Stroke and mirrors

I had a hypothetical conversation with my husband over the weekend where we talked about what we would do if we received a significant amount of money, say a lottery win (we’re really overdue some good luck) beyond the basics of paying mortgages and debts off and nice holidays, Caribbean fly cruise if you’re interested, the usual stuff; we talked about health things I’d try if we could.

I have seen, multiple times, a device called a myopro robotic arm orthotic. Essentially an exoskeleton brace that uses nerve signals then provides the movement to match, it would provide a significant upturn in quality of life by allowing me to do more functional tasks like cooking, shopping, which then eventually lead to neuroplasticity. Short term quality of life increase with potential long term benefit; I’m on board

It doesn’t use implanted sensors or electrical stimulation so is one of the very few advanced rehab devices I can use safely.

The price is circa £40,000 plus it needs specialist physiotherapy intervention to train with it. Roughly another £6,000.

Beyond that I have, for a long time, read about the healing properties of stem cell treatments, I have pretty heavily researched it and would like to try a company named bioexcellerator based in Columbia. They combine stem cell therapy with other treatments all based in one centre with a hotel and appear to have a great track record. I’ve never gone as far as looking at pricing but would expect it around £30,000 too. Plus some significant travel costs to get to Colombia.

I’d love to get regular physio led by a physiotherapist not myself; I can and do pick up a lot from the physios and try to build things into my routine but high quality 1:1 physio is something significantly lacking. I do have an nhs community based physio but I’m only allowed one hour per month. My favourite physio I ever encountered was a private one just over 20 miles away, I’d love to be able to get weekly sessions with them. It’s circa £200 a session though so I can’t currently spend that much of our money every month.

Hi, just stopping by because it’s been a hot minute since I Did an update, ok it’s barely 2 weeks but I’ve had messages asking if I’m ok which is sweet, thanks.

Don’t panic, the recent surgery / defib implant went super well and I’m recovering very well but I really tried giving myself some good recovery time, rehab work has had to paule for a few weeks so I’ve not had much to update.

But I’m definitely still 100% here. Feeling very, very good in myself; surgical sites looking pretty bloody cool, it’s small and tidy , we’ve been doing lots of regular things like eating out, shopping, drinking and working (not all together, mind).

I think the upswing in my mood knowing surgery is done and went well is huge, I’m very happy . I’m even plowing through some of my drafts and part finished posts, there might be a flurry of activity on here soon. Please don’t forget if I’m not on the blog regular I’m on My instagram and threads I’m even good with responding to messages on those too.

Hoping my readers, friends etc are all happy and healthy too

B x

Not sponsored or endorsed, but if alpaka see this please feel free to reach out via the contact me page.

When in early 2024 just under a year since my stroke I /we were giving serious thought to returning to work in some capacity. I was driving and had my adapted car so that was one issue covered. While I knew I couldn’t do clinical work anymore there was a big chunk of my role that was management based and I could do that both on and off site to start, we even built me a little home office space which I took great joy in filling with trinkets. I’d covered getting into work. Clothing wasn’t an issue for now, I could wear my own clothes to start with and order some scrubs with elastic waist not a tie string, tops would be fine. Keeping on track with essentials: food. Pre stroke I would walk to the canteen, grab something or if I had time run down to a local shop or sandwich place. These options were now gone: speed of moving and carrying both not fitting.

So I would take lunch with me, if Rich made me a sandwich. A few months prior to my return when speaking with an Occupational Therapist about the return they recommended a cross body bag to carry things. I set a challenge to my family, find me a cross body bag, easy to open with one arm . Claire came through at Christmas with a great bag, fitting the brief perfectly.

It wasn’t until a couple of weeks of use that I noticed it was on the small side. If I had lunch I couldn’t carry things like my work iPad or a notebook. So I set about looking for something a bit bigger. After chatting with my team someone suggested a tote style bag: large, goes over one arm/ shoulder, wide opening.

However they are traditionally made tfor women. So I set about looking for a masculine version.

