Twisted Plans

“If the plan doesn’t work, change the plan but never the goal.” -Unknown

Yesterday I made the journey back to school after a lovely Spring Break. Normally my dad drives me since I can’t, but my uncle just got a job out here so he was headed this way anyways and let me tag along. It’s a 2 hour drive from my house so we had lots of time to chat. Without going into too much detail, my uncle has had some health challenges this past year that really scrambled up his plans for life. He was told that he may never be able to work again after the things that happened, but today he started his new job, proving everyone wrong.

Watching people overcome their challenges is so encouraging. This past year threw a curveball at my uncle but he is up and ready to tackle life again. We share a similar story in this way since neither of us knew that we’d face such crazy health issues, although they are completely different from one another. We  both have had to make many twists and turns, erasing our original plans and going with the flow. The straight and narrow path that was once envisioned has been muddied up with life’s changes and we’re learning how to readjust.

Part of having chronic pain, or any illness, really, is learning how to be flexible. The perfect day we planned might not be so glamorous when we wake up in too much pain or too sick to complete the daily agenda. The ideal job might fall from our hands when we are suddenly unable to meet the demands it requires of us. School might have to be delayed, vacations postponed, or appointments rescheduled. Life just isn’t straight and clear when you have an illness.

Even though I am definitely one who likes to plan everything out, the twisted plans of life can sometimes open the door to new opportunities and chances to do things we wouldn’t have otherwise done. It’s hard for other people to understand our changing plans at times, but we have to do what is best for ourselves and our health. I have had people questioning some of my decisions, such as staying out of school for a bit or switching to a new college, but ultimately I have to do what I believe will be best.

If your initial plans get a little fuzzy or twisted, don’t lose heart. One way or another, you’ll be able to reach those goals if you keep pressing on and don’t give up. So what if it takes longer? So what if you have to go the non-conventional route? Do what you have to do, and never lose sight of your dreams.

 

Spring Break

I’ve been on Spring break for the past 10 days, and it has been amazing. I really feel like I’ve been home for a month because I packed so much in! This break made me realize how much more relaxed I feel at home compared to school. I don’t have to worry about where my next meal will come from, how I’ll get something that I need from the store, or loud people in the hallway as I’m trying to sleep. It’s pretty great.

In the past 10 days I went grocery shopping, had an advising appointment at my new-old school, babysat, shadowed an OT at my mom’s school, helped in my mom’s 2nd grade classroom, and had tech week for The Music Man, the show my mom was directing. The shows were this weekend and they were fantastic! I learned a lot while shadowing the OT and it really confirmed that that’s what I want to do.

With a busy, 6:30am-9pm schedule, I haven’t had a ton of down time lately. It’s been really great, though, because that means I’ve had less time to think and stress about life. When I’m at school I have too much free time and that’s when the crazy streams of thoughts happen. I think I’m realizing that having a busy schedule works for me. Sure, I do like down time here and there, but too much of it makes me feel sad and unproductive.

Now I am super exhausted from all the fun, but it was well worth it! I have to make the 2 hour drive back to school tomorrow (well, I’m not going to be the driver…I wish!) which I am sort of dreading. I’m not ready to leave the familiarity of home but I know that I need to finish the semester on a good note…and I’ll be home for good in less than 2 months!

That’s a quick life update. Busy but good. I’ll make a more meaningful post later, but for now…I’m off to try to catch some zzz’s! Hope all is well for everyone out there 🙂

 

How to Be a Friend to Someone with Chronic Pain

It has been said that you learn who your true friends are when you’re at your darkest moments. It is during those times that people who are just “sometimes friends” scatter away, leaving you at rock-bottom with those who are willing to stand by you until you regain your footing. Friends who walk alongside us through the flames are priceless gems, rare and simply irreplaceable.

If you are someone who has chronic pain, the valleys of life seem to be more numerous than the mountain tops, making it even harder to retain solid friendships. I have seen this in my own life as friendships have blossomed and wilted, changing with seasons. But, as I’ve said before, friendships and support from others are absolutely crucial.

Sometimes I think it’s hard for people without pain to really understand us or know how to be a good friend. I’m sure it’s confusing and frustrating at times when we have to cancel plans or if we talk about having a particularly bad pain day. So, to shed a little insight to you non-pain pals out there…here ya go.

