I know that I talk about myself a lot in relation to Fibromyalgia, but I am something of a self-taught expert. I had a crash course that was a surprise gift, and it gives my experience value if I can help someone else. After all, I know me better than anyone, if I was my best friend I would be thrilled to have me for a resource. I want you all to know that I do not feel sorry for myself and I hope it doesn’t come off that way, I am just being painfully honest.
When I first got sick, for lack of a better term, I had been walking an average of 3 miles a day, a mile to work, from work to home, and walks throughout the day on my breaks, as well as lifting weights at least 3 days a week in the employee gym on my lunch break. I had heard of Fibro, I thought it was chronic pain and exhaustion, and with my bad hip I certainly understand chronic pain. I went from being fairly active to having to use a wheelchair to get to the ER in a day. I remember crawling up the steps to go to the bathroom, having to stop halfway up to nap, and just crying, not knowing what was wrong with me. I couldn’t stand up long enough to take a shower or get out of the bathtub. I could walk about 10 feet on a good day without falling, usually more like 5 feet, my face erupted in open sores, half my hair fell out, going to the bathroom wore me out so much I needed a nap, I could not dress myself without help, I slept all the time and never felt rested, I had migraines, could not stand loud noise or bright light, my hands shook so much I could barely hold a pen or make a phone call, I honestly thought I was dying. My daughter looked up my symptoms online and came up with drug intoxication, stroke, Valley Fever, brain tumor, or MS. I knew it wasn’t drugs, but that didn’t help me. The first ER doctor I saw totally dismissed me, said I was dehydrated, I burst into tears, this was 3 months after I quit soda, I drank water all day every day, still do. My son drove across my yard to take me to the ER that day, I couldn’t walk from the house to the garage, he pushed me down the hall in a wheelchair, I could not even hold a pen to sign myself in, and she made me feel horrible, I still cry thinking about it. Two days later I had my mom take me to a different ER, again in a wheelchair. I had lots of tests, an MRI, and a doctor who listened, big difference. I told him, “Do not dismiss me, last Friday I walked a mile to work and spent 45 minutes in the gym. Today I cannot walk from this bed to the bathroom. There is honestly something wrong with me,” and I started to cry again, this doctor recommended me to a neurologist and took me off work until they figured out what was wrong with me, and the last Fibro article was all about that.
In order to love and support someone with the disease you have to understand the disease process. We know we are missing important things, we know that we should go to the store, or take a shower, or show up on time for a family gathering, we just honestly can’t a lot of the time. We are not lazy, we are not attention seekers, drug seekers, or looking for an excuse to be irresponsible. There are days when I literally cannot get out of bed and have to crawl to the bathroom, on my elbows, as my hands do not always function. There are times when typing on the keyboard feels like I am grinding my fingers into broken glass. There are times that my whole body hurts so much I play games on the computer for an hour at a time, trying to distract myself, and worst of all, I think, there are times when I am paying attention, and really listening, and part of my brain just… gets lost. I can really be listening and have no idea what you just said, I have to write everything down. I can remember my best friend’s phone number from high school, but I can’t tell you the 3 things I need from the store. It’s hard for us to make concrete plans because we never know how we will feel on a given day. Weather changes affect us, as do hormonal fluctuations, stress, even feeling bad about not being sure if we can do something, that’s part of why anxiety is always an issue with FM.
I do get frustrated sometimes, I think the hardest ones to handle are other people with the disease who do not take any meds or supplements and brag about how well they function. That’s part of what makes the disease hard to understand, there are different levels. I take medication to help with brain fog, anxiety, muscle spasms, muscle relaxers, and pain pills. I take supplements to protect my stomach from the pills, to help my hair stay on my head, to help with the skin issues, to help with energy, and to counteract the damage from the pain medications. I take 15 pills in the morning, including a multi-vitamin, plus pain medicine, 6 at lunch, and 8 before bed, I take hydrocodone three times a day for pain, plus ibuprofen, it’s a lot of meds. I now walk with a cane, between my hip going out and the vertigo it’s much safer, I fell last summer into my computer and it was an expensive fix. My hair grew back, very well, and I try to follow a diet from Mayo Clinic recommended for people with FM, which basically eliminates processed and artificial foods, corn syrup, and adds healthy whole foods.
My daughter lives with me and helps me to get dressed, cooks for me on days I can’t get out of bed, carries the heavy stuff, and helps me to focus on what matters. She does not always understand, but she is always there, and is totally non-judgmental. My son still gets upset when he sees all my pill bottles, but without them I am just not functional, I have gotten rid of 2 medications I no longer need, it’s only been a year since I got sick, a year since I had a normal life, with a job I loved, friends, a social life… amazing.
Being able to write has saved me, in every way, I have always written, but my audience was much smaller. I am thankful every day that I have this for an outlet, for a reason to get out of bed, that, even though I am no longer working as a nurse, I am still trying to help people, that’s all I have ever wanted. Love, peace, and hugs…
