Ironically I’m writing this from my bed.

Prior to my stroke I was always ‘known’ for sleeping: the ability to drop off pretty much anywhere. Any time, on a weekend I’d rarely see an AM hour. With hindsight this was likely the impact of being in AF for the entirety of my life.

Post stroke the immediate after period was full of atypical stroke fatigue. I’d barely make 4 hours without a nap. I once fell asleep during a physio session. On my return home I needed so much sleep to just function combined with some emotional trauma getting out of bed was, some days, impossible.

Once I got back to work and in a routine getting up became easier.

18 months on and I still require more sleep; my brain is still trying to learn how to be functional in life and repair the damaged areas. But I’m pretty good at planning my days off and weekends to get those morning time extra sleeping times in.

Frustratingly one of the most difficult parts of sleep is getting comfortable. Pre stroke I slept on my belly, left arm under my pillow and head with my right tucked in the quilt. That’s not an option any more. I end up sleeping on my back and quite often my left arm falls off the bed so I wake up with a sore, stretched shoulder. Or I sleep on my left side precariously holding my left arm to my chest with my right which isn’t verycomfortable

.

Occasionally I might nod off on the sofa, laid on my right hand side which is fine until the dead weight of my left drops somewhere (normally wrist downwards into the sofa) and I wake up in pain that it’s been in an awkward position.

I miss comfortable sleeping and not worrying that every time I sleep I’m going to wake up exhausted ir in some degree of discomfort

I’m aware my most recent posts have been a bit doom, gloom and dark and it’s time I posted a positive one so here we are:

In December 2024 while mindlessly doom scrolling I saw a post from headway UK (a brain injury charity; I have used some of their online resources before but that’s hopefully a long story for further down the line) and I know they run groups, activities etc etc for all brain injury survivors not just stroke.

They posted about an upcoming fundraising drive to get people to walk 90km in February 2025 fundraising for them

I continued doom scrolling but the thought kept coming back to me over the next week “it’s time you gave something back Ben” and you can walk; sure it’s not pretty or fast but you do walk.

A bit of fast maths told me 90/28 was about 3km per day, I looked on my apple health and was routinely hitting or well over.

I talked it through with Rich he agreed it was do-able maybe doing the odd longer walk supplemented with a daily 3km or there about and he’d help me.

Feb 1st I was almost bang on 3km

Feb 2nd was much lower, I had a lazy day pottering round the house and

My next day off I decided I was getting a catch up in; I set off from my house, through our adjacent woods, followed a spring /stream almost to the next village then back home. It was muddy, arduous and I began to question if I had overestimated my ability to do the challenge, what kept me going though was seeing the donations come in, I’d set a goal of £150 over the month and watching the donations come in was humbling and made me realise how supported I was.

The second week I could pull back a little; easily getting my 3km per day when in work, the Sunday of that week Rich made a suggestion: let’s walk round our village dam, with the dog and end in the pub. All these things AND km off my total. Let’s go!

Week 3 followed week 2, and week 4. Rounding off in the pub with a long walk. I was getting close.

Headway announced all completing walkers with 90km and £150 raised would get a medal and certificate. I’ve never had a medal and I want one!

In the final days I’d started getting very close; I wanted to finish the 90km on a high, plotting to make a final walk to the pub, crossing the threshold as my 90km ticked over.

Because I was high activity at workthe 90km ticked over without fanfare as I waited for a tram home, just me, a few scattered strangers and a feeling of underwhelm. Once I got on the tram,sat down, confirmed my numbers were correct and I’d completed the challenge it started to sink in.

My mind ran back to my days on the stroke ward convinced I’d never walk again. Those first movements of learning to stand then making some shaky, poor movements to make my first steps.

Here I was having knocked 90km in 26 days (2 days early) . I checked my fundraising amount the £150 goal long in the distance sat at £305. More than double my initial goal.

For a man who had at one point given up ever walking again I’m chalking this one episode up to my determination, ambition and passion which have always sat behind me.

