Delicate

To say I’m not self-conscious about my chronic illness would be like saying I didn’t care what other people thought of me when I was in high school. Neither is true, but high school was a lot easier because at least everyone else felt the exact same way — and I knew it. Despite feeling self-conscious about the shape of my body or being worried about my future, I knew all of my classmates felt the same way I did. That brought a little glimmer of comfort even in all the confusion.

What’s frustrating about POTS now is that I feel so alone in it. I don’t have a close knit group of friends who are chronically ill, and frankly, that sounds exhausting. We would never be able to make plans with each other because one of us would always be feeling sick, and it would be a whole lot more difficult getting from point “A” to point “B” without having someone who could carry two water bottles or still think clearly even if it gets really hot outside. If I had known in college that one day I wouldn’t be able to carry a Smart Water bottle around for myself I would have been terrified for what my life was going to become.

I freaking hate having a chronic illness. I hate how it makes me feel, I hate that it’s so unpredictable, and perhaps most of all, I hate that I ever have to rely on other people to take care of me. I have always been super-independent, and despite being sick for almost five years now I am nowhere close to being used to all of this. Let that sink in. I have been sick for almost 1/5 of my life now, and I am still not even close to being used to it.

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Every morning I wake up and want to be able to do everything for myself. I want to cook, then clean up the mess in one sitting. I want to be able to drive to meet my friends for lunch without worrying about where they want to go geographically because my arms might hurt terribly from driving too far. I want to have enough energy and strength to go to work, think straight with no interruptions from dizziness or brain fog, and get through an entire day without hurting and becoming stiff — then do it all over again five days in a row. I don’t understand why all of these things that feel like very basic human rights have been taken away from me.

I miss my independence so much I want to scream. I push myself to limits that I know are going to hurt me because I don’t feel like asking for help with little tasks. In my mind, people are going to get annoyed if I keep asking for help with so many seemingly easy things, and it’s not worth losing all of my relationships to feel decent. My brain understands that the people who love me are happy to take care of me, but my heart feels heavy and tight with frustration. I often feel like a burden — not because anyone has told me that I’m one, but because I can’t take care of myself the way I used to. I want to be the one to take care of my parents and repay them for taking care of me for more than just the 18 years they expected to. I want to be able to support myself financially, and I want to feel like I can give acts of service to my loved ones more than I am able to. I want my friends to understand the way that I feel and to know what it’s like to lose every sense of normalcy your body has grown accustomed to — but only for a day so that they can know what my every day is like and why I’m often so tired. I want people be able to feel my frustration so they can really understand how much small things impact me in my day-to-day.

I could write a book on all the things I miss that are really normal. I miss being able to make chocolate chip cookies from scratch all by myself, and I miss doing my own laundry (Seriously!). I miss going shopping without eventually feeling nauseous and dizzy. I think what I miss most is going places by myself. Whether it’s being able to drive into the city to walk around and explore by myself, or taking a mini road trip to see a friend, I wish I could drive myself around without having to rely on loved ones to chauffeur me around. I am 27 years old and want nothing more than to be able to sit in traffic by myself to see my best friend just one a state away whenever I want. I either have to wait until someone can drive me, or have her make the hour-and-a-half trip by herself to come and see me. Both the little and big things about being sick bother me, and I honestly don’t know if I’ll ever fully be used to being different this way. I hate asking people for help, and haven’t gotten a lot better at it over the years. POTS has made me realize that it isn’t always a person who can break your heart. There are other things in life that can take a little piece of it away, too.

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Acts Of Service

Acts of service is one of the more difficult Love Languages for me to write about, as it’s the lowest on my list. This is interesting, though, because I speculate that a lot of people who are incredibly close to me have this as one of their top LL’s. Ever since I realized this I’ve tried to be really cognizant about the things other people do for me, as well as amp up my acts of service in their lives, too.

Did you know that sometimes when you speak the wrong love language to someone that they don’t necessarily register it as being something coming from the heart? I learned this when I began to realize that one of my favorite ways to show love — through little gifts and letters — wasn’t necessarily what was making everyone in my life feel loved. After paying closer attention to what others need I have tweaked the way I love, which in turn has changed my heart to receive all 5 love languages a little better. I used to brush off acts of service as things people felt they had to do for me, but now I take note of even the smallest actions people do from their heart.

One act of service Robert thanked me for today was getting up early to take Jax outside and keep him in the living room to let him sleep in. I actually didn’t think Robert would have even really noticed, but it made my heart warm this morning just knowing he would get the rest he’s needed.

Ideas to implement this LL:

  • Run an errand for your loved one.
  • Play chauffeur and drive your loved one somewhere they need to be, but can’t get to on their own. Lots of my friends and family do this for me often, as I can’t drive much longer than 10-15 minutes at a time, so I’m very familiar with this act of service.
  • Do some of the chores your significant other hates so (s)he doesn’t have to. This is difficult because fine motor skills (ie: loading and unloading the dishwasher) can add to the pain in my arms, and so my parents have taken a bigger burden with chores in the house. I’m so thankful and try to help out in other ways, since I’m currently trying to work to get stronger so that I will hopefully be able to serve others with this again one day.
  • Fill up their car with gas. This is such a tiny act of service, but it’s one I’ve grown to really appreciate. I can’t pump gas with my arm pain, but even before I got sick my dad always tried to fill up the girls’ tanks to keep our cars in tip top running shape.
  • Cook them a meal. I know I mentioned cooking in the “gift giving” Love Language, but it can also be categorized as an act of service. This is a great way to show someone you care about them and want to spend time with them. Even sending a packed lunch to work is a really sweet gesture.
  • Don’t complain when someone asks you to do them a favor. I cannot emphasize this enough, as I have had to swallow my pride the past 4 years and learn to ask for help. I already have a really hard time asking for the things I need, but it’s really made it harder when someone tells me how difficult the favor was to do. For the most part everyone has been so incredible about pitching in, though, and I remember so many of the sweet things people have done to help make things a little easier on me. I couldn’t feel more grateful, and I hope to be able to love with some of the acts of service that are hard on me in the future.

