Wednesday, July 21, 2010

As We Are


If you look to the right, you'll see the various labels I file my posts under - one of which is called "Silver Linings." It's obvious by now that I typically search them out. They help me make sense of the pain I'm consistently facing, the dramatic ups and downs of this disease, and typically I can find them without much effort. Monday was not one of those days. It's important not to let the disease beat us down, but it's also imperative to be realistic. We can't waste precious energy or spoons by trying to play Pollyanna because let's face it - sometimes, in the wake of great pain, it can be downright impossible to stay positive in our own heads. Sometimes we've got to just....be.

If you follow my blog, you can easily see the erratic nature of Spondylitis. So much can change from post to post and, while one day I might be climbing the hills of Italy, the next I might be struggling to walk at all. I've pushed it lately with various visits and trips, but on Monday and part of Tuesday I was in the kind of pain that I forgot was possible. After a restless night, I woke up startled and actually scared by how I was feeling.  I could barely move and it truly felt as if I was being stabbed in every joint and muscle. At the same time, I could feel each vertebrae and rib aching and burning so deeply that it was hard to breathe. The nature of my pain has changed over these past couple of years. It has never been this intense and, although I'm quite familiar with pain, I just can't ignore or assimilate to this. In fact, I refuse to. It's not easy to admit, but this kind of pain is often accompanied by a waterfall of dark thoughts: How can I even get dressed today, let alone be a social worker? How can I possibly be a successful wife or mother? How can I stand this pain for the rest of my life? What if I just become a burden to those I love? 

My dad was just leaving for work when I made my way downstairs. He and my mom are extremely talented at reading my face when I'm in pain...I'm pretty sure it's a "parent thing." He sat down with me, reminding me that I've had very bad periods before and that I've always gotten through them. He told me that it's easy to feel like it's permanent when you're in the midst of suffering and he made sure I knew how strong I was - that I also have great love and support to get me through the harder times in my life. I told him the fears that my mind indulges on days like that and he urged me not to get too far ahead of myself. That sort of worrying can also increase inflammation, so of course he's right. It's got to be one step at a time...one stiff-legged step at a time. It's the only way. He also reminded me that a big thunderstorm was on its way, so at least there was a reason for the dramatic shift in my body.

I believe I can be doing better than this and I'm going to fight for it. The truth is, though, no matter what happens I'm endlessly lucky to have this kind of love in my life: the family that would go to the ends of the earth, the boyfriend who would do the same, and incredible friends who will just listen and lighten the load. They remind me that I don't need to put on a show and, as the disease takes its course, this is an invaluable gift. Chronic illness is rough. Sometimes we just need to let ourselves be less than positive - to know it's okay to come as we are.


On these days...on days when it's a struggle to see the reason behind the illness...what keeps you grounded and strong? What keeps you going? 

Love,
Maya

16 comments:

  1. You are absolutely correct Maya. Silver linings are so important to be successful with chronic illness. It is okay to be sad or upset about our conditions, but we should not let self-pity consume us. Living RA and fibromyalgia, the erratic nature of my conditions is also evident in my posts as well. I am glad that you have support system that reminds you when you need it most. It is so important. When I am having one of those days, all I have to do is see the smiles on my children and that silver lining is right there staring me in the face. We all need reminders every now and then – sometimes they are obvious and sometimes not, but those silver linings are always there. We just have to look for that.

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  2. my dear maya, i am sorry you are in this much physical and emotional pain. know that you are not alone. you are a silver lining to my pain. if not for you, i might have dropped my passion for social work. i might have given up my dreams of traveling. what you are doing today; sharing your feelings so openly and honestly, keeps me going. no matter what direction you life and disease may take, you already matter very much in this world. xoxo

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  3. Maya, your family and friends are beautiful. You are one lucky girl. I hope this pain soon leaves you and you are out doing all that you love soon.

    What keeps me grounded? The same as you. My family and friends. My 12 year old daughter will remind me of the fun things we did on the days I felt better and my 14 year old son will look for signs that I need extra help and will be there without asking. My husband will hold me and make me laugh. Support comes from friends when they listen and ask how I am doing. Wow! We are both lucky girls.

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  4. Thank you all so much for your ongoing support of my blog, but most of all of me. Your words were enough to make me feel less alone during a painful week and push me out of the slump. It means the world to know I've connected with friends like you and to know there are people that really do "get it." Love always...

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  5. so sorry to hear that this week has been so rough. but it will get better. that's the one good thing about having ups and downs, right? when you are at your lowest, the only way to go is up.

