87% of Lupus Sufferers Minimize Their Symptoms. Here's why!



So true. Most of the time, I pretend I don't hurt or that I'm having a good day. I hate feeling like I'm not pulling my own weight and I hate even more being made to feel like I'm lazy or making it up. So I lie. Often. I say I'm ok, when really my body is SCREAMING at me in one way or another. My hips hurt so bad sometimes, just walking or sitting down or standing up is excruciating. Sometimes, my head is pounding and I don't want to say anything because just a human's voice can make me want to cry. Other people shouldn't be forced to not listen to music or carry on with their day because I hurt. And sometimes, my vision gets a little funky and my balance is a little off. But I say nothing.
It's funny that I can be such an advocate for speaking up and being open about Lupus so others can gain understanding and raise awareness. But I'm afraid to speak up to my own family or doctors about what I feel. I even understand that I'm not always doing it on purpose. Some of it is just reflex after years and years of not having a diagnosis and feeling like everyone thought I was making it up. Some of it is just not knowing how to explain it. How do I explain what I mean when I say my skin hurts? How do I explain to someone that I dont believe I have any idea what normal skin should feel like on my body. I can't describe how frustrating and humbling it is to take fistfuls of medication every day. To be grateful that I have the medication at all and at the same time flat out fucking angry that I have to take it at all. Angry that my body hates me so much. Angry that it effects my interpersonal relationships (because you know, Borderline Personality Disorder doesn't effect my relationships at all........dammit.)
For example, my head is pounding. Right now. My shoulders hurt so bad, they're stiff and stuck in this position right now. My right hip hurts so bad, I'm not moving from this spot for a while. My eye balls hurt and my hair hurts. My roommate is listening to....something.... that he classifies as music. It's got strange melodic guitar and a driving, staccatto beat that makes my pulse beat in my skull in time to the "music". Will I ask him to turn it down to a level that isn't screaming at us? Nope. Should I? Maybe. I'm not sure. It's his house and his before-work-get-ready-time. The flip-side is that I live here and feel like shit. Argument back? : Well, I have lupus all of the time, so I always feel like shit. Does that mean he should never ever have the stereo up? Well, I refuse to take that away from my roommates and family. I don't really have another room to go into at the moment... So, I'm stuck. With this. And again, will I say anything? NO. So Stop bitching. Lol. I'll just blog about it and somehow make it seem like it's his fault that I feel like shit and I desperately want to rip the speakers out of the stereo just to make it shut up.
Wow, apparently my bpd is going to rear its ugly head and I'm going to get all revved up about nothing. Sigh. That my dears, is borderline. Lol.

So, mindfulness skill: I understand and accept that I am angry that I have Lupus. I accept that my disease is not his fault. I accept that only I can change it because only I can ask him to change it.

There. That's better. Hope you enjoyed your lupus facts and I hope my ramble made ANY sense at all!! lol. Have a GREAT Monday!!

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