As I talk about a lot on this blog as well as my social media, I live with rheumatoid arthritis and fibromyalgia. I’ve been in pain for 15 full years – this fall begins the beginning of the 16th – and I’m only 25. Because of everything that I’ve dealt with and that I continue to deal with, my life is in many ways completely different from the other 25-year-olds that I’ve met. In fact, my life is completely different from every health person’s. If you were wondering what living in chronic pain is like – either because you’re curious or you know someone who lives with it – hopefully this post will help you understand a bit better!
My normal is not the normal of a “regular” twenty-five-year-old young adult. I can’t work full-time or go to school full-time, and I’ve stopped setting most of my career goals after having to quit my job teaching in Nashville. I need to spend a lot of time resting and I tend to spend my day off in the middle of the week at medical appointments. Twice in the last month my chiropractor has had to put ribs back into place because they are determined to be where they aren’t supposed to be. It is unusual for me to do events at night, and I binge watch a lot of shows because I spend a lot of time on the couch. I can’t drink because of the medications I’m on – and I take 35 pills a day, a low-dose of chemo on Sundays, and have chemo infusions once every fourth months. To be fair, I’m an extreme case (diagnosed 9 years after I started having symptoms), but still. This is what it’s like to live with pain for 15 years.
You find out that there a lot of people out there who lose all filter once they’re filled with curiosity and (what they believe is) necessary righteousness and quickly become awful. They think that they know best because someone looks “fine” – even though they’re not – and yell or make snide remarks because you parked in a handicapped spot. Or if I or a friend of mine asks someone to move from the handicapped spot on the subway, they want to know why they should or what’s wrong with me before they do it.
The places I Uber to the most include the hospital where 90% of my doctors are, the location of another doc, and my house. In that order. I spend so much time at medical appointments that it’s not even funny. I see a primary care physician, rheumatologist, occupational therapist, chiropractor, GI, knee doctor, and more. A few weeks ago, I had 3 medical appointments in 1 day. And while that’s a lot, it isn’t the most I’ve had.
I spend a lot of mental energy trying to figure out the balance between doing too much and not doing enough. That’s the hard thing about my particular health issues. For my fibromyalgia, I have to move a certain amount every day or I hurt more. For my arthritis, I need to keep my muscles strong (or at least not weak) so that they can support my joints. Also, as I’m sure you’ve heard, motion is lotion! An object at rest stays at rest. If I want my joints to be as good as they can be, I need to keep them moving. Of course, given pretty much all of my joints are affected by arthritis, this can be difficult. Walking regularly might help my back, but my knees and hips usually aren’t happy with it.
I’ve forgotten what it feels like for my overall pain to be below a 4/10. I’ve been in high pain for so long and, again, so many of my joints are affected that it’s rare for most of my joints to be below a 5/10, let alone a 4. And even though some parts of my body might be a 2 or a 3, they’re usually overshadowed by the other parts that are at a 6 or a 7.
And I hate the “out of 10” pain scale. It’s such an inaccurate measure of how I feel, but I also struggle to put my pain into words in general, and the out of 10 scale is something that other people can understand. A much better scale is from the amazing Hyperbole and a Half, which you can check out here. Seriously – it is a much better scale.
I get really excited when I meet someone who has a chronic illness that is similar to mine. Oh wow! Someone gets what I’m talking about! I can talk about my health without freaking them out! Honestly, this is the best because so many people get freaked out by my stories, even the ones that only kind of talk about my health. I could be like, “So I was having a chemo hangover, and someone was eating fish next to me. That’s bad enough, but then they …[etc. etc.]” and even if the entire point is about the kind of fish they were eating, the person I’m talking to latches on to the chemo hangover part of it. They get really distressed, and I’m like, “I understand that this can freak you out because you’re not familiar with it, but this is a regular part of my life and your concern and fascination is freaking me out. Can we talk about something else now?” But if I tell that same story to someone who has similar health issues to me, they don’t even bat an eye at the chemo hangover side of things. Plus, the online support from people who have similar health issues is wonderful, but it’s nothing compared to meeting someone in person who gets things.