One of the things I never realized about chronic illness is that it is easier to drive than it is to take a shower. If you see someone driving their car to an appointment, you might think they’re doing okay, but that person may have needed help to wash their hair that morning. And, by “morning”, I mean afternoon because it probably took a number of hours to get from waking to bathing.
I can drive myself to nearby appointments and I can talk for the whole time I’m there – half an hour sitting up with a doctor, an hour lying down with the physical therapist – but, if someone witnessed this, would they understand that I couldn’t write a blog post that day, I had to put on clothes in increments over the course of an hour, I had to rest in a dark, silent room immediately before and after the appointment, and, if I had slept poorly, I would have canceled?
My husband has been washing my hair lately. I sit on my seat and he leans awkwardly into the shower while I rest my forearms on my knees and hang my head. He also helps me dry my hair. I sit on the toilet in much the same position as I did in the shower and he stands above me with the hair dryer.
My sister comes over to help me with laundry. It’s been a long time since I’ve expended the energy needed to fold or hang clothes, so there are wrinkled piles of clean, dirty and not-clean-but-not-dirty-enough-to-be-washed items in various rooms. I never thought my husband would be scrubbing my scalp while I sit naked and motionless or my sister would be sorting my underwear while I am supine, watching.
It seems like a new low, especially in light of the fact that I’ve been housebound for a year, I’m walking under 1000 steps a day and it takes about 15 minutes of activity to wear me out. But I don’t think it is a low. I feel hopeful; overall I may feel healthier than a year ago. I’m more debilitated now, but less ILL. More chronic, less flailing, flaring, uncontrollable. A year ago, I was freezing all the time during the day and drenched in night sweats whenever I slept. I was in constant pain and felt fluish every day. I was still going to the dog park and grocery shopping, but I was scared and overwhelmed. Maybe most of the improvements have been mental– now, when the viral symptoms descend, I don’t panic. I understand that this could be lifelong and any progress will always be at a snail’s pace. I understand there may not be progress at all, it may only get worse. I know now there will be spans of no pain and I just need to take one day at a time. In fact, every single night when I go to bed, I am excited at the prospect of another chance in the morning– at the knowledge that a new day may bring a better day.
My husband says, it was a long road down, so it’ll probably be at least as long back up. I try to relax into the ride, do all I can to unburden my organs and facilitate healing. When my inner workaholic and constant student starts to writhe inside this straight jacket, I soothe her: You are working. You are writing, reading, learning about yourself and opening your eyes to suffering. I remind myself that I don’t have to talk to people that annoy me, drive during rush hour, meet deadlines or bow to bosses. When my night owl howls, I tell it nothing fun happens between 9pm and 2am. You’re not missing anything, go to sleep. I try to believe it. I remind myself that I never have to hear an alarm clock. I ease into bed with a solid routine and, when I wake, I lounge for hours. This is healthy, don’t resent it. When cabin fever and loneliness threaten to make my mind come apart at the seams, I pretend I am monastic. I am on a retreat. I am cleansing, enjoying solace. This is a temporary stillness. It is needed. Revel in it. I get to enjoy the garden and the sun. I get to spend every day with my dogs, even if it is lying flat on my back. I promise myself: The world will be there when your body is able to meet it again.
Maybe this low is where the slide stops and it’s all uphill from here. Listen carefully: “Believe in miracle and cures and healing wells.”
So hope for a great sea-change
On the far side of revenge.
Believe that further shore
Is reachable from here.
Believe in miracle
And cures and healing wells.
Call miracle self-healing:
The utter, self-revealing
Double-take of feeling.
If there’s fire on the mountain
Or lightning and storm
And a god speaks from the sky
That means someone is hearing
The outcry and the birth-cry
Of new life at its term.
Seamus Heaney,
The Cure at Troy
R.I.P.
Rag and Bone Shop of the Heart 
Wow! I really related to this post, especially the part about at times, not seeming healthier. We define ourselves so much by what we do that when people see us not “doing” they equate it to more sick and when they see us “doing” they equate it to less sick. Until I was chronically ill, I did this too! I think I even believed it at the beginning of my illness; if I could just do things, it’d mean I’m not as sick as I feel.
