Phrenectomy

Hello, and sorry for the brief absence. I have been battling an extreme bout of fatigue and exhaustion recently. On that note, today I am irritated about the notion that disabled people deserve to live in poverty amongst other unsavory conditions. When will the world realize that we are human beings too? I’m also getting increasingly tired of people thinking I’m not disabled because I often look “put together” and “don’t act like I’m sick”. I’m sorry, I didn’t realize I needed to be actively/visibly suffering to deserve compassion. I didn’t realize I needed to be “ugly” and “unkempt” to qualify as disabled. God forbid disabled people look nice, or have a good day, because then our disability card is revoked. God forbid that humans have a little humanity. In my specific case, I’m tired of having to keep my struggles with disability hidden. I’m tired of using the stairs when there’s a ramp just because my friends are taking the stairs. Ramps are easier because walking at an incline is far preferable to leveraging your entire body weight up one stair at a time. I’m tired of asking people to slow down when they walk. I’m tired of asking if we can take a breather. I’m just fucking tired. I don’t want to be an inconvinience anymore than you want me to be. I read a quote the other day that said, “People visit the acutely injured with patience and gifts, but they visit the chronically ill with advice. If they even visit at all.” And that’s my biggest issue as someone living with chronic illness. It’s the advice, the whole slew of well-meaning suggestions that drive me up a fucking wall. I want to shake people by the shoulders and scream, “don’t you think I’d have done that already if I could?” I’m disabled, not stupid. But it’s all the same to some people. As previously mentioned, I’m aware this advice isn’t meant to be as upsetting as it is. But am I not allowed to be upset? Sometimes I feel like I’m not allowed to be angry or saddened by my condition, because that’s apparently an invitation for advice and trying to “cheer me up”, which usually consists of other things people say about my disability that make me feel like shit. I’ll admit, things have been going physically downhill lately, and I am scared for my health. But I don’t want to hear some sugar-coated bullshit about how I just need to rest or exercise or breathe differently. I appreciate that people want to help me, but if you really want to help me, you’ll stop trying to help and simply just be with me. If you want to help me, you can listen to me. You can allow me to be upset; you can sit with the discomfort for a couple of minutes that I have to live my entire life with. To complain further, it feels like I’m losing the vocabulary needed to express how I’m feeling. “Exhausted” just doesn’t cut it anymore. Everyone’s exhausted, so what? But when I say I’m exhausted, I don’t mean exhausted. I mean that I’m at the end of my rope. I mean that I can’t take care of myself anymore. It’s more than exhaustion; it’s energy debt, and I’ve been stuck with it since I was 15. I don’t know how to clearly explain the level of tiredness that I experience. It begins to really hurt sometimes. My eyes begin to feel misplaced in their sockets, my chest tightens, my muscles cramp up, and breathing becomes harder. Everything hurts, and when I say everything, I do genuinely mean everything. Feeling misunderstood in your pain and illness is a whole other trigger for me, too. When I say I’m experiencing extreme exhaustion or something similar, and people assume I just mean I’m really tired, that sends me over the edge. I feel like I’m constantly yelling and screaming and howling about my pain, and everyone thinks I merely scraped my knee. I just want to be taken seriously. Anyway, my love today goes out to those in similar situations. To anyone who’s more than tired, who’s running on empty, and in a whole shit load of pain, I see you. I am with you on that. Remember that your quality of life matters just as much as your physical well-being. You don’t owe it to anyone to be “strong” or an “inspiration”. Go do something that makes you feel good today.