Category: Chronic Fatigue Syndrome

How to be Sick.

Published on by Mary Gelpi25 Comments

Merry Sickmas!

I was going to write Mary Sickmas, but sometimes an abundance of puns can be off putting if you know what I’m saying. Anyway, Merry Christmas! I am a little late. It’s been a chaotic week, and as I sit here writing this the chaos ensues. My brothers and sister and their significant others are currently on a search for the best Sazerac in New Orleans. (The official Nola Drink) This means that when we all meet up for dinner later everyone should be good and loaded and the meal should go nicely. I wanted to go on the hunt with them but my legs were starting to give up after breakfast so I took the old lady bus home. OK it wasn’t a bus. It was just a car with my 82 year old grandma and my mom, who weren’t in the mood to walk down Bourbon Street in search of alcohol. Maybe by 2012 my mom and I will be well enough for those types of adventures. Maybe even Grandma, too.

This year we did something a little different. Since our humble home can’t house all the DAMN KIDS comfortably and their significant others and my grandma AND Monty, the siblings rented a house on St. Charles Avenue for us all to crash in. It’s a beautiful house, built in the 1800’s with all the modern renovations you find in those interior decorating magazines. It’s nice. The street car passes in front of the dining room window. And every time it does my brother Nick raises his arms in the air and yells “STREEET CARRR!!” Somehow he hasn’t grown tired of doing it yet.

It’s been a really great Christmas mainly because all four siblings are in Nola to celebrate it. But the icing on the cake is that my grandma was able to make the trip down South from Colorado. She’s kind of a hot commodity in the family being that she has six kids, 15 grandkids, and I don’t know how many great-grandkids. I lost count. Her name is Mary too, and she is someone I really look up to for a variety of reasons. Namely, her optimism–which is something increasingly hard to find and at the same time it’s totally contagious. You find yourself smiling more at simple things when you’re with her, or taking note of scenes that typically you’d never stop to consider. If I were going to give her an award, it would be “The Most Pleasant Person on the Planet Award” because that’s what she is. Undoubtedly. On the way to dinner on Christmas Eve I asked what she wanted for Christmas this year. She closed her eyes and thought a moment and then said “Ya know, I can’t think of a thing. I have a perfectly happy life!” And she wasn’t just being sentimental. She says outrageously kind and positive things like this all of the time. I don’t think it strikes her that that type of thinking is rare. She’s always been that way.

Grandma Bell. She's wearing a nightie made in the 50's. No joke.

I loved her response though. How many times I am asked what I would change about my life, what I want, what I don’t want, and ideas fly out of my mouth like a verbal bulleted list. As though I’d been rehearsing what other life I may want. When asked what people want, whether it be for Christmas or just in life, seldom do people say “I don’t want anything.” And if they do say it, it often means “I definitely want SOMETHING, but I’m going to say I want nothing. But if you get me nothing, there will be Hell to pay!” I’ve been thinking about what being content really means. For so long after getting sick and losing so many things, I’d play over and over what I had lost, what it had cost me, what I wasn’t doing, where I wasn’t going. Like a rolladex of veritable “If only’s” the cycle would start, and that type of thinking is bad news. It’s also really hard to stop. It sortof self-propels itself. More recently I’ve been realizing that the idea of happiness is so much more simple than I pretend. It doesn’t have to be some far off dream. There are plenty of sick people who are happy. Plenty of poor people, plenty of people working mediocre jobs, and plenty of people who have lost in some way who are happy. That says to me: happiness is already available. The question is, are you accessing it? I don’t think this is an easy process. And I think I had to experience the pain and grief of the things I have lost this year. But at some point, the focus has to change, my energy has to change, and inevitably, I will change. Only I can do this, nobody can do it for me.

Sometimes I think the way to handle a big tragedy is the way in which you handle a small tragedy. For instance, when my grandma spilled some of her drink on her shirt at dinner, she said “Oh Fiddle Faddle!” Then she wiped it up, asked for another drink, and continued the conversation. It’s funny that sometimes even small episodes like this can ruin a dinner or a night just as much as locking yourself outside or finding out you have cancer! Obviously the consequence of one is more detrimental than the consequence of the other, and yet the way humans react to things, it’s hard to know sometimes whether someone spilled their drink or someone has died.

Last night as I went to sleep my thoughts took a noticeable shift. For so long I go to sleep thinking how to get better how to get better how to get better because the thinking is that when I am better is when I will be happy. But last night these words occurred to me: How to be sick. If I learn to master being sick, I can find happiness now, I don’t have to wait for it. It doesn’t have to be conditional. Of course I will continue to try to get better, to keep up with everything the doctors say, and make healthy decisions. But I don’t need to rely so heavily on potential change in order for me to start rocking right now. I think my grandma has encouraged this type of thinking, so I am very grateful she was here to spread some of her magic on us and New Orleans this Christmas. That lesson made a great gift.

Health, Happiness, and Merry Sickmas!

**Excuse the Dr. Phil tone of this post. I’ve been watching a lot of Oprah.

For the Love of Dog.

Published on by Mary Gelpi45 Comments

There are few people so understanding, so unconditionally loving, so uncalculated, forgiving, accepting, and such masters of the moment as are dogs. This is why my best friend is not a human, it’s Monty.

The last week has been a rough one for me physically. After the thrill of that post going viral, the prospect of new possibilities, and two anatomy finals, my body finally caught up, and crashed. The night of my last final I crawled onto the couch feeling a little dizzy and a little shaky. I spent the next three days there. I’ve been sleeping 14 hours a night and still waking up exhausted, feeling easily that I could sleep 14 more. Through the roller coaster of emotional highs and physical lows, there has been one constant, and that has been Monty. The day the blog went viral, we danced in the kitchen in a circle. His paws on my hips, I was laughing with excitement, and he was just along for the ride. I remember thinking, ‘He has no idea why suddenly I am dancing and my parents are opening champagne’ and yet he danced anyway. We were happy, so he was happy. If that’s not a lesson for human beings I don’t know what is.

After a couple of days of dancing and laughing came the inevitable crash. Finishing my final on Monday evening, I fell asleep that night at 8 pm. I woke up on Tuesday around 11. I was dizzy, heavy, and weighed down. Monty woke up slowly with me and I took him on our morning walk. Half way around the block I was feeling that inescapable fatigue crawl over me, and I knew all I’d be able to do that day was lay down. I whistled to Monty and we started back home. We’d only walked maybe a block, but it was enough for him to do his business and mark his territory on four different plants. Once inside I ker-plopped onto the couch and he followed. He laid his head on my legs and we slept another few hours. It was like he knew that’d be the extent of our physical activity that day, and he was OK with that. A dogs intuition is nothing short of amazing.

