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.

Another Airline Issue

When will disabled people be able to fly without worrying about their wheelchairs? Recently I read a story about a woman who had her wheelchair broken by an airline, specifically United Airlines. A woman, named Engracia Figueroa who was a huge disability advocate, had her wheelchair, which Engracia depended on for her daily life broken … Continue reading “Another Airline Issue”

When will disabled people be able to fly without worrying about their wheelchairs? Recently I read a story about a woman who had her wheelchair broken by an airline, specifically United Airlines. A woman, named Engracia Figueroa who was a huge disability advocate, had her wheelchair, which Engracia depended on for her daily life broken by United Airlines. And yes, I said it twice because these people that have their chairs broken and damaged are people, they are not just some faceless name, they are living breathing people who deserve their property to be treated with respect.

The following is a quote from an article from the Forbes magazine website “In July, Figueroa attended the Care Can’t Wait rally in Washington, DC. After Figueroa traveled back home to Los Angeles, she made an awful discovery — United Airlines workers had accidentally damaged her wheelchair. The $30,000 wheelchair had been loaded into the cargo hold, where it was destroyed. Figueroa had a spinal injury and a leg amputation, and her wheelchair was custom-designed to support her body. Without her wheelchair, Figueroa had difficulty balancing and sitting upright… ‘Engracia was forced to sit in a broken manual wheelchair’ for five hours in the airport, Hand in Hand explains — ‘Her struggle to maintain her balance over that length of time in the faulty device led to the development of a pressure sore. When she was finally able to return home, she experienced acute pain, and was admitted to the hospital shortly after.'”

This is absolutely disgusting. Because United Airlines workers did not know how to handle Engraicas wheelchair, she had to use a loaner chair which was not customized for her needs which lead to a pressure soar that inevitably lead to her untimely death after being admitted to the hospital.

There is an act in place to avoid situations like this called the Airline Carrier Access Act. airlines are required to repair and/or replace lost or damaged assistive devices, this would include wheelchairs; which when it comes to wheelchairs that is easier said than done because a customized wheelchair cannot be repaired or replaced overnight.

What needs to be done is that these workers who are handling these wheelchairs going into the cargo space, need to recognize the importance of these wheelchairs to their users lives. They also need to know how to operate and care for the chairs that they are responsible for.

The simple fact that this is the second blog I am writing about airlines and wheelchairs, is a problem. Myself and Charlie dream of a day where air travel is not this huge scary deal for people who use wheelchairs.

https://www.forbes.com/sites/lakenbrooks/2021/11/08/disability-advocate-engracia-figueroa-died-after-an-airline-damaged-her-wheelchair/?sh=2b30fda110d7