You’ll Forget. And So Will They.

There is one component of this illness and autoimmune diseases in general which exacerbates the whole experience. The invisibility factor. You can’t see it. Many times when it shows its ugly head, no one is around to bear witness. People see us when we’re out and about and well, or faking it. I’ve lost count of the number of times I hear “But you don’t look sick!” People have a notion of what sick looks like, and this doesn’t fit the bill. One day you’re normal and the next day your plagued with something worse than a flu, or a hangover, but you didn’t do any drinking. It’s just such an enigma on so many levels, besides keeping up appearances, that it’s no surprise people just plain forget you’re sick. And it’s understandable. Because honestly, you forget too.

To this day I find myself committing to things as though I am normal, as though I have boundless energy, as though I don’t spend days in bed sometimes for no real reason at all. My circumstances aren’t normal. And some days I have to remind myself by the hour of my limits. Many times I fail to recognize them and I pay the price. So it’s no surprise that the people we love, the people we’re closest to-friends, lovers, family- they’ll forget too. And it’s easy to see why, but it will make you defensive. You’ll tell yourself they just don’t get it and they’ll never understand! And you’re right, they don’t. It’s impossible to know unless you’ve got it yourself. But don’t let that separate and isolate you more. You’ve got enough boundaries. When someone doesn’t believe you, when someone criticizes you, judges you, or doesn’t give the sympathy you’re looking for, let it go. Meet their disbelief with love and understanding. Because the truth is, if you weren’t sick with this, would you understand it? I know it’d be hard for me. I was young when I became ill but I remember distinctly things coming easy to me. Being a good gymnast. Getting good grades. Good family and friends. A 9-year-old with everything! I had no real reason for pause. I often consider what my life would be like had I not gotten sick and in general it’s with the notion that I’d be a better person living a better life. I really wonder about that now. Being sick and at the mercy of others help and kindness, I’ve learned remarkable lessons in humility and compassion, and those are just scratching the surface. I can’t say who I’d be without illness. But like my mom said once “Who knows? Maybe we if we hadn’t gotten sick we’d just be two capable assholes.”

The point is, when I still my mind and consider all the parts of this, I can understand the doubt, the skepticism, the misunderstanding from others. This is not a well understood disease, even for us sick ones. (But I know that one day it will be. I know that.) I remember once last year, I woke up with a pounding migraine. I was in one of my awful cycles. The first dose of medicine didn’t work so I took two, among my other cocktail of meds. I got out of bed around 1:30, hazy, tired, and the hint of my migraine still masquerading around my head. My boyfriend at the time saw me and said “You’re up! Hey, do you want to go shoot guns today?” At that moment I thought of 647 other things I would rather do than shoot a gun. The mere thought of shooting a gun made my headache perk up like what? huh? guns? Here I come!!! Even the suggestion of that activity made me mad. I felt really misunderstood and alone and thinking what I so often think: if they could only feel what I am feeling, they would understand. And it’s true. I think if most people felt the symptoms of CFS even for ten minutes, they’d have such a better grasp of what we are dealing with on a day-to-day basis. But that’s not possible. So it is up to us to communicate with love to those who don’t know. What we’re dealing with is basically invisible, and getting defensive and trying to prove it will exhaust us even more.

Besides my mom, who is also sick with this, I think about the one person who has been by my side throughout all of this, and has required the least amount of explaining. The answer is Monty. I realize that sounds juvenile. Oh Mary, you crazy dog lady..maybe you should talk to some PEOPLE. And truthfully I probably should. But I think about the number of beds Monty has slept at the foot of. Patiently he waits until I get up. Some days it’s only a minute..we don’t play and he doesn’t seem to mind. He follows me into the bathroom, he follows me out. When I go back to bed, he does to. And this is a very energetic and active dog. He could go all day, literally. But it truly feels like he picks up on sick days. When I wake up in the morning, he always takes some deep breaths really close to my face. It’s like he can tell by smell whether I’m going to get up or not. Sometimes he sniffs and hops out of bed ready to go. Other times he sniffs and goes back to bed. It really is like he knows.

The thing is, Monty doesn’t understand all the weird components to the illness. He doesn’t know what chronic fatigue syndrome is. He doesn’t understand why some days we play and other days we don’t leave the bed. Sometimes for a few days at a time. But he doesn’t even require an explanation or a defense, because what he is exemplifying so beautifully is living in the present. When it’s time to play, we play hard. When it’s time to sleep, we sleep like it’s nobody’s business. Whatever he does, he does fully. He shows up wholly to every moment. And it’s a truly impressive thing to witness. One of my favorite things is to watch Monty when he gets up in the morning. I open the door for him and he walks outside, stops, and sniffs the air for about 15 seconds. It’s like he’s taking in everything from the night and everything that the day will bring. I like watching it because it’s reflective, and we live such busy, fast lives, we constantly neglect reflection. I think it’s fair to say that it’s required for a happy life. We have to stop sometimes. We have to take things in. We have to feel our feelings. (Smell the roses, if you will.)And we don’t need to say it all on Facebook. Some things we should hold inside near our heart. Or whisper it to someone we love.

