I feel like my body has decreased my quality of life

Fibromyalgia has a lot of misconceptions attached to it. What do you wish people understood about fibromyalgia?

I wish that people understood that fibromyalgia affects my whole body, even when I’m not having a flare-up. My energy is low all the time. But I have times when my energy level get so low it’s almost impossible to do anything. Extreme low energy is an indescribable type of misery. At times it gets so bad I can feel like I’m about to pass out, or more so just ceased to exist. I sometimes feel like I’m moving in slow motion and the world is passing me by.

I pretty much conserve all of my energy for work. I have a stressful job that to me is very meaningful and I love it, but it takes all my energy just to get dressed and go to work, sit there all day long, and then trudge back home at the end of the day with my last ounce of energy. Every day I look forward to the end of the day when I can lounge in my oversize, double stuffed recliner with microfiber covering. Everything around me has to be so soft now, especially my bed, due to very sensitive pressure points.

There are so many things that I want to do but I just can’t do it. And if I push myself, I will be in so much pain by the end of the day, and that pain could last up to three days.

The pain itself can be excruciating at times. If the pain comes from heat, it can feel like all of my bones are cracking. If the pain comes from overexertion, all of my muscles will ache as if I just started the first day of training for a triathlon or something. My joints hurt all the time … if it’s not one of my thumbs, it’s my shoulder, or knee or one of toes ... any random joint or joints. Most of my pain is in my upper and lower back.

Has any one told you that "you don't look sick?"

I haven’t had anyone tell me that I don’t look sick. But I have had people tell me that they thought I just didn’t like doing things. It makes me feel like I’m lazy, which hurts because I used to be so active. I believed in “seizing the day“ every day. For me, burning the candle at both ends was a trick that I had mastered, or thought I had. I used to tell people “Sleep is for the weak!”  And maybe it’s true because I’ve gotten so weak over the last few years. No one would ever believe that I used to play tennis, run track and lift weights.

I walk with crutches now because my joints have become loose and I’m predictable, my knees don’t always catch when I take a step. I’ve have a similar a problem with my shoulders since I was in junior high, which has progressively gotten worse. Sometimes just reaching for something or trying to toss something into the trash my shoulder was slip out of joint.

I thing now my crutches make me look like a disabled person who is really trying to do it she can. But before the crutches, People used to look at me strange because I walked with uncertainty, always feeling like I could slip at any minute. Also I limped when I was in pain. The pain also cause me to breathe heavier, especially because I would sometimes hold my breath to endure the pain then when I got where I was going I would have to try to catch my breath. I’m sure people thought if I would exercise and lose weight that I could walk so much better.

Now, well-meaning people try to give me little tips like, “if you move more you’ll feel better.” But the fact is, even five minutes of exercise can mean tremendous pain and swelling later.

Part of me wants to hang on to hope that things will get better. But I know that this is my “new normal” and I’m going to have to except it, make adjustments as my normal changes, and do the best I can to just keep going.

Tell us, who is your biggest support system while coping with fibromyalgia?

I’m blessed that my boss tries to understand my limitations and allows me to work according to my strengths. I have a wonderful coworker seems to be able to relate to some of my issues and tries to help me where she can. And my mom is there for me in thoughts and prayers but she has a rare disease that has disabled her physically and cognitively.

My biggest support system is my son. He literally takes care of me every day... cooking, grocery shopping, cleaning. He doesn’t always understand everything that’s going on, but he does what he can to help me. He understands more than anyone, how fibromyalgia has taken over my life. It’s always been him and me against the world. He may not always be here with me but I know he’ll always be here for me. He’s my hero.

Also, I have a strong relationship with God. God has taken care of me from the very beginning and he will take care of me until the very end. It is my belief in God and His love for me that allows me to have happiness despite my condition. And even if my life becomes more limited and eventually I can’t work, I know God will supply what I need. And if you’ve ever been to Texas on a rainy day, you know that the sun may still shine through the dark clouds ... for me, God is that Sun that shines through the dark clouds of fibromyalgia.