Not the most grabbing title you've ever seen for a blog post. I know. I really wish it wasn't a part of my life.
As much as I don't like it, it is a large part of who I am and how I am in this world, so I thought I should write some about it. I know this is the first time I am taking it on, but it isn't the last I'm sure.
Many have heard of fibromyalgia, but most don't know what it is. And even if you know someone with the disease, you still don't know. Fibromyalgia affects each person differently. My mom, sister and I all have this. It is different in each of us even, and we are related.
Fibromyalgia is a syndrome that shows itself in three main areas, widespread pain, fatigue/energy levels, and sleep. Some have one area that affects them more than others. For me, it started with just the pain. Then the sleep issues were added and now I deal with all three on a daily basis.
Unfortunately, no one knows why it happens, how it happens, or how to treat it. There is no cure. You can take medication to treat the symptoms, but if for whatever reason you stop the medication, those symptoms reappear.
The part that frustrates me (although my frustrations with this change daily, so this is today's complaint) is this. I know how old I am (in my 40's). I have always felt much younger than that is my attitude and demeanor. My brain thinks it is around 25. My body though, easily feels as if I am in my 60's. There are many things in life I still want to do, and some I have even tried to do, that my body just can't take. It is extremely frustrating. I almost have my Masters degree in Elementary Education and if I am in the classroom at all at this point, it drains all the energy I have. My brain and my heart LOVES kids. I enjoy that moment that you see the light bulb come on in their eyes. It brings me such joy to know that I helped a child take one small step that opens up their minds to the world around them and what they are truly capable of. But every time I teach Sunday School or volunteer in my boys' classroom, I come out with my mind buzzing with happiness and excitement, and my body drained of every bit of energy I have. After I leave church, I eat and generally sleep for 3 hours. I can't physically handle the job that I trained to do and love. There are many things that I have to say no to each day that I would LOVE to do. If you know me at all you know that for the last 4 years, I have written and directed VBS at our church each summer. My brain and my heart really love this. My body, on the other hand, hates this. It takes me 3 weeks to physically recover. 3 weeks of sleeping, hanging out at my house. The first week after it is even difficult to have the energy to get up and get showered and dressed each day. I'm blessed to have a great family, and an especially great husband, who understands this and makes accommodations for me. But really, I hate that they have to. I hate that I can't be everything I want and should be for them. It really bothers me. A LOT.
Which leads me to another big issue for me with my Fibromyalgia. Emotional stress and frustrations take a HUGE toll on me physically. All those everyday worries that we all have, drain me physically. What little energy I do wake up with each day, is sucked away with each stress or worry in my life. Just even something as simple as needing to wake up early tomorrow for a meeting at the school for one of my boys can ruin the sleep of the night before, and after the meeting, I am wrung out like an old wet dishrag and it is only 8:30 am. I can plan ahead for those things. Make sure that not much is on my plate for the rest of my day. The hard part are the unexpected things. The nosebleed of one of the boys. The phone call or Facebook message from a friend to talk with your about how what you said yesterday really hurt my feelings. Let me be clear here, I want to clear those things up with the people I care about, but those calls and messages take everything out of me, I am generally worthless for the rest of my day.
At this time, I don't have the physically energy to get me through a NORMAL day in my life, much
less a not normal one, and let's be honest here, how many normal days do we actually have?? Not
many. Every time I see a doctor, any doctor, I get told that I need to destress my life. Without abandoning my family, finding lots of $$ and becoming a hermit, that will never happen. And the hard thing is, I'm a people person. I love talking to people, being with friends. That brings me joy and laughter. I want to enjoy those that I care about and enjoy a 'normal' life to the best of my ability.
I wish I could end this post with answers. With a direction to head in. But I don't have the answers. And today is not a good day in terms of my fibromyalgia. I hate the feeling that I don't really know where to go from here.
