And the walls kept tumbling down
In the city that we love
Great clouds roll over the hills
Bringing darkness from above
But if you close your eyes,
Does it almost feel like nothing changed at all?
And if you close your eyes,
Does it almost feel like you've been here before?
How am I gonna be an optimist about this?
-- Pompeii by Bastille
So my friend Ethan sends me a bunch of music suggestions.. Songs I should check out, because he thinks I might like them. He sent this one to me Sunday night. I instantly loved it. The lyrics are great, I love the melody and harmony... It's complex, but simple. I love it in everyway. I haven't stopped listening to it since then.
It's got a sense of hope to it that I particularly enjoy. Sometimes it's really hard, when dealign with a chronic illness, to remain hopeful and optimistic. Many days, that's just out of the question.
Maybe you're drowning in pain and can hardly stay awake in classs you're so sleep deprived. Maybe you're in the hospital again for who knows how long this time, or maybe you just had a major surgery that got infected.
Even little things can overwhelm us. An extra homework assignment, an argument with a friend or family member, or even something like not being able to use your heating pad can send someone with chronic illness.
So how do we remain so optimistic?
It's got a sense of hope to it that I particularly enjoy. Sometimes it's really hard, when dealign with a chronic illness, to remain hopeful and optimistic. Many days, that's just out of the question.
Maybe you're drowning in pain and can hardly stay awake in classs you're so sleep deprived. Maybe you're in the hospital again for who knows how long this time, or maybe you just had a major surgery that got infected.
Even little things can overwhelm us. An extra homework assignment, an argument with a friend or family member, or even something like not being able to use your heating pad can send someone with chronic illness.
So how do we remain so optimistic?
Found on tumblr.
This is why. My life is far from perfect. I'm in pain all of the time, but I am still very, very blessed. I can't let myself ignore that fact. I don't have the most stable legs, but I have legs. I have trouble walking, but I'm not wheel chair bound. I have trouble sleeping, but at least I have a roof oer my head and a bed to sleep in.
The truth of the matter is I will probably always be in pain. I'm inching up on 7 years of chronic pain, and it usually doesn't go into remission after that, so I have to do all I can to stay optimistic.
I'm sure all of my spoonie friends understand me. It's harder than hell, the life we live. Day in and day out, we don't know what's coming. Sometimes everything changes minute by minute. I think it's interesting how amazed "normal" or "healthy" people get with us dealing with this kind of stuff. I hear " I don't know how you do it" quite a lot. Truth is, I don't really know either. Ten years ago when I was dreaming of being and adult, I never imagined I could be in this much pain. But you get used to it.
You get used to the pain (in a sense)
You learn how to cope
You learn how to function on little to no sleep.
And through it all, we look the same, or even better, than some of you "healthy" people.
I was thinking about different ways to help us "spoonies" stay optimistic. So, here's a 5-step "guide" to different things that help me stay positive.
1. Surround yourself with supportive people.
When you're constantly surrounded by negative people who don't attempt to understand your situation, it will be hard to stay happy. I'm lucky, a good majority of my
friends, family, and band/choir directors do their best to understand my situation, and do all that they can to help me. I know that's not the case with many people living with invisible illness. But do everythign you can to help yourself and be your own advocate. Join support groups, make connections with other people with your condition on twitter, facebook, or instagram. I have met a few people through twitter that are now like a family to me. They all have RSD/CRPS or Fibromyalgia, occasionally, I chat with someone who has other types of invisible illness. It's great to be able to talk about various things together via twitter.
2. Find an activity that won't waste too many spoons, but keeps you happy.
I am not the best at this one. I have a HUGE passion for music, and it hurts me tmore than helps me most days. Percussion uses way too many of my typical daily amount of "spoons". Especially when I've been at school all day. Choir doesn't actualyl take too many spoons. I still need a lot of energy for it, but the feelign I get from performing can help almost "replenish" the spoons I lose. Not everyone has access to these kinds of activities, though. I know that. If you like music, see if you can take up an instrument. Start a music blog, and review all different styles of music. Maybe you could try painting or drawing. Anything you find that makes you feel better, or more accomplished, could probably help you "replenish" spoons. I've found that works for me.
3. Find someone you can confide everything in.
Everyone needs someone to talk to. I have one of the best peopel in the world to talk to. He's in choir with me - which is already like my family - and he's a spoonie. We've only been talking on a regular basis for a couple months, but I know I can trust him with anything. He actually understands what I am feeling unlike a lot of my friends. He knows what it's like trying to maintain a good relationship with Christ through this battle. He understands the true comlexity of life, and the extra tension placed on someone with chronic illness' shoulders. He's been a great help these past few months, and I know we'll be friends for a long time.
