Tag: love story

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.

Have we mentioned?

For those of you that may not be aware, or those of you who do not follow our personal instagram pages which you totally should (@cmoerler93 and @ivegotthemaggic). We are engaged!!

image description: margaret’s left hand with engagement ring on it out in front of Charlie in his power wheelchair. Charlie is smiling.

We recently went to Disney, there will be another blog about our trip soon, and by recently I mean two months ago. But since then we have been enjoying the engaged life. We have set a date for our wedding and put a deposit down on a venue, which to me made it feel real that we are actually going to be married and spend our lives together. We have also had the opportunity to celebrate our engagement with our families, and apparently the place that we had our engagement dinner at, was the restaurant that my dad proposed to my mom. When he told me this it made everything more special since my mom passed only a few months ago. I had no idea that it was the same place until feet the fact, and it made it feel as though that was her being there.

The day that Charlie proposed, there was a rainstorm, as there is most days in central Florida and of course we continued to walk around in the rain because it felt good in the Orlando heat. As we were walking around in Epcot, there was a rainbow over the lagoon. And normally I would just smile at it and say “cool” but something told me that this was my mom telling me that she knew I was engaged and that she was happy for me.

Image description: margaret’s had stretched out showing off engagement ring. There is a rainbow in the background over the lagoon in the world showcases part of Epcot.

Like I mentioned before, we cannot wait to spend the rest of our lives together. Keep an eye on our blog and social medias for wedding updates and there will be more blogs about our experience with planning our interabled and accessible wedding.

A little surprise for you all!

SURPIRSE!! We have created a shop on Etsy!!

We have several different products with our logo on it as well as other advocacy related products. We have shirts, both short and long sleeved, a crew neck sweatshirt, some stickers and we are going to be creating more so if you have any suggestions for products feel free to send them our way! For the clothing products we have picked a varying range of sizes but if we do not have a size you want, let us know and we will definitely rectify it.

Here is the link to our site: https://www.etsy.com/shop/justinterabledthings?ref=search_shop_redirect

Please share our shop with people who you think would enjoy our products and want to learn more about our story as well as advocacy.

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

Build one another up instead of tearing them down

The disability community over the last few days has been “attacked” by one of their own. This person decided that it was perfectly okay to call another person a disgusting human being because their wheelchair was dirty.

First of all, the cleanliness of one persons wheelchair or room or car, is no one’s business. Second, as a fellow disabled person, you should recognize how difficult it is to take care yourself and have others take care of you. The cleanliness of ones wheelchair does not have any effect on the value of the person. Not everyone is lucky enough to have someone to take the best possible care of them.

As the able bodied person in our relationship, I make sure to give the best care that I can give. I give Charlie nothing less than 100%. Keeping his wheelchair sparkling clean is the least of my concerns but when it is dirty, mostly from crumbs from eating out, I’ll wipe the crumbs off before folding the chair before putting it in the car. But if anyone saw what the Velcro on his AFO’s, they would cringe (I know I do) but they are almost impossible to keep clean. But I do my best. As do others that are taking care of people.

Hello 2020

2020 started off way different than we thought it would. It has been a roller coaster to say the least, but that’s a story for a different day. Something happened that we had been talking about since September. So, since September Charlie and I have been spending every weekend alternating who’s house we were staying at. Well now we no longer have to make that decision. 

Charlie and I are now living together!

As of January 21st, Charlie moved into my house with me and my family, Wow, I can’t believe I just said those words, it has been almost three weeks of us living together and it still doesn’t feel real to either of us. 

Charlie had been spending more and more time at my house, which was easy for him to get into but not so much to get out of, my dad built a ramp, right before Christmas, so he would be able to get in and out of the house more easily. 

There were still other steps that we needed to take to make the house completely accessible, like putting grab bars on the toilet and getting a shower chair for the bathroom, and other “moving in” things that every couple has to do, meaning my room needed to be cleaned, I needed to get rid of some stuff, and make room for Charlies belongings (luckily he’s like most guys and does not have that many clothes haha). 

Within the first week that he moved on, everything was taken care of. We got a few small dressers from IKEA that were for Charlies clothes, we bought the grab bars, and the shower chair. The only thing missing, is a bigger bed, but we are both five feet tall and weight the same, so sharing a twin sized bed, is not the worst thing for us.

