I had that while in rehab; even getting out of bed and eating a meal, or showering & putting on clothes wiped me out. My whole body would be heavy. When I would go home to visit, my husband would ask me why I breathe hard from the car to inside the house? He would sometimes say I am not doing enough exercise, and to do more. I finally told him that this experience has been the most difficult of my life, and if he couldn't be supportive, I WILL find someone else to spend time with, and I say this to the other people in my life who think I'm not doing enough to "GET BETTER"!!! That's more tiring than the stroke itself!!!
My sister once asked me why I breathe so hard. I told her I was tired can't they just see it. Annoying. I'm feeling depressed now cos I lost my apartment. It was demolished while I was in the hospital. The thought of that along is draining. Right now squatting in a tiny space with a friend and it's so tiring. Huh
I feel you , honestly sometimes I just hope I don't wake up, I'm not scared to die, people don't understand at all, I also hate when my wife is like your doing so great when It's taking everything I got just to take a couple steps
My son and dad would call me lazy. My depression and lack of energy caused my son to leave to live with his mom, and it literally left me feeling even more broken
I have a 3 month year old and my entire life is wild now! I’m almost 2 months post stroke, I can walk, I just can’t do the basic things, I try everyday but for whatever reason my hand is not responding well, I will not give up tho! I don’t have a choice!NEVER GIVE UP!
Oddly, I've found myself really tired, and I struggle to do more, but my children are telling me to chill and take it easy. But I've been hard on myself because I can't do what I feel I SHOULD be able to do. In other words, I'm harder on myself than others are on me. Thank you for letting all of us know that what we're feeling is normal and OK.
I feel like my legs are full of cement and I can barely move them every day. I’m two months out from my stroke and I’m doing home health rehab OT/PT. I also did two weeks of inpatient rehab. I sleep 9 to 11 hours every night and sometimes take a short cat nap during the day. I don’t feel like I can get anything done. This Nurofatigue is real people. It’s no joke!
Thank you for this. I had my stroke January 2, 2024 and while my physical recovery has been remarkable, I’m dealing with severe fatigue. Add agoraphobia that I’ve been dealing with for a couple of years now and going out and doing something like grocery shopping or appointments is utterly exhausting. I do take two naps a day and if I miss one or take it later than usual I feel it for days afterwards. I’m glad to hear that I’m not the only one and it’s completely normal. Thankfully I live alone so if I ignore a chore or find I’m too tired to shower for a couple of days it doesn’t impact anyone else.
Thank you for a great video. It really hit home. 2 years post stroke ( actually had 2). Fatigue is the main problem I deal with every day. I also have chronic vertigo. Some days it's disabling. 3 things I have noticed that help me are, proper sleep, proper nutrition, and the right amount of exercise or activity. Spacing out tasks and frequent rest is the key for me. I listen to my body. When it says, rest, I rest. A short rest will give me the energy to finish the task. If I don't accomplish everything, oh well, there is always tomorrow.
Wow!! I couldn't understand why I had a funny head feeling and I have to sleep straight away.. may only be for 20 minutes to half hour .. I don't feelnguily after hearing this. Thank you. 💝
I have found aerobic exercise v helpful for energy, alertness and physical strength, power. I’m not saying this is right for everyone, we are all individuals as indeed, our stroke is individual. However, for me a visit to the gym really works and lasts for 2 or 3 days. Following the rule of ‘a change is as good as a rest’ during just an hour at the gym I spend a few minutes on a machine for my arm strength, change to legs, pop on the cycle for 10 mins. Then back to the arms and legs….keep changing don’t overdo one of them…. Then onto the cross trainer for 10 mins. I have to walk and bus it to and from the gym so need to factor in the energy for the journeys. The final thing I include throughout my hour is a few moments recovery here and there. Never drive myself to strain or pain. I do feel the aerobics on the cross trainer and bike help as they are getting the heart and lungs working, pumping the blood throughout the body and the brain where oxygen is needed. You know instinctively, what’s too much, your body tells you, I always stay within my limits as I find them growing.
You hit this subject right on the spot! Because my family is exactly thinking this of me! They're used to My old self that I was a working machine and demanding so much and now recovering from a Stroke I've told them let me recover and it's like I tell them to demand more of me they just don't get my "pains"they say I've had broken bones and I'm like it's totally different but I'm thankful to God 🙏🏻 for giving me the joys of having this Stroke happen to me and not any of my family members because they would be a horrible mess they'd be hating life and questioning God "why me"! But I'm the Most thankful and happiest person Alive because of this Stroke! Thank You again for this wonderful video. Have a wonderful and blessed weekend 😎
It's hard. I have been called lazy. Thank you. I got to put in grace and quit being so stubborn. It is hard to ask for help. In my mind, you see me struggling., but I disgress..I want the help and I have to ask for help
I had my stroke a month ago. I have found neurofatigue is very real in my life these days. Setting boundaries with others is so important. People think they need to get me out and socialize, and some days I just have no energy for it. This video is so helpful. Thank you for reminding us to be kind to ourselves.
