A comment on burnout

We are so sorry for how sporadic our blogs have been. It is a real goal of ours to get better this summer when it comes to our blog and our shop. Right now I have something that I specifically want to touch on, which is usually how I get inspired for a blog, I’ll see something that I really want to talk about on this platform that I am trying to create.

Recently, Charisma from Roll with Cole and Charisma, another interabled couple, has been sharing posts on instagram called “Caregiver Mondays” and a recent one was about caregiver burnout. Her post resonated with me immensely. She talks about the specific things she notices in herself when she is beginning to feel burnout and it made me look at myself and think about the “symptoms” I feel when I am beginning to head towards burning out. She talks about how she takes time for herself when she is feeling burnout. “I realized that if I didn’t take care of myself, I couldn’t be the best version of myself for Cole(her husband)and for others” this hit me like a ton of bricks. I strive to give Charlie my all when it comes to taking care of him and helping him to live the life he deserves, but I need to make sure that I am taking care of myself too. If I am burnout, that’s not the best version of me, and Charlie deserves the best version of me.

I have yet to figure out to combat the feelings of being burnt out within myself yet but it is definitely something that I am working on.

Something that is an important thing to me is when I am feeling burnt out is that I do not make Charlie feel like he is the cause, because he is not. I do not want him feeling like he is a burden simply because I feel burnt out.

Here is Charisma post that I referenced (https://www.instagram.com/p/CewL7uQpxvc/?igshid=YmMyMTA2M2Y=)

Spasms on vacation

Spastic Cerebral Palsy is the most common type of Cerebral Palsy. I have mild spastic CP where my left side is weaker then my right side of my body. I’ve always had stiff muscles and stretches have always helped, but it wasn’t until a few years ago that spasms started to effect me on a daily basis.

I remember the first time they happened vividly. Margaret and I were on our first vacation together in Boston in September of 2019. It was early in the morning and out of nowhere my legs just started flying up uncontrollably. Margaret woke up with me and went down to her car to get a heating pad and Advil to see if it would help because the pain was excruciating. She made a pit stop to grab food from the buffet but ended up dropping the entire bowl of cereal in the elevator, while the maid was in the elevator with her. I will never let her forget it. Anyways, after a few minutes the heating pad and an Advil worked and my spasms went away.

Following that vacation, spasms became a daily thing when my body is falling asleep, waking up, (especially during the winter and stormy weather). How do we deal with them you must be asking. Well honestly they are apart of our nightly routine now. Margaret does an amazing job keeping pressure on my legs often moving with me throughout the night so I can stay comfortable.

Margaret is not an angel, saint, or whatever else you want to call her for getting me through my spasms. It’s something that has become second nature to her and she wakes up with me each and every night to simply remind me she’s right here and that it’s only a few minutes of pain each time and it is not going to last past those few minutes. To be honest, not many people would be built for that, but Margaret has always been.

Let’s put this myth to rest

There is a myth that surrounds interabled relationships, and it revolves around care. Some people might believe that the care in an interabled relationship is one way, meaning that the able-bodied person is the sole person giving care. From the outside it looks that way, and sometimes it can actually be like that. Yes I do take more physical care of Charlie but he takes care of me too.

There is this notion that just because someone is disabled, that they cannot take care of someone and this is far from the truth. If I don’t feel good, Charlie instantly knows what to do. He is the most supportive and caring person in the world.

Taking care of someone in a mental way can be even more important that taking care of someone physically. I would argue that it is more difficult. Maybe that’s just me haha. So I think Charlie has the harder job between the two of us.

There has been so much going on in both of our lives the last two years, it has been a mental roller coaster for me and if it was not for Charlie, I would have been lost. He takes such good care of me.

