Yesterday I wanted to call my sister and tell her how amazing I felt. I had so much energy that it felt as though I would burst right through my own skin, and my muscles were having a hard time keeping up with all of the things I was doing, yet I managed to accomplish everything I had thought about accomplishing. “This is it,” I thought. “I’m cured. It was my thyroid all along. And now I have a new life. I can’t wait to do it all again tomorrow!”
And then tomorrow came.
I should know better by now, and I don’t mean to be bleak or morbid. It’s just a simple fact of life with fibromyalgia – everything changes, nothing stays the same. The pain comes and goes, the good days come and go. There is nothing constant but the changes, and you must do all you can to not get caught up in the current cycle, good or bad. Forgetting that the bad cycles end is pretty typical and very depressing, but it’s the warm glow of the good cycles that is the most dangerous; when you forget that the good ends, you risk losing hope once again. And that letdown is worse than any depression that any bad cycle can bring.
Hope is dangerous when you have an invisible chronic condition. Again, I don’t mean to be bleak or morbid, but it is the truth. When you get that taste of what life could be like again and you dare to allow yourself to believe it is really within your grasp and that you can actually hold on to it… Well, it’s like watching a loved one die over and over and over and over again when the pain returns, yet again, tomorrow.
Tomorrow. It’s a four letter word when you have fibromyalgia. Today is all you can really plan for because today you feel good enough to take the trash out so you better do and it anyone and everyone around you better coordinate and cooperate along with you to make this trash taking out thing happen, because tomorrow you might not feel well enough to even lift your coffee mug much less a trash bag, so it is of the utmost importance that it get done RIGHT NOW while you still can do it. And so it goes with hobbies, chores, outings, shopping, friends… Do it now, while you can, because there is no guarantee you will be able to do it tomorrow.
But every now and then a good cycle comes along that is just so good that you don’t even worry about tomorrow because you are confident that “This is it, I’m free.” It just feels right. You just know you will be returning to work. Your whole new life unfolds before your eyes, and you go to bed eager to wake and do it all again.
But when you wake, your hands and face are completely swollen. You can barely grasp your coffee mug or lift it to your lips. Pulling your clothes on and off is suddenly two steps away from impossible. Your feet feel like two overfilled water balloons. And every muscle feels as though you spent your sleeping hours clutching onto a rope for dear life.
And that’s when you know that you haven’t been cured, you won’t be returning to work, and your little dream has once again died.
Hope is a very dangerous thing.