I am reading a book called Everyday Grace by Marianne Williamson which is incredibly poignant and really well-written. I find myself underlining entire pages. It’s always been a goal of mine to have a book club but of course I’ve never gotten it together and am bad at keeping commitments. So for now the blog will be it. And I invite all of you to read and share your thoughts on these books. I have about twenty more pages and will have a review/summary/dialogue next time. But if you’re looking for a book as a companion..this is a good one. It’s been seeing me through sleepless nights and reading it when I wake up in the morning gives me a happy way to begin the day. One of my favorite lines near the beginning is “We don’t need to push life so much as we need to experience it more elegantly, to be motivated more by inspiration than by ambition.” I like that idea. When I’m not in bed I let my instincts and inspiration guide me…even it’s just sitting on the porch swing and looking at the flowers, which I do a lot. Monty makes me throw a ball and swims laps in the pool. See?

Please just throw the ball.

 

Anyway, I am working on living a reflective life. I try to take in every moment truly, and feel it genuinely. Even if the moment is sad or fearful. I know that not feeling things through leads to trouble later on. I’ve been there before. For now, I feel happy. The sun is out and the porch swing is calling.

Health, Happiness, Smelling the Roses

Girl Without Pills

I ran out of pain pills last night. I took my last one at 2 am, with fingers crossed and divine pleadings for what lied ahead. I knew full well that if something were to go wrong tomorrow between the doctor or the pharmacist or something logistically silly that I have no control over, then it was going to be a very bad day. All it takes is a pharmacist who decides that it’s too early for your prescription to be filled, or decides they need the prescription in writing or says that only if it rains tomorrow will you be able to get your pills. Every time I pick up the phone to talk to a pharmacist, check on a prescription, call something in…my heart pounds. It’s a true battle. Seriously. If I didn’t get the pills by tomorrow I’d be positively out. Dry. And I’m years beyond the point of something like tylenol or advil being any kind of effective. The sad truth is that if a 200 pound man took the pill cocktail that I do everyday, he’d have a hard time functioning. If it sounds like I’m bragging I’m not. It’s just the truth. I’ve been trying to get my pills since last Friday. If I don’t get them tomorrow, on top of the pain there would be  bad withdrawal effects. Icing on the cake.

Bright and early this morning I called the doctors office to make sure they received the authorization form. They informed me that they received it and authorized it on Friday. Last Friday. Bad news. That means a pharmacist decided not to fill it for whatever reason. And now the state of my well being, my comfort, my ability to function and sleep, is resting on the shoulders of someone I don’t know at all, and whatever he or she decides is the appropriate day to give a sick girl her pills. But I am just one of many. I’m sure they’ve heard a lot of stories. A lot of abusers. Addicts. Maybe to the pharmacists we’re all addicts until proven sick. “Your pain medicine will be available to pick up tomorrow.” I can tell by the stern urgency in her voice, there is no talking her into giving them to me a day early. A day earlier than the arbitrary Thursday that someone decided was the absolute appropriate day for Mary to get her pills. I tell her thank you. I talk to her like she’s a cop. Make her feel powerful and thank her graciously. I hang up the phone and know that the next 24 hours are going to be tough. I’m not going to sleep tonight. It’s 10 am. The pharmacy opens at 8 tomorrow. 22 hours to go.

Oh you want these pills? TOO BAD!!!

I often try to calculate how many hours I’ve spent in line at Walgreens. On the phone with Walgreens. On hold for my doctor. On the phone with insurance. (Back in the day when I had insurance.) Acting as a mediator between two institutions which seem to often…miss one another. It’s probably better I don’t know. I don’t count the thousands of dollars out of my moms savings that go towards prescriptions. Inevitably the numbers would be high and sad and dissapointing. What I really need to do is be thankful that for now, there are pills out there to help me and for now, we have the money to buy them. Except today. Today was different.

Today was an insane reminder of what my body feels like in its natural state- which is fucking terrible. I’m sorry about the F word, but I really desired emphasis there. It’s been awful. Of course part of the feeling is withdrawal..but mostly it was just that widespread pain and awful, burning, firey legs. Under my fingernails hurt. My gums and teeth hurt. My body felt like a high voltage electric fence–exuding pain frequencies. It was pretty terrible. At the same time there was light at the end of the tunnel; I knew that by tomorrow I’d get relief. So it was only a day and I looked in the mirror and said for God’s sake Mary, I can go a day without! 24 little hours. And of course I could..it wasn’t going to kill me.Mostly it was a huge reminder of what life without pain medicine would be like, and it was really, really terrible. I know I sound like an addict- but I don’t get high off of my pain medicine. I take one at a time, and I don’t feel euphoric after. I just feel relief. But to outsiders I know what it looks like. And I can understand.