I somehow fell across a brand called Alpaka who make a series of different bags and accessories, masculine and pretty cool too.

I ordered their tote. When it came I was thrilled. It’s big, big enough to even fit my MacBook if I wanted, plenty of pockets on both the inside and out none of which are stitched, zipped etc so super easy to get in with one hand. The main compartment does close with a magnet which is fine. It’s a really thick high quality water resistant material and the dark blue looks masculine and classy.

I was so thrilled with it that I spent time looking for other products they sold. Doing a large amount of self guided physio in gyms has lead to a lot of headphone wearing. I would always put them around my neck as I was leaving the house but aware they were loose and expensive.

Alpaka do make a tech bag primarily for headphones, I ordered one in a nice deep green; it has a strap or a carry handle so I can always carry it somehow. Inside there’s a deep pocket perfect for my headphones (I wear Beats Pro for size reference) it’s got a couple of small pouches in the front and back one I keep a charging cable in, just in case, again accessible with one arm.

Appalka certainly didn’t design these products for people with limb issues but it’s a great by product for them and one I’m very happy to recommend.

Alpaka website

My tote bag

Headphone case

Note: this is the first true ‘live’ blog I’ve ever written as in: no reviews, no proofreads, no edits before publishing.

I’ve put in previous posts (linkage please) how we knew more surgery was coming in summer 24 and it would be a ooner rather than later.

I got the call during work (did I post this? If so link please)

I planned my week knowing surgery was a Friday morning with a pre night stay and 5pm admission on the Thursday.

I worked Monday. In the evening me and Rich went out for a fat carvery, because everyone needs carbs in times like this.

Tuesday I worked then had dinner at home with the family, I quite fancied a night moping and drinking beer but I didn’t have much beer in ( silly man) and still can’t get into a shop alone and get out. But I did have a quiet evening mostly alone with my headphones on and the dog watching over me.

Wednesday was my day off. I was glad I didn’t drink much more because I had a gym session and still needed to get up. I went and found the gym I used with the disabled group had finished a refurb and was a lovely space now with all new kit, frustratingly most beyond my use though. I did get a great leg work out in and a little bit of upper physio based movement.

Afterwards I had lunch with both of my parents, later me and mum nipped to the shop so I could grab dinner and some last minute hospital things (sweets).

Later on I had a full physio session where my new physio really challenged me on things like balance and stairs of different heights. Probably not ideal after a gym session in the morning.

I “packed” my hospital bag by which I mean I put stuff on the bed next to my empty bag for Rich to sort. Come the evening I had a nice dinner with lots of carbs, I fancied getting a bottle of wine in me but thought better of it.

I went to bed expecting to be asleep in seconds, sadly not, when Richard’s alarm went off at 5 I was already awake and googling the million things in my brain. I got up just before my 6:30 alarm for the first time in my life.

I went into work, spent the morning with my team, drinking tea, eating ice creams and actually having an enjoyable time despite the chaos in my head and tiredness.

All my team were very gentle with me and aware I was worried. I finished at lunch time with lots of hugs and left for home planning: lunch, a nap, pack my last bits then leave about 2:30 when Rich was free from work to drive.

I got home and did eat and pack, had a bit of a panic poo, no nap but Rich was free a tad earlier so we set off. The drive pretty uneventful but I did note the odd stray tear escaping down my face; essentially pure fear.

We arrived 2 hours before the admission time, waiting for admission and a bed. Bits happened but slowly and sparodically, around 5pm I was offered a meal on the ward but me and Rich decided to head to the coffee shop and have a last dinner together. Nothing exciting. But it was distracting if nothing else.

On return I got a bed. Unpacked my bag and settled in. My cardiac surgeon who I’ve met multiple times before came for a chat, noted my apparent facial concerns but we talked through the procedure again, wrote a consent form and planned the morning. he’d promised all along I would be able to speak to the anaesthetist and good to his word one appeared; I talked through my previous surgical experience and that in my opinion if neurological observations had been done early on in my recovery the stroke could have been treated. He understood my concerns and quickly thought of a care plan for me while I was his patient; it offered me great reassurance.

