Telling people I live with a chronic pain condition isn't something I enjoy shouting from the rooftops. Mostly I hate the looks of pity people give me, or the exclamations of "But you're so young!"(I know, thanks for reminding me...) I'm also still very afraid that if I say something about having a pre-existing condition, that I won't be considered for a job or I will be fired from one. Though it is illegal, it still happens. "She won't be able to handle it" or "Her health insurance is so expensive" are phrases that come to mind. I also hate when people diminish my pain. When others tell me about their unusual amount of pain or exhaustion, I tell them I can relate, as a way of saying I understand, I know it hurts. But the responses I get are usually "But you're used to the pain, I'm not." No, actually, I never get used to it. I have just learned to live with it. That doesn't make may pain and exhaustion any less uncomfortable.

A rare day when I actually wore makeup and painted my nails for no reason at all.

But I'm at a point in my life now where the disconnect between how people view me and how I view myself is too great to bear. Advocacy for myself and fellow chronic pain sufferers, or "spoonies" as we call ourselves (read the spoon theory here), is the only way to bridge the divide. Some people see me as a liability, some as only half of a person, some think I should ignore my condition and it will magically disappear, while others put pressure on me to do as much as I can and live life as much like a normal, non-chronic pain suffering person would.

But I'm none of those things. I'm not a liability, but a person who is able to see things from another perspective. I'm a full human being wanting to live a happy and as full a life as I can--just like anyone else in this world. But I am not a normal, healthy person and I most certainly cannot just pretend this chronic pain condition doesn't exist. It's constantly there, reminding me it does exist with burning pain, stabbing pain and the cracking of my joints every time I move. And not caring for myself and that condition, only serves to make the pain worse.

Over the years, I have learned my limitations and I respect them. Though that doesn't mean sometimes I won't overdo it; I know full well that I will reap the consequences later. Balancing my life is, as with anyone, a life-long learning experience. My consequences are both physical and emotional pain.

I began noticing symptoms of Fibromyalgia in my preteen years and I wasn't diagnosed until I was 18. I underwent multiple blood tests to no avail. My doctor tried a high calcium regimen but that did not help. I was always exhausted but I woke up dozens of times a night. My mom was worried about me, which is saying something. She was the kind of mom that sent you to school after having you take some cold medicine, that 101 degree fever be damned. My doctor referred me to an orthopedic specialist. She noticed that my joints and muscles were more out of balanced than usual for a teenager, but that wasn't causing my pain, probably only worsening it. So she sent me to a rheumatologist. After listening to my symptoms and doing what is called a "tender point examination," I was diagnosed with Fibromyalgia (FMS), a body-wide chronic pain condition that effects every system in my body.

It was only about 35 years ago that people thought FMS patients were just crazy and sent them to mental institutions. There was no X-ray or blood test that said anything was wrong with them, so they must be crazy, right? To this day, still no one knows what causes FMS, though there are a dozen theories and no real treatment for it. Patients are usually prescribed anti-depressants, sleeping pills, nerve inhibitors, muscle relaxants, and when it's really bad, opioids. Doctors usually write the prescription, pat you on the back and send you on your way with a cheery "Good luck!"  At least we are no longer locked up in mental wards, though there are still plenty of people out there who think it's a fake disorder.

That is probably thanks to the fact that it is considered an invisible illness. To look at me, you wouldn't think I'm sick. I don't have any physical show of illness and I smile through my pain. Most people when they ask "How are you doing?" don't really want to hear how you truly are doing, it's more of a way to say hello. So I often smile and tell people I'm okay or I'm hanging in there. On the inside, I'm actually screaming in pain. And who wants to listen to you complain about all your pain over and over again anyway? (But I just want my friends to know, that when I ask you how you are, I genuinely want to know how you are doing.)

I may be smiling, but don't let that fool you. I was in a lot of pain the day I took this photo.

For most, treating FMS is a battle you fight on your own. You have to take initiative to do research and try things. Some have found relief in massage and yoga, others acupuncture or a change in diet. Some Fibromyalgics are in so much pain that they are bed ridden. No two FMS patients have the exact same symptoms so different treatments work for different people. I, thankfully, am not bed-ridden. However, I am part of the weird group of FMS patients (about 2% of the FMS population) that feels pain more often in my joints than in my muscles. And no medication I've tried seems to work and I cannot afford yoga classes or massages.