Thank you for what you are doing. My wife had a brain aneurysm in Feb 2024 and the resulting stroke now dominates our lives. It is now August and we seem to be getting some control back into our existence. Our recovery has gone incredibly well and we have had a lot of wonderful medical people help my wife with hours and hours of physio and occupational therapy. Now we are working out how to live with the more permanent effects of the stroke. It is so good to have found Post Stroke and to go back and watch all the videos. Thanks again.
Very useful information , thank you very much My husband who had stroke 2 years back, has lack of initiative to try to do some things on his own, he expects someone to help him out .I wanted him to become independent (not fully ) like prior to stroke,if I insist he gets angry Please give me some tips to help him to do his routine things on his own Secondly , he is very comfortable doing exercise when therapist is there, but never tries on his own to perform any simple exercise .How to motivate him or make him understand that the more he does , the more he will regain or benefit from it . As a caretaker , I don't know how to handle this issue , it gives me a lot of mental stress. I will be really grateful if you help me out . Thank you
I am in the same situation you are in. My husband had a stroke in September. He also isn’t motivated to do any of his therapies at home. He does fine when he goes to see his therapists. I am also in need of tips to motivate him to do what he needs to do without him getting angry at me. I hope your husband is doing better as well as you. ❤
Hi Ganesh- I once read that those that want 100% recovery must treat their rehab as a full-time job: 8 hours of sleep, an ambitious exercise/cardio routine, relaxation/meditation, nutrition, optimistic outlook, mental exercises to expand the mind… You have probably seen this list before. I have found no other substitute available in stroke recovery literature. Good luck.
I had a stroke at the beginning of January 2024 and most days I still don't have energy to do daily chores. Some days I barely have the energy to do something simple like taking a shower. Yet other days I feel almost normal for a few hours, then the exhaustion hits. It's tiring feeling so dang exhausted pretty much every day. At least now I know there's a term for it.
The last 10 months has been the hardest in my life. I get so scared sleeping at night because of muscle cramps (Spasticity) the pain gets so much i cry just to turn on the bed then waking feeling like your whole body is casted in cement. 😢
You and this channel have been a blessing to me...i have gotten more help and information from you GOD bless you ma'am! And i pray GOD bless my fellow stroke survivors! Romans 8:28!
I am 10 months post stroke and this is seriously the hardest part of recovery right now. Before my stroke I was a very energetic go getter. Being productive was something that made me happy and feel useful and was just my way of being. Now the basics of life are as much as I can handle and I’m sitting on my couch half the day, taking naps, and in bed very early at night. It’s a big change. I’m in the process of accepting this new me and learning to work with it. Thanks for this video!
Thank you so nuch for this, I't's 7,omths since the stroke and I'm MORE fATIGUED THAN EVER BEFORE. Missed my Church service beccasue I just didn't have enough energy to get out of bed that I felt so guilty and was so angry with myself but after hearing this I stopped the anger.And I have a very hard time asking for help - my house is a mess too. Thank you for the videos. I need to esercise properly per your videos. They do help ,
Thank you for letting me know im not lazy ,Im healing. God Bless you work ,keep it up .Im 70 had a stroke but recovering,you answer a lot of questions my wife and I have been having.
I have got a stroke eigth months now, your videos they are very helpful to me. My recovery was going fine until few weeks ago I felt so tired, but now I understand. Thank you God bless you.
Hi Math- that’s interesting… My neurofatigue came 10 or 11 months after my last stroke. It seems to have occurred once I started to add weightlifting to my exercise routine. xo
I'm home from rehab, and just going to the bathroom, washing up, dressing, what to eat/not eat drink, it's enough that anything gets done AT ALL. Try to use my body to do tasks, since I don't have my homecare set up yet, still wiped out on the most simple things. Stroke is NO JOKE!!
Fantastic video. It reminds me of the need to be careful of my health....I never had a stroke before. Age 75. Just have to keep maintaining a healthy lifestyle.
Thank you for sharing more information on this. I am 9.5 years out from having an acute stroke (Ischemic) in the pons of my brain at age 50. I have foot drop and that is usually when I know (the foot will start dragging) before it hits really bad. I have had problems with neuro fatigue on and off for those years but usually big social events (where there is lots of talking in the room) and or when I have done many activities. My husband can usually recognize first when it is about to come on. Being in cement is a perfect description. Everything goes, my speech, physical abilities etc. It is frightening. As of late it seems to be coming on more. My adult children are probably the ones that do not understand why I do not work although my daughter saw neuro fatigue hit me on Christmas Eve and I think she may finally understand.
