Healing Art Showcase Piece

   "It often feels like your options are to lose yourself to your symptoms, or lose yourself beneath the side effects of the medications that correct those symptoms. Sometimes you have to reach for help, but you can break through and overcome it all."

This is what I recently submitted for a healing art showcase, a photograph and a statement explaining it, but lets talk about this more honestly.  It's a mental health healing art showcase, so I kept my statement vague enough to be applicable to mental or physical health.  I'm far more familiar with physical health, but right now everyone is far more interested in/focused on mental health, so I went along with it and kept my art piece and statement open to interpretation. 
They also wanted it to be uplifting and inspiring, so I wrote some crap at the end there that I haven't actually managed to accomplish myself.  I don't know anyone who has.  This is the whole reason we want to cure the condition rather than manage the symptoms.  Reaching for help, trying to overcome debilitating symptoms or medication side effects, it isn't something you can just "overcome."  You have to choose which is less debilitating.  Will you be able to get through life and function better with the side effects, or with the symptoms?  This is a choice so many of us are forced to make.  Sometimes, I can't even decide.  Savella helps the fatigue for me, and nothing else does, but it also upsets my stomach very much.  It basically depends on what is going on in my life at the moment, and how easily I can access a bathroom.  Then again, sometimes I'm so tired I have to miss work or class because I can't wake myself up enough without it to drive that day.
Recently, Lady Gaga told everyone about her struggle with fibromyalgia.  She has ups and downs like the rest of us, she has flares and she has good days, and when she is having a good day, the media likes to report that she is "recovering from her fibromyalgia."  This is the kind of crap that is confusing the world, and now I'm honestly guilty of being part of the problem by making up some inspirational nonsense because that's what people want to hear.  On one hand, being positive and inspirational and saying things that aren't quite right like fibromyalgia is something we can overcome, or recover from, gets more attention.  It gets people to recognize it more, which is definitely a major goal right now.  On the other hand, now people think that it IS something that can be overcome.  Luckily, I kept mine vague, so I could have been talking about overcoming symptoms or side effects from something that IS possible to recover from, but the media sources who keep talking about Lady Gaga "recovering" are going to get a lot of people looking at the rest of us with fibromyalgia saying "why aren't YOU recovering?" or, when she does have another bad flare, fans will be furious that she had to cancel concert dates for something she has already "recovered" from.
I don't have a closing statement, here.  I have no nice, neat conclusion, because that isn't how fibromyalgia works.  I do encourage you to reflect on the points made here, though.  Think about the pros and cons of the way you present an illness before you start talking.  My other point was that sometimes you have to choose side effects over symptoms, and there are people out there who will tell you that if you are taking a medication that you know has negative side effects for you specifically, then you have a problem.  It isn't that simple.  If the side effects are more manageable throughout your day than the symptoms it manages, you aren't just automatically some sort of addict for continuing to take it.  It's okay, you're fine.

Painkillers: Breaking the Stigma

Painkillers: Breaking the Stigma

Let’s talk about painkillers.  I’m sure you’ve seen similar sentences before, followed by a lecture about the dangers of narcotics.  That’s not what I’m here to talk about.  Anytime anyone talks about narcotics or opioids today, it’s all about the evils of the drugs.  I understand why this happens.  They are abused a lot, they are dangerous, they can ruin your life or even end it.  That isn’t ALL they do.  This December, I will be finishing my bachelor’s degree.  Last year, I went to my sister’s wedding and I danced, and I didn’t spend the following day in bed, or next to a toilet puking because the pain was so unbearable.  I maintain a fairly clean house and a job.  All if this is because of narcotics.  When taken properly and carefully, prescribed by a good doctor with a fair deal of monitoring, these drugs are changing some of our lives for the better.  There are a lot of people out there taking opioid medication for pain, and they do come with negative side effects, but if they help enough to increase our quality of life even WITH the side effects, and all other options have been exhausted, then most pain management specialists will determine them worth taking. 