But any Fibromyalgic would tell you that FMS is so much more than chronic pain. Rather than listing off a bunch of symptoms, I'll take you through one of my days. As a healthy and normal person, I don't want you to read this and pity me. I just want you to read it and understand it. If you are a fellow spoonie, take comfort in knowing you are not alone in your suffering.

In the morning, I wake up to the sound of either my alarm or my dogs whining to go out. I pry open my eyes, squinting at painful sunlight that literally makes my eyeballs hurt. My mouth is dry and I can't speak. I lay in bed for a minute, allowing myself to acclimate to all the sensory information overloading my brain: smells, sounds, light--all of it is overwhelming. I clumsily silence my alarm if it is ringing. When I sit up, nearly every joint in my spine cracks. My muscles are all stiff and sore, despite sleeping on a memory foam mattress. I feel like I've been run over by a train. My brain is moving at slower than a snail's pace. I usually lose my balance trying to stand up and trip around my own feet going to the bathroom. I'm still working out the kinks and bending my knees and ankles is almost nonexistent at this point as I walk awkwardly to the bathroom.

I don't turn on the light in the bathroom, the light would be too much. When I sit down on the toilet, both of my knees give a loud pop and pain shoots up through my thighs to my hips and down my calves to my ankles. When I stand back up, I lose my balance a bit again and my muscles scream as they stretch.

No makeup and just some comfy clothes. My dogs bring me comfort when I need it most.

I walk to my bedroom door and let me and my dogs out of the room. Light from my loft window assaults me when I open the door. I'm still walking funny as my muscles and joints are still extremely stiff. I begin to go down the stairs. Each stair causes my ankles to pop. There are 15 steps. The dogs are patiently waiting at the sliding glass door for me to let them out, they make it down the stairs long before I do. During the summer months, opening the door doesn't cause discomfort. But during the colder months, opening the door means exposing myself to the cold and cold causes my joints to hurt more. Every joint in my body burns with pain when that cold blast hits me. One of my dogs is still young and learning so getting him to come in when I call is still an issue sometimes. That means I have to go outside to corral him. Then I need to bend over and put on my boots. My teeth clench with the pain as I do this.

Stepping out into the cold air is even worse, even if it is only minimally cold. Breathing it in hurts. Moving in it hurts. Speaking to my dog before I've had anything to drink hurts--it feels like my vocal chords are on fire when I speak. I shoo him inside after finally getting his attention. Once the door is closed, I'm only given small relief. It takes some time to work the cold out of my bones. I take off my boots and head to the coffee machine, joints popping and muscles screaming as I go.

No makeup but I felt well enough to trek up the hill on my Oma's property this day, even though it was a bit windy and a storm was moving in.

I reach up for a coffee mug and my shoulder catches. The pain causes me to gasp. I start making coffee. Shaking the coffee creamer causes pain in my elbow and shoulder. Reaching for the dogs morning Greenie causes the same pain as reaching for a coffee mug. Bending my arm to place the bones in my pocket causes my elbow to pop. I take the Greenies and my coffee upstairs. Fifteen steps, 15 ankle pops. Any small amount of exertion causes air hunger in Fibromyalgics. You can be in the best shape of your life, but you'll still sound like an out of shape rookie after your first marathon attempt. I huff and puff like that when I reach the top of the stairs. Sometimes I get a little dizzy and disoriented from it. I have to stop when I reach the top before I can walk into my room. When I get to my bed, I reach into my pocket to get the Greenie bones and my elbow pops again. I set down my coffee mug and my muscles ache. I give my dogs their morning treat and my muscles scream from stretching. I sit down on my bed again and my knees pop.

At this point, all of my joints are on fire and my muscles ache and burn. I reach for my remote and turn on the news. My elbow pops, knuckles pop. Lifting my coffee mug hurts, my shoulder occasionally pops. Swallowing hurts. But the dryness if finally leaving my mouth. It doesn't hurt as much to talk to my dogs now. I spend the morning sipping coffee and listening to the news and using my phone to look at emails and social media. I take my time because I hurt so much. How much I push myself in the morning sets up the rest of my day and how much pain I will be in later. It's important to take it easy. During this time, I deal with my allergies that seem to be year-round now. I blow my nose and cough from drainage, both of which are painful for my chest muscles.

