Lasting Effects

I had two strokes in Sept 21. A blood clot and a bleed.
Had the most awful experience in hospital, uncaring staff, procedures and stroke pathway not followed etc.
What i most struggle is with fatigue, akin to exhaustion, not feeling like me, and a void feeling ie thought and problem solving process not being right.
A greater sense of my mortality.
Is that ringing any similar feelings?

@JTC welcome to this friendly supportive forum. Sorry to hear you had 2 strokes last Sept. I don’t think I’ve spoken to a stroke survivor yet who doesn’t experience the fatigue. I was having an ok day today then early evening fatigue hit from nowhere. You need to find a balance between activity & rest & try not to overdo it. Easier said than done though. All the other things you mention are normal too & will hopefully subside in time. This forum is great to reach out if you need or want to. Hope your recovery progresses well. Best wishes Ann :blush::blush:

Thanks Ann
I returned to work in November on a phased return. So by 2pm i’m exhausted.
Mood swings etc etc
Joint ache, especially back and neck and shoulder on my left which is the side most affected by the strokes.

@JTC you’ve done well returning to work that quick. I had my stroke beginning Dec 21 and am still off work. The fatigue I get is horrid and can last for up to 6 days at a time. Once I get it to a more manageable level I hope to return to work. I get mood swings too……think that’s a common consequence of fatigue. There are so many different affects of stroke it’s hard to keep up with them all :grin:

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Fatigue is something I can relate to. Yesterday, I went out shopping. Today I am tired and just doing quiet activities at home. That is the cycle of things for me - one day active followed by one day quiet.
Problem solving process (I use the word coordination) is challenging. I am learning to carefully plan an activity before I start.

Welcome @JTC sorry to hear you’ve had 2 strokes and had poor quality care in hospital.

Back to work after 2 months, that’s quite an achievement.

Fatigue is quite common, I think everyone here’s suffered from it. I’m hopeful it will get better with time, though that’s not proving to be the case for me just yet, but fingers crossed it will.

We’re a friendly bunch here and will offer support and share our experiences, which you may find helpful.

well done for returning to work that quickly. I also had a stoke in September '21 and dont think I’ll ever want to return to full time work. Some very short hours might be just the job but I rather think that Im not going to find anything much in the rural place where I live. I thought (knowing next to nothing about Stroke) that I would recover very quickly but I also feared that any disabilities left after 3 months would be permanent. I have been pleasantly surprised to have made recent steps forward. YES, they have come in a two steps forward and one step back manner. I noticed recently that my ability to turn my head (for example when crossing the road) and to walk along without feeling like Nearly Headless Nick sort of dsasociated from my body had suddenly improved. Feeling really happy about this I did quite a bit of gardening and had to spend the next day in bed feeling dizzy and sick! It seems to happen like that but you have done well and you will keep achieving. Welcome

Hi, I’m Andy had a stroke 9 weeks ago and still off work, getting physio as my left leg and arm are week and using a stick to help with balance. I also feel exhausted all the time.

Hi Andy @Durhamlad1964 welcome to the forum.

9 weeks in post stroke terms is early days, there’s still time for lots of improvements to be made.

Wishing you well with the physio, it’s hard work but the results will hopefully be worth the effort. Listen to your body and rest when you need to to try to stave off fatigue, it’s a balancing act trying to figure out how progress and not to overdo things.

Best wishes, take care

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thank you Mahoney for your kind word, yes early days just a shock as I had no warning signs.