How to Be a Friend to Someone with Chronic Pain

• Just listen. Sometimes that’s all we need. It’s all anyone needs in many situations. Be a listening ear to hear about the ups and downs of life, not judging or trying to fix everything. Just listen.
• Be understanding. If you don’t have chronic pain and you have never had to cancel plans because of a flare, be grateful. It can be really hard when this happens and you feel like you’re letting everyone down. Understand that life happens and things can change, and offer grace when a rain check is requested.
• Check in on us. I know for myself, I don’t like to reach out to others out of fear that I’m being a burden. Receiving random texts or e-mails from friends reminds me that I’m not alone in this journey.
• Don’t try to fix it all. It can become bothersome when someone is always trying to fix everything. Searching for new treatments, offering advice on how they manage their aches and pains…that doesn’t help. Be a friend, not a doctor.
• Keep it positive. Try to be loving and encouraging, while also being real. Focus on the good things and maybe let some negativity go. And hold us accountable to that as well; talking about all the bad parts of life instead of the good doesn’t help anything. Of course, that doesn’t mean you should avoid talking about the hard stuff…just don’t let it always be the main topic.
• Focus on the person, not thepain. There is more to a person than their pain, or their disease, or their scars. Focus on the heart of a person, not just their problems. It’s easier to relate and enjoy time with friends when the focus is away from the obvious, or maybe not-so-obvious, pain.
• Just be a friend. Chronic pain may interfere with some things, but it shouldn’t change the fact that you are friends with someone. Don’t try to be a mother, a doctor, or a therapist…what we need most is a friend. So be that. Someone to do life with–going places, having fun, and making memories. Just be a friend.

Obviously that’s not a comprehensive list, and the bullet points could always change depending on the person. But, for the most part, I think a little grace and a whole lot of laughter can go a long way 🙂

Be a friend to someone today.

Side Effects of CRPS

Yesterday I was finally able to do my show-and-tell for Kinesiology, so I can now cross that off the to-do list! Hooray! I awkwardly went to the front of the classroom, holding a mug because that was the only thing I could think of to bring. I love tea and coffee, and the mug has a quote about baking, which is another love of mine. Perfect. I talked about those things for a minute and then people were allowed to ask questions. There was some silence so my Professor stepped in.

“Since this is a class about disabilities, and you have a disability (although that is just one small part of who you are, of course), could you please tell us about that and how your life has changed because of it?”he asked. I had sort of expected this, since my crutches/leg are obvious and I have had some conversations with my Professor about RSD/CRPS in the past few weeks. I gave my usual five second speech about what this pain disorder is, blank stares on everyone’s faces. Nobody had heard of it before and I’m sure that in my nervousness I didn’t do a great job of explaining.

But then my Professor wanted to know more. He wanted to know some ways in which having CRPS has caused my life to be different. I thought about it for a second but still didn’t give a great reply. I said something about having to adapt and become humble, asking for help more often. As I left the class later that night I thought about the question some more, knowing that there are more ways than just the few I listed.

So, here’s a list of some of my “Side Effects” of having CRPS:

• Creativity –> I’ve had to come up with numerous creative ways of getting around challenges, such as figuring out how to carry things while on crutches or learning how to put pants on while standing on one leg.
• Empathy –> Instead of simply seeing people with pain and thinking, “oh, sucks to be them,” I can now relate to them and somewhat understand what they are going through. {As a side note, I will never know exactly how someone else feels, because, after all…I’m not them! But I can try to understand their situation when I’m in a similar one}
• Friendships –> I have met so many amazing people along this journey. From hospital buddies to Ronald McDonald House families to people who also have CRPS, it’s been great to get to know wonderful people.
• Talking to Strangers –> Okay, this might not always be good (ya know, “stranger danger!”), but for the most part, it has been interesting to talk to random people who ask about what happened. True, sometimes it’s annoying or too invasive, but I’ve been able to have some great conversations while out shopping or sitting in a class.
• Spreading Awareness –> When I talk to people, I usually encourage them to look up RSD/CRPS so they can become informed about it. This has been especially good here at school since I have a lot of people going into the medical field in my classes, so I hope that some of them can take my story and learn for future patients. I’ve educated clueless doctors, family members, friends…and hopefully they’ll tell others, spreading more awareness about this horrific disorder.
• Experience –> Well, I can only help that this journey will make me a better Occupational Therapist one day. I’ve had plenty of experience as a patient so I am hoping that this enhances my abilities on the other side of things.
• Dependence on Others –> While I don’t particularly like this aspect, having RSD/CRPS has caused me to humble myself and ask for help. I’ve learned that I can’t live in isolation because people are very important, especially when you can’t do everything on your own.
• Strength –> They say that what doesn’t kill you makes you stronger. And while sometimes it makes you wish it would kill you, the strength that blossoms out of struggle is beautiful.
• Respect for my Body –> There was a time in my life when I hated everything about my body. I didn’t want to look at it and just wanted to hide from the world. Now I can truly appreciate the functions of my body when things are working properly, because I sure do miss them when they’re gone.

