I haven't posted on here in a hot minute and I do apologise for that. I've been incredibly uninspired lately.
But I certainly have not been short on thoughts in the slightest. I've been thinking a lot about my struggles with depression as they've been working me. hard.
Finding things to be thankful for has helped tremendously, even if I still don't necessarily feel like wearing a smile all day after making my list, I feel at peace within myself as a result.
Today, I am thankful for people in my life who A) Love me enough to work on my car and B) know how to do such things. That when I get down and discouraged and feel no reprieve in sight, something works and makes things feel not quite so bleak.
Sunday, April 6, 2014
Sunday, March 30, 2014
A Gritty, Comprehensive Guide to Caring for a Spoonie (the condensed edition)
This is a topic near and dear to my heart as I have a chronic autoimmune disease. Oftentimes people don't understand the struggle, which is totally expected but I've noticed it's rarely touched on all the same. So, coming from your friendly neighbourhood Spoonie (read all about Spoon Theory here) and with the help of a couple other Spoonies, I've compiled some handy dandy tips for tending to and possibly better understanding your chronically ill loved one.
1. Just because you can't see it, doesn't mean it's not there. The reality with a lot of us is the disease we suffer from doesn't yield completely obvious physical symptoms so we feel like our pain is pretty invisible and sometimes even that we shouldn't feel the way we do because you, the bystander, can't see the throbbing joints or the upset stomach or the way the medication reacts with our body chemistry, and the like.
My friend Samantha who has diabetes put it brilliantly: "Invisibility is a huge thing with having diabetes, or any chronic illness where it is not blatantly obvious to others. Sure, people see me testing my blood sugar once in a while, but they don't see how much that really effects me. They don't see the gallons of blood (literally) that I have to sacrifice throughout the years in order to just eat. They can't see when my eyes are blurry, or when my stomach hurts from ketones, or when I'm low. They can't feel the confusion and brain fog I have when I'm low, and have to pretend that everything is okay. So yes, I feel invisible. And because my disease is invisible to the naked eye, that makes my pain feel invisible."
2. Understand that if there are preventative measures that can be taken, they're probably already being taken. Autoimmune diseases tend to be rather fickle. You could do one thing that alleviates pain or discomfort from one symptom and it doesn't work as effectively as the last time you tried it. Or medication isn't something that helps this particular symptom or what have you. There are so many variables that can contribute to flares or episodes.
Saying things like:
"did you take something for it?"
"Maybe if you slept more.."
"If you were more active..."
No. Just stop. Do not pass Go, do not collect $200.
3. Stop pretending like your Spoonie's condition will improve by some magic cocktail of medication and pixie dust. coming from a fellow chronic sufferer: "I wish that people would realize that I might not ever get better.. I hate hearing people say, get better soon or feel better." Chronic means "habitual, recurring, constant, inveterate", understand that remission in chronic pain is especially unlikely. Hearing things like "oh, you'll feel better when.." or "things will get better when.." is incredibly exasperating, especially when all options have probably been exhausted. acknowledge and be respectful of your Spoonie's pain.
4. If you see something that can be done, do it. Coming from a family friend : "Don't ask the person (or family) what they need--they often are so overwhelmed that they don't know or can't pick just one thing. Be proactive and do something for them--mow the lawn, walk the dog, take the kids to the park, bring dinner without being asked, wash their dishes, clothes, mop the floor, take the person for a drive--just to get out of the house."
5. Let your Spoonie do what they are capable of, especially if they feel well enough to do it. my friend Christina explains it excellently: "don’t try to stop me from doing something if I’m tired or hurting or low on spoons. I need to keep doing the things I’m able to so that I can feel like I’m not completely helpless."
6. by the same token (also from Christina): "accept when I say I can’t do something, and either do it for me if it needs to be done right away (cleaning the litter box or preparing food) or leave it for when I can do it (folding clothes or sweeping and mopping)."
Kind of goes hand in hand with the "be proactive" point. Be graceful and understanding and helpful. we need lots of help to make things run smoothly.
