1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

Life Under Chaos

Blog entry posted by Dainty, Apr 17, 2014.

In a normal person's life, personal crises are occasional. They happen infrequently enough that one can excuse themselves from work or meetings or events or other responsibilities on account of that.

I began to think of this the other day when I realized I'm now well enough to attend events, even on a bad day when I'm "dragged" through them lying down at every opportunity and opting out of conversations. I'm still able to appreciate being there. The difference between now and all those years of being mostly bedridden and with extremely fragile health, is back then when I tried to attend anything, I swear every 5 minutes there was some major issue happening in my body demanding my attention. By normal person's standards, I would have simply gone home. But I got out so rarely that I had to have the satisfaction of staying for some time. So as other people enjoyed my presence, I did my best to enjoy theirs while also taking medications and trying to ignore my body's screaming. Because I wanted to be able to participate, to be there, to LIVE.

I was participating through chaos that other people cannot imagine. And I didn't realize just how bad it was until I recovered enough that it was gone. Nowadays if anything starts to get bad, either I have a medication that can quell the symptom or I leave. Freedom.

I don't totally have that freedom in the rest of my life, though. I set a personal meeting time with someone, then have an extremely stressful phone call with Social Security that leaves my brain scrambled and my emotions all over the place. Just afterwards I learn that an immediate family member is having a medical emergency. If I were a normal person with a normal life I would reschedule the meeting occurring just a few hours later, but I can't. Because for all I know, if I reschedule it for tomorrow I may need to be sleeping at the time from a rough night. Or then if it gets rescheduled again I may be doubled over in pain and unable to talk. These things happen; they're my normal, everyday life and I must be able to function under chaos if I wish to participate with regular people.

Someday, things will be better. For now, I just hope I'll be able to pull myself together enough that I don't make a complete fool of myself.
alex3619, Snez, kyzcreig and 5 others like this.
Dainty

About the Author

Dainty became ill as a teenager and spent 7 years mostly bedridden from ME/CFS, life-threatening MCS reactions, extreme food allergies/sensitivities, cognitive impairment, fibromyalgia, episodes of temporary paralysis and various unexplained emergencies. The past couple years she has experienced profound improvement from various treatment approaches. She's now tackling independence and continues to pursue healing full time.