I think many, if not most, of the people reading this can relate. We’re all tired on some level. Physically, emotionally, spiritually; we’re tired. We’re tired of money problems, we’re tired of negative news, we’re tired of nothing but outrage, we’re tired of having every aspect of our lives be monitored, we’re just tired.
I personally like the “tired” more than I like the words “exhausted,” “fatigued,” “beat,” or “weary.” I don’t need to earn “tired.” I don’t need to compete with others who have other jobs or are older than me for “tired.” I don’t need to explain “tired.” “Tired” is well understood, at least among the people I know. It means, “I’m overwhelmed, anxious, I don’t want to go to work, and everything hurts, but I can’t get into it right now because we’re at work, or I don’t want to burden you, or it’s too much for me to talk about, or I’ve been talking about it every day for two weeks and by now you know what I mean.”
I’m tired because I have fibromyalgia.
“What is that?” Some of you are asking. It’s very complicated and has a lot of components, but to start out with, according to MayoClinic, it’s a disorder that is made of serious musculoskeletal pain, physical exhaustion, sleep problems, and mood issues. The pain usually occurs on both sides of the body and in addition to muscle pain, the person also has a lot of joint pain. Everyone experiences chronic pain issues a little differently. Almost all of my pain is concentrated in my legs, though it does spread to my lower back and my hands/wrists if I use them more than usual.
The thing about fibromyalgia is that it is a diagnosis of ruling out other diagnoses. I have also been diagnosed with polyarthralgia and tendonitis. I honestly don’t know if it’s a combination of them or if the diagnosis is wrong or if tests will show something completely different. But as of now, this is what it is.
I’m tired all the time. I’m 24 and have to use a cane when I walk anywhere longer than 30 minutes. I have to hire a dog walker to take my dog on better walks than I can and I have a hard time playing with him. I cannot be with my friends for longer than a couple hours because any longer and I am exhausted. Chores pile up because everything hurts all the time and just thinking about washing dishes makes me want to cry. I’m collecting vitamin bottles and medications like they’re Pokémon. I’m extremely sensitive to the cold and winter is coming. Many times a day I just stand there and stare into space, thinking of nothing and looking at nothing. I need directions repeated to me over and over again. My family, with the best of intentions, keeps telling me that if I sleep enough and eat well enough and do the right exercises, I’ll be cured, and I have to keep reminding them that chronic pain is not something you cure. You just learn to live with it. You learn to live around it.
And, for the most part, I have learned to live with it. It’s very frustrating, but I have. We did hire a dog walker, and since she got a job, we’ll probably have to hire another one. My friends are nothing but supportive and are totally understanding when plans change, and I either cannot go or have to leave early or I end up falling asleep while they’re over and they’re 90% of the reason why I am not totally insane. My fiancé takes care of most of the household stuff on her days off of work and does most of the cooking. We invested in a lot of compression items and they really help. I own too many insoles for my shoes to count. We support each other to have healthier diets, more sleep, and better exercise. We make it work.
Chronic pain is annoying and frustrating and sad but survivable with supportive people around you.
But the worst part I’d personally say is work, or lack thereof. I cannot speak for anyone else who has mood issues and fibromyalgia, but applying for jobs is terrifying. Managers do not like hiring disabled people. Every time I ask about accommodations during an interview, I never get a call back. I know it’s illegal to discriminate against disabled people. So do they. I don’t think it’ll surprise many people when I tell you they don’t care. The one time I might have gotten a job I really wanted I had to turn it down because I was in so much pain and could not handle what the job entailed. I cannot work retail, food service, or any driving job without downing two red bulls and five Tylenol every work day. My fiancé’s a nurse and I think she’d have a heart attack seeing me do that.
Being trapped in the house and not being able to find a job causes a huge amount of depression, especially as winter is coming. For those wondering, the American Disabilities Act does not have a definition for disability but a certain set of very vague criteria. According to the criteria, chronic pain is a disability. I do not meet the standards to apply.
I don’t know what I hope to accomplish by writing this. I got this idea by researching good jobs for people with fibromyalgia. I’m getting tired of screaming into a void. I’m getting tired of slowly making my way around the apartment, exhausted, not eating because it takes too much effort and staring at my email rejection after rejection after rejection.
“Fibromyalgia.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 11 Aug. 2017, www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780.
Wray, Amanda. “Tips for Using the ADA.” National Fibromyalgia & Chronic Pain Association, NFMCPA, 8 Apr. 2016, fibroandpain.org/tips-of-experience/435-tips-for-using-the-ada.