Why is dinner so difficult?

October 25, 2013

I know the title of this sounds whiny, but I don’t care. I feel whiny.

I was just talking on the phone to someone who worked a full day at a job, then worked out at the gym, then finally got home to rest for just a bit before having to suddenly go out and take care of a sick family member. I spoke to her just after she had gotten home and she was completely exhausted. She was having trouble just getting up and moving around. She was completely worn out.

So was I. That’s why I feel whiny. What did I do today? I had a quiet morning. I met a friend for lunch. We walked over to an eyeglass store and I tried on glasses while she gave her opinion on each. I came home. I read, checked Facebook, answered emails. I was doing pretty well until dinner. Some days cooking isn’t too bad, but this wasn’t one of those days. The oven was on and it was too hot, even though the windows were open. In a tank top, I was sweating. I made something new, and it took too much mental energy. I had to leave the kitchen to sit and rest twice. And that was just preparing the meal. Never mind the effort to eat it or, even worse, wash the dishes.

I’m lucky that I can prepare meals most days. I know that. But still, sometimes I just get so frustrated that cooking one dinner can exhaust me as much as a healthy person on their most hectic, stressful day.

What daily (or near-daily) activity wears you out? What do you feel is so much more exhausting than you ever thought it would be?

6 Comments | Expectations, Fatigue, Frustration, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The one thing I really miss about gluten

October 22, 2013

People ask me all the time if it’s been hard to give up gluten, or what I miss, or how I do it. Even though I used to wonder the same thing about others back before I’d done it, now I find these questions so strange. It’s not hard, because I feel so much better. There’s no question of how I do it, because I feel so much better; willpower isn’t 20131022_204902necessary because there’s no temptation. There’s one thing I really miss, but it’s not what most people think.

I don’t miss the gluten-filled pastas or breads at all. I don’t miss the cookies or cakes, either. Don’t get me wrong, I love all of these things. It’s just that the gluten-free versions are just as good, and I’ve realized that having them less often is fine. In fact, I now only have sweet desserts about once a month, and that’s plenty for me. I stopped eating pizza many years ago because it made me sick, so I don’t miss that. Gluten-free soy sauce is just as good for cooking as the gluten kind. Gluten-free chicken broth tastes as good to me as the gluten type. I know it’s not easy for everyone to find substitutes, and I’m glad that I have these options. I can’t substitute everything easily, of course, but for the most part I don’t care. Some things I have just stopped eating altogether, and I don’t mind. I don’t miss them. And there are plenty of foods that are naturally gluten-free, too. The truth is, my diet is better now, and I’m happy about that.

There’s one thing I miss a lot, though: convenience. I miss being able to leave my house without thinking about what I’ll be able to eat while I’m out and if I need to bring food. I miss being able to go to a friend’s house for dinner without having to bring my own meal. I miss running errands without packing snacks. I miss being out longer than I expected without worrying about what I’ll eat. I miss grabbing a cider donut with my friends while we’re apple picking. I hear that the gluten-free bakery has them but now, weeks later, it’s just not the same. I miss eating Chinese food in Chinatown; now I can only go to certain restaurants that have gluten-free items. Mostly, I miss not having to worry about it what, when, or where I’ll eat.

But I don’t miss feeling sick every single day and that makes the inconvenience completely worthwhile. I do not have any desire to “cheat” on my gluten-free diet and I doubt I ever will. The benefits are just too great to give it up for a bit of cookie.

12 Comments | Decisions, Limitations, Medication, Raves, Symptoms | Permalink
Posted by chronicrants

Sometimes I want someone to get as sick as me

October 17, 2013

I’ve always been a kind, generous, compassionate, empathetic person. I know that sounds like bragging, but it’s just the truth. I always want to help others and I never want anyone to feel sick or hurt in any way. A friend posted a picture on Facebook today of circus elephants and all I could think was, “Those poor elephants!” So you can imagine how hard it is for me to admit that sometimes I want others to get as sick as I am.

For a long time I’ve fought this. I’ve tried to tell myself that I didn’t really mean it when I thought this way. But that wasn’t true. The truth is, there are some people who I want to feel bad. I don’t feel this way about all people, of course, but it’s still there.

But when someone says that all people wanting prescription painkillers are just trying to abuse the system, I want them to feel horrible, chronic pain. I want them to be in pain every single day, horrible pain, can’t-think-properly pain, want-to-cut-my-arm-off pain. I want them to know it will be for the rest of their life. Then maybe after a few weeks, after they’ve had to deal with the physical, emotional, and social fallout, then maybe they can feel better.

