By: Erin Adair
In honor of Pain Awareness Month, I want to tell you a little bit about what it is like to be me. I’ll try to be unvarnished, yet not too harsh in the truth of it. In my daily life, I try to be upbeat and as positive a person as I can be but at times life can be overwhelming and it can show through. If some of this seems uncharacteristic of me to those of you who know me well… that may be why and now you can know me a bit better and get, as they say, a peek behind the curtain.
I know that many people wake up tired. Can you remember that feeling you used to get when you were young as you woke up, your eyes were still closed, and you couldn’t wait to start the day? That’s how I remember it felt to wake up with energy. The last time I remember feeling that way was when I was about 19 or so, more than 13 years ago. That was when my life with fibromyalgia and chronic fatigue syndrome (or myalgic encephalomyelitis) began. Ever since then I wake up in the morning feeling about as tired as I used to feel at 2 or 3:00 after my afternoon class on a sunny day, ready for a nap. Do you know that feeling? Okay. So, we’re ready to start!
Let’s get up. My faithful therapy dog, Violet, dances around the bed, excited that someone is awake and jumps across me and my husband (let’s make sure her “Daddy” notices) and often comes around to monitor me getting up. This isn’t by chance anymore- she’s very good at noticing when I have a migraine (I have chronic migraine disease, 15 or more headache days per month) or when I’m about to and she always knows when I’m unsteady. It’s pretty awesome. Sometimes I have what’s called Alice in Wonderland syndrome, which is extremely disorienting, and I sometimes stagger or run into things. Vi is fantastic at noticing when I’m about to, and she’ll poke my calf with her cold little nose when I’m getting close to the wall, so I notice and correct myself (my husband and my mom think it’s hilarious). Now I’m up and it’s time to take my medicine.
I have a plethora of meds, to be honest. I’d say 15 pills plus per day, plus gummies. Without these medications I wouldn’t be able to function; at any level. I’ve tried tapering off of them one at a time at different times. It’s ugly and awful and I just. Can’t. So as much as I hate depending on medication, but they’re necessary and I’m completely and utterly grateful for the relief that they give me. There’s one that gives me 25% relief from my everyday muscle and joint pain some days. It’s incredible, I am so grateful for it and can’t live without it. It’s made it so that I can go places, and actually participate in family events. I can’t drive very far at all, because I’m completely overstimulated by too much pain (and there’s the whole Alice in Wonderland syndrome thing) but it’s very helpful. Then there’s migraine medicines which somewhat manage the migraines, I also take several vitamins and some supplements.
If I’m having a “good day,” I then put on compression socks that help with my joint pain and circulation, some comfy soft pants, and a soft tee or nightgown and get going. If it’s a bad day I put on the socks, a pair of soft pants, and a shirt or nightgown and well, I get going (notice a theme?). But it’s just a “bad day.” That means that I put everything on inside out because all of the seams feel like sandpaper everywhere they touch my skin. My skin feels too tight like I’m starting the day with a sunburn. My hair is pulling on my scalp even though I don’t have it pulled up- my hair just feels heavy. The sun peeking past the curtains is stabbing me in the face, and the sound of the ceiling fan is magnified by ten so that the sound is slapping me in the ears with a whomwhOOmwhOOmwhOOm constantly in the background. My glasses weigh twenty pounds, but I can’t take them off or everything is so much worse. Behind my eyes…a maelstrom of fiery hell, but loud, sharp, and draining and I want to curl up and…the migraine won’t be going away for two more weeks, but I don’t know that yet. “It’s just a headache,” right? That’s a bad day.
Now, after managing down the hall with Violet’s help, I get to the kitchen for breakfast. Sometimes I’m even hungry, which is a really good day! That means a quick small meal to tide me over until lunch. Often migraines cause enough nausea that I just have to concentrate on managing that and sitting still quietly. I’ll make sure that my husband eats, but sip water or milk (shudder, nope, I have a migraine right now, no milk) until I’m hungry again. At this point, I will usually put my noise-canceling Bose headphones on because my upstairs neighbors are awake and running around and if I don’t have them on, I’ll start to get irrational. I know I get irrational about it. I do. This is my deal with myself (and my husband, who is tired of it all): if I have my headphones on and I can still hear it, then I can get mad and complain about it. I probably still can’t do anything about it but complaining might make me feel a tiny bit better.
At this point, I often spend an afternoon with my mom; cooking, painting, reading, or, lately, we’re learning to play the harp. It’s great therapy for my joints. It doesn’t feel very good after a little while, but I know it’s good for me and it’s fun. Cooking is hard, but I love it. Pots are heavy, bending for things in the freezer is agonizing. Opening jars is awful and makes me really angry sometimes. I’m learning that anger is a new issue for me. But after so many years of just sucking it up and dealing this is just something that I don’t think about anymore. That was something my mom taught me a long time ago- if it’s something hard and nobody else is going to do it, why not do it with a smile? That was one of the most valuable lessons I’ve ever learned in all of my life.
