I’m
Victorya, I’ve had fibromyalgia since childhood. For more of my backstory, look at some of my
older blogs, like Kids With Chronic Pain, School With Chronic Pain, or A Day In The Life . Currently, I’m
a full time college student with a part time job, a husband who works full
time, a dog, and a rabbit. As you can
imagine, I stay pretty busy. When you’ve
had fibromyalgia as long as I have, which is currently about 15 years if you
count it “starting” when it actually got bad enough to change my daily life,
the pain is constant. It doesn’t
stop. Some days it hurts more, some days
it hurts less, and it’s a pain that travels throughout the body, so there is
variation and fluctuation, but it never actually stops or goes away.
I’ve never been good at “relaxing”. Just sitting on the couch, watching TV or
reading a book, drives me crazy. I have
to actually be doing something, that’s what I consider relaxing, so when people
started emphasizing how important it was that I relax more and expressing
concern, I started finding some new hobbies.
Of course, everything hurts to do with fibro. Just typing this right now is painful. I found some hobbies anyways, though. Things that hurt less, maybe than other
things would. As long as I keep it in
moderation, it would be okay. I got
really into crafts. I paint, I sew, I
make dream catchers, I love crafts! I
have also always loved superhero movies and cartoons and comic books, and
science fiction shows. Star Trek,
Battlestar Galactica (the reboot), and X-Files, to name a few. I’ve always loved dressing up, too. I started collecting costumes and costume
pieces when I was a teenager. Sometimes
I would dress up for no reason at all.
So naturally, when you put all of this together, I ended up getting into
cosplay. Like most convention-goers,
weekends spent at conventions are my escape from reality. Unfortunately, an escape from reality isn’t
an escape from pain. There’s no escaping
that.
I started putting together costumes. I got my sister-in-law to join me. We cosplay together now. I break the work of putting together costumes
up over long periods of times. I do a
little here and a little there, so I don’t cause too much pain. The conventions, though. It’s 3 days of walking around. Three days of wearing cute clothes that I
have to move carefully in. Three days of
being in a loud, crowded building, full of ramps and stairs and hard floors,
taking pictures with strangers who get all up in your personal space, putting
their arms around you. The recovery time from a
convention is longer every year. In the
days leading up to it, I’m excited and I can’t wait, but at the same time, I’m
scared and I dread that pain that I know will immediately follow. I’m not going to let the pain stop me from
doing something I love. I don’t go about
things the way I did at first. I’ve
learned better. I stop and sit down a
lot. Like, a LOT. When I sit, I find a place where I can lean
back against something. I even take
stretch breaks throughout the day, as far as my costume allows. I stretch before I leave and when I come
home. If my costume includes shoes that
don’t agree with my body, I bring flip flops and only put on my costume shoes
for photos. I make sure I have plenty of
Epsom salt before the weekend begins, so I can soak in salt baths each
night. A big problem with fibro is also
temperature regulation, so I often carry a folding fan in purse and try to keep
some sort of jacket in my car, just in case, and make sure I know which
concession stands have ice available.
Dallas Fan Expo 2017Day 1 of the 3 days I will be spending at the con this weekend. I’m already in so much pain, there is swelling in various places, but I’m stubborn, and I’m not going to let this pain ruin my fun. I had a blast today, just like I always do. Pain definitely makes it LESS fun, but I still enjoy it more than it hurts. Pain has taken so much from me already, it can’t have this, too. Day one costume: Gogo Harley-Quinn
Day 2: Yesterday I wore gogo boots all day, which weren't too bad. They do have a bit more ankle support than a lot of shoes, so that kind of balances things out. We had a pre-judging for a costume contest that we had entered, and my costume involved colored hair spray. I decided to just sleep in the hairspray so I didn't have to use as much the next day. This meant no salt bath. I hate baths, to be honest, so I wasn't too upset about it. I was hurting when I woke up this morning, but not too bad. I wore flip flops all day today, because the shoes that go with my costume are heels, and that's just not happening. I only put the heels on for the costume contest. We didn't win anything, but we had a blast and met some awesome people. It was definitely worth it! Day 2 costume: Harley Hepburn
Day 3: Today I woke up, literally shaking from pain. I took it super easy all morning, ate breakfast, took my pain meds, hydrated, sat down a lot, etc. I'd list all of my swollen body parts, but it'd just be easier to tell you that it was almost all of it. I washed my hair out last night, but the hairspray turns the whole tub brown, so I didn't soak in the bath last night either. I didn't have the energy to bleach the tub, wait for the water to get hot again, and then sit in the bath for a while before bed. Sundays are always the best days at the cons, because there isn't as much crowd, and we only go for a few hours. My costume today had cowgirl boots, which are really comfy. As everything comes to an end for the weekend, I regret nothing. I'm glad I went, I'm proud of my costumes, and I had so much fun. I've hardly seen my cosplay partner all year, so it was nice to spend the weekend with her, too. I'm finally soaking in a salt bath as I type this. I'm going to hurt all week, work and school will be a little more difficult than usual, but I'm going to go easy on myself and be careful. This is cosplaying with chronic pain, and the pain doesn't get the last say on this one.
Day 3 costume: Harley-Quinn Dallas Cowboy Cheerleader (my partner is Poison Ivy)
I feel like I should add that there is a medication out there that helps me a lot, but I had to switch insurance, and this particular med only comes in brand-name. My new insurance only covers generic meds, and without insurance, it's like $400/month. My doctor and I are currently trying to find a new medication that helps as much and doesn't cost so much, but it's a difficult task that we've been working at all year and still nothing so far. Three cheers for big pharma, right?
