Stroke and mirrors

While having my weeks in hospital and wishing I could have my old life back I started to think about what elements were important to me and I could try and bring into my new life as something to build on.

I’ve mentioned in body image (link here) that I used to really enjoy the gym from a physical perspective I looked better, i found it a good way to work out frustrations and an hour a day I could be on my own with headphones on, losing myself in movement and activity without any real thought process needed.

I thought I can’t be the only person disabled, whether temporary or for life who still wanted a gym and some google searching got me a good result. In the next city there was a “disability awareness gym” with modified equipment and specialist PT staff, I made contact and followed up on my discharge too. I was invited to go for a look around and meet the man behind it, Dad drove me and him there on a Friday morning, to a prettty bog standard, well externally anyway, leisure centre, we went in and were told to jump in the lift and meet Stephen up there. We did as instructed, got out of the lift, me with my hiking pole and walked into what I can only describe as a ‘normal’ gym, rows of bikes and treadmills for cardio, lots of resistance machines and then benches and dumbbells with squat racks and smith machines, my heart did a little ping of being frustrated I couldn’t just dive on a bench and chest press but was also happy to be in a familiar environment.

Stephen walked us round the gym floor then to the changing rooms, there was a large disabled shower and toilet space with a shower seat; I had just begun stand up showers again at home and aside from every now and then needing to touch something for balance I had been pretty much fine. But it was nice to know it was an option: the main changing room had lowered height lockers which were huge too,

Stephen explained he had had an. Above knee amputation years beforehand and while in a wheelchair became frustrated at the lack of exercise options available, he pushed his local MP and somehow got this place built to the standard he wanted while in a wheelchair; he demonstrated that on some resistance machines like the chest fly the seats could drop out of the way or rotate away so wheelchairs could get in.

He then took my hiking stick off me and said in the gym I didn’t need it. He then decided he wanted a better idea of what I could do, we did some leg press and hamstring curls which I’d already done before at my rehab centre with a physio. he then put my on a treadmill, on the lowest speed possible, but still I was on a treadmill!

He had asked through the time we were there about my stroke and what had happened, he told me his story and showed me his prosthetic blade.

He then watched me walk down a corridor and said I was using my hip too much on my affected leg to walk and to slow it down and take smaller steps, he’d apparently done the same when he started walking again and still had a bad hip from it,

We then went back in the lift to the ground floor where there was a cafe we had a tea and he explained the pricing and sign up process, actually very very cheap. He did say I might need some adaptive equipment but he had loads and not to purchase anything

We returned on the Monday, this time me and mum having a stresssul drive as she’s not a confident driver and we ended up / bit lost.

Stephen met us again, we went up to the gym, we used most of the resistance equipment one by one and he noted what position I was in and what weight I could do so if I went and he wasn’t there another PT could help me

After doing leg stuff again, Stephen asked if I wanted to try chest, apparently my smile was super wide so we went to the chest press where he showed me sn adaption he’d thought of for me, a leather mitten style glove but the flap that goes over the fingers can be tightened and pulled; using that we could make my hand grip the chest press, pec fly and then lat pull down. It turned out my chest, shoulders and back had retained some muscle usage through this which was incredible to see. After a 15 min cycle he declared the session done.

We took the lift downstairs again and he took my stick off me again and said let’s do the small steps he’d mentioned in Friday : really concentrate on keeping my left foot in a line and only going half a foot length forward each step. We walked to the door where my mum was, who said the walking she had just seen looked the most natural.

I think I’ve found my place of fitness and progression with a great motivator to aid me who has a similar lived experience.

I’m writing this 4 months post stroke and since becoming disabled, I’m doing lots out and about, going places, seeing people and doing things but strangers are the big variable I can’t account for,

The sympathy smile, when I’m in my wheelchsir, as infrequently as possible, people sometimes stop snd give a weird smile I’ve named the ‘sympathy smile’ it’s as if they recognise I shouldn’t be in this situation and they are sad for me, trust me there’s no one sadder than I am.

The judging , so I might not embrace my disability status and often, at times, a bit pigheadly try to carry on as if life is normal. To a stranger I am still a young man, I walk (with my stick) to a degree and I can talk and communicate clearly.

