Guess What? It Get’s Better.

It was on this day one year ago that everything changed. And the change began with everything falling apart. One by one, the “solids” in my life unraveled like lazy yarn. It all started on New Years Eve, 2010.

My body was in what I like to call “Fail Mode” and I was at my parents house, feeling isolated and crappy. I was convincing myself that by that night I would feel well enough to leave, join the world in the celebration of a New Year and maybe even drink some champagne. Hah. Did. Not. Happen. By 5 pm I was sending out a very familiar text: “Sorry dude, I feel terrible. Won’t be able to make it…” If I had a nickel for every time I’ve said that phrase, well, you know.

Happy New Year! Oh wait. My life sucks.

That night I finally had a bit of a mental breakdown. My parents stayed up until midnight. At 12 they kissed and I looked down and saw Monty, so I kissed him. My new years kiss was with my dog. GREAT. I kept reminding myself that it was only a night, it wouldn’t last. By tomorrow, the party I was missing would be over, and so would all of this. For some reason, my mom couldn’t sleep that night and neither could I. I walked out into the living room around 2 am, saw her watching TV, and lost my shit. Through the tears I finally admitted to her how worried I was about my life. I hardly had a social life anymore. I was barely making it to work every day. Traveling was too hard on me so I had basically stopped. It felt like all I did was work and sleep. I had nothing left for anything else. Nothing left for the ‘good parts.’ Nights and weekends were often spent in bed, catching up. I felt out of control. The illness was in control, and that scared me. My mom counseled me through it the way she would continue to do for the next year. She reminded me I was young, that this moment wasn’t forever, and there was still a lot of possibility if I could only hang on. She was right. But hanging on is the hardest thing to do. At times this year it felt like I was sinking, and couldn’t see the bottom or the top.

I felt like the "Help! I've Fallen and I Can't Get Up" lady

New Years Day I was no better. Everything hurt. I was heavy, dizzy, and nauseous. I would be stationary but feel carsick. Walking became hard. Too hard. I continued to get worse until Monday when I woke up and felt too fatigued to walk to the bathroom. That’s when I called the parents, they came to pick me up, and the gradual “move back in with the parents” began. Each day it became painfully more clear that I wouldn’t be able to live by myself anymore. It didn’t bother me so much at that point. I was too sick for pride.

I remember when my sister came to help out at the end of January and I told her I wished there was a fast forward button. “I just want it to be over.” She sat with me, said she wished for one too, but told me the truth. “It’s gonna be hard Mare, but we’ll get through it.” And now I look at the date and see, I made it. The crappiest year of my life, is about to be over. Hells yeah! Sometimes I wish I could bundle 2011 up in a big bowl of lint and burn it to nothing. The truth of the matter is it’s all theoretical anyway. January 1st is just the day after December 31st. It doesn’t mean anything, really. But our perspective changes. We make new plans, pledges, and goals in hopes for not a new life, but a better life. Even though it is just another year, and there’s a possibility it could be even worse than 2011, I am a romantic for the capability of change. And a new year holds great possibilities. It’s like buying a fresh new notebook. You don’t know what will fill the pages, but the prospect on the blankness excites you.

The truth is it’s about to be 2012 and my struggle is going to continue. I’m not all better. I am still jobless, still living with my parents, and struggling to maintain relationships. The challenges I faced in 2011 are still going to be there. My hope is though, that I’ve learned and suffered enough to manage what’s in front of me. Like my mom says, “Just do today.” I hope that I continue to grow, that I cherish what I have and not long for what I don’t. I’m looking at 2012 as the year of possibility. My only job is to stay open to it. And I think I can handle that. I think!

One of the best moments in 2011 occurred in a bathroom stall on my birthday. My friend Kaitlin and I walked to an ice cream shop on Magazine street. In the bathroom stall there were all kinds of scribblings and drawings on the wall, but my eyes went straight to a phrase written in green. Someone wrote this: “It gets better. I promise.” I immediately sensed my dad. Of course my dad didn’t write it. It was probably some stoner kid feeling wildly optimistic. But I think it was from him that I saw it. I felt it. And I felt better. I walked out holding on to the energy of the phrase. Because that’s what I felt from it; energy. It’s like the energy in saying “I’m going to die one day” or “I love you” for the first time. It’s wild. But it’s real.

