Want to hear a funny story?
Well first, some housekeeping. It’s been more than a while, I know. I feel like an idiot bear emerging from hibernation 3 months late and everyone’s like Dude, what have you even been doing? Getting crushed, that’s what.
A health update for 2019: mine is still mostly missing. Hate it when that happens! 2019 has continued to be a slow-rolling, sick train, punctuated by outings to every type of doctor, assuming I don’t call in sick to the appointment. Calling in sick to the doctor; what an absurd reality.
This elongated crash state feels like some kind of warped dream when I reflect on it. I would blame this on the repetitiveness of days that can start to feel indistinguishable from stagnancy. It feels like…
That last photo was on my way home from a cystoscopy, which they put you under for, thank Gawd. But I was a little…out of it. The procedure is supposed to help the interstitial cystitis, but low and behold, I still find myself having to pee like a racehorse a LOT, soooo, maybe it’s just taking a while to work. Here’s hoping.
As always the creative challenge of life with chronic illness continues. What a strange conundrum, living with a body that doesn’t know how to function as a body. So, what to do?
Reading Murikami’s 19Q4 followed by Killing Commendatore, which I’m sad to have just finished, have kept my imagination wild and busy, and I wish I could thank the guy personally for what joy he’s brought into my life. Reading Murikami’s stories doesn’t just give you ideas to reflect on–it’s a really involved experience just reading one of his books. It’s very involved somehow. As though a real exchange were taking place, but I don’t know how that is possible.
Before walking home from my parents some nights, I think of the characters inside the pages, waiting on me to get into bed and open the book so they can get on finding their way. It’s by far the deepest I’ve fallen into a body of work, fiction anyway, and I have absolutely no idea how he does it. I’m just glad to get lost in something so positive. It’s too easy to fall into counterproductive thoughts or habits when you’re so physically limited. So as always, it takes a good chunk of mental exertion to stay on the right side of the experience and to be cautious in how I tell myself this is all unfolding.
For no good reason at all, I get into bed at night and truly believe I’ll be improved tomorrow. I imagine all the things I’ll do. All the catching up and even what clothes I’ll wear while I’m busy bustling around the house. I can see myself cleaning out closets and on the phone, checking things off my list–Monty following me, room to room. I can envision it all, and drifting off, I always expect that tomorrow will be better. And yet for roughly 120 tomorrows, I’ve awoken to mostly a repeat of the day before. Oh real great Universe!
Now and then I receive some improved feeling that I’m finally rounding the corner of this thing and the worst is over. Perfect! Then either hours later or two days later, I’m paying a high price for what feel like very petty offenses. The invisible line of this thing– it’s the most frustrating part. It makes any kind of management of it feel impossible.
It’s like driving through a backwoods town in the middle of the night without any headlights on. The “warning signals” of this illness are meek and inconsistent. You have to pay such careful attention to what can be a trigger, but even still, it seems sometimes you crash for no reason, or have a full month of migraines for no good reason. It can be hard to see straight at all and you wish you could just turn your danged headlights on!
I am surprised this crash has endured so long. But maybe it’s silly to be surprised. It’s certainly worthless to take it personally, and yet it’s easy to feel that way. Waking up to the same fight day after day can easily fuel the ego, which will try to convince you of just that. That it’s personal and unfair, and going down that route doesn’t do one bit of good. I have to keep things straightened out in my mind and brush off ideas that are useless and untrue. Maybe the truth is simpler more often than it’s complex. As Tolle says, “It’s neutral. It always is as it as. Nothing more.”
The truth here is, this is the nature of the illness I have. It waxes and wanes, so there’s no reason to be caught off guard or believe I’ll never improve. The fact is this is a disease behaving like a disease. The physical toll and reality are hard enough, no sense getting hit with a second arrow, right? The second arrow is feeling bad about the first arrow. The first arrow is being chronically sick in the first place. One arrow only, please and thanks.
Defaulting back to simple truths is how I’ve been trying to handle all of this, psychologically, but of course it’s not always so easy. Actually it’s never really easy, but it is meaningful when I can find joy and purpose despite it. I’m happy to at least know what ideas and thoughts aren’t helpful to the situation and to vanquish them before they have a chance to take hold and grow. I’m happy to have the counsel and ear of my mom, who hears me out and comforts me when the struggle feels too big, without me barely having to say a word. Talk about gifts you cannot buy.
