Making the rest of the world wait

December 11, 2013

The past week has been really stressful, both emotionally and physically. That’s why I’m typing this at 1pm in my pajamas. I’m not talking about the clothes I wear to lounge around the apartment, but the ones I slept in last night. I have not showered or brushed my teeth. I have no had lunch. I have not gone grocery shopping, visited my grandfather, or run the errands that I planned to run today. And I won’t.

Some things can’t wait. That’s true. I have to pick up a prescription at the pharmacy. It doesn’t have to happen today, but it can’t wait forever. Maybe you have to get to the mailbox with your rent check or cook a meal. But there are so many things that we think must happen today and the truth is that the world won’t care if we put them off for a few days. For me, those things are the ones I just listed. Yes, I want to do all of those things. Sooner or later they all have to happen. I planned to do them today, but waiting is ok, too.

I’m putting my health first. I feel lousy. I spent all day yesterday at home and resting. That helped a lot! I had hoped that one day would be enough, but it wasn’t. And that’s ok. I mean, I’m not happy about it and it sucks, but it’s ok. It’s not the end of the world. It’s not the end of my world. I will spend another day at home, resting. If I have to cancel tomorrow’s plans to rest more or to do today’s errands, then so be it.

I’m putting my health first, and I know that’s the right decision. Everything else can wait. No one will mind and in the grand scheme of things, it just won’t matter.


How chronic illness affects my geographical living choices

December 4, 2013

Last year I thought I might not be getting disability payments, and I was looking at cheaper places to live (in case I did get social security payments and could maybe avoid moving in with my parents.) It was the first time I realized just how limited

Boston Public Garden with part of the Boston skyline

Boston Public Garden with part of the Boston skyline

I was, but not for the expected reasons.

I know that some of my living choices will be made based on climate – if I have a choice, that is. Several years ago I considered moving out of state. That plan was squashed when I got sick and needed to stay near my support network, etc. Still, I remember looking for a place that got decent sunshine in the winter, so my seasonal affective disorder wouldn’t be triggered too much. I also wanted a place that didn’t get hot or humid in the summer, since that makes me incredibly ill. It’s hard to find someplace that meets all of those needs, aside from southern California which I’d already tried. I wasn’t thrilled to have to base a lot of my choice on my how my body reacts to different climates, but that’s just how my life is, and I accept it.

But the other geographical limitation is one I don’t accept. Actually, it really pisses me off. I live in the Boston area, which is unfortunately one of the most expensive parts of the country. Social security doesn’t correlate with cost of living, and so my payments just wouldn’t be enough to stay in the same area. That’s why when I worried about money last year, I considered moving a bit farther away from the city. That’s why I’ve been looking this week at what my options for the future might be. I didn’t, and don’t, want to switch doctors or be too far from my family and friends, but I figured I could manage 45 minutes to an hour. The cheapest places north of the city were in New Hampshire. There were some decent ones to the west. The best to the south were in Rhode Island. And east is the ocean, so that’s out. Most of the decent choice were in New Hampshire or Rhode Island, and I think I could be happy in either place. But even though they were closer to my current spot than many other parts of Massachusetts, I couldn’t move there because of health insurance!!! Yup, my health insurance would be a problem.

Back then, and possibly again in the future, I was on MassHealth. That’s our state medicaid. I was very grateful for this. The thing is, I have to be living in MA in order to be eligible for it. If I moved, I wouldn’t be eligible anymore. Maybe I’d be eligible for another state’s medicaid, but then I wouldn’t be able to see my doctors in MA. It wouldn’t matter if they were 5 minutes or 5 hours away, if they were in another state, insurance wouldn’t cover them. I’d be allowed to pay out of pocket, of course, but that would defeat the entire purpose of moving far away to save money on rent and other expenses.

This really pisses me off. There’s been a lot of talk by politicians about letting health insurance cross state lines, but nothing at all has come of it. Plus, they’re only talking about private health insurance. What about medicaid? I’m sure there aren’t a ton of people affected by this, but I can’t be the only one. There must be so many people who live near state borders and who would rather see a doctor in the other state, if only their health insurance would pay for it.

Medicaid is there to make sure people who need it can get good healthcare without going broke, essentially. Well, what if the good healthcare is across the state line? Then what?

Listen up politicians: We Deserve Better!


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.


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.