Article by Wendy McCance
I decided to write this article after talking with someone I know who has fibromyalgia. For a few years after I was diagnosed, I knew know one with this disease. I would search the internet to find out whatever I could about fibromyalgia, but I never found an article that talked about what daily life was like. I didn’t know if what I was experiencing was normal. Sometimes I felt like I was losing my mind between the frustration and symptoms I was dealing with.
When I spoke with my friend who was diagnosed, I realized that she was going through those same feelings. She just wanted to know that what she was experiencing was normal too. I am hoping this article reaches those who have asked themselves those same questions. Hopefully, my article will shed some light on what it’s really like.
Friday was a big day at our house. My oldest daughter was getting ready for prom. After dropping off the kids for school in the morning, I ran around the house like a madwoman cleaning up and making the house look presentable for the company coming over later.
I picked up my daughter from school at 10 am. She had a half-day and would spend the rest of the afternoon prepping for her big night. I ran to the florist to pick up the boutonniere, got my hair cut, came home and colored my hair to disguise the gray roots that had begun to pop up and polished my nails. Sure this was my daughters big day, but I would be in some pictures with her and wanted to look my best too.
My other two kids came home at 3:30 pm. My second oldest daughter was going to celebrate her birthday which was the same weekend as prom by going out shopping and to dinner with a friend. Her friend was then going to sleep over.
I carpooled to drop off and pick up my daughter from her shopping excursion and also stopped by her friend’s home to pick up her sleepover gear.
In between the carpooling, my oldest daughter had left for prom. We had taken pictures and entertained family.
My son ended up being asked to go play baseball on a team short a player so he took off for his game. When he got home, his friend came over and they hung out and ate some pizza.
By the end of the night, I had a horrible headache, I ached everywhere, and I was dying to hop into bed and get some rest.
I woke up exhausted, sore and feeling like I had been run over by a truck. I had electrical shocks in my legs, my joints ached and standing hurt my lower back horribly.
Today was my younger daughter’s birthday. She got up and dressed and would be going out to lunch with her grandparents. I talked with my oldest daughter and got the scoop on her prom night. She had a fantastic time.
While my second oldest daughter was out to lunch, I took my son shopping. He had grown out of his shoes and needed new ones. He had also grown out of his summer clothes and with the now warm weather, was in desperate need of shorts and shirts.
We went to 5 stores, but got everything he needed. I was in bad shape and knew I was overdoing it, but I was happy to have gotten the shopping done that my son needed so much.
We came home and I went straight to bed. I couldn’t stay awake and hurt so much that I was hoping the sleep would relieve some of my pain.
I slept for 2 hours and then got back up to take my daughter shopping. She had gotten home from her lunch date and needed new clothes as badly as her brother. We were able to find all she needed at one store. I was grateful because it was really all I could take. I didn’t want to put off her shopping because I had promised her we would go, and I felt bad that we weren’t doing something more for her birthday.
When we got back to the house, it was 5:45pm. I still had to make dinner and I knew it was going to be a struggle. My son had a baseball game that I was going to go to, but my husband was with him, and I just couldn’t do it. There was no way I was in any condition to drive and I knew if I didn’t slow down, I would crash for days afterwards.
My son came home at 7 pm and we had chicken and rice for dinner. He had a great game and I felt horrible to have missed it. I was in bed by 9 pm and was feeling lucky to have a husband who was willing to rub my feet to try to loosen up my now tightened muscles.
I woke up today depressed. I tried so hard to capture all of the important moments in my kids lives. I tried to get the errands done so that the kids had what they needed. I tried to be as involved as possible with the events that meant so much to them. On days like this, I just want to sit in a corner and feel sorry for myself. The frustration of my disease is worse than the symptoms.
The kids are going over to their grandmother’s for the day to visit with cousins and celebrate my daughter’s birthday. It’s a kid event that the parents aren’t invited to. The kids love it and have special memories of these birthday celebrations.
My husband wants us to go out to his parents house for a day of swimming and barbecuing. It’s in the 80’s today, gorgeous and sunny. I want to go hang out so much. It sounds like a fun time. I tend to feel housebound and a bit suffocated by the amount of time I end up sleeping or sitting on the sofa resting.
I will go this afternoon because I know I don’t have to do much other than sit. I am still anxious though. Will I be a downer because of how I feel? Will I end up feeling even worse by doing yet another activity?
Currently, I could easily slide into bed and sleep all day. My hands are aching and typing this article is painful. My legs and feet feel numb, sore and truly like I had been overdoing it by working out at the gym. My head feels foggy and my eyes hurt when they move around. I feel like I am supporting something heavy on my shoulders and my neck, upper back and shoulders feel like I have been frozen in one position for too long. Basically fibromyalgia sucks!!
When I spoke with my friend the other day, I got to see first hand what it looks like from another perspective when you hurt and are trying to walk. I told her the way she was walking looked just like what it was like for me. I have to admit, I felt giddy seeing it. It was the first time I felt validated for the way I felt and moved.
My friend asked me how I did all I was able to in a given day. I told her it was because I had to. I have kids that I don’t want to let down. I don’t want them to feel burdened around me. They need to grow up with as much normalcy and as little stress as possible.
My kids are what pushes me further than I think I can go. Sure I will crash, but they have given me a huge gift. They are helping me to live as normal a life as possible. I often feel moments of bitterness because I can’t have the kind of days I want. I want to really make the most of each moment and have fun.
When you look at my weekend and the activities I did, it doesn’t sound even half as crazy as what most of my friends do most days of the week. For me it was a major effort just to do some carpooling and shopping. That’s what I hate most about fibromyalgia. It’s not the pain and exhaustion as much as the mind games it induces. I feel like I am leading half a life and I desperately want the rest back.
I have learned that life doesn’t always give you what you wish for. It’s taking what you are handed and finding ways to make the most of what you have that makes the difference. Instead of dwelling on what I can’t do, I try each day to focus on what I have accomplished. I feel good about the way I am able to take care of my kids and the stubbornness of not letting this disease rule my life. Honestly, your chances for a life of happiness is all in your perspective and what you WILL do with what you have.
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