Some days seem full of promise and full of life, full of potential. Other days seem consumed by exhaustion, stress, or the sadness of what I am currently unable to accomplish and the feeling of being helpless, useless. But the beautiful thing about raising a child is that there are moments which pull you outside of yourself and force you to look up, to look deep within another person and see the storm raging inside someone else for a change, to bring someone else through it and, in the process, discover that you can make it through, too.
Today was harder than yesterday. Little One had a better day, but I hadn't managed to get the dishes into the dishwasher yesterday, so the kitchen was piled up. I had a bad month financially and felt stressed and disappointed with myself. If only I wasn't sick. If only my body's ability could slightly match my desire and drive. I could build my business, take action, make things better, buy groceries when we needed them and not only on 'money day.' I made food - I always do, or find a way to have it, because I'm a mom and she comes first, which also means caring for myself as best I can - but didn't have the energy - or clean dishes - to do it well. It wasn't a bad day, just not a good day, at least not inside myself.
On the other hand, Little One had a better day. Not perfect, but much better. She stayed calmer, made better choices, and generally appeared to embrace the innocent joy of a child. Except for that one, long, moment... The moment when her internal storm became visible above my own. It's funny, though, throughout it she seemed, not angry, but taunting, laughing at her bad behavior, testing her limits. She looked anything but scared. She appeared to be the calm I didn't feel. It should have made me mad, angry, scared, upset, miffed, anything other than calm myself. That's the thing with fear, anger, and pain... They're such funny things. On the outside they often look like anything but what they are, and so we misdiagnose and mistreat them, and then don't understand why our efforts failed to get the results we expected.
Today was a great day; today I saw beyond my daughter's outside veneer, beyond the jeering smile and the taunting laughs and heard what she was really trying (not) to say.
She got a new sandbox today. We live in a safe area, but even still, I was nervous as we have no fence yet. So we discussed and role played the rules for playing in the yard while I was inside (watching out the wide open window the whole time, of course). She understood perfectly and did fine, of course. Until clean up time. Not because she didn't want to clean up, she's very independent and likes to participate in getting things done. But she doesn't like feedback when she's working. It became a thing - a big deal inside her, although it seemed to any sane outsider that it shouldn't be, if she'd just listen.
So, knowing it was against the rules and not "safe," she left the established safety limits of the backyard, and then left the front yard and started walking away. At first she just went back and forth along the sidewalk a couple of times. And then she stopped walking back and forth and started just walking. Quickly. Not good. Scary moment for Mom! I wanted to yell, to shout, to chase her. I wanted to try to shock her into standing still, stopping, long enough for me to get to her and grab her. But I knew... Deep inside, I knew what I would do in that situation - I would run faster and farther and be afraid to ever stop. So, instead, I walked behind her. Slower, because, you know, I have CFS and had to pace myself if I had any chance of reasonably keeping up with her and eventually catching up. I wanted to be angry, so angry. But I wasn't angry, and I knew it. I was afraid. The thing is, she didn't look afraid, at all. She didn't look angry. She looked happy. When she looked back, periodically, saw me following her, and laughed as if to say, "You caaaan't caaaatch me," or grinned a grin of seeming superiority, she seemed very much in control of what she was doing.
In reality, we didn't walk more than 3-4 blocks, if quite that. But it felt like an eternity, and the whole way I just thought about whether there were cars at the intersection ahead and whether she would stop, turn, stay on the sidewalk and not cross the road, or look before she crossed, because it didn't matter how fast I ran, she'd get there first. I thought about how if I didn't run and catch her, she might make it to the intersection, but if I did run to catch her she'd run faster and be in more danger. I worried about the jogger passing me in her direction and picked up my pace a bit (when she wasn't looking) because I couldn't stand that she was so far from my reach. I imagined what other parents might think or say and whether I was doing the right thing, handling this the right way. What would other moms or dads do if their child ran away, grinning and laughing at them like that? What should I do when I did eventually catch up to her? I thought about how much energy this was going to take away from my - from our - day, and not knowing how far she might walk before deciding to let me catch up. I thought about how it didn't matter because, no matter what, she was so very worth it, good moment or bad regardless. Basically, I was afraid and unsure and so badly wanted to be angry. But I wasn't angry. I was just scared.