7. We're not using our sickness to our advantage to avoid responsibility or activities nor are we faking it. I mean, of course, there's always gonna be someone somewhere doing it but a majority of us genuinely wish we could do all the things a regular functioning person can and attend every event. we just can't. we're not being standoffish. I know for me personally, it makes me sad and a little angry at myself if I can't make it to something or hang out or do whatever I want when I want. We want to be able to but we really just are not able sometimes.
8. Oftentimes just sitting and hanging with your Spoonie for the night instead of asking them out makes all the difference. think about it, they're in pain more often than not. why not watch a movie with them at their house? that kind of thoughtfulness makes all the difference in the world. Even sometimes receiving a text or a phone call because someone has been thinking about you is a huge pick-me-up.
9. ask questions if you don't understand or don't know but never blatantly assume anything. even if you're a friggin' physician, you may know the science behind an illness but you don't understand the emotional toll it takes on the individual from their point of view. ask them about it. most are happy to explain and assist in shedding light on their daily struggles.
10. Relating to a Spoonie via a friend or relative who's chronically ill is a good start but try to be there for the individual and their personal experience. "oh my grandma’s dead obese cat’s grandma’s uncle’s brother’s dead grandpa who was obese had diabetes too." Nope. just nope. Even an incredibly peace loving, non-violent person will wanna punch you in the gut for that. On the other hand, it helps to know that the sufferer's disease has awareness.
11. Don't minimize the small struggles a person with chronic illness faces day to day. all those small hurdles are a giant obstacle in the grand scheme of things. they add up quickly. we have to budget our energy and wellness like someone would a budget their income.
12. DO NOT LAUGH AT A SPOONIE BUT LAUGH WITH THEM. Jokes can be hurtful but understanding their particular sense of humour to cope can be a great support.
13. Just be understanding. Extend the same kindnesses you'd want extended to you. be patient, be available as you're able, be open, just listen. my ultimate advice to anyone is think about it if you were the one dealing with -insert illness here-. it's like dragging a ball and chain around everywhere you go. it's always there. it makes you feel uncomfortable and self conscious sometimes. be courteous.
And shout out to all the friends and people caring for a loved one who deals with chronic illness/chronic pain, you are our rocks, our sanity, our grace, and our bodies when we're running low, running on fumes, unable, or unstable. We appreciate your help and constant support whether it's giving us a hug or doing everything for us. It takes a lot of guts and moxy to do what you do. hats off to you.
1. Just because you can't see it, doesn't mean it's not there. The reality with a lot of us is the disease we suffer from doesn't yield completely obvious physical symptoms so we feel like our pain is pretty invisible and sometimes even that we shouldn't feel the way we do because you, the bystander, can't see the throbbing joints or the upset stomach or the way the medication reacts with our body chemistry, and the like.
My friend Samantha who has diabetes put it brilliantly: "Invisibility is a huge thing with having diabetes, or any chronic illness where it is not blatantly obvious to others. Sure, people see me testing my blood sugar once in a while, but they don't see how much that really effects me. They don't see the gallons of blood (literally) that I have to sacrifice throughout the years in order to just eat. They can't see when my eyes are blurry, or when my stomach hurts from ketones, or when I'm low. They can't feel the confusion and brain fog I have when I'm low, and have to pretend that everything is okay. So yes, I feel invisible. And because my disease is invisible to the naked eye, that makes my pain feel invisible."
2. Understand that if there are preventative measures that can be taken, they're probably already being taken. Autoimmune diseases tend to be rather fickle. You could do one thing that alleviates pain or discomfort from one symptom and it doesn't work as effectively as the last time you tried it. Or medication isn't something that helps this particular symptom or what have you. There are so many variables that can contribute to flares or episodes.
Saying things like:
"did you take something for it?"
"Maybe if you slept more.."
"If you were more active..."
No. Just stop. Do not pass Go, do not collect $200.
3. Stop pretending like your Spoonie's condition will improve by some magic cocktail of medication and pixie dust. coming from a fellow chronic sufferer: "I wish that people would realize that I might not ever get better.. I hate hearing people say, get better soon or feel better." Chronic means "habitual, recurring, constant, inveterate", understand that remission in chronic pain is especially unlikely. Hearing things like "oh, you'll feel better when.." or "things will get better when.." is incredibly exasperating, especially when all options have probably been exhausted. acknowledge and be respectful of your Spoonie's pain.
