6 great things about not working

February 25, 2015

Lately I’ve been thinking a lot about how much I wish I could work.* I want to get off benefits and be independent. I want to be able to buy a new sweater. I want to move to a new apartment and afford the neighborhood I like.

Those desires are all well and good, but they don’t change the reality. The reality is that I’m not ready to work yet. The 2015-01-28 08.31.11reality is that when I do return to work, it will probably be for about 5 hours per week at a low wage. I still won’t be able to afford my current expenses, never mind adding any to the list. And I can’t change that right now.

So as long as I can’t work anyway, I might as well focus on the good things about not working. Here are just a few:

  1. No commute! Not having to deal with traffic and/or crowded trains is fantastic at any time of year, but Boston has been buried under snow recently. Streets are narrow, parking is impossible, trains are breaking down, and commuters are miserable. Then there’s the ridiculous amount of time spent commuting each week. I’m glad to avoid that mess!
  2. Avoiding crowds and long lines! When I worked, it was always at a 9-5 kind of job. That means I did errands when most people did them: in the evenings and on the weekends. Since I’m not working, I make sure to only do errands on weekdays, and it’s great! There’s little traffic and few lines. Things like grocery shopping are so much easier when the roads and stores are mostly empty!
  3. Lounging in bed! Sometimes I have plans of some sort, but most mornings I have nowhere to be. I wake up to an alarm to keep myself on a certain sleep schedule, but then I lay around reading until I feel like getting up. This morning I spent 1/2 hour in bed fantasizing about what I’d do if I won the lottery. Because why not? I get up when I feel like it and not a moment before.
  4. No bad bosses! I’ve had my fair share of lousy bosses over the years. There was one good boss, and I loved that job. The others were horrible. It’s easy to forget about those crappy bosses sometimes, but when friends complain about their bosses, I remember how miserable it was. And I’m thrilled that I don’t have to do deal with their bullshit anymore!
  5. Skipping lousy weather! Sure, sometimes I’m seeing a friend or going to the doctor, but most days I have a lot of flexibility in whether or not I leave the house, or I can change things. I watch friends complain about going to work in downpours, blizzards, blistering heat, and arctic cold, while I enjoy my cozy apartment. If I have plans with friends and we see bad weather in the forecast, we just move things to a different day. Easy! I rarely go out in bad weather if I don’t want to.
  6. My time is mine! I remember those bullshit meetings where we all sat around talking and nothing useful got done. I remember sitting at my desk with nothing to do, but not being allowed to leave. I remember having to schedule time to use the bathroom. I remember getting chewed out for being 5 minutes coming back from my lunch break. And I don’t miss any of it. Now I spend my time how I want to. Ok, I can’t always do the things I want to do, but at least those limitations are set by my body (or some other reasonable source) and not by some boss or company. I do what I want to do when I want to do it and I don’t need to get permission from anyone. I feel free!

I can think of so many other great things** about not working, but these are definitely some of the best. When I think about these, I’m glad not to be going in to an office every day. Sure, a salary would be nice, but since I don’t have that option, these reminders sure help to lessen the sting!

What about you? What are some things you don’t miss at all about working at a job? Let’s get a list going in the comments!

*Note: When I talk about “work” I mean at a paid job. Obviously we all work a lot on maintaining our health, managing our households, navigating doctors and insurance companies, and so much more. Unfortunately, we don’t get paid for that kind of work.

**Note 2: I intentionally didn’t mention how great it is to have the time and flexibility to take care of my health. I think that for a lot of us, that’s a given. Trying to get time off for doctor appointments, ducking out of meetings to take medications, not being able to each the provided food at a lunch meeting and all the rest was frustrating, stressful, and detrimental to my own self-care. I could write an entire post just on that. Maybe one of these days I will. For now, I decided not to get distracted with this, but feel free to mention it in the comments if it’s what comes to mind for you!


My improved health: how I got here

February 16, 2015

A friend recently asked me what has helped me the most. I’ve thought about that vaguely from time to time, but this time I really considered what got me to where I am.

Three years ago I had left my job hoping to go back soon, and instead I found myself feeling steadily worse. I was house bound 3-5 days per week, on average. An afternoon with a friend would leave me barely functioning that evening and all of the next day. My memory was lousy, I was nauseated all the time, the fatigue was debilitating, and the pain was getting even worse.

Now, I only spend 1-2 days at home each week, and when I go out, it’s for longer stretches of time. I do more each day. When I’m home, I don’t feel as bad. The GI symptoms are almost entirely gone, the pain is mostly stable and an acceptable (for me) level, my memory is better (but not great yet), the fatigue has improved so much, and I can recover from an afternoon out pretty quickly. It feels like a miracle! But it wasn’t a miracle, it was a lot of hard work and a bit of luck.

I think what helped me was a bit of an insurance doctor, a lot of my naturopath, and a huge amount of me.

The doctor that the disability insurance company made me see encouraged me to see a sleep doctor. I had been thinking about it, but he nudged me more in that direction. I did sleep studies and started using a cpap machine, and it made a huge difference. For the first time in ages I was waking up feeling slightly better than I had when I went to sleep!