On my very worst days, it’s true that I don’t manage much at all. That’s why I have a library stocked with thousands of virtual books that I’ve read and re-read, listened to, and shared. It’s my drug of choice and the biggest vice I have. I’ve talked to many doctors about it, and they agree with me that it’s a manageable way to live even if it may not be the best way to live. “It would be better to figure out how to have less pain,” is usually what is said at that point, and I try not to agree too bitterly. My latest primary care doctor is my favorite, not least because he heard me when I told him in all honesty that I was coming to the point that my choices were 1) live in virtual reality (aka book-land) for a portion of my life or to 2) start drinking and smoking pot or 3) become addicted to opioids for pain management that so far I’ve been able to avoid. He agreed vehemently with me that reading an unhealthy number of books was by far the better way to “deal,” and even appreciate my honesty, while still suggesting a slow increase in physical activity to the best of my ability to tolerate the pain. I asked him if I was actually physically damaging as much as I felt like I was when I exercised, and he paused, looked thoughtful, and took me seriously. He researched. I know that many of you won’t understand how very rare a moment this was but trust me that it had never happened before.
When you deal with chronic pain like mine, like ours, doctors stop taking you seriously when you can’t show them what’s going on. They can stop listening when you can still function, and especially when you still smile. When they ask for a number of where the pain is, you answer honestly, and you’re still able to walk in and out of the appointment, they truly think you’re a liar. And I can’t say I blame them, to tell the truth. My day to day “number” from 1-10 used to be a zero. Then when I was 23, it was a four (I thought it was a seven). When I was 28, my pain scale changed. My endometriosis and adenomyosis worsened to the point that for one to two weeks of the month I was non-functional. And I have a truly impressive pain scale (in my humble way).
I used to scream and cry, but then I learned to just work through it and read. Or paint. Or even take a walk. That’s when my pain scale changed; when my knees started slipping. Something called patellar subluxation syndrome, or chronic patellar subluxation. It’s something that’s honestly more common in small dogs (haha I know) so you may have heard of it there. The kneecap slips out of the small space meant for it, to the left or right because of weakness in the tendons. They usually pop back in, rather unpleasantly and painfully, after not too long. But if it takes a while or I sleep with a kneecap “loose,” it can be quite swollen and unpleasant for a day or more. I have gotten more used to this as time has gone on, but it has taken me a while and it caused me quite a bit more pain in the beginning because I didn’t know how to manage it well.
I’m learning how to manage a lot of my collection of issues better and better as time goes on. I’m pretty sure that I have some going undiagnosed that I’m learning more about and when I figure those out life will go that much smoother for me. It’s a matter of balance, as I see things. A friend/doctor once told me to think of pain management as a table- the legs are 1) rest 2) medicine 3) activity and 4) diet. I have a lot of room for improvement!
Lately, I’m learning a lot of new and old lessons from my chronic pain. I try to meditate at least a few times a week, if not more and stretch whenever I remember to. I use infrared light therapy, soak in magnesium infused baths, drink lots of water and tea, and I practice mindfulness and an attitude of gratefulness every day. It makes such a difference for me that I can’t even describe it.
I’ve learned to leave projects partly finished and that’s ok. I’ve learned how to lean on others. I’ve even learned who to lean on. I’ve learned how to “food prep” on my good days, and I’m really proud of my sister-in-law and my mom for being so good at doing that, it’s harder than it looks. I’ve learned how to be gluten-free, and that my body is actually so much happier when I give it what it needs instead of what it wants. Ugh, I miss caffeine SO MUCH. I’m still in the process of learning that one, and it’s been almost seven years.
I’m learning that my husband is an amazing man who is extremely understanding and supportive when I. Just. Can’t. Anymore. He listens. I’ve learned how very valuable that is. I’ve learned that I’m a bit stubborn, and I need him more than I even know.
So, if any of you are still reading, I thank you for sticking with me and listening. I hope that I’ve given you some understanding of someone close to you. I haven’t said or described any of this for pity or sympathy. I honestly don’t want any, and I’m pretty sure no one like me does. We do appreciate understanding friends. I hope that you can reach out to someone who has pain and help them. They may not even know that they’re overdoing it, or that they need someone to lean on. Sometimes…we’re a bit stubborn.
Erin Adair loves to write, drink herbal tea, reads too much, and usually has paint under her fingernails somewhere. She paints custom shoes, bags, and D&D miniatures while listening to ridiculous romance novels on Audible and loves going camping with her family in the canyons; because learning to take things slow is actually more of a fun challenge than she ever thought it would be.