Well, I know there are a million other lessons learned and “side effects” of my RSD/CRPS, but I’ll leave it at that for now. I have lots of studying to get done before Spring Break finally starts on Thursday, so I’d better get on that!

Thanks for stopping by 🙂

Just Ask

“You have not because you ask not.”

A lesson I’ve been learning a lot in this season of life.

Have you ever wanted something, but you were too scared to ask for it…so you never got it? Maybe a birthday present that you secretly hoped someone would get you, but you never said anything. Or perhaps a changed grade when you knew you had the right answer. Even just the idea of asking for help can be difficult, but costly if you try to do it alone.

The thing is, people don’t always know your needs and wants. They can’t just see into your brain and figure out exactly what you’re too scared to say. It’s up to you to be an advocate for yourself and just ask.

“If you don’t ask, the answer is always no.”-Nora Roberts

Lately I’ve had to ask for help on many occasions. Rides to volunteer activities, help with my homework, and even asking for someone to carry a dish in the dining hall when my hands are too full. Just this morning, I had to have a conversation with my Professor. I asked him if I could take an exam on Thursday, even though it is scheduled for Friday. I have an appointment on Friday and would rather go home the day before, so I gave it a shot. Normally I’m pretty passive and do things according to plan, but today I gathered up my courage and asked. I figured the worst that would happen is that he’d say no, but guess what? He said yes! After all my worrying, the problem was solved by the simple action of asking.

Don’t be afraid to go after what you want. Be even more fearless when asking for what you need. People are usually willing to work with you and meet your needs, but they need to know what those are first. Take a chance, go out on a limb, and be bold. Ask, and you shall receive. What’s the worst that can happen?

The Glamour of College

When I was younger, I imagined college to be this fun place where really smart people were. Now that I’m here, I realize it’s pretty much the opposite. Sure, there are smart people…but there are also really immature students who should have definitely stayed in high school. There’s also some fun…if you find it. Let me bring you into my world for a minute…

I’m currently laying on my bed, textbooks sprawled all around me. I’ve been awake since 8 but studying since 10:30, while also fixing computer problems and creating a new study playlist on my phone. My stomach is rumbling since the only edible thing left in my dorm is old corn pasta that has been sitting, half gone, in a box for the past 2 years…which needs to be rationed out for the next 6 days. I boiled water in my hot pot in order to make said pasta, which ended up slimy on the outside with a crunchy interior. College dining at its best. I would go to the dining hall, but the only one that is open is a far walk from my dorm, and besides, it would be too crowded to find a seat. I’m still wearing my pajamas because I know I’m not going out today, and why dirty more clothes? That just creates more laundry. My to-do list consists of studying for 5 different exams, all happening this week, as well as writing papers and preparing for quizzes. I hear the sounds of loud people in the hallways, all doing something that is probably more enjoyable than this. My room feels stale and smells like feet due to the lack of ventilation. I would go out and do something, but I don’t have a car…so I’ll sit here and attempt to check things off the list of obligations until one of my family members finds a moment to talk to me and ease the struggle.

Welcome to College.

Nope, not what I expected at all. I imagined fun afternoons spent with friends, trips to Starbucks, never going hungry because I could drive to the grocery store, and being on top of my studies. I imagined being part of the community of loud people in the hallway, laughing and swapping stories together. This is not how I imagined it to be.

Now, if you’ll excuse me, I need to go scavenge through the trash to find something to eat…just kidding, I’m not that desperate. But ask me in a few days and I just might be.

