Whining. My three year old niece recently discovered its merits. And while I was getting ready for this afternoon, and procrastinating making muffins, I felt like I sure am doing a bit too much whining. I don't mean to be, and I certainly don't feel like it makes things much better, so I hope I haven't been misunderstood. As I looked back at my posts, they are often on the bad days, and that isn't quite by design. Its more out of a desire to try to give insight to something that if I didn't experience myself I truly do not know if I would understand.
Not too long ago I was reading a short blurb about the author Laura Hillenbrand and though she rarely speaks of her chronic fatigue, rather focusing on writing about other's struggles, she was describing her situation. In one article she described her bedroom where she keeps a mini refrig so that if she can't get downstairs she has what she needs by her bed. And me, me of all people, actually thought to myself - seriously! And I couldn't believe myself, how could I not comprehend that? In an article Ms. Hillenbrand had published for the New Yorker where she shares her journey of chronic fatigue she also dismissed any forms of "alternative" therapies after having a bad experience with one practitioner. That time again, I found myself ready google Ms. Hillenbrand's address and say, have you tried hydrotherapy, nutrient IV's, testing your blood levels for staph or strep? Have you had your parathyroid levels tested? How about blood photopheris? And I caught myself, Laura Hillenbrand, New York Times Best Selling author, is obviously a smart woman. She has managed to write two novels, in spite of this illness. And I get it, I see someone, whom I believe is "worse" off than myself - which is somewhat ironic considering her success. And even I living with this have that knee jerk reaction to find her a solution.
This is why I "whine". Because I know how hard it must be for someone outside looking in to understand this enigma of an illness, considering most days I don't even get it myself. And although, I do try as someone said in a facebook post today, quite well, that remember the holidays are difficult for many, so make the best out of your situation, it made me pause, I hope those reading understand that I do most days the best I can -
http://www.cfids-cab.org/MESA/Hillenbrand.html
http://www.usatoday.com/life/books/news/2010-11-10-hillenbrand10_CV_N.htm
The first is Laura's article from the New Yorker magazine, the second an eye opening interview for USA Today. In it she states, I have an illness that I can not defeat - here is where we differ, but I understand, empathize, and respect the choices she has made to learn to live with this illness. But Laura, if you care to chat...I know, I know. So, I couldn't resist, I posted info on her Facebook page and a comment page on her Unbroken page.
Saturday, December 24, 2011
Getting Through...
It's a phrase you hear a lot of this time of year, "getting through the holidays" - it means different things to different people. Last night as I was lying in bed that phrase kept going through my head like a needle stuck in a record player, skipping and skipping, again and again. How my life has changed over the past years, it has been a subtle shift that has slowly become an unwanted mantra that I hadn't fully comprehended I had adopted - "just get through...fill in the blank..."
This entire holiday season I have had one goal, one finish line - make it through Christmas Eve and Christmas. This has meant missing many other scheduled events that in years past I would have been flitting from one thing to the next. Christmas parties, children's plays, and even shopping which the majority has been done online. At the beginning of the week my mom and I had planned to go to a particular boutique for me to get some pants, three days in a row the energy just wasn't there. Then finally on Thursday it was a reprieve from the envelope of fatigue that had set in. On Wednesday night, I had not been able to make a dinner out with a few friends, my thoughtful friend Sue when sending me the message noted, just even try for a quick stop in. My return message was "if there is a word out there that means more tired, than tired, that is how I feel" Its been a long time since that type of fatigue set in, as you are lying in bed and you literally can not move even your pinky finger and this disbelief goes through your mind. How is it possible to feel this fatigued from doing nothing? But like I said, Thursday was a welcome hiatus, but then Friday came with a bang. It just wouldn't give. And in my mind, I am thinking, really? Its the day before Christmas Eve, all the "preparation" and here I am at 2pm staring out the window in bed. I am disgusted, because the sun is shining, and at the end of December in Wisconsin, the window of sun is at a minimum. I tell myself, if you close your eyes now, you will wake up to darkness - and to be honest , I don't want to wake up to darkness. But I can't fight it, I can barely move positions despite my hip joint being sore from laying on my side. I force up at 6 pm, and think - just dinner and then bed. Two tasks, dinner, bed, dinner, bed, dinner and bed.