I’ve done it on socials but I want to cement some thanks:

Rich for doing lots of the walks with me

Donors I appreciate every penny

Marina for joining me slowly bumbling around behind her

Oliver my good friend who joined me for one indoor walk and lunch

Let’s be clear.

I do not mean the Disney ride with terrible but infectious soundtrack.

Nor do I mean the “it’s a small world” phrase when you bump into someone you know when on holiday etc.

I’m talking about the world being pulled inwards which is what happened because of my stroke.

I darent travel far (flying, in particular airports terrify me now: so big, time restrictions and busy, I dare say security would be a nightmare too ) so in that sense the physical world has become out of my reach, in the past I’ve hiked through Caribbean rain forests topped off with a swim in a natural waterfall pool. I’ve swam in naturally formed pools in Italy, I’ve explored the pompeii site with a deep interest running building to building, I’ve jogged beachside trails and hiked up volcanic landscapes chasing the kids in the canaries. Ive hiked up forests next to fjords in Norway I’ve skied in the baltics. Those things are just gone from my life now.

My hobbies and interests are pretty much non existent now. Sometimes I’ll see someone (a stranger) doing something; say running or cycling and go “yeah I’d like a go at that” before the crushing reality that simply I can’t and likely won’t ever. Just a million activities closed off. Options; fun, interests, distractions just continually finding I’m against a never ending series of closed doors.

Similarly while I’ve persevered and work continues; my passion is lacking due to not being able to complete the clinical aspect which I loved so much . I often debate a new role or career but trying to find one that fits with one functional upper limb and slow lower limb puts me off even looking.

I’ve previously discussed food and how because food prep and cooking is near on impossible and eating not much better I’ve lost choices over what I eat and when.

I can’t eat out due to being unable to use cutlery. Hand held Street foods? Nope.

Ilive a small life of working what I can, being at home, rehab physio occasionally going for a walk or to the pub but that’s about it. It’s a far cry from pre stroke days of a job I adored with a huge clinical commitment running around , doing a hobby or activity pretty much every night of the week . Going out on a weekend. Travelling when and where we wanted and doing what we pleased.

My world was pulled inwards and I can’t fight to get it back out. it’s like being stuck in a bed sheet but more oppressive and added mental turmoil.

There’s no indication of
What we were meant to be
Sucking up to strangers
Throwing wishes to the sea

It can’t come quickly enough
And now you’ve spent your life
Waiting for this moment
And when you finally saw it come
It passed you by and
Left you so defeated

🎵- it can’t come quickly enough, scissor sisters – 2003

I forget how or why but I’ve recently had to really think about my house and why it’s my safe space.

I didn’t know at the time but I lived a fairly privileged childhood in a nice 3 bedroom house overlooking fields; where I’d spend my summers playing as a child, the house was in a small community. At 16 my parents moved us into a new build house a mile up the road, it was a large 4 bed detached house overlooking woodland; I was once again very fortunate to grow up there.

Me and Richard have lived in a variety of houses both rented and owned through our years together; my sister meanwhile landed on her feet and bought a very large 4 bedrooms house overlooking fields. I always knew I wanted a house for our kids to grow into adults in and with a nice view. I’ve long had a dream of having long lazy weekends where our adult kids (and partners) drift in and out as they please, we eat, open bottles of wine and it becomes a hub not a house.

In 2019 while browsing right move (it’s a hobby) I spotted a local 4 bed detached house overlooking fields. It was within our price range. We drove by it a few times Then booked a viewing; some small concerns over the location, but the house was large, modern and seemed great. On viewing , it was indeed large and the views incredible and due to the location super quiet nestled between woods and crop land it was quiet. the decor wasn’t to our tastes and it needed some freshening up. We put an offer in, it took a whole year to organise before we moved in April 2020 3 days before the country went into covid lockdown, it gave us time to clean, paint and plan.

Pretty soon we’d refreshed the hallway ripping up a heavily used carpet and replacing it with a warm oak. It always looks super welcoming like being welcomed by a sunny smile . I’ve got attractive lighting that features in the downstairs hallway ceiling lights, over stairs chandelier feature and landing wall Lights which tie the expansive and split level space together.