My naturopath did a lot for me. I was already gluten free, but she got me off dairy and helped me figure out the other foods I should avoid. She got me on various supplements that have been helpful (and some that weren’t, but that’s ok – it’s all trial and error, right?) She got my vitamin D levels up, improved my zinc levels, and found a multivitamin that didn’t make me feel ill (something have had problems with for many years.) She tested my adrenals and got me on supplements to help them. She guided me through every step of the process.

The luck was that I had medical conditions that could be improved. Not everyone is so fortunate, and I am grateful every single day that I had options, even thought I had to work incredibly hard to find them.

And then there’s me. When I was barely functioning 3 years ago, and the doctors were all telling me there was nothing they could do, I decided to at least learn a bit more about my situation. I picked up a book at the library, and that led to more books, blogs, and online support groups. Reading was slow thanks to the brain fog and fatigue, but I eventually learned that my hypothyroid treatment wasn’t the only option, despite what my doctor had said. I did more research. I learned which kinds of doctors I should see. I made many phone calls. I learned about naturopathy and researched naturopaths, eventually choosing the one that I see now. I went on a gluten-free diet. Later, I stuck to the more restrictive diet that my naturopath recommended. It wasn’t easy, but I did it. More recently, I cut out all trace amounts of gluten, like from lotions and from kissing someone who’s eaten gluten. Again, it isn’t easy, but I’m doing it. I’ve swallowed more pills per day than I’d like to think about. I’ve stressed about the financial cost of it all. I’ve fought with insurance companies and with doctors. When a doctor I’d waited months to see was unexpectedly out of the office and I was given a substitute (who was useless, by the way) I complained to the head of the office and got an immediate appointment with the doctor I wanted (who was incredible!) I pushed myself to do more than I wanted to do. When a doctor didn’t want to give me the hypothyroid treatment I wanted, I found someone new (and the treatment change was a good move!) I found a new podiatrist when I felt my orthodics weren’t right, I restarted physical thearpy, and I learned about trigger points. As I felt better, I moved on to new lines of research. I followed up every lead from books I read and from patients I spoke to. I like to knit, and sometimes, as you’re knitting along, pulling at the yarn, you’ll encounter a knot, and it’s hard to untangle it. I’ve been untangling the knot of my health conditions for the last few years.

The main thing I did was I ignored all of the naysayers. The doctors told me I couldn’t get any better. Friends and family thought I should stick with “traditional” medicine. But I stuck at it. I didn’t do anything that didn’t seem to have some solid research behind it. I listened to patient experience, but I didn’t follow up on anything unless multiple people had had good results, and then I was still careful. And all along, I knew it might be for nothing. I knew the doctors might be right and I might not get any better, but I held out a glimmer of hope, too.

I won’t pretend I’m perfectly healthy now. Or that I ever will be. I know that my health conditions are permanent. The best I can hope for is to go into remission, and even that is a long shot. But I’m trying.

Because I could have given up. I could have accepted what the doctors told me. I would now be bedridden, with no hope of any improvement. That could still happen some day. I know that. But I’m focusing on one thing: today is not that day.

I’m not suggesting that my story is one that can be replicated. I’m not trying to be inspirational or any of that other bullshit. I’m not pushing anyone to do what I did if they don’t want to. I’m simply trying to answer the question I hear over and over from friends and from readers: “How did you manage to improve?” I’ll gladly give more details if anyone wants them, but for now I’ll just say, it was a bit of luck, a fair amount of searching for the right medical providers, and a whole lot of effort by me.


Why wouldn’t anyone want to date me?

February 14, 2015

I had an epiphany recently, and I have an ex-boyfriend to thank for that. Oddly enough, it was when he dumped me that I finally found confidence in dating.

Two years ago I wrote a post titled “Why would anyone want to date me?” and it was just what it sounds like. Now that I’ve had my epiphany, it’s painful to go back and read that. My mindset has changed, and I hope it never goes back.

I thought I’d struck paydirt with a guy who seemed ok with my health issues. In the end, though, he was overwhelmed. So you’d think that would have reinforced my fears that I’d never find someone who could handle my health problems. Instead, it was the opposite. When he dumped me, I asked why, and every time he listed a reason, I realized that really, I was too good for him. He was mainly concerned that I couldn’t “keep up with his lifestyle.” The funny thing was, I’d been worried that he couldn’t keep up with mine! While he was worried I couldn’t keep up physically, I was worried he couldn’t keep up socially, since he spent his free time alone at home, and I love being around people and doing things. I’m an introvert, so I love quiet time at home, but I also like to get out and do things either alone or with other people, whenever I feel up to it. Every single thing we did out of the house was planned by me. All he ever suggested was staying in and watching movies.

