What does a stroke feel like?

One of the most common questions I get asked is “what does a stroke feel like?', the recent campaign run by the Stroke Association shows that all strokes feel different, talk about different strokes for different folk and all that. Even consultant’s asked what happened and what it felt like at almost every appointment and whilst I’ve covered the physical journey of what happened I’ve never really got into the feeling of it. I suppose so soon afterwards it wasn’t something that I could comprehend and relay in a way that didn’t make me feel “wishy washy” but now, eight months later I think I can just about put into some sort of perspective.

The truth is, the stroke didn’t feel that bad. When my face was dropping and my arm was weakening I couldn’t feel it, I knew something was wrong as the paramedics were assessing me but my naivety never assumed it could be something as serious as a stroke. The fear in my mum’s eyes unnerved me though, she’s never spoken down to me unless I was getting a bollocking and the only other time she’d used that sickening mumsy tone was when I was in year 5 and fucked my arm up so I knew it was bad when she kept telling me that I'd be ok. 

It was only in A&E when the MRI results came back and they confirmed it was a stroke that my heart rate rose, my monitors started going mental, my mum and cousin burst into tears and I was told an ambulance was on its way to take me to Stoke that the severity of what had happened hit me. As far as I was concerned my life was ruined, my body had failed me, I couldn’t be a Mum, I could barely wipe my arse and I looked like a Picasso painting. I didn’t know people could recover and I didn’t know that the worse was yet to come.

I spent the following three months living like a ghost, I was tip toeing around my body, terrified of what it was going to do next and waking up every day convinced that this was going to be the day I die. At the time I didn’t understand how critical the first 24 hours were, but I soon learnt about the first 12 weeks and the fact that I possibly “wasn’t out of the woods yet” was enough to almost send me over the edge. The community stroke team were brilliant, they kept calling my mum for updates because I was in denial about how I was feeling, I’d resigned my self to the fact that this was my life now, living in fear was my normal; thankfully my mum was able to tell them that I wasn’t coping and I was soon assigned a therapist and started CBT. I’ll be honest, it didn’t work.

I was told to write down my bad thoughts, repeat them over and over until they lost their meaning but leaving your child motherless isn’t a thought that you can shake off with mantras and arty farty breathing techniques. My best friends were amazing and knew how to distract me, talking shit for hours in the WhatsApp group chat turned my mind away from the second stroke that I was absolutely sure I was going to have.

I returned to work after three months, it was soon, too soon. I wasn’t ready but I needed to get out of the house. I’d sit at my desk and panic that it was going to happen at work and I’d be embarrassed, I was scared I wouldn’t remember my job, that people would notice my face and treat me differently. Thankfully I work with a bunch of likeminded people, on my first day back someone pulled a stroke face at me, there was a welcome back banner on my desk and a card - it felt like coming home but I still couldn’t shake the fear. I was constantly distracted by every head ache or sensation of pins and needles and tried to block it out.

Starting warfarin and getting the APS diagnosis helped - I had a reason and treatment to prevent it. I went on holiday with my family and for the first time in over a year I relaxed, I drank coffee in the bay window, wandered around the gift shop, looked at the mountain and went on walks, it was what I needed and I felt I’d recovered just that little bit more but going back to work and home soon turned my mind back to fear. I looked up APS symptoms and convinced myself I was having a heart attack followed by a DVT a few weeks later. The heart attack was anxiety, the chest and shoulder pain were aches from pushing fat Fred around and the DVT was bloody cramp. My GP was brilliant and told me it’d be a miracle if I had another stroke, it helped. Going through the science and logic of the likelihood of anything happening again was more beneficial than meditating. 

One evening my mum gave me a stern talking to, she reminded me that I was stronger than this and that anxiety was a 'poorliness' that I could overcome, if I could recover my brain from damage I could recover from anxiety. So I did, I started to rationalise my thoughts before thinking the worst. I started to big laugh again trust my body rather than cower in the corner of my mind and be scared of it. 

Eight months later and I’m a different person. I’m not old me, she can’t come to the phone, she’s dead; but I’m happy and I’m relaxed. I’m excited about the future, I don’t know what it holds but that makes it more exciting. I’m not stressing about mundane things, I’m not forcing happiness or begging for it where it’s not going to be given. I’m on my own with Fred getting us by and it’s good. There’s still niggles, sometimes I get myself in a flap over something but it soon passes. I’ve now resigned myself to the fact that I’ll probably always have wobbles of panic and the stroke will never be far from my mind but it’s not taking over, I’m not scared anymore. If it happens it happens and there’s nowt much I can do.

Post-stroke mental health isn’t talked about enough, I reckon it’s partly due to the fact that it’s embarrassing to say you’re living every day scared to death but also because it’s terrifying, when you’re in a state of mind that you can’t escape, trapped in a body that could have you off in any second you can’t verbalise it, you can’t explain the fear and the sense of loneliness it brings with it; it consumes you in the sense that you feel as though you should almost be grateful for feeling this way because at least you’re not dead...but it’s not living either. It’s crouching in the corner of your mind because the rest is broken and scary and it takes a lot of strength to stand up and take control of it...especially if you’re still trying to get your shitting left eyelid working at the same time.