Anyway, I wanted to share the dark times of this year but also the moments of relief. Because it wasn’t only grand gestures, it was also the very small things this year that carried me. Things as small as writing on a bathroom wall. In the moments where I was hanging on by a thread, I would grab hold of anything to get me out. Sometimes the only thing to concentrate on was my breath. So I’d start there. The most important thing to remember is that every moment passes. Today will be tomorrow soon. Tomorrow will be next month, and alas, the year will end. This year began with everything falling apart. The new year begins with everything reassembling itself. That’s the thing about things falling apart; they always get put back together, stronger than they once were.

Health, Happiness, and It Does Gets Better. I promise.

Happy New Year!

38 thoughts on “Guess What? It Get’s Better.

  1. “It felt like all I did was work and sleep. I had nothing left for anything else. Nothing left for the ‘good parts.’”

    This describes the first eight months of 2011 for me. I finally quit working full time last August, two years after I first got sick, and started a consulting business so that I could control my working hours enough to have something left over for the good parts.

    Thank you for this post! May 2012 be better for all of us!

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  2. Maybe this is exactly what you’re supposed to be doing. No, it’s not a job, but you could get sponsors with this kind of following. At least it would be an income. This post certainly inspired me.

    I have FMS and I have rarely ever had the opportunity to slow down. I usually just crash on the weekends and hope I can hold on during the week. I push myself far harder than I should and I probably suffer for it.

    Last year crashed for me too, but in a completely different way. Now I’m rebuilding some simulance of a life that bears little resemblance to what there was before. It’s by far the hardest thing I’ve ever done and sometimes I just wanna yell at (insert deity here) and say “Hey! I wish you didn’t have so much faith in me! I’m going to fall apart soon if you keep sending me these struggles!”

    So good riddance to 2011. Here’s to 2012! A new beginning. New hope! New future!!!
    Blessings

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  3. First, you write beautifully, with warmth and wit and candour and insight.
    I had a bit of a glum time of it on new years eve myself – I think part of the problem is the great overwhelming pressure one feels to have fun, to be filled with hope and postivity and desire for the future. Ever the contrarian, my brain seizes on occasions like this as a chance to turn on the gloom tap. It was only in the days afterward that I thought anything along the lines of ‘oh, well, I should probably make an effort to have a nice time this year…’

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  4. Mary, you are such an awesome person. Every post you’ve written about being sick really makes me feel a little less alone. This New Years I was in London. Ontop of being really sick with the same sort of illnesses you have, my bag was stolen and my vicodin was inside. So I stayed home, sulky and in pain, and pissed off because my passport and iphone were in my bag. Even though vicodin makes me extremely sick- as do most painkillers I’ve been given- it’s all I have, and it was horrible. A few days later, a friend gave me some tramadol. It’s a painkiller not sold in the USA, but sold in mexico, canada, the UK etc. It was like someone gave me a new life. I didn’t have a single side effect, and granted, I was not 100%, but I went from like 20% to 80% within an hour and a half. So, even though my bag was stolen, even though I had a shitty New Years, even though I just spent 1/8 of my savings buying a new iphone, I just found a medicine that really, really helps with the pain and doesn’t make me dizzy, or sleepy, or anything. It wasn’t like I could go running down the street screaming I’m cured… but I was able to stand in line at customs for over an hour without any pain. I was able to put on heels without any pain. I was able to walk around for hours and sit in hard chairs and do all the little things I’ve had to give up or be careful of. I just wanted to let you know, since we have the same disease, in case it helps you too– as I would imagine you’ve never tried it since it’s not given out here in the states. I don’t know how long it will work for, for me; I’ve only taken it for five days– but every day I take it I wake up in the morning and I don’t have to coach myself out of bed from the pain. I can walk down the street and not have my eyes tear from the agony of moving my ankles. I can pretty much function to a decent level of normal. I don’t know if it will work for you, or if you’re content on the medications you’re on, but just in case, I wanted to share the information, and agree with you that it can get better. If you try it I really hope things get better for you too. Much love and happy new year! ~Siddhi

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    1. Just letting you know that tramadol (Ultram) is prescribed in the United States and has been for years. It is quite frequently used. My boyfriend takes it for nerve damage in his hand. It does work quite well and is non narcotic, which is a bonus.

