Dealing with life despite disability

Hi everyone,

It’s been a while since I’ve written a blog piece, and tonight I felt inspired to write, so here I am.

Tonight, I’m going to talk more about myself, my life and how I’m dealing with everyone.

When I first started this blog, I wrote about my life with Ehlers-Danlos syndrome. How it was growing up with it and everything that accompanies having a chronic illness.

A lot has changed since then. I’m older, I’ve been diagnosed with more illnesses such as Fibro and Chronic Fatigue Syndrome, just to mention a few. But the illnesses aren’t what I want to talk about this time.

This time, I want to talk about life, how I’ve been handling it, the good and the bad, what I’ve been doing meanwhile, and the hopes and dreams I cherish for the future.

First, I have to say, that for a very, very long time, I think a part of me was just numb; like a part of me didn’t care about anything anymore, because I thought; ‘what’s the point?’ That’s changed now. Even though my health has gotten worse as has my pain, in some way, I feel more alive now than I ever have.

I took me a while to realize that being a young, disabled person unable to work is NOT what defines me. I am what defines me. My actions towards myself and others define me. It’s a bit of a process working that out, and sometimes I still struggle with the concept, but I understand it a lot better than I did several years ago.

This past year has opened my eyes to a lot of things. It has shown me that, just because I cannot work, does not mean I cannot achieve anything. So, I thought about it and what I wanted to achieve, and when it came down to it, I realized I just wanted to touch people’s hearts and become a better person myself in every way I can.

And, there are a LOT of ways to move people. You can move them through art, writing, videos, conversations (about anything and everything). So, that’s where I started.

I created my very own Facebook support group for the chronically ill and disabled, which has grown so much in such a short time, it still amazes me. Even though there have been ups and downs while managing this group, I do know that I’ve connected with and touched people’s hearts, and that they have done the same to me. They helped me realize how strong all of us are, and when we don’t feel so strong, that there is always someone there to help lift you back up.

I think I’ve done some good with this group, and hope to continue to do so and to help and move people the same way they help and move me.

I’ve also decided that, just because I can’t work, does not mean I can’t study. I’m not able to go to a school physically, but I can study official courses on my own, and when the time comes, do the exams for them and hopefully pass.

The first course I chose was Practical Psychology. Not only because it is a subject of interest of mine, but also because I think it will help me understand my friends and members in my group better, so I can talk to them and help them better than I can now, once I’m finished with the course.

The second course is French, which (hopefully) will be part of a series of courses I need to take that will help me obtain my High School diploma. Just because I can’t work, does not mean I can’t have the joy of accomplishing this.

I also spend a lot of time on my various hobbies, all of which really help a lot on the bad days. I’ll do my hobbies on my good days as well, but when I’m having a bad day, they are even more essential aids in lifting my spirits back up. Sometimes you can’t see the light at the end of the tunnel, but it is always there, you just have to reach a little harder to see it at certain times.

I am also trying to be a better wife to my husband. My husband is older and wiser than me, but I was very young when we got married, and honestly, did not understand the concept of marriage as much as I thought I did. There’s a lot to learn when you’re in a marriage. Compromise, communication, working together, for example. I’m starting to better myself in these areas, but I still have some ways to go, but that’s alright, I’ll get there sooner rather than later. Because my husband is amazing, and I really would do anything for him, and want to show him that we are indeed in this together, all the way. I’m taking it step by step, but I think I’ve progressed quite a bit since we said our ‘I Do’s’.

And lastly, I have my hopes and dreams for the future; which are, for the most part, pretty down to earth.

I hope that I will continue to be able to help people, not only in my group, but outside of it as well.

I hope I keep the amazing friends I’ve made these past few years for the rest of my life, and that we will be there for each other always.

I hope that my husband and I will have a long and happy life together, despite our struggles with the medical issues and such, and that even long after we leave this earth, our souls will always be intertwined. Carl’s the Angel I’ve wished for since I was about 6 or 7 (it’s a Buffy, the vampire reference, feel free to ask me about it if you don’t understand) and I couldn’t have gotten a better one.

Lastly, I basically have one dream. I’ve had this dream for a very long time, and it might never come true, but without dreams we’re nowhere really.

The dream is this: I want to write a book someday and publish it, and spread my words across the world. I know that I’ve touched various people with my writing pieces, and that already means much more than I can express, and if that’s all I ever get, that’s ok too. But still, this is a dream and I’ve had it since I was a child. So maybe, one day, it might come true. Either way, I’ll keep dreaming.

That was basically all I wanted to say for now. Thank you for reading, and I hope you’ll join me for my next piece as well.