Last week we went to a nice restaurant for our sons birthday, one I am familiar with and you enter on the venues mid level with 2 below it. Which I knew the normaltoilets were located on. After dinner before we left I needed a wee, so went to the matre’d station and asked for the toilet, I’d shuffled over with my stick very slowly and the lady had seen me coming, she told me the toilets were downstairs, upon explaining I’d likely fall down them she did point to a disabled toilet with her and offered me the key, did she think I was walking like this as a mick- take? I looked at the stairs, steep, marble, curved and no lift, I absolutely needed the disabled one on this level , so hesitantly took the key and made my way there feeling embarrassed thst someone thought I wasn’t genuinely in need.

The first pub I visited was in the midlands with our friends, after waiting for my husband and friends to asses the toilet safety( was the floordry? A big space what sort of toilets did it have?

I set off at my slow pace and quickly encountered an issue; 2 doors to navigate, I got through the first fine, the second was more difficult, trying to bslsnce with my stick, let the first door close then get through a second.

The way back out was the same and while stood between both doors a man came into the toilet, opening the external door, clocking me then held that door and as I got closer leant over me to hold the other door for himself , a stranger being genuinely considerate and kind, it made my day.

Finally I made it to a small local pub with my family and some extended family were there too,

Again while making a trip to a toilet on my first visit I found the weighted door a little difficult,

I grew up in a small villiage where lots of people know each other, I worked in the most central pub from17-22 so I’m well known too

On my next trip to the toilet a relative held the door which was nice but he was stood with people i partly know and while in the bathroom could hear a conversation about my health and what had happened, I was a little bit annoyed by this, I am perfectly capable of explaining myself and it just felt like gossip not interest or concern, I got more sympathy smiles as I passed through back to my seat

After 2 weeks in”HMP hospital 3” (I was fully goingin on the prison analogy : being held against my will, horrible food, an hour of exercise a dayand sometimes I was allowed outdoors, briefly) it was however week 5 for me in hospitals Iwas promised a progress meeting to see if I could go home the meeting would be: me my parents, my husband. Allof us and a doctor piled into a small lounge to discuss me going home which I was desperate to do it was this point I realised how much power the physios and OTs had over the situation they led the conversation and told me I was no where near ready to leave and to do 2 more weeks of physio then try again, the house still needed safety assessing apparently i had to be able to stand and transfer to/ from one seat to another (say a sofa to a wheelchair and back and ideally from a wheelchair to a toilet and back, but that required standing. Moving and sitting with no assistance whivh I wasn’t capable of doing yet, there was an option to have some medical device equipment sent home but that would also need specific care staff to use assist me through the day it and rich would need training too. Also d likely need carers to get me home too(carers link and devices link)

I went back to my room and had a cry, for over a week of focused on the meeting to bring my route out to some normality and time at home and I hadn’t even got close

The early days of stroke recovery had a lot of my friends wanting to visit (which was 6thoughtful and lovely.

One of the first was my friend Joe a 6foot+ runner and one of my ex gym buddiesthe next day my best work buddy Ben came, agsin he’s over 6 foot, with a baby face but ripped and genuinely one of the nicest people I know. My sister met both also my then oldest friend Tom who drove 2 hours to see me, Tom Is also a tall handsome man my sister met all 3 of these men in orderacross 3 sequential days and asked me if I was building my own, avengers squad of tall, attractive, muscular, strsight men, I realised that possibly I have built this over the past 36 years benvengers: assemble!

I will say each of them despite being incredibly handsome arent just my friends forthat reason; all have wonderful personalities.

Tom I’ve known since I was a child, we usually plan our year around weekends at his house (or vice. Versa)with his wife Charl whom I also absolutely love and their beautiful little boy Alfie. We have our own bedroom in their house because we visit so often Tom knows me incredibly well. One of my favourite things he does is when we drink beer together he often strokes my hair which he enjoys Douing and I love being fussed.

Ben will appear multiple times through this journey, if he weren’t straight I’d have tried to marry him years ago,lhave offered todo other marital things with him many times, never with success though however he sometimes feels like the other side of my brain, the more practical one. At work if I ever need a reassurance or an opinion he was the only person I asked because h trusted his judgement He knows me from my self righteous morals to my dark humour. It’s like having a twin at times. He was agood friend to have through rehab to message frequently and he always responded withhonestly and kindness

Joe I met in my first day in my current job and we became friends quickly with a shared sense of humour. And symmetrical taste in foods. We’d often have little dinner dates and go grab a Nando’s or pizza or even better spend a night in playing games with beers. You know when someone requires no effort to talk to, that’s my Joey. He’s also permanently bright with his outlook so good to bounce off when I was feeling a bit low

weeks after the last disappointment(linkhttps://strokeandmirrors.uk/?p=87 1) where I’d had to commit to 2 more weeks we allmet again in the physio room,I went in all guns blazing after a night of thinking things weren’t progressing and I’d be stuck in HMP Hospital 3forever.

