I have put off writing this post. I am embarrassed and afraid. I am embarrassed to admit I don’t have it all together. I am afraid if I ‘let the cat out of the bag’ you will not like me. I am embarrassed to share this side of myself. The side that is frequently in pain. I am afraid of what you will think of me. If I tell you about the painful part of fibromyalgia that I deal with, will you think me weak? A complainer? A whiner? I feel like those things from time to time. Why shouldn’t you think these things of me as well? There are days when I feel like nothing more than a burden. A burden to my husband, my family, my friends, and even to the system! Good lord, I’m a burden to the United States of America! The thought of all of this is beyond embarrassing, it is scary. When I am in this frame of mind I feel like a worthless human being.
The truth. With pain comes suffering and it is often mental with the physical. So I am going to write what I need to write. Here goes nothing…
It’s an ‘FM day’ is code for I’m having a fibromyalgia flare! A flare is when your painful symptoms increase dramatically, usually forcing you to bed. You probably will experience fibrofog and any co-existing symptoms you have will make themselves known in a big way! All these symptoms can occur at the same time or at intervals. Sometimes, it’s just the pain without any of the rest. A flare is painful, debilitating, and frustrating.
The pain from the flare stops you from completing any activity. The fibrofog makes it difficult to remember words, forget about putting a sentence together! The fatigue makes it feel like a workout just getting in and out of bed. Any stimuli are too much: lights are too bright, a sound is too loud, smells are too rotten, touch is too painful. You swear you can feel the blood flowing through your veins and it’s burning you from the inside out. Your heart beats in your ears and it feels like your head is pounding right along with it. You will cry.
I am fully aware I am going to pay to play. If I do ‘A’ then I will suffer ‘B’. It is just that simple. I never know how bad a flare will be or how long it will last. I am pretty good at pushing hard for a day or two when I need to, then the flare will hit. And it will be bad. I usually weigh out my options and decide if I can afford to have a flare. There are times when I know I cannot mentally handle a flare because I get so depressed when I am in pain. I will choose to not do an activity or decline an invitation. There are times when I have planned an activity or outing so I will be incredibly careful the days leading up to the event so I can attend. But I am reminded all too often, a flare can hit at any time, whenever IT pleases.
I am not open to discussing my fibromyalgia flares with my family. Or many of my coexisting health concerns for that matter. First, because I know they no longer want to hear about it. Second, because they no longer want to hear about it! They were all so supportive in the beginning. I was frequently called, driven to doctor appointments, physical therapy appointments, given books and encouraged to get well! But this is a chronic condition. There is no light at the end of the tunnel. The damn tunnel never ends! I really do not blame them. They were there during the first few years that were my worst, I am thankful for that. Besides, I’m sick of me after 20 years of this illness too! But I do miss being able to talk to them about my good and bad days. I miss telling them about my little triumphs and then the devastation that I feel when I get slammed with painful down days. I do miss them! This syndrome has stolen so much time away from us.
There is no hiding this illness for my husband. He lives it with me every day. He copes with it every day, just like I do. He nurses me when I need it, confronts me when I push too much, and comforts me when I cry with pain. I am devastated when I flare because I know it will worry him. It will also make housework, meals, and dog walking his job until I recover. The time we enjoy together ceases to exist until I am through my flare. He is probably more blatantly aware then I am that there will always be another flare…
Holly is my very best friend. I have known her since kindergarten. She used to be a ‘mean girl’ or so I thought. She was a loud tomboy and I was a painfully shy little girly girl. We became best friends one day at a summer party when we were both too young to be drinking alcohol, but did. We both became violently ill and shared a toilet to throw up in! Between throwing up, we talked about why we had never gotten along… I’m serious! We were fast friends after that. (She may remember it differently.) Holly has had to endure so many things in her life, I don’t feel right about sharing them. I talk about her frequently.
Holly has this uncanny ability to just know when I am having a hard time. She lives in Washington and I am in Minnesota but she can call me on the phone and say, “tell me what is going on.” I can never worm my way out of telling her the truth. When she calls and I am not feeling well, she never questions me, she closes our phone call quickly with “call me when you feel better” and “I love you”. If I do not get back to her I suffer Holly’s wrath! Never a good idea! (I’m kidding, Holly, kind of.) Holly is the best kind of friend to have and I am thankful for her presence in my life every day.
In closing, there are no two people who suffer Fibromyalgia Syndrome the same way. Some are merely slowed down by this illness, others, it completely and abruptly stops them in their tracks. Fibromyalgia is a sneaky, deceptive illness. It can tear apart marriages, families, and friends. It can steal your job and your home. There are other invisible illnesses just like this one. There is no reason to judge another human being for any reason in this lifetime, that is for the big guy upstairs to do. There is certainly no reason to judge someone for having a chronic illness. I tend to judge myself much more harshly than you ever could but that doesn’t mean you get a pass!
Everyone has a story they’ve never told.