Hi, first time ever done this so sorry if this doesn't make sense. Being advised to reach out as feeling so low and even though I have family and friends feel so alone. Had a stroke on a plane approx 17 months ago since then I have double vision in my right eye, constant headache that has never gone, struggling to concentrate and focus and the fatigue is something that I could never have imagined. Any exercise or activity completely shatters me out in bed nearly every day in so much pain. My issue is with coming to terms with my life as it is now and was hoping there is advice out there please. I used to work 10-12 hours a day, go to gym, great social life with wife and kids but now I cannot do any of these things, all I get from the stroke doctors is " you shouldn't be like that" but I am and I really don't know what to do or how. Anyheop, guidance or support would be so much appreciated
Andy, I am very sorry for how the stroke has left you, but you are not alone. I know it sounds stupid, but 17 months is not long ago. I am four years post stroke, but still get fatigue every day and need an hours nap at noon. The fatigue hit on my first day home from hospital. At first it required several hours a day in bed, but this has reduced to one.
Stroke has both a physical and mental impact. Unfortunately, the medical profession is not as supportive as it could be, but at the moment they are under intense pressure due to the virus. Support also varies from area to area, but,again, due to the virus, a lot of back up like more physio is not available.
I am much older than you and thought my stroke was the end of my life. Although I accepted it, I still miss my old life and still have down days. I push through these though and try to be positive. I still have ability problems as my left hand lacks sensitivity and I now walk with a stick. My walking is better some days than others. I have exercised every day since the stroke and worked my way to a reasonable level of fitness. I now cook, bake and do some limited tasks. I have found you have to start somewhere and then move forward. Swearing helps, but so does the ability to laugh at yourself.
I still get twinges in the head, which ring alarm bells but are usually nothing. I think our post stroke bodies are ultra sensitive. I also take each day at a time and never stop hoping for more improvement. However, being old, this may not come to the level I would like it to be.
Finally, can I wish you well. Although we may have families and support systems, only a fellow survivor can know how another survivor feels. You are alive, you can make progress, so hang on in there!
Hi Andy, John has given you sensible advice, as someone who has been there and battled through several years to gain his recovery. I think it shows just how little stroke is understood, and how little (relatively) is known about life post-stroke, by those we would usually seek help from. GPs and even stroke consultants don't always have answers - so much more research into stroke is desperately needed, as it can affect old/young, fit/unfit, etc.
It's a very good thing that you have a supportive family, but we really don't know the sensations you are experiencing. We see the results of the pain and fatigue, but feel helpless to know what to do. As JJM has said, currently much of the medical profession has one focus! however, this is something you should take up with your GP, and have a referral to a stroke specialist, as there may be something that could ease some of your symptoms, and enable you to feel better. Sometimes meds may need to be adjusted or changed - not everything suits everyone, meds should be reviewed.
It is good that you've found this site, you will get support and friendship, many will offer you good advice and just knowing that you're not alone is reassuring.
Take good care, and know that people are thinking of you.
Hi Andy - sorry to hear of your stroke. To have one on a plane must have been terrifying for you. I am 3 years post stroke in August and still improving. My biggest problem in the first couple of years was also horrendous fatigue. In the early days, I would go to bed every afternoon after lunch and then go to bed early - 6pm some evenings as I just was utterly exhausted. No amount of sleep would get rid of the exhausted feeling. Like you, I was fit and healthy and went to the gym 3 times a week. I had my stroke the day I'd been to the gym. Everyone's stroke is different and everyone's recovery is different.
Gentle exercise is crucial though for your recovery. I used to count lamp posts. Walk from the end of the drive to the first lamp post for a week. Following week, I would do 2 lamp posts. It's hard work I know but stiffness can set in and be hard to get rid of if you don't move around. If you can phone your GP and explain how you are, they may review your medication or send you for more tests or another scan. It does get easier as time goes by but you sound like you really need some help right now.
I think that around 18 months was about the worst time of my 52 month journey Things do improve and we should never give up.
GPS really should not be dealing with us. They don't have the time and maybe dont have the training
My GP did his best and I worked out that if I explained one problem then he dealt with it. It was too easy to tell him about the stroke generally and not the specific thing.
