What the Scariest Part of Chronic Illness Feels Like to Me

The scariest part of suffering from chronic illness and chronic pain isn’t on my worst days. It’s not when fibromyalgia has me strongly in its grip, and when my neck, head and back ache. It’s not when I hurt so badly that I don’t want to move and my brain is lost in a deep fog.

The scariest part is when I feel human again. It’s when the fibromyalgia flare let’s go and my head starts to clear. The fear comes when my mind and body want to start doing things again; when I am capable of doing physical things that I could not do a mere week ago.

Fibromyalgia hit me hard over last summer, and it was unrelenting for months on end. It was only at the start of the year that I felt like I could grab hold of life again. I was desperate to strengthen my body, and to lose the more than 30 pounds that fibromyalgia packed on to my body in less than seven months.

Don’t get me wrong, there is still pain and fatigue. Degenerative disc disease has taken it’s toll, especially on my neck and my lower back. I still regularly wake up with headaches, and my back and neck still hurt. I need my pains meds and muscle relaxer, but without the full weight of fibromyalgia dragging me down the meds help me do more. I have been able to walk more regularly, and with less pain and stiffness. I have been able to ride my exercise bike and I am able to increase the intensity. My hands and feet don’t hurt and feel stiff, and I don’t wake up day feeling like I’ve been hit by a Mack truck.

I have so much time to make up for. I need to clean up all the clutter that has accumulated in my house and in my head, while I was in too much pain and agony to do anything about it. It’s hard not to push myself too far, but I don’t really know what too far is. The thing is, I can push, and sometimes it feels really good. It’s nice to break a sweat from riding my exercise bike, instead of from taking a shower.
The scary part is that I don’t know how much time I might have. Fibromyalgia lurks in the shadows, and I know it will come again.

When will the moment come that the familiar flu-like ache starts creeping up my body? It’s feels like I’ve been living in the dark and someone switched on the sun. So while the suns shines I will push the fear away, and I will do what I can while I feel like I’m human again.