Lady Gaga said it beautifully in this meme from Mighty Well’s Instagram
I saw and shared this meme on my Facebook page yesterday and I thought it would be appropriate for our next “New Normal” post. Before we get into that, I want to note that in researching them in order to give proper credit, I found their site (which is primarily a site for PICC line wear and accessories) which has a terrific blog that’s appropriate for any of us who live with Chronic Illness. You can check their blog out here and they also have Facebook, Insta and Twitter presences which you can find on the blog.
Additionally, I wanted to note, and publicly thank Lady Gaga (link to her twitter) for being so open about her battle with Fibromyalgia and both the physical and mental repercussions of living with chronic pain. One of the many articles about her battle was a well done piece in Forbes Magazine.
Now- on to Unpredictability. One of the first things that we learn, and one of the last things that people outside our community see is the unpredictability of living with chronic pain. Some days we feel like a rock star, some days we feel like we are in the 9th circle of Hell. The thing that outsiders, from people who rarely see us, to our bosses and colleagues, to those who are learning to live with this right along with us don’t really get is that we can be in bed unable to move on Monday and on Tuesday able to function like most others. Sadly, that’s why they doubt us when we have an invisible illness.
Another common example is as simple a task as grocery shopping. We park in our handicapped space, grab our cart and head in just like the Normals. The difference is that we are leaning on that cart for balance and that as quickly as by the time we finish we are in such pain that after we load the car we have to stop and take a few minutes to let the pain ease or settle into it before we can even start the car. Are there days that we can go in and do a “big shop” and be at the same level of pain as when we walked in? Yup. Can we predict that when we step a foot out of car? Absolutely not. “Joe Parking Nazi” can see us park in the handicapped spot (because we have hang tags or license plates that allow us this privilege) when we get there and go inside. They see us walking like a normal or with a slight adjustment to our gait but don’t see a wheel chair, walker, cane, or other assistive device and assume we are doing something wrong. They see this and then they rant on social media about people “abusing” the plates/tag, try to call us out in local groups, say nasty things to us as we try to go inside, attempt a confrontation or call the police to have us addressed- whatever.
Another example of unpredictability is in what body part hurts the most. My current flare is in my hands, wrists and feet. To function with it I am taking those parts easy. My last flare was in my neck, back and hips. To rest those is an entirely different method of self care. We never know where the pain will make itself known.
The same goes for the fatigue that goes hand in hand with chronic pain. I have explained to my family members that it’s a vicious cycle. Pain is exhausting. Chronic fatigue exacerbates the pain. Once you get on that ride, you just can’t get off of it and you never know when it will hit. I don’t know about you but I can be having a GREAT day and all of the sudden- BAM- exhaustion hits me like a ton of bricks and if I don’t address it immediately I can plan on being down for the count within a few days.
The only thing I can say is- with chronic illness- you have to get used to life being very unpredictable because you can just never know what’s coming next.