I've truly forgotten what it feels like to be healthy. To be pain free and active. Wake up happy, ready to start the day. I see pictures, I know I was in great shape and vivacious! The person I am today is but a shadow where the "whole" me once existed. If only the people that know me now could've known me then.
WOW.
Having this disease does change who I am in many ways. My mild OCD for having a spectacularly clean house and things JUST so was forcibly crushed by my inability to keep up. The pain sidelined me on the couch or wherever and the anxiety about the kitchen not being swept or mopped ate at me until there was just nothing left. I was forced to accept it. I don't like it, I never will. It will always bother me that I can't care for my home the way I desire. It'll bother me that when people stop by and there's dust here or there and the table is full of clutter...that they don't know that this is not the way it's always been.
Fibromyalgia is literally battling for my life. The doctors say that this is not a degenerative disease. HA!! Yeah it won't kill me itself. But what else gets chipped away? Emotional health and stability. Depression and anxiety take hold, your mind changes. I've become a more negative person in some aspects. My self esteem suffers. My peace of mind that I'll be able to take care of my children if something happens to my husband is non-existent. My husband. ugh. I know that those who live with me have to deal with the effects of this illness. It makes me incredibly sad because I'm the one who is supposed to lift THEM up and make their lives easier and more fun. Instead I am a burden. If the laundry goes undone, my husband has to do it to have clean clothes for work. That in itself riddles me with guilt. Which adds to the depression which effects my pain which makes me fatigued and so on. It's such a game of Dominos.
This disease is deadly. I had the potential to kill my marriage. But our love outweighs it, Thank God. It has killed my ability to fully enjoy anything. Even on the most precious days of my life, when we are having SO much fun, yeah I'm smiling but no one understands that I feel like someone has beat me in the back with a baseball bat or I've got a nerve in my shoulder that is burning intensely. As I'm writing this, my left shoulder and my spine are hurting so badly, it's a gnawing, wrenching stabbing pain. And it make me angry. How can pain really last or be consistent THIS long??
Fibromyalgia has broken my heart. I want to romp around and wrestle with my little girl. Toss her little 26 pound body up in the air and catch her and see that huge smile it puts on her face, hear that giggle that is priceless to my ears. Carry her around whenever she wants to be close to mommy. I can't. I want to more than anything, I just can't. It tears me up inside. I can get about 25 meters with her in my arms and than I have to have a break. I can't let her walk or climb on me while I'm laying on the floor. And I know she doesn't understand why she can do it with daddy and not with mommy. I've cried so much about it at night.
What a thief in my daily life. I lay in bed and wish there was someway to make the pain stop. My knees throb and my hips ache. I roll over and switch positions, constantly to take pressure from this side or that. Awh, "sorry honey, I know you love me but I can't tonight...I'm just hurting so bad." What a horrible feeling to have to reject your husband. Not that I ever want to. It's not fair to him OR to me!
He really doesn't grasp that I desire more intimacy too, I'm suffering alongside him and have guilt to go with it.
So many adventures I'd love to have with him: hiking, snowboarding, repelling, bowling and LONG bike rides. 6 years ago I could do any of that. Now I can only dream about it and hope that one day there will be a cure and I won't be too far gone from fitness to do these things.
I HATE doctors. I spend SO much of my precious time having to constantly re-iterate my entire 6 years of pain, how it started, symptoms, tests, physical therapy outcomes and BLAH BLAH BLAH. I know you're busy but SERIOUSLY it's ALL in my medical file...READ IT!! Doctor visits stress me out. I have to always wonder whether or not they will continue to help me abate this severe pain. And be willing to prescribe what works..which I have NO control over. No, I'm sorry Ibuprofen does NOTHING for me. Don't ask me why, if it helped, why in heaven's sake would I not take it? Do they honestly think I like having 6 bottles of medication and seeing them once a month. I appreciate them but they are NOT on my list of favorite people. The one I see now expects me to drive (with my 2 year old in tow of course) 3 hours to Landstuhl for treatment. Does she understand what an undertaking that is? Wrestle to keep Alayna entertained while having to deal with sitting in one place for 3 hours? Not to mention getting up EARLY (like 4:30am) to leave for the appt to make it there by 9...don't know if she understands that most times mornings and right before bed are the WORST times somedays. I usually don't wake up until 9 or so and then I have to start subtle stretching and moving just to get going, that last anywhere from 30 minutes to an hour. So maybe the husband can go? hmm...let's think on this: the clinic is open only during business hours Monday through Friday right? okay. Last time I check, my husband has a JOB and has to fly. Sorry if I'm not willing to spend his precious leave days taking care of medical issues. That's supposed to be when I'm about 65 or 70 and we have all day to do nothing but make sure we don't fall apart.
I am young, I am happy, I have a good life and deserve to enjoy it. Don't burden me with even MORE hardships of taking care of myself. The medical professionals should be doing what they can to make that part easier on me. I have enough crap to deal with in my life outside the doctors office while in pain...
So no, I will not die. I will go on living. Living with parts of me dying off here and there over time. Peaks and valleys of fighting spirit and throwing in the towel. I'll never be what I once was...but that...is apparently not the definition of death.
Only terminal suffering. I've got news for you.
Read more on my fun-filled daily experience here:
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