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.

9 Comments | Decisions, Expectations, Frustration, Job, Limitations, Unpredictable | Permalink
Posted by chronicrants

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

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

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.

10 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Job, Limitations, Milestones, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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