This is me

On a positive note I have found this forum. I’ve been reading and trying to make sense of this new world I have found myself in.

I’m 55 was running 3 times a week and swimming, working in health care and looking after my family.

That was until early June, I’d felt really unwell in May, blood tests were normal Gp spoke to Neurologist who did not think it was anything sinister. Lost vision in my right eye twice. I was sent to TIA clinic as I had right sided weakness, and I noticed facial droop. (No one had noticed my face as I work with a mask on). Yes I’d had a stroke.

I have been fortunate to have some rehab and my right side is stronger but still feels like it’s been cut off and reattached. Fatigue is hideous and I have been spluttering food and drinks. I’m now on thickened fluids and soft food until I have the X-ray swallow test. Keep finding other bits of me that seem to be wired a bit wrong to since the stroke.

I feel like a shell of myself, cannot visualise who I was before or what that world looked like. I know its early days and I can see from here that I am not alone on this journey. Well thats me…

Welcome Feisty. You post will chime with many of us who thought ourselves quite fit and able. You sound feisty by name and feisty by nature and that will stand you in good stead.

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@Fiesty55 welcome but sorry you had a stroke. Like you I ran 3 times a week before my stroke. It’s something I’d like to get back to but need to be able to lift my leg first :rofl:
You are very early days into your recovery. Take all the time you need & be kind to yourself. Fatigue seems to be a common thing amongst most stroke survivors. Listen to your body & rest when you need to.
Hope you get to see someone about your swallowing soon so you can get back to eating proper food.
Look forward to hearing how you’re getting on.
Best wishes
Ann x

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Hello @Fiesty55 and thank you for introducing yourself. You are still very early in your recovery although I realise it doesn’t feel like that. I had problems with my swallowing even after I came home at 2-3 months. I learnt I really needed to take my time. I was used to eating very quickly, but trying to swallow too much just didn’t work. Fizzy drinks completely flummoxed me. It’s maybe not 100% a year on but improved and I think mainly because I won’t rush now.
I really empathise with not being able to visualise you before. I struggle with not recognising myself to feeling alienated from society that I no longer understand my place in. I realise I need to find a new place, not good or bad but certainly different. Wishing you well, Julia

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Welcome @Fiesty55 . I’m hoping my experiences to date may provide some hope to you and to others who unfortunately have just experienced a stroke or, in fact, any stroke survivor here.

“Have you recovered fully yet?” A question asked by a friend who hadn’t seen me for a while but knew I had a stroke recently. How do you answer that? From reading the stories on this forum, it may take a long time. But I thought I would try and spread some hope amongst other sufferers to show that there can be light at the end of the tunnel. Even if that tunnel may be long!

I had my stroke in August last year. Caused by a blood clot and off the scale BP. I woke up and just fell out of bed as I lost all control down my left-hand side: arm, hand and leg. My two main passions up until the morning of the stroke were daily running and playing keyboards in my band. Both seemed to be off limits as I lay there in the hospital bed wondering what had just happened to me. I had 2 weeks in hospital whilst the doctors tried to lower my blood pressure and get me to walk even a few steps with a frame. They finally let me out and I was lucky to be handed over to a rehab team that do home visits to help with my exercises etc. Invaluable. First 2-3 weeks I used a 4-pronged stick to walk around the block (50 yards), then graduated to being arm-held by my wife for another 3-4 weeks. But eventually went solo with a single walking stick for a very tiring 100 yards. Bit by bit I built up the length of time I could last without a stick and falling over and now can do about 2 miles which takes me 45 minutes. I need to sit down afterwards for a good 15-20 minutes and am very wobbly though. Before my stroke, I ran every day and ran 5k park runs every Saturday. I did have the aim of being the fastest in my age group (over 65s) in the park runs. But it may take me a long while before I get back to those!! I am just pleased I can walk, although still ungainly. However - I still can’t walk in a straight line, or run without clipping the ground, or hold my left arm straight up.

With regards my arm and hand. An early achievement after 4 weeks or so at home, was being able to cut my food up. Initially I couldn’t raise my left arm above 90 degrees – it’s now up to 170 or so – not straight yet. So further improvement needed there.

But after lots of exercise with the rehab team (plasticene was a good one, to stretch out my fingers individually) and my own exercises I thought up myself on my keyboard to re-train my brain, I can now play again to an extent. Enough so that my band mates don’t worry about what I’m playing. However, the dreaded fatigue kicks in quickly, as I am concentrating so much on getting my fingers to play the right notes (at the right time!) – it really takes it out of me. My brain hurts! So much so, I have agreed with the band that if we have gigs with 3 sets, I will drop out of the 3rd. And any songs that really need me to concentrate, we put them early on in the set. I can’t manage the PA yet (either lifting or car loading) – it’s too heavy and cumbersome and I find I can can’t walk and carry (I would trip up!) – so someone else will be taking over that task in the band (I have been doing that for over 20 years). But at least I am playing.

Driving – it took me several weeks before I ventured out in the car to drive. I had lost all my confidence and was worried I couldn’t handle the gear stick (left arm!) or react quick enough in situations. I eventually got the green light from my GP and the local Rehab unit conducted tests on me to determine if my alertness levels and ability to do two things at once were not impaired. They used something called the Rookwood Driving Test. A series of timed tests/pictures/ exercises to check you out. It was sort of fun but only because I seemed to be performing OK. I think was 3 months before I drove with my wife alongside and 4-5 months by myself and still only do maximum 30 minutes or so. Night driving is still a challenge but I only drive on known routes.

Fatigue - I had to give up work back in February as I couldn’t manage the afternoons without needing a sleep. So I have retired completely. And I have to plan my day around that sleep, so outings or meeting friends and family have to be timed right. But I am getting better. It seems I have three causes of fatigue: physical (exercise or just walking), mental (doing stuff on the computer perhaps or playing music) and social (interaction with friends and family). They each can hit me at different times. Not worked out yet which is worse and which needs more sleep to recover.

Some other successes, which I couldn’t manage in the first few months (maybe small, but they are successes!):

Cutting up my own food.

Mowing the lawn

Sorting out the weekly rubbish (3 bins and sacks)

Cleaning the bathrooms

Went up the loft ladder for the first time last week

Walking up stairs holding a cup of tea without spilling (downstairs is more troublesomr!)

So, back to the original question: “Have you recovered fully yet?” – No , but I’m getting there!

Good luck everyone and keep positive (it really helps).


@Retrokeyplayer thank you for sharing your story. It’s really great to read how well you are doing. Some of the things you mention resonate with me & I’m sure others. Positivity is really important in a stroke journey & I try to remain positive but do get the odd blip. I’m a long way from getting back to running as my left leg just won’t it’s told :rofl::rofl: but I’m happy I can walk albeit in a clumsy fashion.
Thank you again.

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Thanks @Mahoney. Best wishes

Thanks @Mrs5K . Same with me and my leg and clumsy walking!

Thanks @Loshy Loraine. I’ll keep at it - not in this heat though!

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