The rest of the week including today, has been a lot of sleeping and not as much fetch and tug-of-war as he deserves. And yet he seems happy. It’s as though whatever the moment throws at us, he embraces. Tired? We sleep. Energized? We play. Hungry? We eat. Happy? We dance. And there is no remembering or holding onto anything, and there is no anxiety or worry about tomorrow. There is just, this. And he does this, so incredibly well.

Sometimes when I lay awake at night thinking about what the answer to life is, this is what pops into my mind: Pupppies! It makes me laugh. But have you ever played with a puppy and not smiled? It’s impossible. Continuing on, even as I write this, Monty is curled up next to me on the couch, quietly breathing. We woke up two hours ago. He isn’t mad that we aren’t going to the park today, even though that was the plan. Sometimes on sick days I just lay petting him, watching his belly go up and down, and I feel at ease. That is what he seems all the time–at ease–and isn’t that how our life should be? When we’re at ease, we are open to good things. Once we tense up, we close ourselves off.

Anyway, I dedicate this to Monty, and best friends everywhere. I often wonder what humans would be like if we were more like our canine counterparts. Not in the sense that we would sniff each others butts, but what life would be like if we became masters of the moment. If we lived without ego. All of us. That sounds like a nice place to be.

I’ll end this with some tribute pictures of Monty..aka The Monster!

Arph and Arph and Arph Arph Arph! (get it? that was monty doing the sign off…you get it..)

lap dog.
kiss for monty.
kiss for me.
throw the ball. throw it!
mm hmm.

 

 

 

Thanks, I’ll try that.

Published on by Mary Gelpi68 Comments

A story.

After working a couple of months full-time at the Art Gallery, I started calling in sick more and more frequently. I dreaded making the call. I dreaded hearing my bosses voice after I would have to, yet again, say I’d be late or not in at all. I was really lucky to have the boss I did because for all the times I was late and absent, he remained pretty understanding and encouraging. But he was only one guy. I worked in a gallery with 40 other people.

There are some inevitable things you’ll confront with this illness. And from the emails I’ve been reading recently, it isn’t just this illness. It’s all kinds of autoimmune diseases and beyond. The first inevitable thing you’ll confront: people who don’t believe you. I always wondered why that was. Why would I make up the stupidest sounding disease I have ever heard of? Chronic Fatigue Syndrome? Why don’t they just call it Tired-Lazy-Person-Disease. Anyway, I know people call-in sick when in actuality, they aren’t. That’s occurred since the 40 hour work week began, I imagine. The last 6 months of my job were more me faking healthy than sick. I was sick everyday. It was just a matter of, was I not too sick to be able to get through the 8 hours. Having a boss who believed me was a blessing. Unfortunately, the rest of the office…wasn’t  so sure. If I really think about it, I can’t totally blame them for their skepticism. Some young newby walks in the office with optimism in her eyes and excitement about having her own office supplies..then slowly…surely…shows up less…and less…and less. I knew the things they’d say when I called in. I heard what they would call me when I wasn’t there. I walked into enough rooms with that sense hanging in the air…that tangible feeling that you were the topic of discussion, and it wasn’t about how great you are! Some of them just looked at me with plain anger, which was hard for me to swallow. But I knew what they thought at the root of it: that it wasn’t fair. I got to miss all this work while they got their asses to the gallery everyday and on time. Everyone is tired, that’s no excuse. If they only knew how unfair it really was. I would’ve gladly traded with any of them. I always said that, but no one believed me.

The next thing you’re going to confront: advice. Sweet, unsolicited, unknowledgeable advice. And here’s how it will go. Have you tried acupuncture? Have you tried rolfing? You need to try acupressure. You need to re-set your bodies internal clock. You should do yoga, at least 3 times a week. You should work out, hard, every day. You need to drink more water! Have you ever considered going gluten-free? Dude, it’s probably the mold. You should avoid dairy, that’s what my mom did and now she’s all better! You’re eating too much salt. You just need to push through it. Massage therapy! Chiropractor! Holistic medicine! You should stop taking every pill you’re taking, cold turkey. I’d bet you’d feel better. Go running! Go to a psychiatrist! Go to India! I heard this thing about acai berries… Have you tried talking to God about it? You may dabble in Buddhism..that did a lot for me. I’m sure it’s nothing a little exercise couldn’t cure! If you just spent 2 weeks with me, I’d have you fixed in no time. Stop drinking coffee! Stop eating meat! Stop eating and drinking! Don’t sleep so much! Have you ever gotten your cavities filled? Ah, it’s your fillings then, they’re leaking toxic chemicals into your blood. You should try taking magnesium, you’ll feel better! I have something called Tylenol, will that help? 

And those are just a few..I could go on. Also, those are all real pieces of actual advice I’ve been given. And I’ve become pretty well-versed at receiving advice that I don’t want. And the response is this: Thanks, I’ll try that! The reason I say that is because, for me, I was tired of spending hours explaining to people that I had already tried pretty much everything, seen 10 doctors, and tried diet changes. People couldn’t understand that exercise made me worse and rest was actually good for me. By the end, you’re just tired. Tired of talking about it, tired of fighting people on it, tired of defending yourself, of convincing people you’re not crazy, you’re not lazy, and you’re not a basket case. By the end I didn’t care. Truthfully people just want to help you, and so they offer advice. And that’s fine. But, would you tell someone with aids to just drink more water? Or someone with cancer to just take more vitamins? Doubtful. Not unheard of, but doubtful. And that is why, it’s just so much easier and less exhausting to say: Thanks, I’ll try that. Smile and nod. Thank them for the advice, and keep moving. They’ll get it or they won’t. But whether they do or not is not what will get you better in the end. It sucks not to be believed. It sucks to be misunderstood. But when your energy level is already such a commodity, it becomes a matter of livelihood. I didn’t have it in me to fight the world anymore, so I let them say what they say and do what they do.