I fully prepared myself for another night up by myself, counting down the hours until I’d get my hands on something to take away the pain. A bath provides about 20 minutes of relief. But once you step out, it’s over. It all comes back. I wish I knew what was going on in my body. It’s like it’s being held hostage by an invisible monster. I realize that pain is not the natural state of the body. It wasn’t built to exist this way. I constantly think of a line in Mark Nepo’s book where he says “Pain is just a sign that something needs to change.” I wonder what needs changing in my life. I try to pay attention. I try to find the meaning in all of it. I do a lot of examining. I know examination is one of the benefits of my situation. It’s hard to truly examine life with all of our distractions and obligations- it’s hard to unplug from our devices. There is rarely quiet in the world. It’s up to us to find it.

I must have a pain killer guardian angel, because when my brother-in-law came home from work close to midnight I told him about my all-nighter plan and the insane state of my body. He happily informed me he had some leftover pain medicine from his knee surgery in his truck. HALLELUJAH!  The pain was going to go away now. I was going to get some sleep afterall. He saved me.

Sadly I know that it won’t be long before I run into this problem again. This logistical, bureaucratic, prescription nightmare is basically constant and I know that all you chronic sickleys out there have to deal with it too. And it’s not the pharmacists fault. It’s not the doctors fault. It’s partially a broken system, it’s partially the fact that drug addicts have tightened the reigns so much on oversight of certain drugs that it’s become hell for people who actually are just trying to feel better.  Last week it took countless phone calls and ten days to get my anti-biotics filled. Ten. I could bore you with the details but I won’t because we all deserve better!

It’s 2:30 am but I’m awake because 1. This is my quiet time. 2. It’s really nice to be alive and not feel the pain that I’ve been feeling all day. 3. When your soul wants to write, your soul wants to write. I have to be honest; all of this scares the shit out of me. I don’t want to have to take pills the rest of my life. I don’t like that I am dependent on medicine to be functional. But the hard truth is that the alternative is just not doable, or worth it to me. I couldn’t endure that type of pain everyday and be a solid human being. I think, eventually, it would just break me. It scares me because while I feel like I’m getting old, in the grand scheme of things I am only 28. I want to get married one day. I want to have kids. I don’t want my liver to explode. But there’s not really a way those things are possible for me right now and I trust that I am where I’m supposed to be. I really do. Being on my own has been immensely educational. In a way it’s made me stronger. Smarter. More self reliant. You sort of learn how to make yourself happy, and there is real value in that. I heard somewhere that 40 is the new 30, so maybe I don’t need to worry about these things just yet. I know the focus needs to be on getting well. It also needs to be on acceptance and finding my heart of joy, and writing, even when things are grey. I want to feel completely whole before I bring in anyone else to my life, and there are still a few pieces I’m looking for.

Anyway, now that the pain has subsided, I should try to find my way into the world of sleep. I day dream all the time about a life without sickness, without pills, without entitled pharmacists dictating a life. But the truth is, even in my dreams at night, I am looking for pills. Taking pills. Spilling pills. Pleading with pharmacists. When I wake up, its because of  pain. I take a pill of almost every color, and then I sit and wait. Every day the same. The life of a sick kid.

It’s better than it sounds.

Party On Wayne!!!

Health, Happiness, Pills

Dog Spelled Backwards

 

Help. I’ve fallen. And I can’t get up.

I have basically been crashed since the day after Christmas. Even before Christmas, my operational value was at maybe 40%. It has steadily gone down. My joints have become cloudier, my muscles weaker and heavier, noise louder than ever, and ordinary light offensively bright. Simply stated, moving has become difficult again, and this is the hardest symptom of all for me to handle. It’s suffocating. I’d prefer pain honestly. My legs are useless. Sometimes I find myself reaching for things across the bed without so much as flinching my legs because it takes an unwarranted amount of energy to move them. I can’t say what is happening to me. Or what has happened to me. I know that every night I pray really really hard that the next day will be better. When I wake up the next morning, and things are the same or worse, I keep going. I take my daily pill cocktail, wait for relief, stare out of windows, and contemplate what a strange and sedentary existence I have. What else can I do but go on? It’s hard. It hurts. When I think about how long it’s been, I fear how long it could last. But I’m not giving up now. I can see the appeal, but I’m not gonna do it.