With this decision comes a lot of harsh judgement, though.  People hear so much of the negative and basically zero of the positive, so when they find out you take serious painkillers, they immediately start making assumptions.  I’ve heard people say they would be uncomfortable with someone taking those medications being around their children.  I’ve also nannied in the past, and have always been straight forward about my situation, and there have never been any issues.  I function on painkillers like you function without them.  If anything, people who know me and have seen me with and without them would probably feel more comfortable with me TAKING them and watching their kids.  It’s really hard to keep a clear head when your consumed with pain.  You can’t move very quickly, which I’ve learned is actually a pretty important skill in watching multiple little ones, and it’s hard to pick them up.  Another assumption people make is that everyone who takes them regularly is an addict.  That’s not how it works.  This is where being careful and having a good doctor comes in.  Those of us who do take them regularly, and properly, usually worry about this a lot, actually.  I recently tried a new doctor in an attempt to save money, and he looked at my medical history, saw that I have been taking narcotics for pain, and immediately decided I was an addict and needed counseling.  I’ve been to many doctors due to moving, and I have heard of people experiencing this, but until that day, I had not experienced it myself.  I’ve been in pain for a decade and a half that has gradually gotten worse throughout the years. I was hardly able to do anything a few years ago and it was terrifying, I had tried everything except for serious pain medication.  I had been avoiding it because it is scary, it does come with a stigma attached and I didn’t want to be a drug addict.  I had a doctor explain to me that it might be my best option, we would be careful and pay close attention to everything, no secrets, just give it a try.  It changed everything.  Every doctor I’ve been to since then has examined me themselves, looked at my history and everything I’ve tried, and determined that yes, that is in fact my best option until something better is discovered.  This new doctor was a terrible doctor in very many ways, but the way he treated me because I take narcotics was the most horrible thing.  I cried all the way home.  I’m still crying, and that was a month ago.  I went back to my previous doctor after that, who was also shocked and horrified that I had been treated that way.  That is a very ignorant way of thinking, especially for a doctor.  I’ve told everyone about all of the other reasons he was a terrible doctor (like telling me that all of my pain, which is worst in my knees and ankles, is actually being caused by neck degeneration which requires expensive injections?) but I kept this part quiet, because I’m scared that people will find out and start thinking that I am just another drug addict, lying about pain to get drugs.  I wasn’t lying when I was twelve years old and had to end my dance career.  I wasn’t lying all the times I had to sit out fun events because of the pain growing up, without decent medication because I was too young.  I’m not lying now.  I’d rather be living a normal, physically active life than taking painkillers to live a normal-ish life, mostly sitting down.

What I’m trying to say is that opioids, when taken carefully and properly, as prescribed by a good doctor, can be a good thing.  When abused, they can kill you.  If you aren’t careful and mindful, you can become addicted and end up in serious trouble.  They are also bettering peoples’ lives.  They aren’t only bad.  They aren’t only addictive.  They aren’t only dangerous.  When you find out someone takes them, don’t start judging them, or throwing out facts about how bad and dangerous they are to them.  They most likely know.  If you know they are abusing them, or getting them illegally, or you knew them before they took the medication and there is definitely something wrong now, you should say something, absolutely, but just being on pain medication does not mean someone needs a lecture or your judgement.  Break the stigma.

Chronic Pain: Am I Doing Enough? (And Why Don't I Qualify For Disability?)

 Hello, Victorya here.  I’ve had fibromyalgia since 2001.  I am 27 years old now, and 2017 has been a pretty rough year.  Job issues, insurance issues, I had found a medication that works for the first time in my life a couple of years ago but cannot afford it this year.  This also happens to be my senior year in college, so I was really counting on being fully functional, but I’ve come too far to quit now.

Chronic pain effects your life in many ways. 

When it starts plays a very big role in how it changes your life.  I was a child, I had to eventually quit dance, and going to school got considerably harder over time.  But I was young.  With youth comes resilience.  I adjusted, I managed, I learned how to live with it.  I didn’t have bills to pay, I didn’t have children to care for.  By the time I DID have bills to pay, I no longer knew life without pain.  I was used to being this way.  When you are an adult with an adult job and adult responsibilities and the pain becomes significant, whether gradually or suddenly, it is much more disruptive to your lifestyle.  Quitting dance for a child who had always danced and had never even considered other options in life seems rather disruptive, but there was still food on the table, a roof over my head, and people loving, supporting, and believing me.  It is quite different for adults.  First of all, there are all of the doctors appointments.  For about two years, I think I had a new appointment every month at least, trying to get answers and find a way to fix it.  That’s a lot of time off of work right there, and working is harder with all of the pain of course, so a lot of people end up taking a leave of absence to just go to all of the doctors appointments at once to figure it out and get back to work.  When the answer comes, and it says “this is your life now”, it is pretty shocking news.  It is hard to accept that you are just going to be in pain forever, especially when the pain isn’t just in one place.  So then you have to learn how to work like that, if you can.  It depends on your job, really.  Even a nice office job with a big, comfy chair is going to be difficult with all of this new pain.  The pain tends to disrupt sleep, too, so now you’re exhausted, and in pain, and trying to work 9-5 to keep food on the table and a roof over your head and pay off all of these doctors who, in the end, basically just said “deal with it.”  You also have to keep your laundry and dishes clean.  You have to keep food in the house, and you soon learn that grocery shopping is a pretty big task itself, with all of the walking and reaching and temperature changes throughout the stores. 