And I knew. I just knew. She wasn't taunting. She wasn't feeling powerful. She wasn't enjoying the bad behaviour. She looked like she was, but she was really terrified. She had nothing left to lose. She KNEW that if she turned around and came back, or stopped, I would definitely catch up. And if she didn't, well... at least she was okay while she was walking. And if I got angry, if she could make me angry, that would at least be familiar ground, something she knew what to do with. It would be predictable and strong and she could get angry, too, which would allow her to forget that she was afraid. So I didn't. I just kept walking with her, at a distance. She had turned into an empty, open, field-like area, which was good because the uneven ground was slowing her down. When she tripped and lost her boot, she finally stopped and let me catch up. She wasn't hurt, but the smiling and taunting was gone; the invisible storm inside was settling down. I caught up to her. And in that moment, it all finally came out, the fear which had been driving her ever forward, in one calm question:
"What are you going to do to me?"
And I saw it. No longer just a guess or intuition, she let me see the terror and uncertainty hidden so completely under the "disrespectful" exterior. Like the fear and uncertainty hidden under my calm face, my silence, my slow steps, this was her storm in the calm. She didn't know what was going to happen. From the moment she stepped outside those rules and limits, she felt like she'd gone past a point of no return. Why wouldn't she continue? What did she have to lose? So I took her hand, stood her up and got her boot back on. I got down to just below her eye level, gently put my hand on her tummy, and said, "It seems like you must have been really scared to have walked so far." I stood up and started walking back, just as calmly, hand-in-hand. I kept my pace and voice calm and steady and told her we'd talk about what would happen when we got home. (Just between us? I hadn't decided yet... I was taking my time. This is new to me, as we so often receive pressure to act immediately lest we 'spoil' our children or look bad or fail in some other way... But reacting too soon does not yield good results for me, so I'm trying this, instead.) And in this moment of unexpected calm, she finally felt free to share with me.
"I'm sorry for running away. I was just so scared. I didn't know what was going to happen."
I must have heard this at least 5-10 more times after that, today. She really was scared, and she really was sorry. So what did I end up doing? Nothing. Absolutely nothing. I'd already done exactly what I needed to do. I'd created an environment where, in the future, she might not be so scared of what was going to happen. She might not feel like she had to get away. And if she did, maybe her storm hidden inside would calm down sooner, and I might not have to follow her as far. My calm through both of our storms meant our home could feel safer than running away. Do I think every parent out there would agree? No. And I get it, because my instinct is to punish it out of her - lecture, ground her, take away privileges, generally make her feel sorry - so she'll be more afraid of running away than staying. Except, see, once it's down on paper, doesn't that actually sound horrible? As someone who grew up with an unbelievable storm hidden by massive external calm and quiet, as someone who had good, loving parents and still felt very alone inside, I know what it's like to feel like there is no win but only better or worse evils. And I never want her to feel like that. She didn't run away to make me feel bad. I thought she did, and maybe even she thought so, too, at first. But she didn't. She ran away because she already felt bad. And now, she feels better. Not because she ran away - no, I did not reward her bad behavior, no matter how easy it might be to see it that way out of fear for our children's future - but because when she finally got brave enough to stop and face her fears, she came out okay. We weathered it together.
So today was harder than yesterday. My storm inside blew strong. But by finding my calm in helping my daughter to find hers, by getting outside myself and ignoring how the situation made me feel, we both made it through today better than when we started. And we did it hand-in-hand. Today was a great day.
(Have I mentioned lately that I love being a mom?)
Tuesday, May 16, 2017
Saturday, May 13, 2017
How Being Vulnerable Makes Me Strong!
Today I'd like to break away from the theme of CFS a bit and delve into another important aspect of my life: I'd like to share with you a personal moment of vulnerability as a mother.
Before I share with you my story, I'd like to thank Paul & Stacey Martino for their book, "The Miracle Morning for Transforming Your Relationship." It is thanks to their insights that I am learning to allow myself to be vulnerable to life's imperfections and let go of expectations and control. I'd also like to thank Amy McCready for her parenting course, Positive Parenting Solutions, for helping me to better understand my daughter and have the tools I need to truly be present with her and guide her through her challenges in the best and most effective ways possible. This story would not be possible without both of these resources!!
My daughter is not mine biologically. She came into my life when she was two, and into my care full-time when she was three. She's now five, but that doesn't change the fact that she carries baggage with her from her past. Don't get me wrong; she is worth every minute, every ounce of energy, and every challenge! I am grateful every day for the blessing she is - which is why I pour myself into parenting courses and personal growth as much as I am able to. However, behaviour continues to be a challenge. When she gets angry, it's scary. She's little, but she's strong and passionate. I am (trying not to be) ashamed to admit that I can be terrified of her at times. But thanks to Amy McCready I was able to recognise that these behaviours are simply the mistaken goal of revenge, and that to make progress I had to let go of the parenting paradigm of "bad behaviours need to be punished!" When she got in trouble for dumping shampoo down the sink drain instead of washing her hands, I thought I was taking away the negative power she was seeking. I was wrong. In her state, I was actually saying to her that a few ounces of FREE shampoo were more important than her. What???? No way, right? But seriously, way....