There’s a quote I’ve liked since I was a kid that I would play in my head when the “noise” of the world became too loud. It’s something like this:

No one knows what I am. Only I know what I am. If I were a giraffe, and someone called me a monkey, I’d think, No, actually, I’m a giraffe. “

So it’s not the deepest of quotes, but I enjoy the simplicity of it. And that’s how I started to have to see myself. I needed to stop proving what I was and what I wasn’t, and just be exactly what I was: a sarcastic sick kid trying to get through every day. And many times-failing! Everyone you meet has a story, has their own battle. And we’re all quick to think we know who everyone is, and put them in a box with a nice clean label on it. But inside we all know, it goes much further than that.

I’m sharing this story because I’ve received quite a few emails and responses about the loneliness in being sick, not being believed, and the difficulty in explaining their respective illnesses to people they care about. I am just one person and this is only one experience, but I think this is a big lesson. Allow yourself to be sick. Accept what is. Don’t run from it anymore. Don’t dwell on it either. Just acknowledge what is, and see where the clarity takes you. You’ll be surprised. My final thought is this. After a particularly hard day, a few days after I had lost my job and realized I would have to give up my apartment, I was angry. I was really sad but also really angry. I kept thinking about that word Fair, and how this Wasn’t! I don’t know where they came from, but when I laid down to sleep that night, these words came over me: You were trusted with this illness. And that, among all the health advice I’d ever received, made me feel better.

Health, Happiness, and Thanks! I’ll try that.

But chances are..I already have. :)

Writing Poems

Published on by Mary Gelpi14 Comments

Today has been a nice day all around besides only sleeping a couple hours last night. I have an incredibly hard A&P LAB final tomorrow, a test that we should have been studying for over the last two weeks, and I’ve devoted maybe an hour to. It’s very hard to focus on that class right now. I feel I’ve been spoken to, and it’s leading me down a road that does not require Anatomy and Physiology.

I spent the last few hours importing some new poetry I wrote while in NYC in the Spring. I took out my books, but I couldn’t stop thinking of some of these poems, so I put them down.

I feel more connected to the world than I ever have before. It both scares me and excites me. But in the back of my mind, in the spot that often is the only thing telling you the truth, I feel that this is going to be a good thing…whatever this turns out to be. In the meantime, I can’t stop thinking of these lines by e.e. cummings. I wrote them in my notebook in the spring.

“May I Be I is the only prayer-

Not may I be great or good or beautiful or strong.”

Soo Let’s Talk About the Weirdest Day of My Life

Published on by Mary Gelpi89 Comments

Yesterday. It was yesterday.

It began like most of my mornings begin. My alarm went off at 7, and I snoozed for two hours and finally sludged out of bed at 9, hating myself because I only had 4 hours to cram for my A&P final when I really needed 6. I took my morning pills, drank 3 cups of coffee, and tried to jam every last bit of information regarding the regions of the brain and internal anatomy of the spinal cord. Dura Mater, Arachnoid Mater, Pia Mater. Yessss I still remember.

Then I made the hour drive to community college and blared the same music I’ve been singing at the top of my lungs on that drive. The Biebs, Gaga, Edward Sharp…you know. I took my test and think I did reasonably well. Which means I got anywhere from an F to an A. Then I made the hour drive back to my parents, blaring the music again and singing really loud.

When I got home I thought, maybe I’ll check on the ol’ blog and see how it’s doing. (Imagine me saying that like an old mid-western man.) I was beyond stunned when I saw that it had 60,000 hits. Beyond. I yelled and my mom came out to see about the ruckus. Then she said “I’ve read about this, I think it’s called ‘going viral.’ ” Then we all had a laugh because the thought of 60,000 people reading a silly observational post I made was just too much.

Then I watched it all unfold literally before my eyes, reading some of the funniest/weirdest comments I’d ever seen. What I could gather by 5:00 is “HOW COULD I FORGET TO PUT UP DUCKFACE” and that somehow this became a conversation about race, which really surprised me. If I would have known putting “white girl” in the title would cause such an upheaval, I would have left it out. Like Oprah says, When ya know better, ya do better. It’s just that my writing–but more importantly my humor– comes from a very real place. And everyday, I scroll through my homepage, and am bombarded with pictures of mostly white girls doing the things on that list. So that’s why I titled it what I did. Simply because that is my experience. What I can gather from the comments now though, is that these are trends from EVERY girl on Facebook, and even some boys too. So there you have it, we’re all idiots. So let’s all take a deep breath. In. And Out. Good.

The rest of the night was like any other. My parents put on Bill O’Reilly at 7. I yelled at the TV and they told me to be quiet. My mom forgot Monty is lactose intolerant and fed him some cheese, so for the next three hours we were all bombarded by the worst gas you can imagine. Monty of course, was unphased. By 8 we checked the numbers and couldn’t believe them. All we could do was laugh out of shock. My step-dad said “The internet…is crazy…” What I loved most is that it made people laugh, and that was all it was meant to do. By 9 my mom was watching the movie “Message in a Bottle” and I was laughing at Kevin Costner looking so serious in a turtle neck. I tried to study for my A&P LAB final which is Monday, but felt brain-dead. So I watched Kevin Costner…in a turtle neck.

turtle neck.

My friend Emily called and said she was excited because now she had a friend that was  a D-list celebrity! Haha, thanks Em. More like Z list.  My friend Colby said “Write about a crippling illness, no one gives a shit. Write about Facebook, the world explodes.” Ain’t it the truth. Anyway, I couldn’t sleep so I read some more out of Marc Nepo’s book. And I’ll leave you all with the last thing I read.

“Those who truly love us will never knowingly ask us to be other than we are.”

Isn’t that beautiful? I thought so too.

Health, Happiness, and DUCKFACE.

15 Things White Girls Love To Do on Facebook

Published on by Mary Gelpi1,818 Comments

1. Take pictures of their feet.

This is what our feet look like!

2. Express their extreme annoyance at this work day and hint that it deserves a much needed alcoholic beverage at the end of it. WINK WINK.

3. Thank their hubby for being the best hubby in the world while their hubby is sitting right next to them.

4. Complain about bad service at a fine dining establishments. “Never eating at Applebee’s AGAIN!”

5. Express their extreme excitement to see their best friends tonight, Britney, Whitney, and Sarah!!! LOVE YOU LADIES!!

6. Take pictures wearing a lot of makeup and looking really preppy while simultaneously making a “hard” facial expression and holding up what they consider to be a gangster sign. Potential caption: ‘Straight thuggin.’

