Living With Fibromyalgia

I am a mother to two very young children who were very excited by their visit from the easter bunny.  Very excited.  I used to think being my kids’ easter bunny was going to be so much fun, just like being my kids’ santa claus., and while it is so wonderful to see the joy in their eyes, it is also , extremely difficult to stay up later preparing for it, and getting up earlier than them to finish setting up the easter bunny scene.

This year for Easter, I cheated.  I ordered a pre made Easter Basket from a local video store.  They were the cutest baskets that were plush and able to be used by my kids for other things, and it wasn’t all jam packed with candy either so we didn’t have to have the sugar rush on top of the busyness of the holiday.  I know that I may have been able to do their Easter baskets cheaper on my own, but I needed to take a short cut somewhere. 

We have been doing Easter Egg hunts at local community hunts, and I have been doing more work outside the home, so I needed to cut back somewhere…and I didn’t want to cheat my kids of Easter baskets.  We colored eggs a few days ago and every egg my 1 1/2 year old colored wound up broken, but she had a blast so it didn’t matter, and almost every egg my 3 1/2 year old colored came out orange, his favorite color.  My husband had the incredible hulk fingers and hands because he preferred green and instead of using a spoon or an egg grabber, he used his hands. (okay..I admit it, I used my hands too.)  My husband and I both wound up with more egg color on us than either one of our kids, and it was fun, but even coloring eggs, bending over the kids to help them get their eggs out and then taking them out of their chairs and into the tub…wore me out.  My husband had to finish bath time because I simply could not go anymore.  I never knew coloring Easter eggs was strenuous, but I felt like I had just completed a marathon.  Goes to show, you never really know what you take for granted before you have fibromyalgia, even something as simple as coloring Easter eggs is exhausting.

I had some baking to do for this holiday and had to include my little man because he loves to help his mommy bake.  It doesn’t matter if we are doing a simple boxed cake, or a cheesecake or chocolate chip cookies…whatever it is, he wants to help.  He really does help now, now that he has the hang of it, but before we “mastered mommy and me baking time” it was way more work than I was wanting to deal with.  I am glad I did though because he does quite a bit of the work…and he thinks it’s fun.

We had to go to two places for Easter because my husband’s parents didn’t have anybody going to their house, so we couldn’t have them alone on Easter, and my grandma wanted to do something that evening for Easter, and we had already confirmed lunch with my inlaws…so grandma’s was a few hours afterwards.  In between that, I had to find a way to get my kids to take a nap so we could get through the rest of the day, my son just wanted to play and my daughter wouldn’t sleep, so I took her to the bedroom and laid down with her and must have been more worn out than I thought I was because I fell asleep and was out until my daughter woke up from her nap with mommy.  She loved sleeping with mommy, but I never take naps because if I do, I am up all night, which is what is going on right now.

Now…everybody is asleep…my son in his room finally, and my daughter in hers, my husband is out like a light as well as my two dogs and my cats and I am mad because I want to sleep, but because i was too worn out to stay awake from the hustle and bustle of this busy weekend,  Iwound up taking a nap and now I am wide awake.

I never knew fibromyalgia would cause me to dread some of my most cherished holidays.  Nowadays, Easter and Christmas, Halloween and the fouth of July have become way too much work.  I miss the days where I could bake cookies and party with my friends, and still function happily at all the family gatherings.  I still love the quality family time, but don’t love how I feel tonight.

I know have a house to clean that seems like a tornado moved through it…even though it was cleaned last night.

I had been teaching a Sunday school class when I was diagnosed, and the strain of preparing a lesson and then presenting it was starting to wear me down. This was on top of continuing to work full-time and attempting to maintain my home responsibilities. After missing Sunday service several weeks in a row, I finally had to resign from teaching. This, contrary to the reaction I got from others, was one of the hardest things I believe I ever had to do. I still believe that God has teaching in my future, I know not when or where. At this point, I nearly completely withdrew from attending my church. My wife and I only attended a handful of times during the year. Because of my condition, services either irritated me, or brought severe pain and exhaustion from sitting or standing for any length of time.