So today I decided to try something new. During her independent play time, which we call "quiet time" and serves as independent, (hypothetically) uninterrupted time for both of us, during which we do not speak - which of course means she can speak as much as she wants, but I will not respond, because as both Amy and Stacey teach us, we can only control ourselves, not our children or anyone else - we have a whiteboard system. Rather than being accountable to me and getting nagged or bossed around by me, if she CHOOSES to open her door for something during her quiet time, she gets a mark on the whiteboard, I give her a five-finger count (non-verbal, as she is very keen on verbal attention), and either she is back in her room with the door closed, or she gets another mark and another five-count, etc. If she decides she needs to go to the bathroom, wash her hands, etc, two minutes are put on the microwave timer and she gets five marks, with one-minute timers and five marks each time, if it's not long enough. For every five marks, she will return to her room for one minute after her quiet time is done. (We also use this for bedtime/nighttime.) It's very fair because to get five marks she's either spent one to two minutes in the washroom or nearly half a minute out of her room choosing to ignore the rules, so she's basically just making up for it by transferring the time to later.
Usually this works very well as she understands very clearly that each mark is neither good nor bad but simply a choice she made, so rather than me telling her that yes she can go to the washroom or no she can wait, or to go back to her room, close her door, etc, she can decide for herself if she really needs something, if it's worth getting marks, or if she's fine and can wait. And she has the visual aid of either seeing a clean board when she's done, or watching me wipe away the marks before setting the timer for her make-up time, both of which are satisfying for her. I love being able to let go of my control and allowing her to be accountable to herself rather than to me.
On the other hand, some days "we" forget, in the moment, that this is her choice, not mine, and when calls for undue attention aren't answered and power can't be grabbed, anger becomes the master of the moment. I know, I know, she's only a fraction of my body size and I can lift her easily, why would I be scared? Uhhhh, well, because sometimes it hurts! Duh... And nobody likes to be hurt. But as Positive Parenting Solutions taught me, as parents we don't know what to do with feelings of hurt but we do know what to do with feelings of anger, so we use that instead. Yep... Ain't that the truth! It's also true that in that moment - and even beyond - a child who has reached the point of feeling so low as to seek revenge will not see discipline, no matter how positive, as loving or guiding; they see only anger and worthlessness. So let's see... Mom is smiling, shrugging her shoulders, letting Little One make her own choice and not taking it personally... Okay, that worked. She's back in her room; good choice, Little One. Okay... That's worked again - seeeveraaal times. Hmm hmm hmmmmm, I'm not going to get annoyed. La dee da dee da... Haha, cause, you know, I'm not human, too. Okay. Little One's had enough of not being able to get to Mom. Out come the angry hands. Not much, just enough to get an X on the board to show she cannot get a check mark today for "No angry hands." Poor thing is disappointed and frustrated with herself, but now has less to lose! Back in her room, and this time out she comes with her toy cash register held back behind her head - it's about to get serious!
So, decision time for me. Take on a masculine role, stand taller than her, and hope I can get to her before she's able to wield that heavy plastic toy at me with more force than she should be able to, or embrace my feminine strength and allow myself to be vulnerable? Hoo-ee! Not an easy call. On the one hand, I know it will hurt if I get hit with that. But... I probably won't get to her in time, and even if I do, things will undoubtedly escalate anyway. Here comes the "trying something new" part: I stopped putting marks on the board, got down on my knees, then sat back on my feet. Now I was smaller than her, and she was bigger. I was not going to respond. I was completely vulnerable. I closed my eyes, put my head down, and let the immense fear I was feeling wash across my face. I was not going to stop her, no matter what. She was in control. I would need ice for my head, I was sure. I waited... She slowly walked closer, and I could hear the toy was still above her head. Waiting. Slowly closer... I was afraid, and I let it show. I waited. She came right up to me. It was still above her head, I was still completely vulnerable.
Okay. Let's pause here. Most of you parents out there - and, you know, sane human beings of any type - are probably thinking as I was. This! Is! A! Bad! Idea! This cannot end well.
