Two Years Post Stroke

On this day, well I believe so, I was dragged into an ambulance at about two in the morning. The paramedics strapped me into the ambulance bed, and I was briskly taken to A&E only to be told the next day that my brain was fine. As with @Mahoney, I had a stroke in September, it was 2020. My reaction was one of blunted emotional response, “Just typical”. I thought I had lived a rough and ready life, I thought I had experienced my quota of ups and downs, and then a stroke came my way. The first year was a year of mental and physical adjustment, the fog, the confusion, the shuffling from one side of the room to the the other. The breathing difficulty, the pillow that felt like a stack of magazines, the insomnia, the giddiness, and the fatigue. Every day was an effort (and still is), but not as much, if I am to go by my stroke diary. Reading back, I discovered anew that I was a complete mess. I slept for hours every day, for months. Shuffling to the bathroom and back would require a long lie down. I didn’t shower for a couple of weeks after returning from hospital, and when I did start showering, I had to plan the day I felt able enough to wash.

The damage to my brain caused severe cognitive visual/spatial issues resulting in daily giddiness from the moment of waking to the moment of going to bed. I am gobsmacked at the daily disorientation I dealt with everyday to get where I am now, still with oculomotor and vestibular issues but not as debilitating as that first, horrendous year. I have to remember, at one point it enervated me to walk from one side of the kitchen over to the sink. Half an hour in the kitchen would baffle my brain about so much, it would send me to bed for a long nap. The first year was a year of research into the kind of stroke I had and the effects, as well as, constant physiotherapy. I seemed to spend every day exercising my symptoms, and doing very little else other than sleeping and eating. My garden got overgrown, the trees wispy and neglected, the pages of an unedited novel sat on my desk gathering dust, and I literally lived in my bed.

The second year brought about some better progress. My walking went from shuffling to walking like a gunslinger, but now my gait has adjusted to a more even and paced step. I still do visual tracking exercises and the like as I still get giddy as I walk, turn my head, or am surrounded by too much visual stimulus. This is still a daily challenge but has improved. The dyspnoea that plagued my every step has almost gone thanks to controlled and Zen breathing techniques.

I have learnt to push my symptoms until an uncomfortable point to gain more control over my rehabilitation progress and visualise the end goal. I have learnt to control my breathing, and use audio cues to stop nystagmus. I still get tinnitus every morning and every night. Not so acute at night as I listen to ambient space soundscapes on a smart speaker to help me sleep. I am still playing video games as part of my recovery programme, and have clocked thirty-three games thus far. It challenges my problem solving skills, motor control, reflexes, and helps me relax.

There have been some odd developments. I no longer get vertigo up high places, this is because I can’t judge distances, so my brain interprets standing on solid ground the same way it interprets being up high. I experienced this the other day cleaning our gutter, three storeys up, in a valley on the roof. Prior to stroke, this would have made me nervous, but as it is now. I’m okay with it. My associative memory has taken over my working memory, and has become a useful skill for keeping track of things I need to remember. It isn’t foolproof, but I know I can mostly rely on it. My ability to rationalise has sharpened, I think this is because I have to work in a more methodical way, and can’t afford to waste time. I have a deeper appreciation of what I am doing and where I am in any given moment. My lack of filter and disinhibition has made social situations easier, and talking to people a lot more effortless (It has also landed me in some sticky spots).

It still all is 1-2% improvements with a 15% upswing every few months. All around me, the world carries on, unabated, while I am still getting up off the ground. I am still of the opinion that I am building a better brain. I have had to make life choices that, seem to me, better ones I may not have made before the stroke. I am honoured to be among the wounded warriors who have received the most unusual of injuries, and are still embracing life.

I still find that, along with the challenge of stroke, interacting with other people can be onerous. Especially when they give advice on my symptoms, such as relating neurological fatigue to tiredness, or relating vertigo to cognitive spatial/visual awareness, or oversimplifying things such as the time needed to complete a task or do an activity. I wrote before, that the only person I can be useful to, is myself. I have continued that principle.

I am grateful for this forum and our community, without it, recovery would be gloomier. I have a five year rehabilitation plan. Next year, I plan on getting an electric moped, a lifestyle change. I have started fishing again, and have returned to making lotions and potions from herbaceous plants. For the record, today has been an off day. Symptoms are all over the place, can’t focus properly and get giddy every time I take a step, but I need to listen to my brain, and rest today. Thank goodness for the recent showers, the garden is soaking it up.

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@Rups what a great read about your journey 2 years post S.

You should give yourself a big pat on your back or treat, for how far you have come.

(I am grateful for this forum and our community, without it, recovery would be gloomier). Me too I didn’t know such a caring community of people who are SS existed and I sure did need you all over my sad and bad days, and still do.

