Why don’t I cry?

November 25, 2013

Sometimes I wonder why I don’t cry more about my health situation. I certainly have good reason to. Sometimes I want to, but I don’t. And I wonder why.

I just emailed a bunch of loved ones to let them know that my new, long-awaited treatment isn’t working. I thought about the many options I can try out next. I thought about the months and months of trial and error, of hope and despair, of improvements and horrible side effects, that now await me. I thought about it all, and I wondered why I wasn’t more upset.

Right now I am wrapped in a blanket. My hands are so cold that it’s hard to type. Yep, we’re getting some early winter weather here in New England. I want to take a hot shower to try and warm up, but I’m too tired to manage it. Should I want to cry?

I’m sure that part of my lack of crying is my positive attitude. I’m cold, but at least I have shelter, warm clothes, and the ability to get warmer if I have to (I can drive to a friend’s house, complain to the landlord about the lack of heat, etc.) My treatment isn’t working right now, and trying others could be tough, but at least I have options. That’s a hell of a lot more than what I had two years ago. Or even 1 year ago. Or even earlier in 2013. Overall, life isn’t that bad.

Then again, it isn’t all that good, either. My life is tough. Sometimes it really sucks. I want to date and have a job and play sports or even just take a long walk. Yeah, it sucks. But a long time ago I promised myself that I wouldn’t constantly get upset and cry over it. The thing is, I made that promise to myself about 20 years ago when I was a kid. I had always been a crier, and I didn’t want to be considered a cry-baby. Also, I was trying to prove to myself that I was stronger than my pain. That made sense back then. I occasionally cried over the pain, just like I occasionally cry now when it’s really bad. But the thing is, I still only cry when it’s really horribly extremely bad, and maybe there are other times when a release of emotion would be good for me. My health situation is much worse and much more complicated than it was 20 years ago. Back then, it was sporadic pain. Now it’s constant pain, fatigue, digestive problems, and more. Back then it didn’t stop me from doing anything other than certain sports. Now, it stops me from participating in so many important facets of my life. So why don’t I cry more often?

I don’t know what the answer to that question is. Maybe one day I’ll figure it out. Maybe I won’t. Right now I don’t think it’s important enough to worry about it actively, but I like to be self-aware, so I’ll keep it in the back of my mind and maybe the answer will come to me. In the meantime, I’m not in denial and I’m not suppressing my emotions. I know all too well what my situation is and I’m facing it head-on. And that feels good.

Plus, I have this blog as an outlet. I can’t believe I’ve written almost 400 posts now. I’ve found writing it to be very cathartic and the readers to be very supportive. So thank you all.

I admit it, I don’t have an answer. I don’t know why I don’t cry more. And right now, that’s ok.

4 Comments | Educating, Expectations, Fatigue, Frustration, Limitations, Medication, Pain, Support, Symptoms | Permalink
Posted by chronicrants

Giving in to yoga pants

November 23, 2013

It started in college. One summer a friend at I got an apartment. Every day after work she would change into “comfy clothes” as soon as she got home. She acted like this was normal, but it seemed to odd to me. After all, it’s not like she wore suits to work. But by the end of the summer, I was doing it too. It felt great to wear something stretchy and comfy instead of jeans or whatever. I was hooked.

More than a dozen years later, I still do that. The difference is, since I’m not working now, and I don’t feel well enough to be out all day every day, I spend a lot of time at home. That time at home means lots of time in comfy clothes. Sure, I could get formally dressed in the morning, but if I’m not going to leave the house, then why bother? In the summer, I’d rather get my “house clothes” sweaty instead of my “going out” clothes. When I cook, I’d rather spill on house clothes than going out clothes. I don’t have to own as many going out clothes if I’m mostly staying in, and when I’m in I don’t mind wearing the same thing over and over (as long as it’s clean.) And mostly, I just want to be as comfortable as I can be.

Last winter I didn’t have a ton of pants options for around the house, but this year I have fewer (one pair doesn’t fit, another has holes, etc.) I did ok by wearing my fleece pajama pants around the house for the last two months. They’re warm and so comfortable. That worked because I slept naked, so I wasn’t wearing the same pants all day long. But then it started getting colder, and I needed to sleep in my pajamas – can you imagine? Suddenly, I didn’t have much to wear around the house.

A couple weeks ago I was at a store buying something I really needed. Yoga pants had been on my mind for a while. Everyone swears by their comfort. I had tried a pair on recently and loved them, but felt I didn’t need them and couldn’t justify the expense of the purchase. Of course, that’s when I was still wearing my pajama pants during the day. So while I was in that store, I tried on a bunch of them, and WOW! I bought two pairs and I’m wearing one right now. They could even pass for going out pants if need be. That means that if I just need to run a quick errand, I won’t feel like I have to change, then change back in 1/2 hour. I can just stay in them. Most of all, they’re just so comfortable. They aren’t tight on my tummy, something that really bothers me both physically and emotionally because of years of physical discomfort there. They keep me warm. They were inexpensive (under $20 each.) They aren’t too tight around my legs and I don’t feel the material pull as I bend my knees, something which can bother me in jeans. And since they’re meant for yoga, I can comfortable wear them when I do my physical therapy exercises.