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  6. I can understand what you are going thru Maya. I am suffering from Seronegative Spondyloarthropathy and I experienced the most intense pain and inflammation ever at every possible joint and muscle, day before yesterday. It's really a struggle to tell our mind that it'll be better, we can bear this pain. The day I'm very happy is the day the pain is bearable. Just indulge in things you love to do. And to have such a lovely family is the best part! Take care. Will follow ur blog and stay in touch.

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  7. Thanks Jodi :) seeing you made the week much better though. You're right...I have to concentrate on the eventual "up."

    Anuradha - I am so glad you've found my blog and thank you from the bottom of heart for your kind message. I'm so sorry to hear that you go through the same things and I'm sending you pain-free vibes. I would love if you follow my blog and kept in touch -connecting with people like you is why I started this blog in the first place. Take care and talk to you soon :)

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  8. A little late responding, but I completely understand what you are going through. I am 32 with spondylitis. I am also a wife, a mother to a super active 4 year old boy and a full time nursing student. Some days are a joy and some days are a struggle.

    Your questions in the second paragraph I ask myself everyday... but somehow it all works out.

    As an RN student I have 13 hour clinical days, which are grueling, in addition to lecture and homework.
    At home I come home to a little boy who wants to attention and to play non-stop.
    Somehow it all works out and we have learned to push through the pain to achieve our goals. My school binder is covered with pictures of my son and when I think I can't I go on, I look at those pictures and talk my self into another day so that he can have a better life.
    Find that thing that motivates you and focus on it to get through.
    I also schedule sleep/down time on my calendar. --- my classmates think I am nuts when they see my calendar.

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  9. Keep fighting, that's what you'll do. You'll be a great social worker. Don't listen to NOs and follow your heart. Always remember to intersperse activity with rest so you don't get run down, but really I think it's finding that impossible medium, you know?

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  10. Katrina, thank you so much for your thoughtful response. You are truly an inspiration to me. To know all that you have accomplished is possible for me means an enormous amount. You're right that somehow it all seems to work, despite the pain, and friends that really get it (like you) help that happen. I love that you schedule sleep/down time because it's 100% necessary. I'm so glad to have connected - please stay in touch :)

    Amanda, thanks so much for stopping by and for your awesome support. I'm trying to follow my heart every day, but my brain sometimes gets in the way when I'm in pain. Do you suffer from an illness yourself? You're very insightful - I completely agree the medium should be our goal.

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  11. Hi Maya, take care, it is awesome that you have a great support system. I have FM, it is difficult for me to pace myself sometimes.

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  12. KD, thanks very much. There are many similarities between Spondylitis, FM and mostly all auto-immune disease - it's comforting to know there are so many people who truly "get it." I'm wishing you pain-free days and please come back to my blog soon :)

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  13. Beautifully written, and I know those days! I'm not sure really what gets me through those days, but there is a strength inside us that is stronger than a superhero, bigger than a mountain, and more vast than the fields in the midwest! Yet it is small enough to fit inside of us! How, why, and where it comes from--can't say, but we have to have it or we would never survive. God bless you, Maya! I believe it is so important for people like us to blog, to get the word out to others like us!!!

    Read my blog: I Already Gave My Right Arm To Be Ambidextrous!

    http://gavertarm2bambidextrous.blogspot.com/

    Blessings,
    Dana

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  14. Dana, thank you so much! you said it very well and I agree with you that there is superhuman strength inside us. In retrospect, it's a pretty exciting thing to recognize, but sometimes in the midst of great pain, it's hard to see. So thank you for the reminder. Your words mean a lot and I'm thrilled that you shared your blog with me. I just delved into it and I'm really enjoying it so far. I'm glad we've connected!

    All my best,
    Maya

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  15. I'm here via the Chronic Babe Carnival, and I just wanted to say that I understand how bad bad days can get, and how it can be overwhelming. In the midst of them, it's hard not to get stuck. I'm so glad you had your dad there for support, and that you were able to see that things DO get better.

    Hope you are feeling as well as possible today!

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  16. Juliana Joie, Lover of the WorldAugust 01, 2010

    Thank you so much for sharing your story, Maya. I am so glad your parents can read you well and support you.

    I ground myself in many ways. One is very playful: I throw a therapeutic temper tantrum. I grab everything I love--books, art supplies, music, stuffed animals--and spend the day in bed playing with them and resting as my body wishes.

    Other times a mindfulness or pure love meditation will remind me of why I am here and how I want to use the energy I have today.

    I'm very dedicated to my work of helping people create lives they love and finishing my book on my experience of life with lupus, scleroderma, and fibromyalgia and what I've learned from this trifecta of intense diagnoses.

    Today, in fact, was a higher-fever, lower-energy day. So I've stayed home to plan and prepare for my first day back to work tomorrow after a megaflare.

    I hope everyone's feeling as-well-as-possible and loving their life, however their body is doing.

    Love,
    Juliana

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