4. Learn to laugh about your disease.
This took me forever to learn. For the longest time ever, I couldn't find any humor in anything. Everything about my pain offended me. I couldn't figure out why I looked online and saw people making fun of themselves or something about it. Then I realized it was a coping mechanism. And it's helped so much. Now, I call myself a human barometer. I can tell when rain is coming DAYS before it arrives. Sometimes before the weather station reports it. Sometimes, our memory is so bad we could plan our own surprise party. My favorites are from chronic illness cat tumblr. There are some pretty humorous things on that site. The best part is, normal or "healthy" people don't understand what the heck we're talking about. It's kind of like a giant inside joke. :]
5. Have faith and be hopeful.
This is the hardest part, I think. Most days you won't want to have faith or hope. You'll want to sink down with no return. Your mind will tell you you'll never be okay again. You'll want to stop fighting, some may even want to stop living. But you have to keep fighting. Any day could be the day that brings a new treatment. Any day could bring a cure. Any day could be the day you go into remission. When you have this illness that never goes away, sometimes all you're left with is your faith and hope. You're stripped of feeling healthy and happy. You have to remind yourself that, even though your life is hard right now, you just have to keep on keeping on. Have faith. Have hope.
I know it's hard. I'm in the same battle as all of you. But together, we can do this. Together we fight, hope, p
The truth of the matter is I will probably always be in pain. I'm inching up on 7 years of chronic pain, and it usually doesn't go into remission after that, so I have to do all I can to stay optimistic.
I'm sure all of my spoonie friends understand me. It's harder than hell, the life we live. Day in and day out, we don't know what's coming. Sometimes everything changes minute by minute. I think it's interesting how amazed "normal" or "healthy" people get with us dealing with this kind of stuff. I hear " I don't know how you do it" quite a lot. Truth is, I don't really know either. Ten years ago when I was dreaming of being and adult, I never imagined I could be in this much pain. But you get used to it.
You get used to the pain (in a sense)
You learn how to cope
You learn how to function on little to no sleep.
And through it all, we look the same, or even better, than some of you "healthy" people.
I was thinking about different ways to help us "spoonies" stay optimistic. So, here's a 5-step "guide" to different things that help me stay positive.
1. Surround yourself with supportive people.
When you're constantly surrounded by negative people who don't attempt to understand your situation, it will be hard to stay happy. I'm lucky, a good majority of my
friends, family, and band/choir directors do their best to understand my situation, and do all that they can to help me. I know that's not the case with many people living with invisible illness. But do everythign you can to help yourself and be your own advocate. Join support groups, make connections with other people with your condition on twitter, facebook, or instagram. I have met a few people through twitter that are now like a family to me. They all have RSD/CRPS or Fibromyalgia, occasionally, I chat with someone who has other types of invisible illness. It's great to be able to talk about various things together via twitter.
2. Find an activity that won't waste too many spoons, but keeps you happy.
I am not the best at this one. I have a HUGE passion for music, and it hurts me tmore than helps me most days. Percussion uses way too many of my typical daily amount of "spoons". Especially when I've been at school all day. Choir doesn't actualyl take too many spoons. I still need a lot of energy for it, but the feelign I get from performing can help almost "replenish" the spoons I lose. Not everyone has access to these kinds of activities, though. I know that. If you like music, see if you can take up an instrument. Start a music blog, and review all different styles of music. Maybe you could try painting or drawing. Anything you find that makes you feel better, or more accomplished, could probably help you "replenish" spoons. I've found that works for me.
3. Find someone you can confide everything in.
Everyone needs someone to talk to. I have one of the best peopel in the world to talk to. He's in choir with me - which is already like my family - and he's a spoonie. We've only been talking on a regular basis for a couple months, but I know I can trust him with anything. He actually understands what I am feeling unlike a lot of my friends. He knows what it's like trying to maintain a good relationship with Christ through this battle. He understands the true comlexity of life, and the extra tension placed on someone with chronic illness' shoulders. He's been a great help these past few months, and I know we'll be friends for a long time.
4. Learn to laugh about your disease.
This took me forever to learn. For the longest time ever, I couldn't find any humor in anything. Everything about my pain offended me. I couldn't figure out why I looked online and saw people making fun of themselves or something about it. Then I realized it was a coping mechanism. And it's helped so much. Now, I call myself a human barometer. I can tell when rain is coming DAYS before it arrives. Sometimes before the weather station reports it. Sometimes, our memory is so bad we could plan our own surprise party. My favorites are from chronic illness cat tumblr. There are some pretty humorous things on that site. The best part is, normal or "healthy" people don't understand what the heck we're talking about. It's kind of like a giant inside joke. :]
5. Have faith and be hopeful.
This is the hardest part, I think. Most days you won't want to have faith or hope. You'll want to sink down with no return. Your mind will tell you you'll never be okay again. You'll want to stop fighting, some may even want to stop living. But you have to keep fighting. Any day could be the day that brings a new treatment. Any day could bring a cure. Any day could be the day you go into remission. When you have this illness that never goes away, sometimes all you're left with is your faith and hope. You're stripped of feeling healthy and happy. You have to remind yourself that, even though your life is hard right now, you just have to keep on keeping on. Have faith. Have hope.
I know it's hard. I'm in the same battle as all of you. But together, we can do this. Together we fight, hope, p