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

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20 thoughts on “Greetings From Bed on Hard Knocks Island

  1. I always find it amazing to read what other chronically sick people are going through and think, yes I’ve been there – or I am there, or wish I was only 3 days into a relapse. You are so strong, and I, like many of your followers, can relate to what you are going through. My mom often equates my energy levels to an energy bank. I have so much energy stored up in a given day, depending on how I feel, and if I spend it all or get an overdraft, well I’m not going to be feeling too well the next day!! haha It took me years and years to get this down, because I hated missing out on life when I had my down days. I wanted to experience my 20′s and I did, well, probably half of them anyways! Good luck!!

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  2. Even after over twenty years with narcolepsy/fibromyalgia, it’s still something I can’t really talk about with my family and have them understand. It is so hard to explain to someone why something you did one day is something you can’t do the next. I love to read your blog because you write about these difficult things with clarity, humor, and humanity. You remind me that I’m not crazy! This post has also reminded me that I have a very bad habit of overextending myself (with the inevitable crash) using this rationale: “I know I shouldn’t, but I’ll make an exception.” Except…. ANY time anyone wants me to do something I know will set me back, I make an exception! Because how can I disappoint them? Thank you for reminding me that someone else is relying on me to make better decisions…. ME.

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  3. Thank you Mary for all you have written. You just make me feel better. Always finding an up side to all your aches and fatigue makes me try to do the same. When I am in a low place and see you have a new post it ALWAYS makes things better even when I know you don’t feel well. Hoping today is a better day for you my new friend. I’m currently feeling the burn of overdoing it the last few days and am making myself stop. Right now, I feel IT is unstoppable at this point. Oh well. Going to hang in recliner and watch t.v. between naps today.

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  4. Sorry to hear it’s been a rough few days. Im glad you have an amazing view though. I miss laying around with you and having those good long chats staring out in the bay while the pool man tries to get all the shit Monty knocked in the pool. You may not be able to do everything but you certainly are wise beyond your years. Keep writing, I truly enjoy the updates and interestig topics.

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  5. Big crashes are never fun, I hope you are feeling more alive soon.

    I am still struggling to teach my family about fatigue and the fact that my limits are very different to theirs. My parents decided to take my with them for a holiday for a couple of days, which was nice, except there idea of talking it slow still required me to be on my feet…or at least sitting upright…for the majority of three days in a row, with late nights and early mornings… I nearly could walk by the end of it and I was so tired I felt sick everytime I moved.

    Here’s hoping that we can slowly educate more people to understand that fatigue is something which needs to be taken seriously so that we don’t have to suffer for our fun

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  6. I visited “Roly” today, not knowing where I was going and ended up here, thanks to him. I know whereof you speak. A CRASH is just that. It IS like a plane crash. You have a few seconds of recognition…”I going to crash.”, and then you do. It’s a total disappearance of life and a relocation into misery and lack of mental function. In my life, I say “It’s either sleep or die.” and everyone knows I will be absent until I’m not absent. And then I’m only partially functioning. I don’t talk about it on my blog, but I’m glad for a place where I CAN “tell it like it is”. I feel sorry for you because I KNOW what it’s like to lose large pieces of your life in a crash while everyone else is awake and busy living.

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  7. Wow Mary! I miss you and yours so much sometimes! I really hope you are starting to feel better, but I bet you had a great time with the family :) Take care and enjoy the view and I hope you make it out here next month!! I promise I can be very boring when I need to be! :) Nap time at my house is the best!

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  8. That’s the thing about almost any chronic illness though I find, my neuro says that because I am always in pain it gets tiring and that’s why I need to sleep so much and that’s why I might not always feel as rested as other people might on as much rest – but as you have pointed out, a lot of people don’t understand that and might think “Oh you’re sleeping too much” or my favourite “I wish I could sleep that much!” well it’s obviously not helping me that much, so no I don’t think you wish you had my problems but thank you ;) hope you recover from this crash soon, and aren’t people who can play any song on the piano the greatest? My aunt is like that too – I just adore it :)

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  9. Hey Mary! I have fibro too and I just wanted to thank you for being a strong vibrant voice for fibromyalgia and not giving up. I had to explain to someone today what fibromyalgia was, and I wish I could explain it as clearly as you do here. Sometimes I really hate my limits, like screaming and crying over the fact that I couldn’t do something awesome with everyone else AGAIN. Accepting your limits doesn’t mean that you have to be defined by them. Sometimes it is just the smart thing to do, like not run with scissors around a pool. Anywho, hang in there and I really look forward to reading more of your writing!!

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  10. Good for you for identifying that we CAN’T do it all, we must do our best to avoid overdoing it. But it’s always going to be so hard. And it’s definitely hard for others to understand why we can’t do everything. Hang in there, chica.

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  11. I’d like to thank you (again… and again…) for writing things like this. It is very difficult for me to discuss this with my family and even more difficult to accurately describe the “wet-blanket,” elephant sitting on your body, bone-crushing fatigue. I’m using your posts to talk about this with my family when it is difficult for me to even consider myself afflicted with all this crap in the first place! So, thanks again for writing about the suck, as well as shedding insight on how to deal with it with dancing dogs! (STILL cannot believe that!! And how much un-paid time that must’ve taken!)

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  12. Maybe you sang that song too loud-ha! You should post a pic of the fish you caught! sorry sis…I get too excited when I’m around family and fishing and I never want you to stay home because you’re soooo fun! But I feel partially responsible for this…and I’m sorry! I hope you feel better soon and I’ll real in all your fish from now on! Good post and good song!

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    • Not your fault brother! Clearly I overdid it by singing too loud. At least this crash happened in the name of fun- beach and fish! Don’t feel bad though, I’m in good hands. More pics and videos from the trip to come… :) And thanks for all the fun while you were here! Sometimes it’s worth it.

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