I Feel Guilty About Less Lupus Pain Despite New Symptoms

When I was diagnosed with lupus, I put on my battle gear and went to war. I changed the food I ate, how I cared for myself, the country I lived in, my career, and even my attitude. I learned to mind my business. As a former fashion blogger, real estate professional, and fitness competitor, appearances mattered to me and that led to me passing judgments on others. Sometimes I look at my life now and wonder if lupus is serving me up all of my judgy karma.

I remember speaking about skinny women I’d see out in restaurants eating salads. I’d joke and say, “That broad needs a cheeseburger.” Now, I’m the broad who needs a cheeseburger, except they are not good for my body. I made comments that were none of my business. I thought people could exercise their way to health, that everything could be solved with a run, some weight lifting, and some chicken (gotta get that protein). Now I realize that I was telling stories that were not mine to tell.

I’m a solutions-driven person and as I battle with food, finances, career, spirituality, and mental crap, I find myself in a major funk. Lately, I have experienced reductions in pain and brain fog. However, the guilt I have about feeling better has led me to sabotage my dietary plans. I ate foods I knew were potential pain triggers. I asked myself why — days before I’d shared with a friend that I was feeling better and had more clarity, but that I feel guilty for this improvement when I see others in pain. So, I had to “fix” that.

I may have finally found a solution for my brain fog and pain, but I’m struggling with new symptoms such as muscle weakness that sometimes causes me to topple over without warning. I feel like an old woman as I struggle to complete basic tasks: Even opening a bottle of water is a challenge. I would prefer it if I didn’t have to take so many medications, but the pain would be too much. I have done the cold turkey thing before (don’t do this — it’s foolish) and, of course, I suffered before my diagnosis. Lupus pain is not for the faint of heart, that’s for sure.

I leave my home less and less. Some days the sadness is so overwhelming that I don’t want to sleep because when I do, I am jolted awake by anxiety or disturbed by dreams about the issues I’m not ready to face. I am taking on more work and filling my days with a rigorous schedule (may as well take advantage of my increased clarity). I do my best to think happy thoughts, but I have many sad moments.

I socialize less because I’m reluctant to try to explain to strangers what is happening to me should my body decide to rebel while I am away from home. If I stay home at least I am in my comfort zone. I will continue to figure out solutions — but I am tired. Yes, I’m still smiling because I’m a special slice of crazy — lol.

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