It’s not a Super Power.

The moment my head hits the pillow I'm asleep. My husband hates it. First reason: I snore.. loudly. Second reason: he has borderline insomnia. So when we crawl in our big comfy bed and he wraps his loving arms around me ready to get a little closer, chances are I'm already out. This shouldn't be a problem. Thousands of people wish they could have this “super power” including my husband. What those thousands don't know is that this is no super power. While I might fall asleep quickly, it is far from a comfortable sleep.

At some point in the night my restless legs will wake me. It starts with a tightness in my leg. It's a feeling of dread that only those with restless legs can begin to understand! The tightness starts to move like shorts in  electric wiring. I shake my legs to relieve the tension but this doesn't cause relief. I have some “tools” I use that help. A flip-a-zoo my husband gifted me and a message ball. On some nights I am lucky and can place the message ball on the meaty part of the hip and lay on it. It hurts like hell but eventually the electricity and tightness abate, and I can sleep. Other nights my flip-a-zoo is used as a support pillow for my quadriceps, the front thigh muscles, and my adductor muscles on the inside of my thigh. On these nights I spend my time tossing and turning, adjusting the flip-a-zoo and chasing the pain.

My restless legs aren't the only thing that wakes me from my slumber. Most of the time my shoulders are burning coals of hot fire! I can't lay on my lefts side, which is my favorite way to sleep, because the pressure it puts on my shoulder is insane. Rolling on my right side impacts my Ulnar nerve a.k.a the funny bone, and we all know that's not funny. If by chance I find a way to sleep through the night, there will be a fifty-fifty chance I wake with a migraine. A head splitting nausea inducing, eye popping migraine! A “hurry up and take a couple Excedrin and go back to bed” type of migraine.

By the time the moon goes down and the sky is a grayish blue, before the sun starts to wake, I've spent the entire night uncomfortable but I am able to fall asleep.With a three hour sleep average I start my day. The restless leg pain has left my bottom half stiff, my shoulders are aching, my neck needs cracking, and my head is pounding! But I have children, a husband, pets, and a job. No time to bitch and complain.

I manage to juggle my responsibilities with a certain savoir faire. It's hard to hide the amount of pain I am in. Some days are harder than others. Some migraines keep me in bed with the windows shut tight and my flip-a-zoo under my head. Sometimes my shoulders hurt so bad, driving is impossible. I can barely lift my arms to hug my children. Other days are fine. The aches are not so bad. They are more like irritations. Nothing that a couple ibuprofen’s can’t take away.    The days that I am aching, and the days that I'm okay are nothing compared to the fog that blinds me.

Sometimes I am forgetful for days, but it can last for weeks! During this fog, I can't remember anything, and I make simple mistakes. I am cranky, tired, and frustrated at myself, but end up taking it out on everyone around me. It's not because I'm mad at them. It's me I'm really mad at. These are the days I hate the most.

This is what living with fibromyalgia looks and feels like to me. It's not a pretty picture, and it's harder to explain. I can't find time to do a lot of things that “normal people” do, because all of the sudden it's 9pm and I couldn't tell you what happened to the last four hours! It feels like I am missing out on so much in life. That I can't live it to the fullest breaks my heart. I feel like I let my family down when I can't get my shit together. There are times I miss out on work and I think “what the hell am I doing? Why am I pretending I can do this? I should quit and save them from having to fire me.”

Fibromyalgia is more than a little bit of pain. It's never knowing where you stand. It's pretending that your okay when really you're a mess! It's a dirty house and dirty clothes because you're just too tired. It's sleeping in, missing work, forgetfulness, and low self esteem. Fibromyalgia is lying to everyone. It's saying “yeah I'm fine.” instead of, “No I'm in pain.” because if you tell them that again they are going to think you're crazy! Nobody really feels sick every single day! And if I am in so much pain why can't the Doctors help? Fibromyalgia is knowing there isn't a reason for all of this, so you stop going to see the doctor all together. It's hot baths and heating pads. It's needing to exercise and stretch, but not being able to feel the benefits. It's debating taking antidepressants and opioids because they might help (but you know they won't. You've tried them before).

Living with an invisible disease is hard on your body, your mind, and your soul. It's about living life as well as you can and doing as much as you can. It's having good days, bad days, and days you won't remember at all! It's getting up no matter how bad you feel and not giving in to the pain. It's not listening to the negative voice inside your head telling you lies.

It's all these things but it's also, knowing your strengths and weaknesses. It's not pushing yourself too hard. It's knowing when to say “no, I'm hurting” without feeling any shame. It's loving yourself enough to allow yourself to have some bad days.

To me, Fibromyalgia is being able to fall asleep quickly and praying to God I get to sleep comfortably throughout the night.