The outside world either thinks writing is my job or that I don’t work at all. In truth, I work constantly. When I’m lucky, that work is writing; most of the time, that work is chronic migraine. I never leave work. Never. I never have downtime and I don’t get to leave my work at the office after a long day. My work wakes me up in the night and I check on it first thing in the morning. I imagine it’s not unlike the tireless, thankless work of a stay-at-home mom, without the rewards of giggles and kisses from an adorable little one.
When I was at my sickest, I expended all my physical and mental energy just to keep myself going. It may have looked like I was lying in bed, but I was giving it my all just to ensure I’d wake up the following morning. That may sound melodramatic to some, but any migraineur who can imagine being chronic will understand it’s not.
Now that I’m doing a little better, I work constantly to try to maintain or increase the improvement, monitoring my diet like a hawk, building up my physical strength, avoiding triggers, researching potential comorbidities, considering other treatments, attempting to maintain balance so I don’t push myself into a severe attack, working through the deep well of grief wrought by spending much of my 20s and 30s disabled.
I keep talking about how much better I feel these days. At my current peak, I function at 70% physical or mental capacity (not both) for a couple hours in a day. Most days I’m thrilled with a few hours at 50%. A so-called good day means I don’t have to focus all of my attention on my health and can instead tend to normal things of life, like cooking, doing laundry, paying bills. I’m tremendously grateful to have this much ability, while simultaneously angry that I work so hard for only partial functionality.
I may not have the money, social stature, or outwardly visible accomplishments associated with hard work, but my effort is commensurate with that of a self-made multibillionaire.
Thank you so very much. It helps to know that others feel the same as I do, unfortunately. I am going to share your post with friends and family for education.
It is so true, no one understands how much effort goes into living with migraines.
I totally understand. I’ve been there and now I’m “better” I am still dealing with a brain that lets me down. I spend a lot of time “working” to try to “hide’ how much effort goes into not showing the mental deficiency. I love my paid job (out in the world) – but migraine stole much of the past ten years and ruined my career.
You get it. And we migraineurs can empathize. Thank you!
this is so well said. thank you.
Thanks, Larissa!
Kerrie
Thanks Kerrie. I love this post. I have been trying to figure out a response to the negative thought that I feel like a failure. This is a great response.