And suddenly, down comes the toy cash register! Gently, on the floor beside her. And she touches my face tenderly. Okay, I cried. Silently, but tears down my cheek. Because I let go of control, gave it over to her, and once she realized that, she made the loving choice. I was okay. The fear left in a massive flow of tears down my face as she hugged me and touched my hair and kissed me until I was all better. Finally, I let go, opened my eyes, wiped dry my cheaks, and stood up. "Are you sure that's enough hugs?" she asked sweetly. I nodded, and after a few moments she returned calmly to her room. I'd like to say she stayed there for the rest of the quiet time, but the fact is she did choose to get more marks. It was a challenging morning today. BUT! on the positive, there was no more anger, no power struggles. The emotional gap was bridged. As someone who spent their childhood feeling emotionally isolated because of personal differences and internal challenges, I understand what it feels like to feel alone with your emotions. I know how critical it is for a child like that to have the adults and others around them be the ones to reach out and connect. But it wasn't until I let myself be completely vulnerable - physically and emotionally - that I was able to do that.
So, back to the theme of this post: how much strength did it take to let go of control and open myself up to such deep vulnerability? To remain vulnerable and let my fear show rather than steeling myself against what was to come? It took everything I had inside me! And it also opened up a world of possibility to me - a world that includes a deep, emotional connection with my daughter. Allowing myself to be vulnerable to the world and people around me opens me up to having the support and love I need, and to more opportunities to give the same back to others. It enables my husband opportunity to be close to me, to support me, to express love and feel loved. Stacey, you are absolutely right. Feminine vulnerability is in no way a weakness. It is a beautiful gift, a fantastic door-opener, and requires a far greater strength than closed control ever could. As a single-mom with a chronic illness and a husband who lives in a different city, as someone who has had to fight for nearly everything she has almost every step of the way, as a woman who has been burned by life in the past, I present this challenge to you:
To all my feminine friends - challenge yourself to be vulnerable today. Let go of control and let others in. Tell someone about your challenges so they can support you and feel comfortable reaching out to you with theirs. Make requests without expectation rather than demands with obviously only one "right" answer. Assign tasks to others and let them do it themselves, their way, even if they might do it "wrong." Even if it's just for today only, open yourself up to possible pain - and, by extension, exquisite joy and endless possibilities. Be strong enough to take chances! Set the example for your children, your family, and your friends: be daring and let life happen.
To all my masculine friends - challenge yourself to take the lead and enable the feminine women around you to feel safe enough to let go and be truly open. Embrace your strengths, and be open enough to life's imperfections to take charge and take positive action, even if the results might not be what you "expect." Look at those around you with new eyes, watch for opportunities to appreciate the strength in feminine vulnerability and let your masculine strength create and environment of safety and joy. Enable yourself so you can enable those around you to find their most authentic self. Decide who you want to be: take the lead and give your family and friends someone to follow.
No matter who you are, or what specific challenges you face, embrace who you are at your core, the deepest part of you, find your strengths, and be open to letting who you are and what you REALLY feel, beneath the anger, frustration, control, fatigue, etc, show. As for me, I'm going to go hug my beautiful daughter and enjoy my day with her - as best as I'm personally able to!
May today, and each day, be your best day yet.
Before I share with you my story, I'd like to thank Paul & Stacey Martino for their book, "The Miracle Morning for Transforming Your Relationship." It is thanks to their insights that I am learning to allow myself to be vulnerable to life's imperfections and let go of expectations and control. I'd also like to thank Amy McCready for her parenting course, Positive Parenting Solutions, for helping me to better understand my daughter and have the tools I need to truly be present with her and guide her through her challenges in the best and most effective ways possible. This story would not be possible without both of these resources!!
My daughter is not mine biologically. She came into my life when she was two, and into my care full-time when she was three. She's now five, but that doesn't change the fact that she carries baggage with her from her past. Don't get me wrong; she is worth every minute, every ounce of energy, and every challenge! I am grateful every day for the blessing she is - which is why I pour myself into parenting courses and personal growth as much as I am able to. However, behaviour continues to be a challenge. When she gets angry, it's scary. She's little, but she's strong and passionate. I am (trying not to be) ashamed to admit that I can be terrified of her at times. But thanks to Amy McCready I was able to recognise that these behaviours are simply the mistaken goal of revenge, and that to make progress I had to let go of the parenting paradigm of "bad behaviours need to be punished!" When she got in trouble for dumping shampoo down the sink drain instead of washing her hands, I thought I was taking away the negative power she was seeking. I was wrong. In her state, I was actually saying to her that a few ounces of FREE shampoo were more important than her. What???? No way, right? But seriously, way....