4. If you see something that can be done, do it. Coming from a family friend : "Don't ask the person (or family) what they need--they often are so overwhelmed that they don't know or can't pick just one thing. Be proactive and do something for them--mow the lawn, walk the dog, take the kids to the park, bring dinner without being asked, wash their dishes, clothes, mop the floor, take the person for a drive--just to get out of the house."
5. Let your Spoonie do what they are capable of, especially if they feel well enough to do it. my friend Christina explains it excellently: "don’t try to stop me from doing something if I’m tired or hurting or low on spoons. I need to keep doing the things I’m able to so that I can feel like I’m not completely helpless."
6. by the same token (also from Christina): "accept when I say I can’t do something, and either do it for me if it needs to be done right away (cleaning the litter box or preparing food) or leave it for when I can do it (folding clothes or sweeping and mopping)."
Kind of goes hand in hand with the "be proactive" point. Be graceful and understanding and helpful. we need lots of help to make things run smoothly.
7. We're not using our sickness to our advantage to avoid responsibility or activities nor are we faking it. I mean, of course, there's always gonna be someone somewhere doing it but a majority of us genuinely wish we could do all the things a regular functioning person can and attend every event. we just can't. we're not being standoffish. I know for me personally, it makes me sad and a little angry at myself if I can't make it to something or hang out or do whatever I want when I want. We want to be able to but we really just are not able sometimes.
8. Oftentimes just sitting and hanging with your Spoonie for the night instead of asking them out makes all the difference. think about it, they're in pain more often than not. why not watch a movie with them at their house? that kind of thoughtfulness makes all the difference in the world. Even sometimes receiving a text or a phone call because someone has been thinking about you is a huge pick-me-up.
9. ask questions if you don't understand or don't know but never blatantly assume anything. even if you're a friggin' physician, you may know the science behind an illness but you don't understand the emotional toll it takes on the individual from their point of view. ask them about it. most are happy to explain and assist in shedding light on their daily struggles.
10. Relating to a Spoonie via a friend or relative who's chronically ill is a good start but try to be there for the individual and their personal experience. "oh my grandma’s dead obese cat’s grandma’s uncle’s brother’s dead grandpa who was obese had diabetes too." Nope. just nope. Even an incredibly peace loving, non-violent person will wanna punch you in the gut for that. On the other hand, it helps to know that the sufferer's disease has awareness.
11. Don't minimize the small struggles a person with chronic illness faces day to day. all those small hurdles are a giant obstacle in the grand scheme of things. they add up quickly. we have to budget our energy and wellness like someone would a budget their income.
12. DO NOT LAUGH AT A SPOONIE BUT LAUGH WITH THEM. Jokes can be hurtful but understanding their particular sense of humour to cope can be a great support.
13. Just be understanding. Extend the same kindnesses you'd want extended to you. be patient, be available as you're able, be open, just listen. my ultimate advice to anyone is think about it if you were the one dealing with -insert illness here-. it's like dragging a ball and chain around everywhere you go. it's always there. it makes you feel uncomfortable and self conscious sometimes. be courteous.
And shout out to all the friends and people caring for a loved one who deals with chronic illness/chronic pain, you are our rocks, our sanity, our grace, and our bodies when we're running low, running on fumes, unable, or unstable. We appreciate your help and constant support whether it's giving us a hug or doing everything for us. It takes a lot of guts and moxy to do what you do. hats off to you.
Friday, February 28, 2014
what's my boat?
