Living With Fibromyalgia

It never seems to fail.  The minute I think I have my fibromyalgia under control…a new symptom jumps out and gets me.  I start thinking, my fibromyalgia has not really “flared” real bad in a long time, PRAISE THE LORD, knock on wood, whatever I have to do to keep things going smoothly.  

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.

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)

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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