Hello there everyone. I've decided that, for the time being, I'll be posting primarily on Tuesdays and Thursdays, unless something comes up and I have to plan accordingly. I haven't figured out a set schedule for posts yet, but there may not be one. That being said, this is only tentative as I'm not sure how my commitment will waver once I finally get a job. If I forgot to mention it, I've been unemployed since early June and I'm working on it. I will also be starting online coursework in January for my new Master's in Library and Information Studies degree, (yes, this is a long way away and no, I'm not crazy, just tethered to the higher educational system, clearly). Again, this may impede my scheduling commitment, but for now, let's see how this goes.
Today, I'm going to talk a little bit more about myself. As some of you already know, I have Systemic Lupus Erythematosis, or Lupus for short. This is an autoimmune disease that affects most of my body, including my internal organs, which has been the bane of my existence for the last 15 years or so. Currently, I'm fighting off kidney disease and possible failure, but it's gotten a lot better since last summer when I was severely close to needing dialysis. I've been on a multitude of medications, including drugs intended for patients going through chemotherapy and steroids to help with everything from swelling joints to an inflamed heart. I've been feeling much better as of late, but I still have a long road to possible recovery, which is still not guaranteed.
Why am I telling you all this? Well, it has everything to do with why I enjoy spending as much time inside as humanly possible. I would trade an afternoon at the beach on a nice day like today for a quiet afternoon in my bedroom reading a book or four. Technically I've been a self-proclaimed introvert for as long as I can remember. I know I wasn't always this way because I used to be spunky and outgoing when I was younger. I have no idea when my personality flipped or when I decided that being quiet and out of the way was easier, but by high school, I was the girl walking head-down through the hallways, trying to get to her next class without getting pushed or stepped on.
It was a different story when I was with my friends. Once you get to know me, I'm a bit of a weirdo. I love making people laugh and many of my friends come to me for advice on the rare occasion that they need any. I tend to keep a close group of about a dozen good friends nowadays because it's a lot easier and they satisfy my need for happiness. I enjoy the time I spend with my friends, when I do spend time with them, which has become a rarity as of late. This isn't because I dislike my friends, but because I hate interacting with people in general. It takes a lot of my willpower to force myself to hang out with my friends and it took me a long time to figure out why this was a problem. I love all my friends and family dearly, but there's something else at work here that I felt like explaining.
It's difficult having an invisible illness like Lupus. You never know if you're going to wake up exhausted or sore or any other combination of things. There are variables you have to consider, like making sure you have sunscreen on before you go outside so your kidneys don't suffer or taking a bottle of Advil with you in your purse, just in case. No amount of coffee could ever correct the chronic fatigue I experience on a daily basis, so it just becomes another mundane routine. Not a lot of people realize that it's difficult to just get out of bed in the morning, let alone leave the house and get things done. I've discussed "Spoon Theory" briefly before I think, but I'll leave the link here for those of you who are interested. Basically, this theory discusses the idea that "Spoonies," or people with chronic illnesses, have a specific number of "spoons" they can use throughout a typical day. Once those "spoons" are gone, so is their motivation and energy. A normal human being has an unlimited amount of "spoons" to use in a day and they don't understand what it's like to make decisions based on how many spoons you have. We need to pick and choose how we use ourselves each day for fear of crashing too early.
This is why I plan out most of my days in advance. I'm also mildly OCD, (Onychophagia), but that's besides the point. The drugs I'm on don't help my mood either. They've had affected everything in my life, including my appearance and my relationships with people I care about, like my husband and my friends. The steroids were the worst part and they're one of the main reasons I spent a good portion of time indoors. While the steroids helped with inflammation and pain, the side effects were less than satisfactory. I gained a considerable amount of weight, so much so that I felt embarrassed to go out in public because I didn't look like myself. I tried everything to get the swelling in my face to go down, but to no avail. I looked like someone who just had their wisdom teeth out on both sides, only it stayed like that for months. On top of that, because of the severity of my kidney failure, my hair had begun to fall out again, so I had to cut most of it off. Although I got used to my new hair cut, the hair loss was still relatively noticeable. I didn't want anyone to see me like that, so I stayed hidden, only leaving to go to work or school, if I had to. It was a tough time for me and my self esteem. No one really prepares you for that when they prescribe you medication.
Due to the strenuous nature of my disease, coupled with the effects of the steroids and other drugs I've pumped into my body, my desire for human interaction has plummeted. After spending so much time in the house, it's been difficult for me to find my way back outside again. I've gotten much better and, since being off the steroids, my face has gone back to normal and I've even lost weight. I have really no reason to stay inside other than the mental repercussions of what I've gone through over the last year. I wanted to tell this side of my story because it's one that gets little to no attention in the world of chronic disease. I'm not the only one who's suffered at the hands of steroids and other drugs with physically altering side effects. I also wanted my friends and family to be aware that even though I may not attend every party or get-together that may come along, I am not avoiding you. I am actively working on getting out more and experiencing things that I used to enjoy. I still have to be careful and it definitely won't be easy, but I will try to make a conscious effort to include myself in things. I'm hoping that next year will be my year to get back to whatever "normal" means for me now. Thanks for reading and understanding. I promise that the next post won't be as deep, but I had to get this off my chest. Until next time, I remain your faithful correspondent.
No comments:
Post a Comment