Things That Should Not Be Hard


I prefer to always be busy, and I like that busy-ness to involve meaningful activities. EDS complicates this for me, because it seems like all of a sudden I’ve gone from being a high powered sports car to a moped. Putt-putt-putt-stall. I see chronically ill people online talking about how much their lives have slowed down and I vow, as if I were made of different stuff, that this will never be me. I will always be busy! I will always be productive! There is a voice in my head that has been with me my entire life, and it is always whispering, “You are running out of time. Running out, gonna die, wasting your precious allotment, running out of time.”

Since finding out I had EDS and also the common “sudden decline” that seems to come with it, I’ve struggled with what to do about being in pain or being tired or being anxious or being nauseated a lot more than seems necessary. I’ve tried the following:

1. DO IT ANYWAY BITCH. Do it. Shut up. Do more. Do it harder. Push, push, push. It seems like it should be crystal clear that this is a bad idea, but you know? It’s hard to see that when you want to get something done. I trade physical comfort and possibly less pain for the mental satisfaction of being able to quiet that voice for a bit because there: I did X, and then I did Y, and yeah, I tiled my swimming pool in credit cards in a mosaic of  The Birth of Venus just like Martha Stuart did in that American Express commercial.

Under that category today I painted an accent archway/window that goes between the kitchen and the living room. In case you are thinking that was some big job, here it is:



The paprika part, that’s what I painted. I masked it, painted it twice and hung those flying fish. It was made complicated by a sink on one side and a couch on the other, so I had to lean way in from a step stool on one side and balance on the back of the couch on the other side and then stand on a tiny lip of counter top to hang the fish.

This is a stupidly simple little project, but I will be lying in bed in pain tonight, I am sure. I have some joints that are already wanting to dialogue with me about this little endeavor, but I told them I’m going to give them a martini tonight, so they can zip it.

2. DELEGATE. I am constantly asking my child to open doors for me, students to get things down or put them up for me, my husband to lift this or move that or, yes, carry that pot of boiling water to the sink, I cannot lift it myself. This preserves and protects the physical aspect, but makes me feel frustrated and ashamed. Other people have other things to do, and I hate the idea of myself pleading, “Could you help with this? And this? How about that? What about this?” It makes me weaker than I believe myself to be, and always waiting for someone to say, “No, I can’t help you.” Then what? Sure, you’re drunk at a party and you say you’d be my official door opener and lifter and carrier, but not when your life needs your attention and, dude, ALL THE TIME I need someone to help me with stuff. Some of it is not important like boiling water, it’s stuff I want to do like paint and hang up some flying fish. I do not want to depend on someone else to hang the fucking flying fish. 

3. TAKE BREAKS. Sweet Jesus on a Raft, nothing can get done with a billion breaks. Plus, I berate myself for the quality of my breaks (yes, I do, it’s weird and I’m seeing someone, plus you are weird, too). Did my break consist of playing all five of the match three games on my iPad until I ran out of lives on each of them? WELL, that’s going to look like a real accomplishment on the obituary page, innit? Can they add that I also drank a whole glass of water while playing so that it seems like maybe it was worthwhile (hydrate or die, amirite)? Because at 44, frequent breaks to drink WATER are what everyone does. I *should* be doing something meaningful, like reading a book or catching up on the last four issues of Bitch magazine, but no; I’m desperately trying to match 60 carrots in 12 turns. Or I’m surfing the gay sex ads on Craigslist. Put that on my tombstone, son. “She lived well, and enjoyed an endless fascination with the tendency of gay men to take dick pics while wearing socks.” 

4. ADMIT DEFEAT. Yes, get in the tub when you get home from work even though you don’t want to. Hell, go take a hot bath in the middle of the day if you must. It is going to be over 100 degrees every day this week, doesn’t a hot bath sound divine? DIVINE if you are interested in what it feels like to be seafood. Stop and go put your hands in the hot wax, pretend you’re at the spa. Except that in order to do that someone has to help me and the 12 year old has a crummy sense of humor and might promise to set me up with some Firefly and leave me stuck with Duck Dynasty instead. Or delay putting the plastic bag over my waxy mitt because he’s got me trapped and I’m already embarrassed and then there is shouting. Isn’t there a commandment about not teasing your crippled mother? No? That’s why I’m not religious. That right there. 

5. FIND A NEW MIRACLE THING. Oh, aloe vera juice, I look to you, with your promises and lies and horrid taste and, well, cleansing effect. How many bottles of this or that supplement or herbal thing or tincture with someone’s handwriting all crammed up to tell you about it on its label have I been through? Someone asked me today, “Are you using Arnica?” No. I am not using Arnica because I am not a hippie and it doesn’t work, because nothing rubbed on the skin is going to penetrate the joint like some magic shooting star of helpful patchouli. If essential oils fixed genetic disorders I can assure you that the world would be a very, very different place, kids. You know what essential oils do? They make some dude at the top of the pyramid scheme rich and the rest of you smell like mildew. Someone had to tell you. 

Even this, blogging, hurts my shoulder/back right where Maleficent’s wings were, my thumbs, and my neck. Ditto for computer games. I cannot play XBox because it kills my fingers and thumbs. TV sucks out my brain and I just can’t stand that feeling, all slippery and oozy and forgetful. Sometimes holding my Nook to read in the bath hurts my hands and I just am not the sort to find sitting in a tub of hot water entertaining all by itself. I can’t sit comfortably in most comfortable chairs for very long because my lower back seems like it collapses. My neck no longer likes the career it established in holding up my head. I just can’t trade “being alive and creative” for “lying in bed.”

The Shrink asked me yesterday how we would help me cope and I had NO IDEA what to say. I don’t know; all my coping things are hard on either my body or my brain. I think I just have to keep on keepin’ on and live with it, but try to avoid lying down in case I forget how to get up.

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