Yeah, I look normal. Fat, but normal. Short, but normal. Brown-haired, brown-eyed, but normal. Rosacea-faced, but normal.
I’m not “normal”. I have invisible illnesses. I have issues that most people wouldn’t understand. I have to do things and live in ways that most people can’t understand.
I loathe being judged for how I manage my life. It’s rude, it’s insensitive, it’s unkind. If you don’t know what someone is going through, consider giving them the benefit of the doubt. Consider that someone outside your tiny world is living their life the way they have to for their own reasons.
Once again, our air conditioning is not working right. We have an upstairs system and a downstairs system. It almost seems like our upstairs system is FINALLY working properly after years of instability due to refrigerant leaks that no one could find the source of. But now, our downstairs system is acting up. It’s been tripping our circuit breaker randomly. Seems to be at the end of long, hot days, so we assumed it was being overworked. Then it started happening more often recently. This morning, it was tripped when I went downstairs first thing this morning. So I went to the electrical panel and reset the breaker, assuming it must have tripped last night because of the humid weather. Before I could leave the room where the panel is, I heard the circuit breaker trip again, almost immediately. I went back to reset it, but again it tripped right away.
We’ve already had an electrician out to check the breaker, which is fine. Last week, we had an a/c guy out to check the system because of the repeated tripping of the breaker. He found nothing, but suggested that based on the symptoms, it was likely our compressor was going bad. It’s not even six years old. But he wasn’t confident that was the problem, so he left with the suggestion that we consider a maintenance contract, but because we’d already established a potential problem, the contract wouldn’t cover that. So WTF was the reason to get the contract? Now, today, the breaker wouldn’t stay on, it kept tripping, which meant a call to another a/c company to see what THEY had to say. Which also meant in today’s hot and humid weather, we had no a/c on our main floor.
I have incredible heat intolerance, and my body does not regulate heat/cooling very well. That means if I go outside and it’s hot and humid, when I come inside it takes me hours to cool off, even when our house is well-climatized. In addition to the heat intolerance and regulation issues, I also now have hot flashes to deal with. If you have hot flashes, you know that for some reason your body does not dissipate that heat very well. It’s like you are being boiled like a lobster without any relief. I wear sleeveless shirts every day, all year round. I overheat so easily, it’s ridiculous. And once I overheat, it can linger. I keep ice packs in the freezer to help me when I get desperate for relief. Also, parts of me get cold from being in the cold (fingers, toes, arms), while the rest of me is hot. WTF.
The a/c guy who came today did all his tests, got the system running, but couldn’t find the actual problem. Could be X or Y or Z. Potentially Z could be the compressor, which turns out to be almost $1300 to replace, not including parts as those are under warranty. The a/c guy, as he was taking my money for the visit, asked what we normally keeping the house temperature at. I told him 65 degrees (although upstairs it’s lower) and he looked like he wanted to pass out or throw up. He told me that’s probably why the compressor is giving out so soon. He told me, “you’re killing your compressor. you really need to have the house set at 70 degrees. a normal setting would be 72 degrees.”
When the house goes up ONE degree, I can tell. When it’s 2 degrees over what I’m accustomed to, I get hot. I know when the a/c has tripped the circuit almost right away. This person, who has no idea about my life, my pain, my heat intolerance…he has no right to judge how I keep my house. Of the things that I have to live with, this one I at least have some ways to help myself. I keep my house like a refrigerator because I have to. I don’t have a choice. I didn’t choose to be this way. I didn’t ask to have these issues. I am living the way I am because I have no other way to live.
I can’t even tell you how difficult it is to be this way and have to be somewhere other than home. Heat can trigger a hot flash, which exacerbates the problem. Even at my dad’s house–where he keeps his a/c at 72 degrees–I am incredibly uncomfortable. In restaurants, I am always hot, which really ruins what could be a good meal and a relaxing evening. Go to someone else’s house? The doctor’s office? A store? A movie? A concert? The library? The hair salon? Even in a cotton tank top, I overheat. It SUCKS.
I’m still feeling crappy. Almost all my joints hurt. All my muscles feel weak. I’m really tired. Next week, I have an appointment to see a neurologist because my primary has no clue what to say to me. She went through the suggestion of virus, sinus infection, allergies. She told me to move around more, to drink more, to rest more. I have trouble getting up on my feet, standing on my feet, walking, sleeping, sitting, bending, moving…I’m going to have to explain all that to the neurologist who knows nothing about me. I’m hoping for compassion and understanding and open-mindedness. I expect none of it based on previous experience with doctors.
People who look at me don’t see my pain. They don’t know from looking at me that I have a shoulder impingement so I can’t lift my arm, or pick things up, or weed my garden. That random movements of my arm sends shooting sciatica-type pain down my arm. Sometimes petting the dogs hurts. I can’t put my clasp bra on normally anymore. Pull-over bras are almost as difficult to get over my head. Pulling shirts over my head hurts. Opening doors with that arm hurts. Reaching for soap with that arm hurts. They don’t know from looking at me how much harder it is getting every day for me to wash my hair. I can’t shave my armpits because I can’t lift the bad arm and I can’t reach the other pit with the bad arm. They don’t know that standing on my feet hurts my ankles and my knees, or that bending over hurts my shoulders and my neck. They don’t know that sometimes (but not every time) turning my head can instigate imbalance. They don’t know that when I stand up (or sit down even) it feels like the muscles in my legs might not support me, and/or that I feel like I’ve run a hundred miles (but really I can’t even walk a mile). They don’t know that I can’t pick things up because my arms feel weak, and I often worry I’ll drop whatever I’m attempting to pick up. They don’t know that I worry that I can’t take care of myself during the day, let alone take care of my dogs, because of these things they can’t see.
I look normal, but realistically I am anything but. You can’t see it, but it’s true. It’s anything but easy, but this is the only life I have. I already know that I have to spend more, do more, prepare more, worry more because of how I am…you poking at me for having to do those things is cruel. You judging me for how I have to live my life is shitty. Don’t do it.
(obv this isn’t aimed at my readers, so take no offense, I just needed to rant)