Why Having Lupus Sucks In The Summer

This will be the first week that I’ve put up a big fat ZERO for running mileage because it’s been WAY too hot to run. (Or even move for that matter!) It’s not for lack of intention. I’ve tried getting up really early to beat the sun before it had time to completely set the atmosphere on fire. However as soon as I stepped out of the RV and got smacked in the face with the sweltering heat and suffocating humidity, the reality sunk in that it wouldn’t be a wise decision since the sun and heat are notorious triggers for lupus.

We are currently on a leg of our summer tour that has taken us into the south. We spent a few days in Florida, then Louisiana, and now we are bouncing around Texas. (Yes, we’re gluttons for punishment) Each of these states has been experiencing temperatures well over 100° and I’m learning that it really does affect me negatively if I am not careful.

Our first morning in Panama City I attempted an early morning run when the temperatures were hovering around 85°. I felt decent on the run and was happy to be out exploring. Later that night though, I had a slight headache and all of my joints and muscles hurt for no reason. My insides felt like they were on fire and inflamed. My brain felt like it had been boiled and then drained of its capacity to think straight. Just sitting still in the shade was draining. It was like the humidity was attempting to choke the life out of me. Or like being swaddled in a hot, wet blanket that you can never take off.

All of us are uncomfortable due to the excessive heat that none of us are used to and I’ve always had a difficult time being active in high temperatures. But it’s definitely more than just the typical heat discomfort I’ve always experienced. I can actually FEEL the sun and heat infiltrating my body as they attempt to shut it down.  At least now I know that it’s more than just a comfort thing, it’s definitely a lupus thing. I’m not gonna lie — it really sucks! 

After that first run in Florida, it hit me that I might have to take a week or two off from running – especially after seeing the forecast of record high temperatures that my body is nowhere near used to. (UGHHH!) It sunk in that I could possibly cause myself to have a flareup which of course is the last thing I want. A friend who also has lupus told me her rheumatologist said that the sun and heat are the enemy as too much exposure can cause organ damage. Obviously that’s the last thing in the world I want to happen. So I guess I’m coming to terms with having to be more strategic with what I do and how I do it. I need to convince myself it’s OK to take days off if it’s too hot, too sunny, or if my body is more tired, or sore than usual.

Typically I try to soldier through the discomfort, but then sometimes I end up paying for it later on. The reality is I’m a 53-year-old mediocre runner who has nothing to prove, so does it actually matter if I run every day? I can use those days to lift and stretch and build my strength, which is something I want to do anyway, so now I can focus on that a little more.

Here’s the thing though — running is my therapy. It wakes me up, sets my thoughts on a positive trajectory, and keeps depression and negativity away. It makes me feel alive, healthy and accomplished, and it motivates me to be productive. So I guess if I want to keep at it for the long-haul, I’m going to have to be smart in my day-to-day decisions. Better a week or two off than a forced month off because of a pericarditis flare or who knows what else.  

Isn’t it ironic though, that the antidote for depression is now the trigger for feeling terrible physically? (I’m sure I’ll discover a life lesson there eventually!) The frustrated voice inside me just wants to whine: 

Why does it have to screw up my favorite season and sideline me NOW?

For someone who lives for the outdoors and sunshine it’s been a hard pill to swallow. I’ll eventually find my new normal. It’s funny though, because I hate air-conditioning, try to be outside as often as possible, and immediately jump for joy when I see the sun in my front yard as it hits 50° in the springtime and I immediately go soak it up. I grew up on a lake, laying in the sun for hours reading, lounging, and swimming all day. So, of course it doesn’t sit well with me that in the summer I’m going to have to avoid the sun and limit my activity when it’s hot out. It’s a twisted turn of events.

Summer has always been the time for all day hikes, mountain bike rides, and long runs. I look forward to boardwalk runs and beach vacations. There’s no way I’m giving up though. Does it mean that I’m going to have to rise at the crack of dawn to get a run in? Maybe. (Is it possible for someone who is not at all a morning person to ever become one? It would be a miracle!) Or perhaps I’ll have to embrace running right before dark. Either way there are options. I’m just going to have to figure out what suits me best. All I know is that this week of sweltering heat has definitely proved to me that heat and Lupus are no joke and that I need to be careful.

I’ve been cautious by staying in the shade and even declining walks around the campground when the sun is blazing. We have an awning and air conditioning so I am making the best of it by reading and relaxing when I can. I can certainly deal with it but that doesn’t mean that I have to like it. All that being said, I suppose it will just make me appreciate the cooler weather when I get home and all those long runs in the snow.

I still have a lot to learn about lupus and how it affects me. It frustrates me to see everyone else go out for their runs in the morning while I stay in the shade working out with resistance bands. I’m grateful I can at least do that, but I miss my morning campground exploration! (Whine) But when the boys return drenched in sweat describing how hot their run was, I know I’ve made the right decision to take the day off. Maybe I’ll have a renewed appreciation for where I live and running in general when I get home. Either way I’m going to listen to my body and try to make the best of it knowing that God’s got my back and will show me how to use this hurdle for good one day! 

Romans 8:28 — And we know that in all things God works for the good of those who love him, who have been called according to his purpose.