Stroke and mirrors

I’ve thought long on hard on this post and it’s a essentially a collection of smaller posts I’m putting under one umbrella of times since the stroke I’ve had to make difficult decisions.

Do nothing or fight

In those very early days where I was still in shock, could barely sit up and couldn’t even believe in a life ahead I thought “I can stay in bed for the rest of my days or I can push whatever I have and see where I end up. My earliest physio team were very good at making me get up and do things. There’s been many times I’ve thought would it be easier to live life in bed, I’m also ridiculously stubborn and other peoples actions weren’t dictating my life.

Wheelchairs or walking

When I first got home the late spring of 2023 I wasnt t able to walk. I was transported around my house in a wheelchair, often by Rich, sometimes by carers who would, by accident, knock my furniture, fixtures and fittings making me frustrated . Going outside into the real world was solely limited to a wheelchair but i found people’s reactions made me deeply uncomfortable, people looked over my head to speak with whomever was with me, assuming I couldn’t speak or have cognitive function. Waiting for lifts/elevators to get up or downstairs is frustrating, even more so when people crowd into the lift and you’re eye level with everyone’s arse.

One of my occupational therapists had made a decision when I got home , without really involving me, on ordering an electric wheelchair the local supplying company made the process unpleasant and prolonged. When it did, finally, arrive I found it made me feel very vulnerable by feeling exposed. I had already become super cautious of not going far and by the time the electric wheelchair arrived I could take a few solo steps. One day I trundled down my village. Parked the chair outside a pub (it has steps to get in) stood myself up, walked into the pub to a stranger reacting as if I were Jesus “I’ve just seen you get up out if that wheelchair and walk!!” – ok 10/10 for your observation skills but kindly piss off. I had myself a soft drink and decided to head home, left the pub as a different stranger was sat in the wheelchair trying to use it (unaware I’d locked the keypad) still wobbly, quiet and not confident enough to kick off I loitered beside the wheelchair until he realised why I was there and got off. I went home, livid with the experience.

It did however give me a great big kick up the arse which I needed to get walking because I wasn’t experiencing that forever. Not long after I was walking mostly independently, not pretty or fast but thankful to be on eye level, not worried about batteries or people touching the chair.

I returned the electric wheelchair having used it a handful of times. I fully appreciate for some people it is their only choice and independence, I just couldn’t mentally make that adjustment, mainly because of other people.

Work or nothing

I remember the statistic that over 50% of stroke survivors never return to work. I quickly knew i couldn’t do my existing job the same as pre stroke nor could I afford to not work, I’d go back, try to adapt and see how it went. My passion, knowledge and enthusiasm remained.

Spoiler: I left after a year. I’ve written about changing job in posts before this one , with much more depth. Not fulfilling my old role how I wanted crushed me; but again did I spent 30 years at home with no career, individuality, purpose, income or structure. I changed job and hit a real stride professionally.

Not chasing people.

In the immediate aftermath of the stroke people were falling over themselves to visit me, especially in hospital.

It wasn’t to last, the novelty and altruism died off quickly only increased as time has gone on. I’ve had to have many chats in my head of “do I want to chase them?” “Am I the bigger person for trying to maintain contact” before settling on the mentality of: it’s a reflection of them, not me. Let them go.

We’re next in line
Let’s just take our time (let’s just take our time)
Don’t pull the trigger ’til the energy is just right
You’re fire, I don’t really wanna waste your time
Go too fast and we get too high
Your eyes really make me wanna change my mind
Go too fast and we get too high

🎵 – honesty, Nelly furtado 2024

I am mentally very much a “what’s that building?” “Where does that path go?” “I wonder what’s over there” “what’s behind that door?” type of person.

The amount of times my daily activities get derailed by side missions is very high.

Imagine having that huge amount of interest and curiosity in the world but not being physically able to complete it. The walk is too far, it might have steps without handrails, the building might be generally not accessible, it needs driving to get there . I’m a very visual person. I have a deep desire to know, see and learn the world but I’m stuck with a body that doesn’t cooperate and restrictions that come with it

No song lyrics this week, I’ve run dry

I’m aware that we live in a persistently online world ; I don’t shy away from it (with my blog, personal and stroke based instagram accounts and a regular vent on Theeads ). Someone said to me recently it looks like I have a nice life in reference to what they see of it online .