Rich left about 7, I didn’t want him to leave, it all felt like the nights apart we had last year, I watched his iPhone tracking marker get further and further away until I could see him home. I eventually tried to lay down and sleep but it evaded me once again.

Around 5am I decided to start getting ready for surgery, I acquired a hospital gown and mostly changed my clothing, packed my stuff away and then sat and watched the sun rise.

I went to theatre just before 9, insisting on walking myself, I chatted with the team while having monitoring fitted. The anaesthetic started and my next memory is the recovery area. 2 nice practitioners talking to me, I was desperately trying to ask if the surgery had gone well and if my chest had been opened. Yes and no I was assured. My throat was sore and I was dry, I tried to sit up but was promptly told to lay back down, my blood pressure was low. I looked at the monitor just in my eyeline and could see the monitor and Indeed my BP was low, I could see the team preparing fluid to help increase it. What was nice was being awake enough to note the rough time. Be aware some neurological observations were being done and do my own little bits like moving my affected side to check I could still do that. I saw the time on the monitor as 12:30 and asked if Rich could be phoned. One of The nice practitioners phoned him while stood beside me relayed a said he was out walking the dog and would come up once back home.

I was brightly awake pretty fast, mainly because I was desperate for a wee after being pumped full of fluid, trying to wee in a a urine bottle (yuck, yes them again) without sitting up and being at a weird angle is very difficult. I was also hungry, a nice nurse made me some toast and tea, she sat with me and ate some toast too. around this time my cardiac consultant came through, told me it had all gone as planned and he was pleased, he gave me a shoulder squeeze and I turned into a puddle at the kindness.

I was listening to the room , because there was nothing else to listen to, to their coordinator accepting some out of hospital cardiac patients, 2 from similarly named places and listening to the plans of which theatre / lab each would go to and why, which fits well with a job I’ve done for over five years, my awareness turned out to be of benefit as the expected first patient was delayed so the second arrived and there was confusion where they were going I leaned myself over the bed rail “actually he’s going to lab X if he’s the patient from Y because the other team have all gone for lunch” the coordinator laughed and was thrilled I’d pointed out the mistake that almost happened. It was agreed in my very awake state I could return to my ward bed space and see Rich, I was wheeled there on the bed and could see Rich sat waiting for me. It had only been about 18 hours since I’d seen him but it felt a lifetime, I could have cried just seeing a fleeting glimpse of his face.

The afternoon plodded on bookended by: naps,Wound checks, monitoring and some very invested cardiac physiologists. I asked when I could go and it was a mixed bag: I’d eaten✅drunk✅ had a wee✅ just a little walk and chest Xray before a rough 6pm discharge. At 4:45 I walked myself down the ward, slightly wobblier than usual, to the toilet, had a wee and walked back at which point I was taken for my Xray. By the time I returned it had been reviewed and with a bundle of paperwork instructions and records i was safe to leave at bang on 6. We were home just before 7. By 9 I had a beer, on the sofa, dog laid near us, chatting away like a usual Friday. Zero pain or issue.

Come Saturday, I’d woken once in the night when my affected arm rolled off the bed instantly pulling on the new surgical site but settled shortly afterwards. I snoozed the morning away. We should have spent the weekend at my longest ( by which I mean longest known) friend’s house with his lovely wife and children, but this had been aborted the previous week. Instead they would spend the weekend with his parents in the same village as us, we’d catch up at our house or in a pub depending on my needs. Around 11:30 I got up, Rich helping me delicately clean and dress, we agreed to meet in the pub at 2. Feeling spirited I offered to walk but Rich wanted to drive (likely wise) we had 2 hours of catching up, hugs, food and even beer, I felt great, after the pub we had a quick supermarket trip then home. A relaxed night on the sofa followed.

