicate that I needed help, absolutely petrified. Come the evening I had a head scan, reviewed by the city neurology team who said it was too late by that time to do any interventional treatment.

How’s recovery?

Slow and frustrating. I shouldn’t gloss over the big achievements like learning to stand or walk or talk after spending my early weeks completely immobile and essentially mute or being able to walk long distances again but my walk still requires far more effort than it should, it looks bad and is slow but my arm still being useless is a bigger frustration , to see the leg develop and not the arm feels cruel, I am still seeing some progression, I can get a bits of movement from the shoulder, a tiny bit of hand closure but no extension some minimal bicep and tricep movement.

What’s rehab now ?

I’m doing some hours a week in the gym mostly Lower exercises like: leg presses, hamstring curls, leg extensions, kettle bell squats to improve strength, I’ve found I can get some assisted upper limb movement going too. My original hydrotherapy finished ages ago but I’m having to get a second crack at it for 1 hour a week . I see a specialist physio for soft tissue muscular massage once a month, I’m not sure it makes the biggest difference but she’s got a great knowledge and it feels so good afterwards, I have noted the arm movement difference happens the day after sessions there, maybe that’s it working (I hope) I see my private Neuro physio alternate weeks for an hour at large expense and each time we build and make some level of progress .

A while back I did try private robotic therapy combined with private physio once a month which sounded and promising, I love a bit of tech, but it was so expensive and time consuming it wasn’t sustainable.

What about work?

I returned to work just under a year after the stroke. I returned purely doing managerial aspects, I accepted I couldn’t physically do the clinical work and persevered a while before deciding to change paths, it honestly breaks my heart, I long to scrub and be at an operating table again.

Are you claiming / suing?

I used to have a bit of a moral issue with people trying to claim against the nhs as it’s such an institution which we all fund; to try and remove funds didn’t sit right with me, but now, sure, I think it’s the right thing to do, I just need someone to walk me down that path, in late 2024 I think I got the perfect person to do this.

Aren’t you angry?

Well obviously I’m not happy. I went from being the physically healthiest I’d ever been (minor cardiac issues aside) to being paralysed for a while and briefly in a wheelchair, but not ‘angry’ per se. This was an unfortunate accident I was the <1% risk chance , being angry won’t change the outcome or where I am. Ive had to learn the anger was ok to feel but ultimately unhelpful

6/7 months post stroke having been home 4 and a bit.

My ‘therapy team’ of physios and OTs from hospital days have continued with me to this point but keep warning me the end is nigh, hydro officially stops very soon, beyond that it’s all just ‘we will finish soon’ there is a community Neuro rehab team I can go to, I met their lead practitioner a while ago and he was, frankly, rude. He ignored me and spoke to his laptop during our session that was meant to be focusing on my arm, he said that wasn’t the aim of the session and got quite defensive about it, I think whatever his plans for me where I wasn’t fitting into that box and he didn’t like it, he left with one job (to order a splint for nighttime wear) but he never did this.

I today got a text out of the blue from that team about a referral by a medic I knew nothing about, after questioning it, he called back again defensive and unhappy, he implied I knew about the referral but had just forgotten, I haven’t. He was lying.

My medical doctor consultant phoned today, we had a scheduled call for tomorrow but he was free so did it today. He said he was happy to hear me speaking so well, thrilled to know I was walking independently and long distances too. I explained my arm was still very much not working, he couldn’t add much apart from the longer post stroke the harder it is to return (thanks for that boost of enthusiasm and confidence) he was discharging me from the medical side of things, but to continue with physio long term while I could

I got to thinking what will that look like? If I refuse to go to the community team after so far finding them rude, unorganised, aggressive and lying. Where does that leave me?

I’m starting to feel a bit like I’m going to be abandoned.

Just after the 6 month mark I’ve had the busiest week so far, lots of nice things, new normals and old things coming back.

My parents were on holiday so my fall back for lifts, trips out etc was gone.

