I hate fibromyalgia. I hate the name. I hate that it exists. What is it?! What is actually happening to my body? No one knows. No one. There are so many holes. They haven't figured out the cause, though it has a lot to do with the central nervous system. What are the statistics for women having children AFTER fibro kicks in? What about the average life span of someone with this condition? I have no clue what is going on! It's all a gamble. And I just have to accept it all! I just sit here and feel miserable and try to work my life (haha funny since "life" now means being a hermit) around this monster that has stolen so much.
Fibromyalgia.
I feel like a failure as a daughter, sister, aunt, niece, girlfriend, cousin, friend, nanny, mentor/spiritual mom, and lover of Jesus. I am never going to be strong like I was. I will probably always have to pace myself. I still love working with kids, yet I know I could not do it everyday again. The noise alone would slay me, although the constant energy required would be a close second.
I miss being able to connect. I miss being able to hold things without my hands aching. I miss being someone my brother could look up to. That the girls DID look up to. I miss having energy. I forgot what that feels like. To be replenished by sleep. How long has it been since I had energy? I miss being strong, being strong, being strong. Moving my own furniture, lifting things, moving fast all of the time. Efficient. That's why I get so agitated when people move slow. Because I lack speed! I envy them.
I want to relax. I want to pause. I want to spare the people in my life from hearing about my ailments. How not to speak of it when it's all I see, feel, taste, and touch?
My prayer for a long time was for God to strip me of my "go go go" attitude. I was the planner, the coordinator for hanging out, events, whatever. I was "the" friend to talk to. I'm not boasting, but I enjoyed being plugged into so many people.
Now there is immense pressure to be the old me. People have flat out ignored that I have a serious medical condition, or else have gossiped about me behind my back wondering if it is real. It's getting increasingly difficult to be out. It causes anxiety galore and I cannot tolerate sounds at all. I am so easily overwhelmed.
I had an adventurous spirit. I had energy. I loved to laugh and have conversations. Where did I go? I am frozen behind this failing body and this mind that is slowing down and forgetting on me. I am 30 years old, but I feel 75 inside. My memory has gotten so fuzzy. I hide it and I don't pay attention to the fact that information is missing or messed up. If I think about it I might freak out. Sometimes I almost convince myself I don't have fibromyalgia. Like it was a wrong diagnosis and it was really something curable, and I'll be healthy again! I am confused about being sick. On one hand I am at peace with it and I am trying to find a more fulfilling lifestyle with the condition. On the other hand I am so full of grief over the health I thought I had. No matter what- good or bad- I had my health. Now I feel off kilter. No health is a big thing.
I see this barren, dry, brittle season of my life making way to something colorful and teeming with life. Right now, however, I am so full of anger and sadness. Is fibromyalgia real? How long did it lurk in my body waiting to manifest itself? Was it there when I was a little girl reading scary stories books or playing Barbie's? How about when I got my first job or moved to Georgia?
It seems as though my life before all of this was merely a trial run. I moved fast and did a lot. I know my past has prepared me for this. Today I stared at my reflection for a long time. Who am I really? Past the external- who am I?
"I defend you. I protect you." The familiar love of my God washed over me. I am in a hard place. There is no magic pill that will make this go away. Until the day Jesus heals me or I die, I have fibromyalgia. BUT I am not as alone as I feel. My Jesus is with me. He loves me. He has a plan that is in effect even today as I feel angry and sad and like I will never be okay again. Being in this state of constant pain and fatigue stirs in me fierce prayers for people who are in pain. It increases my compassion and unfurls prayers of desperation over those in my sphere of influence that so need healing or the glory of knowing their Savior. That I can still be used by God despite my condition is humbling. An ache fills my chest to the brim as I realize that only here in pain and confusion and heartbreak can I truly know what it feels like to be broken by illness. The burden on my heart is to see people set free from Cancer and chronic illnesses and pain that modern medicine cannot fix. Even if I am sick until my last day I pray that I will give myself continually to Jesus so that others may be set free from their physical and mental captivities. Lord, please continue to strip me of my own flesh. Use me for your purposes alone. Take my fear and pain and use it to reach others. Here I am learning to not only sit but marinate and REST at your feet, Abba, and to let the frantic pace of the world around me become white noise. I look to my past, to all of my glory moments and I grieve that loss. That person I used to be, but I welcome who you are making me out to be. I am scared but you love me God. You have blessed me to have a fighting spirit. I won't back down. The nightmares I've been having, the enemy trying to take me out... I say no to all of that. You can handle my grief. You can take my confusion. Everyday I want to stay in bed. I'm so tired, I'm so in pain... blah blah, but I make myself get up and I live.