 

Chronic Fatigue Syndrome doesn’t kill you, directly. It’s rate of mortality comes from a scary little thing called suicide, and having suffered with this since age 9, it’s easy for me to see why that option can feel like it’s all you’ve got. It doesn’t feel like much of a life, laying in bed each day. Only hearing the sounds of life but not actually participating in them. It’s like smelling the aroma of baking bread and never actually getting to eat any. You watch entire seasons change, babies turn into toddlers, this Christmas into next Christmas, and you expected things to be different by now. You’d fantasized a certain life for yourself by the time you got to 25. And when that didn’t happen you said 26. And then 27. And now 28. I’m starting to forget the numbers. They’ve never changed anything before.

It’s really hard to understand God during these times. I grew up Catholic and have always had my relationship with God- but it’s very personal. I even imagine him when I speak to him, in a very specific location, as if a bulleted address on Google Maps. I think of him now, through darker and unhappy times and I think either he trusts me too much, or he forgot about me altogether. But would the master of the Universe forget about someone? So much goes into making a person and a life. I know that I am an incredibly tiny tiny piece of the whole, but still, a piece. And while in the context of eternity and potentially multiple universes we can feel incredibly small, I somehow don’t doubt for a second that my life matters, and so does everyone’s who is alive. I don’t say that with a lot of pride either. I say it because there is something solid and untouchable in me, something unstirred by discouragement, failure, despair, loneliness and tears. It says Keep Going, and so I do. But the truth is I don’t know what for and I don’t even know in what direction. Certainly I am lost. But it’s sort of for my own bitter curiosity that I won’t give up. I want to see what’s at the finish line waiting. I need to know this is not all for nothing.

I must be honest, I think a lot about how stupid I think my life is. I know that seems irreverent at best, but sometimes you just have to laugh about it. Today I was too fatigued to brush my teeth. My God! It’s so stupid! It’s so stupid it’s funny. You should see what I look like these days. Somewhere between Jim Carrey when he visits the Nut House in Ace Ventura wearing brown boots and a pink tutu, and an old senile man in pajamas on his front porch with a cigarette and a shot-gun. Sometimes I stare at myself in the mirror, not quite recognizing what I’ve morphed into. The steroids have puffed my face, my skin is pale and there are dark circles I never had until now. But more than that, it’s like the lights are out. What’s that phrase? A shell of who I used to be? Something like that. I feel like a caged animal and I fear that’s what I’m starting to look like too.

 

Thanks for the clothes Grandpa!

Tonight I cried I guess because it all catches up to me once and a while and feels too heavy to keep in. My mom says we’re all due for a little meltdown now and then. I cried but what I wanted to do was scream, because I am physically nauseous from how sick I’ve been. How relentless it’s been. Day after day, hour after hour. When the weakness makes just standing up a chore that takes energy, my stomach turns. I’m tired of being sick and I’m tired of taking pills. I want to scream but I don’t have the energy for it, so I cry. By default.

 

When I cry I blow my nose really loud, hoping that it’ll wake God up from his sleep. I hear a rustling and when I look up, it’s Monty standing there, wagging his tail at me. He’d snuck in when my head was buried in my hands. Truthfully, I was happy to see him. It then occurred to me that Dog is just God spelled backwards…so maybe he is listening after all. Maybe Monty is God! I don’t know. And that’s the hardest part about moments and times like these. We don’t see how they fit into the grand design of our lives yet. All we see is what’s happening now. For now, there’s pain and suffering, and if God reads blogs, then I guess this is me asking him to take it a little easy. Maybe just for a day. Either way, I will still go to sleep with hope that tomorrow might be better. And if it isn’t, then the next day, or the next day or the next. Keep going something tells me, and since I have nothing else to do, I guess I’ll do that.

Health and Happiness and Keep On Keepin On.

 

How to Hang On.

I came across these words in the middle of the night last week when I was really sick and couldn’t sleep. I was feeling scared and anxious–of what I wasn’t exactly sure, but there was some sort of doom over my head and I didn’t know how to relieve it. This passage helped. Today my mom read to me the same excerpt out loud while discussing life and love and hardship. I figure twice in seven days is enough of a sign for me to pay attention to the words, so I thought I would share them here as well. They are written by the mystic Joseph Cambpell.

The loss of a love and the pain of a broken relationship is an overload of projection. That’s all it is. In youth, your whole life is this wonderful dream that “This is It”: this relationship is the fulfillment of my fantasy and I can’t imagine life otherwise. No argument can quell this feeling of total projection, of everything in the other one. I guess we can all recall an episode of an adolescent relationship that seemed to be the all-in-all and then went to pieces for some reason.

When a relationship breaks off, it takes a person a little while to settle and find a new commitment. It’s after the breakoff, when there is no new commitment and life has been divested of all of its potentials, that this painful reaction takes place. For some people this is a dangerous period.

