My cousin got married this weekend. Nearly all of my family was there. It looks like the wedding was a big celebration/party/family reunion and everyone had a great time. Everyone except me. I wasn’t there. When you have fibromyalgia and chronic pain, it is hard — if not impossible — to attend big events like a wedding. You can’t be spontaneous with fibromyalgia. You can’t plan on being at an event months in advance. You never know how you’re going to feel on any given day, so it makes it really hard to make plans. I would’ve loved to see all my family members. I haven’t seen some of them in 6 years. But I couldn’t. Because I have fibromyalgia.
When you suffer from chronic pain and fibromyalgia, it takes a ton of planning before and after any event you attend . You can’t just RSVP as a yes and when the time comes hop in the car, go to the location, and have fun. Nothing is simple with fibromyalgia. My cousin’s wedding was in New Jersey. I live in Salem, Virginia. It would have been a 7 hour car ride, plus however many stops I needed to stretch, for my husband and I to attend. A hour’s car ride is the maximum I attempt right now. Even though my husband does all the driving, a car ride is draining for me. It leaves me in more pain than normal from sitting for so long. Long car rides drain my energy too. For me to go to the wedding, I would’ve needed us to drive up 2 days in advance so that I had the whole day before the wedding to rest and try to bring the pain back down . Sitting through a wedding without being able to get up and stretch would cause my legs and back to cramp up and hurt more. I’m sure I would’ve managed one dance with my husband at the reception. Between a dance and finding my cousin, the new bride, and her new husband to congratulate them, I would’ve been exhausted and nearing the end of my rope. There is no way I would’ve made it through the big party/family reunion the reception was. Everyone had a great time. I would’ve been exhausted. My head would’ve been pounding from all the noise and excitement around me. The lighting would’ve hurt my eyes and made my headache worse. I would’ve spent a lot of time sitting at a table, probably looking like I was annoyed when actually I would’ve been miserable and in a lot of pain. I would’ve left early because of how much pain I was in.
The planning doesn’t stop once it’s time for such an event if you suffer from chronic pain and fibromyalgia. You have to plan for how you’re going to feel after such an event. For me, I would’ve been exhausted and in a lot of pain from the wedding and reception. I would’ve needed a whole day to recover before a car trip back, but I’m sure we would’ve driven back the next day instead of spending more money on another night in the hotel room. The trip back would’ve been even worse for me than the trip home. It always works that way for me. I would’ve been incredibly miserable once I got home and I’m sure I would’ve needed 2-3 days to recover before I could go back to work. My 11-week leave of absence wiped out all of my PTO (vacation) time. I haven’t accrued much time since returning to work. I accrue it at a slower rate now that I’m only able to work 30 hours a week. I often have to take a few hours here and there for my bad pain days when I need to leave work early and go home and sleep. I do not have enough PTO to take 3-4 days off work for travel to and from the wedding and the recovery time I would need.
Attending this wedding would’ve been fun if I was a normal, healthy person. But I’m not. I have fibromyalgia. Sadly, just about every part of this wedding would’ve caused me extra pain. The drive would’ve been the worst part, but all the other small stressors of an event like this would’ve spiked my pain unbearably high.
I used to attend events like this and travel with my husband and if it made my pain worse and made me exhausted, oh well. I ignored it and pushed through. Now that I know I have to listen to what my body needs and respect my limits, I’m struggling to learn how to go to events like this. I struggle with the planning before and after. I struggle with planning any trip or activity because I never know how I’m going to feel on any given day. It makes me want to give up and just not do anything like this. But I refuse to spend my days only at home or at work. There’s so much else to see and do and I refuse to miss out on everything because I have fibromyalgia. I’m learning my limits and what activities I can and can’t do. I now say yes when friends invite me out to dinner instead of no. I’m better about planning activities within the next month. I know how I feel now so I bet I’ll feel similar in the next few weeks. I haven’t yet figured out how to plan out activities or travel further out than that. I’m working on it.
I’m learning how to live again and have fun again even though I have fibromyalgia. It’s hard. It’s like chronic pain negates everything you’ve learned in life. You have to unlearn habits that are now unhealthy for you. You have to figure out what you need to do to get through each day, to keep working, to stay close to family and friends, to be a wife, to be a friend, to be healthy. Chronic pain forces you learn new things, new ways of doing things. I know I can do all the things I used to do, I just have to figure out new ways to make those things happen. I’m not going to figure all this out overnight. It’s something I work on a little every day. I learn something new about living with fibromyalgia every day. Maybe I’ll make it to the next wedding in the family. I’ll be stronger and know a lot more about myself and my new life with fibromyalgia by then.
I will learn how to live and have fun again even though I have fibromyalgia. I will not let fibromyalgia rule my life and determine what I do every day. I control what I do, fibromyalgia does not control me. I don’t have all the answers about living with fibromyalgia, but I’m working hard to find them. One day I’ll figure everything out. One day…