It’s not real though is it? Everyone’s social media feeds have a falseness and veneer , I too am guilty of this, it got me thinking of the days I don’t share, the uninteresting days. Not every day has a rehab breakthrough or fun event

No one sees the days when it takes me 2-3 hours to source the energy to leave bed because I’ve got no energy or enthusiasm and I can stay in bed cosy, reading being quiet and safe

No one sees the physical struggle of me trying to shower. No one sees me angrily launching a pair of socks around the bedroom because on the 3rd attempt I’ve still not got them on right.

No one sees when I pick clothes for convenience over style or of if I chose what I want the battle to locate and wear them

No one sees the days where I might not speak a word aloud until lunchtime or even later because I’ve no one to speak to.

No one sees when I go hungry or thirsty because I can’t make the food or drink I want nor can I pop to the shop to get stuff on a whim. No one sees the nights I stay up late, on my own, watching terrible films or listening to music because I can.

No one sees the sleepless nights where I can’t get comfortable in bed or my mind won’t stop racing.

This all sounds a bit whiny and that’s not my intention it’s just a reflection and documentation of something I’ve thought on that not all of my life is documented.

Self goal: 12th March 26. I’m not working. I’ve currently got nothing planned. I’ll document some of it on instagram.

To the depths of the ocean where all hopes sank, searchin’ for you
Well, I was moving through the silence without motion, waitin’ for you
In a room without a window in the corner, I found truth

• 🎵 the killers Shadowplay, 2007.

Recently Ive had the same comment / observation oa few times that I’m apparently quiet. 

Its made me reflect. 

Am I quiet? 

I don’t necessarily think so; I just dont always want to be open and ‘chatty’ with everyone, I like my peace, privacy and keep my circle close.

When im working and/or concentrating I instinctively focus and try not to be distracted, unless ive got my headphones in and am mentally duetting.

Knowing I had a period of time where I couldn’t physically speak, combined with the physical and mental effort I now require to talk means I chose my words carefully and precisely, at times I think the perception is me being abrupt, its just me keeping my peace and comfort. It’s a restrained engagement.

I have always been introvertedly reflective. My brain is constantly whirring away and sometimes I need to pause and let those bigger thoughts and emotions take up a little bit of processing space

I’ve always been too late
To see what’s before me
And I know nothing sweeter than
Champagne from last new year’s
Sweet music in my ears
And a night full of no fear

But if I had one wish fulfilled tonight
I’d ask for the sun to never rise
If God passed the mic to me to speak
I’d say “stay in bed, world
Sleep in peace”

🎵 – 3:45 No Sleep by The Cardigans

If I reflect and consider life pre stroke I was pretty relaxed, focused and just living my vanilla life. I had hobbies, primarily:

• The gym 4 or 5 times a week, I enjoyed putting my music on, having a set program to work through and seeing physical progression which made me feel good.
• Gymnastics, a couple of hours a week I’d throw myself around like a rag doll. I wasn’t very good at it, but it was fun.
• If I’d had a bad day at work I’d very likely go to the gym and put all that frustration into a heavy work out.
• I’m fortunate enough to live somewhere surrounded by green spaces and quiet; if the world was all a bit much I’d happily hop in my car, drive somewhere nice, wander in nature, then likely get some food.
• The time in life I have needed these outlets most have been post stroke when I’ve been angry at situations, hurt, disappointed and low.
• However I cannot physically do the workout I’d love. The idea of throwing a bench press around sounds fantastic, just not physically possible.
• I’d love to smash out a small routine on the rings or run full pelt launching myself at a foam pit
• I’d love to drive myself to the edge of the peaks, have a trot around a small village , grab lunch and enjoy some quiet. And yes, I can, and do walk but I’m currently not driving again and eating out is a whole performance especially if solo.

There’s a malevolence to this. I’ve never needed an outlet as much as the past couple of years but the physical limitation prevents me from doing it. Then I get more frustrated.

His friends. His home. His job. Almost everything that defined him. How was a man supposed to come to terms with a thing like that?

📖- pines, Blake crouch, 2012

Yes I normally post song lyrics but I’m deep in a reading phase at the moment

I asked over on instagram (@stroke and mirrors and @theBenRM respectively) for guidance on what to write. I mentioned life is pretty ‘boring’ now with: work, rehab, sleep, reading, rugby and health all just existing. I was asked by a friend to elaborate on them all so here.

Work

I’m 6 months in to my new role, still adore it, the place is amazing (please note I don’t ever state where I work), it’s big enough to keep me busy and engaged but small enough for me to show my skills, build a reputation and feel like I belong.

I get the feeling I’ll be there for a long time to come.

Rehab

Still mostly self guided although I might be getting a little bit of nhs support soon but I’ll not hold my breath.

