"They don't understand that we smile even when we are in pain" - Fibromyalgia

                                               

A little more than a year ago I was diagnosed with Fibromyalgia. I wasn't overly surprised since I had been feeling less than good for a long time. The feeling when the doctor told me was very similar to the feeling I got when I was told there was no heartbeat when I was pregnant and when I was told I will never have more children. The words were heavy and light in the same moment as a piece of my heart shattered. The words changed me, my life, my world.

That same day a lot of thoughts, memories, and questions flew through my mind. I sat on my bedside and felt betrayed by my body, betrayed by time and betrayed by life. I will never be cured, at least not as things are now. I might go into remission, some do, but the illness will still be there.

When I went to bed that night my childhood came back to me. How I was told I was a weakling. How I was told I always complained. How I was told, "You always have pain somewhere." But not once did anyone react or try to figure out why I always had pain or why I could sleep and sleep and sleep.

Sleep is still my best friend. On bad days, when the pain makes me cry, when it is hard for me to walk up the stairs and when my clothes hurt on my body. On those days I go to bed at 6:30 and I can easily sleep for twelve hours.

It has been a learning process for me this last year. I have learned to pace myself; that I can't do everything I want. Heck, I can't do everything I should do either. Because some days I need all my strength just to work and be a mother. I don't make any phone calls, I don't leave the house if I don't absolutely have to and I will go to bed before the sun sets.

I eat healthy. I don't eat gluten, I eat mostly organic. I eat a lot of raw food. I try to stay away from dairy, sugar, processed foods and nightshades (potatoes, tomatoes, eggplants, peppers). My blood pressure is 110/70. My cholesterol is very, very low. I am basically very healthy... And I do exercise.

I have learned that sometimes exercise helps and sometimes it makes it much, much worse.  But it isn't  the pain that stops me from exercising it is the rest of my symptoms.

You see I always have pain. Everyday! I wake up with pain. I live with pain. I go to sleep with pain. I work, play, laugh and love in pain. If I wake up without pain I notice but most of the time I don't notice the pain anymore. It simply sits in my body at all times. The other symptoms come and go.

Here is a list of them:

Fatigue - this isn't regular tiredness. This is "I have to sit down or I will puke" tiredness.

Dizziness - feels like a slight motion sickness at times and sometimes as if I am missing a step and will fall over.

Nausea - similar to morning sickness actually but it can last for days at an end.

Tinnitus /sound distortion - when it is really bad I have to cover my ears because the sounds vibrate through my body and make me nauseous.

Raynaud's syndrome - it basically means I have horrible blood circulation in fingers and toes and have to wear gloves at 60-degree weather and hand-warmers in the winter or my hands will get painful red spots and swell up.

Stomach aches - and these are so bad I can hardly walk when they hit.

Muscle spasm - my muscles tense up and turn up my pain with about 100%.


Then I have the smaller things like; heartburn, post-nasal drip, the sensation of water dripping down my legs or bugs crawling up my leg, headaches, confusion and mood swings.

If you have made it all the way down here, you might wonder why I am writing this. I am not looking for pity but I want to tell you that I am not the only one.

We are many, more than you can imagine. And most of us never complain. We simply bite down hard and live with all of it. Sometimes it is hard and I put my hood up and look at the ground because I can feel how my pain shows in my eyes. Some days are good and those days are glorious. The joy I feel on good days is hard for most people to understand. On good days my heart explodes and I shine. On bad days I survive. Or as my friend and I say: "they don't understand that we smile even when we are in pain.

If you have anyone in your life that suffers, in any way, please listen to them. Reach out a hand. Help them. Living with pain, physical and emotional can bring down the strongest and bravest.

And we are all strong and brave.
That is the reason we are still here.