From my journal: 2/19/18
Thinking again about the feeling that I feel - that others really don't understand chronic illness and disability - at least others who don't live it day-in and day-out.
I can understand why we [the chronically ill (CI)] would sound like we are complaining.
Every day we manage symptoms.
They aren't just irritants or the feeling of being tired.
There is the looming reality that one will not get well.
It's not a matter of resting and feeling prolonged relief - or any relief at all.
It's a 24/7 job.
Always.
Think of it as if you have a disabled child or loved one - and that you are their caregiver.
It's 24/7.
But, you can take respite by hiring someone to help, or if someone volunteers to help.
That isn't the case when one is their own caregiver.
And every chronically ill person is their own caregiver.
Yes, they have help.
But they have to live and function in their body, 24/7.
They can't hire out for respite...
Hmmm...interesting.
I just realized I'm using 3rd person.
I wonder why?
Why do I not say "our" instead of "their."
Ahh...probably because I switched to an imagine, a "think of it as if."
But look.
I went from first person, to second person, to third person.
First person, "...the feeling I feel..."; and
first person, "...why we would sound..."; to
second person, "...as if you have..."; to
third person, "...when one is their own..."
It's like I'm distancing myself from it.
Is that in order to try to see it more objectively?
Or is it due to still not accepting that I am the CI of which I speak?
Or maybe it's just the flow of the narrative in trying to get to a way to articulate.
I really don't like the term "chronically ill."
2 comments:
Me either ... but we are ... it is hard for people who have not experienced it to know what it is like to have to deal every day with an illness. I seem to have developed a third one ... gouty arthritis to add to my diabetes and ulcerative colitis. Sigh.
SP
Oh SP...so sorry to read about the gouty arthritis. I understand the *sigh*
It becomes wearisome and draining...a least that is how it is for me. And then I *sigh* and begin to figure what to do now to add the new thing to my management protocol.
I've been dealing with a new symptom this week. A dizziness like I've not experienced before. Been going since Monday, though I had a 1/2-day break. I spoke with the neurologist nurse this morning. It's a migraine with all my regular migraine symptoms but instead of a headache, I'm dizzy. Not sure which I prefer, the headache or the dizzy. :/
Re the term, chronic illness. I read an article the other day that used the term "health adversity." I stole it. Currently it sounds less draining to me than "chronic illness." And maybe it's just more denial on my part...like an adversity is more temporary than something that is chronic. I'm okay with that, for now...and will put in the category of coping instead of denial.
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