It's incredible how much frustration plays into the life of a Lupus patient. I'm sure people may feel sorry for you, or wish that you were there at that party, but what they rarely understand is how much I wish I was at that party. I'm going through a pretty bad flare right now which makes leaving the house hard right now.
Laying around the house watching TV usually sounds great when you're crazy busy at work, but to be honest, it gets old really fast. I'm beginning to wonder if the rest of my life is going to be spent on my living room couch. I have great friends and family that support me and run this incredible foundation with me. I so wish that I could be a better contributor to their work. I would love to be digging in and doing the hard work, but that never really seems to even be an option.
Being extremely frustrated also comes across as snippy or rude to the few people who really are trying to be kind to you. I can hear my voice getting short with people and cringing at my lack of ability to stay calm and cool. I hurt, I'm tired, and I can barely move without pain radiating through my body. All of that makes being a good friend or family member harder than you can ever imagine.
I so wish I could babysit my niece and take her to the zoo and carry her through all the exhibits. I've yet to ever be physically capable of doing this and it makes me both sad and frustrated at the same time. I want to pitch in and take her for the night so her mom can get some sleep, but I can't do that either. I know that I should stop dwelling on the things I can't do and do the things that I can, but when your options are limited like mine are, that gets harder and harder.
I'm going to try and buck up and be a good sport, but I have no doubt that all you lupies out there no exactly what I'm talking about. Hang in there my friends and I will do the same!