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.

 

All my classy PJ's were in the wash.
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.

 

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45 thoughts on “Dog Spelled Backwards

  1. Hey!

    I don’t know you, but thanks for sharing your blog. This summer, I was diagnosed with “an autoimmune lupus-like disease” and went through many things that you described in this entry.

    Every day, I had two alarms–one at 6:30 to take my pills and then one at 8:30 to actually attempts getting out of bed…many days, the clock showed 9:00 before I got completely vertical. I’m young, like you, and stuck with a old-person’s disease. Also similar to your story, I grew up Christian. I know there are so many religions out there, but the only true God is ours–and He is so personal. He helped me through the worst this summer and is continuing to guide me through day by day. That’s probably the only way I can still have joy in my life.

    Not meaning to preach, just wanted you to know your story is an encouragement to me and I’m praying for you whenever God brings you to mind.

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  2. Your posts touch my heart. Whether crying or laughing, I am awed by your vulnerability and wisdom. Monty is indeed your God and his love is all you need. My Sylvester passed on almost 4 months ago and each night without that love in form is painful and hard. That’s when my Lyme goes into hyper-drive and my Boy would body slam my face and drag me into sleep. Now, not so much. His love is ever present but after 18 years of him as my sleeping buddy, nights suck. But last night goggling at 3 am, I found out that St. Sylvester was this Russian dude that kept seeking silence and solitude in the forest. And people kept following him for his presence and words. Which he kept giving them. Even though all he wanted to do was sit under some trees in Silence and worship God. So in honor of Sylvester and myself, I’m going to go sit under some trees in Silence and begin writing. Because if I know one thing Mary Gelpi, your words are saving people. From feeling alone and too weak to go on. From themselves and their thoughts of despair. You are a beacon of light in this pool of murkiness. Monty will keep you smiling. Even if it hurts.

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    1. Wow, thanks for you words! You’re very encouraging. I’m sorry to hear about your Sylvester..I know how it goes. I had a one year old black lab die suddenly before I had Monty..and it was just as painful as a family member dying. As time went on I healed, but what really made me happy again was bringing home a new puppy. (Enter Monty) Nothing can fill the energetic space of a dog except another dog…there’s just nothing like em. :) I hope you’ll consider getting a new one..and in the meantime have fun under some trees! Thanks for reading. xoxoxo

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  3. I just cried a little.. It hurts to read that others have it as me, or even worse in your case… I got CFS myself, and some days, when my roommates tries to wake me up, I just wanna stay in bed until Somebody comes to carry me out, to feed me, to love me. in periods I feel totally useless, and I just wanna get ran over by a truck, not to die, but to get a few weeks in a hospital an excuse to sleep and just lay there, to get peace and to be fed…
    But I also have better days, and I hope you do too! You deserve good days, strong Lady!

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  4. Mary, have you considered that you may not have CFS or Fibromyalgia? It seems to me that all of your symptoms could be attributed to your chronic Lyme disease. And from what I’ve read, since you have tested positive for Lyme, the last thing you should be doing is taking steroids! They can have devastating effects. There’s a medical center in Arizona called Envita. Please look into it. They have a 90-95% cure rate for Lyme. Apparently they take eastern and western approach there. What sold me is that they use colloidal silver, among other things. I’ve used it many times and I know it works. It’s expensive I’m sure, but when you’re cured you’ll have the rest of your life to earn that money back.
    Just like your Dad tried, you may just need to find your own cure. You know what they say – when you want the job done right, you gotta do it yourself. Don’t trust everything doctors tell you.

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    1. I was thinking the same thing about the steroids My spirochetes are in full spiral and they can wipe out anyone with or without other conditions. Without both eastern and western medicine the last seven years might have done me in. Acupuncture, homeopaths, supplements, and Doxy are my heroes. And don’t forget yoga — it saved my life.

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    2. When I first became sick at age nine they tested me for Lyme and it was negative. The symptoms of it didn’t really begin until college so I think thats when I contracted it somehow. But my mom and I are constantly on the lookout for new tests and treatments, and also have one of the best docs in the country so I do trust her..but am always on the lookout for new approaches so I will keep that in mind. Thanks for reading :)

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  5. hang in there Mare. i thought i was man enough to read this a second time couple days later without welling up with tears but I am such a wuss. keep writing your beautiful words. the encouragement you give even to the healthy folks who think they got it rough is monumental. meanwhile pass the kleenex.