When I do get up for the day, I head to my closet, joints still popping and muscles still aching. I pick something out with comfort in mind. Is my Allodynia flaring today? If it is I pick loose jogging or sweat pants and a loose shirt so that the seams don't bother me. If not, yoga pants and a basic T-shirt. On days when my Allodynia is particularly bad, just the weight of clothing on my skin is severely painful. Those days are spent in bed, crying in pain, because what else can I do?  I've even had to switch to bras without underwire. They don't hold me up as well but the pain from the underwire hitting tender points right under my breasts is too painful. After 30 minutes of wearing an underwire bra, it feels like someone punched me in the chest twice. I usually forgo underwear at home. The close fitting fabric and seams can rub and cause pain.

Comfort and warmth. Another rare selfie with one of my dogs. I've gained a lot of weight and hate photos of myself.

In the late morning I finally get hungry. Eating too early makes my stomach get upset. I make myself something simple-- an egg sandwich, a smoothie or yogurt and granola. When I'm cold I make oatmeal. When I'm exhausted, a bowl of cereal will suffice. Every movement causes pain. Those 15 steps aren't as bad the second time I take them. My ankles pop every couple of steps now. Chewing my food is painful, swallowing it is just as painful. I have to sit for a few minutes after I'm done. Getting up causes pain, walking causes pain, bending over to put my dishes in the dishwasher causes pain.

I work from home and make my own hours. But I like to get started in the morning. Going to work just means going up the stairs. Again 15 steps and air hunger at the top that makes me dizzy. I go to brush my teeth before I start work and the back and forth movement causes pain. The taste of the toothpaste is overwhelming most days. It's like my senses are on fire. On rare occasions it causes my tongue to twitch.

Sometimes I'm at the computer doing contract social media work or creating graphics and updating websites for my music groups. Sometimes I'm at my scrapping counter. Either way, I'm usually in one position for a long period of time. Typing causes pain in my hands, fighting the stiffness in my knuckles. A searing pain on my side just under my armpit and around my back to my spine flares every few minutes. I suffer from constant lower back pain. Every time I shift my position, my joints pop when I bend them. When I work standing at my craft desk, my feet and calves hurt. Bending joints causes them to pop. Twisting caps open hurts my wrist and fingers. Just think of me as an old lady. Opening anything is painful and difficult.

By lunchtime I'm stiff and sore. Making my lunch causes the same pains as making breakfast did. Reaching, stretching, bending, it all causes more pain. It's just pain building on top of more pain on top of more pain all day long. I take it easy when eating lunch. Again, chewing and swallowing my food causes pain. Getting my dishes to the dishwasher causes more pain.

If I haven't finished working, I go back upstairs. I reach the top and have to stop to catch my breath again. My chest muscles and knees are screaming. It feels like they are on fire. I work through the pain and the popping and cracking. Other days I run errands in the afternoon. The extra walking causes pain, especially in my hips. Once a week I have a flute quartet rehearsal in the late afternoon. Playing the flute causes a whole other set of pain issues, but more on that later.

It was a lazy weekend day for my sister, mom and I when we suddenly decided to go check on the process of my mom's new house being built. I'm happy when my sister "slums it" with me. Then I don't feel so guilty for wearing jogging pants and a T-shirt. (Thank you to my brother-in-law for taking this photo!)

At this point, I've spent the day alone with my dogs for the most part. Close to the time my mom comes home I do a mood check. Do I have control of my emotions today? As a Fibromyalgic, my body can't regulate my hormones very well and that can cause severe mood swings. A person waving hi to me across the street can set me off but right now, I'm on birth control and it does a wonderful job regulating my hormones. But on my period weeks, I have to watch it. If my mood is out of control, I spend 30 minutes bringing it into check, because once I'm set off, I can't control it and I know it, which only makes it worse.

When my mom gets home in the evening, she's pretty exhausted from work. On nights I don't have a music rehearsal, we make dinner or eat leftovers. We spend the night chatting, watching the news and sitting and relaxing. We both need it at this point.

On Monday and Tuesday nights, I have rehearsals for two music groups I'm in. I change into more suitable clothes for all my rehearsals. I don't want to show up looking like a slob so I put on a nice shirt and a pair of stretchy jeans. I sometimes put on jewelry. Necklaces and bracelets are the easiest. Sometimes my fingers are too swollen for rings. I only wear earrings on special occasions like for concerts. They bother my ears too much otherwise. The only piece of jewelry I wear all the time is my nose ring. It is the smallest gauge possible to keep it from irritating my skin. I wear makeup to concerts and occasionally out when I'm having a better day. But most days, I forgo the extra work.