I LIVE.
You did not die for me so I could sit here defeated. You died for me so that I might live. I look forward to the day that knowledge meets action and I will know exactly how and when to pace myself. I will find my now again. Fibro has misplaced me, but I'm still here. I must adhere to my limitations and not get caught up in the rat race again, but I am alive. I would not wish this condition on anyone. Cancer patients have said themselves that fibromyalgia is worse. Wow! Can you believe that? Cancer patients!
Recent happenings:
-Last week I started getting bad leg cramps again. One night Mylie was staring at me. "Aw poor Auntie Janet. I wish I could do something to make you feel better." The little love proceeded to wet 2 paper towels and put them on my leg that was cramping really bad. I swear that child is full of the Holy Spirit already. She loves people and she is so compassionate. I love teaching her and watching her become a delightful person.
-Chest pains.
-EVERYWHERE hurts again.
-My skin hurts worse than ever. I can no longer wear shirts that cuff on the sleeves. It feels like a mild sunburn. When touched on my back or arm it hurts for at least 10 minutes afterward. :(
-Incredibly bloated. IBS has been insane.
-On the 17th I woke up and knew the nausea was going to give way to vomit. Finally. It's such a teaser! Everyday with the nausea (especially with the recent kidney infection). I threw up about 4 or 5 times. It wasn't violent like before, it was actually slow and the texture was creamy. Gross.
-My left hip is going ballistic (that's the side with hip bursitis).
-Sleep has been very interrupted and uncomfortable.
-My body is super stiff again when I first wake up.
-My mood has been quite unpleasant. The lack of sleep, pushing myself to be out over the weekend, and the recent cold have lent themselves to a very exhausted and overwhelmed me.
-Chocolate and soda are my enemies.
-I LOVE reading blogs where people share about fibro. I feel less alone.
-I am so thankful for the family and friends that have stayed despite my condition. Counterfeit relationships make themselves known real quick when one is unable to perform as they used to.
-Having people come and visit me is one of the greatest gifts. :) I'm done for a few days afterwards but it's precious to have a few hours to laugh and have fun without going out into the overwhelming bustle.
Seriously all I yearn to do is lay down in bed all day and not move ever again. I would be happy to simply sleep for 8 days straight. That's not going to happen. I WILL get up. I will shower.
That's the most laborious task. To get undressed, shampoo, condition, shave, and soap up and off. Rinse. Wrap hair up in towel. Dry off. Blah blah.
I must move slow. No more quick in and out. I used to call my morning showers "business." Meaning the morning shower was a to-do and if after working out or whatever I took a second shower that was for leisure.
Yes, I said business. Like I said I've always been efficient.
Now it's a HUGE source of energy to complete what was once a simple shower.
Make-up and blow drying/curling/flat ironing my hair seems like such a chore. I make myself do it (If I feel so crappy I at least have to look "normal" on the outside), but now that my hands seem to ache constantly I'm not sure how much longer that will occur.
Sometimes I feel like "own it girl." I see I still look like me even though I am a stranger to myself these days. Most times I feel like I must be deteriorating on the outside too. I am glad for the days I still desire to "sizzle."
I wonder: How do others see me? As a sick person? Am I disgusting?
My body is so bloated. My face too. I shrink back. How do I explain it's the fibromyalgia? That I can lose and gain up to 10lbs. in a single day. It's hard, especially since I can't work out. Everyone says to work out and that it'll hurt at first but to push through. Pilates is out. So is walking for a lengthy time. I am looking into yoga and once it gets warm I will utilize the pool again.
I miss working out.
A LOT.
I fumble around so much now. I have decided I cannot handle using a purse anymore. it's too hard to hold one, and my hands seem to fail me repeatedly. I'm not sure what I will carry. My mega comb has to come everywhere with me so... ;)
Mylie has taken to bringing her purse and little backpack too, so that's a lot to keep track of. Easier to eliminate my purse.
I'm just rambling now. Until next time.
