Thursday, June 4, 2009


Clouds roll in.
Clouds dissipate.
They will return.
Right now, I have no doubt of that.

There is something I want to make clear. I look fine. I can smile and I can laugh. I can sound like a perfectly normal human being on the phone. I can put my makeup on and look like a million dollars. I can still pretend and walk like I don't have a care in the world. I can skillfully maneuver my way out of parties, shopping days, dinners, trips to the supermarket and the like. I have learned to put up with the label of flake, no show and "slug." Actually slug is the name I gave myself. When people ask what I do on my days off I smile and say, "I do nothing. I'm a slug." Then I tell them I have slug down to an art form. This discourages any further conversation on my pain. Why tell them? They wouldn't believe me anyway.

There is something to be said about smiling through the pain. I can be happy. Happy and healthy are two different things. Just because I sound fine doesn't mean that I don't spend most of my day in pain and exhaustion. What I have is variable. The symptoms vary from day to day and sometimes from minute to minute.

When you tell me that if I just get out and do things, or start moving and get out of bed; that doesn't make me feel better. A lot of times getting out and doing things can reduce me to tears before the end of the day. I cannot describe the sensation that I feel. It's like a spring tightening and then letting go. When I feel this in my legs I wish I had a baseball bat. A bat hitting my legs would feel a whole lot better than what I've got going on now.

I've made my bed with 600 thread count sheets, down comforters, tons of pillows and my lifesaver; the comfort u pillow. If you don't know what this is it's a pillow shaped like a giant horseshoe. It was actually formulated by a nurse who had fibromyalgia and suffered in pain. This pillow wraps around you so that your body actually floats your already painful trigger points don't get any more pressure on them than necessary. It is kind of expensive but well worth every penny. I've spared no expense to be able to climb into a bed that is a heavenly treat. It's imperative that the place I spend most of my time is comfortable.

Once the spasms hit it's time to take the medication otherwise sleep will be impossible and, of course, that exacerbates the pain. It's a roller coaster and you wish to God you could get off. It becomes your prayer late in the night. Please let me get off this roller coaster. Please.

Running, power walking, treadmills do not help me lose weight at this point in my life. All those things do is serve to put my butt back in bed for at least a couple of days. I don't like the 30 pounds that have suddenly appeared between my neck and my knees. Looking like a blimp definitely doesn't help my attitude. Did I tell you that it as well is in the toilet? I don't eat that much and now, unfortunately, all I want is chocolate and ice cream. Preferably together. As I've said before, I'm catagorizing ice cream into the medicinal catagory. Therefore, perfectly acceptable.

I used to pride myself on my intelligence. I could look at proforma's and spreadsheets and loved to read the fine print. Contracts were my special love. I could rip them apart and put together something to behold. Now it seems like someone smeared oil over my lenses. Everything looks fuzzy. I no longer have the patience or intelligence to read and retain what I've read. I read and re-read. I stare at what I've read and get the deer-in-the-headlight look and frantically search for a remnant of the former woman with the near photographic memory. What is this insidious disease that robs you of your intelligence and leaves a woman searching for the right words, forgetting where she put her keys, sitting in the car and wondering where I'm going and leaving food on the stove. Did you know that hard boiled eggs make interesting little projectiles when left on the stove? Cleaning tiny little pieces of egg off the ceiling is a tad tough, though.

Just when you think you've taken one step forward you find you've actually taken 3 steps back.

My mantra.
Baby steps.
Tiny baby steps.


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