Less than 70 days until Summer! Counting down the seconds 🙂

Community

Photo Credit: G Bowater/Corbis

This morning I was sitting in anatomy class, waiting to begin. My sweet (favorite) Professor started talking about his office in his home, and how he had a wood-burning stove in the corner. He told us that as the fire dwindles, there is often be just a small glow on the wood, but as he moves the glowing wood together, the pieces share heat and the warmth returns.

What was the point of this story? Our Prof related this to our interactions with one another. He said that community is better than isolation because you can build off of each other and share life together. His analogy really hit home for me this morning because I’ve been going through a period of isolation lately. Not complete isolation, but I haven’t been giving much of an effort to really dive into relationships with other people.

I think that part of the reason why I isolate myself is that I’m afraid of getting hurt or being abandoned. I don’t like it when things end and I often fear the termination of a friendship before I even get to know someone. To be completely honest, sometimes I run away from others so they don’t run from me first. It’s even harder to make friends when I know that my time at this school is slipping away and I will soon return home, so I don’t feel that it is worth it to start new friendships.

Part of life is community and being with others. It is a sad, hard life when you are completely shut off from the world, as I know from experience. Support and time with people are crucial to a healthy life. Having people to talk to, experience new things with, and do life with in general allows you to learn and grow in ways you wouldn’t have been able to otherwise. Especially when living with chronic illness, support is key.

Sometimes I psych myself out and say that people don’t want to be around me because I’m not like them. I can’t walk or run or do many of the activities they enjoy, so I feel more like a burden than a friend. I’m working on smashing those beliefs with the knowledge that there are kind people in the world who just might be willing to become my friend…I just have to let them in.

Without more wood, a fire dies out quickly. Likewise, without friends, life seems less vibrant and enjoyable. This week I’m challenging myself to reach out to someone who I haven’t talked to in a while so I can break down the barriers of seclusion and isolation, opening myself to new possibilities. We’ll see what happens!

Peace.

{In}Visible

I saw this picture floating around Pinterest today (Apologies for a lack of credit to the photographer…I was unable to obtain that information) and it made me stop and think. I’m sure there can be different interpretations of it, and I’m not certain of the original intent. Artsy? Meaningful? Deep? To me, it’s all of the above. To me, this picture represents the invisibility that I, and many others, am all to familiar with. In the photo you can see the reflection, but not the actual person behind it. It’s like that in life sometimes…we can see ourselves, and of course we know that we exist, but to others, we become almost invisible.

In one of my classes, we each get a turn at doing a “show and tell.” We bring in a little piece of ourselves and stand at the front of the room, open to questions, so the class can get to know us better. I know, it sounds like Kindergarten, right?! I really do enjoy learning about the individuals in my class who I would not have otherwise interacted with. Well, it just so happened that last night was my turn. I tried to think of something clever to bring and prepared what I might say. I wasn’t entirely excited about it, but I was ready for it to be over so I could cross “show and tell” off my mental list of things to do for the semester.

But then, the class came and went and guess what happened? I didn’t get my chance at show and tell.  I was forgotten, invisible. The other girl who was scheduled to go did her presentation, but my Professor completely skipped over mine.

Now, the issue here isn’t show and tell, because in all honesty, I didn’t care much about telling these people about my life. I figured that if they wanted to talk to me, they’d find time so I didn’t want to awkwardly stand there making a presentation about myself. The issue is the idea of invisibility. Of being passed over. This is a regular occurrence in my life-people don’t see me walking behind them and slam the door in my face, my answers aren’t heard, I say hello without receiving a reply. Some days I wonder if anyone has even noticed my presence, or if they even care.

I wonder how many other people out there feel invisible. I’m positive that I am not the only one who has believed she could be the President of the Invisibility Club, so I know there are people out there. People questioning the reason for their existence, or wondering if what they have to say even matters. My heart goes out to these people, because I know the familiar pang of being forgotten all too well.

For those who feel alone, invisible, rejected…you’re not alone. There are people out there who do see you, who do care. Just go outside and look in a puddle, gaze in a mirror, hold a piece of paper in your hand and you will realize that you are visible, and you are worthy. Even if nobody speaks a word to you, there’s someone out there who cares.

Take time to notice someone’s presence today. Say hello, open the door for them, share a smile. You never know who will need it most.

Control

I don’t know about anyone else out there, but I definitely like to be in control. Of my life, my body, my circumstances. If I don’t have a say in something then I feel anxious and unsettled. I like to plan everything and know ahead of time what to expect so that I’m not caught off guard.