Thank you for this video. I have been wondering what’s wrong with me since I had my stroke two years and 10 months ago. When I go to the grocery store with my husband, I really don’t feel well after being in the store only 10 or 15 minutes. Most of the time I’m slumped over the grocery cart and my head is in where you put a child in the cart. My husband hates it and he said people are staring at me, so I can’t see them because I am blind now. Not due to the stroke, but from diabetic retinopathy and other eye complications. Lately, the neural fatigue has been extremely difficult. I find myself sleeping most of the day and it is very hard to even get something for breakfast or lunch myself. Thank goodness my husband is on holidays for another week, so he usually gets my lunch for me. I find it so exhausting even to get a shower and sometimes I go days without doing that. Sometimes my best days are very early in the morning and I am able to get a shower. Most days by the time the rolls around I just want to sleep. Life is very hard for me now.
I needed this. Best advice I got from a Dr who fights Gullien-Barre "go ahead and get tired, but don't get exhausted" I get revered faster when I dont get exhausted.
I'm almost 3 years post the TBI and I was wondering if it will ever get better. I have to get into bed daily at 5 PM because I start losing the ability to speak and walk. I remember my mom called me lazy when I was around 3 months into my recovery, and it made me so mad! I asked her how she would feel if in order to every time you take a step it's like your shoes are on the wrong feet and think of how much mental energy that would take. Put the shoes on the wrong feet for a day, and that's how it feels.
I hate the thought of grocery shopping anymore. Getting in and out of my car, and if I'm lucky enough to get one of those carts, even Getting in and out of one of those is a chore😢😢😢
I ONLY go to stores that have the scooters or the drive thru, and that was BEFORE my stroke as my bone on bone arthritis in both knees is severe, even using a rollator is challenging. Now, I pace myself through the day, was in hospital due to mental/physical/financial stress caused by the stroke, and the respite was needed.
@harley8680 I figured out why it does but I can't change it. I have to step in the tub - all the slanted angles to funnel water to the drain. My brain gets overwhelmed.
Sometimes I go days without showering. I don’t want to, I just don’t have the energy to get in the tub. Sometimes I would prefer to have a bath, but that is also exhausting. Just trying to get out of the tub. Plus, I am blind now, not from the stroke, but from diabetic retinopathy and other complications. So my life is extra hard, I went blind in 2000 20 sorry that was 2022, I had the try to recover from the stroke. It is all too much sometimes. at least from these videos I know what’s wrong with me, that I have post stroke, fatigue, or neural fatigue.
Wow 5?! My first 2 happened in 2014 a week apart, 3 months of Speech, PT & OT & gradually I made it back to work after about 6 months. This 1 they said was closer to my spine & I'm still in therapy for it. My benefits are running out at work. Coming out on SSDI, no one seems to know whats causing them or why. Thats the worst part. Trying to stay strong, you do the same! Thanks so much for responding!!!
Very affirming vid, thank you---especially that a) it (fatigue) exists; and, b) it's a uniquely fatiguing fatigue. I'm about 8 years from my thalamic, Left brain, right hemiplegic affected. Every day is a new day. I figure, if I wake up alive, excellent---I surely can go Bother. or Annoy Someone. THAT makes me happy! I found I had to learn to recognize I am fatigued even as I experienced Being fatigued---beyond exhausted--it's not even exhausted, it just IS Fatigue. I appreciate that makes no sense or may sound like Jabberwocky to anyone who hasn't experienced this fatigue in their marrow, but for those of us who have/do/are? It ain't no Joke. It's nice having the company of other people's reflections & comments with these vids---So helpful. Thanks.
I am post stroke 9 years now and feel like I'm still in recovery. To complicate things even more, was severely depressed after my stroke and gained 100 LBS total. I have never been overweight in my life so trying to go through recovery AND lose weight while being compassionate with myself is proving very difficult. I do have mobility issues, vertigo, nystagmus, which makes it hard to do lots of exercise. Any advise you can give would be great!
Thank you so much! I was being so hard on myself because I can’t do what I used to! I used to do a lot and not even think twice about doing multiple things during a day. I had my stroke in June of 22, I’m still recovering and all my drs say I’m probably the best I’m going to get. My neuro has stated that I have post stoke fatigue syndrome. I’m learning to mange my expectations of what I can do each day.
Of course! Life can look a lot different after a stroke ands it’s hard because you want to judge yourself against your pre stroke self. But that’s just not helpful. I’m glad you’re finding way to be kind to yourself❤️❤️
Same for me… My stroke was in June 22 too. I keep being told not to be so hard on myself but it’s SO hard accepting that this is as good as my life is ever gonna get! Everything feels like a constant struggle 😢
It’s been since Feb 2022 I had my stroke. I’ve really got this. I’m exhausted after doing my duties I use to do before or after my 8 to 10 hour day. I was a hairdresser and stood all day. I now can do the laundry and dishes. I cook the meals but I have to get showered around 5 pm and I’m dead the rest of the day. If I go to to grocery store I have to go in the morning then beat the rest of the day. I have numbest the whole right side. I feel so tired in my brain. It’s more brain fog for me. Thanks for helping me understand this.
