Sunday, April 11, 2010

A Great Day

Every once in awhile, the Universe sends me a day that is filled with happiness, for no good reason, really. I treasure these days. I love that there is no reason for a great day...it just is.

On Friday, it was easy for me to forget that there are good days like today. On that day, my body was wracked with agonizing pain; my brain felt as if it were enclosed in a deep, dark and ugly Cloud. On that day, if a reason came up to be happy, I would immediately have found the negative side of it.

On that day, I cried.  I rarely cry, unless the ending of a book or movie has me in thrall. On that day, I shook my fist at the Heavens, at the Powers-That-Be. I was enveloped with anger towards Whoever decided that I was to live the rest of my life like this. What lesson must I learn from it, I yelled...I am not stupid or dull...wouldn't you have thought by now I would have got it? 


There was no answer. I felt as if I had been forgotten, as if I was of no consequence. I felt alone, without the strong faith which has sustained me so well throughout this damned disease. Which is strange, because I surely was shouting and yelling at Someone...

Barometric pressure, when it changes drastically, has a huge bearing on the really bad pain. And on Friday, the weather patterns changed hourly, cold, sunny and windy one minute, cold, windy and snowing the next. My body reflected each change. There was no getting accustomed to the changes...they were like Lightning. My little weather station, which tells me what the barometric pressure is, went up and down like a yo-yo.


On Friday, even though there was a little voice in the back of my mind telling me the excruciating way my body was reacting would change again, I thought this would be forever. I could not wrap my mind around any positive thought.

I wrote, that day.  The words I wrote will never see the light of day...they will be stored with the rest of the long essays I write when I am really, really, really in pain. It is difficult to read them...especially when I feel relatively good...I shy away from them then. I prefer to forget the really horrible times, when my mind is dark and I am writhing in shooting pain and throbbing cramps.


On Friday, I tried to laugh. Laughing is good for me, strong, belly-laughing makes pain lessen. I watched the comedy network...even it, even people who can make me laugh without hardly trying...could not rouse a single giggle out of me.

I'd understood the trip to the Island would precipitate an attack. It would be unusual not to have one. I accept that, I am prepared for it. The trip is always worth it; I would not take a minute back.

But the punishment on Friday was over the top. Not one drug I have in my arsenal worked. Not one. I may as well have been taking candy. That might have worked better, actually.

I have a doctor's appointment next week. He will hear, he will watch me cry, he will tell me it is alright to cry, that I have reason to do so. He will change medications once more. He will offer, again, to place a standing order at the hospital for injections, stronger drugs to keep the pain at bay. He will send me for tests yet again, and he will offer to send me to another specialist. 

And today, I am of the mind that perhaps someone, somewhere will know how to treat this unbelievably traumatic torturous disease. There must be someone...


Surely, through the ages, someone must have discovered a way to live with mind-bending chronic pain. Without mind-bending drugs...


I could not think in this hopeful way on Friday. On Friday, even heat would not work...what felt like an almost boiling water bath I prepared actually made it worse. My body, even as red as a cooked Lobster, still insisted on  twisting and turning with pain.

A realization...an epiphany, if you will, popped up. During hospice training, as I tried to hide the fact that I was feeling pain, someone asked me why I would. Why would I hide it, why was I ashamed of it?

I've been thinking about that question a lot. Why am I so intent on appearing normal, whatever that may be, when to whomever looks at me...it is so apparent that I am not? It takes a lot of effort and energy to appear pain-free.  


I caught a glimpse of myself in a mirror in a store the other day. Who was that woman whose face was screwed up, whose mouth was turned down, whose back was bent? That was me. In a moment when I was intent on something other than pain...that was me.

I'll have to accept there will be times when my mask recedes. I am accustomed to placing myself in other's positions when I am stumped on something like this. Would I want to speak with a lady who looks embittered, as I do, when I fight the pain? The answer is...probably not. 

But there are days, like today, when my mouth is turned up, more often than not. My back doesn't seem as bent and all those wrinkles matter not. And it brings to mind the idea I might take a look at how I see others.


And I might garner my resources, as they say, and take a look at why I might feel shame at feeling chronic pain.


Today, all that is in the past. I am happy right now, just because. Pain is around, but muted and manageable. There are knife-like stabs here and there; it makes me happy I am so accustomed to them. It's an odd thing,perhaps, but for me, it's huge...


Just as huge as having a great day!

20 comments:

  1. my dearest marion, hmmf! it is not fair you are so happy on happy bitchday. understandably you are empty of bitches.

    ah, well, actually, yay! thank you universe, for easing up on my friend marion and giving her the space and means to rejoice. because, you know, universe, she deserves it.

    i think you are brave and wonderful. i've worked with many people with chronic pain and i do know pain in not never ending. don't give up for a moment. this doesn't mean you don't accept, but hell, marion, you are a seeker. you have to go forth and seek!

    love to you always my friend,
    kj

    ReplyDelete
  2. I can so relate to your post, dear Marion. Those pain-free days are like beautiful gifts from the Universe. I'm so glad you're feeling better and that your pain is manageable. I've had a good weekend, in spite of trying to work in the yard, and failing. My back just won't allow me that luxury anymore. A long hot soak in a tub with Epson Salts and a book always helps me, even if I do need help getting my aching body out of the tub. LOL! Sending you good thoughts, prayers and blessings!

