My Day is Coming
Nessie, one of my fellow Chronic Babes - and a fellow blogger - shared this verse on
her blog today...
God will let you laugh again. You’ll raise the roof with shouts of joy.
Job 8.21
The truth in those words just cut straight to my core tonight. My eyes immediately filled up with tears - tears of hope and of longing. Because I believe in my heart that my day is coming. And I believe that it's coming SOON.
Labels: Arthritis/Fibromyalgia, Chronic Babe, Church the Universe and Everything
In Search of a Merry Christmas
Part of the Chronic Babe Blog Carnival. Click here to read the other submissions!
Every year around this time, I resolve to make this holiday season better than the last one. For me, ‘better’ is defined as simpler, more restful, more peaceful, less stressful, and just plain HAPPIER.
It’s an ongoing battle - one that’s intensified by my Type A personality, my extreme love of Christmas, and my chronic illnesses. Three years ago, I married a nurse with a completely ridiculous (and utterly unpredictable) holiday work schedule. Two years ago, we threw a baby into the mix.
FA LA LA LA LA.
It sounds like a recipe for disaster, doesn’t it? But the good news is that I’m getting better every year. And the even better news is that I’m going to share some of my ‘little keys to success’ with you right now.
Plan ahead.
I can’t stress this one enough. The farther ahead you plan, the more options you have - and the better you can pace yourself. I’m doing more and more of my holiday shopping online and it’s awesome. I wrap it all a few gifts at a time during evenings when I’m feeling good - and by Christmas, it’s all done. Without some planning, I end up stressing myself out, which ends up making my chronic illnesses worse, which means that I don’t get anything done at all (or even if I do, I’m not enjoying it). It’s a lesson that was learned the hard way. More than once. But like I said, I’m getting better :)
Keep it simple.
A friend recently sent me a link to
this article about the gifts we can give our children. It’s SO TRUE that my best holiday memories have nothing to do with gifts and everything to do with the people I love. Every year, we find new ways to streamline our holidays. This year, Geoff + I are taking a trip together and skipping a gift exchange. And I have a few friends who I plan special evenings out (or in) with in lieu of presents. The best part is that these ‘presence’ presents don’t have to happen right at Christmas. Schedule them for January and February, when you have the energy to really enjoy them.
Choose realistic priorities (and then say NO).
I’m never going to make it to every Christmas party and event. And not everyone will always understand why. You know what? I think I can finally say that it’s okay. My priority during this time is myself and my little family - my husband and my daughter. Everything and everyone else is a bonus.
Focus on people.
Look for ways to turn chores you are dreading into quality time with people you love. This year, I did a bunch of my grocery shopping with a friend. We hit up Starbucks first and had a blast. I do all of my holiday baking with others too - one day with my mom and my sister and one day with a friend. When the things on your ‘to do’ list become less about things and more about people, I promise they will start to feel less stressful.
Don’t get hung up on the details.
My family’s most memorable Christmas was actually the year we had to throw all our traditions out the window and were unexpectedly snowed in at a friend’s house. I think about that a lot when I’m stressing about everything that needs to get done - because there are actually very few things that NEED to get done.
Keep doing what’s working.
The holidays won’t be any fun for anyone if I end up flat in bed - or in the hospital. Now is the most important time to keep going with the diet, exercise, medication, sleep, and other plans that have been working for you.
Make healthy traditions.
Every year, I host a big American Thanksgiving dinner at our house (we’re Canadian but many people in our lives - including my husband - have strong American roots). Instead of stressing out about it, I make the turkey and everyone else brings different dishes for our potluck style feast. I love it. It has become my favourite holiday, no question. I stay away from traditions like tromping into the woods to cut down a Christmas tree - I won’t always be able to do things like that. But traditions that work even in the midst of a flare up? Yes, please.
Schedule time outs.
My calendar between Thanksgiving and Christmas is already full of a few date nights, a massage, a hair appointment, a coffee date with friends, a couple of lazy family nights at home, and other things that make me happy - breaks in what could become a seriously overwhelming schedule. If I don’t plan ahead, these things don’t happen. And if these things don’t happen, I get sick.
I have a little reality check: NO ONE is going to think of these things for you. The holidays are stressful for everyone, and it’s up to YOU to make the changes you need to enjoy this season - and communicate them to the people around you.
I know that it sometimes makes you feel like the Grinch. Oh honey, I KNOW. But trust me that it’s all worth it to be able to celebrate a truly Merry Christmas.
HUGS. No go and be awesome :)
What kinds of things do you do to help make the holiday season happier?
