Things used to be different. I was an active part of my community. I neglected friends and family then, so those active years are not part of the me you know. But those years were real, and I miss them.

Once, I was a regional director for a home party plan. I have videos to remind me of how silly I acted trying to motivate my sales reps and that I strutted around singing, "It’s my party and I’ll sing if I want to" as I encouraged others to sing at our last banquet.

I helped organize a sales lead club that met every Tuesday. I worked with local chambers of commerce to reduce membership fees for independent contractors, then volunteered at two chambers to help increase membership.

I was involved in children’s ministry, in my own church and in the community. I helped organize a group of children’s ministry workers from churches of all denominations in our county who met monthly to exchange ideas and resources.

At my own church, I served as Sunday school superintendent, Sunday school teacher, children’s ministry coordinator, vacation Bible school director, and Christian education director and assistant children’s choir director.

I wrote an adult vacation Bible school curriculum to correspond with the lessons we chose for our children. I served as an adult Sunday school teacher, helped organize a women’s Bible study group, helped bring a Lay Witness weekend to our church, served as president of our church’s women’s group and was active in the local Christian women’s club.

I became a Certified Lay Speaker in the United Methodist Church, and have spoken at seven churches in Florida and Texas and given children’s sermons about three dozen times.

I was active in our home schooling group. I volunteered at our umbrella school at least weekly, helped new home school families "learn the ropes", was a test monitor during achievement tests and organized field trips.

I made and sold crafts at craft shows, and published a monthly newsletter about being frugal.

My writings appeared all on Christian women’s web sites, home school sites, writing sites, craft sites.

That was then and this is now. Once I played hopscotch with the girls in our apartment complex. Now I often have trouble even getting out of bed.

Fibromyalgia is my constant companion, a chronic illness that doctors don’t understand and many don’t take seriously.

As I searched the Internet to help me explain the symptoms and ramifications of fibro, I stumbled upon a site from the United Kingdom and found this: "Here’s a sample test you can do yourself. With your thumb and all four fingers, reach across your chest and firmly squeeze the back top of your shoulder muscle near the base of your neck. Squeeze modestly, but until it hurts…and then squeeze a bit more. Maintain that pressure. Now, consider living with that sensation not just in your shoulder, but throughout your entire body, day after day, year after year. If you are able to do that, you will have some understanding of the quality of life of an individual who must endure the symptoms of fibromyalgia." From http://www.ukfibromyalgia.com

That partially explains my pains, but not entirely. Fibro pain can be stabbing or throbbing, on one side now and on the other side later. Sometimes I feel numb, sometimes like my limbs are on fire. Just being in my own skin can be uncomfortable, and being touched downright painful!

Having fibromyalgia is like having the flu – all the time! Every muscle shouts in pain and you feel as though someone has unplugged your power supply.

Chronic fatigue often goes hand-in-hand with fibromyalgia, as do sleep disorders, irritable bowl, and headaches. Other symptoms include: depression, chest pain, morning stiffness, memory impairment, numbness, tingling, muscle twitching, irritable bladder, feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination. Patients are often sensitive to odors, loud noises, bright lights, even their own medications.

I don’t experience all symptoms daily, but I do have each of them sometimes. I never know which symptoms will appear. As a fibro sufferer, I must discover which things trigger pains or responses. Even that isn’t fool-proof. There are aggravating factors, including changes in weather, drafts, infections, allergies, hormonal fluctuations, stress, anxiety and over-exertion. Any of these can contribute to symptom flare-ups.

How did I go from being so active to one who wants stay in bed? That’s a great question and one that research is still researching.

For me, it all probably started with injuries – my back injury in 1997, whiplash in 2000 and my knee injury in 2002. Trauma and stress trigger fibromyalgia, but they don’t cause it. According to Fibromyalgia Network, these triggers "may awaken an underlying physiological abnormality that is already present."

The treatments I received for my back injury might have triggered something. The shots – some combination of steroids and cortisone – did affect my system. My skin was thinned permanently. My hands look like they belong on an old woman instead of someone in her youthful 50’s! Just bumping my hands can cause them to bruise and bleed.

Maybe being exposed to latex – and unknowingly being allergic or intolerant to it – was a trigger. I worked at the newspaper during the anthrax scare, and wearing latex gloves to open the mail made my fingertips bleed. My hands haven’t been the same since!

The heart catheterization I had and the myriad of tests for digestive disorders were probably not necessary. Any muscle can spasm with fibromyalgia, so my chest and stomach pains are probably nothing more than my fibro reacting in a different way. But who knew?

Having a doctor who acknowledges fibromyalgia as a real and chronic malady helps. But often the specialists aren’t aware that the symptoms could be related to fibromyalgia. A patient has to stay informed, and that’s tough when you’re in constant pain or so tired that you’d like to awaken when they’ve found either a cure or something great to treat the symptoms.

The rash on my hands and feet is the only malady cannot be attributed to fibromyalgia, if it’s been diagnosed properly. Before the rash appeared there was just pain, and doctors considered carprel tunnel and arthritis. Once the rash appeared, the diagnosis was palmamlantar pustulosis. That’s a viral skin condition that appears on hands and feet and has no cure. Thankfully, it only flares up when my fibromyalgia symptoms are in check.

What do I want or need from you? Not much, actually. Just keep loving me and try to understand that when I say I can’t do something, I really can’t. Just because I did something yesterday doesn’t mean I can do it today. Refusing an activity today doesn’t mean I won’t try it tomorrow.

Sometimes the pain is so bad that I have to take a pain medication that can leave me in a stupor for days. Sometimes my stomach hurts so badly that the only thing I can eat is yogurt. I won’t mind eating something bland while you eat something spicey, if I was able to get out of bed in the first place. Or if I’m not a total "space cadet" from "fibro fog."

Social Security Administration has acknowledged that I have these numerous maladies; they also still believe I can work. And so I try sometimes to do just that.

I miss the old me, but that doesn’t mean that I’m ready to give up living. Heck no. I’m just trying to get used to living in a new way. Every day.