Regards

Andrew

Thank you.
Sometimes i think i went back too soon but in a way im glad that i did.
Getting my blood pressure under control, was 220 / 140 when admitted, has been difficult, my left leg feels like it doesnt quite belong to the rest of me, i think i dont sound the same and occasionally swallowing is an issue. Lost 50% of my hearing and definitely noticed a change in my taste buds.
But as i say ive been quite lucky.
Its all very surreal

@Durhamlad1964 hi Andy, welcome to the group. Sorry to hear about your stroke. It is definitely early days for you yet. I am still off work nearly 6 months on & still getting physio too. Off there in half hour in fact. Try & find that balance between activity & rest to try & stave off the fatigue. Not easy though. Celebrate all your successes however small & remember where you started in this journey so you can look back on your bad days & remind yourself you’re doing well. Good luck x

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Hi JTC --The fatigue you speak of is one of the symptoms of stroke that I think is almost universal in stroke survivors. The brain is working on healing itself and rewiring, so I think that’s part of why we feel so tired doing things. However, there’s not real breakthroughs on what really causes it and how to “fix” it. I think one must rest if needed and be patient with oneself. Healing takes lots of time. That “greater sense of mortality” that you speak of is one that I felt strongly, too, after my stroke. It’s a mixed blessing. On the negative side I can’t just “enjoy” life and go blithely along as I once did. But on the positive side, truly realizing my mortality has made every day, my husband, every person, every flower and cloud more precious, more miraculous. I was quite depressed and anxiety-ridden after my stroke. I saw a counselor for a few weeks and that helped. CBD oil drops helped with the anx iety. I just have to “put it all in God’s hands” and try to make my own little universe as joyful as I can. I try to always focus on the positive and laugh as much as possible. We always end the evening watching something funny on TV–so we go to bed with a few good belly laughs under our belts. Laughter really is the best medicine. :slightly_smiling_face: :heart:Jeanne

Thank you Jeanne.
I keep trying to get to being appreciative for all things in my world however, the mood swings then come into play and the best of intentions go flying out of the window.
I was lucky in that i had no paralysis, continence issues and any noticeable visual signs of a stroke. However, i am in constant pain, left sided weakness, issues with swallowing, speech problems, loss of hearing, taste buds changed and thought process being disrupted / replaced with a void.
Which are all things that i didnt realise a stroke could affect and / or leave you with. It just keeps on giving and not in a good way, typical.
Anyway then theres fatigue, which is on another level. Totally wiped out after work or doing any activity.
Work have been great as have my wife, daughter and friends. I don’t know how single people cope with the affects of a stroke, i take my hat off to them.
I need a holiday that’s for sure.

One more thing to remember, JTC. You have plenty of time to heal and feel beetter. It’s only been a couple of months for you. I was a basket case the first year. So, you are really doing quite well to be doing as much as you are so soon–maybe too much? Be sure to rest as much as you can. You will feel better and many of the symptoms will resolve in the coming months and years. My friend told me she started feeling more like herself at about the 4 year point. I am at the 3 1/2 year point and I am still improving. You will too. :slightly_smiling_face: :heart:Jeanne

Jeanne your posts are so helpful. I read somewhere in the early days that the first four months are when the most improvement happens so was convinced I would recover fully in 4 months, and then terribly disappoointed when I didn’t. I now realise that I WILL continue to make improvements (even if they are of the two step forward one step back variety) and will keep plodding on, although it will definitely be very slowly this week as I have a new pair of glasses to get used to

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You have the right attitude, Fiona. It does seem like we have days where we go 2 steps backwards. But then, I look at where I am now compared to 3 years ago and I can really see the difference. Hope your new glasses settle in quickly. :slightly_smiling_face: :heart:Jeanne

Your feelings will be familiar to just about every Stroke survivor on this forum.
You will have good days and days when you are tired .
Just accept that this is the new normal for the moment and that things will improve as your brain and body rewire .
It is now almost 13 years since my stroke and I have improved a huge amount,yet still suffer occasional periods of anxiety and fatigue.
Good luck on your journey.Tony

A happy story about fatigue - my friend had a stroke over 5 years ago and has largely recovered well but occasionally she gets tired. One day she was due to go to the mall with a friend but suddenly, for no apparent reason and with no warning she felt tired and unwell so went to bed instead- only to wake to hear from the friend (who was fortunately OK) that there had been a shooting at the mall that day.

@FionaB1 wow that’s some story. Yay for stroke fatigue :blush: