I’m starting to understand why people say chronic pain is isolating. I see so many people supported by strong communities and families through their hardships, so I figured it was only isolating for people (like me) who don’t have strong support systems in place. But I don’t think that’s really the case now. I think, even those people who are supported by the most loving people possible, ultimately feel completely alone in what they’re going through.
Living with chronic pain sucks. Mine – Rheumatoid Arthritis (RA) – is invisible, for the most part. My rheumatoid symptoms are: depression, getting sick often, hand pain (this was probably the most obvious symptom I ignored the longest – don’t ignore it!!!), leg pain, mid-back pain and neck pain. I started to have a strange pulling and tingling sensation last week in the front of my shin, which was baffling until I remembered my pain will show up in weird ways. Other symptoms include deep fatigue, and when it’s really bad, flu-like symptoms: generalized pain, can’t-get-up fatigue, low-grade fever.
I don’t limp or shuffle (except early in the morning). So this is a good thing and a bad thing: good, because I don’t get a lot of pity and can focus on my work; bad, because no one knows how much I’m hurting and it makes me feel pretty alone sometimes. When I’m feeling completely awful and like I need to go home, I push through, because I get strange looks when I say I’m hurting, or feeling tired.
I work in fitness, so people make assumptions. Or I perceive they do.
Lately, I’ve been feeling like my job hurts me. I can look back and see that it hurt me pretty badly when I was full time, how it conspired with RA to make me feel terrible most of the time. But even part-time, I can tell some aspects of my job hurt me more than others. I really enjoy Spinning, but those are the days I go home from work and feel like I’m coming down with the flu.
But it’s manageable, I guess. I’m not thriving, but I’m doing a lot better than I was six months ago. Everything seemed so hopeless then. Now I have a plan to manage everything, and that includes lots of sleep and rest. And it’s mostly working.
Well-meaning or something like it
I do get seriously annoyed by the things people suggest, sometimes. They tell me, either directly or indirectly, that I should lose weight, cut out sugar, cut out gluten, meditate, do yoga and exercise. I have a hard time not getting defensive about this. Hello, I’m a fitness professional. I’ve been meditating since I was sixteen, have been teaching yoga for years. I may not have mastered Clean Living, but I’m at least well-versed in its benefits and I do the best I can.
I also get really annoyed at all the sites on the Internet that promise an arthritis diet or say there is special arthritis food. There is no such evidence of this, none!
Just don’t give advice to people about a disease you know nothing about, okay? I’m going to follow this advice from now on, too. I think about how many overweight people must deal with this every single day and it makes me feel so sad. Everyone has an opinion, but even professionals have a hard time focusing on the facts sometimes.
Starting every day is a struggle. I am tired and achy and nothing feels like it matters. I remind myself that I can’t be complacent about depression, even though that, too, has been manageable of late. So I buck up and go through my routine: Morning Pages and coffee, exercise, shower, meds.
By then things are beginning to look up.
I know people who have RA who feel bad all day and through the night. I guess that might be me down the line, but I just can’t think about it right now. I am told that starting medications in this early phase can prevent the worst long-term damage, and I hope that’s true.
In some ways, this makes me feel worse. Like I’m stuck in my life and I can’t really plan to do anything because I don’t know what I’ll feel like tomorrow or what my future will be like. I can’t plan to travel, to go backpacking, or to be a foster parent. (I know people do all of these things with RA, so there must be a way, but the unpredictability of being able to function at all leaves me confused. I can’t imagine trying to do these high-level things.)
I feel stuck in my job, because I can’t afford the rheumatologist on my own, not to mention all the lab work and prescriptions. Not that I was planning to quit. I just hate the feeling that I couldn’t if I wanted to.
So I feel pretty alone. I don’t feel like anyone understands what I’m going through. I haven’t been a very good friend because I’ve been so focused on trying to get through each day, and my recent attempts to reach out have largely been ignored. I guess I’m not a lot of fun to be around, though I try not to complain. (Which, yes, makes me feel even more isolated.)
Loneliness and depression are not a great combination.
I’ve been thinking about getting a dog to deal with loneliness. I have to admit that it’s not a great idea, and I can’t really afford it, but it might overcome loneliness more than my cats do.
Or maybe I should just try to appreciate my cats more.