May 12th is Fibromyalgia Awareness Day! This year I plan to attend a walk in New York City to raise money and awareness of this disabling disorder. It is called the Caterpillar Walk and will be held this Saturday. My wonderful son will be accompanying me. I think he is most excited to be going into the the city. He has never been even though we have driven by or stopped on the outskirts numerous times. I am also excited (er… nervous) – (1) I have never driven in NYC before, (2) with my brain fog, I am worried I will get hopelessly lost, (3) I will forget where I parked, (4) what if my feet and legs are in too much pain? (5) what if I am too fatigued to drive home? The worries are endless…
Raising awareness for any illness is important. It helps when we are advocating to legislatures about allocating funds for research and treatment options. It helps when we are raising money for advocacy and research. It helps when trying to explain our symptoms to family and friends, and even strangers.
So, for those of you who are not familiar with fibromyalgia, here is the 30-second elevator speech version:
Fibromyalgia is a chronic pain disorder with a variety of symptoms, the main ones being: fatigue, sleep problems (including insomnia, sleep apnea, non-restorative sleep), cognitive dysfunction (also know as brain fog or fibro fog), stiffness, tenderness. Other symptoms that can occur are depression (because who wouldn’t be depressed sitting around all day in pain?), anxiety, migraines, acid reflux, irritable bowel syndrome, irritable bladder, pelvic pain, temporomandibular joint disorder. Doctors do not know what causes this condition but research has shown it effects the central nervous system, immune system, and the sympathetic/autonomic nervous systems.
In a nutshell, it sucks. As a Guns & Roses songs states, “What we have here is a failure to communicate.” It is like our bodies are out of sync and rebelling against us. This has a profound impact on our daily quality of life.
I have a challenge for all of you who do not have fibromyalgia. Place a clothespin on one of your fingers. Can you last ten minutes with it on? How about an hour? A day? That is only one of the symptoms people with fibromyalgia live with on a constant basis – only we never get to take the clothespin off.
According to statistics recently released by the Center of Disease Control, the number of middle-aged women successfully committing suicide has TRIPLED in the past decade. TRIPLED! How could this happen? My opinion is that women are using more irreversible means than they used to. Men have always had a higher suicide rate than us mere women because they are more likely to use a violent means to their end. Men are more likely to shoot themselves, use illicit drugs for overdose, or use moving vehicles (cars, trains) to do the deed. Women, stereotypically the more passive, tend to slit their wrists (which is really not an effective form of suicide after all) or swallowing pills. The vast variety of medications now available is staggering. We can take our pick and simply overdose on them. Does that mean these drugs should be more restricted or taken off the market completely? NO! It means doctors need to pay more attention to the mental health of their patients. A patient who runs out in tears is a definite warning sign. A patient who leaves the Emergency Room is as much pain as when they walked in is another omen of bad things to come. The most vulnerable time for patients is when they fail to receive adequate care for their severe symptoms (especially chronic pain).
I doubt these patients leave the ER or the doctor’s office thinking, “Hey! Why don’t I show this doctor I mean business and kill myself.” It is not that simple. The CDC estimates that up to 70% of all overdoses are accidental. How could someone possibly kill themselves by accident, right? Image coming home after a frustrating doctor’s appointment. The doctor listens to you complain about the migraine you have had for the past week and gives you a prescription for a new abortive medicine. You are so thrilled you immediately get it filled. But when you take the medicine, you are still in pain a hour later. So you take another pill. You eventually start taking every pill you doctor has ever prescribed you in the hopes that this mother-of-all migraines would simply leave you in peace. By this time, you are groggy and brain fog has set in. You no longer remember what you have taken and how much. What do you think happens next?
In another case, you leave the doctor’s appointment with a script for physical therapy but your back hurts you now. You can’t wait for weeks of PT to help you gradually improve. You want relief now! So you go home and taken a few Tylenol or Aleve. You are still in pain later so you take more. You start off taking 2 or 3 pills at a time. By the end, you are taking a handful at a time but you are in too much pain to monitor what you are doing.
That, my readers, is how someone can accidentally kill themselves without even realizing it until they pass out. It is not a pretty picture.
When I was younger and taking my first steps into adulthood and real-life responsibilities, I had a vision of what my life would be like. It wasn’t a set-in-stone plan with every minute detail laid out. It was a living vision of things I wanted to do – walk down a charming street in Paris, visit Scotland where my ancestors are from, see the Colosseum in Rome, hike in the Swiss Alps, go camping with friends, share my love of playing sports with my children, have two or three children, be a cool grandparent who could actually still do things with her grandkids. However, some things just aren’t to be. Most days, I can live with this. I can focus on the positive things, things I can still do, things I appreciate more because of my illnesses. But then some days… it all hits me like a truck load of bricks, repeatedly. This past Sunday was one of those days. I was at my son’s soccer game watching all the kids running around and playing before the game. The players’ siblings and parents were on the sidelines kicking the ball around, throwing a ball back and forth. Some parents were talking about how much they enjoy coaching the younger kids in a variety of sports. I confess – I am jealous. I always saw myself as the the parent who would volunteer to coach her kids’ sports teams. I would play soccer or basketball in the backyard with them. I would take them down to the park and play tennis with them or roller blade around the neighborhood or ride our bikes together all around town or at the park with the bike paths. There was so much I wanted to do with my children. But I can’t. I don’t dare to even try on the best of days. I have learned I last all of five minutes before the fatigue hits or the pain kicks in. Not only that, but I only have the one child – my pride and joy. My health got in the way of having any more. My husband and I kept waiting for me to get better before having more. Now my son is almost 12 and that ship has sailed…
I watch my son and husband play in the backyard and the guilt and loss of not being able to join them is like a knife in the heart. I know I should be grateful for what I have and what I can do, and I am. But there are the days when the glass is half empty and leaking fast. I am not the person I wanted to be and that hurts more than any physical ailment. Regret is like that itch in the middle of your back that you just can’t seem to reach in order to scratch…