My recovery after 3 years

[tonelee]

Hi all
This is my first time on here and I have anxiety so please bear with.
I suffered my stroke in may 2022, it was a bleed but I recovered the acute stage very quick and was out of hospital in just a couple days and back at work within a few weeks. Initially with the stroke I temporarily lost left leg and arm movement but it came back very quick, almost overnight.
The chronic stage has however not been as good, with every day life being impacted
Below is a list of how I am now over 3 years on, please be kind with anwerrs as I get quite emotional and stressed nowadays quicklly. I’ve been wanting to post here for ages but not had the courage.
The list below is in order of the biggest impact to lowest, any feedback or helpful thoughts would be welcome, thank you.
Chronic fatigue since stroke, comes on strong and intense for no reason and is long lasting. Ocasionally lifts a bit but comes back next day or two.
Left side pain and stiffness, some days are worse than others. The pain is mainly on hand, leg and foot, its cpsp because its a burning pain, came a few months after stroke.
Audio sensory overload, gets worse when tired on left ear. Sometimes people voices sound strange if I am really tired.
Anxiety, some days high anxiety feelings.
Left foot numbness, foot doesn’t feel flat on floor.
Dry or sore eyes when start to feel fatigued, also blurry close up rreading when fatigued.
Balance issues when teally tired.
Taste issues when tired.
Depression some days.
Sadness some days.
I just wanted to see what everyones thoughts are, the fatigue impacts how all the other post stroke symptoms are, its not going away 3 years on. I felt it after a couple of days post stroke, never felt that heavy crushing fatigue before.

Right now I am facing mental issues, some days I feel hopeless, some days not so bad and almost ok.
The post stroke symptoms are always there, just depends on how strong that day. I know recovery isn’t linear but I seemed to have stalled, some days it feels like I"m going backwards, some days it feels better.

I try and get on with things and manage to do most of the things i used to albeit not as frequent or smaller scale, but its not getting easier at all, some days I dont do much and mope about feeling down but I do try my best mostly. I know some stroke survivors suffer a lot more and their condition has severly impacted there lifes, I really feel for them and hope they get better eventually.
Thank you in advance for any help.

[Janetb]

Welcome, sorry you’ve had cause to join us. Most of what you have described is common to all stroke survivors especially the fatigue. I think it is natural to feel depression. If it is debilitating then please get help from your gp.
Is the anxiety fear of another stoke? if so then is that fear affecting you more than another stroke would? Don’t waste your life worrying instead of enjoying your life.

[Bobbi]

@Janetb

worrying instead of enjoying your life.

I think @Janetb has put it very well.

You are not alone @tonelee we all go through what you describe. There are bad patches and good. As time goes by you begin to recognise the pattern.

If you can make the most of when it is good, try to get involved with life as well as you can.

There are a million of us here in the UK working through what stroke has done.

Congratulations on giving this online community a look. We each have different experiences but we all have had big changes in our lives.

Share your observations and you will through others discover that there are ways to build something out of what you now have.

There is ability, knowledge, good will and encouragement in good measure here as well as much more.

I think you have taken a step in the right direction.

[EmeraldEyes]

Hi @tonelee and welcome to the forum. I’m going to second everything that @Janetb has said. Why waste your life suffering anxiety when you can go see your doctor and get some help with that. Also discuss the fatigue, as some of that could just be a nutrient deficiency, to find out which one you may be deficient in just requires a blood test. As it turned out, I was low in folic acid, and after a couple of days being on a prescribed dose, my fatigue wasn’t half as bad as before. So it’s well worth getting these things checked out and the sooner the better for you!

And while you’re there you can discuss your hearing issue; have the doc refer you to ENT. I had similar issues with my hearing in the first year post stroke. By late afternoon it start to fade, by evening I was totally deaf, no sound at all . . . all part’n’parcel of the stroke and brain fatigue. I was referred to ENT and after all the checks they did, I wound up with hearings! Best things since sliced bread in my book and I hear perfectly with them now! And when it does fade with fatigue, usually only late evening now, I just turn them up a notch or two, that simple!

Life after stroke is way hard enough for us, so why not get the little things, which can be fixed, sorted now to make your life that much easier.

The fatigue can be managed, easy for me to say because I’m retired. But you work? Is it a stressful job? Are you taking enough breaks, even just 5 or 10 minutes here and there, of quiet time, sit with your eyes shut helps. On days you work, don’t plan to any other major excursions, like say to the supermarket afterwards. On the days that you work don’t go anywhere else that’s busy or loud or too bright. Could you reduce the hours you do?