Labels: Chronic Babe, Holiday Awesomeness
Passive Voice
This is *far* from the first time I've talked about how much I appreciate
ChronicBabe.com (and Jenni, the fabulous ChronicBabe who runs it). I got my weekly newsletter today and it just got me RIGHT HERE and summed up exactly what I've been trying to figure out how to say about this latest complication in my life - and how I'm trying to deal with it. I got Jenni's permission to share the whole thing here, in hopes that I'm not the only one out there who will find encouragement in her words.
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“You can’t live your whole life in passive voice,” my pal Amanda said recently. We were talking about how complicated life gets and how easy it can be to blame outside forces for all the negativity we experience. There are some people who walk through this life feeling like victims, getting overwhelmed and frustrated by bad circumstances - and letting those situations get the best of them.
Those people are living in passive voice. They focus on what happened to them, what someone else did, what they were told to do. When you’re sick, and tired, it’s easy to fall into that rhythm; once you’re there, it’s hard to get out of it. And then you become a victim, someone to whom life just happens.
Now please don’t misunderstand. I’m not trying to say we aren’t allowed to get pissed off or depressed about things that happen. Of course we are! But when that’s ALL we can see, when we can’t ALSO see what WE can do about our situation, then we’re in trouble.
But you’re here, reading this and working on being a ChronicBabe - and that means you’re not living in passive voice. You’re not just letting life happen to you. You’re a fighter! A rock star! A creative thinker who’s looking for solutions! You’re fabulous! You’re a ChronicBabe!
I get really excited about this subject because it holds so much power. When we develop the ability to step back a little, to see the bigger picture of our situation, we not only see what has happened to us; we begin to see what we can do to make our lives better. We see the people surrounding us, who can help us in many ways. We see that we’re able to change, adapt, and grow emotionally. That we can get stronger. That we can take charge of the direction of our life.
Yes, you are sick. Yes, that sucks. Yes, there are other frustrating forces in your life. I can relate. There are some days when it feels like too much, and I want to blame someone else for my situation. I want to blame someone (or something) else for making me late to a meeting, or for eating candy when I should be eating an apple, or for not landing the freelance writing gig I badly wanted. But if I sit back and blame something else, I become a victim, and then I’m living in passive voice - I’m just letting life roll over me, not taking responsibility for what I can do. What I CAN do is set a second alarm clock so I’m not late, I can buy fruit at the nearby farmer’s market so I have healthy snacks in the house, and I can work harder to create presentations that impress clients with my awesomeness. I don’t have total control over my situation, but I can do SOMETHING.
This is a big piece of the ChronicBabe puzzle, Babes. Do not live in the passive voice. Do not take the easy route and play victim to your circumstances. When you can, stand back and observe. Find your options, and take charge of the things you can change or improve. It’s not usually the easy way, but trust me: You’ll feel better for taking responsibility, and for being an active participant in your life. I promise to keep practicing what I preach! (And I know my pals will call me on my B.S. if I don’t.)
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Need some ChronicBabe wisdom in your life? You can sign up to receive Jenni's weekly newsletters in your own inbox http://www.chronicbabe.com/media/newsletters (and I highly recommend it).
Labels: Arthritis/Fibromyalgia, Chronic Babe, Stuff I Found Online, Stuff I'm Thinking About
Dear Briony
It's time for another Chronic Babe Blog Carnival! This week's theme is Parenting With Chronic Illness.-
Dear Briony,
I know that I tell you this every day, but you are an incredibly special little girl. And you are going to grow up special - partially because you're just a cool kid, and partially because you're growing up with a sick mommy.
Being your mommy is something I wasn't sure I'd be able to have in my life, but now I can't imagine my life without you in it. You're the best thing that has ever happened to me. And even on my worst flare-up days, your noisy wet kisses are the very best medicine and all the motivation I need to get out of bed and try my hardest to make it a good day.
We're a good team, you and I. I think it's amazing how God matches up babies and families, and how he knew that you and I would be a perfect fit. It breaks my heart that you're growing up with a sick mommy, but you deal with it so well. It's like you just KNOW. You are incredible.
Most kids grow up to realize that the world is not a fair place. You are going to learn that early, and I am so sorry for that. The world you live in is not full of unicorns and rainbows and sunshine like I wish it could be. There will be little things that you are going to miss out on because I am not a 'normal' healthy mommy. I hate that, but it's true. For now, you don't really understand. Someday, I fully expect that you'll have times when you feel angry, disappointed, and frustrated with me. And that's okay, because it's going to be part of your journey to understand what makes our family special - and in turn, part of what makes you special. If you let them, it will be moments like these that help you grow into a patient and compassionate woman and they will turn this challenge into an incredible blessing in your life.
