Today I got up, showered and went with my trusty caregiver to do a couple of errands. First to Verizon to find out why my phone is acting wonky. They ordered me a new phone and the USB reader I needed was 30% off. Great!
Next we went to Rite-Aid where I picked up a few odds and ends. While I was there a friend called asking if I wanted to sit in on a health insurance consult she was having and I enthusiastically went. (More about health insurance later!)
Fast forward a couple of hours and I hear the insurance agent say, “We’re losing Deb!” I had been about to drift off to sleep. I was so embarrassed. My friend explained to him how much time I spend in my pajamas and just how fatigued I get.
For me the fatigue is the most difficult thing I have to deal with. I barely got off my back-end today, yet I feel like I’m trying to walk underwater. Whole days or weeks go by like that. I have always been active-I raised four children, worked as a nurse and with a husband in the military, we moved a lot. Now I am frequently too tired to get myself out of bed.
My head understands that traumatic brain injury, fibromyalgia and chronic fatigue syndrome all cause serious fatigue. My heart, however still wants me to be up and busy all day long.
Today was a pajama day. I slept a little later than usual, ate when I felt hungry and piddled around with a necklace I started making last night.
Making jewelry is my passion. I make a piece of jewelry almost every day. Not only do I love working with beautiful beads, but it is also an activity that I can usually do even on my worst days.
Every day I have a headache that I liken to “being hit in the back of the head with a two by four.” The headache is in addition to the muscle pain of Fibromyalgia. I have found that if my mind is engaged, I can’t think about the constant pain at the same time. Making jewelry is a perfect activity for me. And, because I am passionate about jewelry-making I imagine the joy I feel also helps release all those feel-good endorphins we have.
There are times when I feel too fatigued and/or painful to be active; for those times I read or work on a page in one of my adult coloring books. I’m not suggesting that these ideas will work for everyone. I’m just sharing the ways in which I can hold the pain at bay while feeling like a productive adult. I feel that finding appropriate activities is an important part of dealing with chronic pain and fatigue.
Do you have any ideas you’d like to share? I would like this blog to function as a community of sharing. Please feel free to leave comments.
Since pulling off the Christmas dinner, I have also done a New Year’s dessert social. The dessert social was just as successful as the dinner-lots of people chatting and laughing. Once again I felt a great deal of joy as I watched my friends and neighbors enjoying themselves.
Now I’m painful, fatigued and a little down. The joy is still there; I just need to take care of myself. I need to be gentle with my ever busy mind and my body. I’ve been in my pjs for the last three days, doing a little of this and a little of that, watching a lot of “Scandal” episodes.
It has been 11 years since I suffered a traumatic brain injury and subsequently Fibromyalgia. The Chronic Fatigue Syndrome started four years later. After all that time I am still learning how to be gentle with myself. I often fuss and fight it and end up doing the “should, could, would” spiral.
How do you find ways to be easy on yourself? How do you get into the mindset of recuperation? I would love to get your feedback and I know that many others could also use some new ideas!
There’s an old saying that states,”What doesn’t kill you makes you stronger.” Today I’m not so sure about that. I volunteered to plan, shop and cook a Christmas dinner for all those at my apartment complex who had nowhere to go for Christmas this year. Though a friend helped me (she has Lupus!), I way over-did it. I hurt from head to toe. Even my hair hurts! I’ve felt like a lump all day. So what makes this misery worthwhile?
The dinner was a success; it was better than a success. And, the reason I feel it was such a success was not because my planning, shopping or cooking skills are wonderful, but rather that my fellow tenants were so happy and grateful to have a hot, home-cooked meal, surrounded by friends and neighbors on a Christmas day when they thought they would spend the day alone in their apartments.
The joy I got from all those happy, talking, laughing people will remain with me even though I’m painful, foggy and fatigued beyond reason. That joy will be my constant companion through the days or weeks it takes me to get back to “normal.”