As I sit here wired up to a machine and blood slowly, definitely not surely twinkling out my arm, I’ve started to think about the effect lupus has on my life.
One thing is for sure it’s a royal pain in my ass.
It’s not the pain that gets to me the most, not even the exhaustion but the other ways it changes ones life.
The brain fog is a massive problem, the constant medicated state grinds on me probably more than it should. If those few things are not already enough to deal with, add in the hours and hours that I sit in this chair either having venesections, like I’m having today or the 8-10 hours of infusions which are a 5 day course.
They bring their own amount of stress, pain and the most awful headaches I’ve ever encountered.
The hours and hours I’ve lost from actually living isn’t even worth thinking about, I think I would walk out and never return if I let myself count how many days even months I’ve lost due to them.
Then add in the god damn butterfly rash that has haunted me all my life, the bullying I’ve dealt with, the tears I’ve cried and all the makeup I’ve gone through in hopes of covering it up, which then leads to rashes and irritation. I truly dislike having to wear makeup and now I only do, if I really have to, I will wear a little, in hopes of a miracle, that my face won’t glow.
Of late I’ve had to deal with the hair loss, the handfuls that come out in the shower, or I wake and my pillow is looking more like a cat than a white pillow case.
Then comes the weight loss or gain, this drives me mad, it’s not that I’m vain, I’m far from that, take me as I am or not at all. It’s the comments of “You are so thin” or “oh my you’ve put on weight” not that I ever go above a UK size 12 but when I’m sometime a very small 6, that’s a big gain.
There really isn’t much point even making the most of it and shopping until my heart’s content, as my sister in law would do, I’m to exhausted for that and I’ve never been a great lover of shopping.
Clothes also hurt so it’s extremely difficult to find something that doesn’t make me look like I’m from the workhouse, I’m pretty happy in my hippy clothes, I was born to be a hippy. My height really doesn’t help when it comes to clothing, I’m a short ass so clothes are already limited.
My confidence has taken a massive down hill spiral, I get very panicked when I’m not sure where I am or who’s walking too close behind me. Be it the meds or the lupus, I don’t know but it’s a mother of all bit..es. I won’t let it beat me down though, I have to try to do as much as I can because I have one little lady relying on me.
The thing that gets to me the most, is the lack of understanding, the lack of knowledge, hence why I’m trying to explain a little of what it’s like, not to rant or moan but in hopes of educating.
With all the said, I’m happy, I’m breathing and one day hopefully there will be a cure, here’s hoping. 🤞
Anyway my time sat in this chair is almost up so I’ll wish you a good day and hope to see you back here soon.
Have a good one.