A Call For Positivity.

Good morning world, it’s been a little while. It’s 4 am in California and I have to say I’m OK feeling wide awake despite the indecent hour. I feel like I’ve been in a sedated state, in and out of consciousness for the last week–more out than in– and it feels good to finally feel alert enough to touch base with myself again. I have never been this sick before, at least not for this long. It’s beginning to make my other sick days feel more like mere child’s play. They’re nearly laughable when I think of them now.

I move when I can, which isn’t very often. It’s difficult to do basic things for myself these days and it sucks to have to ask, but that’s where I am, so I’m trying to make peace with it. Walking is really difficult and the weakness gets overwhelming. It sort of feels like trying to walk underwater–like someone smothered all of my joints in honey. Anyway, being stationary for such a long period of time isn’t super fun (for me or for Monty) and sometimes the mental housekeeping can be harder than the physical. It’d be nice to lose myself in the distraction of anything physical…tennis, shopping, drinking with friends, a road trip or camping! But it’s all out of the question, so I am left to my consciousness and the quiet of days as the world around me spins on without pause. I know it’s vital that I stay positive; that I don’t succumb to the fear and despair lingering between wakefulness and sleep, and that I surrender to where my life has me for now, and that I remain precisely clear about the difference between that and giving up. I am always going to pursue the healthiest routes and happiest choices, but I also need to just exist where I am- which right now, is immobilized in my sisters apartment. When I try to move around I am worse the next day, so it’s bed rest for me. Not much of a choice anymore.

The good news is, I have help. My sister has been doctor for a while now, while my brother-in-law insists on eating when I don’t want to. My mom flew in on Thursday so now the help has help and I am lucky for all of it. And Monty too of course. He’s a mental help to us all, and when things get sad or heavy somehow he finds a way to make us all laugh.  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 when he comes back in he trots straight over to whatever piece of furniture I am using as a bed and curls up next to me; content until the next time he needs to go out. 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 crashes, tears just roll down my face. I don’t even necessarily feel sad when it happens. 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 detrimental at this point if I give them too much pause. 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 them, and then I let them leave. I am beginning to learn the art of detachment. Or I’m getting a crash course in it. I don’t know that I have another choice, and I must say I’m getting pretty good! I’m writing about this because I know that so many people have felt what I am feeling now, 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 car door and earth, the universe, or God. I have done all of these things in darker moments, and sometimes a good scream or cry is necessary. It’s OK. Sometimes if I’m too tired to yell, I just flip off the sky. As if the clouds brought me to this point. It’s like the most passive aggressive protest I can demonstrate, but since my arms down to my fingers are weak, I don’t leave it up there very long, which usually 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 has been extremely hard. But I’m going to keep at it. I’m letting negative thoughts come and go and I follow them up with something better. Something true. I constantly remind myself of 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 at 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 can at least 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 self pity, even though these reactions and dispositions are often the easier, default choices. It’s funny how conditioned humans are to respond this way to stress in life–and how absolutely worthless it remains. 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 in the air, 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, of course, is to walk away wiser and stronger. And while it’s the harder path to take, I know it’s not impossible, and so many others have endured far worse and done just fine. In the meantime, I gotta stay positive. So send me funny stuff! Among the 25 pills, laughter is still my best and favorite medicine.

Health, Happiness, Hanging On.

Greetings From Bed on Hard Knocks Island

I’m writing today from a very foggy place. I have to concentrate really hard when I consider what day it is, what the date is, and when someone asks me questions it takes an unwarranted amount of time to answer. This is my 3rd day in bed, and as much as I thought today would be better since I literally slept until 6 pm yesterday and fell back asleep at 9 pm for the night– I’m still not feeling much more alive. Luckily, my mom and I are still holding down the fort on rich people island. One of the worst parts of being in a full-blown crash is how isolated it feels. Luckily at this residence, my room has huge windows and an amazing view, so while I was only awake 3 hours yesterday, at least I had nice things to look at.

Not Too Shabby a View

I know to an outsider this seems ridiculous. And I’m sure there are people out there thinking “You’re simply sleeping TOO MUCH, and that’s why you’re so tired!!!” If I had a nickel…. It’s very hard to explain what my body feels like amidst a crash, and this one is one of the worst I’ve had in a long time. I think it was Laura Hillenbrand, author of Seabiscuit and longtime CFS sufferer who said “Calling it ‘tired’ is like calling the atomic bomb a firecracker.” The only reason I got out of bed yesterday was to go to the bathroom and to take medicine. My mom tried to wake me up a few times and get me moving, but the thought of being upright nauseated me. Finally at 6, she made me drink a huge class of orange juice and eat toast and eggs so my body wouldn’t be running on empty. While I ate we watched a show on the science channel about the science of memory, dreams, and what makes us who we are, which was pretty mind-blowing. But by 9 I had fallen asleep again. I remember really really wanting to brush my teeth last night but standing that long just wasn’t going to happen, so I skipped.