It’s so frustrating when I’m working on something and I’m interrupted so then I have to focus on something else, which is usually semi important, but still I want to be able to complete a task I’m working on.
Hello Dr Elyse I watch your videos with great interest. They are a valuable source of information. Thanks for the same. I had a brain stroke three years back. My right side is paralysed.Your video is proving very useful in the recovery process. My worry is fingers which close easily but does not open. Would like your view on this. Thanks Rajan
Love studio Ghibli too. 3 weeks after coming from 3 months rehab. I am better than i was by far, but hate that i will never be anything like i was, and that hurts because I was so busy in the past. @PostStrokeOrg
Thank you so much for this video. Exactly what I'm going thru right now, swimming thru concrete. OMG! I thought something weird happened to me. So my question is. Does it go away? If so, when?
I'm 41 and I find the combination of fatigue from stroke and fatigue caused by persistent AF makes it impossible for me function normally some days. It has now been 3 months and I am thankful to be walking and talking but quality of life is failing me.
i had stroke iskemik 2 monts ago, thx God my stroke do not affect my ability of moving my motorik, But i have still feel tired at noon 3-4 p.m, i have medication Fluoxetine, that its caused my tiredness/fatigue? i feel confused about this condition
I had a AVM and in hospital for 3 months and can’t see half my vision. This happened 10 years ago and still feel lazy. Can I still have this? I never want to leave the house is that part of it?
Is it the same as chronic fatigue syndrome? And my boss expects me to still do miracles at work. Even though, I'm not that guy anymore. What about oxygen supplements? Or therapy.
Halo Elyse i just wanted to say science has made very little progress on nurostudies specially parylysis due to stroke they just have initial treatment and you are on your own immune response of the body.i myself am a hemmoragic stroke patient and I have spoken to best neurologist and surgeons they don't have the answer in short I want to say there is no cure for parylysis if by God's grace your recovery happens well n good or else you just die in a hope waiting one day you will recover.
Hi Great- thank you for your comments. I had to discover-on my own - - because my two different neurologist wouldn’t tell me - - the extent of my damage. It seems that if they are powerless to help me then it is best not to tell me the extent of the damage. MRI
@@BrettELothrop i understand.doctors don't have answer for this but keep one thing in mind keep urself mobilised if you don't stiffness and other sickness will catch you.brain is very complicated thing once dameged it's difficult to restore.am a spiritual person n one thing i noticed even 2000 years before there were parylytics and there was no cure until today Jesus Christ just healed them with his word remember miracles happen everyday.
I had that while in rehab; even getting out of bed and eating a meal, or showering & putting on clothes wiped me out. My whole body would be heavy. When I would go home to visit, my husband would ask me why I breathe hard from the car to inside the house? He would sometimes say I am not doing enough exercise, and to do more. I finally told him that this experience has been the most difficult of my life, and if he couldn't be supportive, I WILL find someone else to spend time with, and I say this to the other people in my life who think I'm not doing enough to "GET BETTER"!!! That's more tiring than the stroke itself!!!
So very well said
My sister once asked me why I breathe so hard. I told her I was tired can't they just see it. Annoying.
I'm feeling depressed now cos I lost my apartment. It was demolished while I was in the hospital. The thought of that along is draining. Right now squatting in a tiny space with a friend and it's so tiring. Huh
I feel you , honestly sometimes I just hope I don't wake up, I'm not scared to die, people don't understand at all, I also hate when my wife is like your doing so great when It's taking everything I got just to take a couple steps
My son and dad would call me lazy. My depression and lack of energy caused my son to leave to live with his mom, and it literally left me feeling even more broken
❤🩹
I get frustrated when people say," I get tired too". If they really knew. smh
I have a 3 month year old and my entire life is wild now! I’m almost 2 months post stroke, I can walk, I just can’t do the basic things, I try everyday but for whatever reason my hand is not responding well, I will not give up tho! I don’t have a choice!NEVER GIVE UP!
Oddly, I've found myself really tired, and I struggle to do more, but my children are telling me to chill and take it easy. But I've been hard on myself because I can't do what I feel I SHOULD be able to do. In other words, I'm harder on myself than others are on me.
Thank you for letting all of us know that what we're feeling is normal and OK.
I feel like my legs are full of cement and I can barely move them every day. I’m two months out from my stroke and I’m doing home health rehab OT/PT. I also did two weeks of inpatient rehab. I sleep 9 to 11 hours every night and sometimes take a short cat nap during the day. I don’t feel like I can get anything done. This Nurofatigue is real people. It’s no joke!
How are you now??
You Just made a difference in my life thank you!