The kitchen had its first ever deep clean the day we moved in. We painted it pretty fast too, into clean colours. It’s a large space split between a U shape kitchen and open dining area, over time we put a pair of comfortable seats, side table, lamp and speaker to create a snug corner. As I can’t really cook post stroke I’ll often sit in the snug corner and talk to Rich while he cooks listening to music together.

Our living room has ended up an eclectic mix of mostly mid century modern inspired furniture but in my favourite colours.

My favourite few rooms of the house:

Our guest room. A ground floor double room that didn’t really have a function until we moved in. We frequently have friends to visit and stay so we painted, put new carpet, nice bedding and curtains in. I’m glad we did as it was where I slept for a while on my return from hospital summer 2023. It kept me on the ground floor as I wasn’t yet doing stairs and it gave me easy access to another favourite room:

The ‘big’ bathroom; as our house is essentially a dorma bungalow the main family bathroom is on the ground floor. It was created to a high standard. It’s a big space with an oversized bathtub that took me a while to learn to use again. A seperate large shower. Pedestal sink, the tiling is lovely and after placing a storage unit and nice mirror because a top space in the house.

Finally my ultimate room is the master bedroom (our bedroom). Upstairs, it gives great views over the surrounding fields and towards our local town centre. It was 10 years in the making (in my head) I remembered once seeing a wallpaper I loved, I forget where, but had never had a chance to action this. Until we got to this house, I managed to find it online and get it, it’s a deep Matt black with white silver birch tree trunks heading up the wall, the remaining walls are white.

We have a thick dark carpet and heavy black curtains. The odd bit of gold decoration makes it not too monochrome , one thing I will never compromise on is nice bedding, it’s currently white, pretty plain, with a white fur throw runner.

At night time with bedside lamps on and the curtains drawn it feels super cosy and dark which is what I always wanted. I really like to feel like I’ve closed the world out

While on my many weeks in hospital I longed for that bed and room, the feeling of being enveloped, silence, comfort, Rich next to me and the dog in the room both snoring.

Even when we got home and I was downstairs all I wanted was to get back to my bed and my room. I have a strong recollection of one of my physios helping me up the stairs and into the room. I looked out of the window soaking in my view then sat on the bed with the physio, she told me the room felt like “a supervillain lair” to which I responded “who says I’m not”. Even some 18 months onwards I relish getting into bed every night, appreciating everything: . To feel comfort, safe and happy is such a big thing.

I know people are usually house proud but I think I love my house. The things it means and stands for in my head.

Oh, home, let me come home
Home is whenever I’m with you
Oh, home, let me come home
Home is wherever I’m with you

• 🎶Home, Edward Sharpe and the magnetic zeros (2010)

I’ve never been a foodie but it didn’t stop me enjoying the foods I do like; I’ve historically been an ok cook, especially if it came in a pre done packet . Pre stroke I could get my way around a kitchen and make a half decent meal

I used to cook a mean Sunday roast, I had a good handle on joints of meat: pork and beef being my favourite to cook and eat, being a true Yorkshire man I had nailed Yorkshire puddings, they weren’t the prettiest but I could do them.

Even with some adapted cooking devices recommended by my OT, cooking and preparing food isn’t quite the same post stroke, it frustrates me.

The other big thing with food: eating out, I love and always have loved eating out.

I’m now incredibly wary of it though. I can’t use a knife and fork which is plain embarrassing, I’m wary of people noticing and thinking: I’ve either got no manners or am being lazy. if someone helps me (say Rich cutting a meal up) it’s embarrassing and infantilising. Instead I scour menus for finger foods, small plates and things that won’t need cutting, which is hugely limiting. Especially when what I really want is a big old steak.

Even if I stick with hand held foods it’s still not easy; have you tried eating a burger without both hands? It’s not happening.

Chicken wings are one of my all time favourite foods, but are an absolute ordeal to try with one hand, I persevere because I want them.