We’re hard!!!

7. Take pictures of undeserving food.

I effing love oatmeal!!! Mmmmmmm.

8. Make their status the song lyrics of any Kings of Leon Song.

9. Take a picture of someone they deem inferior to themselves in some way with the question: Really?

10. Write angry letters to companies (Dear EZ PARK, I hate you!), unorganized groups of people (Dear slutty freshmen who think that leggings can be worn as pants..), and non-entities (Dear unseasonably cold weather, WTF?!)

11. Subtly yell at no one in particular while being very specific. “Wow, it’s hard to believe that you think you know someone and then they turn around and STAB YOU IN THE BACK. Will never make that mistake again. EVER.”

12. Document exceedingly mundane activites for the day. “Getting my oil changed today. Then getting much needed groceries. Then it’s off to the post office to return a package. Then stopping by the gyno. Will probably need some gas by the end, so I may stop at the gas station. But I might be tired so I’ll probably just get it in the morning on my way to pick up a prescription. But if I’m not very tired I’ll probably just get the gas on the way home. Again, unless I am tired.”

13. Express their distaste for facebook on facebook and threaten to leave facebook to their facebook friends.

14. Ask seemingly rhetorical questions. “It’s cool to do a bunch of meth and babysit 20 six year olds, right? Hehe.”

15. Write a status in another language. Parce que, Je suis tres intelligente!!

Love,

Mary. A white girl on facebook, guilty of most of these things.

**My friend Matt Damon (aka Kaitlin) collaborated on the trends of facebook with me. A much more detailed version will be in our book we’re writing. Which will be published….one day…

Lucky, Actually

Published on by Mary Gelpi17 Comments

While it’s a total cliché to “give thanks” today on Thanksgiving, I’ve always found it important to acknowledge and share gratitude. So what better day than today. 2011 has been one of the worst years of my life. So I’ll start by thanking God, for crapping on me this year. Just kidding! I’ve finally begun to understand why what happened this year happened, and I’m starting to accept that I am exactly where I need to be. Would I have chosen this? No. But I have to think that means something greater than me is at work, and I need to embrace that.

One of the biggest thanks I can give this year is to my family, starting with my mom and stepdad. On that awful day in January when I was too weak to walk to the bathroom, my Mom and Marc raced over as soon as I called. They sat with me in the crowded E.R. as I tried to turn my wheelchair into a makeshift bed. Marc took Monty and played on the levee behind the hospital while my mom stayed with me, for the whole 10 hours we were there. Since then, I, at 27, have moved back in with my parents. It’s not exactly ideal but what I finally realized is, Thank God they took me in. I was at a point where I was absolutely unable to care for myself. They basically just “scooted over” and let me climb on board, never making me feel like a burden. That’s love. And that’s something to be grateful for. Two weeks after “the crash”, my sister Amelie flew in from California. She “extreme home makeover’d” my apartment, stocked my pantry and fridge with healthy food, found a massage therapist and bought me 10 sessions, researched homeopathic doctors, and cooked meals for me while she was here. The most beautiful part of that act of kindness was that I didn’t even ask her to do any of it. She did it all on her own. Her ability to anticipate needs and never wait to be asked for help has always impressed me. Since then, over and over people have shown their love and support in different ways. My aunt and grandma sent money to help pay for my doctor in Miami, which doesn’t take insurance. (Not that I have insurance anymore anyway. Because why would they give insurance to a sick person who actually needs it? Oh wait…) My brother and sister-in-law let me crash on their couch in New York City for a month and lay around and write. I became their self-appointed sick, adopted child. That was kewl. Gabe let me live at his house in Nola for free while taking classes in the city. Kaitlin gave me a bag of the movies we find funniest to cheer me up while in a sickly depression. In big and small ways, a lot of people stepped in. I’m lucky.

There is plenty to be grateful for, even in the midst of hardship. In fact sometimes it is in those dark times that we are able to see real reason for gratitude that perhaps we’d skipped over before. Truthfully this year has kicked my ass, beginning literally on January 1st. Upon losing my health, I lost my job, a relationship, my apartment, and perhaps most painfully, my independence. But what I have begun to gain is perspective. A reason to dig deeper, wade through the crap, and find purpose. I’ve got a long way to go. A long way.  But I’ve got a roof over my head, food on the table, and the priceless gift of unconditional love. That means I’m not alone at the end of the day. And that’s what I’m most grateful for.

Health and Happiness and Happy T-giving!

Old Man With Grocery Bags

Published on by Mary Gelpi4 Comments

One of my favorite sights to see is that of an old man or woman walking down the street with grocery bags. I can’t explain it, but I love when I see this sight. I see it in New Orleans more than seldom and like the weirdo I am, I stop and stare. Watch them for as long as I can. It’s such a sight to see. Something about it makes me feel connected. Like I know who they are or they know who I am and I think about how small my presence in the world is. I wonder what it is about that image that gets me. But I’ve always loved it.

A couple of days ago I was riding my bike with Monty. The local grocery store Conseco’s is only a few blocks away, so to get a little exercise I ride my bike there and get groceries for the day. When I arrived back at the house I got off my bike and was unleashing Monty when I caught something out of the corner of my eye. There he was. An old, old, old man, a grocery bag dangling at either side, walking with a limp down the sidewalk. I froze. He didn’t look at me, he looked off, like he wasn’t looking at anything in particular. Almost like he didn’t even know where he was going. I stared. Monty stared. I  felt all of the city noise stop, there was stillness as he wobbled by. It gave me that feeling again. Calm, connected. I almost wanted to take his picture but I thought that might be perverted, or worse, make him mad. I watched him until he turned left and looked back at Monty who I felt was thinking “My owner is a creeper.”

Anyway I went in and wrote about that man I saw but I don’t think it’s where I want it yet. Sometimes I feel I could write a whole book about an old man or an old lady carring grocery bags down the street. It’s funny the things that stick with us, inspire us. I’m sure one day I’ll be the old lady, teetering with my bags. A girl can dream.

Heaven.

