Stroke and mirrors

Initially after the stroke in hospital 3, the only way I was able to move was being pushed in a wheelchair, either by the therapists to physio or around the ward and hospital with my family. When it came time to get home I still wasn’t walking (I was barely standing) the plan was I’d be moved around the house on a wheelchair by Rich, and/or carers to start with, transfer to other seats / toilet / bed with a turning device. Which meant total reliance on other people. I quickly got fed up of this and then the carers kept slamming the wheelchair into my furniture and walls it mentally pushed me to stop using it and pretty much worked.

With the OT we had ordered an electric wheel chair too that in theory at the start was so I could get around the house, it took a while to arrive by which time I was self mobile in the house, so we decided the electric would become my escape vehicle to leave the house, it was capable of covering my entire village and a little more if I needed.

In reality it only had 1 run out. I took myself down to a village pub. Parked myself outside, hopped out, walked myself up the 4/5 steps to get in and to the bar, a woman sat by the window reacted as if I was the second coming of Jesus because she had seen me get out and go up stairs.

The push wheelchair became an outing accessory, shopping trips, days out like my annual Alton towers Oktoberfest boozy weekend with my brothers and that was pretty much it.

In the pub with the electric wheekchairAfter one drink I went to leave to find some idiot had sat in the chair and was trying to mess about with it, I’d locked the key pad before I’d gone in the pub though, sorry. So after bluntly telling him to get off, I trundled home. Deciding it had been successful in action but not a pleasant experience due to other people I decided I wouldn’t bother again. The chair sat in the spare room for a while before I realised I was hoarding a valuable piece of kit that could be used by someone else and returned it.

My walking continued to improve and improve especially after the 2 week leg FES trial. Without really realising the manual wheelchair hadn’t been used for months. I gave that back at month 9.

For a long time I thought I’d be in a wheelchair for the rest of my life which could have worked if necessary however it was never my goal, once I’d taken a few steps that was it, I was going to continue.

The electric wheelchair in particular symbolised an acceptance I wouldn’t walk very far or independently again.

To see them all go and our spare room return to normal felt hugely cathartic and progressive.

Something I’d never really considered, until seeing the interaction both my instagram @thebenrm and this blog get, some posts are well over 1000 views / interactions and a lot of messages But there’s clearly a wider interest in my recovery / progress and the global stats mirror this too, hi to my non uk readers, I see you!

We (me and rich) have batted about the idea of vlogging a couple of times, partly just as an additional way to share and document post stroke life and how I do things now in ambulant disabled life. We’d likely just focus on the more interesting aspects of life like driving, travels and holidays, maybe other exciting things in the future.

So the question is before I try to learn how to edit (or try and pull some knowledge from my a- level in media studies 20 years ago!

Is anyone interested? I’ll put a poll on my instagram when this post goes live, if there’s a yes we’ll consider it, if it’s a no then never mind.

Things that might be interesting coming soon:

– driving again with the new adaptions (look for the driving post)

– first foreign holiday, a cruise to Norway, see me stumbling around the mountains and possibly in rough seas.

-returning to work.

I’m aware my writing is much better than my speech (thanks stroke) and gives me time to pause and think and rewrite. Video is less kind

Prior to my stroke I was a good driver, aside from once driving head on into a skip (a story on its own) and the odd several parking tickets aside, I had a pretty spotless driving record for 19 years. The past few years I’d moved to automatic cars out of laziness Frustratingly, 6 weeks before the stroke I had taken delivery of a car I waited 2 years to build and deliver and absolutely loved it. I drove it to hospital the day before the surgery/ stroke. it was something I kept thinking about during early days; especially when I had zero movement at all , would I get back to driving again? Would I even physically get in a car?

It turned out getting in / out of cars was a pretty easy skill once I started getting some leg strength and walking back. I’ve been in lots of them since, from minis to range rovers I can jump in a car no issue.

Despite being entitled to free public transport within my region,using it to get to or from work was an unrealistic expectation it would be a 20 min walk (with my slow speed) to a bus stop, bus to town, walk to train station then a tram into the city, change tram then another walk into my work, about 2 hours of travel where as if I could drive I could park close -ish to work and it would be so much simpler and about 30 mins door to door.

When we started talking about work and driving, one of my OTs said I could get a free assessment at a local disability driving centre if she referred me so did and it would likely tie to the motability scheme if Eligible

It took almost 6 months to hear from the centre in which time I’d researched driving with only one functioning hand /arm and it was absolutely doable, adaptions exist for so many disabilities including those more severe than mine; I’d likely need secondary functions (indicators, wipers, lights) on a hand held steering remote.

I was entitled through the very, very good motability scheme (honestly the fact this exists is incredible) to a brand new car, adapted at no financial outlay. So I started looking for something that was : pretty small, I didn’t want a big car if driving was going to be a whole new challenge, not too low down and electric (I’d already paid for a charging point for my previous car and I do think electric cars are the future After seeing a few cars I’d have liked that needed a big financial contribution I narrowed my selection to 2 cars one was however taller than the other, we planned to go view them together at motability approved dealers, the first being the smaller car but looked a bit cooler (I am,still, a young man) however we had concerns it was too low down. If it was we would bounce to dealer 2 and a taller but more mumsy car.

It turned out car 1 was great, sporty, the model on the scheme was very cool, lots of tech and not as low as anticipated so I agreed to that one, I was in and out of the car multiple times, stood next to it it was certainly lower than my old car but almost as tall as me.

Soon after I got a date for mydriving assessment through the drivibg mobility centre.

