This has been a very rough week. Yesterday, I slept most of the day. I am not sure if most people understand the horrible fatigue that goes along with fibromyalgia, or Ankylosing Spondylitis, or any arthritis for that matter. Some days you feel like you can take on the world, and you try, then the next day, you are lucky if you can get yourself into the shower or dress yourself.
How many people get that phone call, to invite you to a special function? A birthday party. A special dinner. Movie even. You have been locked up inside your house for so long, going out and talking to an adult seems like you are going to Hollywood, and you are so excited. Then, the doubts and anxiety starts to set in. That glorious day hasn't even come yet, but you have already lived it in your mind.
The pain of getting ready that morning. Trying to decide what to wear, because you haven't worn anything nice in ages. Most things that touch your body bother you, so you stick to sweats, or loose fitting clothes. So, you spend a few hours trying on clothes. You are already exhausted, and starting to think of excuses not to go. Your hands are so hot and sore from buttoning the clothing, then taking them off again. Your shoulders feel like they are starting to swell from pulling sweaters over your head. You know you are going to have to put ice on them before too long. You feel out of breath. Maybe you should just take a break, besides, the event isn't for a few hours yet. OH...but if you stop and rest, you know what will happen. Everything in your body will tighten up and it will take hours before you can start to move again without all the horrible pain.
You decide to take a hot shower instead. (Years ago I purchased a shower chair so that I could sit in that hot water and let it run down my spine. It was also safer for me not to stand to long, or to hold my head back with my arms over my head.) The fatigue is becoming overwhelming, but you know your friends are counting on you, again.
Out of the shower you try to dry off and get dressed but your body is getting too cold and the pain is becoming so unbearable, and you can hardly get the buttons fastened. Holding onto the wall, you make your way into the living room, telling yourself you will take your pain medication and rest for one hour and then you will go and enjoy yourself!
This all happens in my head, right after I accept the invitation to go...., and it usually finishing up.....
Resting on the couch, the pain in your hips is so horrible, the pain medication isn't touching it. Lord, I hate when people ask me what is it on that pain scale! I rub my legs, I rock and I rock..nothing. I get up and turn on my heated mattress pad on my bed, HIGH, and I get in and wait. Wrapped in my blankets, I finally start to feel the heat, but I realize, it's already been an hour and I need to get ready to go.
As I feel the hot tears rolling down my face, again, I pick up the phone...
Hi, this is Carla....
Can't imagine what that would be like day after day. Maybe your friends need to come to you instead.
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