Sunday, October 4, 2015

Life on Mars

I'm going to tell you something: for the first time in seven years I have no idea how to do this. I've wandered into alien territory, the isolated, wizened, unrecognizable, sun-deviled, starless landscape of chronic pain. It's like Mars here. I'd rather be on Earth.

BUMMER. It's all I got right now! Those two words- Chronic and Pain, are two of the most dismal words imaginable, and who gets psyched up about going over for a potluck at The Dismals? Nobody!

When my good friends go through bad times- and I mean bad times, periods of life when the nobility of the soul is put through the spin cycle- I always give them the same sing-song advice: take notes. I give them other advice too, although I'm learning (in tiny increments) that the best thing to do, always, is to hold off on the advice and just listen- attentively and without interruption- until advice is explicitly sought. (When trying to achieve this, I try to picture myself as nothing but an enormous human ear on the end of the phone line, or settled into the cafe chair or perched on a bar stool. I find the visual helpful.)

Take notes I say! One day soon, although you can't see it and can barely dream of it, such is the nature of the beast, you'll be out of this. You'll feel better, and your experience miring through this damp, black tunnel will be of great service to you and to those around you.  Once you've been through the tunnel, and you are familiar with its peculiar and convoluted layout, then you'll be able to run back in and grab others when they need to be rescued.

I took my own advice. "Be your own hero!" Dave told me once, as a joke, when I was very upset that my sandwich from Earthfare had been made without mayo, despite my specific request. "You march in there," he said, holding me by the shoulders, "and you GET that MAYO!"

So I was my own hero, and I took some notes. Here Is What It Feels Like To Be Diagnosed With a Disease or Chronic Pain. I scrawled it across the page, like a sixth grader diligently responding to a writing prompt in Language Arts class.

And let me tell you, ain't nobody want to be reading that. Not me, not you, not anyone.

NOT TAKING FIELD NOTES ON THIS MISSION, I said to myself the next morning as I buried the papers in the recycling bin. But a few hours later, after a walk and one of those Trader Joe's free coffee samples, which I'm allowing myself daily to get my brain up and running again, I felt like I ought to give it another go, this time here on the blog. Write Everything being my (currently very shaky) philosophy. Besides, writing on the blog forces me to be more articulate and purposeful in how I express myself, and so I dug up the papers and tried to drain some of the copious amounts of self-pity out of the words.

Didn't work. So I started over and wrote something super! poppy! Everybody get on the bus we're going for a ride and I brought individual fruit cups for us all!

Needless to say, that was terrible.

I cannot sugar coat my experience thus far in the agonizing world of chronic pain. Even if I could, that would be a huge disservice to the millions of other people here on Mars, the ones that I can't see, but they're with me all the same. Nor have I learned how to artfully express my time here without melodrama or what feels like dismal and purposeless complaint. Seven years into this blog and for the first time, I honestly don't know in which direction to move.

I need a map. I will find myself a map.

I will say though, the 99 tips that you left in the previous post on how to cheer up and take care of yourself when all else fails, reading those felt like somebody had illuminated a string of christmas lights inside the tunnel.  It was as if all of you set up an aid station on this planet, with Gatorade and a stack of nice books to look at. Thank you, it's been enjoyable.

People with chronic pain often are forced to live minute by minute. That's what I've had to do these last few weeks, but by jumping from comment to comment and using them as direct medical directives, your tips have helped me fashion together bright and elaborate sequences of good minutes- even good hours and good afternoons have flown by (By the way, as a group, we really love podcast and drinking hot liquids.)

So, for my thank you, here is this week's Mystery Prize Winner:

Blogger Jamie said...
I am over halfway done my accelerated nursing program and have experienced a wide range of emotions since its start - hopelessness, anxiety, stress, stress, stress, excitement, wonder, etc. One thing that is stressed throughout our education is self care and taking time for ourselves. I have found that beyond exercise, sleep and healthy eating, I try and watch a funny TV show when I'm feeling especially low. Some of my favorites are the Mindy Project, and especially Friends! Anything that makes me laugh out loud by myself usually does the trick!

September 29, 2015 at 5:03 PM
Jamie, taking your advice led to one sublime hour of Friends, season 3, episodes 6, 7 & 8. Thank you for that! Congratulations on being halfway through the ABSN program, which I hear is itself a bit of a dark tunnel at times. Please email and we'll get you all sorted. 

Thank you for commenting, everyone. I love you and I sure needed you this week. See you back here soon.



Anonymous said...

Don't know what to say, other than I'm reading, wherever you take us, fruit cup or no ;)

Lauren Flynn said...

I'm so sorry that you have to go through that. I look at your blog almost every day in hopes of a new post. I'm so happy you're writing regularly again. I've been reading this blog since I first decided I wanted to be a foster/adoptive mother. These next couple of months are the last in what seems like an endless process to get certified to be a mom, and sometimes it's really hard. I know you understand how hard it is to wait for something you want very badly. Your posts have pulled me out of many a sad reverie. Thank you!

Casey Toby said...

I hear you so hard on the chronic pain-I've been really struggling with my diagnosis and subsequent dealings with fibromyalgia over the last few years. Some days are better than others; and it's the good days that keep me going on the muscle relaxer days. Tea and essential oils help (lavender in particular).

Sarah P said...

This post is an excellent reminder for me to wake up. There are dear, dear friends of mine who I know on the surface are struggling with a health problem, but I take it for granite just how hard it might be to have to deal with it every moment of every day. A quick text or a coffee every few weeks is NOT enough. I need to show up at their house with a box of DVDs, bring them fresh flowers for no reason, just prove to them that I'm there. Even though I cannot fully comprehend, I am there. Thank you for the reminder. Fresh flowers for you, sweet girl.

Melina said...

@Casey Toby. I've been reading your comments for years. HAad you christmas card on my fridge. and I had no idea you struggled with fibromyalgia. Fibro goes hand and with IC. My specialist and I are trying to figure out whether i have that, too. Could you email me sometime? thewildercoast@gmail. I'd love to check in personally about how yor'e doing and what tips you can give me! be well!

Melina said...

Lauren, I don't know what to say. comments like yours are why I still write the blog.
i applaud your perseverance and your patience and I'd love to know how it works out. email me sometime and fill me in.

Melina said...

Sarah P

Thank you. I wonder whose house I will show at randomly tomorrow and bring her a bright yellow trader joes mum, just because. Well, just because she takes care of me all the time, so now I'd like to take care of her . Her name is Kelli.

jennt said...

keep writing! I'm a big ear!

Anonymous said...

Seriously watch the mindy project. It is the funniest show on tv. I laugh out loud all the time. Season one is on Netflix.

Scobel Wiggins said...

thinking of you

Melina said...

JennT, I love that. Here's to big ears! (almost wrote Hear's to big ears, now that would have been punny!)

Tage said...

I opted to get all of the comments from the previous blog sent to my email and I know they were all meant for you but holy cow did they go a loooong way in cheering me up and giving me some hope/bright spot every time a new one came in. My favorite was from Sri who makes up projects with official sounding names. Bedrest makes it impossible for me to participate in most of the suggestions everyone else gave but I will definitely be doing "Project Kick Bedrest's Ass" in full force over the next 6 weeks. Thanks for asking this question, Melina, and thanks for such a funny answer, Sri. I know I wasn't the intended target but it's really made a difference to me.

Megan said...

Hi Melina. I keep checking in, hoping that you've posted again and are doing better. I read up about what you have, and I am so awfully sorry that you are going through this. I'm not really sure what else to say, except that you have at least one person in South Africa rooting for you, and hoping with all her heart that things start looking up for you soon.

Take care.