...but, boy oh boy, it was fun :-) Let us recapitulate yesterday's events, highlighting the insidious, pain-making moments. A 9AM trip to Shorter's groomer was quite involving. Not only did I have to assist the groomer at times, but when I should have been resting my tootsies, I was chasing after that adorable pug puppy you see in the photographs attached to the previous post. Ouch. I took a pain killer. Then, a trip with Shorty pants and my boyfriend (he drove) to visit his mother at work does not include readily available seating. In my stupidity and excitement, I took myself to a jewelry store to pick up a gorgeous, RSD fighting Australian opal ring! Perfection! I took another pain pill. Our next destination was Whole Foods where I stood and made a flowing plate of crunchy green chi, after which I decided a trip over to the building housing delicious smoothies was quite necessary. Another pain pill. Sounds like a normal day of fun, correct? Wrong.
I swallowed more pain medication than usual to make it to the end of funday, but I fell asleep with both legs burning and twitching. When the twitching enters in, I know I have fucked up good. It's draining, defeating, heart-wrenching, and crippling (in more ways than one), but I was mired by my youth. Pain is the cost, and I pay tremendously. I have been cushioned by this remission-searching bubble where my world is only as demanding as I make it. Come September, the real world is going to require a painful fight on my part for me to remain in it. Sometimes, it seems I am walking in quicksand.
Am I strong enough?
See, I still struggle somedays, too. With this disease, there is an abundance of question marks and little answers to go with.
5 comments:
Thanks for the comment. I totally understand what you mean by the twitching... I get that sometimes. Not entirely sure what it's from, but it is very uncomfortable, the worst its ever been was that first really hot heat wave and I got Heat Exhaustion. Right now I'm not doing much besides hanging onto my hobbies as much as possible and working to learn how to deal with EDS. We're young, and it is a fight.
HUGS!
I'm glad you commented on my blog - it lead me to yours.
It's ironic how pain twists everything so that engaging in normal activities becomes fucking up. I applaud you for doing real world things. I see that as staying anchored to life.
I can't remember how I found your blog (maybe from Kris Carr?). Anyway, just wanted to delurk to say that I'm really sorry to hear how tough things have been. I'll be checking in regularly. You're a great writer -- thanks for giving us a glimpse into your life.
This makes me think of spoon theory. I understand how you just want to go and go and taking those pain pills seems like it should make it okay to have fun just once and then yipee you pay for you're fun. With RSD there are too many punishments and consequences =p
You need to know about spoon therory if you don't already: visit www.butyoudontlooksick.com
there's a link in my blog...
Well i saw ur comment on my friend's blog (Tracy, Battling RSD and Still Going) and I just had to see yours. I'm glad I did and hope you'll check out mine if you get the chance...!
Well, wishing you pain free days from a fellow RSDer
<333
Not to sound totally flip, but I feel your pain! No, really.
Other than the activities, this sounds just like any one of dozens of days where I have tried to be "normal", to go out, have a nice day doing random, enjoyable activities that most people take for granted... just to get seriously BEAT by hard-core pain flares (a term I learned from you to describe what I had already experienced!) from CRPS/RSD.
And sometimes you overdo it; for me, it seems to be frighteningly easy to do (the overdo), but I am learning. Other times, CRPS has neither rhyme nor reason, and the smallest things flatten me.
I wanted to ask about the twitching; I have this, too, and wondered if other people suffer this. When this happens, I can't stand people to hold a hand even near my leg.
Thank you, though, for sharing this. It really highlights for me the challenge of learning to balance being IN life, with being gentle with oneself.
Knowing I'm not alone in this battle is one of the few comforts I know. eHugs to you.
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