Sometimes I think because God places me somewhere or in something, I think it's going to be smooth sailing (HA! I made a funny! get it? boats..sailing..nevermind.) from there on out. And honestly, I have no idea where I got this notion because it is so often hideously and laughably wrong. I kid you not, when I have a big idea or think I'm right smack dab in the middle of God's bull's eye, I get excited and tend to think it's all going to come out picture perfect. Like when people attempt projects they see on Pinterest and the aftermath is only a near terrifying (often hilariously awful) prototype. I'm pretty artsy, not really craftsy, and believe me, there is a huge difference between the two. I certainly believe people can be one or the other or both. I'm absolutely not both. So I have this great vision of what I want to do in my head and it ends up looking something like this :
And before, that has most certainly been the turn out of things I've done with the best of intentions. I so happen to be in a place now where in I don't have even a peephole idea of what the heck I'm supposed to be doing in any respect, be it service in church, social interactions, what have you. My church just ended a series about Noah, all about building a better life and what that means and at my small group, we talked about what our "boat" is that we're "building" in our own spiritual walks. And I honestly couldn't answer at first for not knowing exactly what that is! I brought this up to the group and one person said something along the lines of "walking out in faith often times is the start." and I thought that was ingenious. Sometimes, perhaps, you're in a season where you're just holding you hands out, palms up, saying "put me where you want me" and I didn't realise how dangerous of a proposition that was until my answer was "move to the coast". Knowing how I get set in my ways, knowing I was leaving comfort and familiarity. I heard people talk about how difficult and awkward it is and sort of laughed them off, honestly! Thinking I'd be "different". Nope.
I'm in the midst of a strange transition and honestly, sometimes I'm still pretty anxious about meeting people and where I fit and how I fit in it. But I'm learning half the battle is to be open to possibilities. I'll soon be working a job doing something I've never done or thought of doing and I know its where God wants me. That's what makes me excited. That there's room to grow and there's potential for impact. That I get the chance to change and maybe that's my "boat", being actively willing. Regardless of how much it seems like I'm screwing up or not exactly "skilled" in the place that He has me. Or if I'm just generally clueless. I'm starting to think being clueless isn't the worst position to be in.
And before, that has most certainly been the turn out of things I've done with the best of intentions. I so happen to be in a place now where in I don't have even a peephole idea of what the heck I'm supposed to be doing in any respect, be it service in church, social interactions, what have you. My church just ended a series about Noah, all about building a better life and what that means and at my small group, we talked about what our "boat" is that we're "building" in our own spiritual walks. And I honestly couldn't answer at first for not knowing exactly what that is! I brought this up to the group and one person said something along the lines of "walking out in faith often times is the start." and I thought that was ingenious. Sometimes, perhaps, you're in a season where you're just holding you hands out, palms up, saying "put me where you want me" and I didn't realise how dangerous of a proposition that was until my answer was "move to the coast". Knowing how I get set in my ways, knowing I was leaving comfort and familiarity. I heard people talk about how difficult and awkward it is and sort of laughed them off, honestly! Thinking I'd be "different". Nope.
I'm in the midst of a strange transition and honestly, sometimes I'm still pretty anxious about meeting people and where I fit and how I fit in it. But I'm learning half the battle is to be open to possibilities. I'll soon be working a job doing something I've never done or thought of doing and I know its where God wants me. That's what makes me excited. That there's room to grow and there's potential for impact. That I get the chance to change and maybe that's my "boat", being actively willing. Regardless of how much it seems like I'm screwing up or not exactly "skilled" in the place that He has me. Or if I'm just generally clueless. I'm starting to think being clueless isn't the worst position to be in.
Sunday, February 23, 2014
a moment among moments 001
I've been thinking an awful lot about an awful lot of things. One being thankfulness, how I struggle with being grateful for what I have and not so much in the way of material- money, status, possessions, ect., more so in the sense that I feel I am made of so little. I am made of this body, this skin that seems too pasty to see the light of day, these eyes that feel impossibly fierce, this tongue that doesn't watch itself enough, this frame that takes up so much space. Insecurity ravages me and leaves me bare and scrambling for somewhere to hide because something in me truly believes that if I show what I really am, I won't be deemed acceptable. The reality, I suppose, is that I'm not. But I have been shown grace and mercy which make me acceptable. He smiled upon me and sometimes I forget how ungrateful I am for that alone. for being seen by the One who didn't have to see me. But He did. He put this personality in this body to be open arms and an endlessly open, bleeding heart for hurting people. I'm not entirely sure of where I fit in this large equation, this grand scape of life happening all around me. I want to be completely immersed in every beautiful thing God has created and has set man up to wield. All the sights, sounds, lights, intricate personalities trapped inside these bodies just like me.
