Que sera sera

Share your story Recovery journey
#1

If I had a crystal ball when I was younger or a way to see into the future, would I have done anything differently? Possibly.

Would it have changed what happened? Probably not.

The truth is I don’t know why I developed a clot, one small change within my body with potentially, such catastrophic damage.

Did it develop in my brain or travel to my brain, where did it come from? I don’t know.

All I can say for certain is one evening whilst sitting watching TV with a cuppa and a biscuit, it happened. I still prefer the term CVA, (cerebral vascular accident) though it’s more commonly known as a stroke. I think I prefer CVA because part of me still wants to deny it happened, though of course I know it did, I think it’s a defence mechanism of sorts, but hey I’m no psychologist :smile: just my own observation.

Initially, I lost the use of my right arm and couldn’t speak, my face had drooped, so classic FAST signs. The thing is, whilst I knew almost immediately it had happened and what it was, I took the dropped cup into the kitchen and had to physically scoop the half eaten bite of biscuit from my mouth with my fingers as I couldn’t swallow it (apologies if that’s TMI) cleaned up the spilt tea (with my left (good) hand) before sitting and processing all the feelings and sensations happening within my body, I tried moving my arm and hand, nothing, no movement only strange tingling, as I’ve mentioned previously, I felt so calm, so peaceful, almost euphoric, detached from emotions such as fear, even though I knew I should get help, which of course I did after a few minutes, however initially I sat and contemplated, I internally explored my body and mind.

After leaving hospital I wanted to know the reason why it happened, but I wasn’t given one. The only follow up investigative test I’ve had (other than a CT scan in hospital, which revealed nothing) is a 24 hour heart monitor, which showed my heart’s ok apart from I’ve got a slow heartbeat.

So, it appears it was ‘just one of those things that happened’.

I’ve made quite a good physical recovery, all things considered, but it messed with my head, my emotional and mental health suffered. It made me think of my own mortality, not something I’d considered before, I believed I was fit, healthy, an event such a stroke not on my radar. I’m not the same as I was, but I’m here, still fighting. I have my off days when I have that pang of nostalgia, wishing I could have prevented it from happening.

I’m a work in progress, I’m getting there, I’ve worked on my emotional and mental health, fitness levels are lagging behind somewhat now I’m back at work but again something I’m trying to rectify.

I’ve come to realise it’s no good dwelling on the what ifs, the could of, should of’s, things happen throughout our lives that we have no control over both good and unfortunately bad. All we can aim to do is the best we can to look after ourselves, our bodies.

Wishing everyone all the very best, stay strong, keep fighting, keep pushing forward.

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#2

Aye, @Mahoney, we are works in progress. I’ve never heard of the term CVA. If I were to approach my younger self and say, “You’re going to have a stroke at forty-four.” Would I have been better prepared for it? Probably not. Indeed, facing mortality in such a way is both enlightening and distressing. And the time it takes to unknot it all, like tangled cordage, it is both time consuming and infuriating. Very few people around me have health issues, I feel like an outsider sometimes. Do I have the wisdom of impermanence? Perhaps. I’ve always thought that stroke or CVA is a rather odd injury in that it is the very seat of consciousness that has been obstructed, and we must use the tool that is broken to fix the tool that is broken. Not with another broken tool, but with the same broken tool.

I don’t think dwelling on if scenarios helps either and, for me, there were definite ifs. Had I been a bit less gung-ho with my body, I may not have torn that artery. I can assure myself now, that I am a lot more sensible with how I approach life physically. I made peace with having a stroke early on, but what got to me was how others perceived it around me, and the pain. The pain is difficult for me. I mean uncomfortable pain from my symptoms, not anguish. I overheard my mother-in-law saying to my partner, “Well, if he can read a book, his vision must be all right.” Those kinds of comments hurt me because it takes me a lot of effort and cognitive energy just to achieve daily tasks, and I think I am fairly brave and determined. Those kinds of comments undermine that spirit I work so hard to muster. I don’t want people to try and understand, because I know it is near impossible, but I do want people to just accept as I have had to.

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#3

@Rups you are brave and determined, I hope your MIL isn’t trying to be deliberately hurtful towards you with her comments, perhaps she doesn’t fully understand the effort you have to put in to get through the day and do things others take for granted. Not everyone understands the ongoing impact a stroke can have on a person.

