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Cerebellar Stroke - experience/treatment/recovery
Stroke & Cerebrovascular Diseases | Last Active: 1 day ago | Replies (514)Comment receiving replies
Maybe its just me, just curious to hear what others say. I keep telling myself that this stroke thing was not a big deal, try to focus on the gains I am making. I came to the realization last night that having a stroke was a big deal, pretty major thing to go through. I try to downplay or cover up any outward signs so others don't notice, more to keep them from being uncomfortable than worrying about what people think about me. I don't talk to anyone (except you fine people!) about what I am dealing with. I don't think anyone around me, including my family, understand that I deal with this daily, tend to suck it up as they say. For instance, every day I wake up and check to see if the room is spinning before getting out of bed, I have to hold on a little tighter to railings and think a little more when I go down stairs, I went to Hobby Lobby (could be any store) yesterday and had to deal with the anxiety I get when going into busy places, I took a walk with my dogs and had to deal with the whole lightheaded feeling for the last mile of my walk, then I went to bed thankful that I made it another day. It's been pretty much the same every day for the past year, getting better, but still the same. I keep myself very busy working on projects, hobbies and other activities and forget about the whole stroke thing a lot of the time and put on a good front when I can't so others don't notice when I am feeling the effects. I am hoping and guessing someday the thoughts will become an afterthought. Anyone else relate to this?
Replies to "Maybe its just me, just curious to hear what others say. I keep telling myself that..."
Hi Hammondm99, I think that having a stroke and the changes it makes to you as an individual is a very massive thing.
For me, I was focused on how impressive my recovery was but the hard part was realising, that there is more to it than that.
A question that I get asked a lot and my wife did after her SAH, is, are you better now? I found it at the time and still do, the most frustrating question. You are different after your stroke, not necessarily in a bad way, but just because I look well it does not mean my brain is better.
People used to look at my wife when she first volunteered in a tuck shop after she came home, she was a bit slow giving the change out and the looks she got were terrible. You almost wanted to wear a badge saying don't assume I'm stupid! …. I've had a stroke please be patient!
I think that is a problem as so far as brain related injury, ilness etc, if people can't see a physical maifestation then they assume you are fine. I would like to be fine but then accepting that this is the new me and I am happy with that and however that changes in the future is a big thing.
It is very worrying, stressful and sometimes depressing, I think this is normal.
Great news that you are playing guitar and please keep that up, I have always been rubbish at playing the guitair. It would have been cool to wake up with a new ability to play like hendrix but I got worse! It is interesting reading about your triathlons etc, I know a lot of retired professional athletes, these are guys that won vets world records, some have run 200+ marathons and in thier 60's some in thier 70's have all developed AFIB, very strange. Please keep in touch.
I am not able to talk to anyone else except you guys too. No one understands...not even my husband. And frankly they either care too much or too little. I don't need to be babied, but I NEED HELP. I use my service dog for balance if in situations where I don't have someone I know to hang on to. No one understands (nor do I) how emotionally stressed I get. The other day I simply bathed, went to a dr. appt, and had therapy. I thought I was gonna faint. Hubby picked me up and I went home and slept for 2+ hours. WTH - I have never napped before this stroke and I feel the daily need for one now.
So, @hammondm99, I too find myself having huge issues in stores/venues that have a lot of fluorescent lighting. I think it's because if they are not covered they actually produce a strobe effect that my brain doesn't know how to process. I don't know... just a guess.
My therapist actually did an interesting test with me... told me to stand on a foam board - which of course was an epic fail... then she made me wrap up (swaddled) in a blanket and had me do the same thing - in utter amazement, I was able to stand.
Have you ever tried that?
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Hammondm99, exactly the same for me! Nearly every word! And I also find that when I am ina difficult way...family and friends may scoff and belittle my mentioning a TBI, because, you know I look so good and it couldn't possibly be that hard.........they do not have a clue what it is like to be dizzy, lightheaded and unfocused and lurchy every single day for most or all of that day no matter what I am doing. Or how tiring the effort to continually cover it up is........or how sick I get in every single store, or event all the time. Sometimes buying our groceries is such an effort that I feel like I will not make it the ten miles home to the lake. But you understand and the others here understand and our mentors get it .......that helps immeasureably. Thank you all for being here.