I’m still working on accepting the new normal, but until I hear from all of my doctors, I can’t quite bring myself to the point of acceptance. Over the past month I’ve dealt with some more odd symptoms. The biggest is feeling like I’m being splattered with water, only to find that I’m completely dry. When it first began happening, it was usually in the evenings, and outside. It was easy enough for me to just assume the sprinklers had come on somewhere. Then it started happening inside, too. I realized that it was just an escalation of an earlier sensation I’d felt…as though a bug had landed on me.
When symptoms crop up, and stick around, or evolve, it’s a difficult thing to process. You’ve spent years with symptoms coming and going, with the only eventual result being an overall worsening set of seemingly interconnected symptoms. So, when my pinky and ring fingers began to go numb, it was terrifying. Pain in my hips led my rheumatologist to double up on my antidepressant, as it is often used to treat pain. So far the only result has been a steep increase in my nausea. Now both legs, especially my lower legs, have begun to do what my pinky and ring fingers began to do…tingling. I can make myself walk, but I can’t feel the motion well, as the only sensation I have in my feet and calves, is that of dull pins and needles. The fear I have is that, like my fingers, this will evolve into serious numb spells.
I also feel as though my digestive issues, are neurological. Why? Well, for starters, my limited to absent bowel sounds, suggests that my guts aren’t getting the message to keep things moving. After 4 days without a bowel movement, my stool softeners were doubled, and laxatives were added. I still didn’t have a bowel movement until day 7, at which point I had severe diarrhea, and even fainted. As quickly as it all happened, it was over, and once again I had no bowel movements for 4 days. The only reason anything happened on day 5, was that I accidentally ingested gluten. Even that didn’t prompt an actual normal bowel movement, it just caused a lot of pain, and some diarrhea, diarrhea that I could tell was moving around larger portions of hard stool. Oh, and if you want to know fun, experience the urge to strain, when you’re just trying to pass liquid stool. Mind blown that I had to work to expel what was (basically) just water. The pain associated with all of this is absolutely excruciating. When you find yourself curled up on a friend’s floor, with pain so intense you can’t decide if you’re going to vomit, pass out, or both, well…it’s hard to accept.
A big part of my ability to accept whatever my new normal will be, is that people around me don’t seem to understand. My autonomic neuropathy has left me exercise intolerant. I’m thrown into tachycardia with even the simplest of tasks. And while some days are better than others, I don’t always know how I’ll feel 15 minutes later. I’ve been told recently that I should exercise more, that it will cheer me up, and that the exercise itself will help me with my sluggish bowel movements. It’s was so hard not to burst into tears. I tried my best to explain exercise intolerance, and how working out would likely result in a worsening of my symptoms. Working out will throw my into an extremely high heart rate, in an extremely short period of time, and that means vomiting, fainting, or both.
Still, the person insisted that I should at least try it. I’m doing physical therapy, I’m walking my dogs around the block 1-2x per day, and I do plan on getting into more resistance training in the apartment. I don’t plan on going to my complex’s gym, because, while I do live across the street from the facility, I also live up one flight of stairs. Those stairs are often my nemesis, without having hit the gym. Those stairs and I have had late night conversations, as I struggle to ascend to my apartment. I’ve sat on those stairs and cried, because I’m 32-years-old, and fighting to get up one stupid flight of stairs. These are things that most folks can’t understand.
Sometimes I wonder if I should stop trying to look healthy. I put on makeup, I smile, I focus on anything I can to avoid slipping up and showing just how crappy I feel. So people say I’m looking well, or good, and that I’m clearly feeling better. They are so excited that I can’t bare to break their image of who I am, and how I am. So I nod, I smile, and I do my best to stay vertical and engaged. I’m not engaged, of course, I’m thinking about not throwing up, passing out, or saying something that indicates just how foggy my brain is. I’ve mattered the nod, and smile. Perhaps if I left my hair in the messy bun it usually lives in, and worse my sweats, and skipped the makeup, people would see me for how I feel. Of course, my illness isn’t who I am, so I don’t give into that option, even if it makes my life more difficult.
When you tell someone who is chronically ill, that they’re looking good, or that they’ll be back to “normal” in no time, you’re not always being as polite as you may think. For me, it can be frustrating. When I feel the worst I’ve felt in a long time, I often slowly do my hair and makeup throughout that day, so that I can look well. Looking well does help me mentally, and that in turn is a positive thing I do for myself. That being said, I am then told I look better, when I’m actually feeling worse. It makes it hard for me to say no to things, and it makes me feel guilty if I complain about how I’m feeling. Being told I’ll be back to normal, is also frustrating. No, it’s infuriating. What the hell is normal? Is normal the act I put on in the beginning so that people wouldn’t know I had medical problems? My health has deteriorated significantly, then improved in some ways, but I’m just as sick, if not sicker.
Chronic illness is chronic. I would love nothing more than remission, or a cure, but that won’t fix the damage that has been done. There is this idea that I can go through some series of drugs, treatments, or surgeries, and end up back at human being baseline. I can’t, and therefore I won’t. My new normal is still defining itself. Being told I’m going to get back to an old model of normal, is flat out discouraging. What am I fighting for, if everyone around me wants me to fight for the impossible? Optimism is wonderful, but a dash of realism is necessary to actually remain content. If I were to sit here and say, “You’re right! Eventually I’ll be able to eat what I want again, walk normal no matter the temperature, and be rid of my chronic nausea,” well, I’d be really setting myself up for a fall.
Sometimes lately, I find myself wondering if my friends are going to leave me. Many already have, while others remain, but mostly only contact me digitally. They have parties and do things, but I’m not invited. Even if I couldn’t make it, to be invited would at least show that they still consider me equal to our other friends who were invited. When I’m not invited to things, it does hurt. It makes me feel like I’m not the same as my friends. It makes me feel as though I’m doing a bad job at attempting to pass as capable. Then I have to realize that I can’t pass as capable because I’m not capable. I can do things, but I have to do them differently. It’s all just a jumbled mess right now, threatening to crush me beneath the confusion of who I am, and who people want/need me to be.
I just hate being told that I’ll be back to normal, or that doing something my body cannot physically do, is how I’ll achieve a healthier body. It is so hard to make others understand that I’m not saying I can’t because I’m weak or afraid. I’m saying I can’t because it is legitimately dangerous for me to be doing those things that I’m being told to do.