Summer Time Sickness
Now I don’t want this to be a pity party for me and I don’t want to come across as bitter, but I want to simply share my reality and how I am feeling at the moment about such a reality. You see I have a lot of autoimmune diseases that are wreaking havoc inside my body all day every day. There is not one minute where I have a moment of peace from them. The wild thing about them is that some are contradictory to one another. Some have very similar symptoms and but then there are the ones that have nothing in common with one another. I actually have some that I refuse to treat and to have listed on my medical information charts because I see no need in having duplicate symptoms and the medicine that would be prescribed for them either counteracts what I am already taking or in some cases is very much the same as to what I am taking now. Along with these diseases comes the medication that I have to take each and every day and night. I swallow handfuls of pills and try not to throw them back up or choke on them as I gag them down.
In dealing with this life, I now lead; I feel like I am being cheated out of the life I was supposed to live. This is not how my life was supposed to turn out! I had plans, grand plans and now those plans are simply a fantasy that sometimes I visit in my dreams. Those dreams are wonderful while they are happening but then I wake up and have to face the sadness that it was all an illusion. It was an illusion that will never see the light of day in the real world. My reality is already assigned to me, and it is not one that I would have ever signed up for had I known what was coming. My reality is heartbreaking in the harsh light of the day and depressive in the midnights where the shadows of pain fall upon me. The thing about all my diseases is that they are all invisible to the naked eye, no one really knows what I am dealing with each minute of the day unless I tell them or I post a picture looking raggedy and sad. Most of the time the pictures don’t’ even really tell the story of what Is going on inside of me and my body. I’m not sure how to even show what is happening unless I were to draw all over my body with sharpie markers and then I don’t think that it would still do it justice.
I can’t describe how it feels but what it feels like is something that most people haven’t even experienced in their life time. They might have seen it in movies, plays, or heard about it second hand from those that have experienced it. I describe it at times like going three hard rounds in the ring with Mike Tyson. Now I have never gone even one round with anyone in a boxing ring so I am not even sure what that would feel like, but I have seen a lot of movies and I have seen a few live boxing bouts and heard the hits that the boxers take and have seen the aftermath of the bruises they have endured on their bodies. So based on that I can just imagine what it feels like and I feel like that on a daily basis, every minute of every day. I’ve been lucky that my doctors have allowed me to see all of my scans, all my tests, everything that I have had done. I, along with my doctors, have been amazed at what the images and tests show that is happening within my body. If the images are set to show inflammation, then the image glows brightly because there is so much inflammation throughout the entire body. It’s been interesting because bruises inside show up on scans as well and they light up showing the pain I experience. So, throughout the scans I light up like a Christmas tree, it is very interesting but scary at the same time. I just know how I feel and how it doesn’t really ever show on the outside, so no one can truly see how I am feeling.
This time of year, is especially hard for me because I am scrolling through social media and see the highlights of summer fun, I see the reels and Instagram stories of people I know and some I don’t that just show up on my feed. Each of these images shows people in tropical locations, having tremendous adventures as a family, seeing husband and wives having intimidate vacations, spending quality time together away from the stresses of the world. Beach trips, lake trips, even mountain trips fill my pages. As I see these images my heart breaks just a little bit each time. I find myself comparing their adventures to my pain filled days, I feel terrible because I feel like I am holding my husband back from things he might enjoy (he tells me that he is fine because he truly does not like to travel -which I do know is true but still). As I lay on the couch, I find myself comparing these images with the hotness of the blankets I have piled on me for pain management, I find myself comparing my views from the hospital windows with the views from the windows of people’s houses. I find that I am claustrophobic in my own skin most days, I feel the walls of my house closing in on me as I see others roaming free throughout the world. I feel sad, angry, and most of all disappointed because I have no idea what I have done to deserve this life and what this is supposed to teach me and how I am supposed to survive living like this for the next forty years.