The psyche knows how to heal, but it hurts. Sometimes the healing hurts more than the initial injury, but if you can survive it, you’ll be stronger, because you’ve found a larger base. Every commitment is a narrowing and when that commitment fails, you have to get back to a larger base and have the strength to hold to it.

Nietzsche was the one who did the job for me. At a certain moment in his life, the idea came to him of what he called “the love of your fate.” Whatever your fate is, whatever the hell happens you say, “This is what I need.” It may look like a wreck, but go at it as though it were an opportunity, a challenge. If you bring love to that moment – not discouragement – you will find the strength is there. Any disaster you can survive is an improvement in your character, your stature, and your life. What a privilege! This is when the spontaneity of your own nature will have a chance to flow.

Then, when looking back at your life, you will see that the moments which seemed to be great failures followed by wreckage were the incidents that shaped the life you have now. You’ll see that this is really true. Nothing that can happen to you is not positive. Even though it looks and feels at the moment like a negative crisis, it is not. The crisis throws you back, and when you are required to exhibit strength, it comes.

The dark night of the soul
comes just before revelation.

When everything is lost,
and all seems darkness,
then comes the new life
and all that is needed.

Health, Happiness, Hang On.

A Call For Positivity.

Good morning world, it’s been a while. It’s 4 am in California and I have to say I don’t mind feeling wide awake right now. I feel like I’ve been in a sedated state, in and out of consciousness for the last week, so it feels good to be up, even in the wee hours of the morning. I move when I can, which isn’t very often. It’s difficult to do basic things for myself and it sucks to have to ask, but that’s where I am, so that’s what I need to accept. I have never been this sick before. It’s kind of making my other sick days feel like childs play. Walking is really difficult and the weakness can be overwhelming. If sort of feels like trying to walk underwater, and like someone poured honey all over my joints. Anyway, being stationary for a long period of time isn’t super fun, sometimes the mental housekeeping is as hard as the physical. I know it’s important that I stay positive, that I don’t succumb to fear and despair, and that I surrender to where I am right now. That does not mean give up. I am always going to pursue the healthiest routes and happiest choices, but I also need to just be where I am- which right now, is immobilized in my sisters apartment. When I try to move around I get worse, so it’s bed rest for me.

The good news is, I have help. My sister has been doctor for a while now, and my mom flew in on Thursday so now I have even extra help. And Monty too of course. I think he’s anxious for me to be back on two feet but he’s patient as always. He’s taken to my sister and brother-in-law,  like he knows they’re the ones with the energy…they’re the ones who will throw him the ball. So he plays fetch with them and my mom and sleeps by me. He is a constant reminder to be in the present moment. That is something that dogs just get, and humans mostly miss.

I am going to be very honest and say that emotionally I’ve been kind of a wreck. I’m not a huge crier but for some reason when I fall into these weak/dizzy spells, tears just roll down my face. I don’t even necessarily feel sad..it’s like this strange cause and effect I don’t feel I can control. So, I let the tears come. I try not to harp long on any negative thoughts or fearful worries; they are not only useless, but also detrimental at this point. My mom told me “You can’t afford the privilege of a negative thought right now,” so I try to stay away from them. If they come, I let myself have them, and then I let them leave. I am beginning to learn the art of detachment. I’m getting pretty good! I’m writing about this because I know that so many people have felt what I am feeling, and many of them have not had support systems behind them. I want anyone to know who’s sick or troubled and reading this that it’s OK to want to punch the wall, scream really loud, curse the earth, the universe, God. I have done all of these things in darker moments, and sometimes a good scream or cry is necessary. Sometimes if I’m too tired to yell, I flip off the sky. It’s like the most passive aggressive protest I can demonstrate, but since my arms are so weak I don’t leave it up there very long, which leads to cursing. Haha. But what I also know is that anger and screaming and crying and cursing…it just doesn’t get me anywhere in the right direction. It doesn’t move me along. It’s really easy to be mad at a situation; to be pissed off or sad or claim unfairness. But where that gets you is stuck further in the predicament you were already in, just now you’re a miserable person in a shitty situation. It’s just plain more interesting to be a happy person in a shitty situation. Try it! When people ask how I am I say “Terrible! And it’s the best day of my life!”

