Everything Hurts

guide

Cross Country with Chronic Pain

blog, chronic pain, holiday, self help, travelAmanda VinciComment
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Surprising yourself with your ability to do what you thought you couldn't is a great feeling. During the last week of December and first week of January, I surprised myself with that feeling every day. My boyfriend and I loaded up our car and drove cross country from New York City to Cupertino California. We made this 60 hour trip over a period of nine days. The fact that I sat through, and even drove a portion of 60 hours still blows my mind — I usually have increased pain after being in the car only a few hours.

So how did I do it? It's still a little bit of a mystery to me. I certainly prepared myself for the trip both mentally and physically, but I also learned a lot about my tolerance and my ability along the way. Here are my three keys 🔑🔑🔑 for surviving a spoonie road trip.

 
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🔑 I knew from the beginning that planning would be an essential part of getting us across the country. And not just planning which awesome sights to see, but planning hour by hour when was driving time, when was resting time, eating time... etc. I decided that the trip should begin with some of the longest driving days, and that the time spent in the car would gradually get shorter as the days went on. I knew I would have more pain and less tolerance for staying seated the further we got into the trip. 

The Joshua Tree House Airbnb, Joshua Tree CA

The Joshua Tree House Airbnb, Joshua Tree CA

 
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🔑 My greatest fear in life is being out there in the world and not having any of my pain relieving products with me. I'm not lying, that's the stuff of nightmares. If it was up to me, I would have packed a whole extra suitcase filled with everything that brings me comfort and joy, but alas, that is frowned upon by the TSA (I was flying home). So I sat down, had a heart to heart with my products, and picked the ones I knew would be the most helpful. When leaving home, even if it's for a day, it's so important to remember all your medications, even if they're not daily meds. You never know what you might end up needing, and as a former girl scout, I know it's always best to be prepared.

One of my favorite pain relieving lotions, along for the ride. Post about which it is, coming soon!

One of my favorite pain relieving lotions, along for the ride. Post about which it is, coming soon!

 
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🔑 While you may be listening to your killer road trip playlist, one must never forget to stop and listen to their body. Throughout the long car rides I would take time to focus on what it was that I was feeling, what parts were hurting, and how I would describe the pain. I often dismiss my pain as the same terrible pains without actually dedicating my attention to them. All the extra time I had now allowed me to focus on me. On my body. Doing that allowed me to know when I should get out of the car and stretch, or use a certain product, or even go to the bathroom. I find that the most effective way of treating my pain is to listen to my pain. It's saying something, so hear it — even if you may want to reply with "EFFFF YOUUU".

Marveling the monstrous cacti in Saguaro National Park, Tucson AZ

Marveling the monstrous cacti in Saguaro National Park, Tucson AZ

The amazing part of this trip was that it wasn't about my pain. It was about feeling good, and about time spent together, and about discovering what lies ahead. It's easier to forget your daily struggle when you leave part of it behind. Over two weeks of no work and responsibility did my mind and body a lot of good, even if I was pushing my body to the limit. I felt like I was able to free myself from myself. Letting go of my preconceived notions of what it meant to be a sick girl, and who I really am as a person – how I am much more than my illness.

We stayed in some beautiful places (and one not-so beautiful one), ate delicious food (although not always the healthiest choices), I even got a deep tissue massage (though still not as good as my PT's) and had great conversations (even a handful about my pain).

The little car that could — our VW GTI. Its heated seats got me through the back pain.

The little car that could — our VW GTI. Its heated seats got me through the back pain.

At the end, the trip was not only about unbridled adventure but signaled a change in my life. My boyfriend of almost six years would be staying in Cupertino for work until July. I knew the change wouldn't be easy, but it was necessary. I'm extremely proud of him, and also proud of myself — I've never lived alone, and that was mostly because of my chronic pain. These next six months will be new for me, and they may be scary — but I am choosing to use this time to improve my health and learn how to be independent in caring for my pain. 

Giant rocks of Joshua Tree National Park, CA

Giant rocks of Joshua Tree National Park, CA

When I think about the literal road I've traveled, I can't help but smile. This was something I never thought possible of myself, and there I was, doing it all. And I'll do it all again in July, when we pass through the northern states of America to go back home. During the trip we kept talking about how one hour drives will no longer feel like an eternity now that we've done ten hour trips. That also applies to my condition. If I could make it across the entire US, I can surely be alright if the subway is delayed when I'm in extra pain.

"Prada Marfa" permanent art installation — Marfa, Texas

"Prada Marfa" permanent art installation — Marfa, Texas

The trip had given me a new perspective on what I was able to do.
I knew I could now do what I thought I can't.

 

 

Having a Healthy Holiday

quick tips, holidayAmanda Vinci1 Comment
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Thanksgiving is here! And with it, brings food and family, friends and more holidays on the way. Ready or not, the season of celebrating has started. Here are some EH Quick Tips for having a healthy (and happy) holiday.

Stay true with food. Your family's surrounding you and the pressure is on to please. Don't compromise your health by eating or drinking something that could be harmful, just to shut Aunt Ida up. You're vegetarian? Gluten-free? Terrified of yams? Politely excuse yourself from the risky dish and you'll be better for it later.

Be honest about your health. Now, I'm not saying to come to dinner with your conditions printed on a t-shirt, but when someone asks how you're feeling, it doesn't hurt to be honest. Opening up to others about your illness can actually help to relieve some of the stress it causes you. Nobody wants to be the Debbie Downer of the party, but you should never deny your very real pain.

Embrace the celebration. Try your best not to close yourself off to others. It's easy to fall into a rut and avoid conversation, just because you feel unwell and different from everyone else. Open yourself up to a good time, and you'll be surprised just how much you can enjoy something that you may have otherwise dreaded.

