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Why I Haven’t ‘Gotten Used to’ My Fibromyalgia

I had my fibromyalgia diagnosis over a decade ago, and have had the symptoms my whole life. So when will I get used to it?

In some ways, I’ve always been used to it because it’s all I know. However, I still have trouble with feeling upset or disappointed at the things I can’t do. How long does that take to go away? Does it ever go away?

Throughout day to day life, things are pretty routine (we have a 4-year-old, so it has to be organized around here), but every time something out of the ordinary happens, I am reminded that it’s different for me. If I’m attending any kind of public event or show, I need to plan ahead to ensure I will have a seat. I have to make sure there are no long distances to walk from parking lots or stations. I check for lifts if it’s not on a ground floor. I make sure I only go out when my husband is off work the following day because I know I will not be able to move much and will have loads of extra “payback” pain.

I’m sure many of you may be familiar with these obstacles, but have you gotten used to them?

When we took our son out a while back to a place with go-carts and little tractor rides, my husband and sister had to go with him while I watched from the sidelines. On that particular occasion, it hit me pretty hard. It was as though I had forgotten I couldn’t do certain things, and being reminded was a bit of a gut punch (even though I was happy to see the others so happy).

Don’t get me wrong: I have great support and help from my loved ones. I just always want to experience the things that are not physically possible for me.

Still, I do practice gratitude every day for the privilege of being able to do what I can do and for the people I am lucky enough to have in my life. It’s not that I feel sorry for myself – I just seem to keep forgetting my fibro restrictions.

As I sit here on the sofa, I honestly think I could go to that show with my friends, do that walk with my family and help my parents with their shopping or cleaning every week. Then it pops up and stops me in my tracks: You cannot do that! You have fibromyalgia and it won’t let you!
I admit to being fairly stubborn, so perhaps I’m subconsciously refusing to “give in.” (Maybe.)

My life is wonderful and I’m mostly very happy despite the pain and fatigue. I think I need to just tell myself that I am enough already and I have enough already.

So, if you are also chronically ill and find yourself periodically unaware of the many challenges that come with it (thanks, fibro!), how do you deal with it when you’re reminded of them? As I mentioned earlier, I think gratitude is always a good place to start, so I would recommend starting there first. I guess it’s about finding a balance between not giving up on life and it’s endless possibilities, and not pushing ourselves too far, too often.

Thanks for reading and sending love to all. x.

Getty image by Marta Ortiz.