I am two years post stroke. I found the early months of recovery require hard work, constant exercise and setting goals and breaking them down into manageable parts. Nowadays, recovery continues slowly, but I still get down days where I am a mixture of anger, frustration and self pity. Fortunately, these do not last, my partner makes me snap out of it and I press on. I find exercise essential and still need daily rest. My consultant said to me six months after after my stroke, ‘Although you are not yet the person that you were, remember to be the person you are now.’ Wise words and worth remembering.
Very true John - I went to my GP a few weeks ago and when I walked in he gave me a hug and I suddenly had a sobbing episode. I felt such a fool. Where do all these tears come from for no apparent reason other than someone just being nice to you! He said "Don't keeping looking back to how you once were. Look at how far you've come now compared to the day you left hospital" I try and remember that when I have rubbish days.
How kindness can bring on tears! When I first went back to my little church after stroke, they all stood up and clapped me. They'd all been rooting for me and sending good wishes. I was so choked up, I couldn't look at anyone to thank them!
hi John J. I It's some comfort to read of your anger and frustration. I know my anger comes from my many frustrations, just seeing what you can no longer do. I find myself actually banging my fist on the table! Then I go into my manic laughing as I find myself so funny (and odd) Not good when hubby is being cross with me and I'm creased up laughing!
Oh Barbara, I would have been a wreck LOL! It goes to show that there is much more goodness in the world than bad.
I am now in my fourth year following a stroke and find I still have to be careful with the loss of control of the dreaded tears. I visited an ENT specialist last week and although she gave me news that I didn't like, I was very impressed with her examination and diagnosis. I congratulated her and had to do a serious job of holding back.
I had hoped that this would have been done with by now but obviously I shall just have to continue being careful.
I'm posting this in the hope it will ring bells for others. I had a stroke over 2 years ago and am grateful that I am generally close to where I was before, much of the time. However, recently I have become very tired and my legs have become stiff and my upper body feels like I have flu symptoms. My eyes are very heavy and I can fall asleep at the drop of a hat. My left side is usually a bit weaker than my right, but just now my leg is quite wobbly. I keep thinking that the fatigue has gone for good but then this happens. Do any of you have similar issues?
Although this doesn't ring any bells with me as I'm not a stroke survivor, I do interact with people affected by stroke every day.
Stroke is not a degenerative condition, the way that people are affected by their stroke will either remain the same or improve over time. As the symptoms are new, it may be worth speaking to your GP about the fatigue, but also requesting a referral to a physiotherapist to work on strengthening your legs.
We do have lots of information on both fatigue, mobility and other physical effects of stroke here -https://mystrokeguide.com/advice-and-information/physical
I hope your GP can support you, but other users on here can relate to how you're feeling.
Thanks Vicki. I've had a poor couple of days and needed to have someone hear about it! You people are doing good stuff.
Hi Iain. I'm only 8 months post stroke and have the same symptoms you describe a lot of the time. I have a few good days then a week of rubbish days. Some days when I go to the supermarket I set off feeling fine and start to do my shopping. When I get to about half way around the store, I could literally abandon my trolley and lie down in the aisle and go to sleep there and then. My eyes go red and sore and it's an effort to keep them open. I plod on as sadly I can't go to sleep in the middle of the supermarket! I always make sure I go to the cafe though and have a drink and a bite to eat before setting off home. Usually, combined with sitting down for half an hour, this revives me enough before I go home.
I always make sure I have at least 45mins rest in bed early afternoon. Without this little bit of bed rest, I feel genuinely ill by bedtime with the fatique. I go the gym twice a week and do small sections of cardio with breaks in between of light weight training. It has helped with the stiffness and also the weakness in my leg and arm on my stroke side.
I'm now going to neuro physio which is helping with the stiffness and I am told this will also help build up the strength in my hip and back which was damaged with my stroke. I'm just grateful though that I can walk albeit not very far and can drive too. My biggest fear when I had my stroke was losing my independence and not being able to drive again. I remember crying my eyes out in hospital after a nurse told me it would be months before I could drive again. Not so, the consultant told me I could drive within 1 month once I got clearance from my GP which I did and 4 weeks to the day, I was back behind the wheel.
I still get my words mixed up and sometimes I open my mouth and nothing comes out only garbled rubbish but my husband and I have a laugh about it now. I know I've a long way to go but I'm determined I'm going to fight this all the way!
