Fatigue, Anxiety and Acceptance

[Pinch]

It’s now about 8 months since my last stroke. My physical recovery has been good, by appearance, you cannot tell I have suffered a stroke. I can do a lot of the things I did before. I can drive, luckily I retired early so don’t have to worry about work and have no physical disabilities. What I’m left with is fatigue and anxiety. I’m learning to pace myself a bit better which is helping but I find the fatigue so frustrating. I’m having CBT sessions which seem to be helping a bit with the anxiety and will hopefully help more. On Monday 16th October it will be 50 years since my Mum died (I was just 9), and 52 years since my Grandad, her Dad died. I have never been someone who marks anniversaries of loved ones passing (but I do have that one in my mind each year) but this year I’m struggling to get it out of my mind. I’ll be so relieved when the day passes, hopefully without any events!

The last thing I’ll write for now is about acceptance - accepting the ‘new me’. I struggle with this as I’m sure lots of us do. Here I have a bit of imposter syndrome, as I said I have no physical disabilities - but accepting the new fatigued and anxious me is difficult - and probably makes me more anxious! I know it isn’t just difficult for me but also for family and friends. I feel angry sometimes, and guilty sometimes - after all I’m still here, but have changed a bit inside and don’t have the energy to do everything I used to do or want to do. It isn’t as much of a ‘new me’ as many people have to try and accept, but it’s still difficult for me (I even feel guilty writing it).

I’m not looking for answers on here, it’s just helps to have somewhere to write it down in a place where others will understand.

Nigel

[Bobbi]

@Pinch

You might not be looking for an answer but by its nature your post is offering one. Actually I think there are several ‘answers’ here.

You are not alone in having to deal with the difficulties a stroke throws out. In sharing your experience you are showing others dealing with the same issues that they are not on their own. There is a direction to take.

This is very valuable, useful, so I thank you for taking the time

@Pinch

to write it down in a place where others will understand.

Keep on keepin’ on

[DeAnn]

You are speaking to me, whether you meant to or not. I have some of those same struggles. I’m here, the ideas and goals are much the same but the time it takes to bring things from my head to fruition either frustrates me in the doing, or I don’t even try. Not trying is depressing, trying but getting frustrated causes me anxiety. Aargh! It has helped to try to remember to forgive myself for my slowness, breathe, then try again. It also helps with the anxiety for me to think about what might make me anxious in any given situation and try to plan ahead what my reactions will be when certain things are bound to happen. I can’t know all of the situations that may come up, but some are fairly easy to forsee.

Fatigue and heavy brain (feels like a bowling ball to me, but foggy brain, or cotton wool head are other terms for it, I suppose)…I don’t know how to get around that one, other than to sleep for awhile. I did listen to an interesting podcast recently regarding ‘disassociation’ from neurological injuries or disorders. Until that, I would never have thought of calling it that, but most of the discussion certainly fit.

I evidently have not accepted this is me, yet, but I can say I am getting used to working around most of my issues. I wish only the best for you. I hope for us all that any issue will magically disappear, but until that happens, I am so glad you are sharing with us.

[KGB]

@Pinch

I even feel guilty writing it

Mate,

You know that’s not the thing despite what we tell ourselves - as we talked about this ‘imposter syndrome’ is hard to get over…

Really good chat and let’s do it again. Hope the pub was good again.

K

Here is a picture of a cruise ship (well a little one) to cheer you up (about 78 deg 50 mins North )

[KGB]

@DeAnn

I hope for us all that any issue will magically disappear, but until that happens, I am so glad you are sharing with us.

Well said @DeAnn

That’s what I hope for everyone here and I hope also to have Simon back with us soon. @BakersBunny you know how much we all care.

Just for you my American sweetheart here is a picture of a zodiac at around 78 deg 35 mins North xxxx

K

[DeAnn]

Water always help ease my anxieties. I need to go kayaking. very soon! maybe my daughter will take us this week? I hope so. Otherwise, I will lay in the bathtub and pretend I am floating in a lake somewhere.

