When I Fell and Couldn't Get Back Up: Chronic Illness

How do I explain what's happening to me?

Last July (2014), I fell sick. And never recovered. How do I convey to you, the hell I'm going through?

I lay in bed most days, most hours and watch the world go by.... without me. How do I explain my grief?

Sometimes the pressure and pain and the heavy fatigue is so great that I stare off, listening to my heart pounding and the sound of my breathing, waiting for my last breath to take me away from it all. How do I put into words my despair?

This has changed me. It's changed my husband. Planning things is like trying to write on wet paper. There's a dry piece with Plan B on it. How do I explain my guilt?

I watch my husband come home from his stressful job to taking care of our 5 kids at home, cooking, cleaning.... things that were my job. I am so dependent on him. How do I explain this helplessness?

I'm fortunate to have found a doctor that believes me, even though when I tell him my concerns for worsening symptoms, his response is "unfortunately, this is part of the disease." No answers. Not enough research out there to tell me why I'm, all of the sudden, living in this hell when I was a healthy young woman, excited about turning 30. I'm trapped in a young body that is giving out like an elderly person. How do I say how lost and alone I feel?

I am also fortunate to have friends and family that will lay next to me when they know I can't come to them. Every time I look at my husband, I cry because my dad was right.... I have never felt more loved than I do right now. Those that take me seriously, when they are near me, I hear God whispering in my ear, "See? I haven't left you."  How can I begin to explain that kind of comfort?

But when people look at me, they don't always see a sick person. They hear me speak somewhat coherently and hear me lecture my kids, and flirt with my husband and laugh at jokes, assuming that I'm not sick. They say my 5 kids at home is the answer to my "tiredness." How do I even begin to rant about how offensive and suffocating that can be?

I've had to give up so many things. Things I can't physically or mentally do anymore. My kids watch me in disappointment, too young to be satisfied with my best efforts to care for and love them. I can only hope they will grow up someday, remembering all the times I still held them when they cried and understand that I tried my best to be there and maybe they'll excuse me and forgive the disease.   Injustice. It's like a thief, it has stolen a presence.

I have been diagnosed with SEID (systemic exertion intolerance disease, formerly known as Chronic Fatigue Syndrome) and Fibromyalgia. The most recent diagnosis is Hashimoto's (auto-immune) Disease. Everyone is unique in their symptoms, diagnosis cocktail, and finding their recoveries, that is if they ever do find it. No two are alike. But it's still good company to talk with someone that's going through hell similar to my own. Not a day goes by without thinking about my illness. It's like a chain that's always making my skin bleed, never allowing me even a full day to heal.

I can't even cry my eyes out without pain and pressure shooting through my head.



It is very hard to focus enough to write, so you won't be hearing as much from me here as often as I used to write. I've been put on pause, for the most part, until we can figure out a recovery plan that works for me, if there is one out there. If you know someone with "a chronic illness that you can't see", hug them gently and take them seriously. Talk with them. Respect the boundaries of their disease and help any way you can. Those are the characteristics of the most helpful, supportive people in my life right now.