One year later

Today is my first anniversary of surviving a stroke. It has been a year of many ups & downs, good days & bad days, laughter & tears! A year ago I didn’t think that I would still be living with the effects of that stroke!

On the 5th June 2023 I woke and had my whole day planned. Went into the bathroom and suddenly my whole right half went completely numb I didn’t know what was happening but was able to walk back into the bedroom. My daughter phoned for the ambulance, I walked down the stairs to wait for the ambulance and when it arrived I was able to walk out to it, still with this weird numb feeling.

After a few days feeling started to come back, and those feelings have changed several times during the year, from ‘nettle stings’ to the present buzzing/fizzing, with many other sensations in between. I’ve been told there is a good chance I will never get the proper feeling back, but I could be an awful lot worse and have decided to make the most of, and to work with what I have, AND if I ever do get proper feeling back anywhere it will be a bonus!
Although everything I touch feels like sandpaper, including fleecy fabric and walking feels as if I’m walking on coarse sandpaper, approx 90% of my right half has some sort of buzzing/fizzing sensation. The exercise regime I’ve set for myself is aqua aerobics twice per week, archery twice per week and exercise during the 6 week PREP course arranged by the local Chest, Heart & Stroke team. Both aqua & archery were tough at the start and many times I felt like giving up, but I kept at them and feel much better for it.

There are things I can’t do and try to work round them as much as possible. I appreciate an afternoon nap when possible and all the things I couldn’t do last year I’m trying to get as much as possible done this year. Getting there - maybe not as fast as what I would like, but when I do get a task completed I am very happy!!

I thank God for giving me this first anniversary. It has been a long year with a lot of frustration and feeling useless, but those ‘useless’ times are becoming less & less!!!

This is a message to myself as well as others - don’t give up - have your ‘off times’ - keep trying new things and how to work round them to make it easier for all the above.

Deep breath now as I head into my second year!!!

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@Evie16 Fantastic news! You’ve worked really hard and It’s great to hear you’ve made it through to your first anniversary with such a positive attitude. Well done and my best wishes for a full recovery.

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Hi @Evie16
You’ve clearly come a long way since you first posted at days 21 & 38 :slight_smile: :slight_smile: . Your distance travelled sounds far :slight_smile: & includes the emotional/ attitude side as well as physical healing

Have you gone back to look at the milestones passed or maybe you were keeping a diary?

Seems we didn’t ask where you were when you first posted but you mentioned CHS so I’m presuming you’re in Scotland? (Maybe this is a conversation weve already had :slight_smile: )

I’m so glad to hear your positive news - and to repeat a factor "you will continue to make progress while you continue to put in the effort” :slight_smile:

Today is a sunny day here in Edinburgh I hope it’s a sunny day with you too (whatever the weather)

Caio
Simon

Ps have you done the FAST survey

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…and there is a good chance you will (give it time)
just keep moving (especially for your nerves to settle)

ciao, Roland

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@Evie16 what a positive post. Sounds like you have come a long way in that year. I think most of us thought we’d not be living with the stroke affects one year on but I guess that’s because we don’t understand stroke until we have one.

Well done on your aqua aerobics & archery. I couldn’t do either of those pre stroke never mind now :rofl::rofl: they’re a greatvway of getting your exercise in though.

I really hope tge next year sees your fizzing/buzzing sensations ease.

Best wishes

Ann

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Congratz on your amazing progress. I can understand your fizzing feeling. I got that in my left hand back in 2019 and I still get it today but it is tolerable and not painful. I can say I have become used to it. You described it better than I have ever heard before as I just called it fuzzy.

As long as we want we can always progress and although it sometimes feels very slow we are all in some cases learning as if we were a newborn.

It sounds like your stroke was worse than my original stroke and you have come so amazingly far in that one year.

We as humans have a hard enough time understanding the brain and when you add a stroke to that it muddles everything up further and I believe you are a first class fighter with the courage of the fiercest creature and I can say I respect and admire you for all you have done this far!

Keep up everything and keep fighting because you can win this battle.

Respect,

Jeff

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Hi Evie
It does sound very much like central post stroke pain. Despite it’s name, the symptoms are not always pain, in fact far from it. Stiffness, twisting, being pulled, numbness are just a few.
I believe that the tingling sensations might be very very fast pulses of burning sensation.

There is a big thread on cpsp on the forum. Some people are lucky and the sensations do fade away. There are quite a few videos on you tube about living with chronic pain (pain that lasts more than three months).

You may find that you can control the sensations to some degree. This is a brain injury and there is potentially nothing wrong with the area where the sensations are coming from.
Something like this might help, I have only discovered this myself.

Hope this helps
Nigel

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What a beautiful post, Evie. I am so happy for you. I am certain your attitude is a huge part of your progress. I hope you will visit us often, as long as it doesn’t keep you away from your progress and enjoyment time. I enjoy the encouragement and support I find here. Happy anniversary, and here is to a very many more, even happier!

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Happy Anniversary @Evie16, you made it happen :clap: :clap: :clap: :partying_face:
It is a long slow road; coming to terms with and learning to live with that fact can be quite daunting in the beginning, scary even. It takes courage, determination and a bit of stubborn tenacity to fight your way through it. And your stroke did not take any of that away from you so onwards and upwards you go to your next anniversary. :partying_face:

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awesome, thank you for sharing,It scares me when people say that these feelings could last for years. so how encouraging hearing your journey.
Weldone! I am 7months now after my ordeal, some say there will be some sensations I ll have to live with I wish I could know those so I can Mentally start accepting it now.
Thanks

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The thing is it all depends on what and where your stroke hit, the extent of the damage, what is repairable and what’s not. There’s really no way of knowing all that as no two strokes are alike.
You are only 7mths into your recovery so there is still much room for improvements in my view. And chances are another 7mths from now things will have improved some more. Some folk like to keep a diary for this reason; they can look back and see just how far they’ve come. Because when we are living with stroke on a daily basis, you don’t always see what’s improved, what’s changed for the better; it’s only until we look back that we realise.

I find myself doing that a lot just being on this forum. Some one comes on here with an issue and suddenly I remember I used to have the same issue but don’t anymore or it’s just not an issue now as I’ve got so used to it. But then I’m the kind of person who has a high tolerance for pain but a low tolerance for say pettiness. We are all unique :wink:

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