I see my neuro physio S2 alternate weeks, we message constantly and he’s able to target specific things I want (eg moving quicker) and encourages me when I ask to do something out of my physical range.

I continue with my soft tissue therapist monthly too, I’d love to see J1 more frequently but time / money.

Sleep

I’m managing the fatigue side so much better intact I’m often very early for work which is unheard of, ever.

I am having some trouble getting to sleep but my mind is constantly running, add silence and it goes more. One big help recently has been that I’ve really cut down on my beer intake. I’d realised I was drinking beer to sit, alone, in peace at night time often deep in my thoughts and those things shouldn’t go hand in hand. I’m allowing 2 nights a week, no wine, just low strength beer, I feel better rested for it too.

Reading

Since Christmas I’ve really fallen back in love with reading. I really miss the tactile feel of holding a book and turning pages but a touch screen kindle works neatly with one hand.

I’m reading after work, in bed at night, when I wake up on weekends. I don’t think I’ve read this much in my adult life.

I’m currently on the final book of the Wayward Pines trilogy which I somehow stumbled in to.

Having a kindle means I can load up books to read in the future too. Current queue:

Infected 2008, which I initially read around its release, a graphic alien body snatcher sci fi thriller.

Lovecraft, the complete collection. I’m not sure I’ll love it but it’s been on my radar so long I feel I have to try. I’m told I will hate some racial undertones but enjoy the weirdness. I’ll update in the future.

Rugby

Training is back. Dark, cold nights on a Friday should not be spent outdoors but I don’t make the rules. First session back I was a bit rusty and found myself getting a bit frustrated and sweary (at myself) then having to calm down and apologise to my team mates. It’s rare my mask slips like that but I’ll own my actions when it does.

Matches start in April, I’m hoping nicer weather will have arrived by then. More consistent players and plays with the team should help us this season. It’s nice to be back with my boys.

Health

Without tempting fate, I’m pretty ok at present things are holding well, I feel ok,

Misc

The background things I can’t discuss still rumble on.

Driving is still a no go until the summer unless the dvla perform a miracle.

We’ve got a few breaks and holiday type things planned.

Pre amble– I’m writing this post from a wooden cabin deep in an English forest, I’ve got my husband, our dog and 2 very good friends for company along side a bubbly hot tub, crackling fire, mountain of food and a lot of wine. I/we needed this down time; some quiet, reflective space amongst nature and laughter. Perfect.

I’d internally committed to writing something because 2025 has felt a big year. As is traditional let’s go month by month

January

We kicked off the year being both cultural and supportive of our home town. A light projection show was set across our town centre buildings. Me, Rich and my parents had a good hour walking around, enjoying the novelty and spending money in local business’.

After a rough health episode in late 2024 I was booked to see a specialist cardiology service with a warning it might lead to discussion around heart transplant which was terrifying. Thankfully it was very much a deescalation situation and lifted a huge mental weight.

February

Recognising my community supported physio was becoming harder to access I set out to find a local private neuro physio as one was opening 20 mins away. S2 entered my rehab world, intelligent, enthusiastic and a great personality, he became my primary physio and good friend to boot.

I had a super rare night out with my dad, we have similar tastes; there was a theatre production of a dark horror play. We went early, had a couple of drinks and saw the show. It felt great to be out with my dad.

I had signed up to walk 90km over the month to raise funds for the headway Uk brain injury charity. I finished it early, walking over 90km and raising significant money.

March

Not much exciting to report. I was rapidly approaching being back in work for a year and remained as frustrated and sad as I was since day one.

April

I made contact with a disabled sports team (via lovely Jack at Sheffield Eagles foundation) and started practicing Physically Disabled Rugby League. Heading to my first practice incredibly nervous but being welcomed, surprised at how much I count do and quickly finding an interest.

May

I played a rugby tournaments as the spring had finally arrived.

A year back in work and I’d finally accepted this wasn’t working for me, it was breaking my heart to not work clinically. The focus had become what I couldn’t do, none of this helped me mentally.

June

June was great, I had lots of breaks. Me, Rich and the dog did a 4 night uk break in our favourite lodges, peaceful and relaxing. While there I’d seen a job opportunity which I followed up and made contact with a place that seemed a great fit.

I spent a week travelling European theme parks with two good friends. It was a great “solo” adventure and proved how much I can do.

July

I interviewed for the job I’d seen. Finding out on the same day I’d been successful. The promise of a fresh start, new challenge and environment gave me a huge boost.

I attended a huge social rugby event which was great fun, cementing my belief that I loved being on a team and the people.

