I am NOT my Fibromyalgia

There are many memorable days in my life. A few of those unforgettable days are the day I learned I was pregnant for the first time, the birth of my first son, the birth of my youngest son, the day my divorce was final, the day my dad died, the day my mom died, the day I met the love of my life, my grandson’s arrival into this world, the first time I held him… you get the point. There were highs and lows, but each event changed me profoundly. In the undercurrent of the ebb and flow of the tide of my life lurked an invisible illness. a chronic illness I had never heard of.

However, I will never forget the day I learned this new term. I had be to see my doctor and had several tests. the pain I was experiencing was increasing and the was only one of many issues I was having. I needed answers. I was prepared to fight  whatever diagnosis I was given. Then, my doctor came in and stated, “I have good news and I have bad news. The good news is, you don’t have cancer. The bad news is, you have Fibromyalgia and there is no cure.’ I looked at her with disbelief and asked, “What now?”
I simply could not accept that I had to live with searing pain, burning skin, muscle spasms, brain fog, insomnia, and chronic headaches. For crying out loud, it was 2008! She said, “Go home. Get some rest, there is nothing to do.” I fired her and got a new doctor.

I was diagnosed about ten years ago, but in reality, I have had this chronic illness most of my life. As a young child I begun to learn coping mechanisms to deal with the abundance of “gifts” that come along with Fibromyalgia. It hurt to run and play with the other children. It hurt to sit on the hard tile floor at school with my legs crossed. It hurt to sit still for any length of time. Yard work and other chores would cause days of pain and sometimes trigger migraines. I learned to keep to myself and always smile. It is amazing what a smile will hide!

As the years progress, people around me joke that it’s because I am old. No. I’m aging, yes, but I am not that old! The Fibro has progressed along with my life experience. I have been called lazy, stupid, a hypochondriac, and a few other unpleasant things too. Truth is, I’m not lazy. I push myself to muscle failure and then some each day just to appear “normal”. I’m not stupid. In fact, I’m pretty darn smart. I have had to be order to live with this chronic illness, hold down a full-time job, raise a family and be my mom’s hospice provider until the end of her life. I am certainly no hypochondriac! I am not seeking sympathy. I want to work. I want to be an important part of my family, I want to enjoy life. I want to be useful, contribute and a functioning member of my little corner of the world.

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Each morning is filled with hope and promise, a clean slate! That is what I have heard. That is not my reality. My moment of wakefulness is that precise moment the medication gives up and my body wins. Each morning for me begins with the shock of a severe wave of pain. It slices through my peaceful dreams and drags me into the agony of my reality.

Once I am orientated to this harsh, unforgiving place called wakefulness, I take my morning meds and wait. Wait for them to ease the pain and steal pieces of my brain. This, you see, is the only way I can get out of bed, stand and participate in Life. Makes me sound like a junkie, doesn’t it? Not so! I only take HALF of what is prescribed so I can continue to work, be productive.

You see, my job is taking care of others. But that isn’t the point here. What IS important, I am gainfully employed. I work a full 40, sometimes more. So many of us with chronic illness do. My fibromyalgia, chronic pain, chronic fatigue, migraine, restless leg syndrome, Lupus, history of TIA and seizure have isolated me. These are my demons. I have had these traveling companions since childhood.

I missed my son’s wedding because I couldn’t make the three hour journey to where it was. I WANTED to, but my demons had other plans. I have lost countless friends because I had to hibernate to make my companions leave me alone. I lost a job I had had for 11 years because of the battle that rages inside me between the meds and my life-long “friends”.

The battle is real. As a child I watched the world around me and wondered why the other kids LIKED to run. Running=pain, why would anyone WANT that? Now I’m in my late 40’s. These demons have grown up too, and I understand. I was singled out. What the “normal” world can’t grasp is, WE did not ASK for this. We are NOT junkies, pill-heads, losers or disposable. We deserve a life too.

Now You See Me, Now You Don’t

via Daily Prompt: Suddenly

It had been several years since Mom came to live with me. I’m still not sure why it hit me so hard. I new it was the only eventual outcome. She left the same way she arrived.

I’ll never forget, it was a steamy Saturday afternoon in August. I had invited Mom to my house for lunch and a game of cards. As the lazy day dragged on, the kids dropped by. It was so nice to have the house full of family and friends. Mom ended up spending the night.

As we enjoyed our morning coffee the next day, Mom looked over her cup and smiled at me. She told she enjoyed being with everyone so much that there was no reason to go back to her condo. She never did.

I was blessed to have my mother with me the last seven years of her life. Sudden is not the term to use when describing the merciless ravages of Alzheimer’s. It’s more like watching paint dry while having hot water poured over a sunburn. Slow progress, uncomfortable at best, but mostly downright painful.

For one thing, no one told me she would be cognizant of her loss of reality. However, that is a story for another day. I will say the progression was painfully slow for both of us, until July of 2016.

After each horrifying new milestone, we would readjust and settle into a new routine. After Mom had become non-verbal we had plodded steadily along for about six weeks when it happened.

I came home from work an hour late that Thursday evening. It was July. I can still feel how hot it was when I got out of the car. The cool air inside the house was a relief. After fixing her supper, I went into Mom’s room. As I sat at the bedside something seemed different. I couldn’t quite put my finger on it, but I was shaken to the very core. Several attempts of offering spoonfuls of protein laced oatmeal yielded no cooperation.  Out of frustration, I decided to take a shower, try again later.

Later, as I entered her room the air still seemed different, somehow wrong. I approached her bed, my mother looked directly at me and rolled her eyes. Mom then turned her face away from me. Just like that, she was gone. In mere moments my Mom left me. My whole life has changed. Nothing, absolutely nothing will ever feel the same again.

No Place to Go But Up

I feel like my life is a horribly written book. Each chapter feels like it happened to someone else. It’s strange trying remember some things. You know, the way that a certain scent or song will transport you back in time? Well, for me there are so many things now that don’t feel real or way too real. The painful part for me, the part that brings it all into focus is I don’t have anyone left in my life that knows my history. Absolutely everyone who began my life’s journey with me have either crossed the rainbow bridge or abandoned me along the way.

Most of the time I just pretend it all happened in a movie I saw a long time ago. Sometimes when I hear people talking about their history, or how they grew up, I don’t say anything because it’s just not worth the energy to explain. However, there are so many stories crammed in my head now that I believe it’s time to share them.