I really, really need to bathe. Let’s start there.
Why don’t you take a bath Mary? Great question. I’m running on fumes, that’s why. I’m not just low on energy but also have that Bone Crushing Weakness going on, and it turns out the whole “cleaning-up” process requires much more exertion than you’d think. And you wouldn’t think about, because it’s not something you think about when you’re well. When you have a steady supply of energy on tap. A shower is just a precursor task on your way to doing other things. When you’re chronically ill, showering becomes the thing.There is no after. No next. To Do List: Bathe. End of to do list.
Not until I was at the mercy of illness did I understand the physical toll of hygiene and general appearance. This is mostly the reason that when I’m not out in public, I look like a deranged, color-blind Craigslist Killer. Just to give you an idea, besides my obvious and immediate desperation for a bath, I am currently wearing these green-striped pajama bottoms with mis-matched socks and a Hanes His Way V-Neck white t-shirt. This is actually one of my more cohesive looks, except that I ate a pomegranate last night and the dark crimson juice has splattered all across my chest. Did that motivate me to change my shirt? No. So now not only am I dangerously close to exceeding the point of no return in terms of lost humanity due to lack of cleanliness, but I also look like I’ve been bleeding, or that I made someone else bleed, which adds a concerning urgency to whatever it is I have going on right now, but I still can’t be bothered enough to do anything about it. So I just go on living my life and all this has really upped my game in terms of just how insane I can look on a Wednesday without really trying at all. Some would call that impressive! Anyway, I’d love nothing more than to do my laundry and my hair and alphabetize my life and put on a dress just for fun, but I can’t. Not at the moment. And it still surprises me how seemingly simple and small things start to become large and exhaustive, all on account of health. Not until you’re straining to stand at the sink and overwhelmed by the exhaustion you feel just having to move your tooth-brush up and down, or discover that your arms and hands have turned to rubber after using them to lather up the shampoo in your hair, does it hit you just how costly all these little moves are. Not until the smallness of previous, everyday tasks suddenly reveal their enormity do you fully appreciate how much exertion it takes just tending to this business of being alive– and this is before you even go anywhere or do anything! It’s silly really. Still, this does not change the fact that I really need a bath and if I go one more day without one I fear I’ll reach an irreversible state of unclean and I’ll never get it back. I’m also sort of hoping that by sharing this very inappropriate and vulnerable reality with perfect strangers and a few friends on the internet, that perhaps it will motivate me, give me that final ‘push’ to take the plunge, even though my whole body feels like the human equivalent of mashed potatoes. Mashed potatoes with death gravy!
I open with this unremarkable and embarrassing truth about my life because I think I’ve become a little too serious about the outcome of my writing in the last year or two and I’m trying to remember the importance of light-heartedness. And humor. I’ve noticed I put an extreme amount of pressure on myself to produce posts that are equivalent to biblical scripture, instead of remembering that this is a blog, a documentation of a small silly life, and it doesn’t always have to read one way or another. I find that way too often the writing doesn’t meet my expectation–which isn’t even anything specific, it’s simply a personal note of “It could be better.” As a result, I scrap a lot of work, I start over, or I just abandon it halfway thru. This is not a smart or productive way to go about any art, so I’m going to try to stop doing that and also remember to have fun. Oh yeah, fun! I forgot about fun! Usually the things I really enjoy writing are the things that people enjoy reading the most. It always translates. Too often it feels like extremely tedious work, which I think it has to be sometimes, especially if you want to always be improving the quality of your work, but more often it should just feel good. There should be some amount of recreation in it–this is my passion after all. I do it because I like it and it makes me better. Too often the process feels like taxes. So, I’m trying to remember to enjoy the process and the outcome, and also that not every word I write has to be a thought-provoking useable quote to put by my name after I die. “I need to bathe.” -M Gelpi, 1984-2016.
It’s been kind of a stupid few days. For one thing, I’ve bit my top lip no less than four times while eating. It frustrates me that my mouth is this stupid and that it doesn’t learn the lesson faster. Is it really so hard to GET OUT OF THE WAY. I think, I am 31 now, I shouldn’t have to explain to my gums that hey, when there’s food in my mouth and my teeth are moving up and down? Do you think maybe you could stay out of the way? Not a big deal or anything I just don’t want to EAT CHUNKS OF YOU and also I don’t like the taste of blood. With anything. So maybe stay clear of my teeth now? Great thank you. Glad we had that totally necessary talk. Now maybe I’ll tell my head to stay out of the way of my fist when I’m punching stuff! Hah, who am I kidding, I’m too weak to punch things!