Back in bed, my eyes heavily closed, I am transported back to the Christmas's of my childhood, I remember my sister, always the early riser, pulling me out of bed. She's five years younger, and has always been a morning person - me not so much. I would plea for another five minutes of sleep, partly because I was tired, but also because I knew once we went downstairs the anticipation was over and I wanted to hold onto Christmas Eve for a few more minutes. I have always been extremely lucky to never have been disappointed from Santa. And as I lay in bed last night, feeling like someone had shackled invisible weights on my arms and legs, I ached for that excitement of the day. Not just Christmas, but year round.
In my "previous" life, I never tried to "get through" something, unless it was something you needed to, like the dentist, or a funeral. But it all seemed crystal clear, that has been what this chronic condition has turned me into, someone who "gets through" even the fun stuff. I have always loved weddings, and birthdays, parades, not so much - any get reason to get together with friends or go out for drinks. Now all those wonderful events have been lumped together as something to get through.
Its a shift in thinking I hadn't even consciously been aware of that I was doing. I know the holidays for many individuals seems to magnify both the good and the bad in our lives. People out there, try to get through the heartache of missing loved ones, financial hardships, or perhaps being alone, while you see images of others that are not. This year, though it may not be the last of getting through, the holidays, I hope it marks the end of getting through the day.
I leave for Phoenix January 10th and I feel like I am doubling down in Vegas. Throwing all my hope, all my chips in one basket - that this works. To anyone out there, getting through - I am trying myself to stop that mindset, and practice accepting where I am at, because while getting through works, second by second, minute by minute, hour by hour or day to day - its sure not as Merry.
This entire holiday season I have had one goal, one finish line - make it through Christmas Eve and Christmas. This has meant missing many other scheduled events that in years past I would have been flitting from one thing to the next. Christmas parties, children's plays, and even shopping which the majority has been done online. At the beginning of the week my mom and I had planned to go to a particular boutique for me to get some pants, three days in a row the energy just wasn't there. Then finally on Thursday it was a reprieve from the envelope of fatigue that had set in. On Wednesday night, I had not been able to make a dinner out with a few friends, my thoughtful friend Sue when sending me the message noted, just even try for a quick stop in. My return message was "if there is a word out there that means more tired, than tired, that is how I feel" Its been a long time since that type of fatigue set in, as you are lying in bed and you literally can not move even your pinky finger and this disbelief goes through your mind. How is it possible to feel this fatigued from doing nothing? But like I said, Thursday was a welcome hiatus, but then Friday came with a bang. It just wouldn't give. And in my mind, I am thinking, really? Its the day before Christmas Eve, all the "preparation" and here I am at 2pm staring out the window in bed. I am disgusted, because the sun is shining, and at the end of December in Wisconsin, the window of sun is at a minimum. I tell myself, if you close your eyes now, you will wake up to darkness - and to be honest , I don't want to wake up to darkness. But I can't fight it, I can barely move positions despite my hip joint being sore from laying on my side. I force up at 6 pm, and think - just dinner and then bed. Two tasks, dinner, bed, dinner, bed, dinner and bed.
Back in bed, my eyes heavily closed, I am transported back to the Christmas's of my childhood, I remember my sister, always the early riser, pulling me out of bed. She's five years younger, and has always been a morning person - me not so much. I would plea for another five minutes of sleep, partly because I was tired, but also because I knew once we went downstairs the anticipation was over and I wanted to hold onto Christmas Eve for a few more minutes. I have always been extremely lucky to never have been disappointed from Santa. And as I lay in bed last night, feeling like someone had shackled invisible weights on my arms and legs, I ached for that excitement of the day. Not just Christmas, but year round.
In my "previous" life, I never tried to "get through" something, unless it was something you needed to, like the dentist, or a funeral. But it all seemed crystal clear, that has been what this chronic condition has turned me into, someone who "gets through" even the fun stuff. I have always loved weddings, and birthdays, parades, not so much - any get reason to get together with friends or go out for drinks. Now all those wonderful events have been lumped together as something to get through.
Its a shift in thinking I hadn't even consciously been aware of that I was doing. I know the holidays for many individuals seems to magnify both the good and the bad in our lives. People out there, try to get through the heartache of missing loved ones, financial hardships, or perhaps being alone, while you see images of others that are not. This year, though it may not be the last of getting through, the holidays, I hope it marks the end of getting through the day.
I leave for Phoenix January 10th and I feel like I am doubling down in Vegas. Throwing all my hope, all my chips in one basket - that this works. To anyone out there, getting through - I am trying myself to stop that mindset, and practice accepting where I am at, because while getting through works, second by second, minute by minute, hour by hour or day to day - its sure not as Merry.
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