When someone suggests that I should really be well enough to work, that a little exhaustion can’t be that bad, I want them to experience my exhaustion. I want them to miss friends’ weddings, fun outings, living life, having a job, feeling young, feeling independent. I want them to worry about ever dating, getting married, having children, having pets. Then after they’ve fully experienced the horribleness of it, then maybe they can get better.

When politicians say that the already underfunded Social Security Disability system should be cut back because of fraud, I want them to get so ill that they can’t work, apply for benefits, get denied, appeal, get denied again, and then question how they will pay rent, buy food, and live in general. After they’ve fretted and suffered for a while, then I suppose they can get better.

When someone says that we don’t need healthcare reform in this country I want them to get really sick and try to get care. I want them to see that even with health insurance, it can be very expensive. I want them to see that health insurance doesn’t cover it all. I want them to see how hard it can be to get health insurance and how easy it can be to lose it. I want them to spend dozens of hours fighting with insurance companies instead of using those hours to get well. Then they can get better.

When someone judges me, thinks that I’m not too sick to do the things they can do, thinks I shouldn’t be out of work or “acting” sick, I want them to get exactly what I have. I want them to feel the exhaustion, pain, and fear, all while “looking good.” I want them to be judged and to have to defend themselves constantly. I want them to break down crying because it’s all too much. Then I suppose they can get better.

You see, I don’t want these people to feel as sick as me forever. I’m actually not all that vindictive. But I want them to feel it for a while so that they understand. So that they have some compassion. I just want understanding and I really don’t think anyone can understand unless they’ve been through it.

I hate to admit all of this. Today was the first day I admitted my true feelings to myself. Maybe it makes me a horrible person, maybe not. But it’s how I feel and I won’t pretend otherwise anymore.

19 Comments | Educating, Expectations, Frustration, Insensitive, Intrusions, Isolation, Rants, Symptoms | Permalink
Posted by chronicrants

My pajama radius

October 8, 2013

I was watching How I Met Your Mother the other day and they did a joke about Marshall’s “underpants radius.” Ted explained that, “Everyone’s got an underpants radius. For most of us, it’s the distance from the bedroom to the bathroom, but as your self-esteem gets smaller, your underpants radius gets bigger.” Apparently, as Marshall’s unemployment dragged out, his underpants radius increased to laying on the couch, to getting the newspaper, and eventually to going to a restaurant in his underpants.

That got me thinking about my pajama radius.

I live in an apartment building. I also live alone. It used to be that I wore nothing more than underpants between my bedroom and my bathroom, but I covered up to walk to another part of the apartment. Occasionally, as I was getting ready for bed I’d realize I’d forgotten my book or something in the living room. I sleep naked. I used to cover up to get the book, but after a while I just covered my breasts with my arms and ran in, keeping the lights off. Eventually I didn’t bother to cover up or run, but I kept the lights off. Then I’d need to get something in the kitchen after my morning shower but before I’d gotten dressed, and I’d just walk in naked, even during the day. Even with the shades up. But hey, this was all in my apartment and it was my body so it was ok, right? It was also when I was feeling fairly healthy.

A funny thing happened when I got sicker, though. I began to spend a lot of time in my pajamas. They started to feel like “real” clothes. It used to be that when someone came to my door and I was in pjs, I’d throw on a bathrobe or a sweatshirt before I’d answer their knock. Now I don’t bother. Then I started wearing pajama bottoms to take out the trash in the evening. As I felt even worse, I’d just wear full pajamas to take out the trash. At some point, wearing pajamas to check the mail in the lobby seemed ok. I began to have visitors while I was in my pjs. And then last week, I found myself wearing my pajamas as I walked my friend to her car across the street so that I could get back my parking pass.

When did this happen? I know it’s been in the last few years that my pajama radius has spread. It seems to come from two health-related things: quality and quantity. Sure, as my health gets worse I wear my pjs more. But also, the longer this goes on, the less I care. There are more important things in life to worry about than whether a neighbor sees me in my pjs. I don’t care if a neighbor sees my hair messed up or my boobs swinging freely under a pajama top. If I let them see me when my insides feel like crap, why should I care if my outsides look like crap, too? Society says I should care, but society averages towards feeling healthy. I do not.

I suppose the only question is, does this matter? I’m guessing it does. But I just don’t care.

8 Comments | Decisions, Isolation, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

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