Despite knowing certain truths consciously, I find myself always questioning myself. I lay in bed thinking This is obnoxious. There must be something I can do. But some days really are just bed-to-bathroom days, and I have to be honest about what I’m capable of. My life feels split in two sometimes, because so much of my communication with people is through text. So I’ll be lying in bed feeling deadly, but texting smiling emoji’s with plenty of exclamation points to show my love and enthusiasm for other people, and I think how strange it is, the dichotomy of the life I project sometimes and the one I’m actually living. I imagine maybe everybody struggles with that, in their own way. We all contain multitudes.
The timing of all this is crappy, of course. There’s never a good time for a crash, I suppose, like there’s never a good time to break up. But there are worse times for each. Being this crashed in the middle of trying to pack and prepare for a move is like the timing of getting dumped on your birthday. Oh well. Even after birthday breakups, people recover. I think.
Last week I was tired of waking up and feeling like I was on my deathbed, naturally. So, I figured there had to be some good meditations on waking up and getting your body psyched for the day. Right now, waking up feels like I went to sleep by getting hit in the head hard with a frying pan, like the characters in cartoons. I’ve also been very weak in the mornings and getting out of bed has been really challenging.
So, I find a mediation easily on youtube, geared toward waking up and energizing the body. It’s 15 minutes. Great. I press play. 25 minutes later, I wake up to a commercial playing and realize the meditation meant to wake me up peacefully sent me back to sleep. Swing and a miss! So, I try another.
This one is also 15 minutes and looks promising. Energizing! it claims. So, I make it through the first 13 minutes. I’m having a hard time focusing because I’m really weak, I’m fighting the bone-crushing fatigue and my migraine is back. But on with the show. The woman guiding the meditation says to repeat the phrases she’s about to say out loud. OK… “Repeat after me” says the slow, assertive voice emitting from my phone. “I feel strong and powerful.” I can’t help but let a smile melt across my face. I say it anyway. “I feel strong and powerful!” “I feel energized and ready to take on the day.” My smile grows bigger. “I feel energized and ready to take on the day.” Now I can’t help but actually laugh. “My body is healthy and my state of mind is focused.” Ummmm…
At this point I am half repeating and half laughing, because I don’t feel these things the woman is saying, like at all. But the fact that it’s making me laugh feels like a success all on its own. A few minutes later, I fall back asleep. BUT, it’ a very peaceful sleep. So maybe it wasn’t a total loss. I imagine once asleep I was “energized and ready to take on the dream.” ;)
Maybe when I’m a little stronger it will work. I don’t think it will be long now, yet I still have no idea why I think that. Owell, it feels good to believe it anyway.
Health, Happiness, and I FEEL STRONG AND POWERFUL
6 thoughts on “One Arrow Only”
Gifts you cannot buy, indeed. You simply can’t talk about the psychological components with civilians. You just can’t, even the most well-meaning among them. Thank your mom for me, and thanks for your continued honesty.
It’s been one of these days, man. Crying once my back is turned on those I just smiled at and said “I’m fine” when they ask “How are you?” because it’s detrimental to be the Sad Sally that always has something to reply other than “Fine”. Is it my legs today? My neck? Lumps? Knees? Shooting pains, peeing on myself? Migraines? Spine? Which combination, Sad Sally? Ha!
Fascinating observation. There’s got to be something to it, saying “Fine” when you’re not fine, just like everyone else does. Can I reverse engineer that damaging concept to somehow work for me? Thoughts?
I know full well the real deal but I guess I have to exist in brokenness anyway for now. Ha! It’s that time for watching myself hanging with a single finger to the edge of the cliff, and knowing that I, alone, can save myself despite what utterly lacking tools I brought for the climb. A box of tissue and some Icy Hot. No wonder I keep sliding. Hehe.
And since you’re so honest I will be. Yes. Some days I quit trying and just give up. It’s a good starting place, starting over. The older I get the more I see that, come hell or high water, some days I just have to quit because…I choose to Can’t.