Published on by Mary Gelpi9 Comments

You know what I wonder about lately? What talk show hosts talk to their guests about when they cut to a commercial. Because they always lean in as the camera zooms out, and I’m wondering, what are they saying? “Dude, you bombed.” Or is it more cordial? “Thanks again for coming on my show blah blah blah.” Watch the next moment on a talk show before the break. It’s just one of those things I think about. I also think about this: What makes a good person? A few weeks ago a girl told me I didn’t need to worry about getting into heaven, “Because you’re hilarious!” she said. I found it odd because I don’t think a sense of humor exactly is your ticket in. I’m sure there are murderers out there who can tell great jokes. I’m also wondering what Heaven consists of. I used to think it was a white puffy place where you just hung out and reunited with all the dead people from your past. But I’m starting to think it’s not such an “entity” that you get into.

My beliefs have been reconstructing themselves this year. As a child I thought that following the Golden Rule and loving unconditionally got you in, among other things like Church on Sundays and not banging until you get married. I guess I still think that to some effect, but my concept of Heaven and how you get there has changed. I think what happens after you die is an evolution of your soul. But you can only evolve once you’ve learned and grasped whatever is necessary here on earth. My mom explained one theory to me that says the reason for humans to exist is to bring God into higher consciousness. And I can believe that. Sometimes I think, that guy who everyone says knows what he’s doing, DOESN’T SEEM TO KNOW WHAT HE’S DOING! Maybe when we struggle and then overcome, our achievement becomes that of the entire Universes. Our lessons are God’s lessons.

I just think you’ve got to get it before you move on. I don’t know what the lesson is specifically, in fact I’m sure there is more than one, but I know you can’t evolve until you’ve understood what you were sent here to. Maybe it’s different for everyone. I don’t know if I’m conveying properly how I feel, because maybe I don’t even understand it myself. And I don’t pretend to. I just know that when I watch people like “The Real House Wives” or “Toddlers and Tiaras” or  Rick Perry, I think to myself, they don’t get it. I can’t exactly place my finger on what it is, I just feel intuitively that some people get it and other people don’t. And the one’s who do will move on to something greater, the ones who don’t will take another lap around the track. That’s the thing about the universe, it will deal you the same set of cards until you learn how to play them properly. This year has dealt me some tough cards, so I hope I played them right and get a better hand in 2012. I’m sleepy  now.

Health, Happiness, Heaven.

Something Else.

Published on by Mary Gelpi7 Comments

I think I had a bit of an epiphany over the weekend. I went camping on a beach with some crazy people I know. It was great. Suddenly though, I don’t want to talk about being sick anymore. I don’t know that typing out everyday that I have a migraine and I’m really fatigued and all of my muscles hurt, is helping. In the beginning I started this out with some encouragement from a few different people that I should do it, and it might help other people. And if it even helps one person, then it’s worth it. But I think there is something more important at work here. I think the goal should be to show that you can have a stupid illness like that, and still have a happy life. A productive life. Sometimes people read what I write and tell me it’s really depressing. And I think, depressing for you? I’M the 27-year-old living on my parents couch! But the whole truth is, it could be way worse. I’ve got two feet, two arms, half a brain, and a sense of humor that seems to carry me through the toughest situations. I get that from my dad.

Anyway I’m not sure what direction this is going to go in. I’ll still give reports on how I’m doing though it’s hard to think that anyone reading this cares whether my migraine cycle stopped or how many pills a day I’m up to, or down to. The illness is a part of me, and something that happened to me, but it is not who I am. And I feel called to write about bigger things and do bigger things, even though at times that seems impossible. But I’ve come a long way already. It was just in January that I would dread walking to the bathroom, because it fatigued me so much. I still have a ways to go, but for the first time in a very, very long time, I feel like I am going to recover enough to do big things. Only the universe knows what’s in store, but I am anxious to see what lies ahead.

So no more elaborating about what I feel like. From now on, just assume I have a migraine and I’m fatigued. That way I won’t have to write it everyday. What I’m saying is, great health or bad health, I’m going to keep looking for the reason I am here and why I have a passion for writing. I have a feeling it’s not just to write a blog about being sick. That seems to diminish what I consider a gift that was given to me. I don’t mean to un-substantiate the seriousness or shittiness of this illness, because it is both. And everyone I talk to with it fights a battle everyday. I know the exhaustion of just explaining it. But I want the illness just to be in the background of what I’m doing. I don’t want it to have center stage. I want to show that life can still have meaning and importance, even if you’re stuck in bed. It may have been the reason I started this, but it won’t be why I continue. It’s time for something else.

My Liver

Published on by Mary Gelpi4 Comments

I’ve been thinking a lot about my liver. It’s like, 25 pills a day…my liver must be in overdrive processing all the crap I swallow. But in my anatomy class I was looking at the liver on the model that shows all the organs, and it’s huge! Like much bigger than I thought. I always assumed it’d look like a spleen or kidney or something, but no, it stretches from your right hypochondriac region to your epigastric region. That’s two whole regions! None of the other organs take up that much space. Well the intestines take up a lot, but you get it. Big organ the liver is. And I really hope it will be functioning by the time I am 50 but I often worry it won’t. Can you get liver transplants? I’ll ask my lab teacher.

I had another dream I was dying last night. Well first I had a dream I was looking at a horse and the horse’s head was on fire. It was really creepy. I even consciously thought “I’ll need to tell my mom about this.” Then it transitioned into me being attached to a parachute that wasn’t functioning properly. I kept thinking I was going to crash and burn and die but I didn’t. I would land OK. And then again, whisked up into the air, clenching my teeth and waiting to crash. Pretty stressful. The last part of the dream I was in a car with my dad and someone else that I can’t place. Again the car was attached to the parachute and being thrown all over the place. Only this time, I was calm. I closed my eyes and my thinking was this: It’s fine. If I die and there is no afterlife, then this is the end and I won’t have consciousness to suffer. If there is an afterlife I’ll get to see a bunch of people I miss and probably bounce around on some awesome cumulonimbus clouds. I always imagine Heaven to be filled with pink cumulonimbus clouds. Anyway it was the first time in my stressful dreams that I had attained composure and a feeling of calm before death, which rarely happens in those dreams, so I’ll consider that a win. Score.

I’ve been feeling crappy but functionally crappy for the last week. If I can get myself out of bed, take my meds, drink 3 cups of coffee, I am usually feeling alive about an hour later. It’s that first hour that is tough to push through. Monty usually helps with that because he gets anxious to go out and if I don’t get up he eventually paws me in the face until I start moving. He’s my best motivator, really. I still worry if I’m on the right track. I am working up to go to nursing school but when I talk to people in the program, they work very long hours and study very long hours. I just wonder if I will be able to handle it. But, I’m going to keep trying. Maybe I’ll just be a nursing student for like 4 or 5 years if that’s how long it takes. But I won’t sit around and be an invalid. That’s depressing. I gotta try stuff. Even if I fail.

