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.


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.


Handling the “too much”

November 14, 2013

This month’s topic at Patients For A Moment is this question:

So what do you do when you feel like everything is just too much?

I wasn’t going to answer it, but then I started thinking about all of the times I really couldn’t handle everything and how I responded to it, for better or for worse. I figured I’d share some of it. And in case the pattern isn’t clear, I’ll spell it out at the end.

The first time it was all too much was in college when I had mono. After almost 10 years of chronic pain, I didn’t think any health problems would stop me, but mono did. I took an incomplete in one class. I hated to do it, but I just couldn’t get all of my work done. Luckily, I got mono near the end of the semester, so I was able to finish the other classes. I took that one incomplete, and I made sure to finish the class early the next term. That one was fairly easy.

It was harder in graduate school. After so many years of pain and other problems, I was finally diagnosed as having an autoimmune disease for the first time. My doctor told me to get more rest and to avoid stress, two things that didn’t go well with graduate school. I knew I wasn’t coping well in general (it’s not a good sign when heating up canned soup is too hard,) so I spoke to my advisor. I only had one more term left, and I only needed the equivalent credits of one class. I figured I could manage it if I didn’t work. He agreed to let me leave the part-time job, but pointed out that meant losing my health insurance. I couldn’t swing that, so he pulled some strings. I was doing some research that term and the credits didn’t technically count towards my degree, but he found a way to make it count. Suddenly, instead of leaving the program in 4 months, I was leaving in 6 weeks! I felt like I had failed for the first time. I finished my work, passed the qualifying exam, and left. It all happened so fast. I got the degree, but it didn’t feel right. Still, I knew it was necessary.

A couple years later I was working. This was easier than school, with less stress and shorter hours. Still, it was a strain. I managed ok at the beginning, but after a while I really had trouble. I felt that if I could work less, or at least work from home, that I might be able to manage it better. I spoke to a couple of friends and got their advice. I approached my boss with a plan, asking if I could work from home one day per week, and listing the types of tasks I could do easily at home. He seemed doubtful, but agreed to a 6-week trial. That went well, and I continued it for the rest of my years there. Thank goodness! I didn’t like that I needed the day at home. I didn’t like that I needed special treatment. But boy did I feel better! Occasionally I even needed a second day at home, but I tried not to do that too often. I didn’t socialize as much as my friends did. I was too tired. But I did get out “enough,” so I figured that was ok.

The last time it was all too much was at my last job. This time, working from home wasn’t an option. And unlike before, it wasn’t simply that I was struggling. No, this time I was completely failing. After my showers in the morning, I had to lie down and rest for half an hour before I felt able to get dressed. I found myself resting my head on my desk at work. I started making mistakes in my job that I’d never made before. Every day I’d get home and feel unable to do anything more than eat dinner and watch tv. I stopped going out in the evenings. Eventually, as regular readers know, I left that job and went on disability. It was a very low point for me. I’d always sworn that I’d never let my health stop me from achieving whatever I wanted. But then, I didn’t know that the mono virus had triggered a major autoimmune disease which, after all these years, had finally wrecked my body. I had no choice but to do what my body needed.

So in answer to the question….

So what do you do when you feel like everything is just too much?

…my answer is that I stop trying to do everything. I know it’s tempting to try and push through, to do it all. I try to do that also, at least at first. But when I know I can’t handle it, when it’s just too damn much, then I cut something out, even when it’s something I thought I couldn’t possibly cut. Sometimes it’s job-related, sometimes it’s fun-related, but something has to give. I’m human. We all are. We have limitations. My limitations are not the same as my friends’, or yours, or the person who sits next to me on the train, but we all have limitations nonetheless. Trying to pretend otherwise won’t do us any good and it may do us a whole lot of harm. I don’t like it, but I also can’t change it. Instead, I do what I can to have the best life that I can within those limitations.


From unconsciousness into pain awareness

October 6, 2013

Last night I went to bed thinking about the probable rain we’d get today. I made plans with friends a month ago, and they involved being outdoors today, so I was really hoping it wouldn’t rain.

Normally, I would wake up on a rainy Sunday and immediately enjoy the quiet, the peace, that we only get on rainy

Why must you hurt me, thumb?

Why must you hurt me, thumb?

Sundays in this neighborhood. No cars, no trucks, no shouts. The sound of rain against my bedroom windows. Heaven. Normally I’d enjoy that. Today was different. You’d think I’d have first thought about my ruined plans, but no.

The first thing I noticed was pain. I tried to go back to sleep but couldn’t, which made my brain wake up a bit – why couldn’t I sleep? The pain wasn’t that bad, and I’ve gotten good and sleeping through mild to moderate pain over the past 20+ years. I slowly realized that the pain was in a new place. Huh. That’s not good. I figured that’s why I couldn’t sleep. Every time pain appears someplace new, it takes me some time to learn to ignore it. As I lay there in the dark, I started to realize that this pain was different. Instead of pain in my joints, it was in my thumbs, above the top joints. This was weird. And it wasn’t the usual pain, this was a throbbing pain. And it was both thumbs. I never get symmetrical pain, so this worried me. And suddenly I was a bit more awake.

Cuddled under the blankets, I gave it some thought. What did I know? I knew that I had a new kind of pain, in a new place, and it was symmetrical. I could call my doctor, but I doubt she could do anything by phone. And the office is closed on weekends. Was it worth going to the hospital? Nope. I could wait. If was still a problem tomorrow, then I could call and be seen. But I still doubt they could do anything. How worried should I be? I had no clue. Maybe I should go back to sleep? I tried, but no luck.

And then I noticed that it was raining. It was quiet and peaceful. Oh shit! My plans had to be cancelled!