I’ve grown to resent meal times as they present stress and frustration rather than relaxation and enjoyment.

I eat less than I used to and what I do eat I can’t alway enjoy; fruit is pretty much a no-go aside from prepared fruit bags. it’s sad.

I’m aware I’ve had a few deep and darker blog posts recently, I’m hoping to have a much more positive one in a few weeks.

I have this past week spent a full day back in theatre, as staff not a patient . Long, long gone are my days of spending 8+ hours a day at an operating table. After a year of trying to find some middle ground in my role I have spent today being what I joked as ‘the queen mother’ to a complex surgical case in a speciality which I have some management responsibility for.

It got called the queen mother because I sat on a stool in the corner of an operating theatre dropping the occasional gem of knowledge, supportive word or dry humour (some things never change) and waiting for drinks to arrive seeing as I can’t carry one.

I was able to impart some wisdom across the team. The entire day I spent in there my non functional arm and hand strapped to me.

Using my working arm I did try to help on the odd occasion.

For the majority of the day I felt either in the way, surplus or envious that I couldn’t really participate. Before trudging out at the end.

It feels like a 20 year career wasted.

I had a history of being a great scrub practitioner, a fount of knowledge and willingness to do complex surgical work with complex people on complex patients, and you know what? I was bloody good at it. I won awards, I was thanked in published books, I was live streamed globally as part of a conference I helped organise.

At one point watching the team work it really hit me that my career was pretty much done. Yes we’ve adapted the role to use my knowledge but the biggest part of the role died along with that big section of my brain. I could have cried, no, I could have sobbed and screamed, theoretically I had another 30+ years ahead of me. I’d always expected to be scrubbed until the day I retired.

I could have done so much more, I was a high achiever, I feel like all that potential has been lost, squandered by ill-health as a consequence of other people’s actions.

Then as much as it makes me sad and quite bitter a little piece of me starts to think wider and think about my patients, staff, department and hospital and the impact me not being able to work clinically has had on those things.

Yes I’ll never know those hypothetical things and I know that I shouldn’t dwell on it but I feel it’s useful for me to recognise my health hasn’t just impacted me.

Sequal to follow

But I'm all in pieces, sick as all my secrets
Still now how they weigh on my mind
🎶- Still Waiting, Tim Chaplin, 2016

There’s lots of times in life where I need help: sometimes it’s little things like putting on a coat, opening a packet or buttering bread, other times it’s more significant like preparing food and driving me around.

I resent that this is how life is but here we are, as a very stubborn and independent person I sometimes find asking for help difficult. I become hyper aware that it and by extension, I, am a inconvenience for other people (their time, energy and emotion ) and if they get frustrated I find it incredibly difficult and hurtful, I’m already super critical of myself and feel embarrassed to ask all the time. So when we add more it just pains me further and I end up just not attempting things and stuck which adds frustration; there’s no good option here.

I never needed anybody’s help in any way
(Now) but now these days are gone (these days are gone)
I’m not so self assured 
(And now I find) now I find I’ve changed my mind 
And opened up the doors

🎶help – the Beatles 1965*

• I never thought I’d use a Beatles quote, but my library was low on help songs

My surgically acquired brain injury /cva / stroke (whatever you want to label it and I use all 3. Interchangeably) was May 23. Against all odds I returned to work, in a way, in march 24.

2024 brought its own challenges, especially December (link here) when cardiac wise I struggled again.

January 2025 with some strong armed brutal honesty that I sat and worked out I was committed to :

40 hours a week in work,

A voluntary role of sporadic commitment

5+ hours a week of commuting

5-10 hours a week of self led rehab in the gym

2 hours a week (on average) of health professional led rehab.

Real world things : food shops, cleaning, seeing family, going out. Plus things like life admin.

Agreeing that it was a lot for a person in good health; add a variable heart condition and continued recovery from a significant brain injury. I reluctantly agreed I was over stretching myself. My lifestyle hadn’t contributed to Decembers cardiac events but likely hadn’t helped.