Hi Onwards and Upwards
Thanks for taking the time to reply and for sharing your experience. I have found over the past 2 years that when I have a dip, it's important to speak to others and hear their stories because often there are some similarities and I'm reminded that I'm not alone. You sound as though you are doing pretty well. My experience is that although I have these occasional low points, recovery continues - sometimes in tiny ways I only notice when I go to do something which I had lost the ability to do post stroke, and I do it without thinking, realising after a wee while that I can now do it again. Yippee! This recovery is a challenge, isn't it?
I had my stroke nearly 3 years ago, I've made a good recovery and am back at work. I have the same issues with fatigue as you do, some days just feel impossible. Also the more tired I get the worse some of my on-going symptoms are - I lose words and get them jumbled up and I have pins and needles in my right hand for long periods of time. My husband tells me all the time that I have to remember that I've had a serious brain injury, I'm never going to be the same again and I shouldn't try and be super-women! Just because the Stroke was years and not months/weeks ago doesn't mean you're still recovering - when you feel the fatigue you have to be nice to yourself! ?
Hi Lisa glad to hear all is going well for you. I had my stroke in July this year Such a shock. I am like you when I am tired I can't think right and what to say, I have been left with a balance problem but seems to be improving. The tiredness is still a problem as it seems all stroke survivor's seem to have this problem. I am not back to work yet but hope to return in the New year. It is very true what your Husband said our brains have had an injury. If you go on the internet look up A LETTER FROM MY BRAIN. Such a good read it really helped me. Anyway if you reply to this and I don't answer for a while it will be because I am not good at navigating round this site. Have a good day. Keep happy and strong.
Thank you for replying. I am very interested to know what's happened to you. How do you feel about telling me a little bit about yourself and what's happened to you?
Lisa :) x
Hi Lisa, I had my stroke in August this year. I feel like a “Weeble that wobbles and doesn’t fall down” like the old toy from the70’s or 80’s! Speaking has much improved and is almost back to normal with my words getting a bit muddled up, but that happened before the stroke so who knows if that’s stroke related or just me and I am that busy looking for things being changed in me? I have a stiff feeling in my right arm and leg, and on a good day I make it all the way round Tesco without feeling like I need to abandon the trolley as I feel it is all getting too much. My head finally feels like it belongs to me again. I have tried explaining it to friends but it’s really hard. Sometimes felt like there was a fog or cotton wool with an elastic band round ny head. I am a bit of an over thinker so getting back on track and just going out to put the bin out was a major goal I had to push myself to do it as I worried just in case something, goodness knows what, would happen! I hope to go back to work in the new year, but it’s all hard work, and so tiring, who knows, but I remain hopeful and positive.
l’m trying to be kind to myself taking your advice...keep doing that for yourself Lisa ?
Hi yes it rings bells for me, I am 16 mths post stroke and since Sept I keep thinking I am going down with sinusitus or a flu bug, I get hot and cold, my nose blocks up so much that I can't sleep, I get everso tired and the fatigue still hits me. My BP is up and down like a yoyo. Its like most things that happen we get on with it, but do talk to your doctor he may be able to help. Wendy
Hi Lisa I had a stroke in July this year, very scareyI am making a good recovery. I lost the feeling down my left side, slight memory loss, and balance not too good I am still walking with a stick. The tiredness seems to be improving. I know I have come out of this very well compared to some people. I hope to return to work in the New year but I will now go part time and a less stressful job, I work at our local hospital. Sorry I have not got back sooner as I forget to check this site regular . I hope your making a good recovery it is a very frightening thing and you look so very young in your photo, I'm 58. But age does not count with strokes it hit any one at any time. I will make a point of checking here more regular . You take care and keep smiling. Regards Jenny
I’ve had a fabulous day full of all the things you mention and self pity was winning but I’ve given myself a kick up the butt with the help of a friend, and am working on embracing the new slightly different me. I even had a letter with the results of my last ct scan saying that they are really happy with my healing and they say there is only minimal scarring on the bleed site, so I should be happy, but it’s hard to focus on the positives sometimes. BUT I am going to focus on the can do, and aim for the will do stuff, bit by bit.
Good news Lorna. Never give up or give in. I had a bleed butbthe only scan I had was at the time. We all regret the things we cannot do, but we must embrace what we can. As you know, cooking keeps me sane but I still need to pace myself. Old friends are coming for tea tomorrow and the next day we are all having lunch out. She has been disabled for some years but relishes life and lives it to the full. She even goes disabled sailing. She is my role model.