I've so had it. I try to stay positive, try to be hopeful, try to think of the bigger picture, but in all honesty, today I'm fed up.
I haven't written here in awhile simply because of the malaise of chronic pain. I actually had a decent summer pain-wise, and after my last blog post, I began feeling so hopeful and creative again. The boredom I wrote about in the last post lifted, to the extent that I was even back in my art studio.
But then the pain once again reared is cruel and hateful head, and while I've tried to come to terms with it through acceptance, through prayer, through whatever, it ends up having a crushing effect on me, and all momentum is lost in accomplishing anything, even paying the bills.
Frankly, I'm exhausted. I'm sick to death of this pattern repeating over and over--these emotional ups and downs that have begun to feel like some kind of sadistic torture.
What's saddest is that I feel like life is somehow passing me by. With all I have to offer, with all the things I love to do, the best I can manage most days is to write in my journal--looking for clues as to what will set me free--and watch television.
Entry after entry, I scold myself for not being more proactive, for not changing my habits, pain or no pain, as I can't stand the malaise felt at the end yet another day that has once again raced by with nothing to show for it. I've become the passive observer instead of the active participant in life, and that's a hard thing to accept indeed.
When I actually DO get myself moving, I'm certainly the better for it, as the feeling of creation is like no other. I love the process of a painting--watching it come to life before my very eyes, and I even signed up for the Oct. 18th Hoboken Artists Studio Tour, feeling certain that I'd have a lot of new and exciting work to show.
I also wrote a new song in August, which thrilled me to no end, as it was the second song I'd written in about five years. It seemed to herald in a new creative period, and I was thrilled at the thought.
I'd also been journalling about some sexuality issues, which had been put on the back burner during this awful 5-year pain period, and just so happy to be making new insights and overcoming old fears. I even envisioned myself dating again.
But at some point in early September, it all came to a crashing stop, as the MS Contin was no longer controlling the pain, and I was prescribed low-dose Percocet as a supplement. As usual, this was the introduction of a double-edged sword, as I needed the med to curb the pain breakthroughs, but it only added to my tiredness. To motivate myself while having both pain and fatigue (along with frustration and disappointment) is an enormous task, I can assure you.
I wracked my brain trying to figure out what had changed--what made the pain come back with such sustained intensity, but I could make no sense of it, just like all of the previous episodes.
A part of me likes to think that there are bigger lessons to be learned here, that this is all part of my "spiritual journey" and all that shit, but I'm sick to death of being so fucking positive and hopeful and helpful. I'm sick to death of pain and the addiction it ignites. I'm sick to death of trying to live with it and be a better person. I'm sick to death of being sick to death.
I'm so numb to the ordeal that I can't seem to even cry anymore, which at least used to provide a catharsis--a soothing of the soul that could purge the bad feelings, if only for a little while.
I'm off to the Jersey City Studio Tour now, where my friend Lynda is showing her work. I don't want to go, but I don't want to disappoint her either. What I want to do is medicate myself into oblivion to get some relief, but that will only make me sleep, and then I'll awake after the sun has gone down, realizing that yet another day has been lost. No matter what move I make, there seems to be no good option. Even if I could summon every ounce of courage I had in order to forge ahead, what decision would I make that I'm not making now?
I'm in total darkness right now, and can't see a speck of light anywhere. I keep spinning and looking, but there's nothing. And so I just sit, wrap my arms around my knees and wait. I don't know what else to do.
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Comments
I wish I could do more than tell you that I love reading your posts, and I still go back to the old one.
Wishing I could fix this for you.
With love today
And Waking--thank you for your compassion. It brought tears to my eyes, which have been dry for a long while now. I wish you could fix it, too.
You cannot be expected to be "up" all the time or even a part of the time. Allowing oneself to just give up in the moment, for a day or wahtever it takes, is just fine. You are entitled to be effing pissed and defeated by this unimaginable pain. Damn right, you are! You will continue to have your good days and your horriffic days, no doubt. All you can do is what you can do on any given day. When it feels right to you, you will find humor again. When you have the capacity, you will feel positive again. When you feel the strength, you will plow through another day, week, month. Until you feel like it, you go ahead and feel anger, defeat, sadness, pity, numbness. Those are all indications that you are alive and kicking and that ain't all bad. So much love and virtual hugs for you.
