I am Ian and this my stroke story - or at least the bits I can remember…
It all started at the end of March 2023, a couple of weeks after my 75th birthday. Woke up one morning with a numb left arm - I thought my other half Jan was laying on it, but she replied no, so I said “maybe I have had a stroke”, although I was only half joking.
Next thing I can remember was laying in a strange bed/room and she was sitting at the foot of the bed smiling at me, although I think I could detect tears in her eyes. Turns out this was towards the end of April and I was in the Stroke Unit at Stepping Hill Hospital in Stockport.
Spent the next two months in the hospital, mostly being bullied by those I called the ‘physio nasties’ into doing things to get me mobile.
Eventually they managed to bully me into walking, initially with a frame and later with a stick.
Was allowed home at the end of June and have had regular visits from members of the Physio and Occupational Therapy teams.
Gradually trying to expand the range of things I can do, but have found it to be quite a struggle. I have a week or two of improving but then it seems to level off or even gets harder to do those things. Main problem is that if I do too much for too long, I get really bad ‘brain fog’ and fatigue and have to have a rest for a day or two.
Everyone says I am making great progress but somehow to me it doesn’t really seem that way, and I as a result I get somewhat depressed. I think the problem is that my expectations somewhat exceed my abilities.
I guess this is all part of the Recovery Roller Coaster.
Welcome to the forum although I am very sorry you had cause to join us
You’ll find a great many posts similar to yours and your profile if you continue reading through what others have related. You’ll also find a friendly empathetic knowledgeable group here where you can share your victories and frustrations and ask questions .
From memory it covers or signposts to all the things that you have raised But if not searching with a magnifying glass above for keywords will certainly find things and asking questions directly will always elicit a response. It will highlight things you have probably not been told like the challenges that can arise between four and six months post, the two steps forward one step backwards challenge, it has a little to say on fatigue that you say has hit you - you’ll find the strategies of others to cope with that within the topics on this forum
If you share your victories here and progress it will not only help uplift others but will become a record that when you look back will show you just how far you have come. It’s not always easy to appreciate the progress you have made - perhaps that is a little of the deficit You are feeling in your progress ?
Hi & welcome to the forum @IanW sorry you’ve had a stroke. Sounds like you had a tough time initially as did your other half. She must have been really worried during that first month.
The fog & fatigue you describe is very normal & it does sometimes feel like you’re not progressing / are regressing. Stroke recovery is definitely a marathon not a sprint & managing expectations is a big part of the recovery journey. I kept a diary of how I was on a daily basis & this really helped me on the days I felt like I was going backwards. I’d look back at it & could see the progress I had made.
During the 2nd and 3rd months of my stay I tried keeping a diary - just found it and a quick scan of the entries it quite interesting.
Most of the early entries are recording the food and my reactions to it - I guess that when you are spending almost 24hrs a day in bed there is not much else to record, apart from noting when I had a poo or pee.
Sounds to me as if you can notice a difference in what you’d write today and that must be progress
Well done on the progress to date
Progress will always follow effort to achieve it - not always obviously, often slowly But it is there
Have you got any specific goals?
For example when I came out of hospital one of mine was to repair the leaking roof of my shed.
To meet that goal I had to be able to climb up on a ladder to get on the roof (much my wife’s horror when she came home to find me up there). That meant I had to get my leg working again and enough balance to tackle a ladder and enuff confidence too to
I also needed some roofing paint and I wasn’t going to be able to clean the brushes one-handed so some cheap throwaway brushes and that latter stuff was easily done with eBay. The former took a while - incrementally working on the challenge which was eventually solved with two ladders and a very long very stout stick.
Another one was to be able to do light switches, doors and eating right handed.
I started with sliding door of the shower. It was more than I could do!
Now I can do a door with a door handle. I can do light switches
I haven’t yet got to the point where I can hold cutlery but I’m on the way
Ciao
Simon
That was some goal when you came out of hospital @SimonInEdinburgh mine were more along the lines of being able to stand up and get the toothpaste on my toothbrush .
@IanW sounds like you’ve made some progress if your diary entries have moved on to something other than food. I found a diary really useful……it’s not for everyone but did help me on my down days.
I guess it was some goal
I built a pergola after that one handed.
