Years ago, I wrote a post about post-stroke fatigue, I’ve written about this subject quite a lot….Anyway, I remember Dean leaving this comment on some post, “7 years later and fatigue is still a bitch.”  Well, now I’m at that point.  I’m 7 years post and I’m going to say the exact same thing.  Seven years later and fatigue is still a bitch.  Dean, how is your fatigue now?

This is terrible, quite frankly.  And just like everything else having to do with a stroke, unless you’ve experienced it, you can’t possibly begin to understand this.  When I was 1, 2, or 3 years out, people around me were WAY more sensitive about it.  When you look bad and sound even worse people tend to be a lot more sensitive about things.  Everyone around me seemed to be a lot more understanding about the fact that I need to sleep A LOT and that an evening out or any social encounter whatsoever causes me to need recovery time usually for the entire next day or two.  This was pretty much already the case because of my introverted personality, add stroke recovery to that….

Now, things are very different.  Now 7 years later, I look great, sound great, I look like absolutely nothing is wrong with me and have appeared that way to other people for quite a long time, so other people are much less understanding and sensitive about this issue, and every other issue that I deal with every day of my life.

I remember a really arrogant neurologist prick telling me a year after my massive stroke(s) that the fatigue that I was experiencing was solely caused by my depression.  And this guy was considered to be a worldwide “expert” on strokes.  ANY brain injury is going to cause massive amounts of fatigue.  Anger.starting…blood.beginning.to.boil……about.to.explode…..ok, enough, moving on.

HEY SPOUSES: if your wife or husband had a stroke and sleeps until noon, then goes to bed at 9 o’clock that night……don’t you dare make a comment about it.

Categories: Brain stuff, Health, Recovery, Stroke stuff

Tags: , ,

18 replies

  1. Thanks for the warning, Amy. I will expect Michael to sleep and sleep. (he is also an introvert) He is coming home for sure on Wednesday the 2nd and we will go back to the facility twice a week for outpatient therapies. I hope, with who knows how often INR tests, he gets to get all the rest he needs. Should I plan on afternoon appointments if I have a choice? Thanks.

  2. very helpful thank you

  3. 12 years later and the fatigue is still there. I can’t even stay awake for an early evening music date. I pushed thru 12 years of work including lots of travel with tons of coffee. Now that I’m retired I’m finally catching up on sleep. My cardiovascular fitness is great, can easily walk 5 miles a day. Between fatigue and spasticity I don’t know which is worse. I look great and people comment on how well I’m doing but the invisible deficits are still there. Amy, between you and Barb you are probably the only two people who understand me.

  4. Amy, it is nice to read posts from you again. Totally understand how you moved away from the blog and are now partiipating in a “normal” life again. Your blog was a comfort to me after I survived a cerebellar stroke six years ago. Many questions were answered and I didn’t feel so alone.

    Yes, I still have fatigue but because I no longer work sleeping late is acceptable. Since I can’t walk without a walker, returning to a “normal” life is a struggle. Family members and friends say “You look fine”, “At least you don’t look like you had a stroke” “At least you are alive”…..”At least…..” I find no satisfaction or comfort in the At least comments

    How about your body aching? Was this an issue with you or any of your readers?

    • When someone says something starting with “at least” to me, I wish bad things happen to that person.
      Pain was not an issue for me, luckily. But there have been many comments about it, I’m sure someone will respond to that.

    • I have learned to hate the words “at Least” and “You’ve come so far”. It may be just me, but I realize how far I’ve come in someone else’s book, but in my book it feels like a baby step. Yes, I can talk, but it isn’t clear, it is slurred, it’s not MY voice, I can’t think of the right words more than half the time and a lot of the letters don’t come out at all.. I CAN walk, but if I wamt to leave the house it’s with a cane or walker or worse yet if it’s hot outside it’s in a wheelchair. I can get dressed but its difficult, I can’t color my hair any more because my arms/hands don’t work right, I don’t wear make-up, I can’t work… etc.. but AT LEAST I’ve COME SO FAR…..LOL

      • Penny curious…you said when it’s hot out you’re sometimes in a wheelchair. I imagine that it gets miserably hot in Arizona. I think it gets hotter there in the summer than I experience here in Florida. How does the extreme heat affect you? Most people have said that warmer weather makes stuff better. This has been the case for me personally. But that extreme heat may be too much? Perhaps sunshine has a biphasic effect. What happens?

        • Hi Amy, we have been in the 90’s here in the Phoenix area most of April, today is pretty nice we’re in the mid-80’s and cloudy but it is a little humid for us. We will probably hit the 100’s next week and pretty much stay there until October. Heat whether it be from a hot shower the hot kitchen or the weather is too much for me. I am already carrying around 80 to 100 pounds of excess weight and that doesn’t help. I get very sick to my stomach. If I.m not careful it usually end up sick at one end or the other. I get very weak, my legs give out, I sweat profusely and feel like I’m going to pass out. It’s no fun.

          Last summer my Daughter and her family who I hadn’t seen in 4 year came down for 2 weeks the end of June, then we move the 2nd week of July. I did not leave my new apartment until November due to the heat. We don’t have a car, so we have to use city buses and waiting in the heat for the bus or walking to the next stop and hope it has a seat AND a shade AND that the bus isn’t late.

          Looking for someplace for my hubby and I to “retire” to after my youngest moves out. She is going back up to Oregon, too much rain for me. I love the Ocean. but too expensive,

          • Wow! Yeah that’s definitely more intense heat than here! I can definitely see how that extreme weather would make it really uncomfortable. I was just thrilled to get away from the damp, dreary weather in Pittsburgh. I can totally see how the other extreme wouldn’t be great.

  5. I was afraid it was only me. There at times my voice barely comes out of my mouth as I no energy to put behind it. I fall asleep sitting on the couch in the afternoon yet I can’t fall asleep at night in my bed. There are times it’s like walking in wet cement as it’s drying, I’m so tired.

    I know I have depression, I’m trying to make a go of it without my meds (mainly cuz their so expensive and disability payment doesn’t pay crap) and that will make me “tired” but this is beyond THAT kind of tired.

    Amy, as you were talking about you jerk of a Neurologist I found myself shaking my head in agreement and wondered if my first Neuro guy changed cities. Mine told me the Monday after my Stroke (which was the previous Wed) that due to my age and location of my stroke I’d be my old self in 6 months….. Two years in and I am still fighting.

    It’s good to know that the fatigue is not unusual ad that I’m not all alone. I just wish “NORMAL” people could understand it, like my daughter and husband.

    • “NORMAL” people will never understand anything. I’ve resolved to not expect any understanding on their part. What I do expect from others is sensitivity once they learn about my history, and I haven’t so far been very successful with that expectation either.

  6. I have fatigue daily. It’s so bad at times that unless I’m really busy working on something I can literally fall asleep at my desk at work. I complained about it to my former internal medicine doc in GA and my new one in FL. The latter had me tested for sleep apnea and was insistent that was the reason for my fatigue. Needless to say, I do not have sleep apnea.

  7. Hi there,
    Do any of you take meds for the fatigue?
    My husband had a cerebellum stroke 15 years ago and the fatigue was horrible. His doc prescribed methylphenidate and it’s been a complete game changer for him. He no longer spends the entire day in bed.
    Wishing you all the best.


  1. Brain Fog and Migraines – mycerebellarstrokerecovery

Say things.................

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: