@John04
You are doing amazingly well! How lovely.
On the tv question I never watched it much before stroke May 23. I was always too busy and more interested in doing other things.
Now I watch it all the time it’s soooo boring, unfortunately I have terrible fatigue, so activities are very limited nowadays, I do try hard, but hobbies gone.
Though it’s good to hear from someone who has found it possible to get back to doing things!
2 Likes
@JokerBliss I found it very interesting to read you say you had CFS/ME after stroke, I’ve had terrible fatigue since stroke May 23,
I wondered how did you get this confirmation rather than just post stroke fatigue. I am struggling with fatigue it has ruined my life and hasn’t improved at all.
1 Like
Thank you, I’ve found I’m more happy keeping busy, like before my stroke and now I can drive again, I go off on my own doing things, I even manage to wash and clean my car myself, with one good hand, I like doing especially when it’s nice weather . I hope you can find a hobby again, I’ve learned to adapt and be happy, take care John
2 Likes
Your welcome Annie, your not alone, my stroke was over 7 years ago, I’ve learned to adapt and be happy again, I try my best, take care John
1 Like
Thank you John, I received a post with foot drop excercises which look pretty good, will definitely try. If I can manage to make progress I am really looking forward to the day when I can regain my licence. That had to be the toughest challenge, losing my independence. But it makes you see life differently and it has brought me closer to my brilliant friends, who really stepped up. So swings and roundabouts, life can be richer on some counts. 
2 Likes
Hello,
So sorry to hear your going through this. Unfortunately it was not easy I first had to get a neurologist appointment. This was done through GP referral. I then had numerous tests including liver biopsy, heart testing (dye test) and fibrillation test/monitoring. Many many blood tests. When they all came back clear I then had to get referred back to neurologist through GP waited a year and a half for the appointment and from all the evidence in front of them and my still current symptoms I was given a diagnosis CFS/ME with aspects of Central sensitisation syndrome as I get random unexplained pains. I would just like to stress to you it been a frustrating, emotional and wearing fight that is still not over. I can only work 2 days a week and even with my diagnosis the DWP are avoiding reassessing me like the plague. Unfortunately the system is broken, the NHS is on its ass and genuine people who have worked their whole life and are in real need are overlooked because we are not in the system…whatever that means. I wish you all the best, but lace up your boots put on ya gloves and prepare to battle for the answers. I wish I could be more positive for you but I’m not a liar. Took me 4 years to get answers and apparently that’s quick. 
4 Likes
Hey Jokerbliss, so sorry to hear of your difficult journey, I certainly can’t complain, thankfully I do not suffer with any pain, but I do have AF which we have to live with, it can come and go, but as on the right meds now, I have been assured I will not have anymore clots 
meaning I should never suffer another stroke take care, chin up look to the heavens and never down 
2 Likes
@JokerBliss thank you so much for your honest reply.
I’m going back to GP soon and hoping to discuss it.
1 Like
@JokerBliss - thanks for sharing your experiences here. Unfortunately, your experiences are not an exception and it is a huge shame when honest genuine cases are not given the fair support that is needed.
As you say the system is broken and it very hard to get the help you need when there are so many hurdles out in your way.
All credit to you for being so determined and “fighting for your rights”.
Perhaps you have thought about this already, but as you seem to have been suffering and waiting for such as long time, is there any way there can be some escalation?
4 years to get answers is ridiculous and perhaps you can get your MP involved?
Sometimes it can be hugely frustrating when you keep getting pushed back, but you have to take a deep breath and keep going.
Well done on achieving all you have already achieved and wishing you all the best.
Namaste|
2 Likes
Hi John, I had a bleed on the brain in 2018 and luckily I’ve not done too badly! Fatigue was awful for 6 months but then I walked ,with a stick ,
it gave me more confidence ,my left arm still feels strange at times. A positive mindset made me keep trying.I had a tia on Dec7th and that knocked me for six.Building confidence is not always easy.I think you’ve done brilliantly.Well done.x
2 Likes
Thank you for kind words June, i hope you are improving after your Tia in December, especially after your stroke, but pleased you keep trying, my left side is still numb, but i try my best i like walking with my walking pole, although I’m slow, especially driving again has been good for me. Take care John x
2 Likes
Hi John thank you for your lovely reply.Yes driving again it brilliant! It gives a sense of freedom,doesn’t it. Are you having physio for your arm? It all takes time. Take care June x
3 Likes
Thank you June, its nice to listen to others, I’m a quiet person. My stroke took a lot from me, but I’m slowly getting things back better. I don’t have physio now. I’m happy going to the gym on my own again and take the advice i learned. I have my volunteering work at the wood workshop every Tuesday. I go to where i worked before my stroke once a month or so to help a little with things i can manage. I really miss working like before. I’ve learnt to be happy though. Im proud of that. My left hand is still nunb, doesn’t get me down though, even though I was left handed before. Take care John x
3 Likes
@June_P so sorry to hear you had a TIA in December. I hope you are getting on ok after it & it hasn’t knocked your confidence too much.
Best wishes
Ann
1 Like
Hey John, My Stroke Brain Bleed was April 2024, some a bit better, Tired for me is common, I do use youtube to help re learn Stuff, I found some old coins I have and better now to find out more now about this so joined a new forum , writing down the information of each as I cant remember all of this, I had a game going of Battle Ships over nov into dec… to be fair it was going on so leave awhile before going back for another game. stay safe laters “H”
3 Likes
Thank you Ann.It knocked me for six,but getting back to normal now.
Best wishes June P
3 Likes
I hope your recovery is going well. I prefer you tube myself, i guess its because i can concentrate better on shorter videos and learning is great like you. When i drive i know i got to concentrate, thank you for replying . Take care John
2 Likes
The first time I drove was only 10 mins and I got home and slept for an hour. So much brain power to concentrate on so many different things at once. You don’t realise
2 Likes
It’s very tiring to drive with one hand and concentrate, I’m getting back my confidence better, can’t drive too far. Thank you for message, take care John
3 Likes
I got off very lightly John in comparison with the majority with physical disabilities. I am trying to sift what is stroke related and what is my anxiety, which has played horrid tricks on me for years since I retired. Having been a nurse when I retired 20 yrs ago, means I know too much:rofl:
3 Likes