    ReplyDelete
  3. sending loving vibes to you marion. hope you'll feel better soon. i was feeling extremely tired over the weekend, with spaciness, total blankness.

    ReplyDelete
  4. Sorry to hear about the chronic pain. Like the other Marion I take epsom salts baths as it does ease pain quite a lot as far as joints and muscles go. Still haven't figured out what to do with other pains though, but thankfully mine are bearable unlike yours.

    Look after yourself.

    ReplyDelete
  5. kj,

    Thank you for the reminder to go and seek. I shall do just that today...I am quite tired of medications which help a little, but not near enough. I am tired of side effects which make other things, like blood pressure, much worse.

    You've given me strength, today, to look harder. Thank you, my dear friend.

    Marion,

    I read your blog and am uplifted. I know others feel this chronic pain. Knowing I'm not alone in this does certainly help. Some days, though, I forget and am totally involved in self. And I can rarely work in the garden as much as I once did, which leads to depression on my part. What happened to the energy I once was famous for?

    Well, perhaps I'll find it, if I don't give up. That's the thing...I don't want to give in and give up.

    Alison,

    I hope you feel better today, after your weekend. And thank you for sending good vibes...I know they help. Happy dreaming!

    Jackie,

    Those epsom salt baths are terrific, usually. It didn't help at all on Friday, but that was a particularly bad day. You have listed and written about many herbs that are good for chronic pain; I shall seek some of them out today.

    It's so strange that when I feel good, the urge to seek out other ways of treatment goes away, lol! I plan to change that, today.

    Thanks for visiting, and thank you for adding me to your friends on Blog Catalog. I will check it out today...it looks interesting.

    I was trying to think how long we've known each other this morning...almost as long as I've been blogging, I think!

    ReplyDelete
  6. Dearest Marion,

    I cannot pretend to have any idea of what you deal with. I have a friend who has suffered with chronic pain for years so I have witnessed its effects and can feel for you.

    The gift of a beautiful day for no particular reason is the creator's nod to you that you bore up well with the latest challenge, especially since you chose the beauty of the visit to the island knowing what would be in store for you.

    I suppose, though it may not feel like it and I know you wouldn't give thanks, but because you accept the gift of joy with all of its ramifications, the universe is somehow in balance.

    God bless you with more gifts of joy to balance out the hard times,
    Annie

    ReplyDelete
  7. dear marion, my mom suffered chronic pain for years from arthritis. she ended up taking prednisone ?? for years and years so much so that i think she became immune to it. it sounds very difficult. do you know of John Caobt Zinn? He's written a few books and runs or did run a pain clinic in Worcester Mass where they used meditation to help folks manage chronic pain.

    ReplyDelete
  8. Hello Marion,

    Yesterday I watched a documentary about Dr Emoto's work on how water carries the energy vibration of thoughts, music, even of words written on a piece of paper. It showed how tap water with no crystals grew beautiful ones after a group of children sent loving thoughts of gratitude to it.I think I am going to try experimenting with writing words of healing on the water jug and see how that works!

    Sending you healing vibes for a pain-free life!

    ReplyDelete
  9. Annie,

    "The gift of a beautiful day for no particular reason is the creator's nod to you that you bore up well with the latest challenge"...Thank you, Annie. When I am hurting badly, I forget most of what I've learned through life. Life is made up of tests and challenges, after all. And of course, the universe would need balancing after the good was received and taken with joy...there is most times a payback, I've found, of some sort. Checks and balances...

    Suki,

    My mother was on prednisone for arthritic pain, as well, in the old days. She tolerated it well for a few years, but became bloated with edema, which did not bode well for her blood pressure. Nowadays, there are a other medications for chronic pain, few of which my body tolerates, because I have the same problem as my mother...Edema and hypertension.

    Pain untreated also leads to hypertension in me. It's a continuous cycle. Lyrica can do harm to kidneys; but on the whole, I can tolerate it, as long as I keep checking with lab tests. Yesterday I went to the doctor, convinced it was Lyrica that was causing edema.

    It was not. It was one of the blood pressure medications I was taking. I'm off it now, the edema is fast disappearing. The doctor then upped the Lyrica dosage, and once more, the pain is on the run and so far, manageable.

    My problem is that I have not accepted that I must take these medications. I keep thinking there must be a better way...it's just I haven't found it yet. But maybe there isn't another way, maybe I should just knuckle down and accept.

    Miruh,

    I've watched Dr. Emoto as well...isn't his work fabulous! Have you tried giving Reiki to water? Writing words of healing on a water jug sounds wonderful, with Dr. Emoto's work in mind. I will try this as well. It can't hurt and might just work. I know first hand that Reiki gives relief every time. I am thankful that Graham is a Karuna Reiki master; his abilities have given relief so many times I can't begin to count them.

    Thanks for the healing vibes...much appreciated!