A further post stroke health impact reared its head and remains mostly unresolved but a lingering issue, possibly for life.

August

Honestly, I can’t remember.

September

I finished my old job, it was surreal walking away from something I thought I’d do forever. But new job quickly filled my time and was such a good decision for me I never wallowed or looked back.

I attended a rugby end of season presentation night where I won player of the year, did a speech to a full venue, on the fly and was incredibly proud of myself.

Me and Rich attended a wedding which gave us chance to see family we don’t often see and celebrate.

October

I did my first new work semi social event. Mainly to show my face and integrate which worked well.

me, Rich, the dog and my parents also went away to our favourite seaside town for a long weekend. I managed to walk miles and while it was mostly ok, I did have a few mental spirals finding the business and noise a bit too much. One day I gave up and went to bed and had a cry; angry that everything felt difficult and embarrassed I couldn’t cope with a few days out.

Arthur (the orthotic) arrived in September, making a big difference to my walking which gave a physical and emotional boost.

November

Spent mostly working, rehabbing and trying to find that nice balance. I attended a multi day conference with my work, once again a “solo” trip but gave me some passion, knowledge and confidence alongside spending time with my new peers which was great.

December

Wasthe same as everyone’s, spent bouncing between Christmas based events. Finishing the year hidden in the forest all snuggly has been great though

Was 2025good?

Absolutely, I changed career (ish) to find peace and a better quality of life.

I found a sport

My bigger health issues remained stable though I did gain a new one to add.

Other things lingered in the background but slowly progressing which is reassuring.

I’d found a sport and a team.

2025 was the year I felt more ‘me’ I was passionate, relaxed, sporty, fun and loving. I have a good feeling for 2026 too.

The algorithm tells me I must post at 9pm tonight, so I’ve pulled a draft from back in the draft pile that only said: in an emergency as my starting point.

Essentially it’s me having a continuous awareness of my limited movements, speed and strength and what would happen if I needed those skills in an emergency?

What if I were in a shop and a fire broke out? How do I get out fast enough without causing a hindrance and risk to other people?

What if I saw someone needing emergency medical aid? I know my knowledge would help but I’d just be stood idly offering input not delivering any aid.

What if I were in that big shopping mall and there’s a bomb scare? Am I going to slowly shuffle my way to an exit and hope the timer is sufficiently length?

Perhaps I ponder on the darker ‘ifs’ a little too much and with any luck in these scenarios an adrenaline kick would help.

Run for cover
Run while you can, baby, don’t look back
You gotta run for cover
Don’t be afraid of the fear, that’s a played out trap, man
You know you’re not the only one
And don’t look back, just run for cover

🎵 – run for cover, the Killers, 2017

Meet Arthur

Arthur the orthotic.

Let’s rewind to winter 2023 about 6 months post stroke where I went to an orthotic appointment at my local hospital, a stiff, uncomfortable AFO (ankle foot orthotic) was shoved in my shoe and sent on my way, it was meant to improve my walking by assisting with foot position on steps; it did not. It over rotated my foot externally making me walk on the edge of my foot which was painful and ruined a pair of shoes within a day.

Within a couple of days I saw some of my regular physios who upon seeing the negative effect promptly removed it and put it in a bin, I was not sad to see it go.

Back to now times (autumn 2025) I visited a private clinic to trial an upper limb exoskeleton device to improve movement, but it was a no go (I may one day explain more). While at the clinic the physio and orthotist noted my walking with zero aids. Saying they thought it could be improved with an AFO. We tried 2 devices as an add on to the session.

I followed up a few weeks later returning to the clinic to give AFO a proper trial. I felt like Goldilocks after trying 6 different AFO devices on a walking track, up and down stairs, outside and inside : “too difficult to put on” “feels weird” “feels weak ” until we got the sweet spot of one that fits well, has a clever internal spring system and was adjusted to make it bespoke, off the shelf nhs generic one it is not.

Arthur (the orthotic) came home that day where I ended up walking 3 miles on day 1 and 4 miles on day 4. I don’t feel it makes a huge difference but I do feel a little sturdier. The hope is, in time, it will contribute to an increased speed too.

Arthur attaches to my leg and in my shoe which I like as it makes it discreet, until summer and short weather. And while he is 95% hidden under trousers the clever spring element sits to the side of my ankle and does look a bit like I’ve been tagged by the police.

I have a slight niggle in my head that it’s going backwards from using nothing to using an aid but I’m trying to mentally frame it as tidying up the walking. Let’s see how it goes.