One of the big challenges that has come about lately since I’ve noticed my oxygen levels & energy bouncing around is feeling extremely forgetful, slow to react, & lagging in focus.
I know I am not alone in this. Even for those of us who don’t have a chronic illness, we have a “brain fart”, misplace something important, have a coordination issue with a seemingly simple task. We forget things even with a list occasionally. It’s of course embarrassing, but part of being human.
For some people, they really don’t want to acknowledge it or talk about it when it becomes a bit more frequent or gets in the way of their ability to get things done or feeling frustrated because getting things done is more difficult. They may see it as a personal flaw, even when they know it’s not. It has little to do with us & who we are.
But we should discuss it because it’s worth the conversation, for ourselves, & others to come up with a better game plan.
From my own experiences lately, I relate to people on chemotherapy, have waivering oxygen levels, or have other illnesses that affect their ability to remember things on a daily basis on how they feel when the fog moves from an occasional strand of mist, to some days a dense concentration of soup-y thickness.
It’s hard. I find I’m spending more time indoors & in my room temporarily (although I will make a push to try and get out once a day) because I feel clearer when I’m on continuous oxygen. I feel less so on my portable concentrator even at it’s highest level. I don’t feel it supports me as well internally anymore, even though on paper readings it says I’m getting what I need. I can tell a complete difference & feeling from the continuous oxygen than the intermittent. It’s hard to describe.
I believe too this is why I’ve been spending a lot of time on Twitter in chats & researching my blog. Then also online support groups on Facebook & felt less like going out or sitting in other rooms. When I’m getting what I need, I’m clearer in thought. I’m not hiding out, just recharging my batteries the best way that it’s working for me. However, the recharges I’m supposed to be getting from my jet pack, are “puttering” out.
I’m working on changing an oxygen supplier which should move me to continuous, I started early & have nagged to keep it moving along. Yet I know these things take time. Probably moreso with Pope mania & NICU rounds to contend with. Both sets of pulmonary doctors have been busy.
The new supplier I call for an update every 2 days if they haven’t called me first. I know this will get resolved soon because I’ve spoken to everyone I need to enough & of course will start laying more grease to the “squeaky wheel” each time. But I can’t be the one to write the script.
So I make due for now with what I have. I’m just glad I picked up on the sense of trying to get things moving when I did, because it’s now becoming an issue that is inconvenient but not completely unmanageable. It’s insane even with my professional skills, how much red tape there is to cut through for just a change of equipment & service. Then again, knowing I’ve done this work for others, I’m not surprised.
I was out for a few hours yesterday but much longer than anticipated because of a brain fog issue. I went out to try & escape some other issues I was having with feeling a bit more “off” physically recently. Honestly, I just needed a day to feel I was out in the world doing things I was doing before.
The key item lost in the center of the fog is replaceable & ultimately just inconvenient but not the end of the world. I know this now. But I also needed a day to come down off it, which got me thinking about this post & conversations with professionals & others. I also know that the oxygen glitch is at the crux of everything because it’s magnifying the effect in other ways than just unpredictable energy levels.
In looking at abilities to combat brain fog (or oxygen brain) difficulties, I’ve been keeping up any way I reasonably can without trying to beat myself up or just staying completely dormant under my covers.
I know it’s transient. I’m feeling it more potently because of oxygen issues & other means right now. Ultimately, I learned last night that if I do need to take most of this weekend to just be “tethered” to my continuous machine & “veg out” instead of taking care of every single problem that pops up in the mail or I’m made privy to elsewhere…maybe that’s what I need to do. Maybe I’m doing myself a favor & there’s nothing wrong with that. A weekend to wind down however I want might be the best strategy now.
I’d like to hear from some of my other friends with chronic illness, rare disease, spoonies, or other friends who have experienced brain fog on what strategies you’ve come up with to tackle this yourselves.
I have a decent toolbox of a lot of coping skills, but could always use more. I would like to have some dialogue & have some strategies from people than just what’s listed in this article. I’d like to see how others think creatively & successfully to work around it.