Thank you for this. I had my stroke January 2, 2024 and while my physical recovery has been remarkable, I’m dealing with severe fatigue. Add agoraphobia that I’ve been dealing with for a couple of years now and going out and doing something like grocery shopping or appointments is utterly exhausting. I do take two naps a day and if I miss one or take it later than usual I feel it for days afterwards. I’m glad to hear that I’m not the only one and it’s completely normal. Thankfully I live alone so if I ignore a chore or find I’m too tired to shower for a couple of days it doesn’t impact anyone else.
What got you back walking and stuff all over had is shit therapists that don't know shit
Boy is that true😅😅. I feel lazy and I'm not bouncing from job to job. Glad I live by myself so I don't care when something gets done. 😅😅😅😅
❤️
All true very. Lots of abuse guilting feelings of low morale it absolutely SUCKS
Thank you for a great video. It really hit home. 2 years post stroke ( actually had 2). Fatigue is the main problem I deal with every day. I also have chronic vertigo. Some days it's disabling. 3 things I have noticed that help me are, proper sleep, proper nutrition, and the right amount of exercise or activity. Spacing out tasks and frequent rest is the key for me. I listen to my body. When it says, rest, I rest. A short rest will give me the energy to finish the task. If I don't accomplish everything, oh well, there is always tomorrow.
This is one of your best videos 👍
Thank you for this, it's been over a year now, and I'm still exhausted all the time.
Wow!! I couldn't understand why I had a funny head feeling and I have to sleep straight away.. may only be for 20 minutes to half hour .. I don't feelnguily after hearing this. Thank you. 💝
I have found aerobic exercise v helpful for energy, alertness and physical strength, power. I’m not saying this is right for everyone, we are all individuals as indeed, our stroke is individual.
However, for me a visit to the gym really works and lasts for 2 or 3 days. Following the rule of ‘a change is as good as a rest’ during just an hour at the gym I spend a few minutes on a machine for my arm strength, change to legs, pop on the cycle for 10 mins. Then back to the arms and legs….keep changing don’t overdo one of them…. Then onto the cross trainer for 10 mins. I have to walk and bus it to and from the gym so need to factor in the energy for the journeys. The final thing I include throughout my hour is a few moments recovery here and there. Never drive myself to strain or pain. I do feel the aerobics on the cross trainer and bike help as they are getting the heart and lungs working, pumping the blood throughout the body and the brain where oxygen is needed. You know instinctively, what’s too much, your body tells you, I always stay within my limits as I find them growing.
You hit this subject right on the spot! Because my family is exactly thinking this of me! They're used to My old self that I was a working machine and demanding so much and now recovering from a Stroke I've told them let me recover and it's like I tell them to demand more of me they just don't get my "pains"they say I've had broken bones and I'm like it's totally different but I'm thankful to God 🙏🏻 for giving me the joys of having this Stroke happen to me and not any of my family members because they would be a horrible mess they'd be hating life and questioning God "why me"! But I'm the Most thankful and happiest person Alive because of this Stroke! Thank You again for this wonderful video. Have a wonderful and blessed weekend 😎
It's hard. I have been called lazy. Thank you. I got to put in grace and quit being so stubborn. It is hard to ask for help. In my mind, you see me struggling., but I disgress..I want the help and I have to ask for help
I totally understand these feelings!
I had my stroke a month ago. I have found neurofatigue is very real in my life these days. Setting boundaries with others is so important. People think they need to get me out and socialize, and some days I just have no energy for it. This video is so helpful. Thank you for reminding us to be kind to ourselves.
Thank you for what you are doing. My wife had a brain aneurysm in Feb 2024 and the resulting stroke now dominates our lives. It is now August and we seem to be getting some control back into our existence. Our recovery has gone incredibly well and we have had a lot of wonderful medical people help my wife with hours and hours of physio and occupational therapy. Now we are working out how to live with the more permanent effects of the stroke. It is so good to have found Post Stroke and to go back and watch all the videos. Thanks again.
Very useful information , thank you very much
My husband who had stroke 2 years back, has lack of initiative to try to do some things on his own, he expects someone to help him out .I wanted him to become independent (not fully ) like prior to stroke,if I insist he gets angry
Please give me some tips to help him to do his routine things on his own
Secondly , he is very comfortable doing exercise when therapist is there, but never tries on his own to perform any simple exercise .How to motivate him or make him understand that the more he does , the more he will regain or benefit from it .
As a caretaker , I don't know how to handle this issue , it gives me a lot of mental stress.
I will be really grateful if you help me out .
Thank you
Agreed! It’s so difficult to encourage our SS to improve and not push them too hard.