So today I decided to try something new. During her independent play time, which we call "quiet time" and serves as independent, (hypothetically) uninterrupted time for both of us, during which we do not speak - which of course means she can speak as much as she wants, but I will not respond, because as both Amy and Stacey teach us, we can only control ourselves, not our children or anyone else - we have a whiteboard system. Rather than being accountable to me and getting nagged or bossed around by me, if she CHOOSES to open her door for something during her quiet time, she gets a mark on the whiteboard, I give her a five-finger count (non-verbal, as she is very keen on verbal attention), and either she is back in her room with the door closed, or she gets another mark and another five-count, etc. If she decides she needs to go to the bathroom, wash her hands, etc, two minutes are put on the microwave timer and she gets five marks, with one-minute timers and five marks each time, if it's not long enough. For every five marks, she will return to her room for one minute after her quiet time is done. (We also use this for bedtime/nighttime.) It's very fair because to get five marks she's either spent one to two minutes in the washroom or nearly half a minute out of her room choosing to ignore the rules, so she's basically just making up for it by transferring the time to later.
Usually this works very well as she understands very clearly that each mark is neither good nor bad but simply a choice she made, so rather than me telling her that yes she can go to the washroom or no she can wait, or to go back to her room, close her door, etc, she can decide for herself if she really needs something, if it's worth getting marks, or if she's fine and can wait. And she has the visual aid of either seeing a clean board when she's done, or watching me wipe away the marks before setting the timer for her make-up time, both of which are satisfying for her. I love being able to let go of my control and allowing her to be accountable to herself rather than to me.
On the other hand, some days "we" forget, in the moment, that this is her choice, not mine, and when calls for undue attention aren't answered and power can't be grabbed, anger becomes the master of the moment. I know, I know, she's only a fraction of my body size and I can lift her easily, why would I be scared? Uhhhh, well, because sometimes it hurts! Duh... And nobody likes to be hurt. But as Positive Parenting Solutions taught me, as parents we don't know what to do with feelings of hurt but we do know what to do with feelings of anger, so we use that instead. Yep... Ain't that the truth! It's also true that in that moment - and even beyond - a child who has reached the point of feeling so low as to seek revenge will not see discipline, no matter how positive, as loving or guiding; they see only anger and worthlessness. So let's see... Mom is smiling, shrugging her shoulders, letting Little One make her own choice and not taking it personally... Okay, that worked. She's back in her room; good choice, Little One. Okay... That's worked again - seeeveraaal times. Hmm hmm hmmmmm, I'm not going to get annoyed. La dee da dee da... Haha, cause, you know, I'm not human, too. Okay. Little One's had enough of not being able to get to Mom. Out come the angry hands. Not much, just enough to get an X on the board to show she cannot get a check mark today for "No angry hands." Poor thing is disappointed and frustrated with herself, but now has less to lose! Back in her room, and this time out she comes with her toy cash register held back behind her head - it's about to get serious!
So, decision time for me. Take on a masculine role, stand taller than her, and hope I can get to her before she's able to wield that heavy plastic toy at me with more force than she should be able to, or embrace my feminine strength and allow myself to be vulnerable? Hoo-ee! Not an easy call. On the one hand, I know it will hurt if I get hit with that. But... I probably won't get to her in time, and even if I do, things will undoubtedly escalate anyway. Here comes the "trying something new" part: I stopped putting marks on the board, got down on my knees, then sat back on my feet. Now I was smaller than her, and she was bigger. I was not going to respond. I was completely vulnerable. I closed my eyes, put my head down, and let the immense fear I was feeling wash across my face. I was not going to stop her, no matter what. She was in control. I would need ice for my head, I was sure. I waited... She slowly walked closer, and I could hear the toy was still above her head. Waiting. Slowly closer... I was afraid, and I let it show. I waited. She came right up to me. It was still above her head, I was still completely vulnerable.
Okay. Let's pause here. Most of you parents out there - and, you know, sane human beings of any type - are probably thinking as I was. This! Is! A! Bad! Idea! This cannot end well.