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  6. This blog is…indescribable, I’ve never read anything like it. Even during your darkest times, you extend hope to strangers all around the world! Your life IS amazing. Wow….I am in awe.

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    1. Thanks dude! My life doen’t feel amazing at all..but I am happy happy happy if it extends hope or humor or happiness to anyone. That’s all a writer could really want I think. Thanks for reading, and writing. xoxoxo.

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  7. My sweet sweet beautiful Cuz, I am so proud of you for your grace and courage you show despite all the pain you are enduring….no matter how hard it is to see now, just remember nothing ever stays the same for forever, and this too shall pass. I’m praying for you and your speedy return to good health and a life that you deserve. Stay strong babe, xox Lindsay

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    1. Hey Cuz! Thanks for your words..I miss you and the gang! I’ll be back in Louisiana next month..lets party then! (in bed…I’ll have to party from bed…but still..)Thanks for the prayers..I’m hangin in. Love ya!

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  8. You are a GREAT writer and have helped me, the biggest denier, push-past-er, fake-it-til-you-make-it-er, head-strong, ‘See? I can do it just like you’-er, come to terms with my limitations. And it’s been 10 years. YOU’RE the one to do that for me and help me with that!! And then, because I HATE coming to terms with this, yet have never been happier in my life despite this, I pass along your writings to my patients. TEENAGE patients!! They PAY ATTENTION to you!! So, you’re right up there with Taylor Swift’s love life, One Direction and Chlamydia (look it up, it’s awesome), and Justin Bieber in my book!! One question tho- what do you feel like ‘dog/G-d’ is telling you when Monty kills the toy, tosses the stuffing, all for that squeaker?!!? I thought ‘Thou shalt not murder’ – and my dogs, well they are assassins of that which is squeaky… And fluffy…. Ugh.

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    1. Yeah Monty is a mass murderer of squeaky toys but wouldn’t hurt a fly so I think he could still have God status :) I’m glad you’re coming to terms with the illness and it’s limitations. It’s shitty..I know…but good to become proactive about it instead of running from it. Hang it there and I’ll do the same. Thanks for reading!

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  9. mary, i get how you must feel. i’ve had lots of illness in my life, so i can imagine a little of how it must be for you. i’ve been reading you for a while, and in answer to the idea that your “life is stupid,” I would say that because of your exceptional writing skills and candor, you are helping loads of people who suffer with illnesses, to feel less alone and for the time they’re reading at least, BETTER. You’re a bright, funny, and fabulous writer. i’m a fan. and i don’t think i’m alone. hope you start feeling better soon. toni

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  10. Why else was Dog given that name? It was just for us to figure out the meaning, and turn the letters around. I know that when I get depressed from the pain and feel that it’s never-ending, I suddenly hear my St. Bernard snoring, look down at that placid and somewhat silly face, and start to smile. Then I see my Lab/Chow mix with her beautiful eyes, always alert, always looking at me, and I know I’m loved and protected.

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  11. Btw I know this might feel like yet another supplement suggestion, but the last few weeks i have been taking a magnesium supplement and have seen a significant improvement in my CFS and particularly fibro. I know magnesium is quite commonly taken for CFS, so its not just me. Maybe u are already taking, if not its worth a try. Hang in there. Things will get better. Have prayed for you – hope thats ok :) x

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  12. Mary,

    I had no idea. I just happened to notice the link to your blog on twitter and thought “I wonder what my Chava is up to.”

    I wish, as I’m sure many others do, that I could do something to help or that I could offer some words of encouragement that actually make a difference. Sadly all I can do is tell you that I truly believe that, yes, you do have purpose. In fact, I’m sure you have many, but one of those – you make people smile.

    You may not feel like it, but you are a ray of light. Even after all these years I have such great memories of doing Fiddler with you. I loved seeing your infectious smile every day; you always made going to work worth while. What was it… 13 years ago? Even after all that time, thinking about working with you, the fun we had, and your laugh, still brings a smile to my face. I have played Tevye literally hundreds and hundreds of times, with dozens of actresses, but you will always be one of my absolute favorites. You made doing the show a joy.

    All I can offer is positive energy, but I will be sending a ton of that your way. I will always fondly remember working with you. Just thinking about you always makes me smile.