I am in the same situation you are in. My husband had a stroke in September. He also isn’t motivated to do any of his therapies at home. He does fine when he goes to see his therapists. I am also in need of tips to motivate him to do what he needs to do without him getting angry at me. I hope your husband is doing better as well as you. ❤
Hi Ganesh- I once read that those that want 100% recovery must treat their rehab as a full-time job: 8 hours of sleep, an ambitious exercise/cardio routine, relaxation/meditation, nutrition, optimistic outlook, mental exercises to expand the mind…
You have probably seen this list before. I have found no other substitute available in stroke recovery literature. Good luck.
I had a stroke at the beginning of January 2024 and most days I still don't have energy to do daily chores. Some days I barely have the energy to do something simple like taking a shower. Yet other days I feel almost normal for a few hours, then the exhaustion hits. It's tiring feeling so dang exhausted pretty much every day. At least now I know there's a term for it.
The last 10 months has been the hardest in my life. I get so scared sleeping at night because of muscle cramps (Spasticity) the pain gets so much i cry just to turn on the bed then waking feeling like your whole body is casted in cement. 😢
You and this channel have been a blessing to me...i have gotten more help and information from you GOD bless you ma'am! And i pray GOD bless my fellow stroke survivors! Romans 8:28!
I am 10 months post stroke and this is seriously the hardest part of recovery right now. Before my stroke I was a very energetic go getter. Being productive was something that made me happy and feel useful and was just my way of being. Now the basics of life are as much as I can handle and I’m sitting on my couch half the day, taking naps, and in bed very early at night. It’s a big change. I’m in the process of accepting this new me and learning to work with it. Thanks for this video!
Thank you so nuch for this, I't's 7,omths since the stroke and I'm MORE fATIGUED THAN EVER BEFORE. Missed my Church service beccasue I just didn't have enough energy to get out of bed that I felt so guilty and was so angry with myself but after hearing this I stopped the anger.And I have a very hard time asking for help - my house is a mess too. Thank you for the videos. I need to esercise properly per your videos. They do help ,
Thank you for letting me know im not lazy ,Im healing. God Bless you work ,keep it up .Im 70 had a stroke but recovering,you answer a lot of questions my wife and I have been having.
I have got a stroke eigth months now, your videos they are very helpful to me. My recovery was going fine until few weeks ago I felt so tired, but now I understand. Thank you God bless you.
Hi Math- that’s interesting… My neurofatigue came 10 or 11 months after my last stroke. It seems to have occurred once I started to add weightlifting to my exercise routine. xo
I'm home from rehab, and just going to the bathroom, washing up, dressing, what to eat/not eat drink, it's enough that anything gets done AT ALL. Try to use my body to do tasks, since I don't have my homecare set up yet, still wiped out on the most simple things. Stroke is NO JOKE!!
Fantastic video. It reminds me of the need to be careful of my health....I never had a stroke before. Age 75. Just have to keep maintaining a healthy lifestyle.
It's going on 2yr since my stroke and I still don't feel like myself. It's so hard for my family to understand so I forwarded this video to them 😢
Thank you for sharing more information on this. I am 9.5 years out from having an acute stroke (Ischemic) in the pons of my brain at age 50. I have foot drop and that is usually when I know (the foot will start dragging) before it hits really bad. I have had problems with neuro fatigue on and off for those years but usually big social events (where there is lots of talking in the room) and or when I have done many activities. My husband can usually recognize first when it is about to come on. Being in cement is a perfect description. Everything goes, my speech, physical abilities etc. It is frightening. As of late it seems to be coming on more. My adult children are probably the ones that do not understand why I do not work although my daughter saw neuro fatigue hit me on Christmas Eve and I think she may finally understand.
Thank you for this video. I have been wondering what’s wrong with me since I had my stroke two years and 10 months ago. When I go to the grocery store with my husband, I really don’t feel well after being in the store only 10 or 15 minutes. Most of the time I’m slumped over the grocery cart and my head is in where you put a child in the cart.
My husband hates it and he said people are staring at me, so I can’t see them because I am blind now. Not due to the stroke, but from diabetic retinopathy and other eye complications. Lately, the neural fatigue has been extremely difficult. I find myself sleeping most of the day and it is very hard to even get something for breakfast or lunch myself. Thank goodness my husband is on holidays for another week, so he usually gets my lunch for me. I find it so exhausting even to get a shower and sometimes I go days without doing that. Sometimes my best days are very early in the morning and I am able to get a shower. Most days by the time the rolls around I just want to sleep. Life is very hard for me now.
I needed this. Best advice I got from a Dr who fights Gullien-Barre "go ahead and get tired, but don't get exhausted" I get revered faster when I dont get exhausted.
It definitely comes and goes.
I'm almost 3 years post the TBI and I was wondering if it will ever get better. I have to get into bed daily at 5 PM because I start losing the ability to speak and walk. I remember my mom called me lazy when I was around 3 months into my recovery, and it made me so mad! I asked her how she would feel if in order to every time you take a step it's like your shoes are on the wrong feet and think of how much mental energy that would take. Put the shoes on the wrong feet for a day, and that's how it feels.
