Hard to stop fear

I know many of you wise stroke survivors have cautioned me to not give into fear too much but it still rears it’s ugly head. I have not improved at all with walking and spent the better part of two weekends ago in the hospital for observation and an MRI. I have cerebral small vessel disease and there are many different opinions about whether this is causing parkinsonian syndrome. Consult with a hospital nuerologist says that I don’t have this but between the uncomfortable walking plateaue, hand tremor and no relief from exhaustion I am scared at ninemonths out of not being really able to function. I want to see light at the end of the tunnel.

Sorry you’re struggling @Mbhope it is so difficult to get rid of these fears sometimes. Trying to find a way to accept where you’re at is important but is easier said than done. Have you thought about counselling? A lot of people find it helps.
Sending you my very best wishes.

Ann xx

Thank you for your reply. Yes I do participate in counseling. It just doesn’t seem to be enough when I so desperately wish to be able to have stamina for at least 1/4 of the day, or hike, wear a different pair of shoes, not be stiff or in pain, etc, etc. I know I quite frequently am a big baby wawah on here but I think only people who experienced this can understand. If one more person asks me if I’m"feeling better" I might just scream. No I’m not and unfortunately after nine months I am left with pain and stiffness that nothing seems to alleviate. I feel comforted at least by all of you.


There’s a lot to adjust to.
The fear bit I don’t have an answer to. When my body doesn’t feel right in a new way that could be ‘in my head’ it seems reasonable to suspect a new neuro cause. That leads to anxiety which is a new physical feeling and the vicious circle

For the fatigue some find it useful to keep a diary of activity & nutrition, hydration, med changes etc then look for correlations from the last few days to get a handle on what has what impact and recovery profile etc

Just a suggestion

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Shwmae @Mbhope, I know it is painful everyday, I try and seek those intermittent comforts, those moments that pamper myself that only I alone can indulge in, and that is what prepares me for the next ordeal. Stay brave :grinning:

@Mbhope of course it does, you’re human. My thoughts are try to do something each day that makes you smile whether that be listening to a favourite song, talking to a friend or watching birds in the garden, meditation something or anything to bring joy into your life, each day should have something positive to look forward to.

Wishing you all the best

Mbhope- HI! I don’t know your condition, but I just want to say that I’ve plateaued several times in my recovery from total left-side paralysis to walking a mile a day. It probably took me a couple of years to get to that place-- likewise with the exhaustion. Now, at the 4 1/2 year mark, I’m not constantly exhausted, like I was at nine months, but I still tire easily and have to watch myself that I don’t overdo like I used to be able to do. Most stroke survivors will tell you that nine months is not very long in stroke recovery. So, take heart. There is light at the end of the tunnel. I’ts just not a short tunnel. :slightly_smiling_face:Jeanne


I can’t thank you all enough. I find a bit of comfort in everything you say even if we are not all suffering the exact same way.


Great pic :smiley: :smiley: :smiley: :smiley:

Hi @Mbhope

Go easy on your self, I think we have work twice as hard post stroke to see even the slightest chink of light at the end of any tunnel, the vast array of difficulties that our injury brings us deems it so for lots of us.
I’m one year plus past mine and spent all most all of that being assaulted by a cascade of symptoms and struggles that beat me so bad sometimes I often just called it out to finish the job, describing it to my friends and family as like being stuck in the middle of a storm from which I could find no route or path out of…
…even now, I’m not sure I have, it’s quiet water at the moment, but for me and the way my injury is that can change very quickly and seriously and I still yet could find myself back in it at the drop of a hat, it’s tricky to keep your set on the positives when the uncertainty is sometimes the only certainty.

One thing I’ve always used to help me through the harder parts of my life, and something that I’ve schooled my children in when they’ve faced a few of their own early adulthood demons is “externalisation”
It’s kinda like mad writing, but it works…so bear with me on this one, as it might possibly help with you coping with some of that fear that’s eating in to you.

