Stroke and mirrors

6/7 months post stroke having been home 4 and a bit.

My ‘therapy team’ of physios and OTs from hospital days have continued with me to this point but keep warning me the end is nigh, hydro officially stops very soon, beyond that it’s all just ‘we will finish soon’ there is a community Neuro rehab team I can go to, I met their lead practitioner a while ago and he was, frankly, rude. He ignored me and spoke to his laptop during our session that was meant to be focusing on my arm, he said that wasn’t the aim of the session and got quite defensive about it, I think whatever his plans for me where I wasn’t fitting into that box and he didn’t like it, he left with one job (to order a splint for nighttime wear) but he never did this.

I today got a text out of the blue from that team about a referral by a medic I knew nothing about, after questioning it, he called back again defensive and unhappy, he implied I knew about the referral but had just forgotten, I haven’t. He was lying.

My medical doctor consultant phoned today, we had a scheduled call for tomorrow but he was free so did it today. He said he was happy to hear me speaking so well, thrilled to know I was walking independently and long distances too. I explained my arm was still very much not working, he couldn’t add much apart from the longer post stroke the harder it is to return (thanks for that boost of enthusiasm and confidence) he was discharging me from the medical side of things, but to continue with physio long term while I could

I got to thinking what will that look like? If I refuse to go to the community team after so far finding them rude, unorganised, aggressive and lying. Where does that leave me?

I’m starting to feel a bit like I’m going to be abandoned.

Just after the 6 month mark I’ve had the busiest week so far, lots of nice things, new normals and old things coming back.

My parents were on holiday so my fall back for lifts, trips out etc was gone.

Monday – new sports based physio / massage, rich was busy with work so I got in an Uber on my own to a new place, not the most friendly building in terms of access (lots of stairs without handrails) new people to meet and talk with, taxi home too, a good independent day. Another time I’ll post about the treatment I’m getting there.

Tuesday Christmas shopping round the big shopping centre with Claire then usual physio at rehab centre, rich busy with work again so Claire dropped me off, we went in the rehab gym doing lots of leg strengthening, I’d walked a mile before physio. After physio I tried to get an Uber but traffic was bad so surge pricing kicked in and would be 40 mins to get to me, with my new travel pass in hand I decided today was a day to try travelling alone, set off walking from rehab to the bus stop, turned out the bus stop was no longer in use, so walked to the next one and additional 40 mins of walking post physio. The screen at the bus stop told me the only bus was major delayed due to traffic, ugh. I tried a taxi again but no luck, thankfully Claire had finished the school run and came to rescue me. It took us 40 mins to do a 10min journey but in a bonus I got to see my niece and nephew while In the car

Wednesday disabled gym group, Rich took me for the first time, lots of cardio time, leg strength exercises and a tiny bit of upper, when it played, after group me and Rich nipped to another shopping centre to just grab some bits for lunch.

Wednesday night me and Rich went to our new gym, I did a bit of time on the treadmill, we did some pool /hydro together then a dip in the hot tub, sauna and steam room.

Thursday I was wiped out in the morning, 2 gym session in a day was clearly a bit much. Thursday afternoon I had proper hydro with the physio at the rehab centre, then a big shop round the big shop.

Friday me and my sister went out again (thankfully I was able to get up that morning) we went to the big garden centre looking at Christmas stuff, had a coffee and cake then drove down to the old mining village to buy some gifts from a specific shop there, we stumbled upon a giant tipi set up for for Christmas with a bar and fires inside, very on brand for my tastes, so we had a lunchtime wine. Then home.

Saturday I needed another sleepy rest day, the week has absolutely done me in.

Sunday, again pretty lazy, but afternoon, me and Rich went to our new gym again, treadmill, bike, leg strengthening then pool/hydro, hot tub, sauna and steam.

Next week is looking busy too but not as busy

It’s been exactly 6 months since I surrendered myself to the surgery that led to the accidental stroke ; it’s always referred to as a cerebro vascular accident, I hate that phrase as it simplifies and downplays the catastrophic event on not just me but my family

Me and my husband last night made a trip to the pub, just us, which two months ago wouldn’t have been an option. We discussed the last six months in detail.

We started at the start and my poor memory of early events, I’ve got vivid recollection of being in the recovery room unable to move or speak and being angry about it beyond that there’s a blank space for a while like someone deleted that section of my memory ,I’ve lost the rest of initial recovery, the intensive care stay and first ward, my psychiatrist said it was likely ptsd and my brain just decided it was all too traumatic so ‘stopped recording’ I love that analogy Liz thank you.