Your headaches sound to be far worse than is logical. No doubt the fatigue and vision are just piling on the agony.
I don't get many headaches post stroke. In fact I get far less than pre stroke.
My big problem is the fatigue. However, after many months my GP Sussed that it wasn't anything to do with stroke, it is a heart problem. I carefully considered exactly what the fatigue was like and he then acted fast. I am writing from the cardiac ward of a London hospital as I am this week having a heart op.
I wonder how many of us have different issues masked by stroke.
Hi welcome aboard the journey, everyones journey is different, stroke fatigue is something that I think we all suffer with to varying levels. As I said in my previous post to another stroke survivor I think it would help for you to ring the stroke helpline and see if there is a coordinator in your area. I found that mine was a great help from just listening to practical help. Each day is another and we are still here, listen to your body and good luck, come on the forum to rant or get advice anytime we have all been there. Wendy
Speedy recovery Colin. I wrote a post earlier sending you all the best but somehow it's gone missing :( Anyway - rest, relax, and no chasing all those gorgeous nurses around ;) !! x
Thank you. All the staff are in space suits so not able to chase them. Tests are all good so the op can go ahead. Very probably Saturday. Then a week in recovery then home. I will then have to let Rosemary do all the work for 6to10 weeks. I guess its a good time to be out of action but its so hard being in isolation and no visitors.
Thank you. All the staff are in space suits so not able to chase them. Tests are all good so the op can go ahead. Very probably Saturday. Then a week in recovery then home. I will then have to let Rosemary do all the work for 6to10 weeks. I guess its a good time to be out of action but its so hard being in isolation and no visitors.
Thank you John. It is very hard and lonely. I like to think that I am losing a couple of months when those months will be poor anyway.And i refuse to have spent years getting through stroke only to cave in to a worn out valve .
Colin, I think you will have to give yourself one of your encouraging talks!! Boost yourself and look into the future, because the minute-by-minute is not very nice. However, hospital time is like some strange timewarp. It feels painfully slow, but suddenly another day has passed ? ?, one day further on and closer to going home to the one you love, Oscar, and everyone else!!! I'm sure you will charm all the doctors and nurses, and they will be at your side chatting away and making sure you are as comfortable as possible. I'm sure they will enjoy the distraction from the current situation.
I'm amazed by the specialist medical teams - my husband has had mitral valve surgery twice, and the technology and gizmos that are used are simply mindblowing. So lucky that we live in the 21st century and these options are available to us.
We are all cheering you on - we'll give you a special clap on Thursday evenings, and thank your medical team for their care and expertise.
Many of us will be in solitary confinement during the current lock down so it is important to make contact with others using internet,phone,text and talking to neighbours ( keeping 2 metres apart )
Try and fill time with activities,learning new cookery skills,spring cleaning etc.
I have kept myself busy doing all those little diy jobs that I had never found time to do.
Yesterday I stripped down my oven ,cleaned it and then put it all back together.
Looking at my shiny clean oven today gives me a sense of achievement.
Try and keep a timetable fitting in a break for lunch and a break for an evening meal.
I keep the radio on during the day as I can listen whilst doing things.
Hi Andy
I can relate to what you have written having experienced many of the same feelings myself.
I had a stroke just over 10 years ago and the first 18 months afterwards were dreadful .
I worked in the ski holiday industry in France and the stroke left me with poor balance and damaged eyesight.
With hindsight I was probably suffering from depression and shock at what had happened and the devastating impact on my life.
I had to give up my driving licence which made access to many things impossible.
Slowly I have improved and have found different ways to access things.
I was able to return to work ,in a part time easier role capacity after 2 years and have slowly managed to do even more.
I have taught myself to ski again ,adapting my technique to my poor balance and reduced field of vision
There is life ahead ,but it will be different to the one that you anticipated.
Make the most of what you can do
Good luck and remember you are not alone,you have the support of others.
Ultimately after two mid 2018 strokes it feels tough I try carry on as normal but the second I'm aware of was quite hard as I was at a festival it ended the same day (I was told my first stroke wasn't the first one) so my legs were taken from me that day and still aren't fully back don't know if they'll ever start working fully again I hope but no idea.