Today, I sat to chop my vegetables to make dinner. I’m an energetic person, always on the go, always moving, reluctant to sit for any length of time. My kids complain that I move too quickly, but they love it that I’m up and down with them, that I play dramatically with them. My friends are always after me to slow down when we’re walking somewhere. Friends and strangers have remarked on my sprinting when something comes up and I need to chase someone or something (returning dropped items, fetching kids from danger, grabbing paper or plastic floating on the wind…).
But today, I didn’t have the energy to stand and dance and sing while I cooked for an hour and a half.
I’ve been in pain continuously for at least the last 5 years, but much longer than that I know. You learn to ignore pain as much as possible, when it’s a part of your daily life. I learned to ignore it. I’ve had a high pain tolerance for a long time and when something bugs me, it’s always something big. I generally manage to just push aside and push through everything unless it’s sharp, strong, and long.
I didn’t notice it at first, but I know that about 4 or so months ago, my pain started getting worse. It’s migrating, which means that it’s never stays in one spot, the spots that hurt move. Usually it’s only about 2-5 spots that are noticeably sore. Historically, they’ve all been under 5 on the 1-10 pain scale. 5 is my threshold for paying attention. Below 5 and I ignore it, above 5 and I’m attentive. 7 is when I start getting concerned and doing something about it though. Starting in the last 4ish months, the spots of pain are up in the 6, 7, sometimes 8 range.
Paired with this, I have lower energy, I’m not as gung-ho ready to run as I normally am. I tire quicker. I’ve noticed in the last month that I am always on the lookout for something to sit on, and failing that, something to lean on. If I’m not moving, then I need support.
I thought I was fine. Really, I did. It was bad enough that it was raising alarms, but not so bad that I was willing to do something about it. I’m dealing with a lot of things medically already and I didn’t want to add one more to the docket.
Three weeks ago, I went camping with some friends of mine. Just outside of town, middle of a small bit of forest, tent camping. It was nice, fun, enjoyable. The second day we were out, the three of us went for a walk. My knee was hurting so bad at the beginning of the walk, that I was limping. I ignored it, as per normal, and did my best to enjoy the time with my friends. Eventually the pain shifted as it does, and I stopped limping. Then, it was like I’d walked into a wall. I was in physical pain from head to toe. It was like all of my joints and all of my muscles were crying out at once. Still, I kept going. There wasn’t really anything my friends could have done and there was no where to stop and sit until we got back. After a bit longer, 45 minutes into our walk, I hit another wall. I felt like I had no energy left. Nothing, nada, zip, zero. But, we were on our way back and I knew once we got back, I’d be able to stop. I also didn’t want to concern my friends (for fear of them deciding to pack up and head home right then), knowing it would eventually pass. We were on our way back anyway. But each and every step felt like it was taking every drop of my energy to make. We were only walking for an hour, but it took everything out of me. I was right though, eventually the pain did pass. I did a few things that usually work to get my energy back and some of them helped, though it took a few days of recouping at home to fully recover.
Since then, it’s been a fairly quick downhill. I’ve been doing everything I can to ignore the pain, knowing that if I focus on a thing, it always ends up getting worse. I said that I wouldn’t see a doctor until either I had more free time (after my current work contract ends in a year), or until it was impacting my work.
Earlier this week, I ended up calling in and booking with my GP for the end of the month (thankfully a day I already had off).
I’ve gotten to the point where, even if I wanted to, I couldn’t ignore the pain. I’m notorious for avoiding medication until I absolutely need it. (Trained myself out of needing my inhalers for asthma in high school that way. Also took way less pain medication than I should have after my surgery a year ago.) I’m choosing to sit over stand all the time. It often takes me close to a minute to get to standing from sitting on the floor or ground. I’m starting to seriously consider taking the odd dose of ibuprofen.
Yesterday, I went out for a walk with a friend of mine. For the first time in a very, very long time, I asked someone to slow down. She was walking too fast for me! Just a few months ago it was her asking me to slow down. We ended up wandering around town for almost 2 hours before finally stopping somewhere that I could sit. I realized then that it was the longest I’d been vertical continuously in weeks. After we kept going, she lit up a joint (weed, for the uninformed). She’s got a medical exemption for it and has been trying to get me to try it and see if it does anything helpful for me. I have tried weed several times in the past and have had zero effect from it even when everyone I’m with does. She had gotten me to try it once with her before and it didn’t work then. Yesterday, at the end of our walk, she pulled out her joint and asked if I wanted to get high. I laughed and reminded her of the futility, but said I’d try again if she was okay with potentially wasting her weed. We have different ideas of what classifies it as wasting, so we shared the joint. As per my history, I didn’t feel any different afterwards. When we got back to her place, the three of us (me, her, and her boyfriend who’d not gone on the walk) snuggled on the couch together and watched some movies. I left about 2 hours later and on my walk to the bus I realized that I was walking normally for the first time in a long time. My pain was significantly reduced! The effects lasted until after midnight (smoked at about 730) before they started to fade. I still felt less pain and more energy when I woke in the morning (no more sleep than usual). But, by noon, I was almost back to where I’d been before the walk. By evening, I was so done that I couldn’t force myself to stand long enough to chop veggies. Even sitting, I needed breaks.
It’s a sad comedown. It’s not what I want, not what I ever saw of myself. I’m hopeful that the answer will come back from the doc that it’s celiac (there’s a history of it in my family and I was born allergic to wheat, it’s high probability). That’ll be the easiest answer. I’m worried, however, that I’ll be facing another round of test after test to find out sometime down the line that it’s actually something like fibromyalgia or MS, things that will be with me for the rest of my life either staying where they’re at or slowly getting worse.
I’m coping, I’m trying not to focus on it too much. And I’m seeing the doctor soon. It’ll be okay. Right?