I continue to study God’s word. It has been a comfort, given me a wealth of understanding and some not so subtle correction when I have needed it. It seems as though God pulled me away from everything else so he could teach me things I would have otherwise not known. One of the many things that God taught me in this trying time was that everything, and I mean everything has a purpose. Of the things that I did not want to learn about myself, was that I was guilty, guilty of many things, but one thing in particular, idolatry. Idolatry, yes idolatry, “but all I’ve done during this time is try live with this disease that you have allowed. I’ve studied your word when I can, I pray all time (well not all the time) more than I used to”. “I’ve learned everything I could about what you’ve given me.” Guilty, How? This awareness of my guilt took me by surprise, but then I realized, he’s right. Jesus was no longer as important to me as he had once been. Instead of relying on Jesus to bring me through whatever my Fibromyalgia would bring my way. I had put it and how it was ruining my life in a place higher than Jesus. Yes guilty I was. The revelation of this matter brought me to my knees as the full realization of what I had done hit me. There were no words that I could use to explain my way out of this. I had discarded the Name above all names, I had thrown out the King of kings, I had walked away from my savior, the one who bought me with own suffering and his own blood. I had replaced him with my own physical condition. What vanity, what pride, what selfishness, I had no words to express my sorrow. It took me several days of pondering my spiritual condition before I could even approach this in my prayers. The Bible is clear, if you wish to follow Jesus you will partake in his suffering. We are not to act as if our affliction is something strange, but something to be expected and rejoiced in. God matures us through our trials and tribulations. Our affliction here is but for a short time, and it readies us for what comes later. These were truths that I had studied and taught before, but suddenly I had a different understanding of what they truly meant. I had forgotten who the Great Physician was; I had forgotten whom the Master is, I had forgotten to keep my eyes on Jesus. What can I do now? I was caught, I was busted, I was found guilty, what did I do now? I felt so foolish, so ashamed that I did not even notice this happening.

The one thing that came to mind was that if we confess our sin, he is faithful and just to forgive them. So, I did. Does this mean that my fibro went away? No, it is still here, and still trying to take first place, but I know now what this battle is for and can recognize it for what it is, a part of the plan that God has for me. The part that shows me where my faith and strength lie, where it always has, in Gods hands. No matter how bad I feel in the mornings when I get up, I try to remember to thank God for one more day. I try to always call on his direction when plans need to be made. I try to rest in his arms when my symptoms flare. Am I always successful at this? No I am not; I am still human with human limitations. Some days I just want to give up trying, some days I’m stubborn and keep trying when I shouldn’t. Some days this disease gets the best of me no matter what I do, and when it does, I trust that Jesus holds me through it all. The one thing I do not want to happen again is to let this fibro become the most important thing in my life. It is a big part of my life, and unless God changes that, it will always be. People will not always understand why I do the things I do or why I don’t do the things I don’t, and that’s okay. Jesus knows my heart, and will finish the work that he started. After all, he is the author and finisher of my faith.

Fibro came in my life and turned it upside down. I could let rule over me and relive my frustration over and over or, I could give it to Jesus and watch him work it for my good.