Something else that makes you special is all the people in your life who love you like family - our village. I don't know if there has ever been another girl with as many 'aunties' as you have, people who step in whenever we need a little bit of extra help. You are SO loved. And I hope that these people will continue to be an important part of your life as you grow up. You will learn so much from them, and they'll be there for you on those days when you feel angry and frustrated and disappointed.
There are things you will miss... But one thing that will not missing from your childhood is LOVE.
And birthday parties. I don't care how sick it makes me, you are going to have birthday parties - parties *almost* as special as you are :)
Love,
Mommy
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If you like what you're reading, there's more - lots more - over at the ChronicBabe Blog Carnival! Please show my fellow Chronic Babes some love :)Labels: Arthritis/Fibromyalgia, Briony, Chronic Babe, Mommy Stuff
Ten
Another Chronic Babe Blog Carnival submission... This week's theme is Learning To Live With Pain. I'll link to the rest of the articles when they all go live this week.-
I don't remember what it's like to live without pain.
I can't remember a single day of my life where I didn't wake up and feel pain in most of the joints and muscles in my body. Of course, some days are far better than others - but even on my very best days, it's always there.
People get really sad when they find out that I've lived with chronic pain since I was ten. I've thought about that, for sure. But what I've thought about even more is the fact that I might be incredibly lucky NOT to remember very much about life before I got sick. Kids don't always get knocked down in the same ways that adults do. Of course, maturity and perspective are incredibly important when it comes to dealing with something like chronic pain. But there is definitely something to be said for youthful resilience.
I was so freaking determined to be NORMAL that learning how to live with pain just kind of happened. If I was going to do things with my friends, if I was going to have a full course load and a full social life, if I was going to go to university and build my career, I needed to push through the pain. Again, thank God for the naivete of youth. When you're young, you're so much more fearless and you still believe that you can do anything. Some of the trial-and-error process really hurt, but one day - right around my twenty-fifth birthday - I stopped and looked around and realized that I was doing it. I was living my life with chronic pain. And all things considered, I think I was doing it pretty well.
Some days, I think about ten year old Lindsay. It makes me want to cry. I want to hold her and cry and mourn the loss of her childhood - because in so many ways, that little girl went from ten years old to adulthood literally during Spring Break when she was in grade five. I squeeze my eyes shut and wish with all my might that I could shield her from what's coming, stretching out my arm to brace her from the accident I can see coming right at us.
But in the next breath, I wonder what that would be stealing from her. Chronic pain isn't something I like, but it's undeniably a part of me. When your energy is limited and every movement counts, it causes you to prioritize every decision and everything in your life.
When everything costs something, you place value in the things that truly count. And that's a hefty little life lesson for a ten year old. But it's one that I would never take away from her.
Labels: Arthritis/Fibromyalgia, Chronic Babe
Love and Other Disasters (or How to Stay Married to a Chronic Babe)
This post was prepared for inclusion in the Chronic Babe Blog Carnival... Which I was totally late for. Not sure if it will be *officially* included, but thought it was worth sharing anyway since I wrote it! This week's theme is 'Love, Illness and Other Confusing Things.'
Learn more at ChronicBabe.com.-
Some people begin a relationship with their eyes half-closed, coasting along and basking in the perfection of love and life.
We are not one of those couples.
When Geoff married me, he knew exactly what he was getting himself into. Okay, maybe not EVERYTHING... I still think he was caught a little off guard by the intensity of my love for bad 90s power ballads. But he knew that I was sick - and when he married me, he married me + my disease. For better or for worse.
I wish I was one of those wives who could do it all perfectly. I really, truly mean that with every ounce of Type A personality in my being (and that's a lot... trust me). I long to be the wife that I feel my husband deserves.
But I'm not that girl. I'm a girl with arthritis and fibromyalgia and chronic fatigue. I hate it, but that's who I am. I'm a girl who often finds herself so exhausted at the end of the day that I fall asleep on the couch. I'm a girl who can't always follow through on what I said I would do, because flares can be so unpredictable. I'm a girl who gets really excited about walking to the park, but then panics once I get there because I realize that I'm too tired and in too much pain to walk home.
And I'm not going to lie. It's a stress in our relationship. I often think that - without my disability - we would never fight at all. It's not that we don't love each other, or that we're not trying. It's that we speak different languages sometimes. My husband speaks the language of healthy, 'normal' people. And I speak the language of chronic illness. Neither is right, and neither is wrong. But there are days when we desperately need the services of a translator.
