So on April 26th, I started to feel bad and a serious lupus rash started showing up. This was the morning I noticed a big change and started to think whoa I need to slow things down. By the afternoon I was down for the count. My husband was like I’ve never seen you like this and truth be told it had been a very long time since I’ve had a serious rash like this. My first thought was maybe I overtrained. But looking back on my training log for the week I had worked out but the effort/hours were modest. I didn’t kill it this week. The second thought was the sun. I’m typically careful in the sun but do I put sunscreen on every time I step outside for any period of time – no and I walked the dogs on a sunny day the day before. Could it be a combo of these things? Sure – could it be something completely unrelated – yep. Lupus just sometimes happens.
Typically when I start having a lupus flare rest is the best medicine. If I rest a lot of times – I can slow the flare. I slept pretty much most of the weekend. My very worried husband at one point asked if I wanted to go to the ER. I knew if I could sort it out until Monday and see my rheumatologist I would be way better off than in the ER. I was in pain and fatigue was off the chart but I knew I could hang in there.
Monday morning I made my appointment and went in to see the doc. Everyone was pretty surprised at my rash. It was on my arms chest and face. My pain and fatigue were pretty much the same as it had been all weekend. We upped my normal lupus meds and added some prednisone to try and kick my immune system down a notch. I had my infusion scheduled for another week or so from that date so I would check back in then to see how things went.
So training was definitely not happening. It took all I could do make a meal or work part of the day. I had ordered a book that I had been eyeing as I had all this downtime. If you can’t train then read about training I guess. The book was Triathlon for the Every Woman by Meredith Atwood. Even though my kids are grown and I found triathlon much later in life than Meredith did I found her story to be very heartwarming and inspiring and downright out loud funny at points. I actually conveyed some of these stories to my husband who was probably thinking… she’s talking about triathlon again (queue eye-roll). But still, he listened and humored me. Taking care of me and the house was a bit much for him these last couple of weeks. Dinners were becoming more and more take out and my house was starting to need an overhaul. These are typically my departments and it was starting to show that I wasn’t holding up my end of the work. I was still too tired to do much of anything.
Fast Forward to May 6th – Infusion day. Rash still hanging around but better – fatigue still crazy. I try to do one thing and then I have to go to sleep for hours. Doc not completely happy with my progress and doubles my prednisone for the next 10 days. (did I mention I hate prenisone) I agree because I’m sick of being sick so let’s get this worked out. By midweek all sleep is gone. Prednisone makes me really edgy and wired. My sleep was really affected but day over day things was improving. You’d think I had all this energy as I felt wired and couldn’t sleep but the fatigue was still there and when I did try and do things I’d get dizzy and frustrated.
Finally a walk outside. I can’t tell you how happy I was to be out and about and take this picture. Kam laughed at me when I said stop I’m so happy I want a picture of us walking our dogs. These days have been hard. It was May 7th so by today I’ve been down for the count for 12 days. Needless to say, I didn’t do much else beyond this walk but to be moving around again was just awesome. I’ve been feeling really blue about not having any energy, about feeling bad and about not improving at my usual bounce back rate.
Today is May 17th – Put on Purple Day for Lupus awareness month. 22 days in from the start of my flare and I went swimming today. It wasn’t a particularly long swim or hard training but it was movement, it was everything. Slowly moving back to my goals. I have races coming up and I need to get back to it. Here’s hoping that I can start to work without aggravating my illness. For those of you reading along that are fighting the good fight – keep fighting for those of you blessed with good health – don’t let it go to waste! Be active! Live life.
Here’s to starting again – again.