Either Or, Never And
I got a haircut today. It may not seem like much cause for
celebration, but, for me, it’s a pretty big deal. After all, it means that I am halfway to
meeting one of my resolutions for 2015 — getting my hair cut twice. In one
year. Whoa. Crazy I know. Way to reach with that goal.
But, it is indeed a pretty big
goal to have given that I haven’t had more than one haircut a year for probably
the last three years. My last haircut
was almost a year ago. Living with
Chronic Fatigue Immune Deficiency Syndrome (the Institute of Medicine recently
recommended changing the name to Systemic Exertion Intolerance Disease, or SEID)
my life has been reduced to a series of “either or” choices I make throughout
the day. There are no “ands.” Yes, everyone has to choose what she does each
day, but for someone with a chronic illness those choices can be much more
limited. Things I took for granted
before I became ill I now have to plan with meticulous detail. My months are planned out two at a time on
whiteboards hanging in the hallway. Each
activity is allotted a certain number of minutes so I know when I’ve reached
what — through much trial and much more error
— is my total limit of all the activities I can handle in a given day before
increasing my symptoms and risking a crash, or worse, a relapse. Each day I write down how many minutes I spend
doing my various activities so I know when I’ve reached the limit. On my good days, I make it all the way to the
top of my allotted time. It’s been about
three years now — since my last significant relapse — that I’ve successfully reached
that limit more than three days in a row.
And that has just been in the past month.
My list of activities fills quickly with just the basics
and doesn’t leave much room for luxuries like getting a haircut. I have very little time for “free” activities.
So the “either or” choices come in.
I am fortunate to be able to continue working
part-time. My working hours take up by
far the most of my available time and energy limits. And, often, by the end of the day, I have
nothing left in me. Working days I don’t
even wash my hair. On the really hard
days, I just do a quick wipe down with the facecloth and forgo a shower,
thankful that I work from home and have a husband who keeps me supplied with French
perfume. But those are the choices — I either work or I have clean, pretty
hair. A ponytail holder has become my
best friend.
My non-working days are full of those “either or”
choices. I either clean my house or I
do agility with my dog. I have chosen
agility. Selfish perhaps, but that time
in class is sacred to me. For a brief
moment in time I just enjoy. I need the
break from my illness that I get from seeing the joy on my dog’s face from
having so much fun, of learning something new, of moving, being part of
life. Sure, when I come home I’m in bed
the rest of the day and lying on the couch in the evening. It’s either or, not and.
Other days, I either cook or I spend time with my
husband. Some days I cook, making enough
for leftovers for much of the week that can just be reheated or pulled out of
the fridge and eaten as is. Some days,
my husband and I enjoy an outing and we eat frozen foods or takeout the rest of
the week.
I either go to the grocery store or I do pet therapy. I do pet therapy visits up to three times a
month. Groceries can be delivered, my
husband can go, meals can be delivered or I can do short trips on days I don’t
have visits. Shopping wears me out. Sometimes it takes several days to recover
and I’m unable to prepare the food I’ve gotten before it goes bad. And, again, I need to remove myself from my
illness. I need to think of life outside my
illness because if I let it, it could be all consuming. The feeling I get from knowing that no matter
how hard so many of my days are that I am still able to make even a small
difference to bring some happy to someone else’s life is a much better feeling
than I ever could get from a haircut.
Yet, I actually cried as I left the salon today. I felt like such a dork. My haircut was simple, just a few inches off,
enough to get rid of the split ends and long enough that I can still pull it
back in a ponytail. Still, it made me so happy.
It took maybe five minutes and felt like such a normal thing to do. But I know how much effort it took for me to
be able to get there. I’ve been planning
on getting my hair cut on a “free” day for about six months. Most of those days, however, I didn’t even
get an either or choice. My illness
decided for me. I lie in bed, hoping to
recover enough to spend some time with my husband over the weekend and be ready
to go back to work by Monday to start over again. Today, school was canceled, which meant a
scheduled pet therapy visit was canceled.
I had an unexpected free day. Not
only that, I had that unexpected free day at a time I had the ability to leave
the house. Maybe once in a while I do get an “and.” For sure, that is something worth
celebrating.
