I challenged a group of writers with chronic illnesses and chronic pain to write a letter to friends and family explaining their maladies. But I procrastinated about finishing my own letter, partly because “I’ll do that tomorrow" seems to be a part of my life now and partly because I don’t always understand what’s happening to my mind and body myself.
Things used to be so different. I used to be an active part of my community. That was when I sorely neglected family and old friends, so those active years are not part of the me you know. But those years were real, and I miss them horribly sometimes.
Once, I was a regional director for a home party plan. I have videos to remind me of how silly I acted as part of my drive to motivate my sales representatives. In my last year with House of Lloyd, I was an honored guest at all of the sales rallies in my region and spoke at several of them. I introduced my sales reps to karaoke at our last annual sales recognition banquet. I have video proof that I strutted around the room singing, “It’s my party and I’ll sing if I want to" as I tried to encourage others to get up and sing.
I helped create and organize a sales lead club that met for breakfast every Tuesday morning. I urged other direct sales managers to get together each month to exchange ideas. And I worked with local chambers of commerce to have a reduced membership price for those of us who were independent contractors for such sales organizations, then volunteered at two local chambers to help increase membership.
I was involved in children’s ministry, not only in my own church but also in the community at large. I helped create and organize a group of children’s ministry workers and volunteers 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 entire adult vacation Bible school curriculum one year to correspond with the lessons we chose for our children. I also 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. Being certified meant that I could speak in churches other than just my own. And I have! I’ve had the opportunity to speak at seven churches in Florida and Texas during regular services. I was asked to read Scripture in one church for months on end because “my speaking voice was so clear and I obviously loved reading God’s word aloud, " and I have given children’s sermons about three dozen times.
In Florida, I was active in our local home schooling group. I volunteered at our umbrella school at least weekly. I helped new home school families “learn the ropes. " I was a test monitor during achievement tests and organized field trips.
I made and sold crafts at craft shows all over Florida, and published and sold a monthly newsletter about being thrifty (not cheap!). In it’s prime, the newsletter had only 50 regular subscribers, but I usually sold 200 copies when I went to craft shows.
My writings appeared all over the Internet – on Christian women’s sites, home school sites, writing sites, craft sites.
But that was then and this is now, and something happened in the meantime. I used to play hopscotch with the girls in our apartment complex in Texas. Now I have trouble even getting out of bed most mornings.
Fibromyalgia is my constant companion now, a chronic illness that even most doctors don’t understand and many don’t recognize as something to take seriously.
As I searched the Internet for sites that would help me explain the symptoms and ramifications of fibromyalgia, I stumbled upon a site from the United Kingdom. The home page included this quote:
"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. "
That does partially explain the pain that I deal with everyday, but not entirely. Fibromyalgia pain can be stabbing or throbbing. The pains can be on one side today and on the other side tomorrow. Sometimes I just feel numb. Other times I feel as if my limbs are on fire. Sometimes, just being in my own skin is uncomfortable. Being touched can be downright painful! Excruciatingly painful.
Having fibromyalgia is much like having the flu – all the time! Every muscle in your body shouts out in pain and you feel devoid of energy as though someone has unplugged your power supply.
Chronic fatigue often goes hand-in-hand with fibromyalgia, as do sleep disorders, irritable bowl syndrome, and chronic headaches. Other symptoms include: depression, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications that they are prescribed.
Although I don’t experience all of these symptoms each day, I do have each of them sometimes. I just never know which symptoms will appear. As a fibromyalgia sufferer, it’s up to me to figure out which things might trigger certain pains or responses. But even that isn’t foolproof. There are many aggravating factors, including changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations, stress, anxiety and over-exertion. Any of these can and do contribute to symptom flare-ups.
How did I go from being an active part of society to one who would just as soon stay in bed? That’s a great question and one that research is still trying to discover.
For me, it all probably started with injuries – first my back injury in 1997, then the car accident in 2000 when I really did experience whiplash and finally in 2003 when I injured my knee. Trauma and stress seem to be one of the triggers for fibromyalgia. But they don’t cause it. According to Fibromyalgia Network, these triggers “may awaken an underlying physiological abnormality that is already present. "
It could be that the pain management treatments I received for my back injury triggered something. The shots I received – some combination of steroids and cortisone – did affect my system horribly. My skin was thinned permanently, so that my hands look like they belong on an 80-year-old woman instead of someone in her youthful 50’s! Just bumping my hands can cause them to bruise and bleed.
Or, it could be that being exposed to latex – and unknowingly being allergic or intolerant to it – could have been my trigger. I worked at the newspaper during the anthrax scare, and just ten minutes of wearing latex gloves to open the news room mail made each of my fingertips bleed. My hands haven’t been the same since!
The heart catheterization I went through and the myriad of tests for digestive disorders were probably not necessary. Any muscle can spasm with fibromyalgia, so my chest pains and stomach pains are probably nothing more than my fibro reacting in a different way. But who knew?
Having a doctor that acknowledges fibromyalgia as a real and chronic malady helps. But often the specialists aren’t aware that the symptoms could be related to fibromyalgia. It’s really up to patients to stay informed. And that’s a tough job when you’re in constant pain or feeling so tired that you’d just like to be the next Rip Van Winkle and awaken when they’ve found either a cure or something wonderful to treat the symptoms.
The rash on my hands and feet seems to be the only malady I have that cannot be attributed to fibromyalgia. That is, 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 that has no cure. Thankfully, it only really flares up when my fibromyalgia symptoms seem to be in check.
What do I want or need from you? Not much, actually. Just love 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. And refusing an activity today doesn’t mean I won’t try it tomorrow.
Try to understand that sometimes the pain is so bad that I have to resort to taking a pain medication that can leave me in a stupor for days. And that sometimes my stomach hurts so badly that the only thing I can eat is yogurt or cottage cheese. Just remember that I don’t mind eating something bland while you eat something spicy. That is, if I was able to get out of bed in the first place. Or if I’m not a total “space cadet" from what they call “fibro fog. "
Last year, I was even able to work for about six weeks. I did not last long, since being on my feet caused my sacroiliac joint to dysfunction. But while the Social Security Administration has acknowledged that I have these numerous maladies, they also still believe I can work. And so I have tried 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.
Blessings and love, Kenzie
Marilyn Mackenzie has been writing about home, family, faith and nature for over 40 years. She is an author on http://www.Writing.Com which is a site for Creative Writers . Her portfolio can be found at http://www.Writing.Com/authors/kenzie.