I pretty much remember every part of my long stay recovery unit though, the Saturday night ambulance transfer there. The ward tour on a stretcher, the lovely staff, the rehab starting the Sunday morning with a beautiful physio ‘S’ sitting me up in bed and my core being so week I couldn’t sit up and balance and I fell on her ‘it’s like being so drunk you hold on the carpet to stop the room spinning’

I remember every staff member and have an anecdote for each of them too, I also remember each visitor I had, learning how to use a toilet again, being so angry that standing took such a long time to learn the repetition didn’t help and then steps taking even longer but I did have steps there (post here) which led to my chaotic discharge.

Home with moving and handling equipment for Rich to drag me round the house, initially having carers to help me get up and wash in a morning and make me food, an electric wheelchair to get out, the hiking pole which was a mental and physical support for a while

Our first family meal together. My birthday drinks with my house full of friends and family.

My first pub visit, my first walk, our first weekend away.

I remember most of these things very vividly (my brain was back on record mode).

I now: walk independently for up to 2 miles a day quite happily, in and outdoors, surfaces not being an issue I’ve walked my dog, we go out shopping, I see friends, I go to an adapted gym (for now) and continue all my therapies plus continually search for more. I start another next week.

We recently sent back the electric wheelcgair, shower chair and perching stool, I just didn’t need them anymore and they were reminders of a worse time plus taking up a lot of space in our guest room

Life’s come back kind of fast, I wouldn’t have done it without my gorgeous husband by my side, my parents constant encouragement. Adhoc physio, driving me around And any friends who have been by my side thank you all so much my day one lovelies. Kindness, support and love have been half this journey.

The next six months I’m devoting to my arm function and my ‘strokeiverssary’ in May 24will be spent on a cruise sailing back to the uk in the North Sea. Let’s see how that day goes.

Keep reading and thanks for your emails. Ig messages and clicks. I’ll likely do a 9 month update too.

Ben x

I realise I’ve done a few mardy (Yorkshire slang for grumpy /sad) posts so wanted a good one.

I had a wonderful Wednesday

Set my alarms for 8:30 and was able to get myself out of bed pushing past the current fatigue / apathy in a morning that can sometimes take 2-3 hours to push through. But I had a disabled gym session which I really like and dad was taking me which I like too, we get a bit of 1:1 time in the car and he plays football while I gym so it’s not just people driving and waiting for me.

I got up, showered and ready for gym in time for dad to collect me which is no quick feat but was done. Gym was a great session. Seeing strength improvements on all the leg machines: press, curl, extension, abductor and adductor. I did a 10 min cycle and 10 min moderate walk on the treadmill too, my highlight was walking across the gym to a piece of kit and singing to the music, I passed a fellow stroke survivor who had seen and heard me approaching and joined in singing with me, walking along the gym together, silly but very nice; I love the group there everyone is supportive and nice. I even found I could do a little more with my affected arm (it joins in on a chest press and hand bike too) and I mostly manage to keep it in place.

After that we went to dad’s house for lunch, mum did some hand physio and we almost got a pinching movement between index finger and thumb as in they moved towards each other at the same time. Encouraging if not quite there yet.

After me and mum did a little supermarket shop, I’m good with pushing a trolley now would be better if I could let go of it on demand not just grab it until I drag it off with the good hand.

That night me and rich went to view a local gym / leisure club. My hydrotherapy is due to finish in the next 8 weeks and as I enjoy it and see progress Rich found somewhere with a pool to look at, we were welcomed into the centre. The manager was very pleasant; I was worried they would say I couldn’t join due to my disability. We explained how good hydrotherapy is for me and its finishing, he told us the pool is kept very warm, it’s pretty quiet in there and I could stand up independently in there. Walking it would be fine. He was happy for Rich to do some movements with me too. After that he showed us the actual gym. It had lots of leg strength equipment I could use immediately and possibly progress to upper body in time but could certainly try.

The whole place was clean. Modern and nice. It felt an ideal step up from disabled gym without going too far away to the commercial gyms I used pre stroke. As it’s in a hotel there’s even a bar with food, beer I get a discount too.

We agreed to sign up and he said as we wanted to use it for rehab and was sympathetic to my story he gave us a discount. Lovely chap.