Each rehearsal lasts at least two hours. Monday nights aren't as bad. I'm tired by the time the two hour rehearsal is done and I'm in lots of pain. My spine feels like it's been through a trash compactor several times. My hands are swollen and painful and my knuckles are bruised.  I'm stiff from sitting for so long.  But I still have to walk to my car, usually in the cold, and still drive home. On Tuesdays, I'm still dealing with the pain from Monday's rehearsal. This is flute choir and for this group, I play bass flute. It is large and heavy and my hands are small and my fingers short. Playing bass flute is more painful than playing concert flue and piccolo like I do on Mondays. By the end of the Tuesday night rehearsal, I'm thoroughly exhausted and in a ton of pain. But again, I still have to walk to my car and drive home.

My friend, Anita, and I playing a piccolo duet with our flute choir at our "Divas" concert.  I really enjoyed playing this concert. Being able to be with friends and just have fun is a highlight for me and why I still play flute even though it is painful to do so.  (Just in case you were wondering, that giant vertical flute you see back there is a sub contrabass flute.)

I don't like to eat dinner before I play my flute. I have a harder time breathing and filling up my lungs as much as I need on a full stomach. When I get home on Monday and Tuesdays, I make myself something to eat. I warm up leftovers or make a sandwich. Again, the reaching, stretching and bending is all very painful. My hands are stiff, sore and swollen. I'm clumsy and I have to move slow, but I'm so exhausted and I just want to get something to eat and go to bed.

Wednesday or Thursday I have that afternoon flute quartet rehearsal, also another two hours. I'm still sore and hurting from Monday and Tuesday. The pain builds up over the week. By Friday, I generally need a nap midday to recharge. I feel guilty taking it even though I know I need it. I'm usually depressed by Friday too, having dealt with so much pain day-in-and-day-out. The depression increases when I take the time I need to recharge because of the guilt I feel. I'm still working on not feeling guilty when doing self-care. It's a process.

By bedtime, I'm absolutely exhausted and in a world of pain. I have to let the dogs out one last time and that blast of cold air makes me stiff and the pain is like fire coursing through me. Then I have to take those 15 steps upstairs and they seem like an insurmountable mountain at this point. But I do it, breathing like a maniac at the top, feeling dizzy again. I stumble to my bedroom and put my drink on my nightstand, joints popping the whole way. I brush my teeth knowing that it will cause more pain and that the taste of the toothpaste burns and makes stars pop in front of my eyes.  I take showers at night to help relax my muscles and calm my nerves and so I don't have to dry my hair because that is just one more thing to do that exhausts me. I'll sleep on it wet instead. Then I stumble to bed to take my meds out of my nightstand. My top drawer is a bit stiff and I have to yank it harder, my elbow pops. Twisting open my medicine caps causes pain in my wrists and hand. I have issues grabbing the tiny pills. I take out the three I need then place them in my hand and swallow all of them at once with a swig of water. They are all small but the swallowing still causes pain. I blow my nose and my chest aches. I shake my allergy spray and my shoulder catches and causes searing pain. I spray the nasal mist into my nose and it burns. The taste is metallic and overwhelming when it hits the back of my tongue, it makes me gag. But without it, my allergies are horrible.

Finding a comfortable position to sleep in is a task in and of itself. I toss and turn for hours. I'm sensitive to temperature and when I was younger, my room had to be like a sauna in order for me to be warm enough to sleep. Now that I'm older, I can't get too hot when I sleep or it causes me to toss and turn more. Perhaps it's age or maybe it's just a better insulated and newer house--either way, it's a battle every night. On average, it takes me 3 hours to fall asleep, despite how exhausted I am. I have sleeping pills but don't take them often. I'm afraid I'll become dependent on them. I have sleeping disorders like most Fibromyalgics. When my brain gets to that last stage of sleep, deep sleep, it wakes up. Sometimes I fully wake up, but I'm so used to it now my brain just kicks me back to the first stage of sleep. I spend the whole night attempting to fall into deep sleep. It's exhausting. Not having that last stage of sleep is what causes my immune system to be depressed. In that last stage of sleep, your immune system stops healing your body and heals itself instead. My immune system never really gets much of a chance to do that. Thanks to this weird quirk, FMS was finally classified as an autoimmune disorder.