And suddenly, down comes the toy cash register! Gently, on the floor beside her. And she touches my face tenderly. Okay, I cried. Silently, but tears down my cheek. Because I let go of control, gave it over to her, and once she realized that, she made the loving choice. I was okay. The fear left in a massive flow of tears down my face as she hugged me and touched my hair and kissed me until I was all better. Finally, I let go, opened my eyes, wiped dry my cheaks, and stood up. "Are you sure that's enough hugs?" she asked sweetly. I nodded, and after a few moments she returned calmly to her room. I'd like to say she stayed there for the rest of the quiet time, but the fact is she did choose to get more marks. It was a challenging morning today. BUT! on the positive, there was no more anger, no power struggles. The emotional gap was bridged. As someone who spent their childhood feeling emotionally isolated because of personal differences and internal challenges, I understand what it feels like to feel alone with your emotions. I know how critical it is for a child like that to have the adults and others around them be the ones to reach out and connect. But it wasn't until I let myself be completely vulnerable - physically and emotionally - that I was able to do that.
So, back to the theme of this post: how much strength did it take to let go of control and open myself up to such deep vulnerability? To remain vulnerable and let my fear show rather than steeling myself against what was to come? It took everything I had inside me! And it also opened up a world of possibility to me - a world that includes a deep, emotional connection with my daughter. Allowing myself to be vulnerable to the world and people around me opens me up to having the support and love I need, and to more opportunities to give the same back to others. It enables my husband opportunity to be close to me, to support me, to express love and feel loved. Stacey, you are absolutely right. Feminine vulnerability is in no way a weakness. It is a beautiful gift, a fantastic door-opener, and requires a far greater strength than closed control ever could. As a single-mom with a chronic illness and a husband who lives in a different city, as someone who has had to fight for nearly everything she has almost every step of the way, as a woman who has been burned by life in the past, I present this challenge to you:
To all my feminine friends - challenge yourself to be vulnerable today. Let go of control and let others in. Tell someone about your challenges so they can support you and feel comfortable reaching out to you with theirs. Make requests without expectation rather than demands with obviously only one "right" answer. Assign tasks to others and let them do it themselves, their way, even if they might do it "wrong." Even if it's just for today only, open yourself up to possible pain - and, by extension, exquisite joy and endless possibilities. Be strong enough to take chances! Set the example for your children, your family, and your friends: be daring and let life happen.
To all my masculine friends - challenge yourself to take the lead and enable the feminine women around you to feel safe enough to let go and be truly open. Embrace your strengths, and be open enough to life's imperfections to take charge and take positive action, even if the results might not be what you "expect." Look at those around you with new eyes, watch for opportunities to appreciate the strength in feminine vulnerability and let your masculine strength create and environment of safety and joy. Enable yourself so you can enable those around you to find their most authentic self. Decide who you want to be: take the lead and give your family and friends someone to follow.
No matter who you are, or what specific challenges you face, embrace who you are at your core, the deepest part of you, find your strengths, and be open to letting who you are and what you REALLY feel, beneath the anger, frustration, control, fatigue, etc, show. As for me, I'm going to go hug my beautiful daughter and enjoy my day with her - as best as I'm personally able to!
May today, and each day, be your best day yet.
Sunday, November 23, 2014
In a CFS Minute
Well, getting around to writing my second post on here didn't take me long, at all! *cough, cough*
Seriously, though, I think for me one of the hardest things to be at peace with has been the realization that I don't really get to set my own schedule anymore. Just because I want to go out with my friends or call my mom or accomplish some other goal doesn't mean I am going to get to do it when and how it should be done. Staying in touch with friends is really hard when you don't have the energy to pick up the phone and talk. It helps that some of the people around me try to be understanding, but it really isn't easy to understand something like CFS unless you live it. Honestly, I'm not offended when someone doesn't get; if anything it is a good thing because it means their lives haven't been invaded by this terrible beast. For the sufferer, though, it can be exhausting and discouraging feeling like you need to explain again why you couldn't answer the phone, or why you couldn't go out with Sam on Sunday but somehow managed to go out with Julie on Monday. No, Sam, you aren't less important than Julie. That's just how things work when chronic fatigue becomes your boss. Like a doctor on call, when that biological "beeper" goes off, the decision is made for you.
There are definitely times this leaves me feeling more than a little useless. I mean, come on, I'm still the same person inside. When my friends need me, I still want to be there for them. When the house is dirty, I still want to get up and clean it. I still want to work hard and be involved with my business. I still want to be out volunteering, teaching others about the bible, visiting friends, spending time with my dad. All of those things still matter to me and are still a part of who I am. So when I can't do them, which is most of the time, well, it's got to make a person wonder. Realizing that someone you care about doesn't know if you can't be there for them or just don't want to be hurts - not because of how it makes you feel, but because you can tell how they feel and you want to make it better but CFS says, "Uh, nope! You're just going to sit here on this couch and watch TV because that's all I'm going to let you do. Haha!" Which is why it meant so much to me when a dear friend sent me a sweet message the other day. I know she has been affected by my illness frequently and struggles sometimes to understand why. Her message acknowledging what I am challenged with and apologizing for the times when she forgets really took some weight off my shoulders. I'm not at all ashamed to admit I teared up more than a little!
