“Invisible Illness” Emergency Room Trip

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Shop Local! Dress: Miss Claudia’s; Shoes: Feet First; Pedi color: Native Polish, Beignet Babe

{Find a typo, and I can’t even.}

I think I look smokin’ in my new Mardi Gras dress. However, I’ve been in a full body flare for over 48h. Widespread pain with pins and needles. On fire. It’s dire.

Strangely none of the 18 fibro points hurt. The pain meds protocol put in place by my pain doctor’s office last year is not working, yet. (I increase Neurontin to 3x/day and add a high dose of Robaxin, a muscle relaxer, until flare ebbs.) This picture is the most wonderful/terrible example of what #invisibleillness looks like. I’m way too fucking good at faking it, as are so many of us #spoonies.

How did it happen? A combination of my Myofascial Release (MFR) practitioner overdoing it followed by a poor night of sleep due to circumstances beyond my control. Obvi no more MFR until I learn more re what my practitioner should do differently. I’ve seen her for almost a decade and this has never happened before. Read here why MFR is important for fibro.

Last night I couldn’t sleep. I took more meds plus my 1:1 pen. I watched TV. I waited. I took more meds. (You can take up to 3,600mg Neurontin a day. On normal days I take 300-400 in the morning and 700 at night, which gives me a lot of wiggle room on bad days.) I finally got in bed around 2a and decided to read for 20 minutes but that if I wasn’t asleep by then I’d Uber to the ER as I’ve done alone quite a few times in the middle of the night. I fell asleep. Woke up this morning to my body screaming.

Emergency Room Visit #525,000

 

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I’m unfortunately no stranger to my hospital’s ER, which does a truly excellent job. I was heard. I was cared for. I was treated with respect. I was also in and out quite quickly. I was given oral Valium and an IV of saline with Toradol. I was told to continue my pain meds protocol. The IV helped some (the doctors agreed that reaching 100% “better” wasn’t going to happen while there), then I came home for a long nap. Woke feeling shitty. More meds.

Parenting Woes & My Fibroversary

Fibromyalgia takes so much from me, and from my family. I miss out on a ton. My daughters worry, and their worry pierces my heart. They’re so young. They miss me going to birthday parties with them and taking them places no matter how loving, empathetic and amazing Husband is and how much he does for them, which is A LOT.

Thankfully these flares have thus far always come from a specific reason, like overdoing it or bad sleep. They do go away. And my daughters always wind down for sleep with us talking through the day’s events plus snuggles and back rubs. They’re not invisible to me, even at my worst.

I’ve always been good at taking care of and loving myself. The first anniversary of my fibro diagnosis is this month. So much further to go, but today even as I writhe in pain, I remember how far I’ve come.

13 thoughts on ““Invisible Illness” Emergency Room Trip

    1. YUP. We have sitter help and my husband is flexible with work when can be, and an understanding that they can come hug or snuggle me or watch the Kindle in the bed almost any time, but… It’s not what I want for them or of course how I or any of us pictured our lives. Onward, always.

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    1. It DOES SOooooo confuse people!!!! It’s almost comical. A lot of the time I can’t answer honestly and want to change the topic because my kids are around. Depending on my mood there’s either one topic and one only, my health, that I want to talk about, or, 100 other things I’d rather talk about.

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  1. I woke up this morning in agony and looked grey, but knew I had to meet someone for lunch and couldn’t cancel again! So on went the blusher and lippie and then came the usual “you’re looking well, today”. Don’t you just want to scream?! I get the parenting thing too – my 3 all had to grow up so fast and I hated constantly relying on others for lifts to sports and parties, yet being unable to reciprocate. You do look stunning in those sequins though!!

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    1. Thank you much. I’m impressed you made it to lunch and also know all about the canceling over and over. You can tell I’m not feeling well if either A. I have on no makeup and still have dark circles/zombie eyes B. I have on A LOT of makeup! How do your 3 feel about growing up fast? I wonder if each child has a different take on their childhoods?

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  2. I so feel this. No one sees me when I’m at my worst, except my poor husband and my pets.

    I’ve never had MFR, tho it’s been suggested, since I have fibro (among other things). I just don’t have the energy to find someone to do it!

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    1. Thank you, I’m glad/not glad it speaks to you too. MFR has proven to be really good for me, with the exception of my most recent appointment–and my practitioner follows Jon Barnes’ method so I don’t think of it as “her fault.” It was MFR + bad sleep related to young kids :(. What city are you do you live in? I can look for someone for you. Happy to do it.

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