Rups you give us all such a lot of advice and you are well read up on strokes.

I think we should call you Dr. Rups.

Hope today eases a bit for you and you are bouncing back tomorrow.

My kindest appreciation and respect to you best wishes Loraine :hugs:

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I echo what @Loshy has said you are a huge source of knowledge and I always look forward to reading your posts :pray:

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@Rups you have been on one journey & continue along that journey still. Thank you for sharing your story it’s encouraging to see how far you’ve come despite the daily challenges you face.

Your research & knowledge sharing is very much appreciated. I look forward to hearing about the rest of your journey as you continue along it’s path.

Hope today’s symptoms pass soon & I agree this forum is a blessing & helps a lot of us through some dark days.

Best wishes

Ann xx

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Hi Rups. A hard journey but think of your progress in that time. We all have off days and must do our best to get through them. Today two ladies in my exercise class commented on my progress, so improvements may happen that we don’t notice

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Thanks Rups for sharing your journey to date, it’s good to hear the progress you’ve made and that you’ve got a 5 year rehabilitation plan, an excellent idea.

Wishing you all the very best

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Well done on sharing your story, gives us all hope.
Jane.

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Good morning Rups @Rups. Thank you for detailing your journey here for us to share and learn from. I hope you have a better day today. The garden certainly will do. It is breathing an almost audible sigh of relief. It is helpful to look back and realise the steps we have made and changes that have happened however hard it is to stop comparing to how it might have been had this event/events not occurred and the grief associated with that.
Life feels like a battle at times but you set us all an example of planning forwards, being informed, and doing everything you can to give yourself the best opportunities. Thank you and please keep us updated on the ongoing journey, Julia x

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@Rups morning Rups. Hope you feel stronger today and listened to your body, a rest well needed as you seem to be always on the go. If you need it today (I do actually) then take it easy and you of all people know that.

I re read your post this morning and your 5 year plan sounds great! You’ve already had 2. A scooter sounds great to. So a goal has been set so we will watch this space.

Our gardens are so happy for the downpour. I have flowers which had died off, and are coming back to life so I’m quite excited. I’ll take some pictures when it stops raining.

Keep going Rups as we know you will. My best wishes and positive vibes to you Loraine

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Rups You are a warrior! Don’t you forget it. Moira.

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Yes, this forum is invaluable and your contribution to it is immense. A five year plan sounds a good idea. I am still gulping at the very idea of the gutters. My aim is the loft ladder but at the moment it’s a distant aim*

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Good to read u story it’s a long road to recovery even if it’s a big stroke or a so called smaller one. I hope we allhelp and encourage each other hope u recovery carries on with kind regards des

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Dear Rups, thank you for sharing your 2 years Post Stroke with us and all the advice you have given to all the forum. I read your messages about strokes wholeheartedly.
Hopefully, you will be feeling more positive about your self tomorrow.
M kindest regards and positive thoughts,
Triciax

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Rups,
What a great writer you are. Another thing to remain thankful for, because despite all you afflictions, you can communicate and have great dry wit.

Keep up the recovery and enjoy the small breaks.

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Diolch @dingalingalong, my acerbically, dry wit is often gone unnoticed or misinterpreted, thank you. :grinning:

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@Rups , Great post and really good progress!

I love that you play video games as part of your Therepy :grin:. I do too. I was a big kid before stroke and have always been into video games but the loss of feeling in my fingertips of my left hand has pretty much ruined most gaming. However, I refused to let it stop me playing so I bought a steering wheel & pedals which enables me to fully enjoy driving games. Most days after work I find an hour of Grand Turismo is a great stress reliever. I have also tried a few games with controller that don’t require perfect control.

Here’s to us man-kids :rofl:.

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Ditto, I find playing a game as a great way to unwind. I have a Nintendo Switch and I can purchase a game for less than two pounds, it gives me weeks, sometimes months of gameplay, good story and challenging puzzles. If I were to rent a film on Amazon, it might cost fifteen pounds and I only have forty-eight hours to watch it. It also gives me an excuse to shout, grrr, stamp my feet, cheer, do a little bum dance, cry out in exasperation, and let my obsessive side run free. Aye, man-kid fun :joy:

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Agree, you can get many hours enjoyment versus a film.
I have a playstation and a switch. Have had many different systems over the years and brought up a very proficient gamer son (who fortunately also loves playing football and going to the gym).

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Ann and all are so right, this forum is a life saver it gives an open foru with no judgement al responses to even the most unimportant symptoms, thank you onean all.heafong to my two year pointin January 2023, not long and I can summarise my journey

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This forum is indeed a blessing. Thank you to everyone who sends such uplifting messages. All good wishes. Anne x