 Check me out at eHow! http://www.ehow.com/members/damari66.html

Fibromyalgia, that’s what he called it. My doctor gave me a brochure that described my condition. The relief and joy of knowing this wretched thing finally had a name quickly dissipated as I conducted my own research into this disease. It seems that, although this is a non-degenerative condition, many in the medical field dismiss it as nothing or a product of depression, and this is incorrectly based on the fact, that there is no specific test for the detection of Fibromyalgia. Still many others are ignorant to the diagnoses and treatment of Fibromyalgia patients. In fact, many people, who you thought would understand, do not because the mainstream perception is, if you look fine, you must be fine. You soon discover that very few people are willing to believe that you are sick. Not many friends understand that you can’t do the same things you used to do. Some family members become indifferent to your complaints. You suddenly find yourself in a very alone situation with no one to turn to. The responsibilities and tasks you once handled with ease are now nearly impossible to complete. Mental tasks once completed with speed and accuracy are now cumbersome, and not so accurate. Decisions are extremely difficult to manage, even little ones. Verbal expression, once done with a quick wit and large vocabulary has been regulated to a slow demeaning process in which you struggle to recall the word you were about to say. You can hardly express to anyone what is going on with your mind and body. Every event, every emotion, every thought, every action, every sensory input and every stimulus becomes extreme. Your identity, the very core of your being, is now transforming without your permission. Yet, these things are not the worst part of the disease. From my perspective, the worst part of this begins to show its self when you realize the expectations from those around you, of you, are still the same. You are expected to shoulder all the responsibility, and all the working capacity that you had before. This is not only frustrating for you; it is impossible for you. Try as you may, you will only end up in a worse condition, when you try to comply with the expectations of others. The only thing you can do now is relearn what your body is telling you about what you can and cannot do.

Very little can be done to eliminate the symptoms, but some experimenting with different medications can provide a small reduction of the pain levels. The symptoms seem to run in cycles, good days followed with some bad days, they can be affected by many different things in good ways and bad ways, but sometimes it doesn’t matter what you do, you can still have what is called a “flare”. The flare is an acute acceleration and escalation of symptoms. The flare can last any length of time, from a day, to months, or even years. Most people who are diagnosed with Fibromyalgia are women. Many people with this illness have become disabled to the point where they can no longer provide for their families or even make any contribution their family.

After I was diagnosed, my doctor sent me to local “fibro clinic”. I was fortunate enough to meet some people there, who not only believed this is real, but also understood the reality of what was happening to me. There I learned to reevaluate what was going to be important, and to direct my energies to that. I also learned that to make the most of my energy, I needed to exercise (which seemed impossible at first), and try different kinds of therapy to see which might be ones that helped my symptoms. Exercise, which must be maintained, and must be low-impact, is one of the most important things in dealing with Fibromyalgia. What pain medications are just as important. An open mind to these two things will be what makes the difference in your ability to co-exist with Fibromyalgia. Living, learning, and dealing with my Fibromyalgia had become the most important thing in my life. When you wake up in pain, and shower and change in pain, and go to work in pain, and come home in pain, it is very difficult to think of any thing else. When your movements are stiff and your mind is slow, all you think about is what you can’t do now.

Everything changes, from your work, to your recreation, to your relationships. Nothing remains the same as it was before. You have no idea if what you are feeling is the Fibromyalgia, or a reaction to your medication, or you caught a cold. Symptoms just happen when and wherever they want. Trying to make things up on days when you feel better only serve to create a flare, and make you stay in it longer. Its a vicious circle where the pain drives the fatigue and the fatigue drives the pain, talk about perpetual motion.

My beach ball world was now the size of a marble. Everything not considered absolutely necessary was eliminated from my activities. Some days all I could do was go to work, come home and go to bed until it was time to get up the next morning. Sports had to go, hobbies fell by wayside, church and social activities were abandon, and relationships were left on hold. I no longer could assist anyone at doing anything, and I had been the kind of person that would stop and help just about anybody do whatever needed to be done. Yard work and house maintenance was only attempted on special occasions. Vacation days from work were used as recovery days or catch up days until they were used up. There were too many things I could no longer do and not enough things that I could do; it was a very depressing time. Places that required interaction with large numbers of people left me wiped out for days. Loud places required so much concentration that I felt as if I had run a marathon after only a few minutes of being there. Work became a big issue, and after several months of discussing things, some of the more physical things were shared with others at my work place, and I became more administrative. It is not a perfect world there, but at least they are working with me so far. I know that my family is wondering what happen to person they used to know, and I wish I could give them that person back, but I can’t. The best I can do about that is to be who I am now without deceiving them about the old me returning. I can only hope that who I am now is enough for them. I’m sure they are as confused about what’s been happening as I am, and I try not to forget that they need understanding too. They have to adjust to someone they did not know before, just as I have to adjust to the new me I didn’t know before. There were too many changes that I didn’t want to make. There were so many things that I had to give up. Adventures I couldn’t take. Dreams that died too hard. I was alive, but my life was dead.