    ReplyDelete
  10. Indeed, it is the ebb and flow which helps to ease the pain. There will be those good days which make up for the bad ones. That to look forward to is our only hope. Doc tells me its the humidity which effects the bad days in my back, but I suspect it is the atmospheric presssure which is the variable.

    Or as a neighbor once told me: "life is a bi---, then we die". I try not to hang out with him! What a downer . . .

    ReplyDelete
  11. how you manage to write such an uplifting post when you are suffering from so much pain is a mystery to me. I feel so fortunate that whatever time has thrown at me, I don't have pain to deal with, but I hope I would be able to deal with it with the dignity that you do. Please take care. Hopefully the next doctor's appointment will lead to a breakthrough. There is always that hope.

    ReplyDelete
  12. I can't imagine what it's like to have to deal with chronic pain. I'm sorry you do.
    For someone who's so in touch with Spirit, the Universe, I imagine pain never coming your way.
    The reality is 'you're a spiritual being having a human experience' and as humans we'll have to bear our share of pain. Still, that seems so unfair to me that some have to bear more than their fair share.
    It sounds as if you have tried to ask your pain what it's all about. You've sat with it. You've nurtured it and cursed it.
    I'm glad there are good days that find you.
    I wish you an abundance of those good days.♥

    ReplyDelete
  13. Goatman,

    I think it's the atmospheric pressure as well. Dry climate or wet, it doesn't really matter to whether I feel pain or not. But when the barometer moves, especially a quick move, either up or down, my legs feel as if they are moving underwater, and stabbing pain takes over everywhere. And there is not a thing I can do about the weather.

    I know there are people who are weather sensitive; some so sensitive it is very debilitating. Thank you for saying you think it could be atmospheric pressure...for some reason, that makes me feel better.

    And I'm glad you're not hanging out with your neighbour...I agree. That is a complete downer...one I'm familiar with from a previous marriage.

    Jan,

    I hope so, too. They've come up with a couple of medications which help not so long ago. It depends on the person taking them as to the side effects, which can be rather horrible. It's a case of the cure being worse than the illness, sometimes, lol!

    Something that targets the nerve which is causing all this would be much appreciated. And without side effects. I live in hope!

    ReplyDelete
  14. Lolo,

    Thank you for your wish of an abundance of good days. This is what I strive for. And yes, you are right...as humans, sometimes we have pain...and sometimes, we have none. I think the Universe tries to balance it out...as humans, though, I don't think we always see it when we have a chronic disease. We think we are picked on, sometimes.

    It's not the case. There are many, many people who have something far worse than what I have. Mine is not life-threatening, while others may die from their disease. I have a lot yet to do in this life, and I am so thankful that if I have to have something, it will not kill me.

    Good days or bad, thank you for your insight, lolo...I so appreciate it!

    ReplyDelete
  15. Wow! My own pain levels and moods are not so volatile, and I never had the faith you lost (at least you lost it while in your down mood), so I can neither take comfort it in nor rail against its absence.

    As for humor, I guess I'm always capable of a laugh, but most of time I can't find one.

    Cry in front of a doctor? Now THAT'S an interesting concept, but then I NEVER cry out of pain, despair, or frustration even when I'm NOT in front of a doctor. Peggy does, so I think it's probably a gender difference. I rather envy you the emotional support that your doctor at least tries to offer.

    The flowers are lovely.

    ReplyDelete
  16. I send you happy thoughts across the miles. I hope your visit to the doctor brings you some relief. - Margy

    ReplyDelete
  17. Snowbrush,

    It probably is a gender difference, Snow. I only break down in front of my doctor when it is so bad, I can't help it. But he is a great listener and tries so hard to help...it is easy to cry when one is confronted by such sympathy.

    And he knows I have not yet accepted the fact that this will go on for the rest of my life...I keep hoping it will go away or go into remission, at least.

    I hope you find some surcease from the pain which is currently bothering you. And you know what...ya gotta learn how to rant and rave in loud tones about that pain...it's such a great release!

    Margy,

    Thank you for the happy thoughts. Eventually, I hope my doctor and I will find something that will give relief...we haven't tried everything yet, he says. So a little ray of hope...!

    ReplyDelete
  18. The only thing chronic pain has done for me is increase my "bad words" vocabulary. I am glad you get gift days - my daughter and I dubbed our moments of bliss "happy moments" and I get several a day, but a whole day of happy moments is truly a gift.

    ReplyDelete
  19. Pauline,

    I had no idea you and your daughter suffer from chronic pain. If you have written about it, I must have missed the post. But I'm so sorry...I know this chronic type of pain is hereditary and I really do not want to pass it on to my daughters. I'm sorry that happened with you and your daughter.

    "Happy moments"...I like that. A whole day with no pain is impossible, it seems, since there are always those stabbing reminders...

    ReplyDelete
  20. Dear Marion,
    I am glad to hear that you had a beautiful day and may you have many more. It is difficult to live with chronic pain because of it's unrelenting nature. Hopefully, warmer days will bring relief. Flowers and healing energy from Northern Cal.
    Diane

    ReplyDelete

Google