In OS there is often so much BS...and then here you are with your brutal honesty and facing brutal facts in your life.
There are many kinds of courage in this world. Taking the time to share your story when you just don't feel up to in inside of you is a very special kind of courage indeed. I suspect you are making a big difference in the loves of others with this piece.
I often am tempted to return to opiate usage for my chronic pain. I don't because I know its temporary relief will play with me until once again I'm consistently in the fog. Staying within yourself is difficult to accomplish, unless done one moment at a time. Ride the good, understand the bad. As always, I offer you my prayers and support.
Take care of yourself and try to subject yourself to humor, every day, if at all possible. Lot's of good people are sending you warm thoughts right now!
MJ
I wish there were something I could do.
Get better soon, sweetheart.
Marcela
I, too, wish I could fix it. Or wrap you in a soft blanket. And just sit together. (((((hug))))))
Keep writing.
But maybe if you took the painkillers, your body would settle down. Because stress causes pain which causes stress which causes pain which causes more stress which causes more pain.
Set aside a few days of no one (especially you) obligating you to do anything. Then rest and take your pain killers. Then stop the pain killers and continue to rest or at least take it easy. See if the pain stays away for a while, once you've had some rest. There are painkillers that have a rebound effect, so they have to be avoided.
Then maybe you'll just need to take a couple of days now and again to give your body some pain free rest. And saying "no" or "I need help with these gigs" has to be part of the protocol.
Rated XOXOXO
No one has a harder road than the artist.
I will think on this more, and perhaps come back to your site. But these thoughts came quickly, so I offer them now: COMPASSION BEGINS WITH SELF. Please please please be gentle with you. No one else may be able to, but it must begin with you loving yourself enough to give yourself that gentle golden break. I don't know anyone who is going throught this olympic sized medical insanity who doesn't want to piss on the whole world or God/Goddess or scream at the paper man for the pain they are in.
Kuan Yin is the buddha of compassion. I have called out to her and she has answered me. You may want to call on this spiritual support system.
Sometimes we need to get out of our heads and just DO. Just ground ourselves and do, and stop asking and looking for answers. That has been my own answer lately. The answer itself is most unsatisfactory, but the do-ing is really empowering. Hope this helps.
I can't tell anyone whether they should take drugs or not, but I do understand the feeling of another monotonous day going by with nothing to show for it. Whatever you have to do to have meaningful activity in your life, creative activity, do that as much as you can, and give yourself a break every chance you get, physically and emotionally. I hope things change.
You move me with this. And you write with focus, consistency and given the subject, restraint.
In the last two years I have had two scheduled surgeries and four emergency surgeries. I know from pain and pain meds. For what it's worth - and I realize we are different and this might not apply for you, but it's all I've got:
1. Keep writing. OS is a Very Good Place.
2. Pick smaller things to accomplish on the bad days. Make them potent, but doable
3. Paint or draw the pain. This one I only did twice but It helped me.
4. Once in a while, fuck positivism. It's a random life to which we bring meaning, and bringin' the meaning and being positive is good, but it wears you the fuck out. So once in a while set it aside, no: kick it the curb, trash it's ungrateful ass. Howl UNFAIR and throw piety , nobility and positive off a proverbial cliff. Then laugh at how how that only helped a little bit.
5. Don't make a steady diet of it but these books helped me a LOT:
"The Ten Thousand" by Xenephon (how 10,000 Greeks in the 4th century bce fought their way back from Persia to Greece). NOT full of feel-good upbeat messages, but the most amazing story of grit and perseverance. Simailary: "The History of the Ancient World" by Susan Wise Bauer (the best history by the best historian ever; she's sarcastic, glorious, and breaks it into a series of brief overlapping chapters, like a thriller -- it somehow gave me such blessed distraction, such perspective, all those ancient, pointless struggles)
6. Become an amateur Buddhist. They are so right about lost of things (lovingkindness, ending of suffering - ha!), not so much about others (reincarnartion, karma). But the ideas of being kind, out of recognition of how universal suffering is, helps me a lot because it leads to to
7. Help someone. It's "easy" for me, I have three approximately ungrateful daughters to attend to, all teens or older. If you expect some mystery and beauty on this, the most important tip of all, I just don't have it today. It's a grim business, living well, enduring, in order to help another along, or to inspire. But even if it's one day a week, as a volunteer, NOTHING recharges like forcing oneself out toward another. In a very practical way, it works.