Your brain, after a stroke, is running at reduced capacity now, so you are going to tire, as in, mentally fatigued, much quicker than before your stroke . . . much like babies too with their developing brain

We are a very friendly and helpful bunch on this forum. One thing we all have to look out for is misunderstanding with the written word on here. Because we’ve all had strokes! I still have aphasia for instance, and there are so many variants to that alone. Words don’t always come out right for me, I have read and re-read and then read again sometimes before I get the correct meaning, it could be very easy for me to take offence or get upset by something written.

But I’m very aware of my condition and know when I’ve read something wrong. We misspell, we drop words, we transpose words or letters even. So my general rule of thumb on this forum is never be upset or offended by anything I read, because I’m not the only one on here with this condition post stroke. The same goes for what I write. Yes, I write a lot, but it can take me a couple of hours because I have to check and triple check what I’ve written. And there are many who suffer with anxiety and depression on here too, so we are all very mindful of that You are not alone on here

Lorraine

[ManjiB]

Welcome to this community @tonelee and thank you for sharing your story. Now that you have plucked up the courage to post on here, hopefully you will be able to continue and perhaps do some more posts. You may have many things to share from the three years as a stroke survivor.

You can of course just search for information on any of the topics that are of interest to you on this forum. Almost certainly any questions you may have may have already been discussed by other members of this forum and if they haven’t I am sure by you asking a specific question, you will likely get a response.

Just as an example, fatigue has been discussed quite extensively in recent weeks and you may find the posts interesting. Or balance issues - I have done a search as an example and see there are quite a few posts on here.

Wishing you success on your journey as you recover from your stroke.

Namaste|

[Mich-mm]

I’m seriously impressed you are a year ahead of me. I had an aneurysm, a blood vessel that baloons and subsequentlybursts. I’m left with an inability to walk, talk and eat. I don’t sleep anymore so I’m in a constant state of fatigue. Each day is a fight to stay alert and make sound. But I find many on this forum ‘kick’ me into action, which I frankly need otherwise time slips by and I achieve nothing!

[EmeraldEyes]

You remember to come on here every day, that’s an achievement in itself, particularly in your situation. It would be so easy to forget, that just proves there is improvement

Lorraine

[harimanjaro]

Welcome to the community @tonelee. Like you, it took me while to gain the courage to post here, but I’m so glad I did. You’ll find a group of people who understand what you are going through because they are on similar journeys. I’ve found that to be an enormous help, and I’m sure you will too.

[Susan_Jane]

Hi @tonelee sorry to hear of your stroke and the struggles you facing at the moment but welcome to our community of stroke survivors and their carers and families. Between us we have a wealth of experience and information and I hope you will find this a useful place to be.

Sadly all of the things you have described are common to most stroke survivors and you are still in the early stages of your recovery.

I can see that you have received lots of advice and information, so I won’t repeat it again. I will just say try not to push yourself too hard and be kind to yourself .

We are a friendly bunch, so feel free to jump on and ask away at a anytime, if you need advice or information or you just need a shoulder to cry on.

I suffered a hemorrhagic stroke 8 years ago and this community is still my go to place when things get tough. So remember you are not alone.

I look forward to hearing from you as your road to recovery continues.

Sending best wishes and regards

Sue

[Mrs5K]

@tonelee Hi & welcome to the community. Sorry to hear you are having these issues 3 years post stroke.

I am in a similar position to you. I am 3 1/2 years on but still suffer fatigue, sensory overload, balance issues amongst other things.

I would suggest a visit to the GP as a good starting point. There may be some things they can do to help. Fatigue, for exampke, may becaused by many things & a few tests can rule these in / out. I also work which doesn’t help withmy fatigue & maybe you need to give some thought to whether there is anything you can do to make your working life a but easier. Do you have any adjustments in place? I have my own office allocated to help with the auditory overload, I work from home too, i have reduced my hours, i have software that reads to me & writes if I dictate, i take regular breaks throughout the day I have every weds as a rest day etc etc.

Have you tried loop earplugs for your sensory overload? I find they help.

The amount you are doing maybe the root cause of a lot of your issues & some re-evaluation naybe needed. Planning, pacing, prioritising are all important. Do you have anyone to help? Take any / all help you’re offered. Do things in a different way…shopping delivered for example.

None of this is easy & it takes some real.hard thinking & being honest with yourself.

Don’t know if any of that has helped but I hope so.