And so, I present to you my guide to being married (and - let's face it - STAYING married) to a chronic babe:
1. Check in often.
Don't be an ass about it, but be sure to ask how she's doing - even on days when it appears that things are going well. It lets her know that you care and that you're aware, and it eliminates all the guessing games. It's sometimes very difficult to judge how she's doing just by looking at her - chronic babes are actresses out of necessity and have honed their craft over years and years of practice. She might not always volunteer information about how she's feeling because she's scared of sounding like a whiner. And she might be 'faking healthy' in front of other people just to avoid awkward conversations with people she's not comfortable discussing her personal health challenges with. By asking, you significantly reduce your risk of saying something truly stupid or expecting too much of her. It allows you to function as a team. And teamwork is key to a chronic marriage.
2. Develop a disease vocabulary.
I find it incredibly difficult to verbalize every symptom I'm experiencing or how each one is making me feel on any given day. My husband is a nurse, so he's used to asking patients about their pain relative to a ten-point scale. I have developed my own ten-point scale of yuckiness. For me, the scale encompasses pain, fatigue, depression, and all my symptoms rolled up into one. When he asks me how I'm feeling, I don't always need to launch into a big detailed explanation - I can just say '8' and he knows that I'm having a tough day, or '3' and he knows that I'm doing okay. There are probably an infinite number of different ways to 'measure' or communicate the current status of your disease, and I encourage you to find one that works for you - or maybe even one that makes you laugh.
3. Let her make bad choices.
NEWS FLASH. Life with a chronic illness is not exactly a picnic. It's full of doctor's appointments and new meds and balancing diet and exercise and worrying about more things than you can probably imagine. Sometimes, your chronic babe will choose to use her energy to do something just purely for FUN. Sometimes, that fun thing might cost her a lot and land her in bed for a couple of days after. That's her prerogative, and the last thing she needs is for you to point out that she might be taking a step backwards my participating. Trust me, she is intimately aware of the consequences of the decision she's making. But sometimes living life takes precedence over chronic illness - and sometimes it should.
4. Make a plan.
Take advantage of a good day to talk about how to handle the bad ones that are sure to come. Find out what stresses her out most when she's sick, and figure out if that's something you could help with on her bad days. Find out what makes her feel better, so you're not just standing around wondering what to do when the next disaster strikes. She's not always going to be able to communicate these things (or communicate them NICELY) on her sickest days. But she'll be forever grateful for a husband who knows to clean up the kitchen while she's soaking the worst parts of her pain away in a bath. And making a plan helps you step inside her world just a couple of minutes. Living well with a chronic illness means that EVERYTHING is calculated. I don't get up from the couch and walk upstairs to pee without first planning to make that trip as efficient as possible. Before I move a finger, I've already figured out exactly how I'm going to get up, what I'm going to take with me that needs to go upstairs anyway, what I can bring downstairs again to save myself another trip, what else I can do while I'm already standing... It would literally blow your mind to spend two minutes inside mine. Planning is the key to success.
5. Become an expert.
I think I can confidently speak on behalf of all chronic babes and say that we don't want you to think 'sick' every time you look at us. But taking the time to learn about our disease(s) communicates to us that you care. And being knowledgeable enough that we can talk to you about what happened at our latest doctor's appointment is a strange but surefire way to say 'I love you' to a sick chick. It doesn't mean that it's all you need to talk about - in fact, that would be TERRIBLE - but it means that the quality of those conversations will skyrocket. And that leaves more time and energy to just be married - which is the ultimate goal after all. I desire normalcy in all its forms and believe it or not, talking about my disease - instead of turning it into the elephant in the room that is never acknowledged - helps make it more normal for me.
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I'm dedicating this post to Geoff, for knowing what you were getting into and choosing to love me anyway. I love you for so many reasons, but maybe most of all for making the decision to join me on this adventure. And to Briony, my baby girl who didn't have a choice but is growing up with a chronic mommy. It's not always going to be easy, but there's a heck of a lot of love in this family and it will get us through. I promise.Labels: Arthritis/Fibromyalgia, Chronic Babe, Married Stuff
Another Friday Smile
Kerri at
Six Until Me - a fabulous blog about living well with diabetes - and her husband welcomed a baby girl into the world yesterday morning. I saw the news on Twitter this morning and I bawled, well, like a baby. Her health challenges are different than mine and so was her road to welcoming her baby girl, but I could so totally relate to the excitement, the fear, the anticipation, the worry, and the thousand emotions attached to being a chronic babe doing the mommy thing... And I can't wait for her to experience all the joy of being a mommy to a beautiful baby girl. SO EXCITING. It just goes to show that a chronic illness will only take away as much of your life as you allow it to.
