My Day, The EM Edition
It’s 66 degrees in here. The fan’s on high so I can sleep through the night.
I wake up.
My feet cool and I lower the fan to level two. My forehead goes numb.
You can’t drink water like that.
But you can work.
My feet stop flaring and I scream Hallelujah and turn the fan off. It’s still cold in here.
Eating requires unbuttoning.
My hand gets hot.
So I elevate it. And whine.
Only I need to work. So I type. And it flares. I pout.
Lather, rinse, repeat.
Speaking of sleeping through the night in my frigid room, which are you better able to fall asleep in: a warm room or a cool one?
*I have no idea why these photos aren’t clear. I think my room was too dark, but I was burning so I couldn’t get up to turn on another light.
*The red on my hand is the flare.
43 comments
cool room. really pissed at EM.
[Reply]
Tracey Reply:
April 6th, 2011 at 9:55 pm
Me too.
[Reply]
You need a snuggie that somehow involves your face – like a ski mask? Hehe. Sorry to hear about the EM flare. I love to sleep in a cold room so I can bundle up.
Also – I sleep with a white noise machine because Leo hates fans and I love the buzz!
[Reply]
Tracey Reply:
April 6th, 2011 at 9:55 pm
That would be a hilarious look–Snuggie and ski mask on. Ha ha!
[Reply]
Meh- sorry it was a bad day on the EM front… the constantly dealing with changing temps would drive me nuts!
I have to have cooler temps to sleep. If it gets too warm in the bedroom, I’ll just get angry…
[Reply]
Aww, well if you are trying to get us to feel sorry for you…I believe it worked! j/k, I know you aren’t, but I do still feel sorry for you.
I have to have the room cold, but be like, all the way under the covers either with the blankets tucked under my chin or sometimes I’ll just be totally under the blanket. This is whether its 100 or 10 outside.
[Reply]
Tracey Reply:
April 6th, 2011 at 9:56 pm
You discovered my secret plan behind this post.
[Reply]
I would like to kick life in the butt for you.
I can’t fall asleep hot or cold….it has to be juuuust right.
[Reply]
Tracey Reply:
April 6th, 2011 at 9:56 pm
Thank you. It needs a swift kick or two!
[Reply]
Dear Tracey’s EM,
You have proved your point. You are super powerful and able to do lots of burny tricks but enough already. Give nice Tracey a break and go burn someone else for awhile, like maybe one of those Jersey Shore kids although I am guessing they already have some burning just not in their hands or feet.
Sincerely,
Tracey’s Readers
[Reply]
Stephanie@MyThornsHaveRoses Reply:
April 6th, 2011 at 3:39 pm
I love this!!
[Reply]
Tracey Reply:
April 6th, 2011 at 9:57 pm
Heather, I don’t even know what to say besides thank you. You’re incredibly sweet.
[Reply]
I lol’d at Heather C’s comment. Beautiful!
I don’t think a simple “that sucks” is really sufficient. You poor thing…seriously!
On sleeping..I HAVE to have a fan on. Whethere I am hot or cold. It’s not a cooling thing, it’s a noise and an air circulation thing. And not our ceiling fan, I have to have my oscilating fan on. When I’m at a hotel I get them to give me a box fan…
[Reply]
Tracey Reply:
April 6th, 2011 at 9:57 pm
Thanks, Suzy.
[Reply]
Yuck. I really have nothing more than a how incredibly, incredibly unfair, to offer up.
I have a hard time sleeping anywhere, but definitely prefer too cold. Too hot and I want to crawl out of my own skin. I need noise to sleep though, for 2 years in college I would sleep with my ipod on.
[Reply]
Tracey Reply:
April 6th, 2011 at 9:58 pm
With an iPod on? I’d love to sleep to music. It’d come in handy in noisy hotels.
[Reply]
Oh no! I’m sorry honey! I like a cold room to sleep…I can’t stand to be hot!
[Reply]
Tracey Reply:
April 6th, 2011 at 9:58 pm
Thanks, Kelly.
[Reply]
I prefer to sleep in a cold room, but with a warm blanket. I really hope your doctor tracks down the cause soon!
Do you have any updates on that front yet?
[Reply]
Tracey Reply:
April 6th, 2011 at 9:58 pm
Uhhh, no updates. It seems to be getting worse but so far no news. Boo.
