I can’t remember the last time I woke up feeling refreshed, like I slept well. I know it was before I become an adult, somewhere in middle or high school. I have been in various stages of pain for a long time. I remember sitting in class in high school and not being able to sit still for the entire class without feeling achy all over. I was diagnosed with fibromyalgia and migraines when I was 18, and since then I have had good days and bad days but not pain free days.
It is hard to explain how it feels to always feel sick and be in pain to someone that is healthy. With fibromyalgia it is like having that achy feeling all over you get with the flu all the time. My pain doesn’t define me, but it does consume me. I think about it all the time because I am always in some kind of pain. On my good days I am low like a 1 or a 2; bad days a 7 or higher on the pain scale. I worry about my future and how my body will handle aging, taking meds for so long, becoming immune to the meds I take, etc.
It is hard to live in a broken body every single day. To know it isn’t going to get better because they don’t know why I am broken. To have to continue to get new and different symptoms. To always worry that the tests will finally come back telling me this time they have figured out what’s wrong and it’s bad. Or to have the tests come back normal again, and they don’t know what’s wrong but they do know something is wrong. I have learned there are a lot of conditions that can’t be proven with a test, but that doesn’t mean that are not very real. Medical science just has yet to catch up with all the things a body can do, good and bad.
I have been called a hypochondriac many times through out my life. It is a very upsetting thing to hear because hypochondriacs think they have illness they actually don’t have. It makes it feel like those people don’t think I am really sick or in pain. I went in to every single one of my appointments when I was first getting diagnosed praying I wouldn’t have anything. I still go in hoping that any new symptoms are just part of my fibromyalgia. Like a few years ago when I discovered the intense pain I have in my neck was actually a serious slipped disc, that may require surgery to fix in the future. I always hope there will be some simple explanation to why I am in so much pain.
One of the hardest things about having an invisible illness is that on the outside you look fine, but on the inside you are a mess. There are so many conditions that fall under the invisible illness name. From pain conditions to mental health issues. There are so many people fighting to wake up and get through the day. The lack of understanding with these types of conditions makes it so much harder. In the days when I worked outside of the home, I used to say I had a migraine no matter which of my conditions were having a flare up because that seemed to be the one most people had at least heard of. And even then I struggled to be understood. I have lost friendships and jobs over my health.
I have missed out on so many parts of my life. I have days where I can hear my husband playing with our kids but I am too sick to join in. I have days when a migraines hits, and light, sounds, and smells can set me over the edge and keep me in bed all day. I have been dealing with my chronic health issues for almost 20 years. Sometimes it doesn’t seem possible, sometimes it send me into an anxiety spiral, and sometimes I am just ok with it all.
I have learned to take life a moment at a time.
That my house will be messy more than it is clean.
That some days my kids get more screen time than I would like.
That some weeks we eat out more than I cook.
My family and I are constantly learning new ways to manage life with chronic pain.
There are times I have so much anger with my body and the limits I have when I am in pain, I have found ways to make up for the bad moments. Holding on to the good moments when they come and finding peace with the life I was given.