Fibromyalgia is also affected by season changes and weather pattern changes. Every change causes me to feel more pain. And then I'm also sick half of the year. When I'm sick, I'm in a lot more pain. I'm also more exhausted. Sometimes I can work through it, other times I need a nap, but when it's really bad, I spend the day in bed, crying in pain. My allergies are year round but flare up even worse when everyone else's allergies decide to show up. I'm prone to sinus infections which turn into bronchitis. Playing flute has made my diaphragm strong so when I cough, it's a strong cough. Continual coughing rips my throat up and then my lungs. I've spit up blood from both so many times it's insane. I have scar tissue on my lungs from it. Taking all those allergy pills and cold meds drys me up too. I get nosebleeds often.

Me, my sister and brother-in-law with my Oma (grandmother) at her last Christmas. Holidays are special. I just enjoy the moment and my pain lessens from all the happiness and love.

I'm prone to migraines. The more exhausted and in pain I am, the more likely I am to get a migraine. Excedrine Migraine is the only medicine that helps. But it thins your blood so when I get nosebleeds, they are bloody and long. The longest one I had was 40 minutes. The blood was pouring out of my nose. I gave up using tissues and just hung my head over the sink for a good portion of those 40 minutes.

When the "Fibro Fog" is bad, my brain moves like molasses. It can be as simple as forgetting a word and as bad as forgetting what the shampoo is for while in the shower. I've driven to the end of my street and forgotten where I'm going or how to get to where I'm going. One time I assembled a chicken casserole to cook in the over, then walked out of the kitchen to the laundry room and opened the dryer. I stood there for five minutes wondering why it didn't look quite right and wondering what happened to my oven rack when I realized that was not the oven. Sometimes I also have problems controlling the movements of my mouth and my words come out jumbled and mushy.

I have weight issues and a digestive system that is always out of wack. I am prone to panic and anxiety attacks, my nails are brittle, my hair falls out more than it should and my vision acuity changes depending on the lighting. Under harsh lights like fluorescents, my vision is blurry. Outside in the sunlight I can see clearly for miles and miles. Switching from near focus to far focus is a slow process for my eyes. Sometimes it takes several minutes to accommodate and other times it takes nearly an hour. The muscles that controls my eye movement is one of the most painful parts of my body. I find myself turning my whole head or body to look at things instead of just moving my eyes.

I think I often keep myself busy as a way to focus my brain on things other than the pain and exhaustion of FMS. In quiet moments, I find myself tuning in to my body and realizing just how much pain I'm in and it can be overwhelming. I get a bit of a glassy look to my eyes. It's good to do a check-in with yourself, yes, but I always have to steel myself for these moments. If it catches me off guard it's almost too much to take in.

Having Fibromyalgia is a daily, delicate balance, like walking a tight rope. I'm constantly weighing my options, thinking of the consequences. It has changed my life completely. I think it is one of the reasons I decided not to get my degree in Music and become a professional flute player. But it isn't all bad. I like to think it has made me stronger and more resilient. I also can tell three days in advance of everyone else in my family that the milk is starting to go bad thanks to my amplified senses, and that is kind of handy.

Three generations of women on my sister's wedding day. I was so busy doing things and enjoying the moment my pain went to the back burner of my brain. I live for these moments. It's a sort of non-medicinal relief. I also lost a lot of weight for this and it definitely helps not being so overweight.

But FMS isn't something I would wish on my worst enemy. I don't see a cure for it any time soon, nor any real treatment. I learned in college that the co-morbidity rate (the rate at which having one disorder makes it more likely you'll get another that will kill you prematurely) is 99 percent for FMS. For me, it's not a matter of if I get Lupus or some sort of cancer, it's when. I've had to come to terms with that and I easily made my peace with it. For my friends and family that know about that, I'm not sure they have come to terms with it as easily as I have.

For now, I choose to live in the moment. I want to drink in as many of those wonderfully delicious, happy moments that I can. I love food even though it hurts to eat and drink. I laugh even though it makes my chest feel like it's on fire and I want hugs even though someone squeezing me hurts. Because I want it all: the good, the bad and the painful.