P
Thank you for bringing awareness to this very important topic 😊
I hate the thought of grocery shopping anymore. Getting in and out of my car, and if I'm lucky enough to get one of those carts, even Getting in and out of one of those is a chore😢😢😢
I ONLY go to stores that have the scooters or the drive thru, and that was BEFORE my stroke as my bone on bone arthritis in both knees is severe, even using a rollator is challenging. Now, I pace myself through the day, was in hospital due to mental/physical/financial stress caused by the stroke, and the respite was needed.
Having neurofatigue teaches you who your friends are… and aren’t.
Yes it most certainly does
Thank you for saying this your so right
I'm almost 13 years post and taking a shower still wipes me out.
Oh no!!!
Agreed. I am 9.5 years out and bathing is one of the most exhausting things.
@harley8680 I figured out why it does but I can't change it. I have to step in the tub - all the slanted angles to funnel water to the drain. My brain gets overwhelmed.
I get it. I get pretty stinky. Hate bathing ..... so exhausting.
Sometimes I go days without showering. I don’t want to, I just don’t have the energy to get in the tub. Sometimes I would prefer to have a bath, but that is also exhausting. Just trying to get out of the tub. Plus, I am blind now, not from the stroke, but from diabetic retinopathy and other complications. So my life is extra hard, I went blind in 2000 20 sorry that was 2022, I had the try to recover from the stroke. It is all too much sometimes. at least from these videos I know what’s wrong with me, that I have post stroke, fatigue, or neural fatigue.
Tks, i couldn't understand why i no longer had motovation or enthusiasm to do ANYTHING!
I am 6 months out from my 3rd stroke. I am tired ALL of the time. I push myself a lot. I am also having trouble sleeping.
5 strokes for me. doc only now of 3. ...... 2 no way i see a doc !!!!! a year off docs drugs yay !
Wow 5?! My first 2 happened in 2014 a week apart, 3 months of Speech, PT & OT & gradually I made it back to work after about 6 months. This 1 they said was closer to my spine & I'm still in therapy for it. My benefits are running out at work. Coming out on SSDI, no one seems to know whats causing them or why. Thats the worst part. Trying to stay strong, you do the same! Thanks so much for responding!!!
I call myself lazy. It's difficult to be kind yourself
@lizgolden97 It really is, but like with all things in life, you can get better with practice ❤️😊
Watch negative thoughts.treat yourself the same as you would treat your best friend. - your reality follows the quality of your thoughts
@@PostStrokeOrg I'm trying
You have been so helpful. I have learned so much from you.
And I thought was just meds thanks God for you
Very affirming vid, thank you---especially that a) it (fatigue) exists; and, b) it's a uniquely fatiguing fatigue. I'm about 8 years from my thalamic, Left brain, right hemiplegic affected. Every day is a new day. I figure, if I wake up alive, excellent---I surely can go Bother. or Annoy Someone. THAT makes me happy! I found I had to learn to recognize I am fatigued even as I experienced Being fatigued---beyond exhausted--it's not even exhausted, it just IS Fatigue. I appreciate that makes no sense or may sound like Jabberwocky to anyone who hasn't experienced this fatigue in their marrow, but for those of us who have/do/are? It ain't no Joke. It's nice having the company of other people's reflections & comments with these vids---So helpful. Thanks.
Very helpful thanku
I would have never understood this until I saw this video. Your videos are so helpful, specially to a caregiver like me. ♥️
Excellent video all true
There sure isn't much out there regarding strokes .
I am post stroke 9 years now and feel like I'm still in recovery. To complicate things even more, was severely depressed after my stroke and gained 100 LBS total. I have never been overweight in my life so trying to go through recovery AND lose weight while being compassionate with myself is proving very difficult. I do have mobility issues, vertigo, nystagmus, which makes it hard to do lots of exercise. Any advise you can give would be great!
Thank you so much! I was being so hard on myself because I can’t do what I used to! I used to do a lot and not even think twice about doing multiple things during a day. I had my stroke in June of 22, I’m still recovering and all my drs say I’m probably the best I’m going to get. My neuro has stated that I have post stoke fatigue syndrome. I’m learning to mange my expectations of what I can do each day.
Of course! Life can look a lot different after a stroke ands it’s hard because you want to judge yourself against your pre stroke self. But that’s just not helpful. I’m glad you’re finding way to be kind to yourself❤️❤️
Same for me… My stroke was in June 22 too. I keep being told not to be so hard on myself but it’s SO hard accepting that this is as good as my life is ever gonna get! Everything feels like a constant struggle 😢
It’s been since Feb 2022 I had my stroke. I’ve really got this. I’m exhausted after doing my duties I use to do before or after my 8 to 10 hour day. I was a hairdresser and stood all day. I now can do the laundry and dishes. I cook the meals but I have to get showered around 5 pm and I’m dead the rest of the day. If I go to to grocery store I have to go in the morning then beat the rest of the day. I have numbest the whole right side. I feel so tired in my brain. It’s more brain fog for me. Thanks for helping me understand this.
