It’s Sarcoidosis Awareness Month,
and I’ve been slacking.
Don’t get me wrong – I’ve been
working my butt off all month, and for several months before this (and yet it’s still huge! But that’s another issue for another day lol). We’re not even halfway through Sarcoidosis
Awareness Month, and already I’ve coordinated a group to raise awareness as
part of the live audience of a talk show, hosted a Sarcoidosis Walk ‘n’ Roll to raise
awareness, raise funds, and show all Sarcoidosis Warriors that they are not
alone in this, and I’m currently preparing my agenda for a sarcoidosis support group meeting
this coming weekend. I’m also registered
for 2 other Sarc Walks in New York over the
next 2 weekends, and the national FSR event in New Orleans the
week after that. And yet I feel like I’m slacking.
Every day, Facebook gives me a
reminder of what a slacker I am. I mean,
it doesn’t say that exactly, but that’s
the feeling I get when I see the On This
Day reminders of what I did for the past 3 years during Sarcoidosis
Awareness Month.
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| Purple boots to match my purple scarf |
- In 2016, I took the #SarcoidosisPurpleChallenge, and posted pictures every day of something purple that I was wearing or using; as often as possible, I included a note about why or how that related to this crazy disease I’d recently been diagnosed with after 8 long years of trying to figure out what was wrong with me.
- In 2017 & 2018, I posted some fact, statistic, description, article, or quote about sarcoidosis every day. The goal was to not just raise awareness about a name that no one could pronounce, but to really educate people about what sarcoidosis is and how it affects people.
But this year,
I just haven’t been doing that. And the
reality is that the reason I haven’t done as much is the reason I need to, the
reason I can’t, the reason I want to and don’t at the same time.
I’ve just been
so exhausted for weeks. Months,
really. And when I say exhausted, it’s
not just like when you stay up too late or don’t have your coffee in the
morning. The fatigue
that comes from a systemic inflammatory disease like sarcoidosis can be
completely disabling. Just getting from
the bed to the couch can take all the energy I can muster some days. If I can gather the strength to go into the
kitchen (an hour or two later), I realize that preparing an actual meal is just
more than I can handle right now. And
not eating well certainly contributes to the weakness, but it becomes a
self-perpetuating cycle, as there’s now even less energy, so it’s just not
possible to prepare a meal that might give me strength. Honestly, I’m sitting on the couch right now,
feeling nauseous, and looking at the bottle of ginger ale on the other side of
the room. But I’m waiting ‘til my
husband gets home and can bring it to me, because I just can’t get up right now.
What really
stinks is that there’s a mental exhaustion that goes along with it, too. I try to tell myself that once I’ve made it
to the couch, I can just get on the computer and do a million things – I don’t
have to get up or do anything physical. But
when it hits this hard, it’s like I’m in a daze. I can stare at a blank screen without an
idea of what I was planning to write, or I can read an email 3 times and still
not know what it said (let’s not get into how long it’s taking to write this
piece). So I haven’t had the
strength/energy/time/focus to post something about sarcoidosis every day, and
for that, I feel like a slacker.
I go on to
Facebook or Twitter for a little while most days, and my feed is flooded with
sarcoidosis posts: some Sarc Warriors posting facts every day, others posting
pictures as they get their infusions or go in to the hospital, and other FSR
Ambassadors sharing their efforts, getting proclamations about
Sarcoidosis Awareness Month or getting
landmarks lit up purple for Sarcoidosis Awareness Day. (Ok, technically, I’m getting a proclamation
for my county, too, but it didn’t come when I was expecting it, so I guess I
didn’t count it as an accomplishment.) I
see everyone else posting every day to help people really understand this
disease better, and I feel like I’m not doing that, so I’m slacking.
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| See more post-event thoughts |
I have been
posting some, but it’s mainly been about the trip to the city for the show, the
Walk ‘n’ Roll fundraiser/awareness event, or the upcoming support group meeting. So I feel like that’s raising awareness about
events, supports, & resources, but not exactly educating about the disease
itself. And I really want to do that too
… but … then I just can’t focus enough to get to that one more thing on my too-long-but-forever-growing
to-do list.
Over the past
several months, I’ve had a lot of running around to do, and I’ve been sick a
LOT. Yes, I’m chronically ill, so
technically I’m always sick … but I’ve been extra
sick, too. From an upper respiratory
thing that worked its way down to my chest at the start of my vacation in
October-November to a post-travel flare that took me completely out of
commission until early December, and sick again to miss Christmas with the
family and my January support group meeting (thank goodness I was able to ask
another group member to take the lead for the meeting that evening). There were even days I was too sick to go to
the doctor (yes, that’s a thing), and had to reschedule appointments. I pooled all the strength I could (with the
support of my incredible husband) to get through Ambassador/Advocacy trips to Washington,
DC in February and March, but really paid the price for it and could barely
function in between or afterwards. I
lost weeks at a time to uncontrollable sweats, chills, aches, dizziness,
weakness, nausea, and unbearable pain.
And all I could think about was how much I wasn’t doing for my upcoming
events. Last month, I had to miss the blood
drive that I’d been planning for months (fortunately, my mom was able to take
the lead on that in my absence … but I still haven’t gotten over the guilt of
not being there myself). When I was
asked to speak at another event early this month and actually passed, everyone
close to me knew something was really
wrong (yet I still feel awful about it).
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| www.stopsarcoidosis.org/advanced |
So … I may not
be posting a fact every day, but I’m sharing this with you – not to make
excuses for the things I have not done, but to try to give a realistic picture
of what it can be like to live with a disease like sarcoidosis. Some people have barely noticeable symptoms,
and go into remission quickly. Others spend
weeks in hospitals, with numerous treatments, surgeries, even lung or heart transplants. Some even lose their battle with this
disease, because there just isn’t enough information out there. And because the disease causes widespread
inflammation and the treatments lower our immune system (which is supposed to
keep you healthy, but goes haywire with us), there’s no such thing as “just” a
cold. We’re more susceptible to
infections, they can affect us more severely, and we don’t have the natural ability
to fight them like healthy people do.
There really is no telling how we’ll feel from one day to the next, whether
we’ll achieve remission, or the sarcoidosis will progress to more and more
organs. We don’t know what treatments
will work, whether we’ll develop the side effects, or how long they’ll last
(not to mention whether insurance changes will mean we can no longer afford the
treatments that do work), so it’s easy to fall into a depression and lose
ourselves. I generally try to focus on
what I have rather than what I don’t, what I still can do, rather than what I
can’t, and always project positivity.
That means I usually don’t write about a negative experience until I’ve
been able to turn things around somehow – I don’t talk about a bad flare until
I’ve come out of it stronger. But I’ve
been waiting to feel “better” for far too long, and if I wait much longer,
Sarcoidosis Awareness Month will be over.
I should note
that in my head, I know I’m not
really a slacker, and these are my own issues: unrealistic expectations I set
for myself and unreasonable pressure I put on myself. Still, I often say (for many different
situations) that there can be a big disconnect between what we know and what we feel. And going from being
an overachieving workaholic to developing a disabling chronic illness can make
being sick feel like being a slacker. That’s
just another thing to be aware of with sarcoidosis.
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