How to Videos & Articles: eHow.com

Check me out at eHow! http://www.ehow.com/members/damari66

I remember growing up and whining to my mom, “that’s not FAIR!!!”, only to have my mommy come back with “LIFE’S NOT FAIR” If only then I knew what I know now…Life is not fair.

Why is it okay for a small town girl , a cheerleader, babysitter, big and little sister, daughter, with so much ambition and with such a big heart, a friend…to be teased about her weight from the boys in her school? Life’s not fair…that’s why.

Why is it okay for a small town girl to lose her best friend to a lie that wasn’t true? Life’s not fair, that’s why.

Why is it okay for that small town girl to find the love of her life and marry him, only to lose a lot of her so-called friends because she married a cop? Life’s not fair, that’s why.

Why is it okay for a woman, and her cop husband to get pregnant and become so overwhelmed with joy, just to miscarry that baby and have their dreams and hearts shattered? Life’s not fair, that’s why.

Why is it okay for that same woman and her husband the cop to have to healthy babies and a happy life, and then get smacked in the face by the fibromonster(fibromyalgia), life’s not fair that’s why.

All of these situations have happened to me, but do you know why that small town girl got teased for being fat by the boys?…because those were young and immature boys, and as soon as I got to college, I found out that not everybody is as concerned with weight as those mean high school boys were. There were guys attracted to me for ME.
Do you know why I lost my best friend to a lie?… because she went her way and I went mine and if we had stayed the friends we were, neither of us would have the life or family we have now. We were really bad influences on each other, and it took losing her, for me to realize that I need to straighten up my act. And do you know why I lost my friends when I married a cop?… because I found out who was going to be there for me through thick and thin and who was going to be my life long friends, and who were just temporary friends that I HAD a great time with and some memories that will always make me smile with . And do you know why I had to miscarry a baby before becoming the mother of two wonderful toddlers? Because God needed my angel and he wasn’t ready for me to be a mother yet…it took another year or so for me to have my family we dreamed of. And do you know why God didn’t give me Fibro before he gave me babies? I do. I know that God knew how much I could and could not handle with my fibro and had I gotten pregnant after I had the fibro, I would have been a mess.

So, here I am a mother of two fabulous toddlers ages 1, (a girl Ruby), and 3,( a boy Levi). I am a wife to a man that has to be the most courageous and strongest man I know because he puts up with so much when I am in a flare. I gave him an “easy out”, I told him he could divorce me if he didn’t think he could handle the fibromyalgia and if he didn’t think he could take care of me while in a bad flare, which might include, helping me to the bathroom, helping me get dressed and undressed, helping me in and out of my recliner on my bad days…and do you know what he told me?

He said…”I said for better or worse and I meant it, Sarah, I love you!”  What a man. I pray and hope that anybody that is slapped by the fibro monster will get the chance to have a loving husband like I do. Don’t get me wrong, he has his days where the fibromyalgia is just too much for him to handle and he gets mad. Sometimes at just the fibro, and sometimes, even though he knows it’s the fibro, at me…because lets face it…distinguishing the difference between the person and the disease is hard to do. Sometimes it’s hard for our loved ones to remember that we can’t help it that we aren’t as active as we used to be and we can’t help it that at the last minute we have to cancel plans because the fibromonster decided we weren’t going out for the evening.