Tuesday, February 24, 2015

Having Fun and Paying the Price

Hubby and I attended a birthday party for the 2 year old daughter of his cousin on Sunday. I knew the party would be full of triggers as it was at an indoor carousel and it was a birthday party for a 2 year old but I really wanted to go anyway. It was a great excuse to get together with some family and do something we hadn't done before. Fortunately, when the day arrived, I wasn't in rough shape so we actually got to go and enjoy ourselves.

We got to chat with family, admire the cute little birthday girl in her party dress, eat cake and ride the carousel. It was bright, loud and the movement of the carousel made me a little nauseous. Thankfully the party was short and before long we were back home. I knew I would have to pay a heavy price to the migraine and fibro overlords but I felt like the fun and the laughs were worth it. 

I woke up Monday morning feeling terrible. My whole body hurt and a migraine was already in full swing. The morning was a complete loss as I waited for my rescue meds to kick in. Then I spent the rest of the day worn, loopy, exhausted and sore. At one point I logged onto facebook and saw the pictures from Sunday's adventure and was struck by the contrast between how I looked and felt for those 2 hours and how I looked and felt after. 

I never post those pictures. Well, I never take those pictures. The ones that show me in lots of pain with no make-up, no effort put into my hair, wearing my loose lounge clothes, hiding in the dark with a pillow, blanket and chihuahua. My friends and family see this:

Besides hubby, nobody really sees this:

Even if they did see me like this, I don't think they would actually see all the pain, sensitivities, exhaustion and brain fog that I was feeling yesterday when I took this picture. As I thought about the contrast I started to question if I ought to be doing a better job to show this side of myself to my friends and family, a question I ask periodically. I thought about it last night and some more early this morning when I should have been asleep. 

The conclusion I came to is that capturing the terrible moments on film and sharing it with all my family and friends on facebook is not something I want to do for 2 reasons. One. I don't think anyone wants to see that. Two, I don't think the visual of me feeling terrible can convey just how terrible I'm feeling. BUT, I do think I can do a better job educating my family and friends about the price I pay for the fun they see me having.

I honestly don't think they have any idea that every time I go out I pay a price. The more I do, the bigger the price. And that's if I even feel well enough to go out and do something. I can't schedule my pain or even predict when it will take me out. When I'm out and having some fun, I am still dealing with either or both migraines and fibromyalgia stuff. I smile when I'm out with people, even if I'm feeling bad. 

My concerns remain about being overly open with my friends and family on social media about the level of disability I experience. I don't see that changing anytime soon but I would like to use Migraine Awareness Month (June) to open up a little more and give them a glimpse. I'm not entirely sure how that will look but I have a couple months to think about it.

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