Anyway, going to try to study more about neurons and the nervous system. It looks like it’s about to storm outside, so that is exciting for me. I like to just sit by a window and watch a storm for as long as it lasts. Sometimes I feel like I could do that for days. Or years. But Monty wouldn’t like that now would he. Peace!

Health Happiness and Functioning 50 Year Old Livers

Ew, Sick.

Published on by Mary Gelpi1 Comment

I promised myself I would dedicate one year to this stupid blog, good, bad, ugly, healthy, sick, and everything in between. This week falls under the ugly category. It’s hard to explain, but it’s been really challenging physically and mentally. I don’t feel like writing about it, but I’m trying to stick to my goal. I’m really terrible at meeting goals, so take this!!…me….Now I’m yelling at myself? Awesome. I’m on a roll.

I woke up feeling like death again today. Bad migraine, pain all over, and a foggy foggy head. I am still battling the migraine and the brightness of this computer screen isn’t helping exactly but nothing is helping exactly so I’ll keep going.

It’s been a sick week. A dead week. I can hardly articulate what I mean because my brain doesn’t seem to be doing its job; like processing thoughts. Like being able to talk and write correctly. Like making sense of peoples sentences. Like probably failing my anatomy test on Wednesday. But I need to stay focused and like my mom always tells me: Just do today. Just do what’s in front of you.

It’s weeks like this where I’ll be looking for my phone while talking on my phone. Where getting up from a sitting position makes my heart pound and gives me shortness of breath. Migraines check. Achy body check. Unwarranted exhaustion check. Depression, hopelessness, anger, check check check.

What I am trying to do is be at peace with what is happening in this moment. Even if that entails feeling like shit physically and feeling sad mentally. Sometimes, you need to let yourself be sad. Cry it out. Or punch it out through a pillow. This week has been a battle with myself. It’s crazy to me that I still have to remind myself that I can’t do the things other people can. I can’t keep up with the pace of most of the world. What’s been hard is the feeling that my life is absolutely out of control. It’s like I am floating, just going wherever the current takes me and not having a say so in where I end up. That’s a tough feeling. That has a little to do with the anxiety I’ve been feeling I think.

Someone once told me that control is just a facade and that rang true to me. People love to be in control, but the truth is we have very little control over many things that happen to us. People who do everything right get cancer. People who want to get pregnant can’t. People who are smart with their money lose it all to something they couldn’t help. Good people die young and evil people grow old. There are a million ways in which to feel like we have control. But maybe that’s all it is– a feeling. Not anything real.

Of course in saying all of this, I realize there are parts of my life that I can control. Like; don’t start drinking screw drivers at 1 am. DUH. There are consequences I know I can prevent and I need to start being proactive about those parts. I guess I am still dealing with the acceptance part of this and I don’t know how long that is going to take. Apparently like 15 years isn’t long enough. Maybe it will be a life long endeavor. Yaaay sounds fun! I really need to focus my energy towards positive things or I’m going to fall in a hole of doubt and never get out. There are people way worse off and getting by with more freedom and more happiness. Maybe Oprah is right. Maybe life really is easy, we just make it hard.

I have no idea if anything I just wrote was coherent or adhered to any type of organization or if it was all disoriented jargon. But, I wrote. When I really didn’t feel like writing. And I promised myself I would do this, so here is me doing it. And possibly failing. But at least failing means I tried. Fourth grade lessons coming full circle woohoooo! Head is throbbing now, back to rest.

Health Happiness and Disoriented Jargon

 

 

The Idiot

Published on by Mary Gelpi3 Comments

I am writing from a horizontal position on my couch with Monty next to me, who is on and off the couch chasing flies. Class started 10 minutes ago but I am still having the pleasurable experience of a migraine (day 3) and dizziness and weakness and all that jazz. This time however, I am not wondering how I got this way. I know exactly why I’m crashed  and it’s mostly my fault.

Halloween was Saturday and since I’ve never done a Halloween party sober, I thought I could handle a little drinking and be fine. This comes from a little thing called denial that I go through every now and then. I pretend like I can party like other people, work like other people, and stay on top of everything I need to. You’d think after so many years of being sick, overdoing it, paying the price, I’d GET IT BY NOW. But, it turns out I’m a slow learner. To be honest, last year was when I really began to even acknowledge and accept this illness and the limits it has created for my life.

Long story short, we ran out of beer so I intelligently switched to screw drivers. Way to go Mary, WAY TO GO. (If I ever drink sugary alcoholic drinks it’s really bad news the next day) Not only did I fall asleep at the Halloween party 30 minutes in, but I lost a whole day the following day. Sunday was spent in bed, in and out of consciousness, and in terrible pain. The migraine medicine didn’t work. The pain killers didn’t work. Nothing worked. It carried on into yesterday, which was really great because I had to move all of my belongings from my old apartment to the new house I’ve been staying at in New Orleans. Most everyone would agree moving is exhausting and pretty much sucks all around, and trying to move with a migraine is even more fun. Now it is Tuesday and I am still feeling the effects of Saturday night and the  crash from physical labor yesterday. I have one of my hardest tests of the semester tomorrow, so I am trying to drink a lot of fluid and stay horizontal until I get some strength and my head pain goes down. I’m really dizzy when I stand again. Don’t know exactly why that is today.

Anyway I’ve been reflecting a lot and it’s not like I’ve discovered anything new. I know drinking is just a bad decision in my state so I just really need to stop. Except for maybe a glass of wine or two at dinner every now and then. Especially because Saturday wasn’t even worth the next day that I lost. It’s simply immature and irresponsible at this point to keep doing things like that, so I’m going to stop for a while. I think the rest of 2011 needs to be sober. If I am serious about getting well, I need to give up things like that. And I should have a while ago. Simply put, I need to stop being an idiot.

Anyway this is getting boring and turning into a Dr. Phil pow wow. But maybe if I write it down I’ll be more serious about it. It can feel lonely not being able to do the things that other people my age are doing. I think if I hung out with 75+ year olds I’d feel much more part of the crowd. Maybe I’ll go scout out new friends at the neighborhood nursing home.