[Sass]

Morning,

Im 3 months in and am experiencing similar feelings. I look “normal” and can appear normal for about an hour in conversation and then my brain starts to glitch, struggling for words, and then an overwhelming fatigue. I can’t listen to music in the background and chat, its like I now have a one track brain. I have always been resilient, have been single parenting my daughter for the last 10 years and now when she kicks off in a teenage strop I can feel the anger and my capacity for “holding it” is reduced, and again after a while this terrible fatigue washes over me. Ive been doing jigsaws, which Im loving and has really helped my brain to hand dexterity, I upgraded to a 1000 piece jigsaw this week and am completely overwhelmed with the scale. Then I come on the forum and chat with others who have so many more challenges than me and I get imposter syndrome.

I am in and out of acceptance, and I think that this opportunity to relate to each other on this forum is very precious. I feel very sad that Simon has been excluded from this privilege and I hope that the matter is handled competently and efficiently and fairly, whilst minimising the anxiety and distress.

I lost my mum in October 2015, and each year the muscle memory of the trauma surrounding her last few weeks surprises me by interrupting my sleep and then it dawns on me, I check in with myself and acknowledge the memory.

I was trying to think of something cheerful to finish off this post, Im grateful that here in Norfolk the sun has come out again, its well chilly but I do love a cardi and socks

Sarah

[Apple]

@Sass. I too am in Norfolk and yes we have fabulous blue sky and sun but it looks very cold. I am nowhere near acceptance. It will be one year since my stroke on 26th of this month. I can hobble around with my stick or at least I could do. I now have developed an unstable knee which creaks and really hurts when I walk. It feels that just as you think you are getting somewhere another problem appears to knock you back. I frequently feel to even get to this stage is just too much effort.
So that’s my moan from glorious Norfolk! Sorry everyone. Hope you all have a good day! Janet

[DeAnn]

Sarah, Janet, Pinch and @Eboni,

I am just over two years in. I soooo relate to what you are saying. I cannot promise anything, but I will say I have found some ways around most of these issues when they are most problematic. Also I can say, for me, it finally seems to be settling down to something more manageable. I have pre-teens around most of the time…pubescent and pre-pubescent. One is my grandson, the rest his friends. I empathize, or maybe I should say sympathize this time. So glad I am not the parents! My patience is not what it used to be. On the other hand, their energy has helped me keep going on so many occasions, and I am more likely to do things for them than for myself, which encourages me to do more and more. I will give you all the best advice I have received, although it is advice I hated to hear…REST when you need to. I want to push, push, push to get back to a more recognizable me, but giving in to the tired has actually seemed to be the right answer. Finally got that through my thick skull. We all have been brought up in a world that pushes the limits, and have been used to rushing around, In hope of being successful…“Never Give Up”, Constant practice, Work hard. 'No pain, No gain. What is it you want to be successful at? Sometimes these are the right answers, but in my experience, most especially with stroke, they often don’t accomplish anything and cause harm. Certainly do not give up on yourself, but give in to the fatigue. Constant practice is too much, Consistent practice is appropriate. I have worked hard at everything my entire life, can’t say any of it ever got me anywhere I wanted to be. And for heaven’s sake, if it is paInful, stop for now, do a little more later (within reason; relearning to stand is painful but necessary if one is able, but remember that doesn’t happen in one day…I am also sure there are some other circumstances as well, but in general don’t cause yourself hurt, pain or damage).

A second piece of unsolicited advice is to be mindful of your emotional health…whatever it takes to keep you feeling worthy, loved, needed, accepted…whatever you need- get it how you can, wherever you can because that makes all the difference. For me that has meant anti-depressant/anti-anxiety medication, spending time with friends when I can get rides or they are willing to visit me (distance from friends and inability to drive now are issues for me), and most of all for me, this group on MyStrokeGuide forum, of caring, understanding individuals. All the PT/OT and information in the world won’t help you if your thoughts call you worthless and a burden. If they do, they are lying to you.

[KGB]

@DeAnn

Go back to sleep!!! fatigue management

@DeAnn

REST when you need to.

K

[DeAnn]

HA HA! I love you! My brain and body won’t let me sleep at the moment, but soon. Thanks to my disability, I can sleep whenever those two allow. No other commitments.

