I’ve had a few days of feeling so low; I’ll detail each part of the day that frustrated me.

Waking up: I want to lean on my elbows, stupid arm doesn’t do anything.

Showering. I want to use both ask and hands, I miss a real shower, I’ve forgotten what running my hands through my hair feels like but I know I used to like it,

Putting toothpaste on my toothbrush, a really minor one but you try balancing a cylindrical toothbrush to get toothpaste on it twice a day when it should be a simple 2 second job

Dressing: permanently at the top spot of frustration list, I really, really hate not being able to quickly put on my clothes and needing help. (see also not being able to look through my wardrobe.

Running down the stairs. Yes I can do stairs and it took a while to learn but it’s slow and I miss being able to fly down.

Breakfast: I’ve never been a breakfast fan but I’d pull out someone’s eye with my teeth to stand with a bowl of cereal in my hand. I can’t even open the cereal never mind hold the bowl. Or I’d like to take a protein porridge to work like I used to and eat that. I can’t hold the pot up to the hot water boiler to do it nor hold the pot to eat it.

Shoes; I’m permanently restricted to those ugly slip on shoes; I have 3 pairs now so I can change it up a little but I also own so many pairs of formal shoes, timberland boots and more that will eventually just get thrown away. What a waste and like clothes it’s just more of my identity that’s been removed. Me and Timbos have gone hand in hand, or foot in boot, for years.

Driving, I appreciate I can drive but I miss the feel of 2 hands on the wheel, waving (or giving other gestures) to people, getting in and out quickly, fastening a seatbelt, pressing buttons, not worrying where my arm is sat, pressing the screen, not fighting for disabled spaces.

This specific day I managed to get a rare disabled parking space near work but then realised I’d left my badge in a different car I’d been in the day before so had to go to an expensive public car park further away, already cross at myself.

Work remains a constant disappointment; I miss the clinical activity so much, I can see a huge gap in skills that was my role pre stroke I’ll offer to help and hear “well Ben can’t do x,y,z” it’s a huge frustration.

I left feeling pretty flat and decided after dinner I’d take myself to the gym; I’ve recently joined a proper gym after having it recommended multiple times.

Gym essentials for me: water bottle, headphones, phone and car keys. I’m currently trying a grip claw style device, it gives my hand a resting point as fake grip so I can at least perform some movements without trying to grip at the same time . Trying to even get these items in the car with one pocket and one usable hand is a pain and I needed Rich to get my stuff ready.

Come the other end I’ve got to carry all my bits up 2 sets of stairs and into the gym. It ends up becoming a relay to get my stuff up to the gym so I’m fed up before I even start.

I’m conflicted on being in a proper gym again after a lengthy hiatus and using either the disability friendly gym or the tiny hotel gym we used for a while. I feel like I’m in my proper habitat; I like a gym environment. I can do so much leg strength work and this gym has new, to me, some really good pieces of kit for my leg strength.

Even using the grip claw I’m still finding it impossible to do the upper work I want, sometimes I just can’t get my arm into the right position at all others it’s just not a fit. Which is incredibly frustrating.

I spend half of my time watching other gym goers working out completely fine slowly seething with jealousy, then look at the boys with nice arms, chests and in fitted clothes and remember I used to look like that and don’t (and can’t) any longer. Dejected and walking out like buckaroo with all my gym bits attached to me I left.

I wanted a pick me up so drove to our local shop, to get some sweets but then remember I can’t carry more than one item or a basket, so leave with just one thing, annoyed again.

I’m almost 18 months post stroke. Upper limb has zero progression, I’m at a place where I’m questioning “what’s the point?” And do I just accept this is life and save my time and effort? The darker thoughts follow of if this is it do I want this life?

Everything’s backwards and I’m hanging on
No matter how hard I try I always come undone
Backed in a corner, uncomfortably numb
Watching myself become a shadow of someone

• 🎶Bad life – Bring me the horizon and Sigrid 2022