Herculean Efforts in the Face of Pain

Woke up again with migraine pain. Day 6..7…I’ve lost track.

I called a friend yesterday for advice on a stuck place in my work. Was told that I am letting what I *perceive* as limitations stop me.

I don’t think this pain is a percieved limitations. It seems pretty damn real. It seems pretty damn limiting.

Apparently, some people can write books while paralyzed by just blinking one eye. Some people can write books while brain damaged. It’s amazing, isn’t it?

I don’t feel like I have the inner resources to be some people.

Still, I am trying to shift my perspective. Trying to think of how I can return to teaching — something I quit because I could no longer trust my body to be well enough to show up when I was scheduled. I’m trying to get around that limitation.

But mostly, I am angry. Angry at the illness. Angry that people can’t see how much it effects me. (I can count on on hand the number of people who truly “get” it. Lynette, you’re number one, love.)  Angry at how alone that makes me feel.

Angry that I don’t get more credit for all the herculean effort it takes to do the things I do in just one daywith pain: feed my children; endure the pain of the traffic noise as I walk them to school; exercise regardless of my condition; be emotionally present to my family, my readers, my friends. Not to mention all the extras it takes just to hold a body together when it is this frail: the length of time it takes to shower when you can’t move your limbs without pain; all the hours in the pool, on the yoga mat, at the doctors; the enormous expense of medications and supplements and alternative practitioners. Even my gym costs more than normal because I can’t stand the noise of the popular, cheap clubs. Does anyone see this? This doesn’t flow, it doesn’t come easy. It’s a hike through the desert, every single step of it.

Today’s Plan:Move on Anyway. In spite of. In the Face of Pain. I’m not well enough to bike to the club to swim, and I don’t have time to walk because of a doctors appointment. But i can do yoga at home. I’ll cook from scratch so  I can “eat clean.” Write and record the Do Less post for tomorrow. Find a new doctor (requires a bike or bus ride). Walk to pick up the kids from school for choir practice. Walk to choir practice. Walk home. Make dinner (in pain. I hate that part.)  If the pain in manageable go to my own choir practice (Tho this kind of singing in on my Mondo Beyondo list, I may have to quit this because I’m usually in too much pain by evening.) Mourn the fact that my brief dalliance with moderately pain free living has passed. I will do all of this — and more — in pain. Despite pain.

What I won’t do because of the pain:learn how to edit my podcasts, learn how to set up an ecourse registration page (can’t concentrate enough or read enough), have sex, truly enjoy anything I do (hurts to much), ride my beautiful bike instead of walking (everything takes so much longer on foot), laugh.

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{ 20 comments… read them below or add one }

Darlene September 3, 2009 at 9:33 am

My heart is with you. I also get terrible terrible migraines. I totally get you. Wish I could magically make it better for you. You are doing amazing things!

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Tess September 3, 2009 at 9:36 am

I would be beyond angry if it was happening to me. And your post reminds me (not for the first time!) how unimportant my own occasional aches and pains are – because they are occasional.

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Kel September 3, 2009 at 10:20 am

until one has walked a mile in the moccasins of chronic pain, one has no idea

i found an old journal the other day, kept back when I had to return from a missionary stint overseas due to excruciating pain (in a country with no treatment providers) and my sister-in-law said to me it was just a ‘habit’ and I should let it go now – geez, no wonder our relationship struggles!?!

rachelle, you are allowed to be angry
because life should not be lived this way
whatever happened to the ‘abundant life’ that was promised?

may you get a glimpse of it this week
and an ever expanding outpouring of the abundant life until it becomes your true reality

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Jo September 3, 2009 at 10:20 am

Here, lean on this distant shoulder and be as angry as you need to be. I understand.

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Els September 3, 2009 at 11:16 am

Dear Rachelle,

I am so sorry to here you are in pain again. I feel for you!!! I get the feeling you would like to do soooo much and because of this horror pain you can’t. But let me tell you this!! I don’t know you very well but over a periode of time i have been reading stuff of you!! I have to say you are very beautifull!! You inspire me and a lot of other people with YOUR way of writing and your honesty and creativity. You show your inner beauty even though at the moment it doesn’t feel like that at all!! But you do!! Thanks for being You and the courage to write these things down!!