So…this is where strength blooms. That highest peak where you can’t see anyone, not even with binoculars, and you have apoxia and your fingers are shredded and your legs won’t move anymore but you gotta make it back down to the bottom. The only solution is to do it alone and against all odds, without any aid, and with no one knowing and no one really being able to understand. And no one is ever even going to know the brutality of what I’ve survived, and they’ve survived their things that were every bit as important to them as these things are to me. And maybe we’re just not supposed to talk about them with anyone but mom. For me, my daughter and husband. Thank the stars for people like them that somehow can bear to keep us around. ;)
Here, have a heart <3
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Thank you for you heart :) Many many days it IS up to us to save ourselves, other people can only help us so much. But it is in keeping our own spirit alive that is more important than feeling physically well enough to do “big things.” If our spirit is lacking, the shape of our body hardly matters at all. We have to fight to be here, fight to matter, and fight to keep going and make these trips around the sun count somehow. There are ways to do it, but it does require thinking creatively, acknowledging this hardship and pain for what it’s done, and yet somehow being able to transcend it–make something loud and large and powerful from it, even when the illness keeps us small and quiet and unable to do more than make it to the bathroom and back. We have our reasons for enduring what we are right now, but I have my reasons to believe it will be different, we will be different, better, soon…if we can just hang on. That takes relying on one another, and at least the internet for all its explosive noise and crap, allows for connection of people like us, who would otherwise be left unseen, or heard, but most importantly, misunderstood. At least through our words we know we are understood by strangers even if our loved ones don’t quite get it. In the end, it’s all the same. All my best to you, hang tough! You know I will be doing the same.
Hi Mary, I just want to say how much I relate to you and feel more than a CFS connection but a real soul connection with you. Your big heart and loveliness shine through everything. It is beyond tremendously huge to make a move like you’re doing and I think it’s understandable why you have been so tired and crashed. Although entering my 13th year with this disease, I also know that it’s just so unpredictable too and the answers are frustratingly elusive. I’ve been reading your posts and have not responded before but just wanted to let you know I really see you and I feel what you’re saying. Do you also say it so so well. Your real and have a sense of humor and wonder and like I said true loveliness. And I relate to your posts more than a lot of things I’ve read. I was just re-reading this and some how some things got erased in front of my eyes but I don’t know what it was and I’m just going to send this off instead of waiting any longer. I am in at rough crash and have been for quite a long time so I’m sending tremendous compassion, understanding, and support your way.
I live in Palo Alto, California and I am 57 years old. Thank you for all you did with all the signatures to NIH. It made a difference. It’s very heartening to see the tremendous progress being made in terms of visibility and research. Hoping big strides will come sooner than later.
A big hug to you, Wendy
Probably voice recorded – from iPad
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Wendy, thank you so much for your kind words. You can’t know how encouraging it is to hear from *perfect strangers* and yet know that we’re at a certain understanding with one another, simply due to our experience. I really appreciate your support and message to keep going. It helps me, really. I haven’t posted in a while and everything I write just reads so “take it or leave it” to me. I think this long long crash has really started to drain my mind and spirit, and I’ll have to work even harder to keep things light and to keep laughing no matter what I feel like physically. But knowing I’m not alone in all this is always reassuring and that my words have reached anyone and impressed something positive on them is all any writer could hope for. Thank you again, and hang in there. I will if you will. :) All the best,
Mary, your meditation story cracks me up. Your sense of humor is your super power! We have so much hope that Ron Davis and Rahim Esfandyarpour’s successful nanoneedle blood test will lead to effective treatments soon. Wishing you STRONG and POWERFUL days!
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Hi!! Thanks for your kind words…having a sense of humor is what I think has saved me throughout all of this. An entire day of crying can be redeemed with one good belly laugh at the end of it, and I am usually able to find at least one reason to laugh. It doesn’t take it all away, it just makes it all bearable, and that’s the only way to do this, I guess. At least I don’t know any other way. But I also know corresponding with people who *get it* has always been hugely cathartic, and I’m always thankful to find someone who seems to understand, or who feels understood after reading something I was able to write. It’s a give and take, and I’m happy that even as virtual strangers, we’re able to be here for one another in this unique but crucial way. Thanks for reading, and for reaching out. It always means a lot to me! All my best,
Mary (and monty:)