Monday, May 13, 2013


When people say,
"I know how you feel"
"I get tired too"
Give them my shoes for awhile.

How does your day start out? If it's anything like mine you're hobbling to the kitchen feeling like the tin man in bad need of an oil can.

I'm on a search for caffeine.

I need coffee and as bad as it is I have a diet coke chaser. I've tried giving it up cold turkey but I don't like plain water. I will say that I've cut the diet cokes WAAAAY DOWN but first thing in the morning....well, so far it ain't happenin'.

Then I slug down the medications that start the day. I take my thyroid medication, supplements and pain medication. This will get me through until noon. Fibromyalgia combined with hypothyroidism and a dose of autoimmune thyroiditis keeps you feeling like you're running on empty.  Energy is at a minimum and you're just bone tired. 

Tired isn't the right word and I can't think of one that adequately describes it.

As time goes on my patience level with this "syndrome" has dropped to a new low. We went to Hawaii and the beach is the place where I find my peace. I usually don't like to sit around doing nothing but put me on a beach and I'm one happy camper. Going there and dealing with the plane trip and the headaches of travel was something new to me. By the time I got to the beach the pain was horrible but I was determined to put it aside and feel the peace of the water. No matter what I did or how I distracted myself finding peace was difficult. 

I still felt like crapola that washed ashore.

People tell me how fortunate I am that I don't work anymore. I wish I felt fortunate. It really is tough to be in management mode on a continual basis.  At times, there is frustration but along with it comes the realization that life could be a lot worse. We can smile but that smile sometimes masks a great deal of pain. The smile also conveys a sense of well-being. Funny, isn't it? Well-being; that isn't even close to the real meaning of the word.

We manage a myriad of symptoms that change on a daily basis.

There are so many symptoms that plague us. We even ask this the fibromyalgia or something else? I get tired of explaining that another ugly symptom has reared its ugly head. I am lucky in one respect. I've got an incredible doctor that describes himself as "nosy." He doesn't brush me off and he sincerely cares about how I feel. We try to rein in the beast but there is a tiny place that houses the fear that every twinge and twitch brings. 

Trust me, it costs a lot to be sick.

Insurance or not....fibromyalgia is expensive. The management isn't cheap and it seems like something is always out of whack. Now, it's my thyroid that is dealing me fits. The thyroiditis is flaring up and my internal thermostat is fluctuating like crazy. I can't sleep, my skin is dry and I get hot and cold. They found a nodule on my thyroid and I have to have that checked out.  What comes next?

The days of running around like I don't have a care are history.

Everything that used to be precious to me has faded into the background. I had boundless energy, thrived on stress that came with my job, working in sales and I had a memory that bordered on eidetic. There was a sense of pride in myself and my abilities that are a vague recollection. Sometimes I don't recognize the person I've become......the person that can't remember why she walked into the room. The fibro burns off but when it hits it's thick and it envelops your world in a cold and thick blanket.

Back to the symptoms.

Pain, fatigue, muscle spasms, insomnia, stiffness when you stay in one position too long, difficulty remembering or concentrating and numbness and tingling. Then there's the sensitivity to odors, light, chemicals, noise, medications and heat or cold. They symptoms that I mentioned are just the top ones. There are MANY MORE. These symptoms can intensify due to time of day, exertion, hormonal fluctuations or even the weather. Is it any wonder they can't get a handle on this? 

So here's what we feel like
here's what we were.

and here's what we will be

It's Fibromyalgia awareness month.
Try to look past our smile.
We're trying our best.
There is no cure.
Sometimes we're not believed.
And that's just the good stuff.


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