Aren’t you glad your American girlfriend is noncommital? Leaves room for plenty of GF’s around the globe.

[KGB]

I want some commitment - I thought we agreed stewardesses for me and handsome strangers at parties for you are the exceptions?!?!

And of course I love you too so here is a picture of my parka that I may have to wear soon as I refuse to put the heating on until November but apparently it’s good to -30 degrees c so I think i’ll be ok - the bears don’t care they love the cold!!

[DeAnn]

Still using air conditioning here. Polars would love it.

Stepped outside for a few minutes. Beautiful stars this time of morning. Saw Chiron and the dog star, plus Scorpio and Saggitarius, with Libra quickly fading in the distance. When the sun comes up, I will probably be done for. I think my sleep is off because the kids are on fall break. Too much noise and activity, making me crave quiet only found overnight.

[Matthew1798]

You remind me a lot of my mother had a stroke 2 years (she recently died from sepsis).

She recovered so well physically, except a little weakness in her affected hand. But, mentally, she never recovered at all. Her cognitive mind was ok at times, but her emotional mind was a wreck. She paced all night long, had OCD over temperature, highly dependent on my father for everything, withdrawn at times, stoic, combative, etc. Her mind just worse and worse after her stroke. We had to accept the new her. We tried medications, but nothing worked. Not sure what happened. The stroke just affected her emotions in ways that couldn’t be helped.

You are still much better off than my mother was. You can get through a lot of this; you just have to stay strong and find things that help you. Try qigong exercises, meditation, deep breathing, etc. Don’t strain yourself, but do things that might help in small doses.

There is way more to a stroke than physical disabilities and speech issues. The emotional part gets completely ignored.

Take good care and keep us updated.

[pando]

@Matthew1798

mentally, she never recovered at all

whenever i get in the least bit negative it really upsets my wife… well, no point in doing that, so I try not to. Today I was a bit down, and she got upset. If I get down, she does, we all do and then it’s big trouble… I can see how sepsis could very much depend on mental strength. Anyway, it’s not up for discussion; a good mindset can make all the difference,

I hope, with time, your memories of her will settle,
ciao, take care, Roland

[Freeman76]

I could have written this myself; in fact for a moment I thought I had. Fatigue frustration and mental confusion. You are not alone, but you know that I think.

[Freeman76]

Have you had this one? For some months after my stroke (which like yours did not leave me paralysed anywhere) I would put down the knife and fork to have a drink or something, and when I came to get back to it my hands had forgotten where the knife and fork had gone to. My head knew, but not my hands. This was very interesting and peculiar. It still happens but very rarely. In other words this is progress.

[Pinch]

@Freeman76

No, I haven’t experienced that - but someone I’ve learned is that a stroke is the gift that keeps on giving! So symptoms, sometimes unusual and often frustrating can occur at any time - and hopefully go away again as suddenly as they happen. No doubt this is the brain recovering.

My biggest problems at the moment are with my mental health.

I wish you well with your recovery, and keep posting on here, it helps to read the experiences of others.

Cheers

Nigel

[jal11]

@Pinch
Your experience is very similar to mine, physical recovery is very good it’s just the fatigue that prevents me doing the things I used too
People tell me I look well which can be frustrating I want to shout that I don’t feel it!
Then I feel guilty as many stroke victims are so much worse than me. I’m just hoping the fatigue will subside and trying to keep positive.
I mark my days as either bad, medium or good, lately I have been having more ‘medium’ ones so I’m taking that as good sign!
I am also much more emotional now which can include thoughts of loved ones no longer here, I think that’s normal when you are struggling yourself.

[Pinch]

@jal11

I know exactly what you mean about people telling me I look well. I’m pleased I look well, but I don’t feel it. I know people are just trying to be kind though. I’ve vowed never to say that to anyone again!

The imposter syndrome is a wierd one, but I imagine not uncommon.

I like the idea of marking days good, medium or bad, I do keep a simple diary but adding a summary would make it easier to track progress.

It really is just a case of keeping pushing on, and that’s really difficult sometimes.

Cheers

Nigel