For what it's worth, If I could hold your pain for you for 5 minutes, I would. I am used to it at this point, too. It's a DAMN shame we can't do this for one another. Intelligent design my foot.
I have no words of wisdom for you. I can't tell you how you go on as you are; I can only say, in the immortal words of a novel/movie villain, "The world is a more interesting place with you in it."
Sending you good thoughts and prayers, that you can get through this trying time. Praying that your doctors can finally figure out what the trigger is.
I don't know when or how it will come exactly, but you can have your miracle.
I have recently been reading about people with terrible conditions who were freed, astoundingly.
Mom was so (rightfully) angry about what had happened to her that she could never get past it. She wore her teeth down grinding them against pain, slept with a washrag in her mouth to keep from screaming, gritted & tensed up & until her whole body was stiff & shaking, cursed doctors, God, her shitty luck & life in general.
The times that were the best for her were times when she was deeply involved in something else, anything else, at which times it was as if her brain was too full to let the pain in. She also had some luck with a wonderful acupuncturist who had a soothing voice & touch was the only alternative medicine she allowed into her life. He made a tape for her to listen to, hoping to help her relax. She loved to garden, sometimes in her garden she seemed to get past the pain, creating beauty even when feeling like beauty had deserted her.
She also took MS Contin for several years, supplementing it with morphine sulfate for breakthrough pain, & also antidepressants to help her relax against the pain. At one point she was taking over 30 pills a day. It was crazy. She had some luck with Lyrica. But taking so many pills for so many years messed her up in other ways. She was too pissed off to ever meditate. I always thought, If I can just get her into a peaceful place -- it never happened. (My mother was also funny in that she'd taken meds all her life for various issues, but when my brother suggested marijuana she was appalled that he'd think she'd take "drugs!")
You write so honestly & eloquently about your battle with pain. Your posts should all be put into book form & passed out at pain clinics so others can realize they're not alone. When I read the Reynolds Price book where he details his own battle with pain, I felt as if I could better understand my mom's pain.
It's good not to be alone & to know that people love & support you. Keep writing! Sending all good thoughts & love your way.
Days are wasted, I am wasted, a constant wish for more, a need to self-medicate, a need for something new and beautiful but too weary to make it happen, forcing myself into life, the fatigue of constantly swimming upstream.
I wish we were neighbors and perhaps we could make small goals for one another and check-in - or just realize there's some common ground there. Sometimes that's enough.
In no way do I mean to diminish your disease. If anything, I feel even lamer - that my deep world-weariness is not based on a physical issue. That I should "snap out of it."
Fuck - I've been trying to "snap out of it" for a long time. I think I've relinquished myself to "slipping into it" which is scary. Apathy, you know? The old "fuck it" attitude. (I will say there's a little less self-loathing and guilt in this new "whatever" place.)
Sorry - rambling. Your piece hit me with its openness and your unfaltering ability to stare directly at the beast.
JustCathy--I know what you mean about trying to be at peace with where you are and what you're going through. From your lips to God's ear!
JD--You made a beautiful typo here: "I suspect you are making a big difference in the loves of others with this piece." I suspect you meant to say "lives" but instead said "loves." So sweet. I love when that happens.
Owl, MJ, Scanner, Duaneart, Marcela, HellsBells, Mypsyche, Rita, ChicagoGuy, LeaLane, BillBeck, GinnyRose, Cap'n, Iamsurly, LittleWillie, Tinkertink, Harry'sGhost, Sirenita, PoorSinner, Michael, Bill S., and Delia -- I don't know what else to say other than thank you for bearing witness to this. Your gentle and loving comments are so deeply appreciated.
Chuck -- I'm intrigued by what you say here: "Staying within yourself is difficult to accomplish, unless done one moment at a time." Would you care to elaborate?