Monday – new sports based physio / massage, rich was busy with work so I got in an Uber on my own to a new place, not the most friendly building in terms of access (lots of stairs without handrails) new people to meet and talk with, taxi home too, a good independent day. Another time I’ll post about the treatment I’m getting there.

Tuesday Christmas shopping round the big shopping centre with Claire then usual physio at rehab centre, rich busy with work again so Claire dropped me off, we went in the rehab gym doing lots of leg strengthening, I’d walked a mile before physio. After physio I tried to get an Uber but traffic was bad so surge pricing kicked in and would be 40 mins to get to me, with my new travel pass in hand I decided today was a day to try travelling alone, set off walking from rehab to the bus stop, turned out the bus stop was no longer in use, so walked to the next one and additional 40 mins of walking post physio. The screen at the bus stop told me the only bus was major delayed due to traffic, ugh. I tried a taxi again but no luck, thankfully Claire had finished the school run and came to rescue me. It took us 40 mins to do a 10min journey but in a bonus I got to see my niece and nephew while In the car

Wednesday disabled gym group, Rich took me for the first time, lots of cardio time, leg strength exercises and a tiny bit of upper, when it played, after group me and Rich nipped to another shopping centre to just grab some bits for lunch.

Wednesday night me and Rich went to our new gym, I did a bit of time on the treadmill, we did some pool /hydro together then a dip in the hot tub, sauna and steam room.

Thursday I was wiped out in the morning, 2 gym session in a day was clearly a bit much. Thursday afternoon I had proper hydro with the physio at the rehab centre, then a big shop round the big shop.

Friday me and my sister went out again (thankfully I was able to get up that morning) we went to the big garden centre looking at Christmas stuff, had a coffee and cake then drove down to the old mining village to buy some gifts from a specific shop there, we stumbled upon a giant tipi set up for for Christmas with a bar and fires inside, very on brand for my tastes, so we had a lunchtime wine. Then home.

Saturday I needed another sleepy rest day, the week has absolutely done me in.

Sunday, again pretty lazy, but afternoon, me and Rich went to our new gym again, treadmill, bike, leg strengthening then pool/hydro, hot tub, sauna and steam.

Next week is looking busy too but not as busy

It’s been exactly 6 months since I surrendered myself to the surgery that led to the accidental stroke ; it’s always referred to as a cerebro vascular accident, I hate that phrase as it simplifies and downplays the catastrophic event on not just me but my family

Me and my husband last night made a trip to the pub, just us, which two months ago wouldn’t have been an option. We discussed the last six months in detail.

We started at the start and my poor memory of early events, I’ve got vivid recollection of being in the recovery room unable to move or speak and being angry about it beyond that there’s a blank space for a while like someone deleted that section of my memory ,I’ve lost the rest of initial recovery, the intensive care stay and first ward, my psychiatrist said it was likely ptsd and my brain just decided it was all too traumatic so ‘stopped recording’ I love that analogy Liz thank you.

I pretty much remember every part of my long stay recovery unit though, the Saturday night ambulance transfer there. The ward tour on a stretcher, the lovely staff, the rehab starting the Sunday morning with a beautiful physio ‘S’ sitting me up in bed and my core being so week I couldn’t sit up and balance and I fell on her ‘it’s like being so drunk you hold on the carpet to stop the room spinning’

I remember every staff member and have an anecdote for each of them too, I also remember each visitor I had, learning how to use a toilet again, being so angry that standing took such a long time to learn the repetition didn’t help and then steps taking even longer but I did have steps there (post here) which led to my chaotic discharge.

Home with moving and handling equipment for Rich to drag me round the house, initially having carers to help me get up and wash in a morning and make me food, an electric wheelchair to get out, the hiking pole which was a mental and physical support for a while

Our first family meal together. My birthday drinks with my house full of friends and family.

My first pub visit, my first walk, our first weekend away.

I remember most of these things very vividly (my brain was back on record mode).

