If you have fibromyalgia, you certainly know that daily life can be challenging, to say the least. Simply learning how to live a new life with fibro and saying goodbye to my old life has been such a struggle. Some days I think I have really have things figured out. Then there are the days when I feel like I’m no better than I was when I was diagnosed. You know how you feel when you have the flu and you feel horrible and everything starts to fall apart because you can’t keep up with things? The laundry piles up, along with the dishes and the mile-long list of things that you keep putting off. When you finally feel better, you end up spending so much time catching up. Can you imagine feeling like that for days, weeks, and even years? The to-do list can get pretty darn long. It is pretty darn long.
Now let’s add insult to injury and throw personal relationships into the mix. Sometimes it is so hard to keep up with the kids that I feel like I’m drowning. I know that is a regular sentiment among parents. Maintaining a so-called regular relationship with kids is somewhat of an oxymoron. One day the kids are great and the next day we can’t see eye to eye on a single thing.
How do people with fibro handle the other relationships in their life? What about parents, siblings, and friends? In my experience, these relationships have been so difficult to maintain. I never know from one day to the next, when I will feel fine and when I will be overwhelmed with fatigue and anxiety. It’s hard to keep a commitment. When I was first diagnosed, I let my family know. Of course, they were very understanding, and to be honest most of them already knew that something was wrong. I had been sick for some time and it was hard to hide. I was certainly tired of making excuses. After the shock of the diagnosis wore off, some family members still had a hard time understanding that I have really bad days. Understandably so, they get fed up with the places that I don’t want to go or things I don’t want to do. I have a list that’s a mile long of promises that I didn’t keep, or holidays that I didn’t participate in. Not because I didn’t want to, but because I physically couldn’t. They don’t get that sometimes I just can’t. I have to say no-and I do.
It’s hard to step up and say no to something. Partly because I don’t want to let others down, but also because I don’t want to let fibro win. Practically every bit of energy that I have goes to taking care of my kids. They will always come first. I know there will be a time when they won’t need me as much, so right now I plan to give them the energy that I do have. I know that me having fibro has had a big impact on their life so I might overcompensate sometimes and I’m ok with that. If given the choice between my kids and someone else, I will choose my kids 99% of the time.
My family isn’t wrong. I would have a hard time understanding how someone can have so many bad days. I would be a bit skeptical of someone who cancels plans with me and then is out the very next day doing something else. The unfortunate part is, I can’t give them a reason why this is so. I don’t know why I am fine one day and can’t get my act together the next. If I don’t comprehend the way of things, how can I expect someone without a chronic illness to understand?
I don’t have the answer. I do know that plenty of people with chronic illness are often misunderstood. Why am I rambling on about this? Well, I want people who live with fibro or any other chronic condition, to know that relationships are difficult for me too. It’s a daily struggle and a constant juggling act. Here’s my unsolicited advice to anyone with fibro: do what you can and say no when you have to. That’s it. You aren’t crazy, you aren’t selfish, and you aren’t lazy. I want to hear from you. How do you handle relationships with family and friends?