Cosplaying with Chronic Pain (Specifically Fibromyalgia)

     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 2017
Day 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?

A Day In The Life (Of A Fibro Flare)

Just a glimpse of my day with a flare.

I woke up around 3am to pee.  That’s not weird, we all do it.  This morning was different, though.  This morning when I went to move the blankets off of myself, I was greeted with excruciating pain from the right side of my neck to the left side of my ass.  I barely twist my torso or turn my head to the right.  I didn’t just sleep wrong.  The pain in my neck had started the day before, it was just way worse now from being asleep.  I made my way to my feet and almost fell back down.  My ankles were in quite a bit of pain, too.

[For those unaware, a fibro flare is what we call it when the pain is just way worse.  Many things can cause a fibro flare, including the weather, emotional stress, and physical stress.  For me, a flare caused by physical stress almost never lasts more than a week.  Flares in general can last anywhere from a day to several months.  I’m lucky today, I know what caused this flare.  I worked too hard.  My job isn’t physically demanding, but I lifted one too many light boxes, left myself turned to the side for too long, didn’t sit down enough, etc. over the last two days, and now I’m paying for it.  At least it won’t last too long, my guess would be a day or two, as long as I rest, take Epsom salt baths, do some gentle stretches, and be careful.] 

After I got back in bed, it was hard to sleep.  I had been extra tired from working a few more hours than I normally do, so I scheduled my day in a way where I could sleep until about 11am.  That didn’t really happen.  I kind of dozed in and out of sleep until my alarm went off.  It’s difficult to sleep when your body screams at you every time you move at all.  I had planned all week to work today, and one of my least favorite things is letting the pain ruin my plans, so I got out of bed, brushed my teeth, got dress, and had some breakfast.  I took a norco.  I usually only try to take them one half at a time, but I took a whole one.  I hate taking norco, it destroys my stomach, sometimes it gives me headaches, and it throws off my sleep cycle.  The pain was too bad not to. I put on some eyeliner before I left for work.  If I have at least a tiny bit of makeup on, nobody asks me if I’m feeling okay.  I hate that question.  By most peoples’ standards, I haven’t felt okay since I was 12 years old.  Okay for me is a terrible day for a healthy person, so “are you feeling okay” is kind of a surprisingly complicated question for me.  By the time I was about halfway to work, my range of motion had greatly increased just from moving around some.  Driving kind of forces you to turn you head no matter how bad it hurts, which helps up to a certain point on days like this.  Around this time, I started trying to decide how I wanted to word the fact that I could do all of my regular sit down work, but I would need help with any lifting that needed doing at all.  That’s when the feelings hit.  There are so many emotions that come with fibro, it’s infuriating.  The closer I got to the office, the more I felt embarrassed, ashamed, and guilty for what I was going to be asking.  I should mention that nobody there has ever given me any reason to feel this way.  I work with friends, and they’re very understanding and kind.  The only person who gets mad when I do this, the only person who accuses me of being lazy and not trying hard enough, is me.  I was mad that what I had done the last two days had been too much for my body to deal with.  Even though I didn’t feel like it was too much, I was mad that I hadn’t realized sooner that it was.  I was mad that I let myself get that far.  I was embarrassed to ask for help.  I was ashamed that I can’t be stronger.  I felt guilty because everyone else had worked so much harder than me all week, and I’M the one needing help now.  I got to work, I made my request.  The response was as it always is, as I had expected it to be.  “Just let us know what you need help with.”  I spent the day trying to avoid socializing.  It’s really difficult and emotionally draining for me to not be social, I’m an extrovert by nature.  I know that not talking to people is going to make me feel worse, but I just feel like if I talk to anyone, they’ll see the pain all over my face and think I’m weak.  I also know how ridiculous that is. 

I’m home now.  We ordered dinner, cooking was out of the question for me today.  My brain is all fuzzy and everything hurts.  I have homework to do this weekend, and an exam I have to take online tomorrow, and I’m not sure how I’m supposed to do well when I feel like this.  I’ll feel better in a day or two.  

School with Chronic Pain

I have fibromyalgia.  It comes with many daily struggles, but one of the biggest issues I’ve had to deal with has been school.  I’ve been in pain since I was eleven.  At first, there was no “fog”.  In case you don’t know, people with chronic pain sometimes have days where we just can’t seem to get our brains to work right.  We refer to this as “fog”, because it feels like our mind is foggy.  We know the facts we need are in there, we just can’t quite make them out, as though there is a layer of fog in front of them.  Every year that I’ve had fibro, there is been just a little more fog than the year before.  I was in theater in high school, and I love it at first, but by 11^th grade, I never knew if I’d be able to remember my lines at all.  Some days, I knew every single one of them.  Other days, I didn’t even know who I was playing.  This same problem arose in other subjects, like history, or math.  I would be taking a test, and I could tell you exactly what page the answer was on in the book, and where on the page it was located, but I had no idea what it was.  I felt like I was getting “dumber” every semester, and I didn’t know why.  Then there were the physical problems. Walking from the parking lot to the building was always torture.  I did have a few special “privileges” because I had a doctors note, so I was allowed extra time between classes, use of the elevator, and I could type everything instead of write.  This, however, brought up a lot of questions that are hard to explain to other kids.  I don’t know why I’m in so much pain this young.  I don’t know if it will ever get better.  No, I’m not feeling better today, it doesn’t work like that.  Now I’m in college.  It’s just as difficult, but nobody asks questions.  I’m an extrovert, so it’s not that I avoid talking altogether, I just keep the conversations away from those topics.  Most of my professors don’t understand what I’m going through at all, and I don’t expect them to.  Some days, I’m very active in class and I know everything that’s going on.  Other days I have to check my calendar to figure out what class I’m in.  Once I needed something from the office, they asked me what my name was, and I had to pull my ID out because I couldn’t remember.  I laugh it off when it gets this bad, but it’s really not funny.  It’s kind of terrifying.  I don’t tell anyone I’m scared because I don’t want to look weak, but how would you feel if you suddenly didn’t know which state you were in, or what your name was?  I have a system when this happens, if I can find a place to be alone, where I start saying aloud the most current facts about my life I can remember, and it usually sorts itself out after a minute or two.  I think one thing that makes college harder is that it isn’t the same thing everyday like high school was.  In high school, I went to the same classes at the same times every day, five days a week.  In college, some classes are on Tuesdays and Thursdays, others are Mondays, it gets a little bit more confusing.  The parking lots are also much bigger.  I can never help wondering what people think when they see me in the disability office.  I don’t look like someone who is in too much pain to write with a pencil.  I got my associates degree last year, and now I’m working on my bachelors.  Every year feels a little bit harder, I worry I won’t be able to do it anymore one day.  I don’t want to stop at my bachelors, but what if I have to?  Every episode of “fog” leads to all of these worries and fears that we generally choose not to share.  Every time we walk from one class to another, we are in so much pain that we wonder if we can do it all again in next hour, or tomorrow, or next week.  People with chronic pain who are in school are living completely different lives than anyone realizes.  School is a totally different monster for us than it is for some.  I have to say, though, for those of you who are doing it anyways, who refuse to give up and let the pain win, don’t stop.  You can do it.  You aren’t alone.  You are amazing.