I set off saying I was finding physio hard work and the progress slow, the physios weren’t saying the same they said they pushed me hard because I could do it and their view was my progress was steady and ok.

I said I was home sick missed my family and belongings; this fell on deaf ears as I’d expected, I’d thought the previous night of alternative discharge methods (ie getting kicked out) my choices were:

Stop engaging with physio all together, but that reallywouldn’t help me, go on hunger strike (link to body image chapter, the big weight loss was found around this time) or start being abusive to staff,

I could maybe do number1 but 2/3 wouldn’t happen.

I didn’t even mention these in the meeting. I was told I needed another 2 weeks with a focus on toileting safely with the standing transfers so I’d be ok to do that at home, Rich did try to help me up and turn that day from a wheelchsir to the toilet but it very nearly did his back in and it wasn’t safe for either of us. (Link to psrole 3)

Week 6, still residing in hospital 3 I had somehow forced myself into a great headspace and started looking forward to my daily physio sessions as I was seeing continuous improvement and it filled my days

On the Monday the physios did a scenario of: let’s say you’ve fallen over, face first, can you get up? And I could get to my hands (in a fashion) and knees, then a squat then up to my feet if I had something to balance with

Itwas the first time I felt I’d used a lot of my body together at the same time in a long time and it almost felt normal like I had some control of my body

The Tuesday was another time the physios challenged me. Flamingo standing with all weight on my weak leg and balancing then could I move my strong-leg around then n front of me and transfer the weight,it was wobbly but I did it! It was my first kind of step,

Also I wore shoes for the first time in over 2 months; I had a pair of white and green river island trainers on, I’d once bought them for a holiday and rarely worn afterwards.I’d last worn them going to theatre in hospital one, it turns out not only are shoes nice for style but they adjusted my feet position to stabilised me more by leaning me forwards a tiny amount and stopping my weak foot from rolling

In the time I’d been in hospital I had ordered 2 pairs of shoes both timberlands (or timbos) which as a brand I have a real soft spot for. One was a walking trainer I planned on using for dog walking hopefully in the future, the other the traditional sandy colour but with a blue detail these were going to be nicer and more for going out, I wasn’t even sure what going out would look like in the future, I couldn’t see me many beers deep, in in a bar with friends (normally gymnastic friends) having a dance I definitely wanted both pairs for our planned September holiday, initially booked as 5 nights with me, Rich and marina the dog. We planned on doing a lot of walking and going out when we booked it months pre stroke. But like many things it just got added to my goals list

Week 6 also had parole meeting 3, ,link here) where my request to go home was once again declined, while I had a room of everybody involved in my care we discussed the fact the rehab service was great but physiotherapy stopped on a weekend which was a shame when I was doing so much during the week. one of my favourite physios “bit” and said she would come in on the weekend on her own time and without the rest of the team which was incredibly kind of her

Saturday came I was sat outside with Rich, my parents, sister and her kids when the physiotherapist arrived

Claire, rich and dad left to go to costa coffee, I went to the physio room with the one physiotherapist and my mum who had been asked to assist, after some normal exercises like bridges, core work and then standing up. I was sat perched on one plinth bench and another was placed at 90 degrees to my right n making an L shape with the second bench . I was asked to stand. Go through the mechanics of moving my weak leg in a step: core tight, thigh up from knee, drive forward with hip., place foot,weight and power through the foot, get bslsnced then bring the right, strong, leg to match and keep repeating. The physio sat in front of me with a wheeley stool and kept moving back away from me, mum stood to my left supporting my weak arm as a slight balance aid and my right arm lightly touched the bench plinth Not to hold on to but just for a feeling of balance, it was happening after 6 weeks I had taken my first steps. I walked the length of the plinth which was six feet, I had walked!! As the physio said we were done. I got into my wheelchair and cried at doing something I’d ruled out ever happening again, mum cried too and even the physio came for a hug and cry with us.