Before I made stupid decisions Saturday night, I had a really nice day. We went slack lining at City Park which I always enjoy. Not only because right now the weather in New Orleans is really sexy, but also because it’s something physical that I am able to do, and I usually don’t pay for it the next day. If you’ve never heard of slack lining here it is: Basically, tight rope walking, but on a slack line, (an inch thick.) I can’t tell you what the appeal is, I mean, it’s just walking a couple of feet above the ground. But there is something addicting about it. It requires focus and balance, and once I walked across the whole line on my own I remembered the great feeling of conquering something again. It was nice to have a physical goal and be able to reach it. Here are some slacking photos:

This should be a motivational fibro poster
monkey business
Caleb

While we were outside one of the coolest dogs ever showed up. Her name is Teegan, and she is basically the size of a pony. She’s an Irish Wolf Hound and made Monty look small for once. The two of them played tug of war over a stick for a really long time. Finally Monty had some real competition. At one point Teegan got a little mad and snapped at Monty, but he really didn’t care. He ended up with the stick ane that is all he cared about. He effing loves sticks!

Hey there lil guy

 

My Stick, MY STICK

I guess that’s all for now. I’m hoping everyone had a great Halloween, (better than mine) and I’m actually looking forward to the rest of 2011. Time to get healthy for REAL.

Health and Happiness and I mean it this time.

 

GUILTY

Published on by Mary Gelpi1 Comment

There is a phrase called “Paying the price” that someone with CFIDS/Fibro/Lyme Disease/WhateverthehellelseIhave/ is very familiar with. Paying the price comes from illness crimes. It’s very easy to commit crimes against the illness. The most common crime I commit is overdoing it, which results in paying the price. Paying the price means you don’t get to do much of anything for a couple of days because your body hates you and you’re going to spend ample time on a couch or a bed with disturbed sleep and in my case watching a lot of Frasier because let’s get real, Frasier rocks, and promising you’ll never do it again. NEVER! But of course, you do. Because this is life, and you want to have fun. And apparently you haven’t paid a high enough price. APPARENTLY.

Anyway I overdid it this weekend, thus I am paying the price. First of all I traveled. FELONY. I also went to a wedding. MISDEMEANOR. I drank at the wedding. MURDER. Then I went to a Saints Game. DEATH PENALTY. Was it fun? Duh. It was way fun. But now I am couch ridden and very behind in my studies. Tisk tisk. Luckily Frasier is on Play It Now on Netflix so I have plenty of material to keep my sick little mind occupied. I tried going to class and comprehending anything my teacher said but I could only focus on the way she says calcium and phosphate. “Calshium Phoshphate.” She’s from India and her pronunciations keep me on my toes. I left class really foggy headed and dizzy so I’ve been drinking fluids and staying horizontal to try to get back on track. I’m going home this weekend for some TLC and to rest. I am a sucker for peer pressure, and the only thing I get peer pressured into at my parents house is watching Bill O’Reilly, so I should be able to handle that.

I don’t feel like I have a lot to say. So I guess I’ll go now. My anxiety is a little better so that’s good news. Maybe I am just too fatigued to notice it lately. Anyway, it’s 4:30 pm, I’m going to get ready for bed.

Health Happiness and Felony’s

A Story About Death

Published on by Mary Gelpi2 Comments

Let’s talk for a second about death. Because I love it, and one day I’m going to die. And so are you! Isn’t that awesome? There’s something I do sometimes and I encourage other people to do it to: say out loud “I’m going to die.” I do it to free myself when I am feeling trapped– it reminds me that time on this earth is temporary. I think 99% of our lives are spent in either uncousciousess of the idea or denial. It could be an ego thing or a fear thing, but all I know is I’ve always been eager to talk about death but I’m usually dismissed as morbid or depressing. I don’t like to talk about it like “God dude, one day I’m going to die….what’s the point…blah blah blah.” I think talking freely and happily about death can be a very intelligent and healthy conversation to have, it just seems like no one wants to have it.

Well I do. And I realize why I’m like this. I have this very distinct memory of sitting on our back deck in Colorado in August. I was 12. The weather was hot but nice, and my mom and dad, a volumptuous jazz singer named Veronica who sang at our Church among other things, and me were sitting around a patio table sifting through sheet music. You know what we were doing? Picking out funeral music, for my dad’s funeral. He was dying of cancer. Theoretically this is totally depressing. But I’m telling you, it wasn’t! He was in this striped robe, (an awesome robe, I still have it) with his legs folded and laughing and making jokes, and so was my mom and so was Veronica. They set the stage for me emotionally that death is not all bad. They laughed, so I laughed.

My mom and dad sang at the choir in our Church so my dad was particular about the songs he wanted. He didn’t want sad music. And so we played happy music. Beautiful, hopeful, honest music. Veronica sang, and it was perfect. It was just how he wanted it.

So that was my first big experience with death. And I guess being so young and seeing someone that you expect to have around forever slowly leave, makes you examine your own immortality. It’s not so much that I care how I’m going to die, I just worry whether I’m “doing it right” while I’m here. I don’t know when I’ll die, and I want to make sure I’m staying in the moment. I want to be conscious. (Insert some quote about dance like no ones watching )

Wait, that last part is a lie. I TOTALLY wonder how I will die. Not in an obsessive way but out of simple curiosity. Although for a solid year all I did was dream about the possible ways that I would die. There was a lot of falling out of airplanes and a lot of not being able to breathe and a lot a lot a lot of tornados. Ick. Then one day after my health really plumetted in Jaunary of this year I was talking about my fear of death with my mom. Some days I really felt like I was dying, but it had been a fear I’d had for a while. I told her I wasn’t so scared conceptually of it, but I was scared of the pain of it. My dreams were really stressful; I was always closing my eyes and clenching my teeth as the plane went down waiting for the pain to hit me. My mom stopped me and said “Mary, you’re in pain everyday. You’ve been sick for years. Dying can’t be any worse than what you’ve been through?” And then we started talking about how life is the hard part. This is the painful part. Death will be exciting. It will be incredible.

After that I was able to let some of my fear about death go. I still do think about it a lot. I really wonder what is next. If there is a next. (I know there is a next. I know it!) What will it look like. And what will I be without a body? I could go on and on and this is what I think about when I go to sleep so sorry for the death spill on aisle 6, but I just felt like talking about it. Or typing about it.