With some honesty, deep reflection and compromise I’ve decided to drop a day at work and essentially go part time. I’ll be in work 3 set days a week , this means I get 2 weekday days off and I’m not trying to squash everything else into one day. I’m hoping I’ll use one day for rehab and have another as a very quiet relaxing down day.

Long time readers will know I had 3 big goals post stroke:

• Walking
• Driving
• Working.

On current reflection: I walk, pretty much ok, I can knock miles out.

I “can” drive with my adaptions just currently can’t legally because of my cardiac stuff.

I’ve already said I never went back to work fully. I couldn’t do the clinical activity nor some other roles I used to enjoy.

To drop a day because I need the time feels to me like I’ve failed, which when you’re stubborn and determined it’s a bit of a blow to the ego; I’d gone back to work to prove to myself and the world I was still capable and useful and I’m not sure that’s where I feel now.

However I completely see why I need to do this, my physical and mental health need to have a higher priority.

Cause I’m holding on
And I can’t let go
Yeah, we’re holding on
But the times are changing (but the times are changing)
When it took so long
Just for me to see (I know)
Still I’m holding on
But the times are changing

🎶 – times are changing Astrality and thandie 2022

I’ve somehow managed to set 2025 off to a bit of a flyer, not quite the start I’d anticipated with the hangover of 2024s end of year cardiac disaster.

While I’ve not been able to get to the gym and push gymhab as anticipated I did have one big day of renewed therapies.

I returned to the hydrotherapy pool, some 10 months after my last visit which had always been primarily leg based at that point.

The difference from then to now was like night and day, so much more shoulder (and some arm) activity. The hydro assistant noted my nice movement and even speed in the water. It felt great, I loved someone else noticing the same as me; I think having someone else note it is a reassurance and huge boost.

Later that day I met with a new private physio: S2 who is new to the local area, we’d had some bits of communication beforehand and he told me he’d read a lot of my blog to get a feel for me before we met, it was great to enter into a new relationship with someone who had a good idea about me, I often get bored of repeating my health history.

S2 was full of ideas and testing what I could do. My favourite being when I told him I had zero bicep movement and then with minimal assistance got a decent movement “you’ve lied to me Ben you have got movement there” I did a little embarrassed giggle.

We followed up after the session with some communication together during which S2 said there is definite potential to continue and develop. I’ve taken that small bicep movement and elbow flexion and kept repeating it, remembering my entire leg movement came from a toe wiggle

The following day after big physio I had a chat with a wise person who told me I was doing “ all the right things.”not just in physio but my wider goals and tasks too.

I sometimes, in fact I regularly, need those positive words and encouragement. There’s only so often I can tell myself it’s going to be ok without other people joining in, I especially appreciate if they are professionals in their areas and people I respect

Sometimes just one drop is all it takes
One drop is all that it takes
See the ripples, watch them turn to waves
Right before your eyes
You never know who it might touch
And soon it might be all of us
Maybe there’s a world that you can change
So start a wave

• Start a wave – Cody fry

This one has sat in drafts for a long time, it’s taken a snow day for me to thrash it out and publish; enjoy.

Learning

Like most late teens in the uk I applied for my provisional licence aged 17 and started lessons funded by my parents. It was however a slow process. Multiple tests before I passed too.

I bought my own first car aged 18 it wasn’t anything special but it trundled me to work and back and gave me freedom, on reflection, the car was rubbish (to go uphill the air con couldn’t be on) but it lasted me a few years. I further got a small Japanese 3 door while with Rich that was still slightly bigger than his car so became our primary vehicle.

I was a good driver: calm, logical and confident. Rich has always found driving stressful so for most of our relationship I’ve been the driver and him navigator and we’ve certainly put some miles in over the years.

As my car was slowly becoming an issue my mum donated an old car of hers that was similar in size which was fine as a car but it never gave me a joy.

Around this time was when I joined my current employer, in my team everyone had expensive, premium cars a through a heavily discounted work scheme. I joined up getting a big Mercedes which was completely unnecessary but fun to drive and I loved the prestige with it.

