It was a rough weekend. Despite doctors’ orders (yes that is plural), I pushed myself and went to the zoo, hung out with friends, and generally pushed myself too far. My gastroparesis had been brutal. When you have plans, but not enough nutrition or fluids, those plans become more complicated. Throw in the added benefit of an autonomic nervous system that doesn’t know how to actually regulate things, and you get a disaster. The first day/night with friends ended with me watching everyone eat, while I sipped on water and ended with me stumbling home looking drunk because my blood sugar was painfully low.
The next day was the zoo, and while various doctors have requested I used a wheelchair during such outings, a new friend became overbearing with her questions. Did I want it? did I need it? Wouldn’t it be easier to get one in the beginning? Whether or not she intended to be condescending, the various questions regarding how I was feeling, along with her actions, made me feel like a complete invalid. Did I actually need a wheelchair to navigate the zoo? Absolutely. Was I willing to admit this? No way.
I did make it the entire day without a wheelchair, but it wasn’t easy. I opted to forgo food, minus two packets of mini-cookies. I drank an Icee because I knew it would get me both water, as well as sugar. That Icee was probably the only reason I lasted the entire day. My good friend was impressed by my ability to push through and make it through, while the vibe from the new friend was less than stellar. I didn’t really have time to process her confusing judgment of my state of well-being. I was seriously hurting.
As I sat in the car, I felt my muscles give up. Somehow I managed to get out, to the restaurant, where I again watched everyone eat, and then I managed to get into an Epsom salt bath. If you’re wondering, this was great for my aching muscles, but terrible for my autonomic neuropathy. Luckily the apartment was super cold, so I didn’t have too much of a struggle.
So what was the correct course of action? I should have used the wheelchair, or not have gone at all. It’s hard to admit you can’t do certain things, at least without assistance, so sometimes those of us with chronic illnesses end up making ourselves sicker. Today I’m miserable. I had to eat more to account for the calories burned at the zoo, and the muscle tremors that developed after, but my stomach can’t handle it. Worse? The lactic acid build up is making me feel even more awful. I wanted to show someone that I wasn’t an invalid, that I could do what everyone else could do.
I think I also wanted to show myself I could be “normal,” too.
Take a break. Say no. Use the damn wheelchair. True, it may suck, and it may make you sad or angry (or both), but it’s better than brutalizing your body. There are times when pushing yourself makes sense, and there are other times when you just have to take the loss for what it is. I am sick. I have autonomic neuropathy, and Behcet’s, both of which contribute to my gastroparesis and intestinal dysmotility.
I was thrilled today when my stomach grumbled…but my intestines decided they weren’t going to play along. It ought food sitting in my stomach was bad, but I’d forgotten how bad it feels for food to sit in my intestines or colon. I left looking seriously pregnant, and with horrible stomach pain. This is just my life when I don’t play by the chronic illness rules. In no way am I complaining, or asking for sympathy…I just know that this is something other people with chronic illnesses need to hear.
When you’re put in a position with someone who judges you because of what you can or can’t do, the medications you take, or your illness in general, find a way to politely explain the reality of your situation. If they fail to respect you after that, then politely remove them from your life. There will be people who judge you, push you beyond what is safe, or even try to take advantage of you because you’re sick and they perceive you as weak. Don’t let people who don’t respect you, or accept you, run your life.
I am who I am, and I have what I have. Treatment options are still being evaluated. Picking on me when I just finished a steroid taper, and can’t eat enough to prevent chronic hangry-ness, is really a bad idea. I am grateful that I managed to keep it together, though, because the urge to fly off the handle was strong.
Truth be told, I’m extremely sensitive about my health. I don’t like feeling weak or vulnerable. I can logically accept the reality of my situation, but it doesn’t mean I’m prepared when people are hostile or demeaning. Even if I were to see a list of the good things I do, and the good things about myself, I would feel as though my health eclipsed all of that good. Even though I don’t define myself by my illnesses, I feel as though my own identity gets lost behind what my illness pushes to the forefront.
I can go out, but I can’t walk long distances without assistance.
I will gladly go with you to a restaurant, but I cannot eat food.
I can stay up late, but I’ll need to nap and sleep in.
I can be your friend, I just may not always be ready to go at a moments notice.
The biggest thing is that I am still myself. I like to volunteer, read, and look for nerdy t-shirts. I love my dogs. I’m a student. I’m a nerd. I’m an introvert that likes live music. I am so many things, but I’m also sick. Perhaps I haven’t fully accepted the reality of my illness. Even if I were to go into remission tomorrow, I would still have what I have. I would still need to be vigilant about what I am exposed to, and any potential symptoms that arise. My wheelchair won’t be something I love, but it will be something that allows me to do the things that I do love.
So, if you’re struggling today, know that even those of us who look like they have a handle on things, struggle, too.
You are stronger than you know.