Stroke and mirrors

One thing recovery and rehabilitation and recovery time have taught me is that two things can be true which, by its nature, is contradictory

I appreciate and sometimes need help, but not too much help. I stubbornly fight for my independence but am acutely aware I can’t do everything

I need help getting to places while I can’t drive, but not planning my time or organising things, that feels controlling not supportive

I might ask for suggestions on things I have chosen, but that doesn’t mean change or select it without giving me freedom

I’m aware I’m a living contradiction.

Having that awareness, but an inability to change it is contradictory too.

Two things can be true; which feels infallible to write and doesn’t sit well with me but it is accurate.

Rehabilitation seems to have a fascination with milestones.

The first step. The first drive. The first day back. The first time doing something you couldn’t do before.

They’re the moments people ask about. The moments worth celebrating.

But what happens when the milestone doesn’t happen?

My arm and hand haven’t made the progress I hoped they would. There hasn’t been a breakthrough. No dramatic before-and-after photo. No moment where everything suddenly changed.

For a long time, I waited for that milestone.

Recently I’ve started wondering if perhaps the problem is the word itself.

A milestone sounds important. Obvious. Something that stands out.

But perhaps most milestones are just stones.

Unexciting. Present. Easy to overlook while you’re busy living a life.

While I was waiting for progress in my arm and hand, life kept happening.

.

Weekends happened.

Birthdays happened.

Friends and family happened.

Work happened.

Pub visits happened.

Rugby happened.

Not because I stopped wanting more recovery. Not because I’d reached acceptance. And certainly not because I wouldn’t take more function tomorrow if it were offered.

Life just carried on.

The milestone I was looking for never arrived. At least not in the way I’d imagined.

Maybe I was so focused on one stone that I missed all the others.

The ability to make plans again.

The confidence to book things in advance.

The ordinary frustrations of everyday life.

The things that have become normal enough that I barely notice them anymore.

Perhaps that’s the thing about milestones.

We imagine them as flags planted at significant moments.

In reality, they might just be stones. Quietly appearing along the path while we’re busy looking further ahead.

I’m not sure there’s a conclusion to that.

My arm and hand haven’t made progress.

I keep going anyway.

Maybe that realisation is the milestone.

Or maybe it’s just another stone.

June 2026.

3 years ago when I had my stroke I knew recovery was going to be long “it’s a never ending marathon”~J but I had no idea how relentless it becomes, the constant hope, the failures, the knock backs , the diversions, I feel like I’ve been in heavy combat for 3 years. I had always expected summer 2026 to be a big one (for some unnamed reasons).

And it appears that’s not the case.

Not for want of trying.

I still commit to a hefty amount of rehab but my left arm and hand refuse to work

I work professionally in a role I find real value and passion in. But mourn being an active clinical person

I manage a lot of my health despite additional conditions: epilepsy, hypothyroidism, photosensitive skin, it bares the old adage of ‘no one knows your body better than you’ -I sometimes need someone who is willing to listen and help me get to my goals but that often isn’t easy. Disjointed teams and workflows exist which I shouldn’t have to battle but do, sometimes I nudge things in a direction and hope.

Driving- I’ve had more time not driving than I have driven post stroke even learning with my adapted car but health issues have repeatedly blocked it. I should, in theory, be ok to drive very very soon but this depends on the DVLA sorting their side out and previous experience is they won’t do it in the time scale. I’m trapped when I’m alone, I’m at the whim and mercy of other people; while I appreciate help I long for that freedom of “yeah I’m going there in an hour I’ll hop in the car” or “I fancy a walk around somewhere I’ll go and do that”

Speaking of cars, it appears mine is doing its swan song. It’s been undrivable for 6 weeks and in the garage for repair for 3. I’m hoping it can’t be repaired because I get to order an urgent replacement 6 months earlier than I should; I’ve already selected my next car and am full of anticipation to get it ordered. Or my current one back if the dvla say I’m safe.

There’s been a thing in the background for 3 years I don’t openly discuss but has peaks and troughs of activity, one day I’ll be able to close that door but currently it’s keeping my brain occupied

At time of writing we’re experiencing a heatwave in England with temperatures over 30oC, I’m not sleeping well, my brain has turned to wool through a combination of tiredness, dehydration and medication which is impacting my mood, physical coordination and mental processing. Combine these with a restless mind trying to work on all the above things and I’m holding my hand up and saying I’m not ok at the moment.

However the weather looks to take a cooler turn tomorrow and we go away next week, for a lot of quiet and rest time which is perfectly timed by sheer fluke.

We recently had a big clear out in our house.

During which we found a pair of yellow socks.

In an acute hospital setting yellow socks are a visual identifier to staff that the person wearing them is a “falls risk” meaning they have poor mobility, balance or all of the above.

I spent 8 weeks of 2023 wearing those socks 24 hours a day. I didn’t have the physical ability to stand. 3 years on I walk, independently for miles.

So when we stumbled. (Excuse the pun) on to a remaining pair at home, I had a weird mix of emotions but the best emotion was the pure joy of being able to put that stray pair of socks in a bin.

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.