Depending on how severe our fibromyalgia (FM) symptoms are, and how many other physical issues we’re dealing with, we pay a high personal price. By that, I mean this illness is a very demanding task master that keeps us from doing things we used to enjoy.
The pain of sitting too long keeps me from taking long car rides. It’s been over five years since I was able to make the seven-hour drive to see my mom and other siblings. I worry that when my mom passes, I won’t be able to make it to her funeral. My fatigue, in particular, keeps me from enjoying vacations of any kind.
Some of you may have grandchildren who you’d like to play with and take on outings. (I do not have any grandchildren yet.) If they’re young, you can get away with reading stories and playing board games. As they get older, it becomes a challenge to find things they will enjoy and that you are able to do — thanks to the limitations forced on us by FM. (If this includes you, please share how you deal with this challenge in your own life.)
My son is getting married in a couple of months, and I worry that my FM will prevent me from being able to dance with him, sit through the ceremony and reception, etc., without needing to lay down. It’s a dilemma for sure. I don’t want to be a disappointment to him, or his beautiful bride to be.
Gone for me are the days of sitting through a concert or a movie. Of course, one of those theaters with uber-comfy chairs that serve food might entice me to give it a go. I’ve had tailbone pain for years, and it’s exacerbated by sitting for too long. My form of entertainment these days tend to be Netflix, Hulu, and Amazon Prime.
Then there’s the job issue. FM has kept me from working in the medical field, which was my dream job. The question becomes: “Should you work full-time, part-time, quit, file for disability, or what?” I guess all that depends not only on your FM symptoms, but your age and the type of profession you’re in.
I have a good friend, Christy, who recently moved across the country with her husband to take a full-time job as a nurse after spending the previous year or so in bed. I’m so proud of her, because I know this is not easy for her with FM. I have another friend, Kelly, who had to leave her real estate job of 17 years because of her illness. She is now helping others with chronic illness to go from coping with their diagnosis to working from home. Both of these ladies have my utmost respect. My FM keeps me home most of the time, so I make use of that time working from bed.
I don’t know about you, but I struggle with lengthy phone conversations. Don’t get me wrong, I love to talk on the phone, but the fatigue just wears me out. Conversations always initially energize me — do they do that for you? For me, it seems that emails and text messages are the easiest ways to communicate. I’m thankful for caller ID, because if it’s someone I know who is chatty, and I’m not up for a conversation, I can call back when I’m able to. I need to watch my energy and not overdo it.
I would love to hear your story and ways you cope with your FM. It may help someone else to hear about it, too.
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.