It was the paramedic that took me to hospital that used the term CVA when he called ahead to the Stroke Nurse advising we were on our way to get things prepared for my arrival, I later looked it up to see what it meant.

The brain is remarkable, as you say the broken tool is indeed the tool that has to undertake the task of repairing itself, extraordinary when you think about it.

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#4

@Mahoney very well said. I think a lot of us can see some of our journeys in what you’ve written.

I too try not to dwell pn the what ifs, or what could have been. Learning to live with the hand we’ve been dealt is a more productive use of our time i think. Having said that there is always those moments where i think about the what ifs.

You’re doing so well. Keep going.

Ann xxx

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#5

Thats a great rational post and i can 100% agree with everything you have said.

I had a very similar experience to you, apart from i actually recovered from the first stroke i had but suffered a more serious episode in hospital the following day. I now have a incident loop recorder fitted inside my chest looking for a cause of my clots…

Staying in the moment has helped my mental strength and psychological recovery enormously…dont dwell on why it happened and dont get too far ahead of myself.
Parts of Andy Version 2 are an improvement on pre stroke Andy - i focus on the positives always.
Some days are much harder than others, but its oneards and upwards from here.
A great post

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#6

No, she’s not being deliberately hurtful. She wants me to catch some peacocks, but I have said no because it is too dangerous and vigorous a task for me to do post-stroke. I know she doesn’t understand and I don’t want her to try. To accept would be better.

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#7

Excellent description of what happens to us. It was really weird that in a way my “anosognosia”, not knowing how ill I was at first because I was ill, was really quite pleasant

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#8

Thanks Ann

Couldn’t agree more :+1:

We’ve all had a rough ride but are making strides forward, big hugs :hugs:

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#9

Being positive is what I strive for too, wishing you all the best moving forward, big hugs :hugs:

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#10

Don’t blame you Rups, I personally have had no experience with peacocks but it doesn’t sound pleasant catching them from what you say.

Hopefully your MIL will come to accept your situation.

Best wishes

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#11

You too.

We are all sailing on the same sea but in different boats and different routes to get to the same place…the best version 2 of our selves.

The waves can be scary but we have to approach them head on and stay brave and ever watchful

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#12

@FionaB1 it’s a strange concept isn’t it, best wishes

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#13

I like that analogy, describes us perfectly :+1:

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#14

Mahoney–You seem to be at peace with all that happened, so I hope my comments don’t mess that up. After I had my stroke, I was told to see a cardiologist, which I did and also wore a 24-hour heart monitor. It was discovered that I had afib, which I never felt, and that probably caused the clot and thus the stroke. (Afib causes 15-20% of strokes caused by a clot. ) I was put on medication to control the afib. The cardiologist said I was lucky that it was found during that 24-hour windodow, since often afib comes and goes and thus is hard to find. Sometimes the doctors install an implant to monitor the heart for a couple of years in order to detect an afib episode. If nothing manifests after 2 to 3 years, they remove it. Just more information. Jeanne

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#15

This thread from the OP on is one of the best ones I’ve read anywhere.
I accepted my stroke immediately as “oh well, shiit happens, note how do I make the most of it”.
Mine took 36 hrs from telling odd to my rhs not working
I was talking to a guy who runs a stroke charity earlier this week and he said “I wouldn’t have volunteered for one but having one has made me appreciate life more” which I agree with

Stay strong all & make the best progress every day

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#16

@axnr911 Jeanne your comments haven’t messed with my equilibrium, I’d have more tests if they were offered to establish if I have underlying medical issues but it appears my GP is not concerned, the stroke Consultant discharged me from his care at my follow up appointment, which was at the 6/7 week mark, the appointment was a telephone call (due to Covid), never received a MRI, so the after care I received was minimal.

It’s good to know they found a cause for you and you have meds to control the AF.

Best wishes

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#17

Thanks Simon, on most days I’ve drawn a line under it and accepted it, unfortunately I’m not perfect… (yet :joy:) I have the odd moment of wistful thinking.

Best wishes

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#18

As Oscar Wilde is reputed to have said “none of us are perfect, I myself do catch the odd cold”

:slight_smile:

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#19

Morning @Mahoney. Thank you for sharing this and starting this thread. It’s a great read and has helped set my intentions for a positive day. Thank you, Julia x

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#20

@JuliaH Thanks Julia, sending you best wishes and positive thoughts.

Take care

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