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Day to Day and Moment to Moment

Friday, September 18, 2020

Feeling so incredibly done today. Done with feeling useless. Done with feeling capable one moment and unable to do the littlest things the next. There are literally times when I feel like, if my vision were just fixed, I would be back to where I was before the last concussion. Okay. That still leaves me with that hyperthyroid exhaustion and the RLS. I functioned through those. Not at my best but I was able to hold down a job, be a present parent, and help around the house and property.
Notice I said “times” and not “days” or “weeks.” Sometimes those “times” last 3 days. Those “times” are awesome. Sometimes those “times” last less than an hour. I felt like that the other morning. Brad would’ve gone to Walmart without me as he has done virtually all the shopping for months on end since the sounds and lights in most stores send me into sensory flooding pretty consistently. Occasionally though, if one of these trips is needed on a day I’m feeling particularly solid and capable, we give it a shot. I know that healing is happening every minute of every day so I know we need to push the boundaries every once in a while and see if the list of things I’m able to do has expanded. I felt good so I put on the sunglasses and headphones I live in went. It wasn’t as manic as it used to be due to the Covid restrictions and, to play it safe, we did not go to the grocery side as it has a loud generator-type noise and more offensive lighting. Brad immediately sent me to the garden area in the hopes it would be quieter and calmer than most of the store. Um. Not when they’re doing the major switchover to put Christmas out there. Very few customers but a lot of loading noise and open bays making the sound of the canned music echo painfully. I went back inside.
Within 10 minutes in the store Brad asked me, “Are you waning?”
Self-assessment time. Yes. I was using the shopping cart to hold myself up and to keep my balance. I was speaking slowly and poorly – slurring and mildly stammering.
“I-I guess. yeah.”
“Yeah. We’ll wrap it up and I’ll make another trip out later. Would’ve needed to for groceries anyway. Don’t sweat it.” We grabbed only the necessities that remained on our list and left.
We went to the pet store just to get betta fish as I had found both of ours dead that morning. We were the only customers in there so it was quiet (hint: pet stores are much quieter when there’s no one stirring up the critters). I chose my fish and got to see baby turtles and tiny snakes and make friends with a parrot. I had to hold onto Brad the hold way but we got in and out in under five minutes and headed straight home with my eyes closed and focusing on my breathing. We were home by 11:30am.
I got home. I went to my bed and lay down. For the next several hours I lay there so depleted I literally (yes I know the difference, I do NOT mean “figuratively”) had to spend several minutes to work up the energy every time I wanted to move an arm or leg, longer if I needed to walk to the bathroom. I was finally feeling strong enough to get up and come out to the front room around 6pm. I was not fully functional. I was able to walk out to the front room and sit in the chair. That’s it. Not feed myself. Not get a drink of water. Still took extra time building up energy every time I needed to use the bathroom.

Why did I write all this down? Because this is a consistent, regular experience for me. When I tell friends I’m frustrated at how little I can do and how long it takes for me to recover from the littlest stuff, they understand but really only on a surface level.

15 minutes. On the calmest Walmart run I’ve ever been on. I struggled to sleep because of the headache, tinnitus, and heightened RLS (that gets exacerbated anytime I spend more than a few minutes physically active – you have no idea how much I miss running) and woke up this morning sore all over, with a painful neck and that supersensitivity to all smells, sounds, light, etc. once usually gets when hungover.
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