Kids and Teens with Chronic Pain: You are understood.

Hello, I’m Victorya, and I’ve had fibromyalgia since I was a child.  Here’s my story:

I started ballet when I was three years old.  I was good at it, and I loved it more than I have ever loved anything else.  For nine years, I danced with all of my heart.  I got the amazing privilege to perform in The Nutcracker with the Moscow Ballet twice during that time, and I knew that’s what I wanted to do with my life.  When I was eleven, the pain started.  First in an ankle, then a shoulder, then random places at random times.  By the time I was twelve, it was so bad I could no longer dance.  I was beyond devastated.  I kept it together for my family.  I never let anyone in enough to know how much I was hurting emotionally.  A lot of people didn’t even know how much I was hurting physically.  Over the next four years, I would see many doctors.  Rheumatologists, allergists, a psychiatrist, and some random ones in between.  I prayed for healing for a few years, then I prayed for death for a few more.  I would wake up in the morning and cry over the fact that I had woken up at all.  Everything I had ever imagined myself doing was physically trying.  I didn’t even know what to do with my life.  I got about 5 different diagnoses, from juvenile rheumatory arthritis to general arthralgia, but one kept coming back up.  Fibromyalgia.  Most of the doctors I saw refused to put down an actual diagnosis on paper, because I was so young.  Apparently until you’re 18, unbearable pain all over everyday might just be growing pains, and something magical happens on your 18^th birthday deeming you diagnosable.  A lot of doctors suggested I would outgrow the pains, so I waited.  Nobody knew I was depressed.  I tried to talk about it to other kids from time to time, but I was told I had no right to feel like that, because I had two loving parents that didn’t beat me, and my family wasn’t poor. They didn’t understand what it’s like to live in pain, and I didn’t expect them to, so I kept it to myself.  I didn’t talk to my parents about it, because I didn’t want them to worry.  As much as I wanted to die, I would never kill myself.  I’ve always considered suicide a cowards way out.  I felt like I was constantly trying to prove my strength, to make up for the fact that I was in so much pain, so suicide was out of the question.  I heard cutting could help. I wanted to try it so bad, but everything I ever did, I was accused of doing for attention, and I knew that if anyone noticed I was cutting, it wouldn’t be “are you okay?” it would be “are you THAT desperate for attention?” and I couldn’t really handle that.  I started biting myself, which sounds stupid, but the marks don’t last more than a day so nobody noticed, and it made me feel a little better.  When I was fifteen, I had my wisdom teeth removed.  They gave me Vicodin.  I had never been giving narcotics before, so I got a little experimental, desperate to make the pain stop.  I was taking so much everyday for a couple of weeks that I couldn’t stand up for more than five minutes without puking.  It didn’t ease the pain, but it somehow made me feel better.  After a couple of weeks I realized I needed to stop, and I learned a thing or two about withdrawal.  I got older, grew up, got married, took a break from doctors, and finally decided to get back to finding an answer.  I saw a few more doctors, and it came back up.  Fibromyalgia.  I did all the research I could.  I tried so many prescription medicines, having already been through all of the over-the-counter stuff.  Nothing helped.  I tried pot, twice.  I don’t think it helped the pain, but it’s hard to say, because I have a terrible reaction to pot.  It makes me incredibly angry.  I didn’t know I was capable of being that angry.  It’s a really weird reaction, I know.  I’m almost 25 now. I manage to get through everyday.  I am always in pain, my idea of a really good day is about a 4 on the pain scale.  I’m not nearly as sad anymore. I don’t spend every day wishing to die.  I’ve accepted my life with fibro and figured out a plan for my life.  While it may not get better physically, it can get better emotionally.  You can learn how to live again and find a new purpose for yourself.  A lot of this, I’ve never told anyone.  For Fibromyalgia awareness day, everyone is listing symptoms to try and help others understand, but I want to help people understand what this does to us emotionally, particularly to children.  I felt so incredibly alone and isolated, knowing that nobody was going to understand, feeling unable to talk to anyone about it.  No child or teenager should have to feel like that.  Support Fibromyalgia awareness, let these kids know it’s okay to talk about it.  It’s okay to be incredibly sad, no matter how good everything else in your life is.  You are understood.