What else? Oh yeah, I’m starving. I never mentioned this before but I’ve been battling an addiction for a few years now: it’s sugar. It’s very real!! So I basically eliminated all processed sugar as of Sunday, and it’s getting easier I guess. But even it being easier doesn’t change that it’s still ridiculously hard. And half the time I think the answer is, don’t diet. If you’re addicted to sugar, just stay addicted. Get fat. Get diabetes. Die young. This isn’t worth it. A cupcake would make me so happy right now, why am I denying myself this easy promise of happiness? Why am I making life this much harder on myself? Kiddingggg. But truly, I was addicted. Am? I think I still am, I’m just not feeding the beast. It began shortly after I began the corticosteroids–my appetite, my cravings for sugar, and my intolerance for it all simultaneously exploded at the same time and only got worse with time. I also became extremely hypoglycemic and would wake up in the middle of the night starving and shaking. I knew at some point I would have to do something drastic, not just because I was clearly addicted to something I didn’t even used to like, but my body was also rejecting the very thing my brain was craving. So many of my migraines occur after eating something sweet, typically processed sugar. Not to mention, there is just way too much junk in my trunk now. And also under the hood, and the front and back seats. Mostly, I just feel totally out of balance. I don’t like my relationship with food anymore. I used to just eat when I was hungry and then not really think about it. This whole sweet tooth thing is exhausting and also never-ending. I literally never feel full and I’m bored thinking about it all the time. So it was time to quit. Right now I’m just trying to get used to feeling mild hunger or major cravings but not immediately shoving food in my mouth as a response. Especially when I’ve already eaten a healthy meal and I know I’m not actually hungry. It sort of struck me, this totally 1st world moment of enlightenment: Oh yeah, I don’t actually HAVE to eat just because I feel hungry. I literally forgot that I have that option: NOT eating. Only an American would forget this, I’m convinced. So that’s going well. Wait no actually it’s really hard and taking a major adjustment but whatever, it’s in the name of being healthier and I can get behind that.
This morning, I was lying in bed and trying to find the motivation to get out of it, my eyes scanning the room looking for something inspiring to land on. Window. Wall. Dresser. Monty! Then I thought hey, I’ll just lay here and talk to Monty. Sometimes I share my ideas out loud with Monty because NOT EVERYBODY HAS A BOO WHO WANTS TO HEAR THEIR COOL TAKES ON LIFE. And I was like Monty, don’t you think it’s kinda dumb how hard life is? I mean if we were talking about Life Round 2, like if this one were a dress rehearsal, I would pull for “Less hard stuff, more funny stuff” in the next one. I just think the script is calling for more humor, more casual fun. It’s like the architect of the universe was listening to a playlist and when he got to this part, Coldplay got stuck on repeat and so there was a somberness infused into the day-to-day to stuff. He needs to listen to Pharell, or better yet, the band Fun! They would mix it up in a positive way, I think. And I’m sharing this with Monty thinking this is pretty good stuff, and what does Monty do? But abruptly start licking his butthole. As if the house was going to collapse on top of us both if he didn’t do it at that exact moment. Right in the middle of my Ted Talk (more like BED TALK) about how life should be tweaked for the next go around. At first I was like OH REAL NICE MONTY but then I was like God, who am I to make you feel bad about this? It’s probably the shitty food I give you making your butt itch, even though it’s expensive as shit. This country has major food problems, for dogs and people! Whatever I mean that’s what they say.. I don’t really know anything about it.