If it was not for the love and support from my family, this would not be possible, they opened their home and their hearts to Charlie and they have treated him like he is a part of the family since the very first time that I brought him home to meet them. It feels as if he is the son my dad never had, which is the best feeling, having my parents love him just as much as I do.

Living together has been an amazing experience so far, we are both learning things about each other and ourselves that we never knew. I cannot wait until the day we are able to live together in a place all our own, but my purple childhood bedroom will do for now.

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.

Loving Someone with Cerebral Palsy

So here I am sitting in my bed watching videos on my phone and texting Charlie(what else is new haha). He sent me a link to an article and said “THIS IS YOU.” The article was from the mighty.com and it was titled “What It Means to Love Someone with Cerebral Palsy” which was written by a girl named Ashley Burnside back in February of 2017. “The Mighty” is a website that has created a community of support for people who are facing health challenges as well as the people in their lives. They are partnered with companies such as the American Foundation for Suicide Prevention, National Down Syndrome Society, The Ehlers Danlos Society, National Organization for Rare Disorders, National Alliance for Caregiving and of course the Cerebral Palsy Foundation.

Not going to lie, when I first opened the article I thought it was going to be some sappy article from a mom of a child with Cerebral Palsy and how their child is their little hero. But to my surprise, the article was not that at all. It was a young girl that wrote it like I mentioned before. She started with a childhood memory about knowing at the age of four that according to society, people with disabilities are not likely to get a fairytale ending. She was convinced that her disability would always hold her back.

She says “Loving someone with cerebral palsy does not mean you overlook their limitations. It does not mean you ignore the imperfections that make their body unique and different. Loving someone with a physical disability means you love them with their disability. It means you know every aspect of their disability, and it only makes you want to be that much closer to them.” This paragraph is exactly what I want people who question interabled relationships to understand. 

I love each and every part of Charlie, from helping him get dressed, cutting food, walking behind him on uneven surfaces, to waking up with him during spasms at the wee hours of the morning. His disability is a huge part of his life, it affects him everyday. How could I not love it? It would be like not loving someone because they can’t grow a beard.

I wouldn’t trade the nights that I haven’t slept because of was holding him during spasms for the world. I will always be his voice when people have a hard time understanding what he is saying. I have no problem telling strangers to move out of the way before I run them over with his wheelchair and they don’t hear the first time either of us say “excuse me” or “watch your back.”

Thank you Ashley for this incredibly insightful article. You said all the things that Charlie and I could not find the words to do so. I highly recommend that you all check out the article, here’s the link:

https://themighty.com/2017/02/cerebral-palsy-and-romantic-relationships/

The Importance of Reassurance

Reassurance/encouragement is important in any relationship, but I would go so far as to say that  it is more important in an interabled relationship. I know what to expect with my Cerebral Palsy every single day, despite that fact it doesn’t mean I don’t have bad days along the way. Some days are harder than others whether it be from stiffness or just wishing I could do more on my own; one smile or one kiss from Margaret instantly fixes everything. When Margaret just drops an “I love you” and says “I knew you needed it,” I’m reassured right then and there. 

Margaret is also amazing with encouragement. The first thing that comes to mind is when I put my seatbelt on by myself in her car. Her reaction was totally unexpected and made the moment even more sweeter. Another example is cutting my food on my own(with a little bit of help from Margaret). Like I said in the last blog everything takes trial and error. Margaret always cheers me on and never lets me struggle. Just remember how much your significant other is doing for you each day, a hug or an I love you can go a very long way. 

I never wanted to admit that I was a person that needed reassurance. I still don’t like to admit it, but I am getting better with it. Charlie is partly to thank for that. What I like to say is that I am very secure in our relationship, I don’t need reassurance about Charlies love for me(even though he reminds me every chance he gets), but I need to know that I am doing okay with everything. I need that little, gentle reminder that I am okay and that I am doing the right thing, and I am doing enough. I work full time and I am also going to school for my Masters(not to brag but I have a 4.0), I have a healthy and loving relationship, and I am an overall good person. I still feel that I need to do more, that I need to prove myself. Charlie is always there to remind me that I am doing great and that I do not need to prove myself. 

If there is anything that you take from reading this article let it be this: even if you think your significant other doesn’t need to here some reassuance, give it to them anyway.