I need to whine for a minute. Can I do that? My interstitial cystitis flare is now going on day three and causing me quite a bit of turmoil this week. Besides the fact that I am in excruciating pain all day, every day, it’s having an emotional effect on me as well. My emotions peaked yesterday when I had a full-blown meltdown – tears and all! If you know me personally, you know that I rarely ever cry… for ANY reason. Yesterday changed that and it changed me. I grew a new fear of the pain. It reached a level I had not recently known existed and I’m terrified that it won’t end quickly. I’ve previously had flares that last for several weeks at a time, but they are usually much less severe than this one.
I’ve been an emotional wreck for a few weeks now, but this flare has certainly amplified that. It’s hard to find a reason to carry on when you are in so much pain that you can barely even stand on your feet. That’s where I was with this flare yesterday. I could not even stand up long enough to straighten my hair or put on my makeup, and that says a lot. My hair and makeup are the first things I do each and every day. Putting on makeup is the only thing that makes me feel like a human being anymore and yesterday that was one Hell of a struggle. If it weren’t for my precious husband, I would not have survived yesterday’s meltdown.
Today, I decided that I was going to try to get outside and get some Sun and fresh air. My pain level was still pretty high, but walking was mildly tolerable. We didn’t go very far or fast, but we did get out and get some exercise. The Sun has always been a source of healing for me, but because I take Plaquenil, I have to be careful about how much time I spend outside.
I spent less than an hour outside, but that was more than enough and the fatigue my body is experiencing tells me that my day is now over. The hard part of being autoimmune or living with chronic illness(es) of any sort makes it a bit difficult to have an active lifestyle. Prior to diagnosis, I was a fitness fanatic. Once I got sick and the fatigue kicked in, even a simple walk became too much to do. I truly struggle to convince myself to get out the door, but always feel much better once I do. This time, it took the help and convincing of my husband to get my butt out the door. What would I do without him and his support? I often say that I would be dead in the water without him and that’s the honest truth. I really am lost without him.
I’m gearing up for a big medical week to come. It all starts with my second dose of the Covid-19 vaccine tomorrow afternoon. I’m excited to get my life back to a semi-normal state again. At the very least, I’m hoping that my doctors will clear me to go back to work… at least part-time. I also have physical therapy for pelvic pain, a cardiology appointment and Botox for my migraines. If you know me, you know that my medical anxiety is also gearing up for this busy week to come. The biggest stress that I have right now is the cardiology appointment. I have completed all of the testing that was requested, but I am nervous for the results. I don’t know what’s going on with my heart and until I find out what it is I will likely remain anxious as Hell.
Stay strong autoimmune warriors and friends and family! Love and light now and always!