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  5. Mary, I just wanted to let you know that I’m still rooting for you and enjoying reading your blog from time to time. I watched something interesting recently called “The Living Matrix.” I don’t know if it would interest you, but there was an amazing story of a lady with fibromyalgia.

    At any rate, all my best to you in 2012!

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  6. I can so empathise. Though this is only year 3 for me, fibro wise. It’s getting worse but then I am trying to remain in full time work (my bosses aren’t happy though with my sporadic attendances) as well as caring for my elderly parents. I have no idea how I do it and there are times when I fall apart completely and it’s only a couple of really good friends – who don’t mind the “I can’t talk now, I have to lie down” or the “sorry, I can’t make lunch/dinner/cinema etc” – who keep me going & keep me supplied with duct tape.

    I’m trying for voluntary severance so that at least I’ll have some money to pay the biggest bills off and then hope to find a wee part-time job because I need to be able to get out the house.

    But, with limbs refusing to work sometimes, with an inability to take certain painkillers 9due to previous addiction issues) and with eyesight now starting to not want to function…. who knows – time’ll tell I suppose.

    Keep up the good writing! You’re not alone!

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  7. Yesterday was my 29th birthday, and I was really sad. I decided to be sadistic, so I wrote down everything I’ve done for the past 10 years. 10 years ago, I got sick, had to leave my college and move home (to the local college) as well. Eventually I got “fibro.” Year 19 literally started with Fibro. I’ve gained lost friends, survived a relationship during which I was told that “no one would deal with [me] and [my] pain,” lived in six different places, two different states, gained a Bachelors, Masters, and Doctorate degree, got married, gained several pets I liken to your Monty post, and have a job I love. Yet, the sickness is the only thing that remained the same (except for my sweatpants collection), for over a decade. It seems to be getting worse, and I feel stuck. I am terrified of pregnancy without my medication (I am also the sole bread-winner), and WebMD said women with Fibromyalgia have the “worst 10 month experience” while pregnant. That’s WEBMD! So, I am waiting for the better. Everything has fallen into place except the thing that I live in every year, every month, every week, day, hour, minute, and second… My body does not get better, it gets worse! 363 days until my 30’s… *Insert long, immature tongue-spitting here pththththththththth

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  8. Happy New Year… here’s hoping! I’m a Fibro blogger too though my blog appears to have been hijacked by my falling in love. I still feel like crap most of the time but now I have someone to laugh about it with me! 2012 is gonna rock!

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  9. Just left an appt. with yet another doctor who can’t explain why I’ve had a fever and excessive joint pain for the past 12 weeks (on top of the usual fibro pain/exhaustion). Thanks for this post because the only hope I have left right now is the tattoo of the word that I got last week…

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  10. Heya,
    Having family is everything with this illness, I am so, so, happy that even while your body is in fail mode, your heart is being held together by that excellent crew you have. No one could write such a lovely blog without a lovely heart, so I would like to salute them for helping you to bring all this crap-o-la to light.

    This is year 20 for me. My body fail started around 20 years old (after 2 years of chemo for leukemia, so yeah. I win). That’s a half life right there.

    (And no, it’s not possible that I’m that frickin’ old, except that it is).

    There is ME/CFS treatment that helps, if you can afford it. My family are assholes, so I didn’t really start getting better until I met a dude who had the cojones (and who also thinks that I’m cute enough) to live-with while I figured shit out. That was 4 years ago. Turns out when he’s not being my hero and saving me from a life of certain sick-doom he is just a regular dude who watches too much hockey and thinks the toilet paper changes itself. But he still clean the cat litter so my endebtedness is pretty much locked in now.

    But yeah, better is possible. Right-o.

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  11. I love your thinking manner. So inspiring. You have so much wisdom and courage, your writing is so well crafted.
    wish a Happy Happy new year.

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  12. Its the small things indeed… my favorite line was “That’s the thing about things falling apart; they always get put back together, stronger than they once were.” So true! Stay postive :)

    happy new year!