Recently I saw a post in Instagram of an interabled relationship. The first picture was of the couple with stereotypes of what people think about interabled relationships. The second picture changed the caption to “interdependent.” This post resonated with me. There have been times when I’ve been looked at like I am a saint for being with Charlie and I don’t know what to say. Charlie is just someone I fell in love with who happens to be disabled. People need to start looking past the physical care aspect of interabled relationships. Just because someone needs physical care, does not mean that they are not capable of caring for their partner.

Here is the link to the Instagram post. She posts a lot of great stuff so please check out her page, https://www.instagram.com/p/CVKbQc4sbrr/?utm_medium=copy_link

Abilities Expo 2021

This past weekend we attended the Abilities Expo in Edison, New Jersey. It was an incredible experience. It was hands down the most inclusive place that either of us have ever been and we met some of the kindest people. One of my favorite parts was seeing older interabled couples because it gave Charlie and myself a glimpse into our future.

We met this woman name Kristy Lacroix. She is a travel agent that specialized in booking accessible vacations, this is inspired by traveling with her husband who has MS. The presentation she gave was very informative. She spoke about all the different places that are in fact accessible such as Alaska, South Africa, most of the Caribbean, Ireland, as well as cruising through Royal Caribbean and Disney. She even had a copy of the sign that she puts on her husband’s wheelchair for airplane travel. Her website is http://www.wheelchairescapes.com

[not our photo]

The convention was an awesome experience for us as an interabled couple. I can say with confidence that this was one of the few times that we walked into a place and didn’t get looked at for having a wheelchair with us, and people did not assume I was Charlie’s aid, or his sister(one time I was asked if I was his mom, meanwhile Charlie is two years older than me).

Several different wheelchair manufacturers had booths and had products to try, some were even doing repairs. Seeing as Charlie does not often use his power chair and his manual chair is in good condition, we did not stop at any of those booths. There were several car companies that had vendors there as well, we did not check them out because we are not in the position to buy a new car just yet.

There was a dance company that did a few numbers that included able bodied dancers and wheelchair dancers. As someone who has danced her whole life and is limited in her dance abilities because of scoliosis sand being fused throughout almost her entire spine, it was incredible to see dancers of all abilities performing together. The name of the company is Dancing Wheels Company. They are located in Cleveland, and they perform all over, so if you ever get a chance, definitely check them out. I have a few clips that I’m including for you all.

[this video is owned by justinterabledthings]
[this video is owned by justinterabledthings]

This tap company, named Tap Dancing Hands Down, was definitely interesting to watch. The story of how it came to be hit close to home. The founder of the company was a dancer her whole life, her mom was also a dancer. Her mom had suffered a stroke and was no longer able to dance so the founder took a pair of black gloves and attached the tap parts of a tap shoe to the gloves so that her mom could still tap. I only have one video of them because the story hit too close to home having lost my mother a few months ago after a stroke in the beginning of 2020 and being diagnosed with brain cancer in 2021(if any of you want me to post about that, let me know and I’ll gladly share my mother’s story).

[this video is owned by justinterabledthings]

Overall, the Abilties Expo was an amazing experience, I cannot wait to go back next year and continue to network with other interabled couples and be inspired and inspire others.

New beginnings

Hey all, long time no blog. Life has been keeping us pretty busy. But now we have time to dedicate to our blog. Thank you for being patient with us. Our name has changed but will the content is going to be along the same lines, just more frequent and thought out. We have a lot of exciting stuff coming up that we cannot wait to share with you.

-M and C

An Open Letter to Cerebral Palsy

Dear Cerebral Palsy,

For 26 years you have given me a rollercoaster ride on this journey we call life, from being three months premature, to graduating college to finding the girl of my dreams. Believe or not I think having CP has made me the person I am today. 

I don’t remember when I was diagnosed with CP but it changed my life and effects me everyday, from needing help getting dressed, to showering, each day has its challenges. When you have a disability, always try and have a positive attitude and believe that nothing can stop you. Overtime I’ve become more independent from doing most of my dressing with little assistance to learning how to put on jackets mostly by myself. Another piece of advice I would give is always push for independence and do what you know you can do. 

