Stroke and mirrors

Like the kanomi code in video games I cracked the nhs cheat code in hospital 3 (the long term rehab one) it was done purely by having a mother who has been a senior nurse in that hospital for 20 years and a reputation, rightly, for no nonsense and being direct who knew everyone l.

When I complained I was bored in my room at nighttime she told the senior matron in the area and a tv was purchased for my room (but never used by me it never left it ls box outside the doorI hope whoever ended up in that roomafter me appreciated it

One morning I was having an assisted shower and the laundry room hadn’t sent any towels to the ward, she went to her work area with a ward support worker and dispatched many, many towels to help out. The staff loved it, and me sat naked, shivering on a wet shower chair was very pleased, I’d heard most of this through the door and knew what she would be doing

I think sometimes I got a bit extra care or attention because of who she was but it didn’t do me any harm and I wouldn’t have hadit any other way.

I’m sure I don’t need to talk about all the big, obvious I miss in post stroke life: walking. Driving, working, generally using my arms, fitness, hobbies, going out for meals and using cutlery, dressing nicely etc

There are some smaller things in life that sometimes I just go “oh” when I realise it’s not something I do/ can do…yet or go to do and my body simply doesn’t respond

I missListening to music, during my drive to and from work and in the gym

Doing my hair with two hands, it’s harder with one and limits what products I can use. I can’t get the look exactly how I want and if I use a paste style product I can’t rub it in my hands first thankfully Rich regularly helps me by fluffing or styling as I lm going out

Hugging people, yes I can hug with one arm if people know my issues and I absolutely do hug with one arm but I miss gripping people between my arms and having squeezes, rubbing someone’s back when they are sad or just patting their backs sound so insignificant but I’m an incredibly tactile person so this is hard

Wrapping up in a blanket as I can’t get one out and unfold it and place it over myself on the same vein: not being able to sleep o n my stomach anymore as I can’t get my arms under my head and pillow to be comfortable

Having lunch with my sister on my day off every week then walking to pick her kids up from school (see hugging also) one day I’ll do a whole post about her and how great she has been through this (in fact somewhere I’ve drafted it before)

Gesticulating when I talk. It turns out I’ve always been a bit of a hand talker and never realised but now it’s so frustrating.

Eating chicken wings. I have a big love of spicy chicken wings but they can’t be eaten with one hand and trust me I’ve tried

Carrying two beers in my hands. When I get to a pub with rich or friends I can get around and carry one drink as my walking is pretty stable but I can’t get a drink for anyone else

Shaking hands. It’s just a polite thing to do and while at times I can just use my right arm it’s customary to touch their arm or double the hands and I feel rude.

Shaving – I’ve got quite good with my Phillips one blade and one hand but sometimes you need to pull your face and skin to get it right and that’s not happening as yet

I touched on this topic previously and that I dislike people talking about me, this isn’t your story, it’s mine, andas shit as the story is one of the few things I can do is take ownership in one way and that’s by being the one to talk about it when I need to.

I also hate a opinion / treatment that because I’m now classed as disabled and not how I was before the stroke it gives people the right to comment on what I’m doing, the other week we ran into someone in a shop who wanted to know why I was in the wheelchsir and not walking when they’ve seen me waking around recently well, I’d walked a lot already that day I was tired, it’s slow and frankly none of your damn business.

Same as if I go for a pint with my dad I don’t need comments about me being in a pub (it doesn’t matter how many times I’ve been there recently l)or counting my beers, I’m still very nearly a 40 year old man, I fully know my situation and don’t need your comments or judgement. Jog on because I can’t, I am still allowed to do social and fun things and they make me happy so your snidey comments won’t change that, why not be supportive or dnouraging “Ben it’s nice to see you out” isn’t too difficult is it?

Within a few weeks of being home it happened for the first time while visiting some family a semi- distant younger relative was asking about my recovery, not long after I stood up to go to the toilet; as he watched me walk to the toilet with my hiking pole he told me I was “an inspiration, Ben”

A couple of weeks after that someone found my blog and contacted me to say they had read it all and my journey was inspirational to read.

I appreciate the sentiment of these words are nice and well meaning but no one has ever said things like that to me before, not when I went to university with two young children a job and a mortgage, not when I won awards for my outstanding work developments to help cancer patients as an openly gay man in a northern working town that hadn’t progressed since 1975.

DioI feel inspirational? No, I played the word over in my mind and the only reasoning I could think was; there’s been countless stroke survivors before me who have gone on to achieve so much, my rehab feels very run of the mill and normal, and I never really had a choice in any of this. The stroke happened and either I prepared to lay in bed for months, maybe years then possibly a wheelchair or I start again trying to regain and learn; perhaps that wasn’t an easy choice and people see that but again most stroke patients try to get some recovery. I don’t feel unique or special, I certainly don’t feel like an inspiration. I follow 2 stroke survivors on instagram who ore inspirational to me, one is a lovely chap from Blackburn who pre stroke was a firefighter and just over a year after his stroke was back working in incredible physical condition and back behind the wheel of a fire engine; the other a young Canadian guy who had a stroke in his early 20s while playing ice hockey; in a year he was back on the ice and also in the gym looking great; these men who bounced back so quickly and regained their lives were inspirational to me. My very normal journey so far was not

I wasn’t the first person in our family to have a stroke, when I was a child (about 8 I think) we were on holiday in Florida doing the whole Diseney world holiday, my mum called home one day to speak to her sister who told her that their mum my nanan Vera had suffered a stroke. It was a large stroke similar to mine. She lost use of the right side of her body which had been her predominant side a lot of her speech functionality went too.

I don’t remember much of it, but I remember she still held court every Saturday in her kitchen surrounded by her children and their families. She still cooked a mean Sunday lunch too thst always had Yorkshire puddings as a starter, on reflection the woman was a genius! Cooking something difficult like a Yorkshire pudding with one arm and not even her predominant arm.

She had a stair lift installed and I don’t ever recall her walking stairs, Msybe an outside set to get to bingo in the community centre across the road apparently the council installed a handrail for her to get up and Down

Eventually in my teenage years she moved into a special shelteredflat for her safety, she was still somewhat unsteady, had developed epilepsy and had a bad chest, the flat block had a warden who lived in the flat next door and would nip in daily to say hello and if nanan pressed a buzzer for help she could go and help if not it connected to a callcentre who could despatch an ambulance if necessary.

I don’t recall her having carers but apparently she did to help wash and dress in a morning, get her breakfast, make her a sandwich at lunch leave an afternoon snack and also plate her a meal in an evening.

As a family we would all visit on a Saturday with lots of my aunts, uncles and cousins, I’m aware my auntie Jayne and mum used to go a lot of daytimes to help her and keep her company.

When I was 16 and at college I would sometimes take a bus home that passed her flat and decided on my half days I’d nip in in the afternoon so did for a while, I’d make us tea and sit and watch tv with her, although I sometimes felt bad if she fell asleep like I’d disturbed her day.

She survived many more years. Jokingly known as the creaking gate due to he various illnesses and even broke a hip too, she outlived her husband my grandad Jim by a few years too.

Through much of my stroke recovery the wider family made comparisons to things she had done or things I was doing, I’m not sure that’s the legacy she would want but here we are, it’s the only comparison they have to use and I hope if there is any form of afterlife she’s been watching me since mine happened and has been pleased with my progress, I’m doing this for us both nanan Vera.

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)