Zuma -- Oh, I do take the pain meds. What's difficult is that if I take them for a few weeks straight, my body becomes dependent, so I go through withdrawl if I hit upon a good week where I don't need them. It's all part of the ups and downs that are so frustrating and so tiring. But it sounds like you know what I'm talking about, and I thank you for your sweet thoughts.
Annimal -- I really absorbed every single one of your points and will take action on each. Deep gratitude goes out to you for such inspiration.
Greg -- I can't believe how much time you took to write such a comprehensive plan of action! As with Annimal's suggestions, I'm going to DEVOUR each point. I will paint my pain tout suite! Funny what you say about volunteering -- I did do it twice, once at the local homeless shelter (I made turkey gravy for 100) and once at the local hospital, but unfortunately I couldn't sustain either commitment. But I do try to smile at every person I pass here in Hoboken. It's a giving thing to say hello to everyone. Of course, I need to get OUT in order to do that. :) Thank you, thank you, thank you.
Dickens -- Yes, I've tried acupunture, which worked brilliantly for me with certain health issues, but alas not with this one. I do know that a trial is going on with Botox for facial pain. I'll google it to see if there are any results. Thank you!
Suzie -- What an eloquent, if sad, story about your mom. My God. Thinking of her stuffing her mouth at night in order not to scream from the pain is such an awful picture. What things we humans go through, right? But I'm inspired by her tenacity to get out and garden. Yes, it's true that when I'm engulfed in loving, creative absorption, my focus does change and I do experience some relief. The hard part is motivating myself to show up, so to speak, at the canvas, or paper, or my art studio. Thank you for sharing your thoughts and your love.
Beth -- Good God, girl. I can't believe you think that what I'm going through is worse than your depression. As I wrote in my "Understanding Suicide" post, nothing, ABSOLUTELY NOTHING, is more painful than a deep clinical depression. Please re-read it and understand that what you are experiencing is MOST DEFINITELY a physical disease. You're not lame or lazy, and your world-weariness has been earned. I've been through a lot, but my suicidal depression was the single worst thing I've ever experienced...even worse than losing 70% of my blood in one shot! You will most definitely be in my prayers tonight.
And Juliet -- Actually, no. I've never once heard of that book or program. I'm going to go to Amazon right now! Thank you so much for reaching out and suggesting this!
As I said when I opened this comment, I just can't believe the love and support I get at OS. I felt like I was whining and complaining, almost expecting people to tell me to suck it up (shows you what kind of childhood I had). I actually felt nervous when I saw so many responses as this is what I expect.
You people are teaching me something quite different. Amazing.
That said, I wish I had some words of wisdom for you, but frankly, after spending the last 10 months on OS and reading posts from people in such dire straits and desperate situations, I have come to realize that my advice -- like my own "troubles" -- is crap.
I am, however, pulling for you all the way.
Rated for tenacity and spirit.
The comments on your post are full of advice. I hope some of it will be useful to you. At least you know that a lot of people here still care. The trouble is that each person's pain is unique and each person's response to pain is unique.
I hope that you are not trying to deal with this alone. If your friends are friends they will be there for you. And I hope you will lean on them a bit when you need to and be there for them when they need it. I do not think any of us can deal with chronic pain without doing that.
I am praying for you.
Monte
A few more thoughts. What is it about being positive? Where does that expectation come from? It seems to me that with the load you are carrying, just being your self, however that is in the moment, is healthiest for you. It takes a lot of energy to "be" something you're not feeling, in any given moment. Is that energy you really have to give over?
Do you listen to music that lifts you, and heals you? There's lots of good stuff out there. But music is one of those things that we can overlook and not get enough of. I am staying at the Y in Honolulu right now, and I am missing my music!
When we do, and get into the doing of something, and forget ourselves, answers come. Or they don't, but we still forget ourselves for a moment and get lost in a task, or involved with others. Either way, time has passed. Woohoo! Blessings on your day, and your way, and your goodness. Annie
THIS COULD BE PUBLISHED
you have such a hard task
don't be too hard on yourself
just do what you can
if it is too much, it is too much
a person can take just so much
I think you have really tried
so don't be too hard on yourself
I wish I could think of something better to say
we love you
PS: Maybe the anger is not only justified, but healthy?