Labels: Arthritis/Fibromyalgia, Chronic Babe, Mommy Stuff, Stuff I Found Online
Warm & Fuzzy
I signed on last week to be a moderator for the Chronic Babe forum I've been obsessing about as of late. I'm so excited... It's amazing to see how the community is beginning to grow, and how connections are forming and so much important information is being shared. And I'm so happy that I've found a way to give back and be a part of making it all happen. It makes me feel all warm and fuzzy inside when I see how it makes such a tangible difference in these women's life - and in my own, of course, because it always seems that you help yourself the most when you're helping someone else.
Labels: Chronic Babe
Babelicious
This past weekend marked the launch of the ChronicBabe Forum, an extension of the website for young women with chronic illness that I've grown to love and rely on for encouragement and inspiration. We now have a space to talk about our experiences and connect with other women like us - which, granted, is not totally unique. What makes this forum special, though, is that this is *not* a place to bitch and whine about being sick, but a place to be positive and share ideas. YAY!
I am so excited. I'll even admit to tearing up as I clicked and browsed some of the profiles of other early forum members... It's such an incredible experience to see evidence that I am *not* alone. Not even close.
If you're a ChronicBabe, be sure to check it out!
ChronicBabeClub.ning.comPS - I found it incredibly strange that, out of the profiles I browsed, SO MANY of them are freelance writers, graphic designers, or something related. Kind of makes you wonder about links between personality and illness, and also about the ability for a woman with chronic illness to manage a full-time office job. Just something I'm thinking about... :)
Labels: Arthritis/Fibromyalgia, Chronic Babe, Stuff I Found Online
Clearing Out The Clutter
Last month - a few weeks before we left on our trip - I joined an online friend in a project she started called
Be Here Now. The idea was incredibly simple - to live more mindfully and make an effort to be present in every moment. Over the past month or so, I've been making an effort to do exactly that. It has NOT been easy, but the effort has been so worth it.
I've noticed myself being a little less frustrated in situations that would ordinarily have pushed me right over the edge. And I've noticed that each day holds just a little bit more joy - living in the moment forgives a dirty house in favour of some giggle time with a baby, it realizes that a phone call with a friend should be spent sitting with a cup of tea and not folding laundry, and it gives permission to just STOP every once in a while. The funny thing is that I expected my house to become a disaster zone while I 'lived in the moment' and gave up my multitasking way of life. It actually isn't *too* bad. Turns out that focusing on one task at a time is actually quite efficient - who knew.
All this focus on living more mindfully has made me incredibly sick of the clutter in my house and the baggage it represents. And so I'm getting rid of it. The events of this past year - specifically, becoming a first-time mom and helping to support my mom through a fight against breast cancer - have really impacted me. There's nothing like new life and a life-and-death battle to really set you straight and help you figure out your priorities. I realize more than ever that it's people (and not STUFF) that makes my life so valuable. Don't get me wrong... I like stuff. Particularly stuff in the form of books and clothes and shoes. But I'm finding that I really crave a home full of a little less stuff.
And so, I am embarking on a mission to get rid of all the stuff that I haven't touched in a few months. Seriously. I'll never miss it once it's gone. And the best part is that it's going to go to a great cause: the Canadian Breast Cancer Foundation. We're registered to do Run for the Cure again this year, in honour of my mom. And I'm planning a yard sale for sometime in June to kickstart our fundraising efforts. Anything that doesn't sell is getting packed up at the end of the day and taken straight to MCC.
For me, this clean-up of my house is also a clean-up of my heart. I want to be surrounded by people I love, not just stuff that I love. I'm really excited :)
Want to join me?
**UPDATE: We have tentatively selected Saturday, June 6 as our 'Yard Sale for the Cure' date.
Labels: Be Here Now, Chronic Babe, Run for the Cure, Yard Sale
Getting Ready for Christmas
As always, Jenni from ChronicBabe.com has climbed inside my head and posted an article that speaks to *exactly* where I'm at right now. This week's topic:
Get Ready For The New. And I am sooo ready to do that.
2008 was a big year, and the record-high high moments were balanced by earth-shattering lows. I'm ready to move on, and so very excited for what 2009 will bring for my family: the end of my mom's battle with breast cancer, my daughter's first year (and mat leave until sometime in October), and so much more that makes my heart smile in anticipation.
But for today, and the last week of this year... I want to make the most of these very precious moments with family and all the people I love. I want to dwell on peace, surround myself with love, and seek out little moments of joy. And I wish the same for you, dear friends. Merry Christmas.
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This is the ornament we bought to celebrate Briony's first Christmas:
Labels: Christmas, Chronic Babe, Stuff I'm Thinking About
