Lupus fucks with me on a daily basis. Today I am thrilled to be going out with friends I have not seen in years, childhood friends that have been with me through so much. Even as I am so excited to go out with them in the same moment I wonder how I will manage to get through the evening. Having a chronic illness is humiliating. I wonder what my friends will think of my weight gain, how I will fake it through the pain and most of all why can't today be one of the good days? I get so sick of the focus being on Lupus and so tired of everything that goes with it. The endless tests, drugs and then more drugs and the surprising lack of answers. There is this misconception that modern medicine can solve everything and it is such bull shit. There might be a test to tell you what is wrong and why you might have that particular symptom but often there is no solution. My doctors treat my symtptoms to the best of their ability but there is no cure. The root of the problem is there, always mocking me and any plans I have. I feel like I have to have a fuck you attitude when it comes to Lupus. Without that bravado I am left with feelings I find unacceptable: anger, loneliness, alienation and hopelelessness. I can't accept that.
I cannot get below 15 mg. of prednisone without my whole life falling apart. I try to taper and end up with excruciating joint pain, crazy ass CNS symptoms and complete inertia. Tweaking my pain medication dosage messes with my head. Yet another irony of this illness is that the narcotics are less benign than the steroids and the chemo drugs yet, for me as an addict, I prefer more steroids to pain meds. This is a constant struggle. It is a cruel joke to be a recovering addict who requires pain medication to maintain some quality of life. I can never forget how it was and why I have to keep up this vigilance but I am not going to say it is easy.
My floor is covered in dog hair, garden needs weeded and I have about 14 loads of laundry to do. If I do any of these activities I run the risk of ruining my evening. So I am sitting here sulking about my inabilities. I could just as easily choose to rest languidly without guilt. I don't know why I do this. Martyrdom is so unattractive.
Ths is when having an imagination and some creativity come in handy. I am going to pretend to be someone else. This other person does not fret over uncompleted chores or weight gain. My imaginary persona does not let pain get her down or worry over the things she can't control. No, my pretend me is going to read a new novel and take some extra time picking out the best outfit. Pretend me has the "fuck Lupus" attitude down and is able to stop thinking when thoughts turn negative.