3 years on and it was time to return the merc , with carte Blanche choice I decided to order something premium, cool, a bit different and very “Ben” and selected a Cupra Formentor, a car new to the uk market, petrol hybrid as it seemed logical to me to run on electric for commutes and have petrol for longer drives.i ordered this in 2021. It was delayed, delayed and delayed again up to 2023 when it was delivered in April. It was everything I wanted and more, fun to drive, economical, full of tech and looked amazing

I had 5 weeks of driving it before the stroke. Though Rich drove it for a long time afterwards.

I remember sitting in my hospital bed in hospital 3 thinking i would never drive again and the limitations that implied: how would i get to work? How do we go out? Would i be relying on other people as a burden for life?

One of my OTs assured me many people had gone before me and it might not be the same but I would drive again.

After coming home one of the OTs linked me with a local disabled driving centre.

I gave up the cupra as it was expensive and a tease that I couldn’t drive it. Rich continued to drive it until it went as it was big, lovely and fun to drive

After waiting months for an assessment in late 2023 I began pushing the driving centre to help.

I got a provisional date of February 2024 for an assessment which timed nicely with a planned work return in march. After putting research in and not wanting to be stuck waiting for a car delivery (plus knowing I was entitled to a car on the government motorbility scheme) I decided to pre empt the assessment and order a car; if I didn’t get my license back Rich could drive it.

We spent that weird week between Christmas and new year driving to car show rooms. The first choice had a huge build and delivery time. My second choice car was a small electric Peugeot, I wanted a small car to start driving again, feeling anxious. Electric made sense to me as I didn’t plan on any long drives and on enquiry it was 9 week delivery. I ordered there and then aware I’d likely have to update my order for any adaptions, assured it was no issue.

Suddenly it was February and assessment time, I had no idea how it would go. I had my assessment on a Wednesday afternoon. The morning I went to disabled gym group with dad as usual on a Wednesday. As I left the same car as I had ordered pulled up with a young man getting out. I gently asked to look at his car explaining I was due my assessment that afternoon and ordered the same , he kindly showed me his adaptations that meant he didn’t need go use pedals. He wished me luck as I left.

After a lunch with my dad we drove to the assessment centre where I was incredibly nervous; it was all new and felt very important with work seemingly hinging on it.

I was taken to an interview room where some driving history, physical movement demonstrations and a cognitive assessment completed by a driving instructor and OT. We then went to a car where I was shown a variety of driving adaptations. From research I had worked out I’d be fine with pedals on an automatic but secondary hand controls (indicators, wipers etc) would need adjusting.

The instructor was achap named Dave and quickly set me up a lollipop/ joystick that attached to the wheel was comfortable to hold it had buttons for the above functions and more. When he told me to drive out of the car park I did have a slight twinge of panic; it felt weird, I didn’t like it, but focused on the importance of doing it What followed was a 45 minute drive around the area near the centre, some manoeuvres, different speeds, roundabouts, etc etc. what was nice was Dave and the OT were very personable. It eventually felt very natural to be driving and chatting. I did slightly knock a curb at one point and thought I’d ruined my chances but on return to the centre I was told I’d passed the assessment, I’d need the same adaption joystick fitting to my new car and a few hours consolidation with the joystick before they would send the Driving authority a letter confirming I was ok to drive with the adaptions.

The consolidation hours had to be with the exact same joystick, with a specialist instructor, they gave me a link to find these instructors, my local one happened to be Dave the assessor which was some great serendipity; I liked him, we’d built up a nice rapport, he knew exactly what I needed and I wasn’t having to tell my story again with someone new yet again

I did the few hours with Dave, the sessions flew by, we had a lot in common and he was a nice guy, we did dry runs to my work, local shops etc to give me some familiarity.

I’d organised adaptions of the joystick to be installed on the car so at the end of Feb when we went to collect the car it was ready for me to drive straight out of the showroom. Perfect.

It’s a cute car, possibly a bit on the small side, but just goes. The tech is pretty good, it’s not the cupra but it’s fine for what it is.