In Sickness and Health…
When it’s been pretty much all sickness, and how to slog through that.
Sometimes I’m just going to journal here as a way to process what I’m dealing with, and I thought some of you might be going through the same issues or love a person who is. I’ll still write about life, love and loneliness. Finding your happiness, saving money and crazy parenting.
Having been dealing with autoimmune illness since the summer I turned 17, I’ve tried to look forward believing I will get better, I will make it to a better place and no matter what I will stay happy, positive, and encourage others on their life journeys.
I kept things secret in high school and college to a degree, because as much as I love my mom, she isn’t quite the nurturing type. I noticed drinking diet iced tea and diet soda made it feel like my bladder was being pricked by dozens of pins. I stuck to water, and the problem resolved itself. For less than a year.
But lupus? It took me by surprise. I thought the blood tests would come back negative, and the doctor would tell me the usual “avoid stress”, “relax” and “it’s all in your head”. But every lupus test came back positive. That hit me hard.
I lost my aunt to lupus when she was 41. In the end it attacked her brain and she went blind. Her twin has it, but she suffers from a milder form. We take the same treatment, and while she has energy to spare, I don’t. Seeing her a few weeks ago drove home the stark difference between her disease and mine, and it’s hard not to grow upset.
I feel like a failure for the treatment not helping me to get back to who I was before it all happened. I know. In my head, it’s not my fault, but it is so hard not to compare.
I’ve been dragging for the last two days, with the fatigue nipping at my heels. I feel it keenly now, and the rheumatologist anxiously asks how my fatigue is. The treatment is helping, since my joints don’t ache nearly as much, but do I lie and tell her I’m better than I am? Just to make sure she keeps me on the meds?
I push at my limits, and I think a lot of my family doesn’t know I do this. I was so exhausted today that I climbed on top of the bed and fell alseep. I wanted to go shopping with my son, and it was all planned for tonight, but I needed rest. I went. I just made myself go. And now the joint pain is protesting.
Tomorrow I’m supposed to drive an hour away to visit my new daughter-in-law, but I am so tired that I know a day in bed spent reading is what my body is calling for. Do I listen? Do I push, yet again?
I eat sugar on days like this. The pure shot of energy works for a bit, and I almost feel ok for thirty minutes. Except my brain is slower, and I feel bogged down in quicksand. I need more rest days, and I thought this I.V. treatment would wash it away. I thought I’d feel like the old me, before lupus.
I just stumbled into life with issues and had to learn to deal with them on my own.And that’s okay. I shuffle upstairs to be out of sight and out of mind, and I feel sorry my husband has a broken down wife. He is the positive one. He gently pushes me to do more than I would if left to myself. I’m so blessed that he works and makes enough for me to stay home and journal about my strange life.
When I think of all I could have done had a healthy body been handed out to me, it feels as if I’m watching from behind a gauzy curtain. The image isn’t clear. I don’t know the path I would have chosen, but I don’t think I’d have the mercy, meekness (ha! but it’s there), patience and gratefulness I find inside.
Lupus might give me a shorter life. I really don’t know. But I’m going to keep pushing as much as possible. Except for the day in bed. I need one of those badly. It’s a lupus thing. At least I understand when I need one.
I hope you found a thread of sense through this ramble. I hope you have more days of health and vitality than sickness and pain. If not, chin up. We sickos need a keen sense of humor to see us through life.
Start a list of all the amazing things you would have accomplished had you been well. First Lady? Flying to the moon? Solving world hunger? Or just looking fifteen pounds thinner. Have fun with your lists. And don’t forget to be nice. Even on bad days, we have to find kindness and use it.
Good luck out there. Here’s to a beautiful day free of pain and hurt.