My goal now is to stay as happy and positive as I can, which so far is really hard. But I’m going to keep at it. I’m letting negative thoughts come, and go. I follow them up with good thoughts. I constantly remind myself what I have; love, a family that gives a shit, good doctors, good friends, and the best dog in the world.  A few examples; my friend Kaitlin aka Matt Damon texts me our inside jokes throughout the day, often consisting of lines from Billy Madison, Orange County, or philosophical thoughts on the Golden Girls. Sometimes a one word text can make me laugh, and that feels like a step in the right direction. My brother Nick sends me interesting and positive reading material or funny pictures of the baby. My Stupid Friend Jess sends me her favorite facebook statuses of the day, which are always terrible. And hilarious. My mom and sister let me cry when I need to but are always encouraging, reminding me of the truth, and that is so necessary for times like these. And me, I’m kind of just hanging on. I don’t really feel like I’m driving the car to my life right now, but, I at least I can control the music. Is this metaphor too much? Anyway, instead of playing like, Coldplay and Radiohead, I’m trying to play happier and motivating things. The Black Keys, Vampire Weekend, The Rolling Stones, and Ke$sha. Come on, that Tic Toc song can make anyone dance. We’re out of the metaphor now, I actually like listening to that song.

So, that’s where I am. It’s a really rough time, but I know it isn’t forever. And I know the answer to it all is not in anger or sadness or pity. It’s funny how conditioned humans are to respond this way to stress in life–it’s absolutely worthless. You’d think after 2000 years of civilization we’d have gotten it by now. Even the dogs get it! Anyway, as I sit immobilized, a heat pack on my muscles and the smell of BenGay circulating, I’m beginning to retrain myself. My body is crazy weak, so I’m going to work on a stronger mind. I know that every situation is an opportunity to grow, and I guess it comes down to whether you want the experience to leave you larger or smaller than you were before. My hope is to walk away wiser and stronger. In the meantime, I gotta stay positive. So send me funny stuff! Among the 25 pills, laughter is still the best medicine.

Health, Happiness, Optimism.

A Shit Show.

I don’t know of any other way to describe the past week except as a shit show. And maybe that points to how juvenile I am, but I honestly can’t think of a more sophisticated word. If you read my last post, you can see that I was in a bit of a bad way last week. I crashed really hard last Monday and was feeling pretty deadly. We did the normal protocol and quadrupled my hyrdrocortisone and I mostly stayed lying on the couch or in bed, researching the little amount of money spent on this illness and writing somewhat of an angry blog about it. I don’t usually like to succumb to moments of mental negativity like that. I think anger has its reasons for existing, but I have always wanted this to be a place of optimism, humor, and hope. So I hope I didn’t put too bitter a taste into the community here. I also need to remember that more research than ever is being done, and while we do have a ways to go, we’ve already come along ways. I’m not going anywhere, and no matter how far agencies like the NIH and CDC take the research, the goal is always to be as happy as possible, with whatever you got. The other goal of this blog is to promote awareness, and so maybe my little moment of anger can help do that in the long run. I think the best thing it did was inspire many of you to comment or email with your stories. Many people say it helps them to read this blog, and the truth is, it is just as helpful for me to hear from you. It’s easy to get so lost in your own story that you only see yourself in the world. The truth is no matter how poignantly real it can feel sometimes, we aren’t alone in this, and that’s maybe the most important thing to remember.

On Sunday morning I had started to bounce back from my week-long crash. I thought. Part of the “Shit Show” of last week was that on Monday, our kitchen flooded due to a leak in the wall. It was going to involve some major reconstruction (basically knocking out every wall in the kitchen) but they assured us it would only take a week. My sister thoughts were that we should move apartments. She’s all too familiar with how long a “week” takes in contractor time. But the idea of even packing my bags in a suitcase felt devastating to me, and luckily my brother-in-law was in no mood either to up and move overnight. So we decided to stay. But a few days later as I was walking through the hall, water seeped up through the carpet onto my feet. Never really a good sign. The workers came back and found the leak had begun to flood the master bed and bath and the front closet. By Friday morning, I was still pretty crashed and somehow there were 5 workers in the kitchen beginning demolition and making a shit ton of noise. The noise permeated my dreams but I stayed sleeping. If you can call it that. Keegan came in my room a few times asking if I wanted to go to his parents house to sleep, but the idea of getting in a car and going felt like too much. I said no, rolled over, and went back to exhaustive sleep. The demolition went on.

By the afternoon Keegan and his friend were moving the big stuff out to an apartment across the street. I packed in the laziest sick person way possible. I honestly didn’t have a lot of stuff, but what I did have I threw in two boxes Keegan gave me, and left all my clothes on hangers. Keegan and his friend moved my bed first and the couch so that I could literally go from my bed in the current apartment to my bed in next one. As they moved it on the first load, I laid on the floor in my empty room with Monty and fell asleep staring at the ceiling. I watched Keegan and his friend carry heavy things and sweat and noted how interesting faces look when you’re looking at them upside down. Here are some pictures of me during the move.

Day 1. 

Day 2.