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  13. Hi Mary,
    In case you ever wonder if anyone who reads your posts can really understand what you have to say and some or all of what you feel, I can tell you by my experience “yes.”
    This year my mother had a major stroke on November 18th, my birthday. She passed away on Christmas eve and I will never be able to talk to her or see her again. Even though I am older than you, I still experienced some of the same feelings that you have expressed in your post. My mother was a great lady and she was a tough individual. She fought with Alzheimer’s disease for all of fourteen years and not once did she complain. During that same period of time she had to endure radical surgery for breast cancer. Never did she complain. I believe that she did that to save us from suffering about her and her terrible illness. This past Friday we buried my mother and as I stood there crying for her and for people with similar afflictions, I thought of the many people like you who by your examples make all of us that much braver and more understanding of what can be done to help our loved ones and what we need to keep us strong in our efforts to help others who otherwise would be lost and left without hope of at least getting better in their struggles with sickness and disease. You have conveyed to me a great measure of self determination to understand what has taken place and to know that what I was able to do for my mother, so that she could face with dignity and strength by what she so undeservedly was being devastated. Whenever I pray for my mother, I will also pray for you and others like you who give us hope where there would otherwise be nothing but failed attempts at knowing what other families like ours face in the cold contemptuous world of sickness and possible final efforts at just trying to barely exist.

    Hector de la Concha

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  14. Did you seriously just describe my entire year? Except last NYE was the one bright spot of hope where I actually thought I was about to get better. Not. But, I totally feel you. Here’s wishing us both a healthier 2012!

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  15. having fibromyalgia as well, I totally understand. And I know that doesn’t help one bit. My awful year wasn’t this year, but it wasn’t great by any means. The inspiration you provide here is incredible. I cried when I read this post because I do understand. And I do have the exact same fears. Thank you for sharing. Have a remarkable new year, and I look forward to more posts!

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  16. Very encouraging. I needed to read this. I wouldn’t say 2011 was as difficult for me as it was for you but it sure has taken me on a ride.

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  17. Just started reading your blog.
    This is a wonderful post and just what I needed to start the new year.
    I graduated from college last June with a degree in journalism and have been unable to find a job since. I’ve moved back home with my parents, and my boyfriend moved to Hawaii for 4yrs. It’s been rough. So many changes, and I feel like an unproductive disappointment everyday.
    I really do hope it gets better.
    HNY to you.

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  18. I love your blog–it’s really inspiring. I have to admit I found it after your one post went viral and some guy I barely know posted it on Facebook. But after I read that, I read all of your other posts and have since added your blog to my Google Reader! Knowing that someone else gets it is a great comfort, and I am so glad I have your blog to turn to in times of need. I hope your 2012 brings you so many good things that all the bad will fade away. You’re a strong woman!

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  19. I too, believe that Better is Possible – enough to give the name to my blog. My heart goes out to you. You sound like a clever, bright, witty young lady. It’s evident you have a family that loves you. The journey can be so difficult, almost impossible but you are doing it. Love your mom’s advice…’Just do today’
    Hang in there. You are worth it. It is possible!
    Carol

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  20. Great inspirational post Mary! Thanks for being you, an4 for sharing your stories with the rest of.us. Happy New Year! I hope this year brings you much healing and happy times. You’re an amazing young woman. :)

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  21. I feel bad saying this, but other than having some really shitty back problems, I am in usually pretty good health. But your post brought me back to when I was 25 and I had a dear friend who died in a tragic car accident. I literally felt like my heart would never stop hurting. And then my Dad called and said to me “This too shall pass.”. It has become my mantra for the really crappy things that might happen on random days, and it’s become my mantra because it is true. I hope 2012 brings you some really good days at the park with your fabulous doggie.

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  22. dude. i just got up. it’s 5:12 in the morning. hvent gotten my cfirst cup of coffee yet. and now i’m crying. and its all your fault. ha!
    it gets better. i promise.

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  23. As I write it, it’s like 4 am where you live. Beginning of the end of 2011. The perseverance and tenacity you have shown in the face of such anguish is remarkable. I do give credit to your (extremely) supporting family and friends but foremost I salute thee. You are like an icon of courage not only for yourself but for many of your readers. I wish you all the best in the year 2012 and may there be more hope and better still, a cure. Who knows. After all penicillin was also discovered one day. Keep it up the other Gelpi. You are star material and shine on the world, it needs you.

    Afaq.

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