Living With Fibromyalgia

Every morning the hardest thing it seems I do is getting up, but then the rest of the day happens and I was wrong. The hardest thing is the next thing, and somehow I cannot get away from the next thing. The bad part is that these are everyday simple acts, shower, dress for work, drive to work, etc. Each act is a process that becomes a physically and emotionally draining experience. As each process completes itself, my ability to communicate and express myself becomes increasingly diminished. By the end of the day the only thing I intend to do is make it home and go to bed. It is hard to keep a proper perspective when faced with this scenario day in and day out. Adjusting to this new “normal” is very draining, and depressing. The temptation to seek out permanent solutions to this frustrating existence is ever present. Thankfully, my conversations with my savior keep this in check. I have learned that he gracefully carries me through every battle with anxiety, every bout with negative thoughts, and every painful flare. Without Jesus, I would not have made it through any trial, no matter how big or small it was. He has been my lifeline, my hope, my comfort, and anything else I have needed. I am also sure that he has provided my family with the grace to put up with the new me; the less patient, easily irritable, always tired, and the, not so articulate me.
Having a chronic illness, such as Fibromyalgia, creates an environment in which one wants to take the path of least resistance in any situation. I have found that to be true, at least in my case. This (new normal) attitude does lend itself to the creation of additional frustrations such as incomplete projects, procrastinating to the point of “now forgotten” and other seemingly lazy inactions. Although those of us “in the know” realize everyone else was fortunate we remembered to start anything, much less have the energy to finish something. This conflict between this “invisibly ill” and the  normal population will no doubt continue in a frustrating manner unless I (the person with the disability) change the expectations of myself (still adjusting to that new normal) . Yes, the fault lies with me. The only way anyone will be satisfied with any job or project I do, including simple ones, will be if I am honest with them about my capabilities. If I continue to say, I’ll do this and I’ll do that when I know I cannot, the conflict will remain. There will be times when circumstances beyond my control will render something unfinished, but that is no different from what happens to anyone else. When I commit to do something, even if it is one thing, and it is left incomplete, the frustration will arrive. Learning to understand the new limitations, that come and go, is an ongoing process, what I can do today, I might not can do tomorrow, and in the same respect, what I cannot do today, I might can do tomorrow. This is very hard to adjust to, but it is my new “normal”.

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)

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.

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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.

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I can still recall, in my mind, the events of the year 2001. It was the year I became someone else. This was not something I had planned, or even foresaw, it just happened.

At a certain point early that year, my wife knew that something was not quite right. I had come home early from work, and by the time she got home, I had already made an appointment to see my doctor. I had experienced some strange aches and pains in the fall of the previous year, but just dismissed them as a product of just growing older. It soon became evident that this was not the case, the strange pains were no longer small and random, they had become focused and intense. As time passed and doctor visits became more numerous, extreme fatigue had become a willing partner to complement the aches and pains, which had now spread to most of my body. Other symptoms began to accompany the pain and fatigue, headaches, cramps, memory loss, inability to concentrate, difficulty in making decisions, even anxiety and irritability. Tests after tests revealed nothing but negative or inconclusive, for any possible disease or condition. No cause was determined, no micro- biological enemy; no chemical agents, no genetic flaw, no imbalance of hormones, and zero explanations for this nearly unbearable state. As perplexing as it seems is the fact that any attempt to subdue the pain and fatigue yielded almost no results. Many different drugs and combinations of drugs were tried to no avail. After several months, I decided I would conduct some research on this myself. I became adept at scanning any medically related articles for my symptoms. I spent countless hours researching web sites for possible conditions or solutions. I became determined to fix this myself, after all, I was known, by my family and friends, as someone who could fix just about anything. After several weeks of research I found enough information and acquired enough understanding to know that I should seek more specialized care than a general practitioner is equipped to give, so I did.

After several more months of seeing more tests with the result of negative or inconclusive it was determined, by process of elimination and some specific physical examinations, I had Fibromyalgia, a chronic illness. A chronic illness, what does that mean?
Chronic, continual, constant, unceasing, unending, persistent, unremitting, never-ending, ever-present, oh just pick one; it all means the same thing… it does not go away.
Illness, sickness, disease, ill health, poor health, not well, infirmity, weakness, unable, inefficient………I had never heard a more depressing thing in all of my life. The most unbelievable thing about this situation was that I appeared, to most everyone else, to be in perfect health. This fact just overwhelmed me to the point that I could not even admit this to myself. How could I, a perfectly healthy guy in his mid thirties be sick? I had even quit smoking a few years ago, and now played basketball and softball on a regular basis. I was now even an active leader in my church, one who was there almost anytime the doors were open. After so many years of observing life, I was finally becoming a participant, and now I am sick when I look perfectly fine. Somebody get a new calculator, because this just does not add up.

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