Let me begin by saying that the title of this post has very little to do with the content of this post, but the name came to me last night before sleep and I thought ‘What an awesome title!’ What I will really use the name for, one day, is a benefit I will have in honor of sick people and underfunded, under-researched diseases that hopefully I will be capable of donating millions of dollars to. Then we’ll take those fancy photos that show up in the “Out and About” part of the newspaper with sparkly dresses and older men with younger women and really, really, white teeth. Maybe next year.
I am sitting in the office at my moms. Correction, laying. Sitting up is difficult at this point because I am in the middle of a full blown crash. Not sure if I overdid it in New York or what happened exactly but my body is angry at me. It’s like, giving me the silent treatment by not giving me strength to walk or shower and making all my muscles hurt; under my fingertips too. It’s a particular but non-specific pain when my body gets like this. Just a general “bone-aching” but I always know when it’s happening because underneath my fingertips hurt. Very weird. Anyway, I am lucky, because I am home and under the care of Doctor Mom and not having to worry about calling into work, fashioning an excuse that will translate to a boss who never took a sick day.
This morning I sludged from my room to the office, my wrists quivering at the weight of my computer and my eyes not quite in focus yet. I took my first set of pills and waited for the pain to ease and my brain to start functioning. Take pills and wait. If there were an instructional guide on How to be Mary Gelpi, those two steps would be peppered throughout. My mom is sharing with me the symbolism of boats and chocolate and pies because I told her about my dream last night, which involved the family and me getting in a boat accident, where no one died and the whole thing was surprisingly peaceful- and the night before where I dreamed that Nick, my mom and I were at a lake house and my mom and I were gathering golden apples to make pie and Nick was fishing, as usual. It was a nice departure from my typical high-anxiety dreams where either I’m dying or watching someone else, like Monty, die. These last few were calm, so she is helping me process them. One of the perks of living at home: Coffee ready when I wake up, and a personalized dream-interpreter on staff. Score.
I’ve had a to-do list for days now that I can’t wait to get started on, yet I’m just unable to begin. Yesterday I spent the entire day in bed. Every few hours I’d wake up drenched in sweat, in pain, re-dose the meds, and go back to sleep. It’s a funny way to spend your day like that. Because by the time I “woke up” it was dark outside and Monty came in from a day spent frolicking in our yard and playing soccer by himself. Poor thing. I owe him a few games when I perk up. But I barely saw the sun, which is depressing. But that’s how crash days go, and I remind myself that it won’t last. In a few days, after successfully doing nothing, I’ll start to feel better. The nice part is, the sun will be waiting for me when I’m ready. Monty and the sun– they hold nothing against me. For that I am lucky!
I think the biggest teacher of this illness has been learning how to exist in the “chaos.” I’m often eager to jump into things…even boring things, like laundry. But I’ve had to learn how to let my toenail polish stayed chipped until I have energy to fix it. Let my laundry pile up until I have energy to do it. Let my phone ring without me answering it until I have energy to talk. There is something uncomfortable about letting things “go” that you want to tackle head on. For instance right now, I’d love to unpack my suitcase and do laundry. I’d also love to call my sister and catch up, write a few thank you notes and send them, clean my car, and oh yeah, SHOWER, but all of that will have to wait. And truthfully, many of the things we think can’t wait, can. No-one ever died from going one more day without showering. Well not that I know of. It’s a lesson I continually learn and relearn, but it’s valuable to see that, while I’d love to dive into these things, I cannot. They will simply have to wait. And I need to learn how to maintain in the grey of things–life between the trapeze swings. Just as the sun will be waiting for me, so will everything on the to-do list. Anyway, the computer needs to re-charge and so do I. I’m tired and weak and am going back to the underworld. I’ll see you when I re-emerge.
Health, Happiness, and Undone To-Do Lists
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FibroM.E.-Awesome 
You couldn’t have stated this more perfect. It’s sad and also comforting to know others feel the same.