Sunday was another slow morning but this time with a bit more pain, Rich helped me wash and dress again. The bruising on my chest starting to come up and look pretty vicious. I had woken up still with a sore throat now joined by a very runny nose and sneezes.

After lunch me and Rich went for a walk to the big garden centre to buy a couple of replacement plants for our patio and had tea and cake while there. my cold like symptoms continued through the day and getting worse come evening. I suspect after a stressful few weeks and all on assault my body has done a great big sigh of relief and some bacteria has gone wild in celebration.

(I wanted a wittier RuPaul title but here we are).

I’ve posted before that I’m waiting for more cardiac surgery and how in the end despite my protests I’d been forced into it, I’m not safe without it. I haven’t got a choice of just ignoring it, like so many things in my life I’ve got to just deal with it.

We’ve been waiting a while for confirmation of when it was going to happen , it was always a mid scale timing (weeks not months) today the call came; I was in work, and it’s booked in for a weeks time. I can’t tell some poor admin person I need to pause the call to vomit with nerves. So I listened to the instructions and pretended to be grateful they phoned.

I quickly (well, as fast as I can) left my office and sat outside in the sun, phoned Rich with an update then text my family.

I phoned my boss too who came for a chat with me; the first person to ask if I was ok. Forever the brave face I said yes I was just having a minute to process and speak with my family which he respected and left me alone which I really appreciated.

If im honest i am absolutely scared to death about this; im not happy about handing my already damaged carcass over to possibly risk a slightly better outcome. I’ve played this game before and it didn’t end well.

I’m tired of constant stress and worry and seeing my loved ones deal with the same; permanently feeling like I’m the cause of their worry just adds to mine.

Someone joked I’ll bail on the day of surgery and it’s planted a seeed; I’m mentally preparing an escape route if I need.

I’ve done my best defending But the punches are starting to land
I’m sliding into something
You won’t understand – 🎶rut, the killers

I have never wanted to visit a festival; I won’t camp, I like hotels, nice beds, bathrooms, nice bars / lounges. While I can fully imagine and appreciate the atmosphere of watching a band with a huge amount of people must be electric, I’m happier on my sofa with a beer. Choosing who to watch and when, being able to nip to the clean loo when I want and afterwards get in my large bed with super comfortable mattress, expensive clean bedding and sleep soundly.

For as long as I can remember, we have always made a bit of a point of watching Glastonbury together (me and rich).

2023 was a different year, I was in hospital 3, just about standing with lots of help but not walking by any means.

We spent 2 nights with me laid in bed pretty much immobile, Rich sat in an armchair next to my bed, with my iPad propped up on the bed table, watching Glastonbury together. I remember crying because all I wanted was to be at home on the sofa instead and it felt a world away and would never happen again

Come 2024 and I’m home, walking miles, working and doing lots of pretty regular things. Saturday of Glastonbury I spent the day with my parents at a music festival (the irony was not lost on me) but just a day festival with bands on a field. My dad’s band were one of the acts and the weather ok so me and mum went along to watch. I’d sat on a picnic blanket, had a couple of pints, avoided the toilets and saw a couple of bands, we then left. I came home, me and Rich sat on the sofa together with beer, the dog and watched a couple of Glastonbury bands. I did have a stray little tear on life feeling good.

The below photo came up on my phone yesterday (22nd June) as a ‘one year ago today’ photo; I’ve talked about this iPhone feature before (link here please) and my love/hate with it.

This specific photo has some memories attached to it, I posted it on my instagram but wanted to expand a little more and I have the blog so here we go:

This photo was taken 6 weeks after my stroke, I’d already been through high level care, one stroke unit and recently transferred to hospital 3 the one closest to home and my family. I was unable to walk, standing was just about happening, so I was reliant on being pushed in a wheelchair, my parents would take me to the hospital entrance for drinks in the coffee shop, and for me to watch the characters, it was always entertaining.