If you know someone who suffers from a so-called invisible illness like CFS or anxiety, depression, etc, please remember that to some even the smallest words can matter, especially the good ones! We need to be reminded once in a while that our illness does not define who we are, that our limitations do not make our abilities matter less, and especially that we are not useless! Thank you to my friend who took the time to remind me of this, even if it wasn't in those words exactly. What you said in that message made life a little easier to deal with. And for someone with CFS, a little easier is a huge deal!
And with that thought in mind, it's probably time for me to sign off and head for bed. Contrary to popular opinion, chronic fatigue often means sleeping less, not more, but ah well; thus is burden of the insomniac. I should at least pretend to try to sleep. You know what they say: No rest for the weary. (Can I blame the bad jokes on CFS? No? That's not actually an official symptom? Oh well.) But do not worry my loyal readers (imaginary though you may be), I will be back as soon as my "boss" lets me return. In the meantime, thank you for letting my words matter - or at least putting up with my ramblings!
Thought of the day: I suffer from CFS, but I am not a CFS sufferer. It is merely an element in my life and not a definition of who I am. Our challenges, differences, and limitations do not define who we are unless we choose to let them.
Seriously, though, I think for me one of the hardest things to be at peace with has been the realization that I don't really get to set my own schedule anymore. Just because I want to go out with my friends or call my mom or accomplish some other goal doesn't mean I am going to get to do it when and how it should be done. Staying in touch with friends is really hard when you don't have the energy to pick up the phone and talk. It helps that some of the people around me try to be understanding, but it really isn't easy to understand something like CFS unless you live it. Honestly, I'm not offended when someone doesn't get; if anything it is a good thing because it means their lives haven't been invaded by this terrible beast. For the sufferer, though, it can be exhausting and discouraging feeling like you need to explain again why you couldn't answer the phone, or why you couldn't go out with Sam on Sunday but somehow managed to go out with Julie on Monday. No, Sam, you aren't less important than Julie. That's just how things work when chronic fatigue becomes your boss. Like a doctor on call, when that biological "beeper" goes off, the decision is made for you.
There are definitely times this leaves me feeling more than a little useless. I mean, come on, I'm still the same person inside. When my friends need me, I still want to be there for them. When the house is dirty, I still want to get up and clean it. I still want to work hard and be involved with my business. I still want to be out volunteering, teaching others about the bible, visiting friends, spending time with my dad. All of those things still matter to me and are still a part of who I am. So when I can't do them, which is most of the time, well, it's got to make a person wonder. Realizing that someone you care about doesn't know if you can't be there for them or just don't want to be hurts - not because of how it makes you feel, but because you can tell how they feel and you want to make it better but CFS says, "Uh, nope! You're just going to sit here on this couch and watch TV because that's all I'm going to let you do. Haha!" Which is why it meant so much to me when a dear friend sent me a sweet message the other day. I know she has been affected by my illness frequently and struggles sometimes to understand why. Her message acknowledging what I am challenged with and apologizing for the times when she forgets really took some weight off my shoulders. I'm not at all ashamed to admit I teared up more than a little!
If you know someone who suffers from a so-called invisible illness like CFS or anxiety, depression, etc, please remember that to some even the smallest words can matter, especially the good ones! We need to be reminded once in a while that our illness does not define who we are, that our limitations do not make our abilities matter less, and especially that we are not useless! Thank you to my friend who took the time to remind me of this, even if it wasn't in those words exactly. What you said in that message made life a little easier to deal with. And for someone with CFS, a little easier is a huge deal!
And with that thought in mind, it's probably time for me to sign off and head for bed. Contrary to popular opinion, chronic fatigue often means sleeping less, not more, but ah well; thus is burden of the insomniac. I should at least pretend to try to sleep. You know what they say: No rest for the weary. (Can I blame the bad jokes on CFS? No? That's not actually an official symptom? Oh well.) But do not worry my loyal readers (imaginary though you may be), I will be back as soon as my "boss" lets me return. In the meantime, thank you for letting my words matter - or at least putting up with my ramblings!
Thought of the day: I suffer from CFS, but I am not a CFS sufferer. It is merely an element in my life and not a definition of who I am. Our challenges, differences, and limitations do not define who we are unless we choose to let them.
