The Art of Chronic Illness
As I have sometimes mentioned, I have a chronic illness.
It’s number three on the arthritis list, and sometimes I think it’s number one,
but that’s just me. Most people think that there are just two version of
arthritis—wrong!! When I started this little journey I was told there were 60
forms of arthritis, but if you count the subheadings in the lists, it’s
probably more like 120. You know Venus Williams’s Sjogren’s disease? That’s a
form of arthritis, although it doesn’t have the word in the title.
Unfortunately, any form of arthritis is pretty much a chronic illness—you get
it for life; there is no cure. Fortunately, for mine there are drugs that help
mitigate the problems to some extent.
But what do you do with those problems? In my case, I’m
lucky; I’m considered to have a mild-to-moderate case, and I really can’t
imagine how bad it gets with the moderate-to-severe cases because I’m really
not happy right now with where I am with this. Apparently I’ve been in a
“flare” for almost two months now (based on what my rheumatologist said the
other day), and counting. He can’t predict when it might end; all he can do is
tweak the meds in order to try to make things slightly better. Hopefully, the
weather will improve and the rain will stop soon. A couple of drier, warmer
weeks will definitely help things improve and my attitude will turn up again. (Frankly, it's been so rainy here that not only are we out of the moderate drought people were predicting, but I haven't had to water the lawn yet, and that's really unusual for late June. But, that's also beside the point.)
The real issue is in deciding that you will live your life
in spite of the disease, and not let it dictate what you will do. At least,
that’s how I do things.
So, what happens?
I refuse to give in to the problem. Therefore, no matter
what, I get out of bed at just about the same time every weekday, sometimes
more slowly than others, and I go about my business. What does that mean? I
just touted up numbers and essentially, I just about doubled my business income
this quarter over the last one. Now, having said that, I should admit that the
first quarter of this year was not great. There just wasn’t enough work out
there from my clients and I had trouble finding new ones. Fortunately, in
mid-March I picked up a very steady assignment plus another new client, and had
work from some of my steadier clients. It was a big help, and this next quarter
is also looking decent. But the issue is that I never missed a deadline, and only
had to cancel once—and not for arthritis, jbut for a stomach bug that made
things difficult.
I have crocheted for years. I committed to making a
dog-shaped afghan for my granddaughter. It was an easy pattern that went fairly
quickly, but the winter and spring were not good for my kind of problem and I
had to stop for a bit so my hands could recover. Oh, and I had then said I’d
make a matching afghan for her very close friend. What I thought I’d deliver by
late March was actually delivered at the end of May. Not sure when I’ll be
picking up a crochet hook again, but it probably won’t be one of the really
skinny ones unless I have a thick handle on it. But, they got done. Now, I’m
working on an alphabet needlepoint for the anticipated second grandchild—I’ll
need it done by Thanksgiving. Any idea how many little holes you have to fill
with the thin floss and really thin needle? I work for a couple of hours at a
time, and then come back a few days later and have at it. No matter what, it
will be done, and framed, on time.
My family came to visit on the Memorial Day weekend, and I
kept up with everything. Yes, I sat down sometimes when I got too tired but I’m
hoping it wasn’t wildly noticeable. They know my hands are not in great shape
so my issues in picking up my granddaughter were not considered all that big.
After she left, I sat down for the afternoon—and cleaned up more the next day.
Everything gets done, but on my schedule.
What’s the point?
If I were to let the arthritis have the last word, none of
this would happen. I’d just sit here with an e-reader (much lighter than an
actual book) and do next to nothing. Instead, it’s better for anyone with a
chronic illness just to live. I still go walking as often as I can (usually the
floors are flat there; if there’s even a quarter-inch lip on a sidewalk I’ll
find it and fall over it so the mall is just better). The issue is to choose to
do; not choose to sit. I know that not everyone can do that, but then again, I
believe that even if my illness was in the severe category, I’d make the choice
to do I have to believe that everyone can do something, even if lying down; it’s
the only way we can have productive lives.
Even my rheumatologist is sometimes surprised that I keep
going regardless. My impression after my last visit was that he wants me to
slow down just a little bit in order to handle the flare. My greatest fear,
though, is that if I give into problems any more than I already do, it will start
to take over. I imagine that at some point in the future I will have to slow
down to accommodate it, but right now, I just refuse to let it further impact
my life.
I think that dealing with everyday life along with a chronic
illness is an ongoing fight for everyone, but has to be done on our own
terms—and those are different for every “victim.” With any luck, no one else
will notice my fights.
And yes, it’s been a long time since I’ve posted here. The
weather and the illness were part of that issue, as was the avalanche of work. Plus,
can’t seem to find the lists of topics I have on index cards on my desk. I
write them down as I think of them, then can’t remember what I wanted to do.
That issue will be handled this week when I absolutely promise to clean out
that desk. I’ve got a new work setup that I think will be better in the long
run, and it’s time to clean out anyway. A good purge of “stuff” always makes me
feel better.