All in all a great day, forced myself up for activities, good gym with fun time. Regular activities and then a plan to keep up hydro and more gym but alongside my lovely husband. Good day was good

I am well known within my friendship and work group for being something of a control freak, I like a plan, timings and always have, moving away from that makes me uncomfortable

But as I think back to life on pre stroke I wish I’d lived abit more vicariously, unplanned and sought more fun.

I should have got tattoos while I could (blood thinners stopped that years ago).

I should have done more nights out, even the ones in rough bars. Overcrowded with drunks, dancing. I always laughed, but prioritised being home, not spending too much money and getting home safely.

I should have done more holidays, sod the money I should have made memories.

So if I can share any wisdom it’s:

Do it: drink the beer,

Book the holiday

Laugh like an idiot

Dance when you can.

When you lose those options and just walking around the house needs thought, you’d regret it after

I’m sitting here organising paperwork and going through months of “stuff” lots of letters, summaries, appointment letters I’ve found a few get well soon cards that came alongside lots of visitors, at one point I had a diary to plan who was coming and when, pretty much every day people came: family, friends, workmates. When I got home similar happened then I had a birthday / welcome home gathering with about 50 people. After that people seem to have dropped off, yes I can’t do much out in the real world still but I can sit in my house and talk to people, where’d they all go?

I appreciate it’s not the most fun thing to do to just sit with me but other friends have taken me for a lunch or coffee or accompanied me to a therapy session.

Yes people have lives and I get that.

But I feel like there was a novelty to seeing me in hospital that’s worn off now and people aren’t interested anymore.

I’m still here, still me. Still fighting. Just a bit lonelier now.

Living in a world designed for two working arms and hands is a challenge, I’ve found the odd way to live with them (for now) so thought I’d jot them down in case they help anyone in the future.

Showering, I use a rubber knobbly device from manscaped that feels nice and has a good little grip handle I lay it flat and squirt body wash onto it. Initially I had a wall mounted pump to do this.

Toothpaste, I had a toothpaste dispenser like an animal head you poked the brush head in and afterwards it had a little bit of toothpaste on.

Deodorant, I stoped using spray on after my stroke as my surgical sites were tender, so moved to roll on which became my norm. M good side I just “monkey” it bending my arm under, the affected arm I use my hand to grab the sink then lean backwards to open the arm up and roll it with my good arm.

Dressing: most OTs will teach this and ask them, I learnt in the summmer due to my stroke timing how to wear shorts and T-shirts but struggled come October. They did a quick home session to try and it was doable,In theory, I still much prefer rich to help me.

Coats

If I lay it over my banister I can “drop” my affected arm in then pull the rest around with my good arm it’s not quick or smooth but it works.

Shoes

Initially I wore lightweight trainers as they were light to learn walking in, I then moved up to heavier ones, I tried Velcro but felt like a child so got elastic bungee cord laces from Amazon, one tug and a little clip is easy to manipulate with one hand.

Shoe horns are a great help especially in boots, I love my tombos and quickly realised a shoe horn was required.

“Slip ons” beware the tv advert that shows someone marginally near a shoe and it appearing on their trotters, while certainly easier they still require a bit of effort and skill to learn.

Eating

I use a knork (a fork with a kind of blade) to cut through most things. I was told to try a rocker knife but found it to be useless

I’ve never been a huge foodie or lover of food, in my head I equated food with being nothing more than a fuel. That was until I started hammering the gym on 3000 calories a day with macro counting too.

Since the stroke I’ve found food a difficult concept on the whole. At times the smell of cooking makes me want to be sick, my sense of smell has become hyper accute to cooking. Beyond that my appetite apparently went away with the stroke and despite now regularly walking 2+ miles, gym work and physio I am rarely hungry and when I am I find it difficult to know what I want.

I think some of this comes down to being unable to cook for myself, I was never a great cook but I could cook, my monster Yorkshire puddings were the stuff of legend.

Equally not being able to eat with 2 hands and cutlery is frustrating and embarrassing, I won’t eat out unless I’ve sourced finger food that’s ok with one hand: pizza and/or chips have become staples;even a burger is hard with one hand.

Today however I woke up absolutely craving some unusual meals:

– hot roast meat sandwiches.