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Acts of service can be difficult to spot, and easy to take for granted. People who love this way, though, will show it in everyday life. Whether it’s doing home improvement projects, cooking a meal, or simply doing the laundry, acts of service are often the little pieces of love woven into the little pieces of your day. They are often even combined with other Love Languages, such as physical touch through a massage, or gift giving with a homecooked meal. What kind of acts of service do you notice in your life?

The 5 Love Languages For Dummies

If you’ve followed this blog even just a little bit you’ll know I really value the 5 different love languages. I think they can be a game-changer in any relationship — romantic or otherwise — and if you know how to use them correctly they can make the world a much brighter place. Loving someone in a way that speaks to them will make your heart warm and fuzzy, and helps people you care about feel like they are important to you.

I know that every love language doesn’t come easily to each person. My heart has always been one that feels strongly, and I’ve found as I’ve gotten older that every love language is really important to me. I feel fluent in all five, and I wanted to share some fun little ideas of different ways to love someone using their love language. This week I am going to be focusing on the 5 different love languages. Please feel free to comment other ideas that my readers can use for each love language, and take a minute to discover what your own love language is by taking this quiz.

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The last time I took it my top love language was quality time, followed closely by physical touch. My love language score is really interesting because instead of heavily leaning on one thing, I seem to really enjoy a nice balance of all five love languages. I didn’t have a hard time choosing between the options for the quiz, yet I still had very balanced results.

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This is kind of crazy because my entire life has had “gift giving” towards the top — and it’s still one of my favorite ways to show people I love them — but ever since Robert and I started dating things have shifted a lot. Don’t get me wrong, I still love little presents and surprises and really cherish every little thing he gives to me, but I am kind of floored that other ways to love have taken precedence over that. My favorite thing in the world is spending time with him, and if you can add holding hands and a few of the other love languages into a date with him that’s my little taste of heaven.

My heart feels warm and fuzzy when any of these languages are spoken to me, so I’m stoked to write about each of the different LLs this week. Stay tuned, and I would love to hear about what makes you feel loved in the comments!

Asking For Help

Part of me feels strange when I tell people I have a chronic illness — it doesn’t feel real that I am very different in a big, foreign way — but the other part can’t really remember what it’s like to be normal. It almost seems like the rest of my life was a dream, and it’s mind-blowing that I used to be able to jump out of bed quickly without blacking out or that I could carry my own backpack from class to class. I can remember what it’s like to run, but I can’t recall the feeling of independence that should have gone along with this privilege. Needless to say, I have had to swallow my pride a lot the past four years, and ask people for help.

I remember feeling incredibly uncomfortable when my Master’s class went to the university library and we were told to bring our bags because we wouldn’t be going back to that classroom. I panicked a little on the inside, as my dad always walked me to class early and picked me up late so that I could be discreet about getting help carrying my stuff, but I knew I would be in pain for a week if I didn’t ask someone to take my bag for me.

My face got warm as I approached one of the only guys in the class. “This is going to sound really weird,” I started, “but would you mind carrying my backpack to the library for me?”

I could feel my body turning the bright shade of red it seems to love so much when I am uncomfortable. I tried to think of something else — anything else — that would make my autonomic nervous system cooperate, but I ended up just coming to terms with the fact that I looked like I suddenly got a terribly bad sunburn under the florescent lights.

“Sure, no problem,” he interrupted before I could go into my spiel about why I need help taking a fairly light bag from one part of campus to another. I explained my situation quickly as he picked my bag off the floor, and was relieved when we shifted topics to chatting about English-related topics instead of my personal problems.

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Since that day I’ve gotten [a little] better at asking for help. I still have trouble vocalizing when something hurts unless it’s an unbearable pain, and I try to be as independent as possible, which sometimes results in injuring my muscles and joints further. I try to remember that everyone has something they need help with, even if it’s not the same thing I am struggling with.

Many of my friends have even become so great at automatically helping without me even having to ask; this blog has been an amazing platform for raising awareness for twentysomethings with chronic pain, and I think people understand a lot more than they would without reading about the experiences I have on here. Thank you to each and every one of you for reading and caring about the stories I have to tell. It means the world to me to have support from friends, both in person and for this little space on the internet.

Today’s Lesson: I always joke to my friends to “channel Krista” when they want to avoid a guy making a move on them on a first date since I was kind of a pro at that back in the day. Today, I want to encourage you to pull a Krista and ask for help when you need it, even if you’re afraid to. Whether you have a broken heart and need a friend to talk to or need assistance with a physical task, people are always a lot more willing to pitch in and help out than you initially expect. We all have different things to offer the world and ways we love to serve, and I’ve often found that when people can help another human being it makes them feel good as well.