Warm greetings Els

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Sue September 3, 2009 at 1:47 pm

Hi Rachelle,

I TOTALLY understand where you are coming from. I went through it myself with CFS for 6+ years. So easy for people to slip the knife in and twist without even REALISING it.

I’m sorry you are feeling worse. I’m sorry there are not giant pools of validation waiting for you at every turn. I could never really explain to people, except those who were suffering in the same experience, how horribly lonely it is and how INFURIATING it is that people don’t get it.

Some of us get it, Rachelle!!! Glad you wrote about it.

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Kristi September 3, 2009 at 1:55 pm

Rachelle –

I know I don’t fully appreciate what you have written — not because I don’t want to but because it is too much pain for me to comprehend — but inspite of my limitation, please know I am sending warm thoughts from across the world.

Strength to you today.
–k

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Rachelle Mee-Chapman September 3, 2009 at 2:15 pm

Thanks Sue. And I should say, my friend I talked to yesterday also dished out HUGE platters of validation. I just got double whammied by a family member who never gets it — the two converstaions rolling one after the other.

I have to admit, one of our former babysitters had Fibromialgia, and I totally did not get it. Now I wish I could rewind and be a better support system to her.

Onward!

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Sandy September 3, 2009 at 2:40 pm

Rachelle,

I just wanted to tell you how inspiring you are to me. Your beauty and honesty shines through in everything that you write and I am constantly in awe of all that you do despite your chronic pain. I totally understand how 1 comment from a family member can bring you down – hope these comments from friends will help to bring you back up again.

Please know that there are people out there that support you and send healing thoughts your way.

Sandy

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Christine "Blisschick" Reed September 3, 2009 at 3:25 pm

Oh, yeah, you are totally seen and heard, Rachelle. There ARE so MANY of us (too many) who get this.

This, I think, is a lot of the whole “picking your perfect posse.” This year’s biggest lesson for me: weed out the WEEDY “friends.” You know what I mean, I’m sure.

I used to have migraines so regularly that I know precisely what you mean about not trusting your body. I got rid of them. I am thankful for that. I should say, I got rid of that “type” because classic migraines are never actually gone; they morph.

Anyway, now I am the lucky owner of a body wracked with fibro. In the back and ribs which radiates everywhere. I push through because I’m stubborn.

BUT I ONLY FEEL GOOD when I am working out really hard. I CANNOT do that 24/7, ya know? So for about 1.5 hours a day, I feel like my body likes me. The rest of the time, we are at odds, to say the least.

So, like I said, you are heard and seen and never doubt that.

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rowena September 3, 2009 at 3:28 pm

I had a milld case of the flu this week, and I thought, as I tried to go about my day taking care of children and other things, how do people do this on a daily basis knowing that they won’t get better in a couple of days? All I wanted to do was feel sorry for myself and lay down.

But I mentioned on twitter about owning the upset and letting it go. This is something that I am only now discovering. I have had a lot of loss and dissappointment and resentment in the last few years and just holding onto it, or resisting it, or trying to figure it out or trying to ignore it is so exhausting and it takes all your focus and energy.

One day, I lay in bad and told myself I was just going to feel it. I wasn’t going to try to analyze or fix or get rid of it. Just allow myself to feel the bad things without guilt or judgement. I had a big cry, but not as big as I had expected. I had to keep myself from “figuring it out” and just accept it. And then I went to sleep.

And the next morning I woke up, and I felt good. I wasn’t thinking about the night before, I just felt good. And that was the day I really started painting again. Every day. It was as if a damn broke and my resisitance to my pain disappeared and that resistance to pain had also been holding back all the good things. Happiness, creativity, energy, hope. I don’t do this very often, I don’t know why, but each time I do it feels very significant.

Well that’s the longer version of my twitter story.