Anyway I guess I am just hoping that if it’s a week before I die, I can sit outside like my dad did and laugh about my funeral and plan it with family and friends and know that I have loved and I am loved. Those are the things that will outlast me.

So what’s the point in all this? The point is: You’re going to die! And that’s great news! I’m going to die too. And we’ll see each other again, in other blogospheres, in other bodies. But we’ll have all the lessons and love that we’ve acquired while we were here. That’s what I think Heaven is. Something like that.

Health, Happiness, and You’re Going to Die! Smile!

Sweet Dreams

Published on by Mary GelpiLeave a comment

I don’t know what the eff is going on lately but I have this newfound anxiety which is pretty unpleasant. I’ve never had anxiety before so I’m still getting used to this new feeling. If I can sum the feeling up in symbols it’s like this: !!!!!!!!!???!?!?!??!?!?!?!?!!!!!!!!…..!!!!!!!!  …?….!!!!!!!!!!!!!. It’s kind of exciting this “anxiety”. Since I’ve never had it before it’s something new I can scratch off the list. Score! It’s like restlessness meets unease meets subtle guilt and fear you’ve done something wrong. It’s been about three weeks of this and still going strong.

The other fun part of it is my high anxiety dreams. I’ve always had stressful dreams that end up with me all sweaty and yelling something like “Doooon’t Killll Montyyy!!” My mom, who was a student of Jungian psychology told me to start writing my dreams down, and then I would get to the root of the issue. I guess half of the issue is not knowing what the actual issue is. I bet I sound like such a typical girl right now. So my mom told me to write the dreams and she’d help me analyze them. And I’m all “But I hate rehashing my dreams! They’re terrible!” And she’s all “You’ll never solve it that way Mary! Don’t be a quitter!” So anyway, I started writing them down.  And no, this is not totally unsubstantiated psycho babel. Think about it. Your conscious mind can’t possibly access and work through all of your current life situations, (it’s too busy texting and driving and facebooking) so when you sleep you access the greatest window to the unconscious. Jung said the mind worked in symbols, and so analyzing dreams is just a matter of breaking those symbols down. Mom if I’m getting this all wrong please correct it. You’re the smart one.

Anyway this is last nights dream:

I tell my mom that I want to go to Colorado for Thanksgiving but she telsl me we’re going to stay here and spend it with Jess (one of my best friends) and her family. I am kind of sad about this because I’d rather spend it with my Colorado family but I agree…the next thing I know me and Jess are floating on tubes down a river, a muddy Southern Louisiana river (the ones you go tubing on near our house) We’re tubing down the river and Monty is swimming at our side. Pretty soon we are going surprisingly fast down the river and just letting the current take us. Somehow I end up stuck in some sticks and rocks and I am trying to get loose. Jess also got stuck but she got out first. When I finally get out of the sticks I see a note from Jess saying she went on but she is really excited for thanksgiving and she’ll see me soon. I think that’s fine until I realize I don’t know which direction to go. The river doesn’t seem to go obviously in one direction or another. The next thing I realize Monty is missing. (this is a common theme in many of my dreams) I start to panic a bit because night is falling and monty is missing and I don’t know which direction to go. (see why I have anxiety!?!?)  As I am floating down the river I’m calling out for Monty..I start to float into a herd of HUGE GEESE but nothing happens. (as in they don’t kill me like I thought they might) Finally I see a sheriff standing on a bridge and I’m calling out to him loudly to save me. There is traffic and for a while he doesn’t hear me but finally he does. He anchors me up from the water and I tell him I have a dog that we have to find but the whole thing feels grim and it’s pretty certain we’re not going to find Monty.

THE END.
So much fun right? Actually the unexplainably large swarm of geese was fun. So here’s what my mom responded with:

“Awesome dream…lots to see but I’m crazy busy right now getting ready for company so we’ll have to process it later.  In the meantime write down who Jess represents to you and what Monty represents to you and we’ll go from there  love you, mom”

I understand, company can be a headache. That’s all for now. Health Happiness and Sweet Dreams.

Pay Phones

Published on by Mary Gelpi1 Comment

I still feel shitty today blah blah blah. My legs are all cramped up blah blah blah. The good news is it’s Saturday and all you have to do on Saturday in the Fall is watch College Football and as previously stated, I’m awesome at doing that. LSU vs. Florida, 2:00, woo woo. It really helps that the weather is so sexy right now. It’s like if you’re going to have a migraine, it might as well be in sunny 70 degree weather.

Yesterday my friend Jared and I went for a walk around mid city New Orleans and it was nice. (Again, weather.) And Monty was eager to play. My legs hurt and my headache was in and out but after two large large cups of iced coffee the headache went away and I got a little energy. By this point it was 2:30. I was finally awake. I don’t think I am meant to exist before early afternoon. I’m just not a great person in the mornings. I feel I do better in late afternoons and best at night. I like when the time changes and it gets dark early. It’s like my nighttime greatness doubles!

Can Phone.
.

Anyway on our walk we passed this payphone. I love seeing payphones these days because they’re like this ancientartifact that really aren’t from that long ago but anytime I pass one it never works or the phone has been ripped out. But if you’re really lucky you’ll get a dial tone. It’s like a technological four-leaf clover! So we pass the same one I always pass on the walk to the coffee shop and notice some mardi gras beads on the top. (You’re never ever far in Nola from some carelessly thrown beads.) And a diet coke can was where the phone part used to be. So my inventive friend attached the diet coke can to the mardi gras beads and made a can phone! 25 cents not neccesary! I just know some drunk person is going to come across it one night and totally have a conversation on that can phone and something about that makes me happy.

Then we took Monty to Bayou St. John where he swam after sticks and hopefully didn’t pick up anything poisonous in that very very very very dirty water. He was just having so much fun though, it might be worth the Bayou Flu. I bathed him when we got home at least so my bed wouldn’t smell like the bayou. Yes, he sleeps in the bed with me. Lay off. He’s a good spooner!

So a friend shared this article with me which sums up pretty well what a chronic illness can be like. She nails it on the head about time management. Everything becomes so calculated when you’re sick. It can be shitty, but if you start to look at it as the new way in which to live your life and not an obstacle to see as getting in your way, it makes it a little easier. Anyway her Spoon Theory makes perfect sense and it’s good to know I’m not the only dealing with fibo-myalgia-lyme-chronic-shit whatever. The world is full of sickleys! Health and happiness and can phones.