My name is Natalie, I'm 29 years old and as you've probably guessed, I have Fibromyalgia and Chronic Fatigue Syndrome. Tonight is Saturday April 14 2012. The whole day has passed me by, actually, the whole week has passed me by. I don't think I spent much time with my kids or doing anything productive for that matter these past 6 days. I am left thinking "what purpose have I even served this week?". Let me back up a little. In September of 2011 I was finally diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. I'd known for a few years that something was definitely wrong with me, I mean, I was in my 20's but I felt like an old lady with the flu most the time.
After being diagnosed I felt a bit of relief knowing that I wasn't just crazy or lazy, there was a reason for all of my pain and fatigue. I was a little nervous though about the diagnosis because as of yet there was no cure, not a lot known about it, and frankly it seemed not very accepted as a legitimate disease. You see, while I knew I wasn't a "wimp" or "lazy" I wanted my family and friends to know the same thing. All I could do was ask them to educate themselves on it. I still find it very frustrating that my husband has yet to sit down and actually learn about it. He said, and I quote "I don't need to research it on the internet, I live with someone who has it." What a slap in the face. So, he cares to research all sorts of stuff about guns and cars, including a gun he "lives" with, but he can't care enough to learn about a disease his wife has.
Okay, I got a bit side tracked there, sorry. After diagnosis I found a medication that helped me manage the pain but it didn't help with the fatigue. About 2 months ago I found another medication that drastically changed my quality of life. While the pain is, well painful, I've learned throughout the years to deal with the normal "non-flared" everyday pain. The fatigue on the other hand was very debilitating. I found myself most days feeling like I needed to just lay down under a heating blanket and sleep; I couldn't do all the things I wanted to do with my family and it made it almost impossible to take care of the necessary things in my life. Okay, so this new medication actually has been affective in keeping me from feeling the affects of the Chronic Fatigue. I have energy again and I, when I don't over do it, feel young again. I can clean, play with my kids, take on tasks and so on. I love it. Here's the problem though, because I have energy I'm mistaken on my body's ability to work.
So, going back to this week. Easter Sunday my family went to my aunt's house to fix it up. There was damage to it and some deep, deep cleaning that needed done because of people who lived there with her and took advantage of her. They are no longer there. Any way, I decided to put my whole self into serving my aunt on Easter, I mean, what better thing to do and teach your kids than to serve on the day that God served us in the greatest way ever? I worked from 11am to 9pm with only a dinner rest. My step-mom kept telling me to stop because she knew what would happen to me after. We are living with my dad and step-mom while my husband works on getting his new heating and and air company off the ground and stable enough for us to be out on our own.....that's a whole other story. So, because we I live with my step-mom and she stays home as well, she sees first hand what having energy and over using it does to my body for days after.
I should have listened to her. Not to her surprise but to my disappointment, I was completely "out of commission" the next day. The pain was crazy; I couldn't even get out of bed until that evening. Tuesday I was still in a lot of pain but it was manageable and I could get around. Wednesday I woke up with more of my "normal" pain level but feeling sick. Thursday I broke down into a self pity fit from my frustration of not being able to be "normal". There are so many things in my life that I want to do...goals, hobbies, dreams, ministries....some selfish and others not, but when I have weeks like this last week I feel incapable of moving forward with any of them; life is put on hold, I have no control, and I feel like nothing will ever get done. I decided at that point that I can't have weeks like this anymore. So, how can I prevent these weeks?
Well, I find emotional and physical stress cause "flare ups" in me. I have already eliminated a few emotional type of stresses that I could reasonably eliminate but life is full of stresses. I need to learn my physical limits and how to manage emotional stresses. I want to do so much but I'm realizing that I can only do a few things that I enjoy so there isn't so much "on my plate". The rest of me needs to focus on Cross Tuition (non-profit charity I founded in 2008), my girls...including home schooling them, and my husband. I hate that I'm having to give up on giving of myself because I truly love to serve.
I had a conversation with God on Thursday, well, it was more like a child complaining to her dad. I told Him that He either needs to take away all my desires to serve and do more or He needs to take away the disease. I also reminded Him, not that He needs reminding, that just like Moses I'm completely unqualified to run Cross Tuition and to home school the two precious children He gave to me. Not only do I lack the education and "know how" I lack the emotional and physical capacity....without risking a "flare up" to actually be successful with either of them. I know God has called me to both just as He called Moses to go talk to Pharaoh and get His people out of Egypt. Moses felt he couldn't do it because he had a speech problem. God decided to give Moses a way by having his brother, Aaron, speak for him. So, if God wont take away the desires, calling, or disease, then I need Him to give me an "Aaron". I'm interested in seeing what He does and I'm waiting with thanks for His answer in advance.....I just hope my timeline isn't to far off from His.
Friday I progressively got worse. So here we are now, Saturday. I hardly slept last night because I felt so bad; almost went to urgent care this morning because I can't handle another week being sick and unproductive. I decided not to go after I called to find out the wait time.....there were already people ahead of me and the doctor wasn't due to arrive for a least an hour. I decided that trying to sleep would be a better solution for the time being. My husband got a call at 12:25pm from his mom. She was wondering if we were on our way to my niece's birthday party. MAN I MESSED UP! I felt so horrible. I completely forgot about her 14th birthday party today at 12pm. I can't imagine how we made my niece feel by forgetting and not showing up. My husband told his mom that he didn't even know about it, which he later remembered that he did, and that I was in bed sick. I HATE THIS DISEASE!!! Part of fibromyalgia are memory problems and a weakened immune system. If I didn't have this dumb disease I wouldn't have flared from helping my aunt, I wouldn't have gotten sick because I flared, and I wouldn't have forgotten my niece's birthday party.
I'm putting my foot down! It's one thing to be hurt from my own disease but I'm seeing how it's also hurting so many others around me that I love. Strangely enough, putting my foot down so my disease doesn't hurt others means I have to become very focused on myself (ugh! I hate even saying that; it seems so selfish). Putting my foot down must be done with patience and gentleness. I must learn to slow down so that I can speed up and to do less so that more can get done.
So here I am, writing to whoever will listen; maybe no one and that's okay but I will continue to write any way. I will continue to talk about my life and expand on who I am, other than a women with a disease. If anyone is there, I encourage your input, advice, comments, questions, or whatever you have to say. Would be nice to know you're there.