– fish ginger sandwiches

Deep pan pizza

And even more unusually a desire for sweet foods (milkshake, chocolate buttons and muffins) which I never really ate before but today desperately needed. Thankfully rich entertained today’s eccentricity and we did a shop to get most of these things. I’ve had fat pizza for dinner, tomorrow for lunch I’ll have a fish finger sandwich. And I’ll eat the sweet things at some point too.

It’s weird how some changes don’t appear until months later. I’m hoping more food means more energy to progress, we’ve booked a cruise in 6 months I want to be able to use a knife and fork for, and ideally put on my nice blazers/ jackets and coats. I own so many and spring in Norway will need all these things

I’ve been pretty stoic on the whole since the stroke, I’m not saying I’ve been perfect or it hasn’t affected me because there were days where I just cried in frustration, anger and remorse. But they tended to be bursts of pain for a couple of days.

I’ve hit another major down day today pretty much 6 months in. While I’ve pretty much nailed the Walking and confidence with that is much improved, my arm still had a grand amount of zero progression. It’s just there as a knick knack, you can see it but there is zero function to it, it’s not even progressing despite continued stretching, NMES stim and attempting to weight bare when doing things like brushing my teeth.

Could I live with the walk I have now? Sure, I’m up, mobile, can sometimes move at a reasonable pace and it’s safe, lots of people have unusual walks for a multitude of reasons, it wouldn’t bother me if that is what remained of my stroke in the long term.

But my arm being zero function, zero tone is prohibiting me living my life, I can’t work, I can’t work out, I can’t type, I can’t drive, I won’t go for meals out because I can’t use cutlery, I can’t read because I can’t hold a book or turn a page, I won’t go on holiday despite the desperate urge to do so because I’m not sitting in a restaurant with someone having to cut my food up.

I’ve thrown everything I can think of and find through research at it, but it’s still sat here going “nah”.

If I could have an elective amputation I would consider it, I’d have less issues banging it on doorframes etc.

It’s not very often I completely lose hope but I’m there today.

I’ve had a physio session and talked this through with a senior physio, and while she’s keen to point out my lower limb progress and that my enthusiasm hasn’t wained so far, to not let it now, visualisation is a thing (apparently). But equally can’t offer anything more than what I already do.

I can see 3 real avenues from here:

1 – give up, look genuinely at something like amputation

2 – go ridiculous treatment, stem cell treatments are available in mainland Europe at an eye watering fee, we’d find the money if I could do it, but it’s not guaranteed.

3 – give up on everything, just accept it’s never going to change and there’s only one final outcome of any life

When I initially had my stroke a SALT (speech and language therapy) assessment was done very quickly to see if I was safe eating (initiallly soft foods: soup and custard) then biscuits, this was in hospital 2 beyond that speech was never really mentioned again

Until month 5ish when during a home OT session we were sat in my lounge with my mum present, the it sat on my living room floor and I was explaining I found the phone harder to use now, my mum said my voice was much quieter and a bit dull sounding which I’d never really picked up on, I’d realised I couldn’t shout anymore but that was it. The OT said she would get onto a Speech therapist when she went back to the hospital, this was a Friday lunchtime.

The following Tuesday my physiotherapy session at the rehab unit was interrupted by a lovely woman named A salt. We sat and made silly noises. Talked as quiet and loudly as we could. She then gave me some homework sheets focusing on breath control and diaphragmatic breathing.

We met again a week later and she was thrilled with the progress, we’d set long term goals around phone calls, being in noisy venues like pubs and trying to get more tone. I’d already become more comfortable using the phone and she set me more homework to practice noise making and breathing again.

Our next session was somewhat experimental as in Lucy had never tried it before, we had a teams session so she could remain in work, it was a bit more difficult as she couldn’t see my breathing as clearly and sometimes the audio wasn’t especially clear for her to listen.

I’d spoken about how I thought there had been progress and that people had commented on my voice being better.

Since then I’ve been out for lunch in a noisy cafe and had a night out in a loud bar with a terrible singer on too, so I think that’s all the challenges complete and Lucy had already said I was close to discharge I think this week will be the end of our time together after 3 weeks, I just wish we’d have known about her months ago

We had our final session 4 weeks after starting, I was now happily using the phone, I could hugely increase the volume of my voice and I had more inflection too. I’d been in very loud places and people could hear me. The therapy had worked L said it was the fastest she’d ever gone through the process and could tell I’d tried and engaged where I could. We had a lovely one armed hug to finish and I thanked her for being brilliant.