[Reply]
You poor thing. I sure hope a solution comes soon! I have to have a cold room due to chemo induced nightsweats for the past ten years
I am alive though so yay! 
[Reply]
Tracey Reply:
April 6th, 2011 at 10:00 pm
Woo hoo!!! (For being alive, not the night sweats, obviously.)
[Reply]
Ugh, I’m so sorry about your flare; it sounds awful. I hope you can get comfortable and find some relief from the temps.
I HAVE to sleep in a cold room, no questions about it. My fan is blasting right on me and I love it. I love to be cold and cuddle up under the covers!
[Reply]
Tracey Reply:
April 6th, 2011 at 10:01 pm
Thankfully, The Man agrees. He loves being wrapped up under the covers, too.
[Reply]
Oh me oh my.
That looks so very painful.
I always feel so much sympathy when you talk about your flare ups but seeing it is just mind-blowing. You truly are a hero for handling it the way you do.
I’m going to pray for spontaneous healing. (I hope you don’t mind) I never usually pray for total miracles but you never know.
Oh and me?
Cold room. Always. 69 degrees.
[Reply]
Tracey Reply:
April 6th, 2011 at 10:02 pm
Oh Missy, I would love your prayers for spontaneous healing. Thank you for your comment…for real.
[Reply]
I like a cooler room, but I hate being cold…so what is cool to me probably isn’t to others (like my fiance for instance!).
This kind of reminded me of what I am really struggling with right now, namely having so much I WANT to get done but being limited by on-and-off bouts of nerve pain, especially on the computer lately. I am going nuts about it!
[Reply]
Tracey Reply:
April 6th, 2011 at 10:02 pm
I feel for you, Katie. It’s a pain to have a million things you want to do and not be able to do it. It can drive you nuts.
[Reply]
I’m so sorry Trace , if I could take this from you I would….but I will join Missy in praying for your spontaneous healing. You’re a ROCK STAR in my book.
[Reply]
Tracey Reply:
April 6th, 2011 at 10:04 pm
I don’t know about a rock star… That might better describe The Man.
[Reply]
Cold room with my feet outside the blanket to cool off.
Sorry about the flares. They look painful.
[Reply]
Awww
That’s no fun at all.
I REALLY like warmth, but I don’t mind a cool room as long as I have plenty of blankets to curl up under.
[Reply]
Cold room for sure. And wow, you can really see the redness in your hands! Ouch.
[Reply]
Cold room, hands down..I sweat a l0t at night, seems to be meds related.. Hate it! Especially since when I take my temp while sweating, it’s still low!
[Reply]
Aww, Tracey. I’m late but sorry about your day. Hope you’re feeling better now. I’m praying, too, that healing comes your way. As for my sleep? I’d rather be warm than cool. I feel so different!
[Reply]
Tracey Reply:
April 10th, 2011 at 11:56 pm
Thanks Leslie.
[Reply]
Cool room. Cold almost. I’m so sorry you’re going through this. It’s awful.
[Reply]
Tracey Reply:
April 10th, 2011 at 11:56 pm
Aw, thanks Lu.
[Reply]
Just found out about you thru the EM Yahoo Group. Boy does your story sound familiar, thankfully I don’t have EM in my hands, just my feet. If you haven’t joined the EM group, you should they have lots of great suggestions for things they’ve tried for getting relief. I’m also your newest follower!
[Reply]
Tracey Reply:
May 4th, 2011 at 8:11 pm
Hi Melissa. So glad you found my blog! As much as having EM in the hands sucks, nothing compares to the feet. Ugh! I’m part of the Em Yahoo group, though I mostly lurk. There are some great suggestions there. I’ll try anything at this point so I’m making a list.
[Reply]
My 5 year old daughter was just diagnosed with Erythromelalgia. Thankfully she’s only had a few “really bad” flare ups and several “minor” ones so far. It’s nice to hear from an adult what it’s like since she’s still young and struggles to explain what she’s feeling. THANK YOU!
[Reply]
I have a fabulous fuzzy purple bathrobe that is ankle length. I also have fabulous pajama pants and shirt of similar fuzzy. My opinion of hot vs. cold is simple. You can always put on more clothes but eventually you are naked and have run out of them to take off.
[Reply]
Tracey Reply:
May 23rd, 2011 at 12:25 pm
I have the same theory! Easier to add layers and blankets than it is to live in the heat.
[Reply]
Leave a Comment