Life is lived outside the doctor’s offices. Life isn’t just about test results, exams, referrals and prescriptions. I do, I live a life outside the appointments. It’s good, full of fun, great people, and normal people activities. It’s also full of thoughts that I wish I didn’t have to think. It’s full of thought processes I wish I could skip over.
There’s a part of my life that I have fought, that I have tried hard to say that I have accepted. I am Chronically Ill, that isn’t going to change. I have to come to terms with this. I have to stop fighting the thought processes that go along with that. I have talked great lengths with my therapist that I’m on the edge of acceptance but I’m not there yet. I still fight it. I still get scared, because what does acceptance of all this even mean? In part, it means letting go. It means letting go of the healthy me that is no longer. It means saying goodbye to what I thought was the future that was ahead of me. It means accepting that I am not completely in control. It means having to learn to be okay with not being in control.
There’s a funny thing about that, I never thought this would be an issue. Yet here are coming up on what I consider the year mark of when I started getting sick and I’m still having momentary freak outs over the loss of control that these two illnesses have brought into my life.
There’s also an interesting thing that happens when you get a chronic illness, you have to learn how to have that condition. It is true there is no set way to have Lupus or APS, but I find myself occasionally thinking, I just simply do not know how to be this sick person they seem to require me to be. It was pure torture to start taking so many medications at first. I went from relying on natural remedies and holistic cures, to having a miniature pharmacy in my bedroom. Yes, I am 30 years old and I have a pill-box, with AM and PM slots, and a key fob that I carry my pills around with me. It wasn’t a gradual occurrence, it was abrupt, like slamming into the side of a wall. It hurt my soul about as much as well. Then over the course of a few months I found myself on an anticoagulant for the rest of my life, and then a few months later I was placed on a high risk immunosuppressant. Both of which require frequent lab work because they are risky medications.
So what does acceptance really mean? It’s learning to love me again. It’s learning to trust my body again. It’s learning to trust these new people in my life, my doctors. There is a whole lot of learning going on. I still feel like I’m navigating a foreign land with a really shitty map that I’m having to write as I go along. I’ve met an awesome tour guide along the way, and slowly we’ve added others that have specialties. Trust is building. My footing is becoming firmer. One day I will be able to say I have fully accepted this part of my life. One day Lupus and APS will just be, parts of me.