Beyond the ridiculous fatigue are other symptoms that have been difficult to find relief to. I’ve had a non-specific pain radiating throughout my body, kind of like my bones are aching, that did not respond to pain killers. I’ve had a headache for a few days that is not a migraine but won’t go away does not respond to regular meds. Today at least the pain has let up and the headache has improved, but that heavy, wet-blanket fatigue hasn’t gone anywhere yet. When I woke up around 9 this morning, I sat up slowly in bed just to have my heart race and beat loud in my ears followed by a dash of dizziness to seal the deal. Good morning! God loves you!

The last symptom I’ll share, because we’re having so much fun here, is one of the most bizarre. I have this extreme sensitivity to sound that at times turns me into a crazy person. When I first became sick at age 9 this was one of my first and most jarring symptoms. Things like a hair-dryer, vacuum, or even the neighbors lawnmower were suddenly somehow painful, almost unbearable. I am noticing now that when my symptoms get bad, this sensitivity becomes heightened. It isn’t just loud noises either. For instance if someone leaves the laundry room door open with the washer or dryer running, I basically can’t relax or think straight until it’s closed. If someone is playing the radio in the car and there is static in the background, I feel like my head is about to explode until we switch the station. And it usually happens in the middle of someone telling a story that the sound of static becomes so overwhelming it’s all that I can hear, often causing me erupt in an erratic verbal explosion like “FOR THE LOVE OF GOD CAN SOMEONE TURN OFF THE FREAKING RADIO?! I FEEL LIKE I’M ON CRAZY PILLS!!!!” And then everyone looks at me like I’m on crazy pills. But in my brain, the sound is the equivalent to nails on a chalkboard. I’ve found that many people with CFS have at least one of their senses which is painfully heightened. For my mom it’s her sense of smell; one whiff of the wrong perfume and she can get an instant migraine. Don’t we sound like a bucket of fun!? We are. :)

On day 3 in bed, I was mulling over the last week in my head, trying to piece together the puzzle of what-in-God’s-name happened to land me in bed this long feeling like I was hit by a cement truck and then rolled over by it once or twice. There are a few possibilities and I’m pretty sure it was a combination of all of them which created the perfect storm, but one in particular: I pushed myself for too long. Since my family is rarely all together in the same city, I hate to miss out on anything when we are. My brothers are two of my favorite people–they’re a lot of fun. They’re also two of the most hyper people I’ve been around. They were very go, go, go while they were here, and since I love to be around them, I tried to go, go, go with them everywhere they went until I die die died. It’s the same lesson I’ve had to learn before that I will continue to learn until I get it right; I have to limit myself. No one will do it for me, mostly because no one else has to pay the price of overdoing it, only I do. And I’ve overdone it so many times you’d think I’d have it down by now, but I don’t. I have to learn to say no. It does mean missing out on some things that I’d like to partake in, but the alternative is missing out on 3 days of life, and you never get those back. The doctor calls this being proactive vs. reactive. If you can sustain yourself by limiting things and paying attention to your body, you can pretty effectively avoid crashes and super-sick days. There were a couple of days last week I didn’t feel great but made the decision to go to the beach anyway, or go fishing anyway, and those anyways ended up being pretty detrimental.

Just so we’re clear, I don’t write posts like these to be depressing. I’m not doing it to complain or fish for pity. It was my goal from the start to try my best and paint an accurate picture of what life with this illness looks like. And sadly, some days or weeks, it just sucks. No getting around it. At the same time, I remind myself this won’t last. I study the things that got me here, and I thank God I have family (mostly Dr. Mom) to see me through the really tough parts. I wonder a lot how anyone would survive this illness alone, and I honestly don’t think it’s possible. Everyone I talk to in the waiting room at the specialists office has one primary thing in common; they have one person to whom they owe their life. A spouse, a parent, brother or sister, child or friend. CFS isn’t terminal. You don’t die from the symptoms. But I really can’t imagine where I’d be if I didn’t have the help of so many people in the past. Sleeping under a bridge somewhere. Keyword: sleeping.

In the light of friendship, I’d like to share the Gelpi’s rendition of one of my all time favorite songs from one of my all time favorite shows: Thank You for Being a Friend, from the Golden Girls. Luckily my brother Doug can basically play any song you ask him to on the piano, so he did me a solid. My voice is terrible so I apologize in advance, but hey, it was fun. This is dedicated to Emily and Kaitlin aka Matt Damon.

Health, Happiness, Crash and Burns