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What is the deal with runners these days? Every time I meet someone cool I find out that they ‘run’, like ‘road races’, and ‘time themselves’ and then post it on their Twitter account. Look at my live feed report of me running!
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It’s amazing how long we can live with these illnesses, how many crash days we can go through before we finally learn to let go…cheers the peace that comes with finally learning to let go, to the triumph when we get to pick it all back up, and cheers to your mom…those that we live with…our unsung heroes that bear witness to each battle. As always…thanks for the posts :)
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I am so blown away by your blog — you are quite an amazing woman who is wise beyond her years and your end comment about returning to the underworld was perfect. The underworld has been flitting everywhere across my heartdar lately and I am there resting. My teacher shared a lovely story:Clarissa Pinkola Estes offers some words from a pod cast that have stayed with me.here is the stunning moment `she told of a time she interned in a psych ward where a particular woman often wandered the hall,
‘sometimes she would take my arm and look right into my eyes…her eyes were very clear, a startling crystal blue….and she would say ” rest my dear, you may rest ~ God is Awake”. So rest away lovely Mary, the Divine is always burning its spark in your heart. Thank you for your words and spirit of love that permeates all.
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Guess what? I’m feeling better. :) Thank you all for your words, and to all you sickleys: Hang in there. We’ll get there.
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I hope you feel better.
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I know exactly how those days feel. Except for me it is migraines and depression. I have had months like that, actually. I remember what an accomplishment it can be just to take a shower. And actually doing laundry felt like the most amazing, productive, mature thing anyone had ever done. Thanks for sharing your story, Mary.
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Like I said, Mary doesn’t write, she weaves magic with words and feelings. Such awesome expression, such strength of emotions, such flow of creativity. Soon there will be freshly pressed featuring this other Gelpi and others. Gosh she is a fairy.
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I just want to tell you how incredibly brave I think you are, Mary, for sharing your life and your daily struggles with people through your blog. Sure, everyone seems to have a blog these days, to write about all sorts of things, but you are one of those bloggers that is able to give a real, down-to-earth, honest voice to the words on the screen and that is a rare talent. I love reading your writing, and I am sending a whole lot of positive thoughts and prayers your way for health and healing.
Keep it up girl! And keep writing! :-)
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Been having a couple of these days too. Too much pain and too tired and too many pain meds to do anything that I feel NEEDS to be done. I’m not good at letting it go yet, but my body is quite angry with me right now. Maybe I’ll concede defeat.
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Your writing describes exactly what I feel. I keep thinking I can do the simple stuff like cleaning my breezeway so that I am not so embarrassed at the entrance to my home….put me down for 3 days and still some but I have to go to my part-time job and pretend that all is well when what I want to do is be home curled up not moving and waiting for the pills to ease the pain. I have to do my laundry because I need the clean clothes and it’s been a month since I did the wash and cleaned the house. My family tries to understand but I don’t think they really get it. I miss my independence and being the fun Joyce without pain and being bedridden for days after. I believe I can do it but soon as I try my body says NO you really can’t…..and then the depression kicks in. As you may have guessed I too am in a crash and the to do list must wait.
Thank you for your beautiful writing and being able to really describe what it’s like to live with this misunderstood illness. In a sad way I feel a little better knowing I’m not a weirdo and the only one struggling just to get through the day.
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I’ve had some “bone-aching” days, as well. Especially recently. That’s a good way to put it. Your writing is awesome! I also do the “take pills and wait” thing. Every morning. I feel like the tin man looking for his oil can.
Hope you get over your crash quickly.
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Mary, you’re an awesome writer! What a great post. And our dogs love us no matter what- they are such special creatures! I hope you get to feeling better soon- but for now, just write yourself some rain checks on those list items. Until you run out of clean underwear :)
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Great post–it’s one of the mottoes that I live by: it’s not that I’m a slow learner, it’s that I’m a quick forgetter!
It’s awesome that you appreciate your family the way you do, and that you don’t have to brave your underworld alone, to borrow a phrase from Poe (remember her?).
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