Taking the good with the bad – life and fibromyalgia

There are things in life that you choose to do to yourself and others that are destined for you, although you don’t quite understand the “why.”

One self infliction was when I got a really bad perm.  My hair was half way down my back and I believed that a perm would guarantee beautiful curly long hair, just like a model with her perfectly styled spiraled mane.  Mind you, I was already married with two small children, and felt that I just needed a change.  So, the perm came and what I believed would be something wonderful winded up being a scrunched up mess.  My hair and its kinky curls shrunk to just below my neck.  Nothing seemed to calm down the curls, so I tried to make the best of it.  This was difficult for my husband to ignore, with his quick wit and nonstop humor.  He would awaken, see me, smile, and blurt out, “Good morning, Harpo!” all the while pretending to have a cigarette in his mouth as he spoke.  All I could do was smile, even though it ticked me off, because well, it was my doing. So every time my husband saw me, the words “nappy,” “fuzz head,” or my favorite, “Shirley Temple,” poured forth from his unsympathetic mouth.  Thank God, I had a sense of good humor.  I knew that my husband said these comments lovingly in his playful manner. I also knew that I took full ownership for my locks of sausage curls.  A bad hairstyle equalled a few months of wrestling with unruly hair until I could eventually have it straightened out again.  It was something I could eventually fix.  Although I felt like a fool for a while, I knew it wouldn’t be forever.

Other things in my life have been handed to me by the Lord above and all I can do is take one day at a time.

It’s something I rarely talk about, because when people see me, they wouldn’t believe me anyhow.

Fibromyalgia is something that developed in me after the birth of my third daughter. I was thirty years old and I don’t know why at that point in my life this condition came to me.  And I had no clue what it was.  About six to eight weeks after my surgery, I began to feel searing pain down my spine.  It felt like my spine was burning.  I went to my family physician and even she couldn’t find the cause.  Numerous tests revealed no damage to the spine or back.  All sorts of scans, MRIs, blood tests, etc. revealed nothing.  Nothing.

I tried to backtrack in my mind the surgery, the anesthesia, the hospital — could these elements have been contributing factors to my diagnosis?  I’ll never know because what emerged in my body after that point could only be described as a foreigner.  After the initial pain, other symptoms came to me:  ice-like feet and hands, insomnia, migraines, brain fog, depression, joint pain.  The list went on and on and because no one could see anything physically wrong with my body, they simply didn’t believe me. This included my family, some friends, pretty much everyone, including the doctors. I never at any point felt like it was “all in my head,” which is what came across the faces of many doctors who I sought out for help.  Finally after two years of seeking doctors, and enduring numerous nerve tests, one neurologist finally told me she felt it was Fibromyalgia.

The only thing I understood about Fibromyalgia at the time was that it was a condition of overactive nerves, which I had never suffered from before in my life. All the neurologist told me was that there was no cure and that I could try to manage my condition with medication. Some of these medications were worse than tolerating the pain.  They left me feeling unresponsive to life around me and with three small children at home, this just wasn’t possible. I needed to be present for my children. One medication, which I can’t recall now, made me feel so dizzy that I had to hold onto the walls to walk. What I discovered in the early stages of living with Fibromyalgia was that many doctors were quick to prescribe whatever drug would make the pain go away.  Only in my case, the pain would subside for a bit, only to bring on other side effects into my body.

It’s hard to explain to people when you feel such incredible invisible pain.  For instance, when someone is in a crash, there are bruises, cuts, scrapes, etc,.. all visible signs of trauma that one’s body has gone through.  The visible aspects of trauma make the person looking at the victim see them with eyes of compassion because the person sees the victim suffering.  With fibromyalgia, there are days that you feel like someone used you as a punching bag with every muscle, every tendon, every joint radiating with tender pain.  And no one can see the pain, including yourself.  There comes a point when the fatigue makes you feel like you’re dragging around and you’re in a fog that may take a full day to get out of until you see some light.

At one point, I sought out a support group.  What I discovered were these women were far worse than myself.  After hearing their stories, I couldn’t make my way back to listen again. Although I felt compassion for them, I also saw many of these patients consuming various drugs which didn’t seem to be doing much good, if not making them worse.  Antidepressants and pain relievers were the main drugs being used by these patients, and by looking at them, I felt like part of them was already gone, mainly their spirits.  They were there, but the part of them that saw some hope no longer remained.  It seemed as though they were hanging on for dear life, which I could totally understand since I too could empathize with their suffering.  For myself,  the thought of putting more chemicals into my body made me shudder.  I knew for these women the use of these drugs was saving them at the moment.  For myself, I needed to find a way to cope without more medications or drugs in my body.

I began to see people in a different light.  Especially those who used walkers, wheelchairs, or were immobile in some way.  I  really began to think, that could be me one day.  I would observe from a distance, a person wheeling himself around in his wheelchair, or a handicapped person getting out of her car. As much as I knew the handicapped person was grateful for the mobility of their wheelchair, I became observant of what I still had which was the pain.   And in that moment, I was grateful.  I was tremendously grateful for pain and the mobility to still move even with such pain. I’m certain that even the person with the wheelchair or disability was also in pain; however, at the time, I was still grateful that I could adjust and move about as needed. I decided early on that I was going to take each day as it came to me, pain or no pain.  It was determined that a “flare up” day with its fatigue and pressure point pain was going to be rough, but a day with some slight aches and pain was considered a good day. It was my choice to see life as it came to me; it was something I still had control over in this situation.

My faith was also part of the picture.  I knew God had never deserted me, but I also knew that I needed to rely on Him more to help me through this condition.  I reasoned that before this condition set in, I could go nonstop with all sorts of chores, activities, and plans with still enough energy to get me through an entire day.  After my condition set in, I had to choose what was important  for that day and leave some things unattended, which was a test in patience on my part, since I tended to plan too much on any given day and was determined to get all of it done.  It was important to be happy with what I accomplished for the day.  It became quite simple,  even though at times I made it difficult, thinking that my previous body was still with me.

So for today, I can say that taking the good with the bad is something I understand all too well. Because although others may see fibromyalgia as a bad situation in my life, I can still choose to see it as a blessing.  To others, it may be a burden one carries, and for me, at times, it is a heavy burden, more on my heart than anything else. However,  in a sense it has made me appreciate, even more so, those grand days when I wake up with energy, slight pain, and the ability to enjoy my family and friends. What I saw before in this beautiful life is still there, only slightly different now in the way I am able to enjoy it. It is all the more beautiful.


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