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Exactly! Anyone seeing me from the outside would say I am so much worse, but nothing compares to the endless shaking, sickly, evil night sweats and the bone-chills. Even when I was working and running around the dog park, I was worse than I am now, practically unable to walk. If I can keep a handle on the emotions, I can do this. I hope. 🙂
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Firstly, welcome back, I’ve missed you and every day have hoped to see a post from you but as is said… patience. It’s so true about us equating “getting things done” with being healthier, another gripe I have and find myself cursing is how well I look, for I don’t look sick, I may look disheveled at times when brushing my hair is a no no or dressing is too draining but I rarely look sick and most people start greetings with “you look great”, my gosh, how I have wanted to smack people at times! But you are so right about using the down time, accepting the limitations and somehow turning them around to benefit you, even if it’s viewing something in the garden, having the time to know the birds fluttering by. Nature is healing, if not physically she can calm our frenzied minds. I was about to say I’m so sorry to hear of all the help you require on a daily basis, but i refuse to say that word, instead I am glad to hear you have the help and support you need, and good people around you who love and understand your illness. Just like in Seamus Heaneys poem above, they are hearing. xx
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Aw! Thank you for the welcome back! That feels so good to be missed. 🙂
Funny you should mention looking well: I have a post in the making called “Visible Illness”. I actually look sick. So many of us don’t and I wonder why I get to look like hell. It scares me. I know it is frustrating looking healthy when you are anything but… but, the flip side is, every day I look at myself and think, “How can you look so ill when you rest constantly, meditate, sleep and have no stress?” My eyes used to be white and now they are yellow-grey. And my pallor!
Anyway, thank you so much for the message. Seamus Heaney’s passing made me think of you ~ another Irish poetess. He will be missed.
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This illness is baffling, she hits people differently and like you say with all the rest and meditation your body should be like that of a guru. She defies all logic, just think of the poor researchers trying to figure her out. They will figure her out, they have to! I too was thinking of you during the weekend after Seamus Heaney’s passing, he will be sorely missed. I love his poems, (not that i’ve read loads of them), I sort of feel a bit of a cheat as I went and bought two of his books on amazon on Friday, on his death bed, in my defence I planned on buying them before his passing but who would believe me! His funeral was televised this morning on RTE, it was very moving, if you have access to the rte player online you could take a peek at it. Welcome back!
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The mind is an amazing tool for healing. Well done and best wishes for future recovery!
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Thank you! My brain is going to heal me. That’s all there is to it. If nothing else can, I must. 🙂
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Beautiful. I’m still working on finding the peace and silencing my night owl. 🙂
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Oh, thank you! The night owl is the worst! It is like an addiction. Every night I’m like a 10 year old: “I don’t want to go to bed!!” I love late night chats and popcorn and movie marathons or reading a good book into the wee hours… My entire life I’ve been like this. Also, I haven’t found peace… but I’m trying so hard. This last year was a killer and I couldn’t stay in that mental space. Good luck. I’ll be thinking of you!
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Me too, insomniac since birth. It sucks sometimes. I hope you find peace. 🙂
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Reblogged this on I Spy with My Idiosyncratic Eye … and commented:
Because I can’t say it any better myself …
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So beautiful and true. You are amazing. Thank you.
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Thank YOU, Momma. I get it from you. 🙂
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Yay! You are back to writing! I check your blog every night, when I am having my end of the day “youknowwhat” on the deck, and reading it is almost like picking up the phone and chatting with you:) When there is no post I think of you, what day you must have had to not be able to write, and my heart contracts with sadness and I send you thoughts of rest, rejuvenation and hope. Maybe you feel them in your dreams?… I miss you so much❤
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I didn’t know you check my blog every night! Aw, the warms the cockles of my heart. Your thoughts of rest and hope have been working ~ the rejuvenation isn’t quite there yet. 🙂
I love you more than you know for your support and treating me like I’m almost no different. xoxoxo
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You are no different to me, I just get to see you/chat with you less, which sucks, but honestly, I still talk to you more often then any other friend! Hmmm, doesn’t that speak volumes about my social life? Hahahaha, I guess I don’t really like people (except you) so keep up the sleep and šup šup šup, lets get the uphill climb on the way😆
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What a lovely view you have. So positive. I always feel so guilty when I’m in my pjs all day, ill on the couch! Luckily, I’m starting to have some good days. I moved to the beach, and now have fresh air (except on weekends when all the people flock down, bringing boats and polluting the air.
I hope things improve for you soon. Take care.
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Thank you! I don’t feel very positive, so I’m happy you see some. I’ve definitely tried to reframe the way my brain works. The defeatist, doomsday, depressive thinking was getting me nowhere.
I’m so happy you moved to the beach. I have my “special room” that my meditations take me to and it is open to a beach. I don’t like sand or going in the water, but I love being by the ocean. It is powerful. I hope you gain strength from it. 🙂
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wow, absolutely beautiful. i love the honesty and strength you’ve shown in this post. very inspiring.
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Thank you so much! What a lovely thing to say. I try to stay zen… Be a friend to my body and brain, calming, consoling… It’s not always easy!
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