This is one of those blog posts that hurts to post. I hate admitting limitations. But I felt it needed to be said.
I do not have lupus. I have fibromyalgia. It isn't life threatening. I won't die from it. It has been known to completely go away in some people. If you see me you will never know I have it if I don't tell you. It has no visible symptoms. Most days I feel like a normal person, able to function, go to work, run errands, laugh, carry on with typical wife/mom/grammy duties.
Nevertheless, I still have to choose how to spend my spoons. For the days when I don't feel like a 'normal' person, like when it is really cold. Or there are thunderstorms. Or drastic changes in the temp. Or I've been really busy for a few days. Or there are added stressors in my life. Or when I get sick. Or sometimes for no apparent reason at all.
Everyone gets tired. Everyone has days when they just don't feel up to par. This is different. If you read the linked article you will better understand.
When you see me in public I will probably look like just another normal person. A bit over weight and out of shape, but pretty normal. There is so much more that you won't see. You won't see the muscle spasms. You probably won't see how I sometimes get confused and forget normal things, like planning dinner. You might not realize that I didn't sleep last night from the pain or muscle spasms, or just because I couldn't sleep.
And you won't see the guilt. The anger. The frustration and disappointment. Those happen when I'm home, alone. On the days when I look at the clock and it is 2pm and all I've done is get out of bed, make coffee, and sit. And there are no clean towels. And the kitchen sink is full of dirty dishes. And I haven't had a shower. And I'm embarrassed and ashamed that I haven't done anything on my to-do list.
Or when my husband texts at 5pm to ask if I have a plan for dinner. And I don't. And worse, I didn't even realize I hadn't thought about dinner. He has long since quit asking WHAT my plan is for dinner.
And then there is the fear that plagues me so often. Fear that people will think I'm lazy. Or irresponsible. Or that I don't care about myself or my family or my friends. Or that my husband will finally have had enough and get really angry that there are no clean towels and the dishes aren't washed and dinner isn't planned.
After all, I was the mom who sewed and cooked from scratch and made birthday cakes and homemade apple pies. I was always involved. And even though none of the people in my life expect all that from me, I miss it. I want to be that hyper, energetic person I used to be. It happens occasionally, for a day or so. Then reality comes back around.
But you will never see my other reality. Because when you see me I'll be spending one of my spoons. Or several of them.
And I'm thankful.
Because I have more spoons now than I used to have.
Because I can hold a microphone and sing in the worship team and sit through the worship service without nearly passing out from the painful spasms in my hands, arms, and legs.
Because I can spend time with my grandkids and enjoy it.
Because I can work.
Because I have a chiropractor who has helped me get off medication with awful side effects and learn to manage my symptoms much better.
Because I'm so, so much better than when I was first diagnosed.
And especially thankful because I have a wonderful husband who is so understanding, and asks IF I have a plan for dinner, not WHAT my plan is.
I still have a really hard time saying no. But I'm working on it. So today I'm CHOOSING how I will spend my spoons.
One spoon at a time.