What it is Like

Hello, my friends! I hope you are all doing well. I have missed you. We are getting ready to sell our home, so I have been busy weeding through the clutter we have accumulated and packing up the important things. This is going to be a huge change for us as we are moving out of state. So long, Arizona! I will do my best to document the journey along the way.

Today though, I wanted to talk (again) about Fibromyalgia and other chronic “invisible” illnesses. So often, those of us who “don’t look sick” are judged based only on what others see and their lack of knowledge and understanding. I recently had an argument with someone close to me about this matter. Sadly, I know they are not the only one who feels this way. They perceive me as someone who is lazy because I cannot work, but they see that I have done other projects around my home. What they don’t see: medication to get through the pain, tears, restless nights, naps, fatigue, and three days of recovery. Try as I might to not let someone’s opinion of me get under my skin, it does. I try to keep in mind, that it is hard to comprehend what it is truly like dealing with chronic illness, until you have been through it yourself. Again, I wouldn’t wish that on anyone. I thought I would share some images that depict what my days are like with Fibromyalgia.

It is usually a day that you have the most on your “to do” list. Very inconvenient.
Fibro and Arizona do not get along well. At all.
The batteries are never at full charge.
More like 13, but who’s counting?

Be well, my friends. God bless you.

With love,

J💜

Accepting Limitations

When pain exists every day, I can almost guarantee that any extra activity is going to exacerbate symptoms. Shoot, some days taking a shower is considered over-doing it. This is just from chronic low back pain and my dear frienemy, fibromyalgia. Add in confused sweat glands (autonomic neuropathy) and a heart that likes beating too fast (POTS), and I’m potentially a disaster waiting to happen. I know that if I overdo it, I will be completely wiped out. I’ve also learned that my psychogenic dystonia episodes are more likely to kick me in the butt if I do too much. It’s not just the mental stress that brings about episodes; when my body is physically stressed, it says okay, we’re shutting down now. Except, maybe I’m more like a robot that glitches before it powers down. After all, I do have a battery and several screws in my body…

Back to my point…I’m learning to accept that I need to take breaks and to cut myself some slack when I don’t accomplish what I intended. For example, the other day I was bouncing between laundry, cleaning the kitchen and other chores. My son said, “Mommy, you’re doing a really good job, but you need to stop and relax the rest of the day. You’ve done too much the last couple of days. Stop before you have an episode”. Well, I partially took his advice. I continued to do a couple more chores and then relaxed. The kid is pretty wise, because sure enough later that night, I had an episode and oh was it a doozy. I was coming in from the garage and as I reached the door, I just stopped in a lights on, no one is home kind of way. Once I had my focus back, I tried to take a step with my right foot. Instead of planting on the ground, my foot tightened, turned inward and that leg drew up towards my chest (maybe I’m a flamingo?). The more I tried to put it down, the further up it drew. My back, left hip and leg tightened in a way that twisted my posture. So there I was standing at the door, clinging to the door knob and the garage shelf, trying to figure out how I was going to get inside. Can I hop on one foot? Can I make it to the ground and try to crawl or scoot? These are terrible ideas. I opened the door the best I could without falling and hollered for my daughter because I figured she would hear me best (the boys were playing video games). She checked on me and ran to get my husband, who had to awkwardly carry and place statue me on the couch. By the time we reached the couch my hands and arms had tightened up and pulled inward too. I told my husband I would be fine and that I would just let it run it’s course. The muscles have to tire out eventually, and they did over an hour later. My family is really good about trying to help massage or trick the muscles into letting go, but they have to be careful as it can be extremely painful. Sometimes it is best to just leave them be. Needless to say, once everything relaxed I was extremely sore and exhausted. On the bright side, my daughter kept me company during the episode by watching my all-time favorite movie as a child, Labyrinth. Side note: she said it was good and she didn’t seem to mind me reciting the entire movie.

I have a long list of things I want to accomplish today, but I think I finally learned my lesson. Instead of trying to complete all my chores at once and then shut down, I’m forcing myself to take a break between each task. I’m using that break time to play a game on the computer, write this post, or anything else that will allow my mind and body to de-stress a bit. If I don’t complete my to-do list today, it’s okay; those things will still be there tomorrow.

I hope you are all having a wonderful week!

With love,

J♡


Here’s a sneak peek at the painting I’m working on.

If you are interested in seeing more work, feel free to drop by my page and let me know what you think. ☺