The ground hog world of stroke

I find after 16onths that the sameness of stroke recovery weighs heavily on me, no significant uplift in my impairment and no reduced pain levels.
Do people find the long wait till an acceptable new normal arrives frustrating, do you feel in general the long time span to recovery is making th situation more likforebearancerence than recovery

There is always a certain amount of forbearance, but I believe in staying as positive as possible, if you focus on pain and discomfort you will feel them all the more. Basically, I just keep trying. If you don’t, you are in danger of giving in. Yes, I have to live with some things and never quite lose frustration about being unable to achieve what I once did easily. But I will never, never give up trying to improve.

1 Like

Hi , yes I am also 16 months on and have to admit physical effects relative to other people are mild . However the emotional and fatigue effects are still a huge problem . Hardly sleep and when I do still so sleepy next day . Really is like groundhog day. But as the last reply just try to stay positive and hope for better days to come. Take care and try to do the same .

Thanks Jeff the best approach and as you have described so I have approached my recovery, however my stumbling block is anon functioning left arm and painful over sensitive left leg, the arm I passively exercise and the leg I push through the pain barrier, once these two issues resolve I can really get going with my rehabilitation and creat a new normal…

I have days when I get very frustrated that things aren’t moving as quickly as I’d like. My hubby usually then reminds me how far I’ve come in a short space of time - although to me doesn’t feel that short. I find that I feel like I’ve made no progress for ages then all of a sudden I see improvement. It then spurs me on some more.
Keep working at it. You will.get there. Xx

1 Like

Hi Lorraine, poor sleep is not good and plagued me early on , it is key to the brains repair process so seek support from your GP my wife gives me the same advice the problem is we all look at what we could do before not how much better we are after the stroke hit us . This gap is something we continue to do and makes recovery mentally
Challengeing.

Good luck to us all we will get there and celebrate our resolve.

Fatigue is still an issue for me especially when n walking stick or solo, improvement is coming but slowly.

Good luck everyone it’s a long game so maybe more up best in the coming months

1 Like

Shwmae @mrfrederickson, the Talking Heads song “Road to nowhere” sometimes pops into my head during these moments. A stroke podcaster recently wrote that recovery doesn’t end. That remark made me sigh to myself, thinking about post-stroke long term. Each stroke individual is bound to recover at a relative rate. Is then recovery the best word? I like to use progress, another stroke survivor I know uses the word, rebuilding. It’s essential to have things in life that give us pleasure, things that help ease the burden. I don’t really subscribe to the “new me” axiom, but I definitely feel the drag on a daily basis. And, I certainly, get exhausted by it all, not just neurological fatigue. I would love to be a ale to run a disk check on my brain and body, and have a read out of the data, so I could see exactly what is going wrong inside me.

That is why all medical people are so vagu because no one can accurately tell how much repair of the brain has The new me will be something as close to the old me that I am happy with it may take many years but I will know it when I’m there in the mean time I face my challenges and keep on trying.
I will not stop until my state allows me the life I want to lead. Just finished up at the gym totally spent having a brew and putting my feet up, willl feel it tomorrow nodoubt

1 Like

Hi @mrfrederickson try to focus on the positives, the progress you’ve made, it can be a long process.

Best wishes

1 Like

I do try my best to look at how far I have come then fail as I know how good I was before the Anyway will keep on trying til I find peace

Good evening @mrfrederickson. This waiting with no understanding of the end point is frustrating to say the least. There is a limited capacity to adjust and adapt to a situation we are encouraged to believe can get better but no-one can say to what point. When this affects your basic ability to function independently and support yourself it is a constant source of anxiety. The only thing we can control ourselves is just to keep on trying. This is no small thing. Do not under estimate it. It feels often like banging your head against a solid object but very occasionally there is a glimpse of a path forwards. All we can do is stumble along it and grasp that opportunity. All the best, chin up, Julia

I"m still trying to improve after 3 1/2 years. If I had given up at the 16-month point, I would have missed out on a lot, because a lot of recovery happened after that. You don’t notice the changes because they are so slow, so hang in there and keep trying. You say the changes have been insignificant. I kept a brief journal for about 3 years of what I was doing. Looking back, I see there have been significant changes that I didn’t see at the time. Some people have been helped with pain by the use of CBD oil. :slightly_smiling_face: :heart:Jeanne

2 Likes

Very interesting information thank you in my . The CBD oil is an option but not there yet. The one arm dressing is my biggest annoyance bar the pain a working left arm would be a game changer for me
.

Good luck and thanks for sharing.

Thanks for your thoughtful post
I know what you’re saying.
For a long time I struggled with the balance between recovery and acceptance, not fully knowing what it was I was going to have to accept long term. Just entering my 7th year post stroke and I’m more familiar with what I have to deal with day to day. I had hoped to recover more than I have, but even now haven’t abandoned hope that some things will improve. I’ve still got difficult mobility impairments and no function in my left hand. However it isn’t as bleak as it sounds. I can do a lot and I have a very good iLife all things considered. The spasticity in my left hand has reduced so that my hand isn’t continually tight in a fist. I can’t yet voluntarily open my fingers but I still do visualising work to will it to open. That will be a day to rejoice. I am carrying on with walking practice I don’t go anywhere unaccompanied now, and have settled into the use of a wheelchair so I can expand my range of activities. That was a big step and I haven’t looked back. Fatigue was a real issue in the early days but isn’t such a problem now. It hasn’t gone completely but is manageable. I 've learned how to deal with it.
I hope that doesn’t sound too grim. It just takes time and then more time.
But there’s stuff you can do to enjoy your life while you plug away at the tedious repetitive recovery exercises finding things you can enjoy is equally important.
I wish you well and congratulate you on surviving 16 months. It’s a good start! There’s a life to live.
All the best
TONY

Thanks Tony for your insight at 7 years some hope for all of us especially when we all have individual recovering brains the complexities are off the Most of us want mobility and independence and do some enjoyable things with our lives and I pray we all get that, Andrew Marrs recovery gives me inspiration as he is running and cycling 7 years in so hope is still there for us all keep on plugging away at it and we wil all get a fulfilling

Fully agree I struggle with perceivable Chang so let my infrequent visitors telll me what they notice my walking is improving after 17 months from nothing to drunk zombie the left arm has signs of life but nothing usable as yet so more effort in reprogramming it.

The large spans of time for what seems very little improvement is depressing me but I realize why just wish the brain healed quicker.