I’d had a battle with the extremely unhelpful DVLA where my photo card licence had expired but as I’d declared my stroke on trying to renew it they wouldn’t reissue it without a driving assessment, I didn’t think I’d be able to do an assessment with an expired licence, the dvla medical team don’t take calls (due to the call volumes apparently. Here’s an idea: answer some and the volume would reduce) so I wasted weeks battling their bureaucracy but was told via letter I could take an assessment it’s just the photo on the card was old, I currently had no restrictions.

Nervous the card would be an issue, but armed with my letter, a car orderand an understanding of what adaption I’d likely need, I confirmed my assessment. In the build up I began to worry what it would entail id not driven for 10 months, never with only one functional arm, I needed this skill to return to work and gain independence the pressure to get driving back was huge ; it’s no wonder I didn’t sleep the night before.

On the assessment day it was a disabled gym day too, I was up, dressed and dad took me to the gym, the distraction being great. As we were leaving the same car even correct trim level as I’d ordered pulled up besides us, I spoke to the driver a younger man who demonstrated his adaptions (multiples of) I explained I had the same car on order, he said he loved his, and I was going for my assessment that day, he wished me luck (it all felt a bit prophetic)I went to my parents for lunch, a quick stress poo then dad drove me to the assessment.

I was interviewed by a driving assesor and OT who were both lovely, interested and sympathetic to my history. They noted my nerves and I explained the importance of driving which they fully understood, they made me feel really at ease.

A few cognitive assessments followed then visual and it was drive time (I wasn’t even sure i would drive during the session, I suspect some people don’t get that far).

I got into the assessors car, he demonstrated 3 adaptions I could try, one we ruled out immediately, the two single hand controllers were similar function just different shapes for comfort. my preference lead to choosing one, shortly afterwards I drove out of the centre using the secondary function lollipop adaption and did 30+ minutes of driving including roundabouts, reversing and busier areas.

Once we returned to the centre they agreed the plan: I’d need 5+ hours observed driving with the adaption, I’d be restricted to always needing the hand control and automatic cars but after the adjustment hours I could drive legally, solo and with no concerns.

I think as a person driving isn’t a huge thing, but the freedom and independence it’s going to give me and means I can do things like go to the shop on my own, so I’m contributing to the household again, and things like picking my daughter up from work are back on the table. Visiting friends rather than them always coming to me And it means Rich gets a break when we go places.

9 months post stroke (you know that “accidental cerebral incident” that happened during surgery where it was <1% possibility of going wrong.

I type this after shuffling round our local pub for the night aware every step is an effort and how poor my walking looks despite my best efforts.

My arm is currently sat across my lap as I’ve got such little arm strength I can’t even hold it up to let it sit on the arm of the sofa, it flops around like a dead fish but heavy and stuck to me. Yes there’s the odd bit of strength there under some precise conditions but it’s not natural, the arm just exists hanging from me.

Did the surgery that left me disabled work? No

Do I have much faith in cardiac surgeons now?

No.

Yesterday I had my due catch up with my lovely local cardiologist. The man who initially put my pacemaker in and held my hand during that as I refused GA and let him poke my heart under local anaesthetic, I have incredible respect for him and I think he genuinely likes me, we’ve got a very good relationship

So after being summoned for a visit I can’t say I was thrilled to find out what was on my heart horizon.

We set off well when after being called he was thrilled to see me walking independently, relatively at speed and the difference from when I’d last turned up with an FES Device strapped to my leg and a walking pole.

So into the appointment where we discussed lots of things but primarily the biggest issue currently is my pacemaker not managing my heart well enough and my heart not being strong enough to pump as he would like.

“Ben we need to take out the pacemaker, wires and replace it all with an internal defibrillator” my poorly working heart fell out my bum and down two floors of the hospital, some pushing questions confirmed my worst thoughts. He can’t do it, it’s surgically too complex and big for a smaller hospital, back to the big cardiac centre and general anaesthetic where I had the stroke. I could have vomited on his shoes. I’ve spent 9 months working my arse off from a surgical accident to re build some of my life and to then be asked to put myself back on the front line again feels intrinsically cruel and just a massive kick to the tits.

I am heartbroken (physically and emotionally). Torn between going for it and going for a long nap on a train line ; I’m not going to do that, don’t panic.

I’m on the cusp of driving and working again, then this shit hides round the corner.

Ending January 2024 in a pretty good place.

I’m discharged from my ‘hospital’ team who did some home and rehab centre work with me since I came home last summer.

So we’re all alone (ish ) now there is some community physio and OT available but no word from them as yet, the odd encounter I had with them before they made a terrible impression so I’m not really bothered if they don’t do anything with me.

Me and Rich continue 2 nights a week in a local gym which gives me great leg strength exercises and we’re seeing bits of upper limb coming back too. We pair the gym visit with a pool session and do self led hydro and some relaxing in the hot tub and sauna which are great for me, I do find I get embarrassed/ frustrated in the changing room being so reliant on Rich to help me. But long term goals to get my independence back on stuff like this remain.

I still go to the sports style massage physio once a month who manipulates my body to make it feel great and there’s some pretty instant responses to it too.

We’ve just started a whole new physio led therapy too. Every other week I’ll get an hour with a private neurology physio then an hour with upper limb robotic devices which either deweight or manipulate my arm and hand to push some Neuro plasticity. We’ve only done the initial assessment so far and left the place so impressed. I’m looking forward to returning again.

I’ve done a half day in work where it was nice to join in some activity and use my knowledge for the first time in a long time. Managed to get home too. And sit with my boss where we talked return in the spring time, just a couple of things to sort first (driving mainly)

But I’ve got plans I’ve got holidays and things to look forwards to alongside things like work and driving where I can regain some control again and I’m optimistic about the bits of upper limb I’m getting back and how far I can get using everything else.

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