This Is Your Fibro Body on Stress: A Fibromyalgia Simulation Suit

There are old age suits. You put it on and you age 40 years. I’m not sure how they simulate the aches and pains that come with old age, but it does give a younger person a good idea about mobility and the difficulties with motor skills associated with age. Cool. I wonder if there is a suit to approximate a fibro body. When I Google it (half-heartedly, I admit), I only come up with wishes for a simulation suit. It would be complex. Not everyone experiences fibromyalgia the same way. Even good days have symptoms; bad days can have a myriad of symptoms. In addition, fibro reacts to outside stimulation that can create a “fibro storm”- a whirlwind of symptoms that can knock you off your feet. Here’s a circumstance and consequences of putting mental stress on the fibro body:

I work as an Education Program Coordinator for a large medical institution. It’s a great career that fits me, allows me to challenge myself but also manage stress for the most part. It doesn’t usually knock me off my feet. My favorite time of the year is interview season and selecting the new batch of residents. It’s my Christmas. This year for the first time (due to COVID, of course) we had virtual interviews. We have worked for months getting ready, deciding how we want the interview days to look, how we can present ourselves the best, give the best experience to both candidates and interviewers. It’s been an arduous task, and once we developed the plan, I’ve been going over and over it in my head for the last several weeks. Last week was the first set of three days of interviews. In addition, we developed a virtual social event for the candidates to meet our current residents so they could socialize and ask questions. Both the interviews and the social event requires me to sit at the computer all day with a timer and move people from “room” to “room” for about 12 hours. We could have hired an IT person to do this for me, but he or she would not have made sure the interview was actually done before moving the candidate. We decided it was better for me to break into the interview, let the candidates and interviewers end and then move the candidate out. So that’s been my day – watching timers, talking to candidates, being on call for technical difficulties. I’m not alone; I have the residents and a partner to back me up. At this point, we’re at three days done and three more to do next week.

Before the end of the first three days, I could see on my computer screen that I had lost color in my face, despite the computer backlight I have, and my double chin was thickening. My eyes started to swell despite getting good sleep. Both the pain scale and the relentlessness scale was ratcheting up. The pain was not the usual joint pain. It was a deep tissue pain that radiated from the inside out. In addition, joint pain was increasing throughout the three days, in particular back pain, probably from sitting at the computer for such extended days. Walking was problematic. Shortness of breath stopped me from walking at a normal speed and at one point I had to stop completely, just for a moment, before I could take another step. If a bench had been right there I would have gladly sat for a few moments and caught my breath. By Friday, I was losing my vocabulary. I couldn’t think of the term “bluegrass” and several other words or phrases that I was searching for. I was fighting against sleep, slurring my words, staggering in the hallway. I know it sounds very dramatic, and it was not terribly noticeable to the people around me, but in my mind, I was at a crisis point. If I had to do one more day of this process, I am sure I would not have managed. I not only love my job, I rely on my job. I would lose everything without it, and if I appear drunk during interviews, I have no doubt my job would be on the line. Friday night, I was asleep before 9PM. Saturday morning I woke up about 8AM. I was asleep again about noon, awake at about 5PM, asleep again about 11PM. Today, Sunday, I’m maintaining consciousness without physical activity.

Here’s my version of the fibromyalgia simulation suit in this circumstance:

  1. Get a bad flu – this will simulate the generalized interior ache and ill-feeling – I often feel like I have a fever
  2. Add weights to the shoulders, elbows, and ankles
  3. Drink several gallons of water – which do not go to the bladder, but are retained in your tissues and joints
  4. Simultaneously, eat a 1/8 teaspoon of cinnamon to simulate dry mouth
  5. Add pressure bandages to your joints and then tweak them so they not only impede mobility but add pain
  6. Wrap an Ace bandage tightly around your chest so you breathe with your shoulders instead of your diaphragm, and you feel a constant struggle to get a deep breath
  7. Stay awake for 12 hours longer than you should – lose one night’s sleep
  8. Put in earbuds with either continuous static or high pitched ringing
  9. Add to the earbuds a talk show with someone talking incessantly (brain chatter)
  10. Take off prescription eye wear or put on glasses if you don’t normally wear them
  11. Remove the rigidity of your walking surface – add soft spots or tilt the floor boards so they aren’t level

A fibro simulation suit may be doable, but I wouldn’t wish it on anyone. Do I regret a week like this? Do I dread the upcoming week? No and no. I accept and choose the consequences for the things I do. The only things I regret are the things I have not done. The only dread I have is losing the choice to do them.

Happy 2021 – Begone 2020

I’m not actually angry with 2020. There are actually a lot of positive things that happened in 2020 on the whole personally, socially, politically, etc etc etc. Hopefully we (society) can take the good things – such as learning about what’s truly important in life and coming up with innovative ways to work and keep in touch with family and friends – and build on them in the coming months while we wait for our vaccines. Personally, I’m going to focus on my own little corner of the world. It’s like I’m living in a messy closet right now. A little organization and cleaning is in order. Until my closet is in order and without a layer of dog hair on the floor, I can’t expend the energy on anyone else’s closet. There’s a Bible verse about removing the mote in your own eye before you try to take out the mote in someone else’s eye – I don’t remember the verse exactly, but only because of the word “mote.” I had to look that one up way back when and it stuck with me. I think that verse should be the anthem for 2021. Essentially stop being judgmental, fix your corner of the world. I’ve always said, if everyone fixed their corner of the world, the world would be beautiful. Instead lately we’ve been gnawing at everyone else’s motes.

So my goal – not to be confused with resolution: Clean up my closet, inside and out, top to bottom, until it shines. Of course when it shines I’ll have to start over because that dog hair gets everywhere, but I’ll be able to expand the scope by bits. That’s all. That’s how I’m going to spend 2021.