As you can see I’m a big help. Anyway in two days, Amelie and Keegan had everything packed, moved and unpacked, and I laid there watching life walk back and forth carrying boxes over my head. It was a new perspective though and I’m always down for new perspectives. My favorite line from the whole moving experience came from my sister as she was unpacking in her new bathroom and I was laying on the couch counting ceiling popcorn. “Our fucking toilet is leaking!!!!!!” This was after three cabinets fell completely off of their hinges in the kitchen and the sink pipes leaked underneath when you turned the water on. When it leaks, it pours. If I could consume alcohol, I would have played a drinking game called “Drink Every Time Something Breaks” and had a gay old time. Instead I slept or played DJ for Amelie and Keegan while they packed and unpacked–which mostly consisted of me playing Carlae Rae Jenson’s “Call Me Maybe” on repeat. God that song is good.

By Sunday we still didn’t have cable which meant we WERE WITHOUT OUR SUNDAY FOOTBALL and my sister was WITHOUT THE RED ZONE ON ESPN which meant she COULDN”T TRACK HER FANTASY TEAMS ON A PLAY BY PLAY BASIS which was a problem, you can imagine. So we went to a bar with 4,000 TV’s and I felt sad as I watched the Saints lose in overtime and was the only Saints fan in the joint. I still yelled ‘Who Dat’ if ever so quietly. Unfortunately my body felt like it was slowly slipping away from me. An hour later when sitting upright felt near impossible and I felt a migraine coming on, I went home and fell straight asleep. Whatever momentum I had felt that morning was long gone and when I woke up a few hours later I had the migraine of the century, which lasted until yesterday. I didn’t fall asleep until 4 on Monday morning and when I woke up, I was more weak than I’d ever felt. I took Monty outside, but with this new apartment comes a flight of steps to get to ground level. I hate those steps, and I cursed every last one as I climbed them one by one, the way old people do. I threw the ball for Monty a few times, then apologized to him for being a human wasteland and came back inside. I set up camp on the couch and wondered what had happened to my limbs over night. It was like the cement fairy came over night and filled my whole body up. Thanks cement fairy!!

Yesterday morning I didn’t think I felt any worse until I tried to get out of bed. It was really hard to move. Nearly impossible to walk. I didn’t feel like I could make a fist. I wasn’t sad but I kept breaking down in tears, I think because I was scared. This felt different; worse than it’s felt before and I was nervous this time I might actually croak. Usually I just curse the illness, roll back over and go to sleep. Anyway, going to the ER is always a last-case scenario but after talking to Dr. Emils (one of my best friends in her last year of med school), my mom and my sister, we decided it was the best option. At least we could eliminate the possibility of eminent death since I had been getting worse over the week and the iv fluid and steroid would help with the weakness and get the migraine to go down. So Amelie left work early, helped me up the stairs and I cried as I said goodbye to Monty because I really didn’t want to leave him and I was also scared I’d get bad news at the hospital. It was the first time I found myself praying they wouldn’t find anything, because usually I’m looking for an answer. This time I just wanted the normal “We don’t know exactly what’s wrong, but here’s something for your discomfort.” Luckily, that’s what I got. As well as kind nurses and doctors and basically no wait time. A whole other world compared to the New Orleans hospital last January.

Hospital gowns, like mullets, are business in the front and party in the back. 

So, that brings us to the present. The good news is I’m not dying. I only feel like I’m dying. Haha. But, that I can handle. For some reason I woke up with swollen joints this morning, so it’s just another reason to take it slow. It’s also a creative challenge to see how many fun things I can do from the supine position. I don’t know what this crash is about, but it’s just going to take some waiting out. The best part through all of it is I realized just how much I didn’t want my sometimes shitty life to be over. I had been pretty down the last week being sick. I felt myself saying “Owell” as a speeding car raced past Monty and me on our walk and I entertained the thought of it taking me out. It was just my dark sense of humor of course, but now I say “No way JOSE!” to that car, and I live to see another day. Even if from the couch. Sorry for the length of this one. Like I said, it’s been a shit show of a week

 

Health, Happiness, Shit Shows.

 

 

A Sick Kid With Some Questions; The Scandal Behind Chronic Fatigue Syndrome.

It is midnight and I just finished taking a bath. I experienced a really bad crash a few days ago and spent the last two days in bed waiting it out. I am unsure what caused this most recent crash. I have been taking it very easy here but something zapped. A fuse blew. Bye bye Mary. The bath I just took was the first one I’ve taken in four days. I know that this is disgusting. I am someone who prefers to shower everyday, do my hair and makeup everyday, and wear clothes that are coordinated like the commercials tell me; transitional outfits from day to night! It’s no secret that my frequency of showers has lessened in the last two years. But when the simple act of getting up to blow your nose, or reaching for something that is more than an arm’s length away and you return to your position panting, out of breath, heart racing, body weighed down…it sort of leaves showering out of the question for the time being. It’s impossible to stand that long. This is why when I do muster up the energy to get clean, I take a bath, which requires a lot of energy in itself. But I take a sick person bath. I use a water bottle to pour water over my head so I don’t have to sit in weird positions and once I’m in, I’m in for a good hour. I don’t know why, but I often start to feel like a human being late at night. It’s like the clouds part just for a moment. So while I get that small window, I take a bath and tend to personal hygiene; Brush my teeth as hard as I can, because I don’t know if I will have the energy to do those things tomorrow. If today is any indication, then probably not. Monty sleeps, raising his head every now and then at a noise I make, then goes back to dog dream world.