    As you say, keep going.

    Sending lots of positive thoughts and energy your way, “little bird.”

    All my best,

    Lee

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    1. Lee…so good to hear from you. And thank you for your words! I loved doing that show and hanging out with you and the gang. I’ve only done that show with that cast..but I really can’t imagine a better Tevye. You’re the best..in character and in real life. I learned a lot just by being around you. Thank you again for your encouragement and kindness. I’ll always think of you as “Papa” in that hat you used to wear. I’ll give you a call when I run off with a Christian so you can reject me like in the play! :) jk. Love love love,
      Chave

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  13. Hang in there, Mary. God loves you and hasn’t forgotten about you , I’m sure. You sound fortunate enough to have a great family and group of friends around to help you along. So many suffer alone, not just from physical ailments, but mental as well, with no family or friends who care left in their lives. I work as a police officer in a large city and we get so many calls from people who really shouldn’t be dialing 911, but who, I think, just want a person to talk to. I just want to hug em and tell them that it’ll be ok, but I can’t make that sort of promise, unfortunately.

    Trust that I’ve read a couple of your posts in the past and wished you better health and happiness. I’ll continue to do so for you and others. Good luck, I hope things pick up for you soon! Maybe it’s just the winter that is kicking us in the arse.

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  14. Hi Mary ,
    I always think my Georgie was sent to me like an angel from someone somewhere up in Heaven who ive loved and lost. Maybe one of my Grans or Grandads.
    He comforts me, and is my shoulder to cry on, he looks at me so intently and I know he understands my heartache.
    When Im having a very bad pain day (Spinal Joint Disease) and my Husband and Children just don’t know what to do to cheer me up, I go and lay on my bed , George follows laying with me head to head telling me to be strong and all though confusing all this is happening for a reason.
    Your Blog is helping so many others cope with illness, your words are truly inspiring.
    Thinking of you xx
    Victoria

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    1. Thank you for your words..I’m glad you have Georgie. Dogs seem to have an intuitive sense about things that most humans just seem to lack. I know it seems silly to outsiders but Monty is truly my best friend and if I had to go through all this without him..I just don’t know how I’d do it. It’d be a lot less fun, I’ll say that. Thanks for your words and I’ll keep you in my prayers for more good days ahead. Hang in there!

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      1. Hi Mary xx
        George is truly one of a kind, in the day when my husbands at work and my kids are at school its just me an George, he seems to understand my good days and bad days so much and is always ready with slobbery kisses to cheer me up. They really are furry Angels arnt they :)
        Give Monty lots of hugs from me and thankyou for replying Victoia xx

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  15. Girl, you have a great purpose! Although you may feel that you aren’t doing much with the life you have, you encourage, relate and touch the heart of so many people, me included!
    Like Jessica, the thought of Ehlers Danlos Syndrome hit me too when I was reading your post. My children and I have it and it does sound similar-especially being diagnosed at age 9. We think it was the cause of our FM.
    Keep going! Sometimes that is all we can do. God loves you, and so do I.

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  16. Im so sorry you feel this bad Mary. I love reading your blog – it is so funny and inspiring. I also have CFS, and it is a cruel illness. Like you say, sometimes you feel like you are watching the world go by – like being in a goldfish bowl. It is so frustrating that our bodies just will not do what we want them to do. I sympathise with your thoughts of ending it – more than you know. But as you say, there is something inside us – a spark of something (stubborness perhaps) – that just keeps holding on. Here is a song by Selah that has recently helped me, and might give you a little help too. The lyrics are so apt for cfs and fibro, I think. Im not a hugely strong believer by any means, but my little mustard seed gets me by sometimes. ((hugs))

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  17. As I lay in my bed, sleeping, not sleeping, full of pain, or not, crying from everything, I thank you. My Jazzy was just like Monty, intrusive little bitch, now my little girlie Cuda who is 9 seems to think its her job, she never dd it before today. Thanks. No suicide for me either. Just gotta wait and see.

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  18. I’ve never commented on your blog before. I’ve been reading it for a while. I can relate, as I’m 22 with Ehlers-Danlos syndrome. Maybe you should look that up, I’m not suggesting that you have it, but it can be misdiagnosed as fibromyalgia. You are a really good writer. Stay strong!

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