My son and daughter both in their 40’s have stepped up and refuse anyone else to help me. I’m so proud of them I wouldn’t be this far without them. I know what you mean, I thank them and they tell me off! They say we want to do it stopped thanking us
3 Likes
For myself I must first say that I regard my self as having been lucky. Oh not as lucky as not suffering a stroke at all but I “only” lost my awareness of the world to my right hand side. The “quick and dirty” way of putting it is to say that I lost my peripheral vision but it goes a bit deeper than that.
But Sue you are 100% right about the emotional effects of having a stroke! Even though I admit to being very lucky in my outcome have had some dark days, especially back soon after I first had it, around 18 months ago now. And as others have said not being able to drive really hurt, and still does!
But my wife is wonderful, even with my quite limited symptoms I don’t know how I would have managed alone. But all I can say is that we do tend to come to terms with the emotional side of things, even if the physical effects remain.
2 Likes
Thank you Peter Yes oh yes driving. It’s taken away my independence I was disabled before but my mobility car was my legs. My son is very good like your wife, but it’s nice to be able to pop in the car whoever ? I’m very grateful though . And yes dark times. I’m not as bad now but I do get down at times as I’m still dependent on my daughter for some of my personal care…that affects my mental health ya know? It’s good that after 18 months you’ve improved though, I’m not quite a year yet
2 Likes
I have so much empathy with what you are saying, I lost periphery vision and cannot drive anymore. I live on my own, so I have to rely on friends and neighbors for the simple things like a lift to the shop. No more independence where I could just nip out when I felt like it.
I know I should be grateful that I am alive but there are times when I don’t feel grateful, but I suppose that is the depression speaking. Though funnily it helps to find others on this forum are suffering the same things and I don’t feel so alone.
So, can’t offer any advice - as you can tell I am still learning how to cope with all this. Just know a that you have helped other people by sharing what you are going through. Believe me it means a lot to know that you are not alone with your problems.
5 Likes
Hi Sue
I completely understand where you are coming from.
It’s been nearly 6 years since my stroke. I have managed to return to work part time and I can drive short distances. I have a fair amount of independence really but life is so different. The thing that really upsets me the most is the fatigue and constant headaches. The planning of things is unbelievable. Too much stimulation, noise, too many people and just talking can have a detrimental impact on my health and whilst I continue to see how best to manage all of this, is does sadden me.
I miss out on so much. I miss out on family events and friend get togethers. I miss going to festivals and gigs. I am only 50 but feel like a pensioner at times!
I am grateful that I am here and I can still enjoy so much but I think we are allowed to feel sad for our loss. It is almost a grief of the life I have lost. I will continue to see if there are answers and solutions to minimise fatigue and head pain.
You are not alone and you you are not a burden as I am sure your loved ones would much rather change their lives and have you in their lives than not.
This is our safe space to get these things of our chest and know that there are others that understand and have a shared experience.
All the best, L
5 Likes
I believe it is a kind of grief…then we mourn then we have to get on with life differently, like a real grief it’s a real loss.its taken me almost a year to stop thinking (well not dwelling so much lol) of what I used to do and see that I am still the same person but with limitations now, it’s not an easy journey to go through and it’s not automatic or easy ..I hear what your saying and we are all at different stages in our recovery x
3 Likes
Four years on…I still get times when I find myself having a weep for what I could do and now can’t. I really miss fell walking. I can walk…with my stick, but I don’t have the pre-stroke energy to do the things I once did.
4 Likes
I know what you mean 100% in my head I feel I can do it and see myself doing it but the energy level is low, mines due to the fatigue so I remember another member on here saying set a few minutes and try not to plan too many achievements at once if you can’t then don’t beat ourselves up. I guess we need to accept(that difficult it takes time) and listening to our body. Look after yourself
2 Likes
Dear Sue. I am with you in so many ways. It easy to say I feel your pain but I really do. It’s a horrid way to be but I sometimes wish those who pat you on the head and offer solace could experience for 15 minutes what I endure every day they may have some small sense of our eternal battle. It’s how to relish the minor victories while accepting they don’t last long that get us through. I have a book out next week that explains my personal experience and I hope it may inspire.
https://www.waterstones.com/book/brushes-with-a-stroke/neil-harman/9781836801474
Very best wishes Neil
3 Likes
Just looked it up on Waterstones, how inspiring this will be. I will add it to my media platforms if that helps, I’m a book blogger and reviewer so I’ll be able to aim it at others in my book community if you like?
2 Likes
That would be awesome Sue. I’ve tried to come at stroke from many different ways with personal testimonies from athletes great and small. It’s a life changing experience in so many ways but as one of my interviewees said : ‘it’s my life now and I have to deal with it.’ Bless you Neil
3 Likes
I’ve added to my instagram but I’ve over 4,000 followers on X (Twitter) so did there also. I just hope it helps
https://x.com/ReadAlongWivSue
1 Like
It’s true thou, it’s our life now and we have to deal with it no matter if it sounds harsh.my dad long passed nowhe had one leg, and a heart condition he just got on with it, learnt to walk on a artificial leg etc..learnt to drive an adapted car…sat on the grass when digging to plant flowers asked us for help when he needed it, and I’ve been thinking a lot about his attitude lately. It’s dam hard init! But not impossible I guess. Looks like that book has plenty of inspirational people
2 Likes
I found very much the same thing when I suffered a blood clot in 2019 aged 69.
Although I was fortunate in that i was given the clot busting drug within a few hours.
I have remaining issues but most don’t see them, fatigue, poor balance, struggle in busy places, muscle weakness in my left side.
I am lucky in that I am a stroke survivor, i drive, go to the gym & drive whilst abroad, all managed within my limitations.
2 Likes
I totally relate. I got my mobility back very quickly after getting a thrombolysus drip but i now have crazy light sensitivity and my speech is better but not as good as it was. I am back to work but may have to change roles as not sure i can do my old job with my speech and cognition issues. I also have massive fatigue issues. I used to love fitness. Played golf, had done crossfit, ran marathons and now it takes me all my time and effort to do 10 situps. Gonna keep pushing though. We have to stay positive. I am so sorry you have been through this horrible experience and now is about finding what you can do and focussing on that. Still lots of joy and fun to be had. Just in a different way.
4 Likes
Have you considered doing isometric exercises?
I am pretty sure you will have heard of these.
As I understand it, they are actually supposed to be better than the other equivalents e.g. your 10 sit ups.
I like doing the plank and squats.
I too miss my golf, but hey c’est la vie! as they say en Angleterre 
3 Likes
Yeah doing slow full range squats, knee press ups, walking, some slow yoga style movement and I have a riser desk for work so do lots of standing which isolates the core and is good for legs. I stand on one leg to build the connecting tissue and small musscles to help my balance on my gammy side. Still lots i can do, sure to miss a good old fashioned sweaty run though.
3 Likes
Wow!
That is way more than I’d manage. You must be super fit!
Keep it up and I expect you could easily be out on the fairway soon
Did you play off a handicap?
2 Likes
No, no handicap. I got the highest when I played in my monthly society games. I was rubbish but loved it. Played every couple of weeks so never really improved. Plan to go to the driving range soon to see how I go.
2 Likes
That’s amazing. I can’t do half of that yet
1 Like