Be thankful. And not just on TG, but every day. It's so easy to feel badly for yourself, and about your condition when think about the cards you've been dealt. As we move into the holiday season, remind yourself of the good in your life – the people that support you, the pets that adore you, and even your favorite book. This Thanksgiving, get into the habit of feeling thankful each time you start feeling down.

This year I'm super thankful for everyone who's become a part of Everything Hurts! Thank you all for reading, commenting, and reaching out to me with your personal stories. Have a great holiday, fellow spoonies!

Know to say NO

Amanda VinciComment

I'll admit it, I have a hard time saying no. Do I want to go shopping at 2am on Black Friday? Yes! Do I want to hike a mountain in the Arizona heat? Yes! Do I want another slice of birthday cake? Yes yes yes. Does my body? No. My body does not.

Most of the time, I am pretty content with my decision to go forth and try something. Actually, I'm usually proud of it. "Hell yeah I walked three miles in the 100 degree desert despite my disability. What did you do?" But just because I've said yes to doing something, doesn't mean I shouldn't tell myself 'no more' while doing it. 

My recent lesson in the game of yes & no came in the form of my close friend/creative partner's bachelorette party. When hearing of the night's plan of a pre-party, then dinner, followed by drinks and dancing in the Manhattan's Meatpacking District, I was game. So game that I even wore heels without bringing along flats (what was I thinking?). I was delirious.

I try not to let my condition stop me from enjoying life. I rarely say no to an event, and I really am glad this is how I've chosen to live with my disability. Even if I may not feel as well as everyone else, I show up, and the act of showing up in itself is a major victory for us spoonies.

That night, as I danced to some of my favorite songs, and laughed along with the other ladies, my pain grew stronger and the voice in my head shouting NO grew louder. I needed to take a seat. I needed to take off my heels. I needed to be home... in my bed, watching Netflix. But I was defiant, I kept on going, pretending I wasn't feeling a thing. My determination to 'be normal' was getting dangerous... I finally sat down. I sat right beside the other girls as they danced, towering above me... I danced in my seat, feeling lame. I sat there for what felt like forever (it was 5 minutes) and decided I was in perfectly good health, kicked off my heels and rejoined the party.

This, was a poor decision. The next day was a blur of pain as I moved from the bed to the shower to the couch and back again. There were zero spoons to be had. I heard the voice of reason— "You, are not like everyone else. You, need to chill the f**k out."

I had learned my lesson. One month later, at the same friend's wedding, I now applied a new set of rules to the way in which I would have a good time. I wore heels to the ceremony and in the photos, but ditched them for Rescue Flats as soon as I got to the reception. (The bride was a genius for getting these!) I balanced dancing with sitting, and made sure to take pain relievers before, during and after the event. Was I pain free? Of course not. But I was feeling good and still had a great time.

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Instinctually, I'm a yes girl. You may have the same problem, or you may be the opposite – saying no in order to protect yourself from the pain. There's no wrong way to live your life when you have chronic pain, but there is a way that's right for you.

Do what makes you happy, but also what makes you feel as best as you can. Your body knows you best, so say yes, but then... say no.

Communicating Your Condition

Amanda VinciComment
 
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One of the biggest difficulties that comes with your medical condition is expressing to others what it is your going through. Explaining your pain to non-sufferers is no easy task, and can exhaust you in a matter of minutes. (I know, I know... most things exhaust you in a matter of minutes).
 

 
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First things first, talk about how it feels. Introduce your condition(s) – "I've got [xxxxxx]... it kind of feels like: electric shocks throughout my body, how most people feel after walking 10 miles, like I get hit by a golf cart while sleeping every night...". You can be serious, you can be funny, but always be honest. Adding some sarcasm and imagination to your explanation helps to lighten up the conversation. Get a good read of who you're talking to, and try to put it in terms that they're familiar with.

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When we tell someone about our condition, there's a good chance their reply will be "but you don't look sick." Nothing infuriates someone with an invisible illness quite like being told they look perfectly fine. The pain we feel may not be shown on the outside, but it's there every day, and it's real. It is easy to lose your temper or tear up when you hear someone downplaying your pain based on how you look. Remember to keep your composure – you have a job to do! It's up to us to educate others about our illnesses. Your pain may be invisible, but you are not.

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When I was first diagnosed with fibromyalgia, a common misconception amongst doctors and caretakers was that this pain was entirely mental. I remember being 15 years old, sitting on the exam table as the doctor chatted with my mom as if I wasn't in the room. "She's seeking attention" he said. What 15 year old wants to be in pain every day? Who makes that up?! I yelled back at him. Unfortunately, he wasn't the only one that prescribed to this notion that the pain was just a manifestation of depression and anxiety. Thankfully, the amount of professionals that still think this way are few. No matter your condition, you're bound to encounter someone that will tell you that if you believe you'll feel better, you will be magically healed. This is bullshit. We know this is bullshit. Being in pain can cause you to feel depressed, but you are certainly not feeling pain due to depression. Let it be known: it's not all in my head.

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Being the "sick one" out of your friends and family often leads to feeling left out. It's easy to want to lock yourself away and be alone with your pain, but unsurprisingly, sharing a bit of your day with someone can feel good – even if it is just mentally.  Let your loved ones know that although you may not feel up to doing something, you definitely wish you could. More often than not, your friends will stick by your side and are willing to help in any way they can. Explain your limitations, be open with what you physically can and cannot do. They want to go camping? Uhm, maybe you'll skip that one. How about a night in watching Netflix instead? As time goes on they'll have a pretty good understanding of your condition, and acceptance of who this new you is.

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The most important thing to tell others when talking about your condition is that you're still you. your illness does not define you, but is part of what makes you great. You'll always be the person they know and love, and will now respect in a whole new way.

Go forth and tell your spoonie story with pride.