Externalisation is just really honest writing, I use gmail, as I find keyboard smashing easier than pen pushing, but my daughter uses a scrap journal when she does it.
You write what you feel honestly, no script, no order, you just write down what it is that’s making the head hamsters spin your wheel, you can write crazy, I often do, I just write out what my mind is saying, the questions it’s posing and what my spontaneous answers are.
It can feel silly, it often does for me, but what we’re achieving is the externalisation of our own thoughts into reality, in effect trapping them in words on either paper or screen. Sometimes I’ll write for just a few minutes, sometimes I’ve written for much longer, externalises all sort of head thoughts in a stream of consciousness I never knew I needed to plop out.

Once you’ve externalised these thoughts out into the real world, you read them back, don’t edit them or answer them, you just read those captured thoughts back, and by their externalisation and capture you get to measure how well they do or don’t fit or connect with the physical reality of the world. It can often make you feel a bit foolish, it has me on many occasions, but it’s okay. That feeling of silliness is often what shows us how irrational our fears and often our thoughts are, the words we might have written don’t connect with reality, as we read them back to ourselves in the cold light of day, captured on a screen or page we see how sometimes they don’t really fit with what’s around us. Our externalised fears or thoughts don’t sit in the room we’re in, and by being caught on paper we get to see that.
Mindfulness teaches us (when practiced to a skill) that our emotions serve no purpose in the world of the real, whether I am happy or sad, the objects in the world are neither bothered nor affected by, whether I am scared or confident has no effect, place or belonging in the reality of the moment, and by externalised our almost irrational fears on to paper or screen, we can often get to see that they have no bearing on what is around us, ahead of us, challenging us and that when we get them out they are somehow lessened by this, we get to take away our fears power by externalising it into a world where it has no purpose and really our only purpose is address the problems we have in order with reality and real solutions.

If we can turn off our head hamster wheels or at the very least, slow their spinning then we empower ourselves to be more grounded and capable of facing the challenges we have ahead of us as stroke survivors.

Maybe give it a crazy try without anyone knowing, and then read it back and see how it makes you feel about the fears you externalise.

I wish you all the very best and all the love and strength in the world to face what’s ahead.
My daughter, Anna, who’s 21 once said…
“In the end, it’s just another beginning”

and such is life, it just goes on and on and on when we allow to do so.


@Pontwander I do that too, it’s a good release, many of us (humans in general) spend too much time in our heads listening to the relentless inner monologue.

Thanks for sharing.

Best wishes


Thank you for your reply. I have up until this point always framed negative thoughts this way- taking them out and really examining. Only thing is I feel like this is the only time that maybe they are not so ridiculous, even though diminishing hope is not helpful in the least. No matter what I will continue to try, go to therapy and work hard. In the meantime, as you know, it gets tough. I come here and am reminded that you all are finding ways to move forward.

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Hi @Mbhope

It’s good to hear that you have mechanisms in place and practiced to help yourself, sometimes our tenacity is all we have left to go on.
To see you write this “No matter what I will continue to try” is great…
…when my daughter was really struggling the first question I asked her was “do you want things to be different, do you want tomorrow to be a better day, even though it might not be” and she answered yes…
So in many ways, just like you here, she’d already won, because the will to “continue to try” was still there, and with that we had all the energy she needed to fight her way back to the light. She already had the answer, she just needed to find the route.

Rups said on here recently that our strokes force us to face our own mortality, head one, eyeball to eyeball trapped in a broken down dysfunctional vehicle seemingly getting worse and not better for some. We really do have to start running towards the life we have left and try not to be burdened too much by our ailments and fear as we do so. Living becomes a skill we have to work hard at when all around us so many are doing it carefree. But that tenacity to go forward “no matter what” will serve you well.