I’ve been writing this dedication piece on gratitude because despite my life looking and sounding like a disaster, it’s actually great in a lot of ways and has some really amazing parts and people that I am crazy grateful for. I’ve been writing it for weeks, in my normal tortured way, and there’s some good stuff there, but I think I just need to calm down. The piece is not just about saying thank you to the many, many people who have reached out and offered help to me in so many different ways this year, even though they are who inspired the piece. It’s more about the new and intimate way I’ve come to understand and appreciate gratitude in my life, which began with me recognizing gratitude during parts of my life that I wouldn’t traditionally say thank you for. There were extremely tough moments, days, and months this year. And yet somehow, there would be these redemptive moments within the pain, where I felt grateful for the exact experience, even if it wasn’t enjoyable or was causing me pain. This was never traditionally my approach to gratitude. I said thank you when I recognized that something was good, and there were always plenty of good things. But there was a whole new light shed this year, particularly during this winter which has been challenging in a number of ways, and yet the struggles still managed to produce these amazing moments of love, kindness, help, laughter, friendship..all in the midst of what I’d normally consider “disaster.” I write about it because I am continually surprised and amazed when I feel gratitude sneak up on me inside–I’ve been blown away by its reliability regardless of whatever scenario I find myself in. It was always easy to say thank you when everything went my way. But it’s been a new and enlightening experience stumbling upon it even when I’m lost or isolated or feeling totally discouraged. That’s changed how I look at everything now, and it really lightens the burden of whatever I’m carrying when I remember to try and find it. Anyway, that’s what the piece is about. Hopefully my brain will stop screwing around and I’ll get it cranked out sooner than later.
In the meantime I want to say that while I don’t always feel worthy of the love, help, gifts, messages and prayers that are offered to me by so many people, I do constantly feel incredibly grateful for the support that me and those who care for me have been given. Every way I’ve been helped or encouraged, no matter how small it may have seemed, always presses me to be better and to try harder. All we can do is our best, but being loved and supported the way I have continues to raise the bar for what my best can be. Thank you! All of you. My life is a perfect example of how needing help can be a really beautiful thing and not something to be afraid of — it teaches me to trust in humanity and to humbly surrender and accept what I can’t control, and I think to the giver, it teaches grace and encourages kindness. Somewhere in the middle is gratitude for us both.
I think I feel encouraged and insecure enough now that I’m going to attempt to bathe. Thank you for helping me.
Health, Happiness, Hygiene
21 thoughts on “Getting Clean”
Mary, Thank you so much for writing about the difficulty of bathing. I’ve had CFS/ME for over 15 years and in the last three years bathing has become particularly difficult for me: I’m showering and washing my hair once in every 2 to 3 weeks. It’s come down to choices like: I can microwave and eat a cup of soup today, OR I can take a shower, OR I can go get dressed, walk out the door to get my mail and go right back to bed, OR I can pay a bill online, OR…well, you get the drift, and I know you understand…I can do one of those things a day, but not two. Thank you for your blog, it’s nice to know you’re out there.
I love your blog. Thank you for sharing.
I wanted to share a book with you called, Medical Medium by Anthony William. Reading this book has given me a glimmer of hope in my own journey with cfs so I wanted to share it in case it has some helpful information for you.
Your perspective and insight has been immensely helpful and meaningful to me. So thank you.
Sending you healthy thoughts and energy:)
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Thank you so much.. I’ve heard of that book from a few different people and so will check it out. It can’t hurt. Thanks for the positive thoughts and encouragement.: means a lot to me :)
Oh, Mary, there are myriad numbers of us out here nodding our heads. I put a plastic chair in my shower, which helps, but then there is the pain of the impact of the water and the shock of the temperature differential (even with waiting for it to be hot enough, it’s hard to be precise). If I had a bath tub, it would just be a different set of logistics, so what? Now there’s cancer added into my fibro landscape, but it’s really just an added layer of pain, no biggie, right? But having to go out for the doctor visits and tests and PET and CAT scans, pre-op stuff and surgeries and check-ups and now chemo and later radiation (I’m pooped out just thinking about it and on it goes…) I am so glad I don’t have to feel so alone with the dang shower problem!! You really are a treasure–thanks, gentle fibro-hugs and a loving pat for Monty, too.
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I absolutely and positively cannot imagine having to go through cancer treatments on top of having Fibro. It would be horrible enough if everyone and everything needed came to you but having to go out and look somewhat human, Lord knows how many times a week, would be impossible for me. I’m afraid I would just say the heck with it and look forward to the end of my life (but I believe in Heaven so I have no regrets about leaving this world).
You are so brave and I admire that. I hope that the treatments work and you will be cancer free and miracles-of-miracles that your treatments would mysteriously cure your Fibro!
May God bless you and heal you….
