I have a very high tolerance for pain, mostly because I am always in pain. I’m generally at a six or seven on the pain scale on any given day. I have seen pain management doctors, chiropractors, physical therapists, and massage therapists. I still hurt. All the time. Not only do I have back issues, I also have severe fibromyalgia that can vary in severity and flares, depending on what’s going on in my body. Since May, it has been almost constantly flaring. I might get a few days’ reprieve but then it’s back.
But now, as we head into fall and winter, I face a new concern: cold. The cold makes everything worse. I will ache from head to toe before even getting out of bed in the morning. That morning stiffness that generally doesn’t come until later in life? Well mine, which normally lasts anywhere between five and 60 minutes, will take longer to subside. It will take a while for the blood to get my feet to warm up so I can walk.
This morning going down the stairs, I was terrified I was going to fall, simply because I couldn’t feel my feet. My knees get worse; my shoulders get worse. All of those joints with arthritis, forget that. They don’t move at all for a few hours.
And on top of that, I’m someone who struggles with temperature regulation. Too hot, too cold, too many blankets, not enough blankets. Take my socks off, wait leave them on. One foot out, OK I’m OK but now my ice packs and heating pad are messed up so I have to settle in again. Damn, I forgot the controller and my water bottle over there, gotta get up and start over again. That is me. All day, every day, when my pain is bad. Finding a way to be in bed, with everything I need close to me, so that movement is minimal. The worst part is when you finally get in that perfect position and the “oh sh*t, I left _____ over there” so you have to move again or give up and get it later.
As much as I want to lie in bed all day and call the day a failure, I know that’s not the answer. I know moving my body is the answer. But again, it’s a fine balance. Too much movement? You are worse. Too little? Doesn’t really have an effect. The chronically ill’s battle is to do enough to keep them from flaring, but not so much it sends them into a flare.
I do a lot of stretches when I am in pain. Physical therapy stretches, regular stretches and spine stretches help me a lot. I live off of the physical therapy style (11-by-14-inch) ice packs and two heating pads. I have a good system of elevating my legs and getting everything in place that it minimally hurts. I try to get up once an hour to stretch, but I give myself leeway according to what my body is telling me.
Fall and winter are my favorite seasons. But with them come dangers. Storms coming in and out which trigger migraines, cold that triggers pain. The colors change on the trees, and the world gets excited for pumpkin spice lattes and peppermint mochas.
But me, I get nervous. I get ready for flares and more illness. I get ready for cold and flu season. I isolate myself from anyone who might possibly be sick. It’s a dangerous world out there in fall and winter. I’ve already gotten my flu and pneumonia vaccines for the year. If I get sick, my immunosuppressed system will not be very good at fighting it. And then sickness will cause everything to flare.
So I ask you, please, keep you and your sickness away from me. Don’t make my already dangerous fall and winter worse. It already hurts, I’m already flaring, and I don’t need your cold. Because for me, it’s not a cold. It’s a significant increase in pain. It’s pain so bad my heart rate skyrockets and my breathing becomes labored. It’s more migraines, more fibro flares. It can lead to the flu and pneumonia or even a life-threatening infection for me.
I want to be out in the world. I want to watch the leaves change and I want those pumpkin spice lattes and peppermint mochas. My body doesn’t seem to care what I want sometimes. It has its own ideas.
That’s what it’s like when you are spoonie. Picking and choosing what you can and can’t do, where to spend your spoons, how you are going to get through the day with five or 10 spoons. Planning ahead, so that while you might want to do something today, you really want to do something in a few days, so you have to pass on today.
It’s a wonderful time of the year. I wish I could enjoy it more, but please, help me enjoy it as much as I can by being empathic that this time of the year is harder for me, so I might be feeling worse. I might cancel plans. I might not get out of bed for a while. Please be understanding. I’m doing what I can, my best, every day. These days, most of the time I feel like I lose every day. Help me enjoy my good days. Come sit with me when I can’t get off the couch. We, the chronically ill, get really lonely when we are alone all the time, and someone coming over and just spending time with us means the world to us. Especially if it’s at our house and we don’t have to spend the spoons to get ready and go out. But we miss social interaction and we are stuck in our houses all day, so a visit would mean the world to us.
Most of all, just love us through it. Text us just to check up. Ask me if we need anything. Don’t bring your sick self around us. And understand, if we could do more, we would. Respect our limits. Please don’t make us feel bad when we feel worse, especially when it’s this time of year. .