Keep working hard Mb and invest in the good things when allowed.
Like music and song.
Take care

Palace - Heaven Up There - YouTube

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First: at 9mths there hasn’t been much time for things to improve.
Crudely 6mths can be taken for the brain to physically adjust to damage - eg reduction in swelling, dealing with necrotic tissue et al.
During that time new types of issue and fatigue sources are speculated to occur.
The body is also aclimitising to meds, skeletal/muscles adjust to the fact that gait, bowels, posture etc are all different etc
That’s like many mini changes that occasionally reach a tipping point to give aftershocks - each of which is an anxiety trigger. The fear is hard to dispel when a sudden change (from gradual changes) is felt when the last really memorable change was the stroke. We pattern match and interpret ‘what could’ to be ‘what was the reality’ or worse. It’s a survival mechanism when working correctly but unwanted in this context.
Have you tried any any mindfulness techniques - tia chi type, breathing control, meditative & contemplative, music, painting or pottery or gardening or volunteering or… etc - there is a wide range of ‘purposes’ that use time in ways that precluded dwelling on the morbid spiral. I believe “neuropsychologist” is the role title for those that might help with the fear bit.
2nd - I’ve found that the medics just don’t understand timings. I had PT giving me exercise month 1 & 2 that now at mnth 26 I find useful but then was just a cause for despair. Ever prof’nl who also had a stroke that I’ve heard has said how they understand how wrong they were. You have to be you own recover director integrating the separate specialisms at the right time because they don’t really have a visceral understanding - but like no one can ever scratch your back with the right combination of nails or knuckles, pressure & duration and migration

Much appreciation for all your comments.

Honestly, my fear is,

Will I ever recover from my stroke pain condition?

Will I get back just SOME of my stamina in order to be able to participate in life more?

Can I be thankful for my ability to drive and even to walk although it’s tough to manage for long distances or when I have to carry anything ?

I’ve been working hard in therapy for the last nine months which is about to end soon but on a positive note I can continue to do some
additional exercises in the community y that I learned in aquatic therapy.

I’m scared.

But I will keep trying.

Thank you.


Nobody knows for sure :frowning:
I’ve got 70% leg back, 60% arm, 30% hand and improving all the time.
That’s sorta typical - things generally improve proximally to distal (with continual effort)
I could not get ANY straight answers from anybody who was employed as med staff.
I’ve heard lots of stories of other people improving too. I’ve heard a few stories of people not improving. I’ve heard med staff say improvement stops after 6 months which is complete ignorant bollox that they have no business repeating. Most of my upper limb improvements didn’t materialise till 12-18mths.

Fear is a natural reaction. There is stuff to be fearful of so take your meds, ask for the cause (I haven’t been given one :frowning: ) and try to follow the exercise routine you think is right for you with advice from ot, pt etc but remember they can’t feel it like you and I haven’t found most of them very good at understanding but they do know exercises and some are better than others. YouTube and peer support and intuition has been at least as useful - combined with acceptance of where I am at, patience with longer improvement time scales then I’d like, niggling things that delay (like frozen shoulder, diarrhea, spurious aches, bad back and a litany of stuff that I’ve overcome and I hear others have different stuff but similar/ equiv.
Ask for help and be prepared to have to interpret and integrate for your self.
Many of us have learned to set the fear mostly aside but ive found that it takes time and never goes away entirely but it’s liveable now

I hope this helps. There are loads of people’s stories here and on the net. Many are uplifting

“Most of my upper limb improvements didn’t materialise till 12-18mths.”

Thank you so much for sharing that!

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I can imagine of your like me you want to know what the range of outcomes others have to know trying is worth while.
I am going to post my collective UL observations and hypothesis on gaining improved use.

One thing to say now is learned non use is the key enemy. It’s hard to combat, seductive. The best time to start was yesterday the second best time is today

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Thank you , Alan–That idea is a really good one, and new to me. I’ll try it next time my mind is spinning out of control. Jeanne

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Your picture just sums it up made me smile thank you