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?

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.

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.


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.

When I’m sick after all

November 6, 2013

The thing about having a chronic illness is that I often feel like I have the flu or something like it. It sucks, but I can’t do much about, so I accept it. And I think that acceptance really affects how I handle having something that isn’t part of my chronic illness.

I used to get a sore throat, the chills, and fatigue, and assume I had a bug. It took me many years to figure out that those symptoms had more to do with my thyroid than with a virus, so even though I felt lousy, I didn’t have to worry about being contagious. Unfortunately, that attitude led me in the wrong direction last week. I had what I thought was an especially bad IBS attack for the first time in a long time. It didn’t resolve as quickly as usual, so I starting thinking that maybe I was having a bad response to my new thyroid med. Uh oh! I decided to wait a few days to see what happened. In the meantime I went on with my life. It never occurred to me that I had a bug.

Three days later I was having a really rough time. It was late at night, and I felt truly dreadful. I decided that enough time had passed and in the morning I called my naturopath. That’s when I got the news: I had the exact same symptoms as many of her other patients. There’s a stomach bug going around, it lasts about a week, and I had it. I needed to spend several days at home, resting and not eating. Oh crap!

I immediately thought about the unusually high number of “vulnerable” people I’d been around over the last several days. This was unusual, even for me. I was with my friends and their 4-year-old. I spent time with my 90+ grandfather. I waited with a friend who was in labor, while her husband rushed to get there. I visited with a friend who was recovering from knee surgery. *(&$#^#!!!

I couldn’t do anything about the past. I just hoped no one I had been with got this bug! (Update: So far, go good. No one I was with has reported symptoms, so I don’t think they caught it from me. Yay!) I was so used to not being contagious when I felt lousy that I went on with my life. A “healthy” person would have probably known immediately that something was wrong, and they would have stayed home while feeling crappy. I hadn’t done things ideally in the past few days. But looking to the future, I had the advantage.

Yes, I was disappointed to cancel my plans for the next few days. There was a lot I was looking forward to, but I’m also used to canceling. I didn’t get upset over it. I didn’t even look at my “to do” list. I knew there was nothing on there that couldn’t wait until I was better. Sure enough, a car issue, a cell phone issue, balancing my bank accounts, cleaning up the apartment, writing to my doctor to correct mistakes in my medical record (that’s a whole story in itself!), getting my orthodics adjusted, buying new glasses, getting my friend a baby gift, and taking out the trash, among so many other things, still need to get done now that I’m feeling better. And you know what? Waiting a few days to do them didn’t hurt anyone or anything. In the old days, I would have tried to do some of that while I was sick, or I would have at least worried about it all needing to get done. Now I know better.

Resting is sort of a skill. It can be hard to rest if you don’t have the tools. After years of chronic illness, though, I’m an expert in this area. I have the mindset. I knew I had to take it easy, so I did. I didn’t try to push myself to do more than I should. No problem there. I also have everything I need. I had plain rice in a cabinet and I quickly made some. I pulled ginger root out of the freezer and grated it into hot water. I had apple juice in a cabinet. I put on cozy, comfy clothes that I keep specifically for lounging around the house. I pulled out some relaxing knitting and crochet projects. I had plenty to watch on the dvr and, in case that got boring or not relaxing enough, I had a stack of feel-good moves on my bookshelf. I had an interesting, fun book from the library. To top it all off, I had the large, soft, oversize throw blanket that I cuddled up in for the better part of each day. Yup, no one knows how to relax like someone who’s forced to do it constantly.

So did it suck having to slow down, cancel stuff, and stay indoors on sunny days (especially knowing the lousy weather that’s headed our way)? Yup. But I’ve done it before and I know I’ll have to do it again, so I didn’t let it get to me. I’m just glad that it’s over now, and I can started to get things together again. I have writing to catch up on here, lots of laundry to wash, and that whole “to do” list to catch up on. But at least I’m no longer doubled over with nausea. I guess it’s all relative.

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