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CP Travel Blog: Midwest to Arizona Addition

My family and I made a two day drive out to Tucson, Arizona at the end of May to visit family and see the desert. One of the most beautiful drives I’ve been on

My Spoonie Tips for Roadtrips: 🥄 🥄🥄

*make frequent stops

*meds

*stretch/walk/move your body

*snacks & drinks aplenty

*naps (if able)

*bring and use your mobility aids 💙

*travel with empathetic and understanding people

Using mobility aids is both something new and something very familiar to me. I have struggled most of my life with using mobility aids when I needed them because of the stigma or ridicule I would receive from others along with my own negative held beliefs (ex-mobility aids make me less attractive or photogenic)

Recently I have started using my cane more when traveling because it makes walking so much easier and with less back pain. Using my mobility aids allowed me to take some outdoorsy engagement photos without looking and feeling physically tapped out 🥰

Due to the heat we spent less time walking this trip compared to others, but I would still consider Tucson to be very disability friendly . Lots of friendly people, shops, and food to experience

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Traveling with CP: NYC Edition

NYC was how I expected and somehow much worse. I loved seeing the city, and it will always hold a special place for me…. I proposed to my girlfriend in Central Park, and met Betty Who after seeing them perform in Hadestown!❤️

BUT…..

It is not a disability friendly city, in my experience. I frequently had my cane kicked out from under me, I was shoulder checked in a crosswalk, and I fell at the Empire State Building because of an inaccessible entry gate! I’m glad to mark NYC off my bucket list, but I doubt I will return.

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One thing they don’t prepare you for in becoming a therapist, is the intense feeling of guilt when you call out sick. My guilt is compounded for me as a disabled person. The last two days I have had to call out sick due to a bad pain flare, which has left me overwhelmed with guilt. Currently I’m just trying to remind myself I only have so many spoons in a day, and that it is okay to rest even if that means disappointing others. 💚💚💚

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Finally! I have reached a point in my journey where I feel comfortable in verbalizing my limits 😁 In the last two days, I has spoken out loud “I don’t have the spoons for this or that.” The amount of pride I feel in myself right now was so intense I just needed to share! 💚💚💚

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Tell me your job broke your spirit today without telling me….The battle for accommodations in my workplace continues to be met with challenges and obstacles….today is a day I don’t have the energy to fight. I feel frustrated beyond measure and it shows with my tears 😭

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Traveling with CP:

Finally I have a few minutes to reflect (and breathe 🤣) sitting outside the Boston airport. This trip is the first trip I have taken where I have flown, and I absolutely loved it! I was incredibly grateful for the wheelchair escort service. As with most things, however, I find that traveling with a disability is stressful and frustrating. Thankfully my amazing girlfriend travelled with me, which helped me immensely. Unfortunately, I found myself still being almost stepped on and walked over while sitting in my wheelchair. Like I said above, I enjoyed my flying experience, and I know I could have struggled a lot more alone. I wish I could think of the words to describe the fear, frustration, and indignity I feel each time I use a wheelchair and no longer exist to some people who don’t appear to see anything other then what’s in their eyesight.

All this to say, I love flying and can’t wait to see what’s next on this new chapter in my life ! 💚💚💚

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The reality of working a 40+ hour work week when you’re disabled or differently abled……squeezing in a short nap on lunch to make through the rest of your day

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Celebrating the little things….

Today someone asked me if I was feeling 100% and I was HONEST saying “nah about 80%.” This may seem like a small thing but I have never honestly told someone (when asked) how I’m actually feeling. I usually lie and just say “I’m good” 💚💚💚

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A disabled body in the able bodied world:

What I struggle with on a daily basis

-the constant fear

-worrying if I’ll be denied accommodations again

-worrying I will always burn out too fast

-having to choose between doing my job or living my life, never both. To enjoy myself (go out, see friends, travel, etc.) would sacrifice spoons i use for work and vice versa.

Sometimes finding balance seems damn near impossible 💔💔💔

I’m sharing in the hopes that I am not alone in this struggle 💚

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💚💚💚

“Stop letting people who do so little for you control so much of your mind and emotions.”

— Will Smith

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💚💚💚

“You don’t have to explain your dreams. They belong to you.”

— Paulo Coelho

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So I’ve been less positive about myself in the last few months so I decided to start a TikTok to help me fall in love myself again, recognize my strength, and spread positivity again 💚🖤🌻

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How many people with disabilities or chronic pain look like this on a bad pain day? Always hiding the pain with a smile so I can go to my job that I love

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When buying a house, moving into said house, and working an emotionally demanding job all occurs in the same week....hello Fibro fog, fatigue, and a pain flair bad enough to make me nauseous 😫😭 Sometimes I don’t have the energy to hide it anymore 💔

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Fuck muscle spasms! I just want to sleep! 😭🤬

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Omg! I feel this so hard as I moved back in with my parents a year ago

I wish more people talked about the guilt disabled children feel for being such a financial burden to their parents, because even with the best parents and great insurance it sucks to know how much money you cost the family

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Say it louder for those in the back! 🙌🏻

hey i know we’re all made to feel guilty for it, but u don’t need to wait for your energy reserves to get to 0% before you allow yourself to take a break and recharge.

i don’t force my phone to hit zero before i plug it in, or else it takes ages for it to even turn back on, and ages longer to get it to a level where I’m comfy taking it out of the house. similarly, pushing yourself to use up the last dregs of energy is gonna slow you down for way longer than you need.

take a break when you can (regardless of whether you ‘deserve’ it!) and do what you need to recharge.