I've had this song stuck inside my head for a few days now. It's called "Saturn" by Sleeping At Last off of their Atlas: Space 2 record and the two lines that have so feverishly beat up against the walls of my mind are:
" I couldn’t help but ask
For you to say it all again.
I tried to write it down
But I could never find a pen
I’d give anything to hear
You say it one more time,
That the universe was made
Just to be seen by my eyes"
and
"how rare and beautiful it is to even exist"
I've felt the orchestra vibrations in my ribcage, singing over and over, hearing Him sing to my fragile heart and mind that the universe was made knowing I'd appreciate its beauty. That it was made to be seen by my eyes.
I've had this song stuck inside my head for a few days now. It's called "Saturn" by Sleeping At Last off of their Atlas: Space 2 record and the two lines that have so feverishly beat up against the walls of my mind are:
" I couldn’t help but ask
For you to say it all again.
I tried to write it down
But I could never find a pen
I’d give anything to hear
You say it one more time,
That the universe was made
Just to be seen by my eyes"
and
"how rare and beautiful it is to even exist"
I've felt the orchestra vibrations in my ribcage, singing over and over, hearing Him sing to my fragile heart and mind that the universe was made knowing I'd appreciate its beauty. That it was made to be seen by my eyes.
Wednesday, February 19, 2014
the art of weakness
I speculate things a ton. I drag thoughts on endless races against myself in ruts for so long and hard you'd think I was an excellent runner in real life (I'm not, I'm awful at it actually). It's a quirk I'm currently learning to take control of, but that's a blurb for another day. All that to say, this has been on my mind quite a bit lately.
If you've been a Christian for any amount of time, you've probably seen the mantra-like quotation of Philippians 4:13 plastered on coffee mugs, decorative plaques, canvas bags, t-shirts, dog sweaters, ect. which is wonderful if that's what gets you through your moments. For me personally (and I'd like to believe I'm not alone in this) it does nothing to boost my morale. At least it didn't until I looked a couple verses back where in he states "(11)Not that I am speaking of being in need, for I have learned in whatever situation I am to be content. (12)I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need." and then he makes the famous remark in verse 13 "I can do all things through him who strengthens me". Now, hear me out, because I'm so "deep" and "artsy" and "spiritual", this line lights a spark in me and I get annoyed with how often it's so automatically spouted.
Paul was in the bleakest of circumstances, he was in prison for cripes' sake! I don't know how most people in this day and age would react to imprisonment for the cause, but I doubt it'd be cozy and "content in every circumstance". However, by the same token, I think it's unfair to compare scars and refuse to acknowledge that all pain, no matter how small it seems from your perspective, deserves and demands to be felt in its entirety. But so often we get hung up on and stay hung up on the stress of paying bills, coping with the world around us, dealing with difficult family situations, sickness, school, work, ect. It's all very cumbersome and traumatic if you think about all the things bodies and minds are forced to endure day in and day out.
Our design was expertly constructed, the Creator definitely knew that we would have to withstand such complications. He also understands that we are overwhelmed. I'm certainly glad that God mandated from the beginning that Paul would write that letter to the Philippians, knowing we'd face the challenges and struggles that we do. Knowing that I would struggle with depression and anxiety, he made sure to make it known to me that despite all these things I would deal with, he is amidst the weakness. Not only the flimsy moments of weakness where I'm frustrated in traffic but moments of backbreaking, heart-wrenching, I'm-bawling-uncontrolably-in-the-car-I-don't-know-why-I'm-even-alive weakness. Those are the moments I'm referring to. The ones where your spirit is so grieved you feel it in your marrow. Those are the moments where I have to remind myself that admitting I'm weak in every moment is crucial, not just the ones where I feel my fleshy, ache-y humanity. The ones where I feel like I'm holding up okay are just as important.