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I can’t either imagine cancer on top of the pain of this illness.. But you sound like quite the warrior. Hang in there and please let us know how you’re doing. Screw baths. Just take it a day at a time, and if you manage a smile through all that, then you’re winning. The silver lining? They have found that some cancer treatments have been effective at healing CFS/fibro symptoms.. So hang on to that! Will have y’all in my prayers..thank you for reading and sharing.. You know where to find me if you’d like to talk more :)
Hang in there lady.. We’re all rooting for you. And please come back and let me know how you are doing. I’m really happy you found the blog and if its offered you any comfort at all. Gods greatest soldiers get the biggest battles.. So you must be a tough cookie :) stay strong and remember you’re absolutely not alone.. Come back and fill us in on how it’s going. I’ll be keeping you in my prayers. All the best, Mary
Hello Fibro Peer I get you. It takes me hours to create my perfect, researched and advocating blog pieces! Bathing. LOL. With pain I can wait 5 days and just drag a washcloth across my body, splash water on face and hair and brush teeth. I pull on my easiest to reach clothes that essentially match and hope that tomorrow will be better. X livingyournewlifewithchronicpain.com
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Very familiar with that routine :) hang in there!! We will get there together..
The struggle is real. I don’t mean that in any sarcastic or judging way at all. I am serious. I know your pain because I share your pain. Life is a struggle and you are by no means alone.
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Thank you.. Funny how powerful such a small group of words can be. It’s easy to forget, thank you for the reminder :)
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Just do what you have to do. You’re ill, just keeping it together is all you need to do. Sending hugs too.
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YOU ARE MY HERO!!! I can’t express how much I relate and live your writing! Please keep it up, it gives me validation along with humor – thank you!!!
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Baths are a partial solution. Put in a little soap instead of bubble bath and just soak in it. Good for your tired muscles. Dunk your head once or twice and let that suffice. Baby powder in your hair can also make you at least FEEL a little less oily and dirty. If you’re opposed to an actual bath, seriously consider getting a shower chair so you can at least sit while you shower. Standing can zap your strength so much, so if you sit, it gives you that little bit more to accomplish washing your hair. Hugs.
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Hi, new reader here…thank you so much for your honest post. I’m sitting here in a nightgown that is considerably less than fresh, with an itchy scalp because it’s been days since I had a shower, in a bed that looks like a hamster’s nest, in a room that…well, you get the idea.
Seriously, I struggle with a lot of shame with this one issue. So it was a nice bit of serendipity to find your post. I’m up with insomnia wondering what the heck to do with myself at 1 in the morning. Thank goodness for my Kindle! It’s a link to the world that’s still out there!
Anyway, I feel a lessening of shame and much less alone after reading this. I sometimes forget that there’s a sisterhood of us, that I’m not terminally unique. Hugs for northern Cali in the wee hours :-)
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I work overnights in a boy’s home. Been so sick and in so much pain (with migraines sleep dep and back/shoulder pain) that I haven’t bathed since Monday. I need to. I’m sure I smell. But my head is pounding and my one-piece purple footy pajamas are so cozy. And I’d have to move the dog, which would both upset him and use precious spoons. I keep crying sporadically, not even sure why, so my skin is blotchy and my eyes look like i’m a junkie, probably snot on me somewhere. Today I ate a dark chocolate bar from my work bag and three tortillas from a bag I keep on my nightstand next to a bottle of hot sauce. Clearly I won’t be winning any medals for ‘adulting’ today. Not even sure I get a ‘thanks for participating in the human race’ ribbon. My point here? You’re not alone. Your writing is awesome. Thank you for sharing a sliver of your journey with us.
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I too know what a challenge it is to just shower and get myself ready in the morning. Fibromyalgia kicks our muscles’ butts, if they had them. I too know what it’s like to have those sugar cravings. I never used to like chocolate that much. I’m now on an older tricyclic antidepressant meant to prevent migraine and its major side effect is: increased desire for sweets. Yep. Every time my doctor has tried to up the dose, I feel that side effect the worst and feel like a fly or an ant at a picnic or something.
