I have a few family members with Lupus, so I knew what it was and seen what mild cases to extreme cases looked like. I had never heard of Scleroderma before. I had so many questions. Getting answers to those questions only made it feel worse. Especially the tests following. Scleroderma is hardening of tissues (skin, esophagus, lining of the lungs) and there is no treatment, just treating the symptoms. Figuring out what symptoms I had was brutal. I had to have a scope of my esophagus, stomach, and lungs. And I've had them done every year since. The only symptom I have is the lower esophageal sphincter (the valve at the top of the stomach) is hardened and doesn't close properly. This causes horrible heart burn. Thankfully this is the only thing going on so far and is easily treatable.
Unfortunately, the Lupus is worse. I am tired all the time. The sun and I don't get along, at all. Being in the sun, for even just a few minutes causes a very ugly rash. I also turn bright red, but not a sunburn, although I do sunburn really bad, really fast. Occasionally I get really nasty sores in my mouth and nose, and its affecting my kidneys.
By the time we finally figured out what was wrong with me I was so sick and could barely function. The medicine they had me on had horrible side effects until my body got used them. Even now, 4 years later, I still have days where the meds make me sicker than the actual Lupus.
It wasn't long before I realized one of my biggest fears is suffering before I die. I focused on that fear for a long time. It wasn't until I met a 17 year old girl in renal failure because of her Lupus. She didn't let it control her, didn't let it stop her from doing what all 17 year olds love to do.
That was when I realized how stupid I was being.
I was so focused on what I was scared of that I wasn't focused on what was going on around me.
So I jumped head first back into being a "normal" mom. Did everything I could with the kids. Walks, bike rides, trips to the park or beach. Not to mention everyday mom and wife duties. It wasn't long before that caught up to me and I was back in bed with no energy.
It took me a long time to realize that I have to listen to my body. I have to plan my day based on how I'm feeling. It sucks. I also had to learn to save my energy. Just because I have a ton of energy at 9 AM, doesn't mean it will still be there at 2 PM.
Having Lupus has taught me:
- Listen to my body. Even if it means missing out on something, I have to listen to my body and determine if its worth making myself sick over. If its something I can't miss, like something with the kids, then I have to pick and choose what I can do for the day.
- Save my energy. After living almost 3 years with no energy what so ever, once it started to come back I would jump at the chance to do things, even cleaning house. When I woke up with extra energy, I'd jump at it and try to get as much done as I could before it wore off. It took a little while before I realized the energy stayed longer if I did little by little instead of over working myself.
- Weather sucks. Drastic changes in weather cause lost of pain that last even longer than the screwed up weather. A couple of weeks ago on Saturday it was barely 65 out. Sunday, Monday, Tuesday were in the 100s. Then Wednesday we were back to mid 60s. I was miserable for more than a week after. I always thought my grandma was insane when she used to say that changes in weather caused her lots of pain. Now I know she wasn't that crazy.
- Stress and Lupus don't mix. Stress is like an instant bolt of life for my Lupus. In no time I'm in pain, my energy has been zapped, and all I want to do is crawl in bed and sleep until I feel better. Needless to say the last few years have been beyond stressful. I've had to learn ways to relax and set aside time for myself to relax. A bath, a nap, if I'm up for it, a walk on the beach.
- Lupus and Dieting don't get along. Its hard to lose weight between not having the energy to exercise everyday, being on so many evil medicines. Add grieving to this and I'm pretty much screwed. I'm not throwing in the towel just yet, but its not easy.
I've had many people ask what its like having Lupus. I was never able to come up with an answer that they would really understand. Then I came across The Spoon Theory. This is such a creative way to explain it that I've sent it to many family and friends. I also use it when people ask.
Now if only people would realize that you can't see Lupus. I don't look sick. Just because I look normal doesn't mean I feel normal.
Lupus sucks. Its my life and I'm still learning to not allow it to control me.