Thursday, December 12, 2013
The first one
So I woke up today feeling great...
Okay, that sounds like a pretty good opening line to the best fictional short story ever! Hi, I'm Rachelle, and I honestly have to admit that I cannot remember the last time I woke up feeling great. That's just part of the deal for me now that Chronic Fatigue Syndrome has become a part of my life. Now, I can't say I have never woken up feeling happy; in fact, I rarely wake up in a bad mood - I just wake up feeling like I should be in a bad mood.
For the last three years I have been coping with CFS (Chronic Fatigue Syndrome). Of course, in the beginning I didn't know that's why I was sick, which is unfortunate because it meant that in the first year of my illness I gave in to the "just buck up and push through it - what doesn't kill you will make you stronger" way of thinking. As a result, I ended up much sicker than I ever needed to be. Since then I have learned to listen to and trust my body much more than I used to, but it can still be a crazy journey dealing with an illness like CFS. I think that for me the hardest thing is that things I used to love, the passions and activities that brought meaning to my life and let me express and define who I am, have become difficult, infrequent, even unenjoyable or impossible. I don't know when I last wrote a poem or short story, I can list on one finger how many drawings I have completed in the last few years, and I don't even remember where my paints are. The dust on my piano doesn't make me sneeze, but that's only because it hardly ever gets disturbed. Even singing along to a song takes more energy than my body can handle. I'd been meaning to start up this blog for the last year at least, and - well, I'll let the date stamp speak for itself.
It's not that any of those things are less important to me than they used to be. If anything, not having the physical energy to do what I love makes me love it more - and miss it more. But I've had to accept that, for me, having 24 hours in a day does not mean I have 24 hours of energy. Or sometimes even two, for that matter! I had to stop thinking about time management and start thinking around the concept of energy management. The good news is, it doesn't matter how much time or energy you have to put into what you love, as long as you have something to love. And since love is a choice, anyone can be happy no matter their circumstances! Realizing this doesn't always make it better, but it gets me through the moments that are less than okay, and sometimes getting through is enough, too.
Well, sad as it may be, that's as much as I have to give for today. Hmm, maybe this CFS isn't so bad... After all, being too tired to talk for a long time means I can't talk for a long time. Believe me, that can be a good thing, just ask anyone who's known me for a while! *insert courtesy laugh here*
Okay, that sounds like a pretty good opening line to the best fictional short story ever! Hi, I'm Rachelle, and I honestly have to admit that I cannot remember the last time I woke up feeling great. That's just part of the deal for me now that Chronic Fatigue Syndrome has become a part of my life. Now, I can't say I have never woken up feeling happy; in fact, I rarely wake up in a bad mood - I just wake up feeling like I should be in a bad mood.
For the last three years I have been coping with CFS (Chronic Fatigue Syndrome). Of course, in the beginning I didn't know that's why I was sick, which is unfortunate because it meant that in the first year of my illness I gave in to the "just buck up and push through it - what doesn't kill you will make you stronger" way of thinking. As a result, I ended up much sicker than I ever needed to be. Since then I have learned to listen to and trust my body much more than I used to, but it can still be a crazy journey dealing with an illness like CFS. I think that for me the hardest thing is that things I used to love, the passions and activities that brought meaning to my life and let me express and define who I am, have become difficult, infrequent, even unenjoyable or impossible. I don't know when I last wrote a poem or short story, I can list on one finger how many drawings I have completed in the last few years, and I don't even remember where my paints are. The dust on my piano doesn't make me sneeze, but that's only because it hardly ever gets disturbed. Even singing along to a song takes more energy than my body can handle. I'd been meaning to start up this blog for the last year at least, and - well, I'll let the date stamp speak for itself.
It's not that any of those things are less important to me than they used to be. If anything, not having the physical energy to do what I love makes me love it more - and miss it more. But I've had to accept that, for me, having 24 hours in a day does not mean I have 24 hours of energy. Or sometimes even two, for that matter! I had to stop thinking about time management and start thinking around the concept of energy management. The good news is, it doesn't matter how much time or energy you have to put into what you love, as long as you have something to love. And since love is a choice, anyone can be happy no matter their circumstances! Realizing this doesn't always make it better, but it gets me through the moments that are less than okay, and sometimes getting through is enough, too.
Well, sad as it may be, that's as much as I have to give for today. Hmm, maybe this CFS isn't so bad... After all, being too tired to talk for a long time means I can't talk for a long time. Believe me, that can be a good thing, just ask anyone who's known me for a while! *insert courtesy laugh here*
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