This is when I become a model…
I was sitting in a training session yesterday, listening to the speaker and looking around the room. I noticed that the people were wearing clothing with very intense colors. I mentally scratched my head, and then realized that all of my symptoms for the week began to make sense.
It’s one of those moments when you realize it is really going to suck. There’s no turning back, and it’s probably going to get worse before it gets better. Fortunately, I have been here before and I know what it is like. I know what it meant to see those colors and notice those sensations.
Two weeks prior, I had intense nausea—the kind of nausea where I wasn’t even able to move my head without fear of losing my lunch. I remember one of the days I went from feeling a little off to quickly looking like death. One of my coworkers drove home behind me to make sure I even made it home a mile down the road. I was miserable, and there was something terribly wrong. Even when I started feeling better the next day, I wasn’t completely better. My sleep started getting jumbled and I began having intense pain through my legs as I slept. I was tired and achy in the daytime, but not enough to really think something was wrong.
This week, I hadn’t slept. Ok, that might be exaggerating. Over four days, I had probably nine hours of good sleep. I had become absolutely miserable. I was feeling dizzy and felt a lot of pain during my sleep. I was also hyper-sensitive to sounds, smells and touch. Bumping into things hurt, textures and clothing bothered me, and I noticed there was quite a bit of tension in my jaw.
I looked back over these paragraphs and realize there is quite a bit of whining going on. I need for people to understand I am a person that walked on a broken foot for five days before going to the doctor, and I have dealt with pain often without getting assistance. I have realized now that this is ridiculous. We have a culture where pain is glorified and we are supposed to be miserable. I am not always the best example (mostly because I don’t make time for myself), but I would like to change this. In fact, the rest of this post will be about the brain, how it works, and self-advocacy. I know it’s a break from the project, but it’s part of my life and my hope is that this story will reach people that don’t know about people with different needs.
So, here goes:
Fibrofog: My brain was already a bit jumbled from fibromyalgia before the accident a few years ago. Fibromyalgia/chronic fatigue causes something called fibrofog. For those of you out there with children, think about the first few months with a new baby—massive sleep deprivation, where there is little ability to have a clear thought. This is exactly how it feels to have fibrofog. To people without children, I liken it to what it is like in college when you cram for exams and stay up for days on end. After a few days, you lose the ability to function.
Energy: Loss of energy can be difficult if you have your cognitive wits about you, because your mind still tells you all the things you NEED to be doing. I am a goal-oriented person by nature, so when I am in the midst of a flare, I hate taking it easy and not doing everything I am supposed to. It makes me miserable to have zero energy. I want to be active and participate. I want to work. I want to have a family. I want to get out and have a life. I don’t know of a person that enjoys a life on a couch watching television.
Pain: There is constant pain, and it comes from things that shouldn’t cause pain. An excellent example happened this week. We have had a drought for the past few weeks, as well as intense heat. I went to run errands after training this week, and we happened to have some fairly steady rain. I went without an umbrella, and the raindrops actually caused burning pain on my skin as they hit my arms. Touch that is inconsistent and is not deep pressure is painful. During a flare I do not like to be hugged if it isn’t deep. I am not a fan of someone just patting my arm, and I become edgy if people bump into me. I am not a mean person by any means—my body just interprets these signals as pain. Until they can figure out a solution to these crossed wires, all I can do is apologize.
So, all of these issues (and many more, really) were present before I had the accident that reset my world. The accident caused exponentially more pain and a lot of memory and organizational issues. After I was about to move about from the accident, I created a notebook to organize information. It made sense to get all of my needs in one place.
I realized now what this notebook is: a self-advocacy notebook. And now, I realize that I need one. I teach my students that they will succeed if they identify their needs and tell people what they need to help them succeed. I guess the best model I can be for them is to model how to do such a task. So, I am going to sit down and identify what it takes for me to function best and what I need from the people around me. I am fortunate to have a wonderful support network. I have a great group of people that work best when they are educated on how they can help me.
My irritability stems from me being tired and in pain, and when my family knows that, they will know how to help me. They will also know it is temporary and it is not their fault. Communication is important, and another vital need of this notebook.
This reminds me of the emergency behavior plans we have for students with behavior problems. It is a Plan B of sorts for students that often require de-escalation, isolation or restraint. I remember reading a student that had a “mad and sad plan,” and wishing I had one of those. We all probably really need one of those…
So, the notebook is in its preliminary form, and will develop over the next week. It will grow as I become stronger in what I want. I know there is a lot I can expect from myself, because I carried a lot by myself for so long. I also know that I function best when I don’t carry everything on my back (which keeps me from having flares). So, the more I share the weight, the healthier I will stay!
I am hoping that this intervention came in time. I think I am finally getting smart enough to realize the flares before they get to be too strong. I remember the last one—I was stubborn enough to wait a month to see the doctor. I finally sat in her office in tears. I told her I hadn’t slept in over a month, and I needed my sanity. I was in constant pain, and I was losing my mind. Fibromyalgia and chronic fatigue will make your body feel like it is failing you. In fact, your body is short circuiting, and is in effect failing you… I felt like I had the flu for the past few months, even though I had to continue working full-time to maintain a living.
I will not go there again. I cannot do that again.
A plan is a start.