I kind of babbled something about feeling tired all the time and the fact that when I exercise often the worst part of the fatigue happens hours and sometimes days after the exertion is over, but.....I just didn't have the right words to accurately portray this life-changing experience. I blame my lack of eloquence on brain fog. Or a severe case of Christmas cookie overload. Whatever.
In retrospect, it seems that it would be a good thing for me to be able to effectively describe my experience with autoimmune fatigue, for a variety of reasons. One being the obvious - so that when I am asked, I would have the words at the ready. I've never considered myself blessed with a silver tongue, but mercy! Julia's tongue is actually more like lead these days, especially after any kind of energy expenditure. So having prepared a reasonable and accurate explanation for autoimmune fatigue would definitely reduce the doofus factor for me, personally; but would also allow me to take advantage of those rare opportunities to be an advocate for autoimmune disease awareness.
Yes, it would be a good thing to come up with a succinct, descriptive and accurate definition of my personal experience of whatever this thing is that leaves me drooling on my pillow for extended lengths of time, but this is a difficult thing to do. I've tried writing posts about autoimmune fatigue before here, here, here, and here, but still haven't captured it's essence.
Which leaves me looking at a blank computer screen still without those magic words that would explain it all.
Maybe the inability to define AI fatigue is actually the best way to describe it: so unpredictable in it's severity, duration and occurrences, and accompanied by emotional lability and memory lapses which only add to it's ability to evade complete description.
3 comments:
I exactly seconf you on that : it's so frustrating not to be abble to explain how you feel. And when you can't explain something people think it's not "real". For me the fatigue from Sjrogen is like th eone I have when I had Mononucleose, it's like an hzavy blanket in your shoulder. Every move take you more time and energy, and you are cut off the world.
AI fatigue is so hard to explain to ppl who dont have and AI disease. There is no way to describe it enough for them to understand.
I totally hear you. Just this morning, a new friend of mine and I were discussing some things I'm going through with my employer to address my II issues (look for a blog post on this as soon as my own fog lifts, haha), and he asked me "what's actually the most difficult thing for you to deal with day to day?". In my head, I went "huh?! Are you crazy?! THE most difficult thing? Pick a day, time of day, time of year, what happened the day before, what I'm planning to do the day after, and MAAAAYBE I can tell you what I'd be most concerned with that day...".
Outwardly, I stammered, sighed, and just said "it's all over the place, it really depends". I agree with you...if there was some way to really impart a sense of just how unpredictable in every way chronic illnesses are, we might get more of the message across...
Post a Comment