I know this all sounds pretty grim, and it is. This is the ugly part of being sick. The part that people who know me socially don’t ever see. The part that sometimes, like yesterday, become too heavy for me to bear. Not just physically, but mentally. All of the sudden, it weighs too much. I feel stuck. It’s all piled onto my chest to where even my breathing feels labored. I call my mom and she walks me through it. I let the dark thoughts come and leave. They are just thoughts, fleeting and insignificant. I say “I will not lay down and die today.” And then I write it in my notebook. And then I lay down. But I don’t die. (Spoiler alert!)

I survive. Suddenly, I don’t want to write poetry about being sick. I don’t want to find the wisdom in the pain. I don’t want to ask what the lesson is and find how I am a better person because this situation forced me to dig deeper into consciousness. Which is true, it did. But some nights like tonight, I’m just ready for it be over. In my bedridden state the last few days, I’ve been researching the very bizarre and twisted history of this illness, and it’s surprising to say the least. Tragic and appalling to say the most.

I want to know why the National Institute of Health has continuously allotted such low sums towards the research of CFS.  For 2012 it has allocated $6 million, ranking it 220 out of 232 diseases. You can find it at the bottom of the list underneath Psoriasis ($10 million) and Hay Fever ($7 million). To give some context, similar illnesses like MS were given $121 million and Lupus, $105 million, but have less prevalence and a similar level of disability. As a result, countless studies and research efforts in the way of CFS have been put on hold or simply terminated citing funding issues.

It takes money honey.

I want to know why the Center for Disease Control has repeatedly ignored, overlooked, and downplayed this illness for a quarter-century–An illness that the head of the CFS branch himself said left patients as functionally impaired as someone with AIDS or Breast Cancer. The agency not only minimized it’s detriment by calling the thing “Chronic Fatigue Syndrome” (they might as well have called it Lazy Ass Tired Folk Disease) it’s now been documented that the CDC routinely diverted money intended for CFS research to other projects. This is all documented in the book Osler’s Web and this article by David Tuller from November of 2011. A 1999 report from The Department of Health and Human Services found that between 1995 and 1998, at least $8 million was charged to the CFS tab but rerouted to other projects and another $4 million could not be accounted for.

I want to know why the most promising research of CFS is being funded and executed by private institutions and donors, like the Whittemore Peterson Institute or at academic institutions like Columbia and the University of Miami…no where near the CDC, the NIH, or its constituents.

This isn’t just about me or just about other sick people with this illness.  Contested illnesses like this cost the US billions of dollars annually in lost productivity and depletes healthcare resources. Less than 1/5 of patients with CFS work full-time, and more than half receive disability benefits. The estimated cost of lost productivity from CFS annually is $18 billion. Just over two years ago I worked full time, spent my money, paid my taxes and I was happy to do it. Now I am unable to work and unable to receive or afford health insurance. My doctor has suggested I apply for disability. I am 28. I do not want to continue taking 25 pills a day.  I do not want to live off disability. I would actually like to go to work and be a contributing asset to the country. But I know that in order for these things to happen, the dialogue has to change. There are actually people and doctors out there who don’t believe in this illness, as though it were fucking Big Foot.

I know that getting mad and pointing fingers won’t really help me out tonight. I have accepted my life with this illness. I will be OK whether things change or not. I have found ways to be happy given my circumstances and some days are harder than others. I guess you’re catching me on a hard day. I have a family who supports me and was lucky to find a doctor that is a leading researcher of this illness, although her clinic at this point is barely staying afloat. But not everyone has what I do. I have received so many emails from people whose doctors and/or families have dismissed them, not believed them, or just written them off as depressed. This has to change.

I don’t know what the next step is, I just felt the need to get this stuff out in my little corner of the internet. Maybe the right set of eyes will befall on this one day and some real change can take place. Maybe nothing will happen, in which case, nothing was really lost. I’ll be in bed either way. The thing is, I am not a little kid writing to Santa Clause–This is change that is actually possible. I think there are far more important matters in the world than CFS/ME research and I look forward to the day when this is no longer my cause. I know this country can do better, and I have not ever lost hope that with the right people and minds at work, this is something we can fix, even if it’s after I’m gone.

Health, Happiness, Change.