When I was younger I had a plan of how I wanted life to turn out. I had huge dreams of being successful and changing the world for the better. I wanted to be sporty, funny, and living happily on the beach. I figured I would get my license at age 16, get straight A’s in school, and attend school dances with my best friends. I was told that I had the power to choose how my life would be, so I dreamed big and created a strategy for how it would all fall into place.

The thing I forgot to add into my plan was the fact that life changes and many things are out of my control. I never planned to have some strange pain problem, I certainly didn’t plan to battle eating disorders and depression. I didn’t plan to spend 4 months across the country, away from my family, at the age of 15, nor did I plan to spend double that in another location when I was 16, again away from the comforts of home. I didn’t plan for my friends to move away or for my loved ones to die. But still, without being on my imagined life story timeline, all those things happened.

Over time I’ve learned that I need to loosen my grip on things. I’ve discovered that I can’t plan when I’m going to have a flare, or when I’ll fall, or when my body is sick. The day I first heard the words “Reflex Sympathetic Dystrophy,” I had to give up control because I didn’t know what to do. When recovering from eating disorders, I had to give up control of pretty much everything. Since I can’t currently drive, I have to give up control of the wheel every time I want to go somewhere. And I certainly can’t control the people around me and what they choose to say or do.

As I try to make a tentative plan for the next few years of my life, I am once again reminded of how quickly things can change. Last year my plan looked so much different-heck, even last month I wasn’t sure what the future might look like. I thought I would be staying here at school, finishing my degree, and maybe somehow squeezing “relearning how to walk” into the mix of events. Now that priorities are changing, the walking goal is moving toward the front of the line and school is up in the air. I know that I won’t be at this institution next year, and I have an idea of where I want to be and what I want to do at this time next year, but I am well aware that things can always turn out differently than expected.

So, for now, I’m making a penciled-in schedule for the coming months but holding my hands open and letting go of control. It’s so freeing to give up that rigidness and see what happens. Because really, even the best laid plans fail, so sometimes we just have to go with what life throws at us, taking it one step at a time.

Suffering is Optional

“Pain is inevitable…suffering is optional.” I’m sure everyone has heard this phrase before, and I’m also sure that most people have come to realize the truth in it, especially in the first half…pain is inevitable, in one form or another.

But we have a choice. We can choose to give into the pain and let it control us, or we can fight back and show it who’s boss.

While I do live with 24/7, unrelenting pain, I try not to let it steal my focus. The idea of staying in bed all day does tempt me at times, but in the end I have to realize that there is more to life than pain and, as I keep saying, I can’t do everything, but there are still a lot of things that I can do.

So, here are some of my favorite ways to kick pain’s butt and continue with my life:

• Attending school and placing my energy on studying and being alert in class, not on the fire that is raging inside (can be tough at times).
• Losing myself in the depths of a really great book.
• Writing. Here, in my journal, elsewhere…just getting my words on paper helps.
• Pursuing a degree in OT, even though I haven’t the slightest idea what my future may hold and if that will be an attainable goal.
• Getting up and out of bed every morning, even when I’d rather snooze.
• Exercising! This is a new thing that I’ve started to do again. It feels great to do my core strengthening program again and I think it’ll help out with my balance. I was supposed to continue this after leaving Cleveland in August, and I have on and off, but now I’m trying to do it more regularly.
• Traveling. I love seeing the world and all that it has to offer. Though it can be a challenge sometimes with different terrains and things like that, I love doing what I can.
• Helping people when they need me and when I am able. I love to babysit, talk to people, and just do what I can to improve the lives of others.
• Not. Giving. Up. Hope. This is so crucial. Sometimes I do waver as to whether I’ll ever get better, but I hold hope that I will, or even if I don’t, I have hope that I’ll still be able to continue leading a full life, despite the obstacles.

Well, those are just a few ways I keep my mind on things other than that 4-letter pain word. That’s not to say that I never struggle, never have pity parties…because sometimes life gets overwhelming and I forget about the good. But for the most part I try to keep the “suffering” down by doing things that fill me up and remind me that I am still capable of being a functioning part of the world.

Stay strong, my friends. And remember that we all have a choice of where we’ll place our thoughts, time, and energy. Choose life, choose joy, choose happiness. But don’t be afraid to feel those less desirable emotions and process through them when necessary…just don’t dwell on the negatives forever 🙂

Peace.