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I know the struggle of getting a bath/shower. I am dealing with that issue myself right now. I have been so caught up with getting my house organized the past couple of days (it’s really a mess that I can’t seem to get cleaned) that I have been overwhelmed with trying to take a shower as well. I need to get myself on a good schedule in the next week because I’m starting college in 12 days. Wow that isn’t much time to get things scheduled in. I also have to figure out how I’m still going to be able to work my little part time job and get through this flare that I’m having. I am so overwhelmed by the disorganization that my house is in that I can’t think of anything else.
I worked tonight and came home and just plopped in my chair and started reading this post. So much of what you have said here tonight is resonating with me. I have worn the same set of sweats for a week. Yes I change my underwear, if I remember to put some on and I change my tank top, well I’ve actually changed it once this week and I have a sort of bra on. The only thing that has gotten changed regularly is my socks because I can’t sleep with them on and I take them off at night and throw them in the laundry basket. The cats are mad at me and I’m not to happy with myself either. I want so desperately to be able to get myself in the shower but now I’m finding I need help just to get my legs over the edge of the tub. Then it takes me 2 hours to get up the energy to get dressed so I sit in my chair wrapped in a towel. Thank goodness my son doesn’t come out of his room while I’m sitting here.
Enough said, Mary I know the struggles you are going through and hope that you can get a bath. Heck I hope I have the energy to take a shower in the morning so I feel clean again. Good luck!
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Good luck with the bathing! People really don’t realise how much of a challenge such simple tasks can be. I am really happy these days to be well enough to actually stand in the shower every other day :) For far too long I couldn’t shower unless I was sitting on the floor (no bath) and would wash my hair on days I didn’t have to do much else.
Brushing my hair can still be unnecessarily difficult, your heart rate shouldn’t double with the effort of putting your hair up! And I now have to keep it much shorter than I used to.
But still, I know I have so much to be grateful for. I may not be healthy, but at least my health is stable for now and I am able to do a lot of the things I enjoy as well as work a couple of days a week! (so many people who complain about work really don’t understand the alternative!)
I have also started writing again, and you are right, it can feel like a chore somedays but it is also very satisfying to be able to put some of the stories in my head onto paper coherently!
I hope your crash ends soon and you start to feel more human again!
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Yes, YEs, YES, I AM NOT ALONE! Mary, this blog resonated to my core. I have been chronically ill for 10 years now, with chronic pain, fatigue, chronic everything that they can’t find any answers for. So I just say I am chronically chronic with it all. F— a diagnosis.
I am mostly bedridden now, with the most patient loving husband and dog. And they are not without their own issues. My husband is a kidney transplant pt. and our most beloved 7 year old golden Cooper has just been diagnosed with a cancerous mast cell tumor on the pad of his foot. Prognosis good, once they remove his front left leg. No problem, just cut it off. Am I just sensitive, or was their answer not just a little harsh?So we are all baskets cases here, although our Cooper seems to be the cleanest. He gets groomed once a month.
Back to cleanliness, the dreaded truth of it all. Showers just kept getting further and further apart. I just cannot even bring myself to admit how long I may go between showers sometimes, without sounding like a deranged woman who has no better sense. Also hair cuts, color, you know, the caring about it. You were right on with the “no to do list”. It’s just bathe and done. And I mean really done. No blow dry, no curl, heck it’s a good day if I can brush it out at some point afterwords that same day.
I have embarrassingly now turned to hospital bathing wipes just to keep some general appearance of being clean and fresh..Ha! For the most part they work pretty well at laying in bed and quickly wiping off the skins cells not yet sloughed.
And clothes. Good God, I don’t need them. Where do I go? I can barely get to my doctor appts any longer due to exhaustion. I put on the cleanest things I have handy which may or may not include my husbands clothes. My most comfy thing is a shirt from college that now has holes under the arms, and the hem torn up, with a pair of the biggest most beat up sweats I can find. For some reason, the worse it all looks, the more comfort it provides.
Your blogs Mary are honest, and help me feel understood by a complete stranger across the states. Keep on..your bad days help many others having the same type of day feel more understood. I mean, unless you walk in our exhaustion, you can not possibly understand the struggles we deal with daily. And you help me put a bit of a smile back on my face when I read your posts.
Today we can all rest if we need to, and think about it again tomorrow.
Oh yeah, glad to know others have this sugar addiction. I think it’s because our body is trying to find the quickest way to get an energy boost or something. I am truly in the depths of cookies and m&ms right now.
That shower will come, when your body is good and ready.
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