I now: walk independently for up to 2 miles a day quite happily, in and outdoors, surfaces not being an issue I’ve walked my dog, we go out shopping, I see friends, I go to an adapted gym (for now) and continue all my therapies plus continually search for more. I start another next week.

We recently sent back the electric wheelcgair, shower chair and perching stool, I just didn’t need them anymore and they were reminders of a worse time plus taking up a lot of space in our guest room

Life’s come back kind of fast, I wouldn’t have done it without my gorgeous husband by my side, my parents constant encouragement. Adhoc physio, driving me around And any friends who have been by my side thank you all so much my day one lovelies. Kindness, support and love have been half this journey.

The next six months I’m devoting to my arm function and my ‘strokeiverssary’ in May 24will be spent on a cruise sailing back to the uk in the North Sea. Let’s see how that day goes.

Keep reading and thanks for your emails. Ig messages and clicks. I’ll likely do a 9 month update too.

Ben x

I realise I’ve done a few mardy (Yorkshire slang for grumpy /sad) posts so wanted a good one.

I had a wonderful Wednesday

Set my alarms for 8:30 and was able to get myself out of bed pushing past the current fatigue / apathy in a morning that can sometimes take 2-3 hours to push through. But I had a disabled gym session which I really like and dad was taking me which I like too, we get a bit of 1:1 time in the car and he plays football while I gym so it’s not just people driving and waiting for me.

I got up, showered and ready for gym in time for dad to collect me which is no quick feat but was done. Gym was a great session. Seeing strength improvements on all the leg machines: press, curl, extension, abductor and adductor. I did a 10 min cycle and 10 min moderate walk on the treadmill too, my highlight was walking across the gym to a piece of kit and singing to the music, I passed a fellow stroke survivor who had seen and heard me approaching and joined in singing with me, walking along the gym together, silly but very nice; I love the group there everyone is supportive and nice. I even found I could do a little more with my affected arm (it joins in on a chest press and hand bike too) and I mostly manage to keep it in place.

After that we went to dad’s house for lunch, mum did some hand physio and we almost got a pinching movement between index finger and thumb as in they moved towards each other at the same time. Encouraging if not quite there yet.

After me and mum did a little supermarket shop, I’m good with pushing a trolley now would be better if I could let go of it on demand not just grab it until I drag it off with the good hand.

That night me and rich went to view a local gym / leisure club. My hydrotherapy is due to finish in the next 8 weeks and as I enjoy it and see progress Rich found somewhere with a pool to look at, we were welcomed into the centre. The manager was very pleasant; I was worried they would say I couldn’t join due to my disability. We explained how good hydrotherapy is for me and its finishing, he told us the pool is kept very warm, it’s pretty quiet in there and I could stand up independently in there. Walking it would be fine. He was happy for Rich to do some movements with me too. After that he showed us the actual gym. It had lots of leg strength equipment I could use immediately and possibly progress to upper body in time but could certainly try.

The whole place was clean. Modern and nice. It felt an ideal step up from disabled gym without going too far away to the commercial gyms I used pre stroke. As it’s in a hotel there’s even a bar with food, beer I get a discount too.

We agreed to sign up and he said as we wanted to use it for rehab and was sympathetic to my story he gave us a discount. Lovely chap.

All in all a great day, forced myself up for activities, good gym with fun time. Regular activities and then a plan to keep up hydro and more gym but alongside my lovely husband. Good day was good

I am well known within my friendship and work group for being something of a control freak, I like a plan, timings and always have, moving away from that makes me uncomfortable

But as I think back to life on pre stroke I wish I’d lived abit more vicariously, unplanned and sought more fun.

I should have got tattoos while I could (blood thinners stopped that years ago).

I should have done more nights out, even the ones in rough bars. Overcrowded with drunks, dancing. I always laughed, but prioritised being home, not spending too much money and getting home safely.

I should have done more holidays, sod the money I should have made memories.

So if I can share any wisdom it’s:

Do it: drink the beer,

Book the holiday

Laugh like an idiot

Dance when you can.

When you lose those options and just walking around the house needs thought, you’d regret it after