It's been a minute since I have had anything to say regarding my life after my "massive" stroke. This is partially due to the fact that I have been working so hard to not lose the progress that I was able to achieve, but also because I can no longer drive myself places, and I am often housebound and have nothing new nor insightful to say.
So, I have been working at my PT/OT/SpT (Physical therapy, occupational therapy, and speech therapy) exercises, and trying not to drown in dirty dishes. It's not just that I can't physically apply enough pressure or hold them steady in my right hand without being afraid of dropping and breaking my dishes, but also that I have always hated washing dishes, and I just generally avoid them. Haha
But seriously, some days, I cannot bend over to unload or load a dishwasher without the world spinning and my falling due to vertigo, not just the inability to hold things still and have the grip strength to not ruin my dishes. If you think about a 3-4 year old doing dishes, you can see about my level since the stroke...but that's TONS better than those weeks when I couldn't even feel my right side at all, much less have any strength or coordination in it.
Some of us have weird "deficiencies" (medical term) that I prefer to call stroke leftovers. One of mine is a permanent inner ear issue. My brain literally died in that area, so I get unpredictable bouts of vertigo and confusion because my eyes and ears don't always sync up (think of your TV when the sound is not in sync with the movement of the actor's lips). I also see things permanently skewed off-center, so trying to get things where they need to Actually be is often a challenge, too. I have quite a list of these deficiencies, and they make life far more "interesting".
Each person who has had a stroke has different quirks. Each of us has to learn to embrace them in our own way and time.
This past weekend, I "chicken-winged" in church after holding the song book in my right hand on a particularly weak and exhausted day. The "chicken wing" is that weird hand and arm thing that is common across a lot of stroke survivors at some point of our journey (Our hands want to form a claw and our elbow and forearms want to tuck into our chest, rather like a dinosaur arm). This spasticity is normal for a lot of stroke survivors, as the body wants to constrict in the arm area, and any other area where there might have been some fatigue, stress, or damage. I almost started to cry in the pew. I frantically started my stretching exercises for that hand and arm. (funny side story: my physical therapist attends the same church and probably would have known exactly what had happened).
Every time that it happens, I feel SO self-conscious, and I rather blame myself. Like I am wrong to have a naturally occurring thing happen...or rather I am wrong for LETTING it happen. Neither of these are true, and when I am not tired and/or upset with myself and self-conscious, I can sometimes forgive myself and accept "the new me". Other times, it's so hard that I have full-blown panic attacks and feel like I am dying, usually happening hand-in-hand with extreme exhaustion.
(**Side Note: I have survived not only my "massive stroke", but also cancer and epstein-barr, and struggle with a type of lupus. Your loved one, or yourself, may also feel these ridiculous bouts of fatigue from time to time. PLEASE allow yourself time to heal, and understand that rest and taking care of oneself is the only way to move forward. Please don't do what I do, and don't blame yourself or get angry with your body).
I find myself struggling SO hard trying to look "normal". Part of that comes from my family (who are always there for me, but desperately want me to never need to call attention to myself. They hate that I Need my walker...and I just don't leave their house on wheelchair days). BUT Most of that comes from myself and my need for acceptance and to avoid being shunned for being different. I have several friends who don't include me in a lot of activities because they don't think that I can do it or enjoy sitting there while others enjoy themselves in various pastimes. Sometimes, they are exactly right: I would never enjoy 110* heat on a scorching hot summer day on a beach. Aside from the mobility issue, my meds make me physically ill in that kind of heat. Other times, I wish they would invite me to karaoke and Cards Against Humanity nights. But, that's also just life.
My point in this post isn't a pity party. It's to say that there might be a time that your loved one or yourself who is a stroke survivor has low self-esteem issues. They might need an extra hug or 50. They might need professional help or antidepressants. They might need a massage and a makeover. Whatever it is, please handle with care and help, if you can. Even if it's just with verbal support or a prayer/happy thought, sometimes, that helps a lot. Please don't add to their already full plate of anxiety and self-doubt or low self-esteem. I promise you, we've got that covered.
Thank you!! 💖
