Today is a good day. Yesterday, I felt like I was going to die. The day before that, I don’t much remember thanks to the varying degrees of brain fog that constantly surround me. Fibro is not your stereotypical illness. It doesn’t present the same way to every person, and if that wasn’t enough, it most often is misdiagnosed as a myriad of other conditions. It’s only by trial and error that people get diagnosed and diagnosis for some could take years. There are things I wish that people knew about Fibromyalgia because it would make life easier and I wouldn’t have to keep up the façade that all is well when it isn’t.
I Am Always In Pain
There are days when I can get out of bed and do everything I need to do with only minor obstruction. The pain is at what I like to call my baseline level. It’s the level of pain that’s probably a five on the pain scale for most people, but for me, it’s my 2. It’s annoying, but I’m used to it.
Flare-Ups Make Me Want To Crawl Into A Hole And Die
I dared to go to my sons’ first baseball practice. The punishment for that was a King Kong-sized flare up that lasted for two days. A flare-up occurs when my body has said enough, and all my symptoms become magnified. For some people, this could include having more symptoms than they usually experience every day. When I flare up my brain fog can get so bad that I don’t even know where I am. I can barely walk and usually wind up stumbling around and falling. The pain is at a level 10, and I’m just praying for death or release. When release comes, the pain might go down to a level 5, but because of how bad you felt the previous day, it feels like a 2.
There Is No Cure
I can’t take a pill and expect it all to go away. Most of the pills available today mask some of the symptoms but not all of them and come with so many side effects that you wonder if its worth it. Diet and exercise can help, but again, it will never go away. Knowing, from the day of my diagnosis that how I feel now if the way that I’m going to feel for the rest of my life is the heaviest burden to carry. It is my albatross. I will never be who I was again.
I’m In Mourning
Before Fibromyalgia I was a great many things. I was a runner, rode bikes with my children, walked everywhere, played sports, I never sat still. I loved to go on road trips, sitting in the car all day to wind up at the largest ball of twine was one of life’s greatest pleasures. Most days, I can barely walk from my driveway to my front door. My body is wasting away as I struggle to keep it functioning. I miss the old me but she’s gone, and I’m morning the loss of her because I know she’ll never return.
I Don’t Look Sick But I Do (Look Closer)
Fibromyalgia is called an invisible illness, the vast majority of the symptoms I experience aren’t visible, but if you look closer, they are. I wince every time I have to walk during a flare because my feet ache and my legs are on fire. It feels like someone baked tiny needles in the oven and then stuck each one into my legs. I’m unsteady on my feet, so I walk slower than your average 39-year-old. My face is usually very pale and bloated from the pain and the medication for it. I look tired, and I usually have bags under my eyes for weeks. On my worst days, my speech slurs, and I will forget words, so I won’t talk as much as I normally do because I’m embarrassed. Email and text have become my favorite way of communicating because I don’t have to speak.
I Hide When I’m Sick, But That’s When I Need You The Most
I hide myself away when I’m in the midst of a flare-up. I think I’m doing you a favor not to have to look at me or deal with me. I know it’s hard to see someone you love suffering and are powerless to change it, so I retreat. It’s easier for me. Unfortunately, that’s precisely the time I need you the most. I need a hug, even though it will hurt. I need to feel like I’m still important and relevant. This disease has already made me feel useless and powerless to control even the most basic of things. Being trapped in my bedroom while life goes on around me makes me feel unworthy of existence.
I Feel Like I’m Just Existing And Not Living
It’s hard finding ways to cope with Fibro and still live a normal life. I’ve had to accept that there are some things I’m not able to do anymore. It’s difficult to come to terms with this because I am a wife and a mother. Children are resilient, and they will find other ways to entertain themselves when you aren’t feeling up to the task. It hurts being left behind because they have become used to the phrase, “I can’t do it,” because I need to preserve what little energy I have left for laundry or making dinner.
I dared to play in the snow with my children and that night and into the next day, I could barely walk. I knew in advance that I was going to pay for it, but I did it anyway. That is the line I will walk for the rest of my life. I go back and forth between living and sitting on the sidelines always measuring, how badly do I want to do this versus how much I’ll have to suffer for it.
I Need Help But I Don’t Want To Ask For It
In the beginning, everyone was eager to help me. After a while, I noticed their offers of help seemed to disappear. Maybe they didn’t know that this was a life sentence, that it wasn’t going to be a situation where they could bring over meals for a few weeks, and it would restore me to my former glory. I’m not angry with them. I know how hard it is to have to constantly take care of someone who should be able to do it themselves. It gets old. It gets hard, and eventually, it wears a person down. I try to do as much as I can for myself because it’s hard to ask your partner who has already taken over your daily tasks to add on caring for your needs as well. I don’t want to ask for help, but sometimes, I have to swallow my pride and ask for it. The hardest things are the most embarrassing like changing my clothes or going to the bathroom. The worst is when people sigh when you ask for help, they believe that I’m just asking for assistance because I don’t want to do it for myself. Believe me; I would rather not ask you to help me walk to the bathroom. Some days, I’ll roll the dice and hope that if I fall, I don’t break something.
I Am Lonely
Chronic pain forces you to become an island. I constantly forgo meeting up with friends or doing anything fun because I’m scared of how I will feel the next day. I wish that my friends would visit me and not make demands that we have to do stuff. I have to reserve my energy for my family and my responsibilities. When I do go out, even if it’s just to Target for a few things, I find myself talking to strangers. I never talked to strangers before. But I’m so lonely, so starved for human connection that I strike up a conversation about the price of milk and eggs.
I Am Scared
Pain and depression don’t mix, and one often feeds the other like a ravenous dog. I know there will come a day when the pain becomes too much for me to handle. The depression I feel over my diminished abilities will become too much, and I am fearful that I will succumb to it. I don’t want to; I want to fight. And I do fight, every day. I do everything I can to keep my spirits up and focused on something other than the pain. But as my flares become more frequent and last longer, I can’t help but ask the question what will happen when I can’t take it any longer? I try not to linger in that place too long. I push the fear aside and move forward, but it’s always there waiting for the pain to bring it out into the light.