I recently returned from an annual Friendcation with two of my oldest and dearest friends. We started gathering each summer after the death of one of their fathers. I relish these retreats and time to connect with these friends that I've known for 30+ years. This year we went to a cabin I found close to the Idaho border. Near the end of our trip, one of them asked me what the circular shape on my nose was. I replied that it was a lesion brought on from a rash thanks to the sun and the lupus. I had put a healing patch over it. She then proceeded to tell me that she has another friend who has lupus and is in the sun all the time and even runs marathons with her. This friend apparently does not display lesions or rashes or indescribable fatigue after too much sun; at least, not that she shows to my friend. My friend didn't say it, but the implication was clear: I was doing lupus wrong.
Yeah, I cast a little side-eye too, Goat.
Despite my annoyance, I calmly said that her friend might have a different form of lupus since there are now more identified beyond SLE (which I have) and discoid. I also mentioned that I didn't used to have rashes and that it had been years since last I had a lesion. I further suggested that her friend may be in remission as I was for years. I don't know if she'll take any of that into consideration and perhaps not compare one person's lupus experience to another's. I hope she does, though. I hope she looks into the disease a bit more to gain some understanding.
I don't think she did either, Castiel. Check out the Lupus Foundation of America
and it might be clearer.
As I drove home with my other friend, she inquired if I was a spoonie. I had no idea what the hell that meant, but I had heard other people I know who have chronic illnesses use the term. She explained it to me, and I looked it up when I got home. Essentially, in order to explain lupus to a friend, the person who coined the term used a handful of spoons and had her friend describe a typical day. With each activity, the person with lupus took another spoon. I find this explanation simplistic. I also think it could be a way to start to put someone in the shoes of someone with chronic illness. However, this explanation seems only to cover fatigue and fatigue is only part of the story.
You might be a wee bit too enthusiastic for the rest of the story, Steve.
I already wrote about the sun stupid incident that happened on my previous trip this summer. Following that excursion, I knew I needed to behave myself in the sun, so when I went camping the following week I made sure to use the sunscreen and hat prevention. It was cloudy and 65-70 degrees and our area had a lot of shade, but I also know that cloudy days can actually have increased levels of UV intensity. Unfortunately, my prevention wasn't enough. I had a small rash across my nose when I came home. From that rash burst forth the lesion. It seriously was a deep crater-like thing that would scar if I didn't do something to protect and heal it. More sun would just make it worse. I packed my zinc sunscreen, my UV blocking shirts, and my big yellow hat for Friendcation 2018. Spoons do not explain this.
Yup. That's a good analogy.
My friends and I went to get huckleberry shakes on our Friendcation. It was hot outside and my friend with the other lupus person in her life really wanted to find someplace to walk in addition to the shake. Since I don't live in the area, I had no idea where to go. We stopped for our shakes and this gal wanted to take our shakes and go walk around...in the sun...and the heat. I hadn't brought my hat since I hadn't anticipated the walking around portion of the day. I know; shoulda brought it anyway. The walking around came up after we had decided to go drive in search of milkshakes. Holding the shake was making my hands ache thanks to the Raynaud's, so I was sitting on them to warm them up. My friend suggested we go walk and enjoy our shakes at the same time. I asked to please stay and finish our shakes first, which we did. One condition at a time, right? I pat myself on the back for speaking up without mentioning the Raynaud's. Didn't want to draw more attention to how sick I am. It's that not wanting to burden or appear to be making a play for pity. Spoons don't account for this.
Just watching you do this makes me hurt all over, Sam.
Also on our trip, we went to a hot springs. We opted for the cooler of the several pools. Thankfully, I didn't have to be the one to speak up about how I melt in the warmer waters. I don't last more than 5 minutes in hot tubs. I'm really heat sensitive anymore. I had wanted my UV long-sleeved swimsuit for this trip, but it hadn't arrived before I left. So, I zinced up and put on that big yellow hat. Yes, I wore it in the pool. At one point, I felt my skin starting to sting, which is a sign that I need to get out of the sun. It feels like a bunch of pins sticking me all over. Spoons don't cover this.
Now that's a Sting I can handle.
After arriving home from the trip, I crashed. My husband kept asking what I wanted to do about dinner. My mind was so fogged I really didn't want to have to make the decision. Having to make that decision was seriously more than my fatigued and pain-ridden brain could process. With my head pounding away a migraine and my body slowly crumpling under its might, I made the call on dinner because it kept getting thrown at me to figure it out. It felt like the most difficult decision of my life right then. Spoons don't describe that.
I don't wanna! Don't make me!
While researching the spoon theory, I read a blog that criticized the woman who came up with the comparison because if things like brushing her teeth or doing dishes makes her lose a spoon, she's not taking good enough care of herself. It's not just those without conditions who judge; we judge each other. I've done it, but I've learned that compassionate understanding is better. I still catch myself in judgment mode, so I have to step back and remember how much the judgy attitude hurts. I take the best care of myself as I can, but still I have flares. Sometimes, it is a struggle to get out of bed and take a shower. When I was in remission, it wasn't hard at all. But things change.
As if I have a choice, right?
The cost of living our lives changes. Sometimes, the cost of living life means increasing prevention methods. Sometimes the cost of living is dealing with the aftermath despite the prevention. Sometimes the cost of living is figuring out how to graciously handle a thoughtless remark. Whatever the case, sometimes even a silver spoon can't cover the cost.
Sure. You're pretty good at fence hurdles, but can you run a marathon, Moose?
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