We nipped back to my room to grab some bits and then went to find the family up in Costa to tell them, only dad and rich remained but were equally as thrilled, I cried again telling them what I’d done. It was a big step not just the physical steps I’d taken but mentally too, i knew this was a breakthrough and a big tick on my rehab progress

was lucky enough to grow up in a small village with a big family, my mum being the youngest of 5Children;who all of which had 2 children each as a minimum and most of us have had kids now too there’s almost 30 of us kicking loosely around one small villiage, my mums eldest brother my uncle Jim is generosity defined he’s never happier than when he’s got a house full of people. I’ve always said the weekends at their house are the aspiration I want; his adult kids and grand kids descend and often other people just nip in, passing through sayinghello there’s always a bottle of wine open and beer in the fridge, it’s a hub for the family and they just pass through and chat I hope our house becomes the same for my family in the future.

Uncle Jim has been ill for a couple of years with COPD and a lot of respiratory issues. He’s been pretty much always on oxygen and has times when he feels like he can’t breathe which cause panic and stress and I imagine just aggravates the other issues

In 2022 he started being semi regularly admitted to hospital when he felt seriouslyunwell with his breathing this continued into 2023.

He was admitted into my hospital 3in my week 7, but was adamant he was leaving his ward to find and see me, he’s a true patriarchal family man and wanted to check in and see how I was doing He wasn’t allowed a visit but his wife my auntie Christine did visit and said I was on his mind and could I visit him so he could put it at res; 2 days later me, mum and dad went up to see him. It was the day after I’d first walked (link:one small step) but we took the wheelchair to his ward.

He was thrilled to see me. He really was, said I looked good and he thought I’d have more facial droop, He was concerned about my mental and cognitive function and if I was struggling with anything communication wise he offered to come and sit in my room, he said this as he was sat with oxygen on, looking very tired. I declined the offer thinking I probably looked a little healthier than he did

But 2 family menbers both in the same hospital at the same time did feel a bit cruel.

We agreed to reconvene in the pub at a later date

This post in memory of Uncle Jim, Rip 28/7/2033, sorry we never got that pint!

hospital 3 the rehab one, I had my own room. During a session where I was trying to emotionally blackmail the physios and OTS INTO LETTING ME LEAVE I TALKED ABOUT BEING HOMESICK.

Their response was to decorate my room with things to brighten it up, they put up a huge sticky sheet which became home to some cards and drawings from my niece and nephew, including some entertaining ones about mr bump falling over and a heart saying “I will get better soon”

My darling husband under hearing the phrase “brighten the room” decided the brightest thing in the world is Kylie Minogue so bought a life size cut out and propped her in my room,

Every time someone new came in the room they were startled by a figure in the corner. Amusing when it was friends. The agency night nurses were less than impressed on many occasion. Thinking someone had snook in and was stood silently watching them it became a running joke between myself and the majority of the staff, everyone was concerned about her when it was time to go home but she briefly got back before I did and went into my “recovery room” that was previously our guest room

hospital 3, the main rehab centre,

I was placed in a nice side room, en-suite (not that I could use it), the room door had a singular pane of glass on to the corridor.

It became apparent on night one there that was a man elderly lady on the ward with dementia, I thought about her regularly, imagining that she was already being confused about the world then having a stroke: did she understand why her body no longer worked properly, how was physio with constant demands and intensity for her to experience? It felt exceptionally cruel for her, it played on my mind a lot

She had taken great umbrage with being on the ward, and most nights shuffled her way towards an exit, would hit the locked security doors and beg to leave followed by staff shouting her name , sometimes she’d ask for the police phoning as she thought she was locked in the ward against her will, despite my sympathy and being distraught at my own situation I did often have a wry smile at her antics

She regularly tried my room as an escape route but it didn’t go anywhere. Nightly I’d see her silhouette pass my door, then she’d appear, peaking in and breathing on the door so it misted over like the raptors in Jurassic park so she earned the name Jurassic Margaret admittedly not my most compassionate moment, one night she got in the room, clocked nurse kylie the life size cut out and like everyone else was startled by her so hit her with a walking stick, sacrilege! I buzzed a nurse who came and like a budgie at night threw a blanket over her head and essentially dragged her out of the room