This lift ride was the first time I’d seen a mirror since the stroke and really sat and looked at myself. All I could think was how tired, pale and ill I looked. I’d gone into the stroke the physically fittest I’d ever been, heavy, with a lot of muscle and some fat, I’d put a lot of weight on the start of the year, mostly from the gym. I had a good barber so my hair looked nice, I would do the odd sunbed session too, I had, admittedly, got a bit vain.

I remember looking at myself in the mirror and initially not recognising who was looking back at me. “Who is he?!” I tried smiling, making faces and pulling my cheek around to make me look more normal but it didn’t work, I had already started to accept I’d lost a lot of my life but to not even look like me was disturbing. I remember holding my breath while the lift moved and when I was wheeled out did the biggest breath intake followed by a sob; I was crushed; it’s a good job I couldn’t walk or run because I think I’d have been found laid on the road near the hospital.

My physio and OT team had started giving me facial exercises and quite quickly my face began to recover and look much more like me.

So a year down the line, it’s worth recognising I now look much better, my facial muscles returned fully and I have zero droop. My hair normally looks good, I can’t tan anymore and while I’m still lacking the muscle bulk I had, I’ve put weight back on and look healthy which is pretty much all I can ask for. Plus it inspires content like this win/win.

One of the posts on here that continually gets views and responses is my dark thoughts (link) post.

I’ve also had 2 individuals reach out and say they were having their down days or periods and asked what do I do when I need to combat those feelings.

I signposted those people to appropriate services for them such as

Samaritans

Same you

Link

Link

And it spurred me to think what do I actually do when I’m abit low?

My darker days tend to go hand in hand with when I’m tired. So my first thing is to mentally say “ok I’m struggling and feeling flat ” letting myself recognise it.

I then try to plan my next few days and focus on a particular day (say a Saturday or day off) especially if I know I won’t be working or at a rehab appointment. I don’t agree to any big plans; for this example let’s say it’s a Saturday

Friday evening I’ll leave work and make a clear mental point while driving home to say that’s done for now and box it off. As a couple me and Rich have wine and tv time on a Friday to wind the week down; we always have, nb: only drink alcohol if you can.

I’ll go to bed, intentionally not set an alarm and just accept I might not see the AM hours on Saturday, I’m going to let my body sleep and rest until it’s done.

I’ll get up on Saturday; shower and intentionally dress myself in clothes that make me feel nice, then more often than not spend time with my parents, sister and her children; there’s nothing like an exposure to children to spread positive energy. I get spoilt by my mum with my favourite foods: fresh bread with cheese or strong cheese spread. Cake, gallons of tea.

Me and Rich might do some clothes browsing or possibly go to the pub

Once home we tend to have a laid back family meal of pizza and grazing bits together.

Come the evening I’ll catch up on tv or YouTube.

In the evening possibly/ probably more wine or beer and just chatting with Rich.

I have an incredible support network, if I put in my group chat with my best friends that I’m feeling low they will always respond and check on me.

Recently I’d been in work and a friend recognised I was struggling and having a low day , without asking he went to the shop bought me a bottle of pop, brought it to my office and hugged me from behind and said “don’t worry you’re doing amazing” the fact they had recognised it without me saying and done nice things was such a nice touch.

I’ll tell my husband if I’m struggling too. We can talk it through. He’ll remind me of the progress I’ve made, talk about how I never expected to make much progress and point out upcoming plans to be excited about.

Sometimes I’ll get some free time in an afternoon after work and use that for some self time. A cup of tea, tv, nice biscuits and I feel better for those small things

Lots of small things can be as good as one or two big ones

There’s been trials and tribulations
You know I’ve had my share
But I’ve climbed the mountain, I’ve crossed the river
And I’m almost there, I’m almost there, I’m almost there🎶almost there – Anika Noni Rose (from princess and the frog)

I’m aware that Autonomic Dysfunction is a thing post stroke where your body’s essentially automatic responses don’t work as well as they should because the nerve pathways are damaged; mine display as:

– runny nose, I don’t go far without a tissue or many minutes without needing one. This is apparently very common. Its very annoying too.