There are days when I feel like giving up, but I know there are always brighter days ahead. CP may slow me down but it can’t take away my love for life. It wasn’t until college that I opened up and got out of my comfort zone. College was the first time I didn’t have an aide with me so I had to ask people for help. It ended up being the best four years of my life, CP and all. I went to football games, went on trips, anchored countless hours of radio broadcasts for my college’s sports teams. A disability will only stop you if you let them, you are in control. 

Now to my favorite part, talking about my favorite person. As I said before people always asked me: how do you put yourself out there? In college everyone I liked was taken or they just wanted to be friends. I ended up on being on way too many dating apps and was convinced my CP made me undateable. That was until Hinge and coming across a beautiful girl who I knew I would do everything to keep. My CP was never a big deal to Margaret and she recently told me “you are so much more then your diagnosis.” Each day we take on everything together and often forget I have CP. I’m blessed to say at 26 I’ve found what people look for their whole lives. To anyone who feels like their disability has made them undateable, don’t give up, there is someone out there for everyone.

Cerebral Palsy will be with me for the rest of my life, and it is up to me to decide how much I will let it effect me. I am blessed with an amazing support system, who are always there through minor and major things. 

To those reading this, if you take away one thing, let it be this: always continue going forward, never stay in one spot, otherwise your disability wins. Put yourself out there, otherwise your disability wins. Swipe right or match with that guy or girl you think is cute, it could be the best thing that ever happens to you, otherwise your disability wins. Never ever give up even when you feel like you have hit your lowest point, otherwise your disability wins. 

Love, 
Charlie


Something bothered me at dinner.

Recently Charlie and I were out to dinner, like whenever we go out, Charlie was sitting in his wheelchair. We had been sitting there chatting away until the waiter came to take our orders. We were out for Chinese food(which Charlie says is a winter food and I keep questioning why). I ordered my meal and then the waiter says to me “and what is he having?”. This beyond upset me, but I played it off and said “babe, what are you getting?” and I gestured to him. That is when the waiter turned to listen to Charlie order his meal.

The waiter clearly knew that Charlie was capable of speaking for himself as per the fact that we had just been having a conversation before he came to take our orders. This is maybe the second time that Charlie have ran into a situation where people would ask me something about him. The other time we were at book signing from our favorite YouTubers, Shane and Hannah aka Squirmy and Grubs(I’ll insert a picture from that event below). We had gotten there a little late and so we were down an aisle of the bookstore, thus we could not see anything that was happening, but there was nothing to see, we just wanted to hear what they were saying. This lady that was standing in front of us, that probably wasn’t able to much more than we could says to me “does he wanna move over here so he can see?” I tap Charlie on the shoulder and say “its up to you” and he said to the lady “no thanks, we are good.” He handled it much better than I wanted to.

Just because someone is in a wheelchair, does not mean that that they are unable to speak. Yes, that is sometime the case, but the wheelchair also doesn’t mean that they can’t understand what you are saying to them or how you are acting around them.

Back to dinner, I wanted so badly to get up and walk out of the restaurant because of how bothered I was by this man ignoring Charlie and not speaking to him, but I didn’t. I chalked it up to the cultural difference and left it at that.

After dinner we went to the supermarket to get something for dessert, there was a girl helping the cashier bag and she had been giving me the dirtiest look the whole time we were waiting in line. I just kept touching Charlies shoulder and calling him babe so that way she knew that I was his girlfriend and not his caregiver.

I don’t understand why people can’t accept the fact that interabled relationships are a thing. Dating my boyfriend does not make me a good person, it doesn’t make me anything other than his girlfriend. I did not settle, I couldn’t “do better” than him. He is my best friend and the love of my life. I love him with every piece of me. We are saying because we love each other, and everything that comes with being with each other.

If there is one thing that I can’t stress enough, is always be an advocate. Always speak for those who’s voices are so often aren’t heard.