I find it hard to be social now. Most people I went to school with and who are not in my daily circle would probably be surprised by that admission. As a young person, I was a happy cheerleader and drama student known for my laugh and tons of energy. I described myself as more Energizer Bunny than couch person.
These days, I avoid social situations, because I don’t want to explain the forgetfulness, pain, and exhaustion that comes from living with fibromyalgia.
Really, I try to leave the word fibromyalgia out of conversation except with my husband.
Fibromyalgia is a central nervous system disorder characterized by chronic pain that is thought to be a result of overactive nerves.
In a person suffering from this disorder, the main symptom is pain that is out of proportion to stimuli. The pain may also roam and have no known source.
In fact, occasionally pain shoots through different parts of my body, and I cry out, so it can be disconcerting to be around me. Fabric clothing tags feel like little daggers cutting into my neck.
There are many days I feel like I have worked out and have the “day after the day after” muscle pain, but without the actual work out. One day my left arm is screaming and the next day my skin aches, or I have a migraine. The pains in my hands, elbows, and neck are the worst, so I alternate heat and ice at night to help with the pain and swelling.
Fibromyalgia symptom number two that is so debilitating for me is the complete exhaustion after doing the simplest thing.
It makes it difficult to participate in social or active things, so I always schedule a week in between events of any kind if possible. It is not that I can’t do it, it just takes a lot of effort.
I try to save the incredible effort required by events for my daughter, grandkids, or my husband.
For instance, in spite of fibromyalgia, my husband and I went to Disney World with our daughter and family. We built in half-day rests, and we chose a cooler time of year with less people to help me cope. My daughter took great pains to avoid overload, but it still took me weeks to recover.
Exhaustion and pain make me grumpy, so I facilitate a pleasant restful atmosphere at home.
Today, I am sipping hot tea wearing extremely comfortable clothing, and I am curled up on the couch typing. I’m drinking water, took my ibuprofen, vitamins, and Benadryl. The temperature is set at 65-66 degrees Fahrenheit in winter (69-71 in summer)to help with pain, because heat makes my symptoms worse.
My husband just asked what I am writing about, so I tell him and he responds with a joke. He said he dreamed last night he was a MUFFLER. I said “Oh yeah?” and he responded that he woke up EXHAUSTED. I laugh out loud and write ” It is paramount having a supportive partner in life.”
What I find most difficult other than pain or exhaustion is following a conversation and responding like a normal person.
Many times I ask the person I am talking with to repeat their last statement. I also have to think about what I am going to say, and try to review in my mind what I actually said, because sometimes it doesn’t come out right.
Mostly, I forget what conversations I have had with different people recently. It probably seems like I don’t pay attention, so personal conversation is maddening.
To combat the information overload and forgetfulness, I keep my circle very small. It is easier to keep up with details of just a few people.
As someone who likes to simplify, I would rather write than talk because when the words get jumbled, I just pause and go back to it later!
As a mom and grandmom though, I work it out. I get enough rest, I guard my time, and I spend my energy on my immediate circle.
When I was first diagnosed, a dear friend sent me a book on fibromyalgia and it helped me understand some of what fibromyalgia is all about. Whatever your struggle, educate yourself and find some coping strategies that work for you.
You can feel better. Find what works for you and keep doing it. Send this post to your people who don’t understand, but don’t give up.
Get rest, reboot, recharge, and get back in there.