Since then I’ve trimmed the trees growing around the lamp post at lamppost height yet another ladder!
Repairing the roof of the house is a different matter though! I’ve got three quotes for that. One is four times the size of another! But that’s a different story
My main point is that when I spoke to OTs and PT’s and they told me I had to have goals (something I very familiar with!) They didn’t really understand what goal setting process was in visceral terms for me.
I’ve got some undelivered goals such as the brushing the teeth one. This morning I noticed I had markedly more grip on my toothbrush handle although my thumb will still not exert consistent pressure against the handle and my index finger - still a work in progress and that’s before I get to the dexterity to swap from teeth on the left teeth on the right which requires swivelling the brush round - all of these components I call inch pebbles because they’re on the way to milestones.
It’s about picking a point on the horizon and then doing all the necessary things to achieve it
some of which are exercises. some of which are other forms of preparation But they are all necessary.
when that spot on the horizon has become something in the rearview mirror - so passed, having new ones
Ciao
Simon
I started setting goals from early on - the first one was to walk out of the hospital!
The stroke unit at Stepping Hill has a long corridor with wards and offices etc either side and the tradition is that when someone is discharged all the staff line the corridor and clap them out and it also allows the patient to thank them.
Somehow my pet physio-nasty Angie managed to persuade me that I had to walk that trip as opposed to the more traditional mode of being wheelchaired out. I think this was because I had threatened to walk out every time she came round to cart me off to the gym…
Come my discharge day she tried to persuade me to do it using the stick, but I decided I didn’t want to risk making a fool of myself by falling over in front of everyone, so I used the walking frame.
I have continued to set myself goals in the almost 6 months since I came home but I am not sure I would want to attempt painting the shed roof, although I do have an on-going ‘shed related’ goal in that I want to try and complete the 1/12 scale model diorama of ‘men in a shed’ that I was working on at the time of my stroke. As this requires scratch-building the shed it has been quite a challenge using ‘one-and-a-bit’ hands but I keep telling myself it is good exercise for my dodgy left hand.
@SimonInEdinburgh you’ve achieved a lot and definitely braver than me. I’m avoiding ladders…mainly because I can’t lift my foot off the floor. It does limit me a little
It’s good to have goals to work towards. Getting back to running was one of mine. Not posdible right now for same reason as ladders. I’d take being able to lift my foot right now then i’ll set my running goal again
Hopefully the toothbrush challenge will soon be achieved for you.
Oh fudge I think we missed a celebration there, for walking out the hospital.
Anyway, belated welcome to the gang no one ever wants to join
And hey, you must be making progress if you’ve managed to get on the forum, that was your first progress test, and you passed Took me over a year to get on here and I’d long forgotten the reason why
Joking aside, you’ve had quite the journey to get here and I’m so sorry you had a stroke. The fog and fatigue are common, for me the fatigue went within the first 6mths, the fog took longer. Cognition only really improved in the last 5mths. I doubt I’ll ever return to my pre-stroke days but I can certainly live with what I’ve got, which is a lot more than many on here, so I won’t complain
You’re going to have to post a pic of you diorama, I love anything in miniature like that…but I was never nimble fingered enough to build anything like that myself
Hi @IanW
Sounds to me then like you’re on the pathway that the rest of us are on. you just need to calibrate progress rates versus your own achievable .
I’ve been doing a lot of one and a half handed things - used to be one handed, I’m ramping up to one and three quarter handed
Take me 3 years but my progress rate is unlikely to be yours. You may be much faster or much slower.
You You might find it useful to get more understanding about recovery which is possible in the first 6 months ish and neuroplasticity which is the building of new capability and is ongoing and requires the different approach to developing
Would love to see pictures of your diorama
And My wife and I call them physio terrorists. I hope you’re PT wasnt nasty to you?
Hi Ian yes I feel like you at times. This journey is very much 3 steps forward then 3 back! Just keep on with everything as time will make a difference. I am a year post stroke and still do all the exercises etc and I can now walk much further than I could and feel less tired. I’ve learned there is no quick fix. The brain takes its time to re wire. I’ve started going to strength and balance classes and I’m noticing differences so give it time and never give up hope. A very merry Xmas too you and your family.love Suzywong xx
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Took me over a year to get on here and I’d long forgotten the reason why 