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april September 3, 2009 at 5:24 pm

Rachelle, even in the distant way I have known you for the past few years I have felt like it’s been such a roller coaster with your pain management issues — all the way back to when Eden “healed” you… I can’t believe you’re still dealing with it as bad or worse as it has been all along. It’s just cruel.

I’m sorry. I have no idea how you deal with it. I totally couldn’t.

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Heather September 3, 2009 at 5:53 pm

Blessings for your health

May you find peace from the pain
May you find rest and quiet
May you have strenth for what needs to be done and forgiveness for yourself for what doesn’t
May you remember to be gentle with yourself
May you know that there are loving shoulders waiting to be leaned on
May you be free of resentment for the people who just don’t get it
May you be surrounded by people who do

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Roxanne September 3, 2009 at 8:58 pm

It’s certainly none of my business … but one does recognize oneself, and this prompts me to ask ~ do you have MS? I’ve suffered terrible, extreme fatigue (particularly on very hot days), muscle-weakness (i.e. jello legs that make me fall sometimes) and ugly pain in my back and hip and when I walk. I strongly suspect MS, for more reasons than what I’ve mentioned here.

Yes, unfortunately, such physical limitations or challenge’s aren’t easily seen by others, who might be inclined to tell us to buck up and ‘get on with things,’ or to ‘stop the broken wing syndrome’.

Well, as far as I’m concerned, the family member who says this can piss off.

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Cindy September 3, 2009 at 10:13 pm

holding you in the light today . . .

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Anj September 3, 2009 at 10:50 pm

One of my new mantras is “Chronic pain sucks and that is not whinging, it is living in reality.”

Chronic pain does suck, and I am sorry that it is a part of your life.

Good on you for writing a list of what you choose to do daily, in spite of the pain, to have a life.

There is that very real part of me that says, internally, *uck those who can not understand and choose not to listen enough to get to where they can.

In my next life, I want to be a fairy godmother with a magic wand and then I would wave it over your head and clear the pain.

For now, I’ll just spend a little bit of time holding you in the Light

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Rachelle September 4, 2009 at 2:45 pm

Thank you all for such supportive and understanding thoughts. I often wonder if I whine to much on my blog. But I want to be honest here, and so there you have it.

Thank you Rowena for your help with figuring out what to do with sorrow. After two days of tearyness I feel a bit more peaceful I appreciate your thought here, and on Twitter. They have sustained me.

Sandy and Heather thank you for your comments here. They rang out especially loud and clear.

And to Cindy and Elys and everyone else who commented…thank you from the bottom of my tender hear.t I totally appreciate you!

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Stacey September 4, 2009 at 10:20 pm

I’ve been lurking for a bit, but felt I needed to give you a word today. As a fellow sufferer of almost chronic migraines, I “get” it. In fact, hid in my basement cave yesterday due to the sound and smell issues that accompanied the light and the pain ones. Some days I simply cannot function, no matter how hard I struggle, so I applaud you for getting through. I’m sending up prayers for your comfort and healing, hopes for your art and writing, and well wishes all around. May you be released soon.

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Lynette September 5, 2009 at 2:53 am

One of my memories of chronic pain: One night I was holding my son in the middle of the night, after at least 2 years of holding him at night while he cries in pain from chronic ear infections. It is about 3 am and I’ve been walking him for about an hour and a half, listening to him cry his pain-cry. I am standing by our front window and suddenly I realize that this is more than I can bear, and I crumple with him in my arms, and weep, and stop being strong for him, and just give up. A few minutes later, I get up, knowing that I have given up. My new way of being was that I’d hit a wall, and that the old phrase “God won’t give us more than we can bear” is actually a lie. Because it was more than I could bear. And yet I kept going. And I guess there is some kind of beauty in the keeping on…

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Kathleen November 10, 2011 at 2:18 am

I can so totally relate. I often wonder if anyone realises how hard it is to get ready for work or just going out. You are right it is a herculean effort to get ready. Some days it can take over an hour. And then everyone says how good I look and I must be getting better. They have no idea how freaking hard it is to get out the door when ALL I want to do is lie flat on my back in bed and be pain free.
Thank you for your post. It’s nice to know I am not alone.

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