What Chronic pain does to people #lupus

Sometimes when my brain fog is bad I find myself staring into the internet.

One of the websites I visit regularly is pinterest. My feed happens to be full of hairstyles, makeup, and clothes most of the time.

I think the average person doesn’t realize all the things that pain can take away from you, I think they take for granted all the little things they do every day that they don’t even think about that can make a person’s pain worse.

I’d like to get a hair cut. Right now I have long straight fine hair, and I think about cutting it shorter and styling it differently because I’m bored with my hair. I’m bored with wearing it in a bun. I’m bored with it hanging in my face when I try to wear it down. But I can’t cut it. I can’t take the chance that the new style routine will be too painful for me to do, because it will be years before it’s grown out again. I can’t take the chance that a new hairstyle will be annoying, because believe it or not, having hair actually causes me pain. I can’t wear it down because I can’t shake my head to flick it out of my face. My neck hurts so bad most of the time it hurts to wear my hair down. I get stuck wearing it in a bun because sometimes I just can’t take the sensation of hair. I just want it off me.

As I scroll down through pinterest I see cute clothes I could never wear just because I know my skin couldn’t handle the material, or there would be no comfortable way to sit in that skirt, or something is too fitted. Fabric that isn’t stretchy enough can change your posture. It can change your range of motion and the way you move. A person that’s not in pain probably doesn’t realize it, but on days when my pain is bad I can’t wear a plaid shirt because they have no spandex at all. And shoes are a whole problem on their own. I miss dressing up in something cute and feeling cute but most of the time it makes my pain worse to do so. Most of the time I can’t even wear a bra. I’ve gotten to a point where I can’t even wear sports bras. Everything feels so confining, like my movement is being restricted.

I miss wearing makeup. I genuinely enjoy the art of it. But my eyes hurt all the time. I feel like I’ve become allergic to everything. If I can wear my contact lenses at all, it’s only for a short time.

While complaining about these things sounds vain, it’s all a form of expression that I feel is now entirely controlled by my pain. It’s one less part of my life where I’m in charge. I don’t get to put forth my personality through my appearance the way I would like to sometimes. There are some days when I don’t really care, and other days where I get tired of looking how I feel. It doesn’t bother me as much as it used to. But I still have days where I miss being ‘girly’.

More on self expression, I am an artist and a musician, and pain has complete control over those things too. And I’m sure healthy people don’t understand why I “let it take control” but that’s because they’ve never dealt with it before. There are some kinds of pain you can’t just power through. My pain in my hands has robbed me of my dexterity and completely effects my ability to play the guitar. When I draw, things aren’t loose and clean. While I know the skill level exists in my brain, it doesn’t always reflect in my work the way I would like it to. To add to it, the postures you must be in to do this things add to the pain which robs my concentration, and eventually my desire to continue, and sadly sometimes my desire to even begin. These things that bring me happiness and a sense of accomplishment also bring me anger, frustration, and disappointment because of the pain. I try to look at the bigger picture when I work on something, the end result is always being proud that I completed something despite the pain, but I am often not allowed to enjoy the journey.

Living in a world where we are inundated by advertising, it’s easy to come across a show, or a concert or an event you wish you could attend. But my first reaction to those things isn’t excitement anymore. It’s anxiety. It’s “will I be able to get to a bathroom easily”. It’s “will I be able to sit down”,”how loud is it going to be”, “how long is it going to be, “how many flashing lights will there be”, “will they sell something I can eat”, “how far away will we have to park”, “am I even going to feel good enough to go that day”, “is it going to be in the sun”. It ends up being a lot of pressure and disappointment. The same can be said for holidays, classes, and social gatherings (the rare occasion that I get invited to something).

Pain feels like a punishment when you are not allowed to do and be the things you want to be.

Pain has broken my brain. It impairs my ability to concentrate, because it steals away my focus. I can never focus on anything 100%, because a percentage of that always goes to pain, and I can’t shut it off. Not to mention the fact that pain also costs energy, which is also required to focus. To put it in words the average sheep can understand, pain is an app that is always running in the background, taking up memory and battery life, and so you can’t perform tasks the same way or at the same efficiency that a person with no pain can.

As far as sucking it up goes, I do. I do things that cause me pain every day, normal everyday things, and I pay for it. I must allow myself a recovery period if I don’t want to put myself in the hospital. The stress tends to make my immune system attack more things, which leads to more pain, and possibly permanent damage to whatever organ it favors that time. I have permanent damage to my blood vessels, joints, GI tract, and adrenal glands and they are each a disease by themselves that I  have to deal with now. Each causes their own pain and problems, and sometimes treating one makes another worse. I am very overwhelmed by all of it.

Sleep. It’s hard when you can’t sleep because of pain, because you are too tired and in pain to occupy yourself. It becomes a staring contest with the clock and fighting the worrying that one tends to do when they are awake at 3am. The next day you are in more pain because when you haven’t slept, your brain perceives pain more intensely. Now you’re pushing yourself to get through the day since you’re tired and haven’t slept, and you’ll be lucky if this isn’t the start of a new pain-sleepless-pain cycle. Then you wander around the grocery store feeling like a bucket o’fuck, not remembering why you’re there in the first place, and you panic because the lines are too long and the packaging is too bright and you can’t remember where anything is or even string two complete thoughts together.

Pain causes anxiety for a few reasons. When you’ve been in a lot of pain for a long time, you just want it to stop, and it can make you panic. It happened to me a lot when I had active vasculitis in my brain. The pain would get bad for long periods and I just wanted out of my body. The doctors weren’t giving me any decent pain relief because of the crackdowns on pain killers that actually work. Sometimes I couldn’t sit still when I felt like that. Going through that was probably one of the hardest things I’ve dealt with because of the lupus. I don’t know how I dealt with that kind of pain every day when I look back on it. Another reason pain causes anxiety is because it makes you lose faith in your ability to accomplish things. I get anxiety when I start working on a project, because I tend to look at things as a whole instead of taking them step by step. I think about all the pain I will have to be in to complete something and I get completely overwhelmed. It’s not that I’m not motivated to work really hard, because I enjoy a sense of accomplishment, it gives me self esteem. But it gets harder have drive when you know pain is involved, knowing it will be robbing you of focus, energy, and enjoyment.