The Cost of Hanging Out

I have a medical condition called Fibromyalgia. Not much is known about this condition which causes widespread pain in your soft tissue and joints. It is also a diagnosis of last resort. What that means is, many other conditions have been tested for and discarded. What is absolutely does not mean, is that Fibromyalgia is not real. It takes years of research and a measurable number of complaints to name a condition, even if many have been living with the symptoms all their lives. Not having a name for something doesn’t wipe it from existence.

The most common symptom list that I think covers them well is the one found on WebMD. No, I don’t nor do I recommend, diagnosing yourself on a website, but it does have good information to supplement all the info you didn’t catch when your doctor diagnosed you. So, back to that symptom list. It includes:

• Muscle pain, burning, twitching, or tightness
• Low pain threshold or specific tender points
• Draining fatigue
• Trouble concentrating and remembering, called “fibro fog”
• Insomnia or not sleeping well
• Feeling nervous, worried, or depressed

Lucky me, I have all of those. I have had them for almost as long as I can remember, but a definitive diagnosis was years in the making.  One of the many things I have had to adjust, even more the older I get, is how active I can be. My active list isn’t limited to exercising, which is what people tend to think of when you use the word “active”. My list includes household chores, numerous errands, exercise, field trips, and hanging out with friends. All of these things can inadvertently send me to bed for days or more. That is where I find myself today.

Yesterday, family friends had a small gathering at their home, it included the whole family. Since this was also a fireworks viewing party, it involved standing outside watching the kids set off personal displays and walking down the block to view the city’s fireworks display in celebration of America’s Independence Day. Today, I can barely function. My whole body is a flaming, open sore and I know that nothing much will be done by me. I have a lot of guilt about the times I am experiencing extreme pain and can’t push through my day. It doesn’t happen to everyone, but many people with chronic illness suffer from depression and anxiety and guilt. I feel bad that the cost of three hours of a low-key house party has me curled up in bed wishing for strong pain relief. I also wish I had some magic answer here. I don’t, me and many others, have to live this life daily. We constantly battle the want to do things with how it may affect us and what we absolutely need to do.

I am learning to manage saying no when I am already low on spoons. You can read about the famous spoon analogy here. It is the equivalent of having a low emotional or physical bucket from which to pull. I also am working on balancing having fun and what it may cost me. Now to work on the guilt of being chronically ill and I may just come to grips with my limitations yet.