💜Adjusting to life with Lupus as a person in general.
No one ever wants to wake up one morning sick, and then find out they’ll never get better.
In the beginning I struggled a lot. And in now sometimes I can’t believe I’m sick. I’ve asked what I did to deserve this repeatedly.
I worried I would always be sick and essentially useless. I went from being an active person to struggling to do the bare minimum. Thanks to expensive ass medicine, I’ve gotten back to about 83% of how I was. Over the last 3 years it’s taken a toll on me in every sense. Mentally, physically and emotionally. No matter how hard I try to believe it — I’m not the same person I was 3 years ago.
“Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” – Glenn Schweitzer
Sure I can still do the same things but with more restrictions or more planning. I can no longer just go out. I have to make sure I am physically able to do whatever it is I’m trying to do. Although nothing is as exhausting as it was in the first few months, my energy levels still drain easy.
I’m overwhelmed easier. And my depression has gotten worse, as to be expected. But much like my symptoms/flares it comes and goes. I often say I’m fine when I’m not because I get tired of explaining why I don’t feel good or why I’m still not better yet. Or pointing out that it doesn’t matter if I’m young I have an incurable chronic illness so I’m allowed to feel exhausted.
Friendships have come and gone. No one likes the friend who frequently bails at the last minute… not by choice mind you. I don’t know anyone in real life my age who has Lupus so often I feel like I’m alone. Talking can only go far with someone who doesn’t understand firsthand. I’ve been fortunate to meet a few women locally who have Lupus, but they’re all 7+ years older than me. It’s nice, but they’re not in the same… part of life I am.
People only really care that you’re sick in the beginning. When it’s apparent you’ll always be sick, the sympathy wears off.
Nap-time is a do or die type of thing. It’s essential if I’m trying to make it past 6pm. I’ve had people laugh when I tell them I had to skip nap-time because we were out to late doing something, and that’s why I either look miserable or sluggish or I’m not my normal bubbly self– because they don’t understand the effect that hour, hour and a half, nap does for me. I’m fortunate Emma still enjoys nap-time, or rather she knows that I need that downtime. Occasionally when she hasn’t wanted to nap we set up camp in the bed, with the iPad and she lets me doze off for a bit. It’s not ideal but it’s helpful.
At the end of the day, your new priority is making sure you don’t end up in a flare. A constant worry game if I’m honest.