Tell me about it,! This and spasticity are on rotation with me weekly.
Thank you for sharing this! ❤
I am year two and am still dealing with this and sensory overload😢tfs❤
What a great video
I am only 3 mos post. My problem is shakey, trembling. The way i feel after the flu..
Lots of rest for you, this was me also for a long time - a good 6 months or more.
I find the nastiest part of post stroke fatigue is other's pig ignorance.. thanks for this video
Thanks!
Thank you SO much for your contribution to Post Stroke ❤️❤️
Yes this is what I needed to know, Thak you!
Thank you for helping me understand.
It’s so frustrating when I’m working on something and I’m interrupted so then I have to focus on something else, which is usually semi important, but still I want to be able to complete a task I’m working on.
I’m going to give this video to all my friends and family
Please do!! I hope this helps them better understand ❤️❤️
Hello Dr Elyse
I watch your videos with great interest. They are a valuable source of information. Thanks for the same.
I had a brain stroke three years back.
My right side is paralysed.Your video is proving very useful in the recovery process.
My worry is fingers which close easily but does not open.
Would like your view on this.
Thanks
Rajan
I’ve found that my body feels heavier after my stroke that seems to improvement as the weeks go on
Good morning, Beautiful. Interesting ink 💖
Thanks so much! It's from my favorite movie, Howl's Moving Castle 😊
@@PostStrokeOrg Ah. Sounds vaguely familiar, but I'm not sure. I'll have to check that out.
Love studio Ghibli too. 3 weeks after coming from 3 months rehab. I am better than i was by far, but hate that i will never be anything like i was, and that hurts because I was so busy in the past. @PostStrokeOrg
Thank you so much for this video. Exactly what I'm going thru right now, swimming thru concrete. OMG! I thought something weird happened to me. So my question is. Does it go away? If so, when?
I'm 41 and I find the combination of fatigue from stroke and fatigue caused by persistent AF makes it impossible for me function normally some days. It has now been 3 months and I am thankful to be walking and talking but quality of life is failing me.
Mine is trouble speaking.
for e.g. it may turn out to be something different
Feel exhausted, but can’t sleep
Can stress bring this on?
Hi- I wondered about your question as well. My fatigue came 10 or 11 months after the last stroke when I began a weightlifting routine.
How long can it last? I have days often, but I’m starting 3 rd year post stroke
i had stroke iskemik 2 monts ago, thx God my stroke do not affect my ability of moving my motorik,
But i have still feel tired at noon 3-4 p.m,
i have medication Fluoxetine, that its caused my tiredness/fatigue?
i feel confused about this condition
Facts
@agohio8366 ❤️
Is that Calcifer from Howl's moving castle on your arm?
one statistic that I read long ago is the brain uses 25%of our caloric intake each day
Great information but It's too long for somebody with neurofatigue. Thanks
I had a AVM and in hospital for 3 months and can’t see half my vision. This happened 10 years ago and still feel lazy. Can I still have this? I never want to leave the house is that part of it?
I used to think it sounded like depression but I’m just not depressed so I didn’t understand why my body was acting that way.
I just want to finish things.
Strokes are very misunderstood. Every one is different 😢
Is it the same as chronic fatigue syndrome? And my boss expects me to still do miracles at work.
Even though, I'm not that guy anymore. What about oxygen supplements? Or therapy.
I think it’s similar, my neurologist has called it post stroke fatigue syndrome
❤❤❤❤❤
Halo Elyse i just wanted to say science has made very little progress on nurostudies specially parylysis due to stroke they just have initial treatment and you are on your own immune response of the body.i myself am a hemmoragic stroke patient and I have spoken to best neurologist and surgeons they don't have the answer in short I want to say there is no cure for parylysis if by God's grace your recovery happens well n good or else you just die in a hope waiting one day you will recover.
Hi Great- thank you for your comments. I had to discover-on my own - - because my two different neurologist wouldn’t tell me - - the extent of my damage. It seems that if they are powerless to help me then it is best not to tell me the extent of the damage. MRI
@@BrettELothrop i understand.doctors don't have answer for this but keep one thing in mind keep urself mobilised if you don't stiffness and other sickness will catch you.brain is very complicated thing once dameged it's difficult to restore.am a spiritual person n one thing i noticed even 2000 years before there were parylytics and there was no cure until today Jesus Christ just healed them with his word remember miracles happen everyday.
Can you please let me know if it's possible to still have neuro fatigue after 1 and a half
I still have it and I’m almost 2 years post stroke
👍👍❤
Thank you for everything you do ❤
Thank You ❤
Thank you. I needed to hear this,
Thanks!
Thank you SO much for your contribution to Post Stroke!! ❤️