I will preface this blog by saying, at this moment I’m not depressed for my own reasons and I’m not suicidal. But I struggle with this all the time. I have no real quality of life at this point.￼
I’m not sure how I’ve kept myself from going crazy. I know that being a 100% trapped in a bed is foreign to most people. We have been trying since quarantine to keep moving my legs. At this time, nothing has changed. I am still unable to get into my chair or even into my Hoyer lift. There’s no way I can properly explain the pain from having contractures throughout your legs.￼￼ The moment I sit up in my bed (adjustable bed), which I do every day as high as I can go, my ankles and my feet swell so badly. Even with compression socks and braces on my ankles. I am discouraged. We have been trying. No, I’m not giving up, but I am telling my truth. I am a realist and I’m not someone that sugarcoats anything.
I am so tired. By the end of the day my legs are so numb and tingly that I really feel like I’m going mad. Pain in my hips is excruciating from all the movement we have been doing for my legs. ￼￼I’m struggling because quite frankly, it’s not helping. I need that hard-core 3 to 4 hours of straight up physical therapy at a rehab facility. And that is not going to happen. Insurance companies, namely Independence Blue Cross, ￼and their rent-a-doctors are allowed to run our healthcare now.￼￼￼￼ Again, I’m not being pessimistic I’m being realistic. Some people can’t distinguish between those two things. I am still waiting to get my money back for the transport to my doctors. And for some reason Jason is not returning my emails. Imagine that!￼
Again, I’m not giving up but I’m so tired deep into my soul. Every morning when my alarm goes off for my medications, I wish I could just continue to sleep. Nothing new happens in my life and it hasn’t for years. I’m tired. And it’s not the tired that normies feel.￼￼￼ It’s the tired of chronic illness where every ounce of your strength is being sucked out of you and thrown to the wolves. ￼￼I would love for there to be a, bedridden challenge.￼ Where for one week, hell one day, people cannot get out of their bed for any reason. Not to go to the bathroom, not to brush your teeth, or to wash your face, not for food or anything you do on a daily basis￼￼.￼ Where you have to have someone do everything for you and bring everything to you.￼ I guarantee the majority of people won’t even make it through half of a day.￼
I am broken. I am damaged. Yet I’m still hanging on. ￼I feel defeated, but I’m still fighting.
Something weighing very heavily on my heart is that ￼my favorite Disney princess, my MS twin, my music guru, is fighting for her life right now. She truly is the only person that understands what I go through on a daily basis. My heart is breaking because I know she is so scared right now. She truly is the ultimate fighter. She is the epitome of strength￼￼, my hero. I know in my heart that she will beat this as well.￼ I just hope the cost of all the tragedies she has had to endure in the last year and a half does not break her spirit.￼ Although looking back at everything she’s had to go through, her spirit is strong! If you pray, if you send out blessings, thoughts, whatever it is that you do, ￼￼please send them to her. Just call her, Beautiful Disney Princess. If you happen to read this my twin, just know that I love you so much and if you need me you know how to find me. I’m sending all of my energy your way and to your beautiful family. You see chronic illness doesn’t just affect the person with it, it grabs and holds onto the whole family.￼￼
I know this kind of went all over the place today. That’s where my mind is right now. And for those people that are saying, everyone’s depressed right now with the quarantine and being trapped in their homes etc. Sorry, but no! My life is quarantine. Many of you are heading out and doing whatever you want because you think it’s safe. ￼Quite frankly, it’s not and you’re an idiot if you think it is. The numbers are now going back up thanks to memorial day weekend. And I truly believe because of this, my beautiful Disney princess is fighting the coronavirus. Let that sink in. You may not hurt yourself, or your family, but you are in a roundabout way, hurting others! I hate to sound so harsh, but I kind of hope someone you love gets sick so that you wake the fuck up and realize anyone can get this. ￼Oh man… Before I get angry I’ll stop right here.
Have courage and be kind!￼￼￼￼￼￼￼
PS. Stay the fuck inside, if you go outside wear a mask, social distance, it’s not over yet!￼