There is also the emotional toll that chronic pain takes on all of us.  We try to stay positive, but there are so many things eating away at us all the time.  Humans hate uncertainty.  We hate not knowing what the weather will be like tomorrow, we hate not knowing whether or not that person is going to call us back about the promotion, we hate not knowing whether or not our favorite character ACTUALLY died in that cliff hanger season finale, so it stands to reason that not knowing what our pain will be like tomorrow weighs pretty heavily on our minds.  Some days are worse than others, and it’s hard to make plans when you can’t be sure if you’ll feel up to it.  This can lead to social isolation, which of course can cause depression.  Sometimes, just the pain itself can cause depression.  Being in pain all the time tends to do that to people, as does not getting adequate sleep at night.  The struggle of wondering how long you can keep it up, working 40 hours a week and maintaining yourself and your home, gets pretty difficult after a while, too.  There is also the matter of people believing and supporting you.  Nobody expects a happy, healthy, athletic child to suddenly start lying about pain, or imagining pains that don’t really exist.  This is different for adults.  When an adult suddenly starts needing to take time off of work for doctors appointments, and because they are in too much pain to work, not following some sort of accident, there is a lot of “Why would this start now? You are just trying to get out of being an adult” and “It’s probably just stress, you need therapy.”  Even following an accident sometimes, after a few months, people start telling adults to “suck it up” and get back to work.  “Everyone has struggles, get over it.”  That is not necessarily healthy advice.

Individual differences are very important to remember.

            Most of us know at least four people, right?  They are all different.  They handle stress differently, some are positive, some are negative, some are pretty indifferent to everything, and if we all go through an experience together, we all handle it differently.  Maybe we lose someone that we all cared about.  One of us seems the same as always, one of us keeps talking about it being “part of a plan”, or how they are just glad that the person is no longer in pain or something.  One of us can’t even speak because they are so upset, but everyone loved that person the same.  People just handle things differently.  Is it a difference in chemicals and physiological makeup of our brains?  Is it a difference in how we were raised?  It is probably a little bit of everything.  Either way, this is just as applicable to chronic pain.  For the sake of this making sense and being easier to understand, we are going to assume everyone I’m talking about with chronic pain is around an average of a 6 on the pain scale, and they all developed the pain in early adulthood.  Eleanor has always been a bright and positive person.  When her pain started, she stayed that way, going from doctor to doctor, but over time her medical funds were exhausted, and she still had no “cure.”  Eleanor doesn’t get depressed, but she does decide to give up.  She cannot afford to deal with it anymore, she cannot do any of the things she wanted with her life, and she does not understand why this would happen to someone like her.  Her health insurance is only willing to help her on so much, so when it comes time to start trying all of the medications, some of them are just too expensive.  Now she is in pain all the time, and when applying for government disability checks, she fills it all out under the firm belief that she can no longer work, go to school, do leisurely activities, or leave the house unless she knows that they have motorized shopping carts where she is going.  Eleanor is approved for government assistance.  Linda has always been a pretty neutral person.  Nothing ever really seemed to make Linda feel incredibly sad or strongly overjoyed.  Linda has a good job with fantastic health insurance, and they allow her some time off when the pain starts to try and figure it out.  Upon finding out that it is chronic and lifelong, she goes through the process of trying every medication that might possibly work.  While doing this, she continues to work, but notices she is not able to work as many hours as she used to.  She applies for disability, but because she feels that she can still work some, is denied.  This is exactly why some people with the exact same conditions, in the same amount of pain for the same amount of time, manage to get disability, while others do not.  This is why we are all stuck wondering, all the time:

Am I doing enough?  Am I doing too much?

            My average pain level is a 7 without my medication.  With the meds, it’s a 4.  That is life altering, right?  But when I no longer had my medication, I didn’t stop everything I was doing.  I couldn’t.  Currently, I have two part-time jobs, I’m a full-time senior at UNT, I’m part of a research lab team at school, and I somehow accidentally ended up in a class where I have to do volunteer work with disabled people.  I feel like taking care of myself every day should count, but apparently not.  I cannot afford to quit either of my jobs.  When I finish my bachelors, I will be qualified for some better jobs, so I can’t really quit school either, or I will just stay stuck in this loop.  If I ever want to get into grad school, which would make it easier for me to get an even better job so I do want that, then I need this research team crap.  I have been barely getting through each day this year.  I keep getting really behind on house work, and home work.  It’s a lot to do, especially when I haven’t had many nights of quality sleep because of the pain.  Here is the thing, though.  There are people in as much pain as I am, there are people with more debilitating conditions than mine, and they are doing more.  Maybe not even more, but they are doing the same amount as I am and doing it way better.  There are also people in as much pain as me, or less, and they are doing far less than I am.  I look at the people doing more, and those people doing less look at me, and we all ask the same question: Am I doing enough?  Am I trying hard enough?  I literally feel like I am doing as much as I possibly can, so it is really hard to see people doing better than me who feel as crappy as I do physically.  Then again, I look at people who are doing way less, people like Eleanor collecting their disability checks, and it’s hard not to wonder if I’m just doing too much.  Am I pushing myself too hard?  Do I even need to do all of this? 

