In receiving my diagnosis, I’ve had to have a few sit downs with myself so that I can fully understand what this disease will do to my body. Some of these things I’m ok with…not really being ok to be out in the heat or cold is something that I’m COMPLETELY ok with. (Give me mild weather and I’m a happy camper…) But there are some things that I’m mourning. I was told that this disease is a chronic illness. It will not go away. I’m going to have to fight it my entire life; it’s difficult to imagine making plans when any little glitch with my body can make those plans fall through. These plans include dating, finishing school, getting my degree, starting my career and following my dream of becoming a nurse, moving out, being able to go to a store by myself to pick something up that I want…I’m really having a tough time dealing with it all.
The thing that I’m really upset about is the fact that I want to become a nurse. This is a dream of mine; to be the person who is the sympathetic ear for patients like me–patients who don’t have a diagnosis but are seriously ill–who are going crazy because their doctors don’t understand. But seeing as how perfume and cleaning chemicals close my throat, I can’t even go to school, let alone become the nurse. I thought about becoming an OR nurse–sterile environment…no scents…but I had forgotten about cauterization and the smoke that results from that. So that has just gone right out the window. I’m settling for something else. I’m planning on getting an online degree in healthcare management; I can at least stay in the health field once I have it, and a lot of managerial careers you can do from home. But that’s the thing–I’m settling. I’m going to have no face to face encounters with patients who need my help; it’s heartbreaking. And not only am I having to give up that dream of becoming that superhero, but I may never be able to work again. It’s a reality. I can’t pay my bills. I’m 27 years old, and can’t afford to pay my bills without some help from my parents. It feels pathetic. It’s a struggle to understand why this syndrome is so simple–yet so complex at the same time.
I’ve had to mourn my independence. I rely on my parents for everything. I can’t go to the grocery store to pick up food. I can’t control the environment and it scares me. I’m genuinely scared. I’m so beyond frustrated with how big of a market perfume and cologne have…simply going to a restaurant is potentially harmful. I’m going to my doctor’s on Wednesday to start testing, and I’m going to be flat out honest and ask for a handicap sticker. I don’t want to be that person, and I won’t use it if I don’t have to–but because I’m SO sensitive to scents and temperature, the less time I’m outside, the better. I cried when I realized that I needed it. I never thought it would get this bad. But, it has. And it’s heart-wrenching. I’m also applying for disability soon. I never imagined that I would be that person who would have to rely on the state for my income–but that’s how bad this disease has become. I was always the ambitious one. I was the one who was going to save the world. And now? I feel like a lump on a log. And I know that my body is so busy doing so many different things, but I can’t help but feel stagnant. It simply sucks.
I simply cannot wait to get this testing done so I can start to mess with my meds. What I’m doing now, simply isn’t working. I need help. There are days where I sit up and simply think, “What’s the point of getting out of bed? You’re just going to be back up here in 2 hours for a nap…might as well stay here.” and then “Why bother showering. I’m not going anywhere. It takes so much energy to shower, and then I’m wiped for the rest of the day. I’ll just stay in my pajamas and not worry about it.” The depression is real. The anxiety is real. And I know that I’m strong–I KNOW I’m a strong person; but the struggle bus is chugging into town. I ordered a ring last night (sorry Mom…the first one turned my finger green, and caused me to itch…) and it has the semi-colon stamped on it. On the inside is a secret message people won’t be able to see and only I’ll know it’s there (plus you now since I’m telling you ☺). It says “Never give up” and it’s something that I need to remind myself. There have been days where I want to just give up. I want to crawl into that hole in the ground. I want to escape from society. I know I can’t. It’s not ok to want to feel this way. There are times where I can’t help it–it’s a part of this wretched disease. And that’s why I’m going to wear this ring for the rest of my life–it’s my symbol to keep going…to keep fighting…to never give up on myself or on God. As soon as it comes, I’ll post a picture of it. I’m really excited to wear it. Keep it close.
I know I kinda jumped around a little, but my brain is scattered tonight (plus I’ve had to take a crap ton of Benadryl so that my hives would go away…) so I apologize. I hope you are all having a fantastic holiday season! I’ll write more soon.
Thank you so much for your kind thoughts, prayers, and well wishes. They mean more than you could possibly know.
As always, all my love,