I have  had a pretty good few weeks with my fibro, the pain was there, it never leaves, but it was bearable.  I was working, babysitting, playing my kids(and the ones I babysit for)being a “wife” to my husband in every aspect that is important to a marriage, a friend to the friends that have stuck by me through thick and thin, I was able to be the one helping others out when they needed it, instead of being the one that always needed help.  Even though I hurt, I felt almost human.  Then a little over a week ago, I got a flu or a cold, and went downhill very fast.  I spiraled down the fibro slide right into a flare waiting for me at the bottom.  I haven’t come out of my flare yet either.  I am still in so much pain, and on top of hurting ALL OVER MY BODY, I now have a pain in my side that I have had before and gone to the doctor for before, just to find out it’s fibromyalgia, rearing it’s ugly head once again.  I have had ruptured cysts on my ovaries(or atleast the fluid from a popped cyst) and they have caused this pain and there isn’t anything they want to do for me, so I lay around hurting for days on end…waiting for the pain to stop, and you can almost guarantee, by the time I would make it to the doctor for it, it would be significantly better or just AS bad as it was, but all the tests come back negative.  Fibromyalgia can affect any part of your body, your mind, your muscles, joints, and your insides. 

I know that I am going to come out of this flare and feel pretty good but right now, I just want somebody to take care of my kids for me, and my dogs for me and make them their meals.  I don’t want to ask anybody though because I have been working more hours and babysitting that I don’t feel right asking somebody to take them after being away from them for so long.  Right now…I want to crawl in my bed and sleep, but I am a mommy to two young children that need me to get up(not easy)get them dressed(really not easy) and make them meals(really really not easy)and keep them from beating each other up or getting hurt from climbing on or in things(extremely tiring and difficult to do).

I can’t wait until I get back to my pain that doesn’t cause me to bend over in pain, and I am having a very hard time coping with the idea of this causing me so much pain and dealing with the fact that I am 28 years old…29 in a few weeks…and I am going to have this monster in my muscles and body for the REST of my life.  I have been short tempered with my husband and children because I don’t feel well and even though I know I am doing it…it’s like an outer body experience, I can see that I am being wretched, and nasty, but I can’t seem to stop the garbage things I say from coming out of my mouth.  I have found myself in a position I don’t EVER like to be in, I have to apologize.  I have to find a way to make it up to my husband for being so awful to him.  I hurt so bad, I just want everybody to let me rest, but it’s impossible.

I know this too shall pass…and that is what I am hanging on for.

I also have to remove the stress out of my life. I tend to internalize everyone around me, so if they are stressed and having a bad day, then I feel that stress in my body. If someone is crying, then I am crying inside which then brings me pain. I think that the biggest stress in my life was living with a man for 13 years who was bipolar. I never knew what direction I was heading from day to day. I never knew what word would send off a reaction of yells. My body then started to respond to these temper tantrums and out came my fibromyalgia. Not only was I in pain emotionally but now my body. So, I became lost. I sought out the Lord, crying for help, healing, direction. The only direction he gave to me was to leave. So I did and so did the pain. I found myself and love again. I met a wonderful man who showed me what true love was about. I thought my life had been returned. I guess I started taking credit for myself instead of giving it to God.
I was given an amazing opportunity for my career. Little did I know that I was going to be walking into another box full of pain. My new supervisor, I believe is bipolar. I see similar reactions and behaviors that I did from my exhusband. What I had learned how to deal with that type of person helped me deal with my supervisor for almost a year, however 3 months into the new position, the pain returned.

I am now back onto medications, taking each day as praise if I can walk out of the office with a smile. I thank God every night for his many blessings and I know that one day, I will walk in glory and without any pain at all.

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Mostly I try not to discuss how I feel with very many people. Usually they do not really care or the explanation is longer than they anticipated. Most people won’t believe you are ill no matter what you tell them. So mostly, I listen to them and save my feelings and complaints for my wife, who graciously listens to me as I embark on one of my “tangents”. Even with her, I try not to complain too much, it takes away from her being able to tell me how she is feeling. I have learned to save my remarks, on my condition, for a more suitable time. There are times when I need to express myself, and so, I tell my complaints, and such, to Jesus. If I could not talk to him, I believe all this would just drive me insane. He fully understands anything I am going through, because he is the one who has allowed it. Sovereign over all things is what his word teaches me about the events that do and do not happen in my life. Regardless of my understanding, these life events and circumstances will ultimately serve to bring glory to Jesus. He causes all things to work for good for those who love him.

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Reality

I’m walking in a fog

That’s only in my mind

Reality escapes me

With the passing time

All my recent living

Seems but a distant past

And all my faithful fantasies

Have even left my grasp

The struggle to continue

Becomes harder every day

Each time I try to hold on

I just get pushed away

Surrounded by an enemy

I just can’t see or hear

Too hard to see The Truth

If it be far or near

With all the battle raging

It is difficult to cope

That’s why I trust in Jesus

In him I put my hope

He will never leave me

For I know his word is true

He saved me from myself

Before I ever knew

db (C)

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 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.

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Loved ones want to help but are frustrated, they see us in pain and can do nothing, outside friends and family members do not believe we are sick, children do not understand why we can not attend events with them…

Our world gets ever smaller…
It hurts to sit
it hurts to stand
even a loving hug can cause pain.

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.

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