This whole piece has made it pretty clear that there are a million differences in everyone’s lives that come into play.  Yes, some people are going to do better than you.  Some people are going to have it easier than you.  But only you know how much you can handle.  Keep doing your best, keep working your hardest.  As long as you know your limits and listen to yourself, body and mind, you are doing exactly as much as you are supposed to.  You are doing enough.

Here is a photo of me listening to my textbook at work.  

Fibromyalgia: Things I've Tried and My Brief History

This is just a list of the things I can remember that I have tried for fibromyalgia since it started in 2001, and a brief history.  Please keep in mind, Fibromyalgia is different for everyone.  Some of these things help for some people, or at least that's what I've heard.  If you have a food intolerance or vitamin deficiency, then a certain diet will almost definitely help the pain at least a little bit.  

Diets (none ever helped): Gluten free, meat free, whole grain, dairy free, sugar free, caffeine free, paleo, Atkins, low sodium, Weight Watchers, tomato-free (three full years), all natural organic

Vitamin Supplements (none ever helped): Multivitamins, fish oil, calcium, b-12, vitamin D, iron

Exercises (all made the pain worse): Yoga, Pilates, Water aerobics, tai chi, meditation, ballet

Medications: Tylenol 3 (helped a tiny bit, very briefly), Tramadol (helped a tiny bit, very briefly) Lyrica (did not help the pain), Savella (did not help the pain), Cymbalta (did not help the pain), Fentanyl (absolutely nothing), Butrans (helped the pain a lot, still have pain though, and very expensive), Norco (helps the pain just enough to be significant), various antidepressants (never help the pain)

Other: Salt Baths (helps a tiny bit while I’m actually in it), Massages (Help in a normal people way, not a fibro way? lol), Plexus (did nothing), Juice Plus (did nothing), Weight Gain (from 118 to 145 over the span on a few years, made no difference in pain), Weight Loss (back down to 123, made no difference in pain), Physical Therapy (did not help, occasionally just hurt more), Ice (never helps), Heat (sometimes helps a tiny bit)

History:

Born with turned-in feet, slept in braces as an infant.  I was never an incredibly energetic kid, I appreciated bedtime.  That’s not to say I wasn’t active, just not energetic.  Always had pains, thought they were growing pains.  Started ballet when I was 3.  The pains got really bad in one ankle when I was 11, then moved to the opposite shoulder as well. Saw a few doctors, went to physical therapy which did not help.  Had to quit dance when I was 12 because the pain had gotten so bad.  First diagnosed with fibromyalgia at Scottish Rite when I was 13, but it was “unofficial” because I was “too young” to diagnose for sure.  Saw a million doctors.  Married at 18 and moved to North Carolina.  Started getting migraines, prescribed daily Propranolol for the migraines which prevents me from getting them almost entirely.  Also diagnosed with Endometriosis after diagnostic laparoscopy in October 2009, consistent birth control (Yaz, skip placebos, immediately start next pack) helps a lot.  Re-diagnosed with fibromyalgia in North Carolina in 2011.  Moved back to Texas in 2013. Continued working out as regularly as I possibly could, which was less and less over time, until finally in 2015 the pain got so bad I could not exercise at all anymore, beyond everyday things (cleaning, grocery shopping, etc.).  My primary doctor was treating me with Norco, wasn’t helping enough, switched to Butrans.  Literally life changingly helpful, went from a 7-8 on the pain scale most days to 4-6.  Haven't been below a 4 in at least 7 years.

Why am I still pushing awareness?

Anyone who knows me, and has known me for a while, knows a lot about fibromyalgia at this point.  Because of this, I've had people ask me "why do you still push awareness?  Everyone already knows."  But they don't.  It's become so normalized in the lives of people close to me, that they forget that this isn't the case for a large portion of people.  I push awareness because people with chronic pain are still believed to be 50% more likely to commit suicide than the general population.  I push awareness because I still meet people ALL THE TIME who hear me mention it, see it written on my t-shirt, etc. and look like they've just heard a foreign word, and they ask me what it means.  I push awareness because there are still people out there, men and women, children even, who feel like they have nobody to talk to because nobody believes them, or nobody cares anymore, everyone is just tired of hearing them complain, when they aren't just complaining, they're legitimately asking "how do I survive an entire life like this?"  There are still people who think fibromyalgia is something made up by lazy people, old people, obese people, or mentally ill to explain away their aches and pains and get them out of doing things.  There still are very few studies being done on how to fix it, where it starts, the long term physiological/psychological effects of chronic pain.  If in my lifetime, somehow, all of this changes, I will stop pushing awareness, but for now, I push awareness because we still need it.

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.