I’m not trying to tell a style of pants. I’m trying to sell the idea that when we’re dealing with physical discomfort on a regular basis, we deserve to be as comfortable as we can be, as much of the time as possible. That’s what I love so much about these pants, the comfort. We all need to find that comfort. For some that will be a certain style of pants. For others it will be blue-light filtering sunglasses. For others it will be just the right shoes. Hell, I could have just as easily written this about my new-found enjoyment of wearing a bra less often. But I guess that’s a story for another day.

14 Comments | Educating, Expectations, Limitations, Pain, Raves, Symptoms | Permalink
Posted by chronicrants

Disappointing others with a lack of answers

November 18, 2013

“How are you feeling?”

“Is the new treatment working?”

“When do you think you’ll feel better?”

My guess is we’ve all heard at least one of these, or something like them. I’ve been hearing them more and more, and I’m getting increasingly frustrated at having to answer these questions. I appreciate that people care. And there’s nothing wrong with the questions. When I tell friends and family that I’m starting a new treatment, I think it’s great that they’re thinking of me and wanting to know how it’s going. The problem is the expectations behind the questions.

Let’s face it, “Is the new treatment working?” is really asking if I’m feeling better yet, because they want me to be better. I’m glad they want me to be better, but it’s not that simple. And how do I say that I feel 10% better but not 100% better? It’s so hard to explain that. “Health” people are used to getting sick, taking an antibiotic, and being well. They don’t understand decades of illness followed by medications that do nothing or very little. They don’t understand that when a treatment “works” it may not be a cure. It may not get rid of the problem. It may just improve things a bit.

Every time I get those questions I want to be able to tell the asker that I’m doing great, I’m feeling better, the treatment is working, I’ll be healthy any day now. But that’s just not how it works. That’s not how my life works. So I disappoint them with the truth. What else can I do?

13 Comments | Educating, Expectations, Frustration, Isolation, Medication, Rants, Support, Symptoms | Permalink
Posted by chronicrants

Why do we let our illness props embarrass us?

November 10, 2013

The other day I was talking to someone who often carries a pillow with her. Due to a back problem, she needs the pillow for sitting in certain kinds of chairs. She said she’s embarrassed to be seen carrying it around. I was surprised. Another day I Handicapped Parkingwas talking with a friend who’s embarrassed to park in handicapped spaces. She knows she needs them, but she looks healthy, so she worries about what other people will think. I tried to encourage her to get the pass, but she refused. These are two stories, but there are so many others. I hear these kinds of things all the time.

ENOUGH!

I’d like to say that I never let those things embarrass me, but it wouldn’t be true. I’ve come a long way, though! Occasionally I worry about what other people think, but then I remember that my health is more important that what strangers think of me. And besides, who are they to judge?

It helps to remember, I’m not the one who should be embarrassed! And neither are you!

If I need to ask for a seat on the train, why I should I be embarrassed? The people who should be embarrassed are the ones who don’t immediately offer up their seats. The people who should be embarrassed are the ones who don’t get up for the pregnant lady with 2 kids and groceries who steps on the train. The people who should be embarrassed are the ones who listen to music so loudly that it bothers other passengers.

When I park in a handicapped space I am very aware that I do not look like I have any disability. But why should I be embarrassed? The people who should be embarrassed are the ones who judge me without knowing me. The people who should be embarrassed are the ones who “borrow” a relative’s pass even though they themselves don’t need it. The people who should be embarrassed are the ones who park horizontally, taking up 3 spaces in the lot just so their car won’t get dinged by someone else’s door.

Sometimes I need a wheelchair when I’m in a place that involves a lot of walking. Sometimes it gets in other people’s way. But why should I be embarrassed? The people who should be embarrassed are the ones who get annoyed at me and say rude things. The people who should be embarrassed are the ones who don’t take 2 seconds from their day to open a door for me. The people who should be embarrassed are the ones who are so preoccupied with whatever they’re reading on their smartphones that they bump into other people.

Needing some sort of help for the sake of our own health and well-being is absolutely, positively, without doubt, in no way any reason at all for embarrassment. Rude, inconsiderate behavior is. So be a good, nice, helpful person for others and you’ll have no reason to be embarrassed. And if someone says something anyway? Do what I do: simply, calmly, and matter-of-factly tell them why they’re wrong. Then walk (literally or figuratively) away with your head held high.

10 Comments | Decisions, Educating, Expectations, Frustration, Isolation, Kindness, Limitations, Parking, Symptoms | Permalink
Posted by chronicrants

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