Pain is a disability too. #lupus

I have a guitar sitting in the corner of my room. It has a pretty thick layer of dust on it. I’ve left it sitting there as a reminder that I’ll be able to get back to it when my lupus is in remission. But lately it’s been more of a reminder of what lupus has taken away from me. To call myself a musician at this point feels like a lie.

I can barely get through a song. I can barely play long enough to learn a song. The muscles in my hands cramp and cause my joints to lock up and I lose control of my fingers. It’s quite painful. I’ve had problems with my hands since I first got a guitar in 2002, but the past few years have been especially bad. I’ve had a lot of testing done, from MRIs to blood tests and nerve biopsies. I just had a spinal tap done to make sure I don’t have multiple sclerosis. All inconclusive in relation to my hands.

I’ve managed to acquire a drafting table, which I thought to be more ergonomic when it comes to drawing and my posture. I haven’t really been able to sit and work on anything yet because I’m still recovering from the spinal tap. My lower back is pretty weak. I went to the movie theater on Saturday and sitting in the theater seats made my back sore for 2 days. My back muscles have had this ‘domino effect’ where I started off sore in the lumbar area, but the muscles surrounding those muscles are now starting to become sore. That’s pretty typical of any back pain, most likely because those muscles are compensating for the sore/injured muscles.

As far as art goes, colored pencils used to be my main medium. But using them requires so much ‘elbow grease’ that I’ve had to move on because they are too painful to use. I bought Copic markers in hopes of being able to put down some color without having to set my elbows on fire. It’s been a good transition, I just haven’t been able to use them as often as I’d like. I also paint, usually acrylics on canvas. When I paint I tend to do an entire piece in one sitting, which is a bad habit of mine.

I have a stack of Japanese textbooks, ranging from conversational to slang and verb conjugations. I love reading them, but I can’t seem to retain any of it. One theory my rheumatologist has is that my blood vessels have a habit of being in a spasm and then “un-spasming”, causing my brain to flux between being over- and under-oxygenated. The periods of over-oxygenation are what cause some of my headaches, and being under-oxygenated would cause the problematic ‘brain fog’ and contribute to my seeming inability to retain new information. He called it “Raynaud’s of the brain” and “Vasculopathy”.

Not to mention the fact that I have headaches every day and am in no shape to be remembering what day it is, let alone Japanese. Pain in any part of the body can make it hard to concentrate. It’s like when you’re taking a test at school and you have to pee really bad. You probably won’t be able to concentrate, right? Pain does the same thing.

The concentration and memory impairment also has made it difficult to do art. There is always a bit of planning involved before I start a piece, and I often feel so overwhelmed by the whole process that I don’t know where to begin. The ‘overwhelmed’ feeling I think comes from knowing that to do art I also have to feel pain in the process. I’ve been trying really hard not to allow myself to associate art and music with pain, but it is becoming more difficult as time goes. It’s hard when something that can bring so much happiness can also cause so much pain.

If the oxygen issue is true of my brain, it makes me wonder about my hands. It could also be possible that my hands are under-oxygenated which is why they would cramp up and tire so easily. I don’t know if I have vasculitis in other parts of my body, but I don’t see how it could be present in my brain and nowhere else. I do have Raynaud’s Phenomenon, which must account for at least some of the difficulties I have.

Then there is always the typical joint pain that goes with Lupus. I’m in a flare right now so it’s especially terrible. I’ve barely been able to type this past week. I haven’t really even been sleeping because of pain, which has been proven to lower a person’s pain tolerance. It’s a vicious cycle.

You can’t tell by looking at my hands that they are a mess. You can’t tell by looking at me that my immune system has gone rogue and decided to attack random things. There is no “wheel chair” or “cane” or other visible entity that makes my disability obvious. If I happen to have makeup on or my hair done, it doesn’t mean I feel well.

As a side note: Let’s be honest. It takes like ten minutes to put on makeup. I’m not going to walk around feeling like a slob to fulfill whatever your requirement is for what a sick person looks like. It’s bad for my morale. I deserve to feel like a normal woman too. There’s always the other side of that coin too. If I walked around like a slob people would say “Well if you only took better care of yourself, you’d feel better”. Either way I can’t win so I might as well do as I please.

I have tickets to a concert at the end of this week. I have had the tickets for months, but I have no idea if I will be able to go. My pain is day-by-day. Actually, a lot of the time it’s hour-by-hour. I could wake up feeling not too bad and get hit with a wave of pain sometime during that day that could keep me at home. I’m constantly having to “play everything by ear” because of pain. It’s really hard for me to make plans, but spontaneity doesn’t seem to work well, either. Sometimes I can feel fine when I go out, but while I’m out I can start to feel like crap and either have to go home early or endure feeling like crap while I’m out. It takes the fun out of a lot of things. It makes it difficult to be social because people just don’t get it.

Welp, until I Andy Dufresne my ass out of the jailhouse sewer of lupus, I’m going to continue the fight to keep the line between pain and the things I enjoy a bold one.

Yeah, that was a Shawshank reference.

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4 Comments

  1. My 12 string guitar is in it’s case in the closet. Another one is in the case under the bed. I have one sitting in my bedroom on a stand so I can at least look at it. Sad. My hands hurt terribly too, bu tmy doctor says it;s old age, Now, they can’t say that to you can they? I’m 61…..I don’t think that is TOO old. Feel better JIll.

    • I don’t think 61 is old, I don’t think it is appropriate that they just write it off as old age. I’m 24, I feel like sometimes I get reverse age discrimination, like “you’re too young to be dealing with that so you must be exaggerating” kinda attitude. When I talk about my hands it never seems to be important to anyone. But it’s holding me back from so many things. There’s a lot of instruments I want to try but it seems silly to buy something I can’t use right now. It’s cool that you have a 12-string. I’d really love to have one, I’ve had it in mind for a while. I have a mandolin and I really like the sound of the doubled strings. Hopefully we can both get back to playing at some point šŸ™‚

  2. I, too have a guitar sitting in the corner. Plus my electric bass guitar. Since Lupus SLE came along they sit lonely. When I feel a bit of energy I’ll think, “I really like that song’s baseline! I think I’ll learn it.” But immediately my energy fades as does the [enter -forgot the word to use here-] the initiative, or excitement.
    I used to post my bass videos on YouTube but had so many people telling me I play it incorrectly I got sick of explaining that my hands and fingers don’t work very well so I adapt. Besides who cares if my technique sucks, I’m playing the song fine and my bandmates are happy with it! I’ve since had to quit altogether due to the Lupus arthritis. I understand the frustration. I feel useless but I hang onto my tenacity of don’t tell me what I can’t do. I might look “just fine” but I’m not.
    I enjoy your blog, sometimes I feel like I’m the only person experiencing this complicated maze of pain, sadness, confusion. I hope good days are ahead for you and thank you for sharing this. I needed to read it. Susie

    • I often feel like people step over the boundaries of “constructive criticism” when it comes to playing instruments. Just because someone’s methods are a little different doesn’t mean that they are wrong. You are the expert when it comes to knowing your own hands. There’s a bassist named Scott that gives lessons on his website, he wears a glove while he plays because of Dystonia. Kaki King has a pretty unorthodox way of playing as well. They are investigating inflammatory arthritis in my case. I know I hold a pick “wrong” and don’t always finger chords and scales the way the book says, but we have to work around pain whereas other people might not. We continue to try to play to the best of our abilities when other people might just give up, so hang onto that and be proud of it. As long as it feels good and sounds right to you, doesn’t matter how you play! I’m glad you like my blog, thanks for reading it šŸ™‚

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