I'm so stubborn and prideful as a rule, I don't like accepting help and I don't like admitting I'm emotional or fragile or any kind of indicator that would hint at me being incapable. That's definitely a kink in my frame that's being smoothed (feels more like flattening most days) out. I feel like lately, those moments of grief are closer and closer together and I'm having to invite God into my situation moment by moment saying "I don't want to go to this meeting, I don't want to go grocery shopping, I don't want to cook, I don't want to do anything but lie in bed. You know I have things to do, be with me today, hold me up."
Even asking such things of the Creator of the universe is difficult for me because I'm so prideful. I want to do it on my own, but pride itself is weakness. Pride is nothing if I'm trying to crow in my own glory. There's no glory to be had. All of it is found in Jesus and learning to trust, not even more, but differently.
Tuesday, February 18, 2014
An Introduction: I'm not in the swing of things but what I really mean is..
I'm rejoining this side of the blogging universe for the first time in a few years, I'm more often a raw, bleeding out poet type (yeah yeah yeah, the tortured artist or something). I want desperately to document what God is doing within and around me.
To start with, here are a few arbitrary snippets of myself:
-I am a complicated creature of habit and simple pleasures
-I forget about my coffee until it's lukewarm most mornings and drink it anyway
-Music is essential to my comings and goings and fixations fluctuate frequently
-I have about 5 tubes of Burt's Bees lip balm, all opened and being used
-I lose things pretty regularly
-I really love raw vegetables. like really really.
-I appreciate a kooky, deadpan sense of humour
-I secretly would like to sing on Broadway one day
-I'm the most easily distracted person on the face of the planet
-I love books, words are important to me
-I'm really shy and socially awkward and introverted, definitely makes for interesting times in trying to establish friendships
I just moved a little less than a month ago from a small town in central North Carolina to another small town closer to the coast of North Carolina and am trying to figure out my place. I suppose that's what everyone is desperately trying to do in any setting. I've had a long period of spiritual rebellion up until this point and I have finally given up some level of "doing what I want". I'm in the process of learning so much and realising what all is "wrong" with me (besides the, you know, being human thing). I love and hate this place, it brings me face to face with everything I hate about myself. All the ugly, all the unsightly kinks in my spine, the chips on my shoulder, all my bruises exposed. I love it because I know this is how I get better, this is where I become more like Jesus. I hate it because I hate how ugly I am, I hate how prone I am to forgetfulness, I forget my place so often it's painful. But I'm glad these things are coming to light and I look forward to sharing my thoughts with you, the reader. Stick with me! We've got lots of worthwhile and dirty work to do.
xo Eden-Joy
To start with, here are a few arbitrary snippets of myself:
-I am a complicated creature of habit and simple pleasures
-I forget about my coffee until it's lukewarm most mornings and drink it anyway
-Music is essential to my comings and goings and fixations fluctuate frequently
-I have about 5 tubes of Burt's Bees lip balm, all opened and being used
-I lose things pretty regularly
-I really love raw vegetables. like really really.
-I appreciate a kooky, deadpan sense of humour
-I secretly would like to sing on Broadway one day
-I'm the most easily distracted person on the face of the planet
-I love books, words are important to me
-I'm really shy and socially awkward and introverted, definitely makes for interesting times in trying to establish friendships
I just moved a little less than a month ago from a small town in central North Carolina to another small town closer to the coast of North Carolina and am trying to figure out my place. I suppose that's what everyone is desperately trying to do in any setting. I've had a long period of spiritual rebellion up until this point and I have finally given up some level of "doing what I want". I'm in the process of learning so much and realising what all is "wrong" with me (besides the, you know, being human thing). I love and hate this place, it brings me face to face with everything I hate about myself. All the ugly, all the unsightly kinks in my spine, the chips on my shoulder, all my bruises exposed. I love it because I know this is how I get better, this is where I become more like Jesus. I hate it because I hate how ugly I am, I hate how prone I am to forgetfulness, I forget my place so often it's painful. But I'm glad these things are coming to light and I look forward to sharing my thoughts with you, the reader. Stick with me! We've got lots of worthwhile and dirty work to do.
xo Eden-Joy
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