Best wishes

Ann

[tonelee]

Hi Ann
Thanks for your advice. My GP has prescribed me medication for my very high chronic anxiety. She has said anxiety alone is draining, especially chronic, I get a lot of sensations and emotions. Occasionally my fatigue lifts and I feel so much better all day long, this fatigue isnt like normal tiredness, its teally different and i feel my left side and senses slowing down, i start to struggle with words and hearing overload too. Anyway, I came on here just to finally open up on what happened. Looks like sadly many other stroke survivors are going through similar things, I hope they all slowly get better.

[Mrs5K]

Your GP is right anxiety is exhausting. If you can get on top of that other things may get easier too.

I’m glad you have been able to open up. Sometimes that’s all we need even if nothing has been solved.

I hope your symptoms start to improve soon.

[Rups]

Five years on, I still seek out those moments when I can feel comfortable. I spend a lot of time in discomfort, fatigue, visual-spatial challenges and high anxiety. Distraction is a goal I set everyday, whether it is ironing, watching films, playing video games, music, gardening and social contact when I crave it. I think for everyone, life is a series of distractions, for stroke survivors even more so. I feel states of lowness, not really depression but emptiness and I look forward to when it lifts, sometimes I do everything in my power to make it lift. Often I rely on sensory things … touch, taste, smell &c. I don’t have a “feeing good” natural disposition because I am constantly challenged by my symptoms but I seek out those moments inbetween when I feel satisfactory and I can’t ask for more than that. Anxiety can be managed through Mindfullness and other techniques to keep it sufferable.

[tonelee]

Thank u all for the advice, its much appreciated. I just didn’t realise how long and inconsistent recovery was. I am trying to get on top of my chronic anxious feelings, I know that before I had high anxiety I felt better. I also know that stroke recovery isn"t linear and different for everyone.
I hope you all keep up the hatd work and get better, thanks.

[Georgie2021]

I too am 3 years (slightly more) and experience a lot of what you do. Some things less so, some more. I am not feeling so good at the moment due to situations made worse by my stroke. However I do, most of the time,try to put on a brave face. Although a lot of time it’s false bravado I think it is the best approach. I have found talking to other Stroke survivors is the best way as very few others really understand, however much they love you. The Stroke association has, almost every week, session called Chat and Listen which I generally find helpful. I think the thing is keep on keeping on! Take all the medical, physio help you can.

[Manny38]

Thank you Tonelee for sharing your experiences. I can’t offer much advice but you describe what I’ve been struggling with for nearly a year. A severe burning sensation in my legs. Mine’s only at night which stops me sleeping. No doctors or specialists seem to be able to diagnose the cause. Stroke was Sept. 2023. You mention cpsp. Does that stand for “Central post stroke pain”? If it does are there doctors specialising in that problem. I ask because I haven’t found anyone.
For the lethargy and depression I’ve found learning Italian online helpful. It might not be your “thing” but if you could find something that occupies your mind, it distracts you from negative thoughts, which can be physically debilitating as well as causing depression. Tablets never helped my depression as well as causing side effects. Hope you can find something interesting to do.
Best wishes,
Margaret

[tonelee]

Hi, yes central post stroke pain. Mine is intermmitant, its there all the time but varies on how strong, don’t understand why most post stroke symptoms are off and on and why they aleays vary on how strong. CPSP is still not fully understood, the only meds that may help are trycilic antidepressants at low dosage.
But it’s mind blowing how much post stroke conditions vary ftom day to day. Like why does fatigue come and go and not always the same, it’s challenging not knowing how you are going to feel from day to day.

[Anna_Moderator]

Hi @tonelee

Welcome to the community, I’m sorry to hear about your stroke and the difficulties you’ve been facing.

I can see that you’ve already had some great responses which I hope has helped. Along with this community you may find it helpful to join our Online Activities, we offer a wide range of virtual sessions you can choose from. You can learn about the effects of stroke, share experiences, take part in exercise groups, social quizzes and lots more. These sessions help people to feel more connected to others.

I also just wanted to say, well done for posting about your story. I understand who difficult it can be to open up to new people.

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

[tonelee]

Thank you, much appreciated.

[tonelee]

Thanks for the info and advice everyone.
Today was another one of pain and heavy fatigue amongst other things. I just don’t understand why there is so much variation from one day to another, it makes planning to do amything a nightmare. I know recovery isn’t linear, but don’t get why some days we are much worse than others for no apparent reason. Don’t think anyone fully understands, it’s a shame because it would really make such a diffetence if we had more info.