Fibro and my disability

There comes a time in some lives when, despite all our desires and wishes, we are overwhelmed with an ailment and find it impossible to continue to be productive in the working world. Most of us have struggled with our ailments for years before coming to this point. We have followed doctors advice to the letter, taken our pills/ meds religiously, worked through the pain, the downright AGONY sometimes, of this ailment. We have exercised, lost weight, completely changed eating habits… EVERYTHING possible to stop the suffering.

We have been called every name in the book by people we didn’t even know because we appeared “normal” yet there was something underlying that made us slower, more forgetful, more sluggish, angry, depressed, slow…. anything BUT normal. We became more and more withdrawn in order to keep the stares, the looks of disgust, the harsh unnecessary words and downright nastiness from entering our already crumbling worlds. We withdrew either into ourselves or our homes. We became distant, aloof, building walls to protect the only thing we could, our inner psyche. We shut ourselves down and the disease overwhelmed us, laying to waste the lives we built. Some families parted ways, some of us succumbed to the waves of dispair and drowned. We self medicated ourselves, sometimes to death, having exhausted every known theory. Some of us took our lives because the pain was too much to bear. People don’t die from fibromyalgia. This is what we’ve heard from the doctors, the media, the government but who counts suicide as a direct symptom of a disease? No one.

Those that think Fibromyalgia isn’t a “real” disease should be placed in a sack and beaten with sticks over their entire body, made to drink shots till they puke and given a sedative, only enough to make them sleepy and then have them try to “work through it” That’s the way this disease makes some of us feel. Like we have been beaten over our entire body, have a MASSIVE hangover and with such exhaustion that lifting your arms is a feat of Olympic merit. This is not some made up, mass hysteria, mental disease. It’s REAL and needs more attention, more research and more COMPASSION.

MY STORY

I have personally suffered from this disorder for 8 years. I can tell you the exact date it started. I was diagnosed with it 5 years ago after being told it wasn’t real, the pain was all mental. I was told that I was lazy, worthless, fat, stupid… everything was because I had a moral defect. People told my husband that he should leave me because I was “taking advantage” of his kindness. I was told that I could have my children taken from me because I couldn’t POSSIBLY parent from the couch or bed. What kind of mother ALLOWS her children to witness her laziness? No one understood that I was doing the best I could. That I needed HELP, not dismissal.

When I hit bottom, my sons were 4 and 6. My husband and I were trying to get me a nurse to come to the house a couple of times a week to help me bathe and other things. Mike had completely taken over care of the children and all I could do was lay in bed and sleep or cry. I was in pain all the time, excruciating pain, and no one could help me. I began seeing a new doctor, the fifth in two years. His first priority was pain management, THEN we would find out WHY I was hurting. We discovered I had Fibromyalgia, something I’d never even heard of till then. He referred me to a rhematologist and this woman was a Godsend. She confirmed the diagnosis and started treating me. FINALLY I was validated after three years of thinking I was crazy. She said the West Nile virus I’d contracted 3 years before along with the meningitis and emergency gallbladder surgery (all in a three-day period) was probably when the disorder started. my pain system became overloaded and hypersensitive. Somehow, my brain infection was probably to blame. I had to laugh. When she asked what was so funny, I replied “So it IS all in my head! My mother in law was right!” We started me on meds and exercises. It’s been a journey I wouldn’t wish on my worst enemy.

Now recovery, right?

Well, it’s been 8 years, four since diagnosis and I’m still suffering. Not as much or as often now as I had been. I think my brain might be trying to recover but it’s a long trek. Days, like today, remind me that I’m NOT recovered and may never be but, I’m better. Sometimes. Maybe….  I only take it one day at a time now. We’ll see what tomorrow holds.

For now…. I’m Taking a Nap!

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