Picturing my potential future

November 29, 2013

When you deal with major life illness, quite a number of unexpected things could happen. I’m going to focus on one in particular.

First, something expected happened when I had to leave work on disability: I gained a new perspective on life. I changed my mind about what I thought was important. A lot of people talk about that happening. Even healthy people expect that to happen to anyone dealing with a big illness. But then something unexpected happened, too: I had a lot of time to think. It makes sense to me now, but I hadn’t considered it before. Back when I was unemployed because I quit my job, I was busier than ever. I volunteered, did housework, met up with friends for lunch, exercised regularly, spent time looking for a new job, caught up on random life stuff (you know the constant “to do” list.) But this is different. I can’t go out much. I spend a lot of time at home and alone. At the beginning my brain was foggy and my memory was lousy so that I couldn’t do much reading or serious thinking. But thankfully those symptoms have improved. Now I read a lot of personal development books and blogs and I take the time to really think about them. After all, what else am I able to do?

I’ve been trying to stay positive and believe that I will get better at some point. The new treatment has helped a bit, and I’ll probably change the dose or try a different version soon. I really do think something will help. I know that I’ll never be truly “healthy.” There’s just been too much damage to my body. Still, I could be well enough to work, date, and socialize more. And when I think about that life, now I have a pretty good idea of what I do and don’t want it to include.

I don’t want to work too much or spend too much time doing boring chores and errands. Yes, the laundry has to be done and meals have to be cooked, but that needs to be balanced out with more fun things. I want to spend a lot of time in nature. I want to be around people I who make me happy and vice versa. I want to save my money so that I can quit working as soon as possible. Mostly, I want a simple life. I want to get rid of the clutter around my apartment (I’m working on that now, bit by bit.) I want to be present in the moment. I want to keep my to do list free of unnecessary things. I want to cross things off my to do list each day without stress, to just do them without procrastinating and then move on. I want to exercise regularly. I want to keep my health at the forefront by eating right, exercising often, and taking care of myself in general.

It’s so easy to imagine this life. I’m sure it will be harder to carry it out, but I sure plan to try! I imagine going to bed at a decent hour and waking up after 8 or 9 hours of sleep. I work efficiently at my own business for the first few hours of the day. (I think I will have to have my own business so I can have flexible hours and can work from home to accommodate my health issues.) I will take a nice walk, then eat lunch. Then I’ll work a bit more. I’ll stop working in the middle of the afternoon (I’m working on a plan to do the job part-time) and then use the rest of the afternoon to buy groceries, cook meals, do laundry, exercise more, etc. I will have the evenings free for dating, socializing, etc. My weekends will be free for that also. I will do as many chores and errands as I can during the week so that they don’t overrun my weekends. I will avoid shopping unless it’s completely necessary. I won’t buy anything unless I truly need it. I will get rid of anything in my home that I don’t really need. I will get rid of my car if I get healthy enough (I live on public transportation, so I only keep my car because some days I’m unable to walk to the bus or train.) I will spend most of my time enjoying nature and being with friends. I’ll save up the money I don’t spend so that I can retire young. After I retire, I’ll be able to volunteer more. I may even start a nonprofit. I’ve had an idea for a nonprofit floating around in my head for a while now, but I’m not healthy enough to manage it yet. If I feel able to, I’ll travel. There is so much in this world that I want to see and I’d be grateful to see even a small part of it.

Ok, I know this sounds a bit idealistic. And maybe it is. But I think I can do it, at least mostly. Sure, there will be stressful days. There will be days that I flip my priorities on their heads. That’s ok. It’s ok as long as most days are the way I just described. It will take effort and patience, but I’ll do it because I think it will be worth it.

So that’s the potential future that I’m picturing for myself. I don’t know if I will ever have the opportunity to try it, but I’m sure as hell going to keep working towards that goal!

Side note: If you like the idea of simplicity, try starting here: bemorewithless.com  This is my favorite simplicity blog at the moment.

How the other side lives: others’ medical appointments

November 27, 2013

I’ve been going to other people’s medical appointments lately. Well, I’ve really only been going to appointments for two. The first is my father. He needs someone more experienced to ask the right questions. The second is a friend who just had a baby. I just hold the baby in the waiting room while my friend has her checkup or whatever.

It’s interesting to see how the other side lives. My father has only recently had any health problems, and my friend has had almost none. Yes, I’ve gained some insight into their lives and into what it must be like to have a straightforward appointment with no medical mysteries, something I haven’t experienced since I was a pre-teen. What I find more interesting, though, is the reminder of why “healthy” people find it so hard to understand what we go through.

It starts before the appointment. There’s no major prep. There’s no gathering of pill bottles, lists of questions, or compiling of medical records. There’s no anxiety. There’s no worry.

Then there’s the day of the appointment. It’s no big deal to them. It’s just another item on another day, like doing laundry or buying groceries (which are also no big deal to them, unlike to me.) The appointment itself is straightforward. It’s treated like meeting with a plumber to get your pipes fixed – they ask questions, get answers, and go on with their day. There’s also more trust in the medical establishment. They don’t worry about tests not being covered by insurance, doctors not providing the right diagnosis, or any of the rest I worry about. And there’s so much trust in general! They don’t edit what they tell doctors, worried about being considered a hypochondriac. They don’t worry about being disbelieved. They state any problems and move on.

As if that wasn’t enough, there’s the followup, or lack thereof. After most of my medical appointments, there’s a parent or friend wanting to know every detail. Well ok, with my father’s current issues, we’ve been having followup calls with my mother. She wants to be there, but since she works and I don’t, and to be honest I have more experience with doctors, I’ve been going to the appointments. But for my friend, when it’s done, it’s done. I’m sure she updates her husband when they both get home at the end of the day, but that’s it. There’s no rush, no concern, no potentially life-changing news to impart.

Part of me is jealous, but mostly I’m amazed. I had forgotten that it could be like that. It’s a good reminder of why my friends don’t understand all of the crap I deal with aside from how I actually feel. They have no clue about the insurance nightmares, the anxiety, the stigma, or the huge amounts of time involved. It’s completely foreign to them. I might as well move to Kenya and expect them to automatically understand my life there.

I’ll try to remember this the next time I get a blank stare as I explain that even though I don’t work, taking care of my health is more than a full time job. Or better yet, maybe I should get them to come to an appointment with me!

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.

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.

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