– temperature regulation, I’ve always been on the warm side and happy knocking about in shorts and a tee shirt all year round. I now find if I wear layers I get too warm very quickly and layers aren’t easy for me to remove either so I just get hot, bothered and frustrated.

I’ve never been a sweaty person, I could work a ten hour day, topped off with 2+ hours of gymnastics and not sweat a drop. I would always shower but I never had that sweaty smell, because of the heat regulation Autonomic Dysfunction I sometimes wake up in a morning and find I need a wash quickly to freshen up, this is all new post stroke, I really dislike it too.

Fight/ flight responses, I sometimes find just being an a certain scenario makes me very anxious and desperate to leave, it displays as a tight chest, feeling of unease and almost panic I’ll try to leave quickly, but nothing is quick is it

Dry lips; I’m not quite sure why this one is different now but my lips always feel dry, on my work desk, home desk, living room side table and car I keep lip moisturisers to try and help. Maybe I need to drink more, especially water but water bottles remain a challenge; especially in work.

I’m aware some post stroke survivors have a lot of speech impact, whether losing the physical ability to speak, the mental ability to communicate or otherwise; I have always been able to talk, however to regain power, volume and tone took input from a speech and language therapist (L – the loveliest person who at one point said we could visit a pub to test my voice in loud environments, but it just wasn’t meant to be.)

I do get the odd flash of anomic aphasia where the incorrect word appears, usually if I’m rushing to speak, busy or a little under pressure and tired or sometimes the word just isn’t there anymore.

Mostly it comes out as something silly and I laugh so here’s some great examples of when it’s popped up.

Telling my mum about an interior design show where they decorated ‘a nuns coven’ not a Covent but a witches coven; it was close, but not there, a couple of letters out, mine was funnier; depending on your religious views.

“I got up, went for a wee, it’s dark out so I’ve closed the window” I’d closed the curtains, close in location physically and in the same world of words but not what I meant.

My absolute favourite needs a little backstory:

Our (mine and Rich’s) bedroom, is actually a big room, imagine I’m in the bed, if you stood at the bottom I’d be on the right. At the foot of our bed are 2 huge built in wardrobes with rolling mirrored doors that reveal 2 big drawer units, a full height set of shelves, 3 hanging rails, these are “mine” to the opposite side of the bed are 2 doors: one to our en-suite, the other is Richard’s walk in wardrobe with 2 chest of drawers , a couple of hanging rails and shelves too, with such little upper limb movement I can’t get involved in laundry stuff.

One Saturday morning I was dosing in bed. Rich was putting clothes away for us both “Ben were both out of space, again” he told me, half asleep I opened my eyes. “Ok let’s have a clothes ceasefire and put some in a charity bag” I had meant amnesty and I’m adamant it was in the same world I just got the wrong one; weeks later neither of us has got rid of a single item.

While in a shop with my mum I saw some drinking glasses I liked the look of, see below

I’d spotted these and my brain pulled the wrong word “I like those effervescent wine glasses” the word I wanted was iridescent, I wasn’t far off and my mum knew what I meant.

My favourite example of aphasia is a work related one we use a small metal stick that hammers kidney stones on a pneumatic hand piece, the diameter of the stick is 1mm, while trying to get a replacement I was offered a 4mm alternative “wow that’s massive, we could dig up the road like a John hammer” no, Ben, you mean jack hammer. The team I was telling found it funny and understood the point I was making.

Shortly afterwards I decided I was done and needed to go home and switch my brain off for a while.

Watching Grand designs with some mega McMansion all white, lots of cars when the camera went over the top of the property “oh and look the ubiquitous hot tub” was what I wanted to say but got “oh look the uniquity hot tub” was what came out. Rich just looked at me not knowing what word I was trying to use, after some googling I found it.

Published June 2024 – I may add further anecdotes in the future.

August 24 while meeting with someone at work and talking about how I ensure the team I manage got the information I said I’ll decimate my staff when I meant I’ll disseminate to my staff. It’s close but drastically changed the tone