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.

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.