The Ups and Downs of Chronic Illness

Judith Rose "Vivir con una Enfermedad y Dolor Crónico"
Judith Rose
“Vivir con una Enfermedad y Dolor Crónico”

I am excited to finally be back on Lyrica – the one medication that truly helps my Fibro pain and makes me functional outside of work. I was without it for over a year due to it being a very expensive drug, being on a state healthcare plan that wouldn’t cover it while I was unemployed, and then struggling to find a primary care doctor that would take me on (because apparently I’m “complex”) and prescribe it after getting insurance again. It’s been a fucking process to get something that significantly improves my quality of life. I am seriously happy to have it back and the potential of less pain.

But after a week I am on the roller coaster of initial side effects – sleepiness, dizziness, spaciness, general brain weirdness, and vision alterations. Side effects are stupid. I get that it’s a drug that works on parts of the brain, so the brain has to get used to it’s presence. That doesn’t make it any easier to deal with a whole new set of symptoms, even for the short term. Work and home still require a fully functioning brain and I feel like I’m falling short, damn it.

One of the hardest aspects of chronic illness is the constant fluctuation. Things change all the time – day to day, month to month – from how much pain I have to how much brain capacity I have to how different substances and medications impact me (like I can no longer drink more than a couple ounces of beer or wine because it prevents sleep). Much of my energy goes to managing symptoms so that I’m functional enough to work full time and help support my family. It’s wild to imagine the life I was living 5 years ago – working full time, raising a teenager, running an all volunteer organization on the side, and dating. Now I’m only succeeding at full-time work and my relationship with my partner. My other relationships and my creativity are suffering. I’m hoping Lyrica will change that.

At least there is a light at the end of the tunnel, as long as it works like it did the first time. I can’t imagine what the pregnancy would have been like without it. Keeping up with a two year old is definitely hard without it. I have hope that this could be a game-changer for me and the people I love.

*Art from “The PAIN Exhibit is an online educational, visual arts exhibit from artists with chronic pain with their art expressing some facet of the pain experience. The mission is to educate healthcare providers and the public about chronic pain through art, and to give voice to the many who suffer in silence.”

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