He also didn’t have many interests. Sure, he had less free time, since he was busy with his job and his kids, who he has part time. But I was busy taking care of my health, also a full time job. And I read books, both fiction and nonfiction, on a wide range of topics. I write multiple blogs. I’m working on several big projects. I do crafts. I follow local, national, and international news. I do consulting work when I feel up to it, more for fun than for money. I volunteer. I have many close friends who I spend time with. I am very much involved with multiple social groups. I’m interesting, damn it! I’m a catch!

There were more things about that relationship, but you’re probably getting the point. When he dumped me, I had to admit to myself that I was trying very hard to overlook my own concerns, mostly because I felt I should “settle” for anyone who treated me well and would have me. And when he started listing his concerns I had to admit to myself that I had many of my own. And when I really thought about his concerns and mine, and which were valid and which weren’t, I realized that I actually had a whole lot to offer someone. Maybe this guy wasn’t the right person, but someone else out there will be.

Obviously dating will still be harder because of my health issues. I don’t get out much, so it’s hard to meet people. Dating takes more energy than I have some days. And I need people to see past my health problems, to who I really am, so they can see that I’m more than just a “burden”. We’re all more than our health issues.

I won’t assume that the next person will see what a great catch I am. Maybe they will and maybe they won’t. The point is that I see it. I’m going to try to keep seeing it. When my confidence slips, I’m going to come here and read this post over and over again. I’m going to completely ignore that old one from a couple years ago. I’m not going to feel “unworthy” just because I have some health issues. Ok, they’re real problems, I’m not denying that.

But I’m also funny and smart and interesting and caring, and so what are some life-long health conditions compared to all of that?


When friends and weather don’t accommodate the good days

February 13, 2015

There are good days and there are bad days. We all know that. Sometimes there are good weeks and bad weeks. I have good seasons and bad seasons. I’ll have good days in the bad seasons and bad days in the good seasons, but mostly I feel 2015-02-10 15.16.52good in fall and winter and horrible in spring and summer. It’s just the way it is.

That means that when my friends are all picnicking in parks, swimming at beaches, and throwing frisbees in fields, I’m at home feeling miserable. And when everyone hibernates in the winter, I feel much better and can finally go out. It sucks.

Still, I usually make the most of it. I convince people to go out in the winter, and I spend my time with the people who don’t mind so much. I also go to friends’ houses more, instead of making them come to mine like I do in the summer.

But that’s in a typical winter, and this winter is anything but typical. Three weeks ago I wrote about how silly people were acting as a storm approached. This is Boston. We get snow. We can’t panic every time.

Well, that was three weeks ago. Then the next week we got another huge storm. 2015-02-11 10.43.46And another the week after that. And another is due tomorrow. We’ve gotten more snow in the last few weeks than we usually get in an entire winter! The subway keeps shutting down, buses are running late, cars are buried (see that photo on the right? How many cars do you think are parked there? It’s more than 1….), sidewalks are narrow, curbcuts are blocked, intersections are dangerous as drivers can’t see around the mounds of snow, and for many people (including at least 3 of my friends) roofs are leaking. It’s a mess out there!

This means that 2 things are happening:

1) Plans keep getting canceled on the days of storms. I was looking forward to a singles party tomorrow night (Valentine’s Day) but that got rescheduled, and a brunch Sunday morning was canceled.

2) On non-storm days people just don’t want to go out, or can’t. My chronic pain support group usually has 15-20 2015-02-10 15.48.58people. Sometimes there are more or less, but it’s rare to have fewer than a dozen people there. Today there were 6. SIX!

Even my able-bodied friends find it difficult to get around these days. It’s just such a mess out there. Wait, I might have said that already.

So while I’m finally feeling pretty decent, able to walk around and get outside and do things, I find myself trapped at home, or unable to walk down slippery sidewalks, or not able to move my car, and there are very few people to spend time with.

They’re all looking forward to summer.

I’m just wishing for a milder winter.


Feeling figuratively itchy

February 8, 2015

I have this itch I can’t scratch and it’s driving me up the wall. It’s a desire to do something!

How do you spend your days? Think about it. Now ask yourself, could you be doing more?

For a long time, my answer to that last question was no. I was doing all I could. Well, I was doing enough, anyway. I was working, socializing, volunteering. I was sick and trying to take care of myself. I was spending hours dealing with lawyers, insurance companies, and benefits. I was seeing many doctors. I was doing combinations of these. But now, suddenly, I’m not doing any of them Well ok, I’m still seeing doctors, but not as often.

The insurance nightmare is over. I’ve received all of the benefits I’m eligible for. My health is stable enough. I have some more research to do and some more treatments to try, but they’re on hold as I adjust some of my current meds. On top of all of that, miraculously, I’m feeling better! I’m able to do more each day than I could a year ago. I still need to rest, but usually for only a day or two at a time, which is a big improvement. Sometimes just half a day of rest is enough. I have more time. And when I’m being productive, I’m able to think more clearly. My memory still has gaps, but they’ve shrunk a bit. For the first time in a long time, I feel like I have the potential to do more!

So you may be wondering what my problem is. Well, it’s simple: I feel like I have potential, but I’m not confident that I really do. And if I do something to earn money, and I lose benefits, it would somewhat defeat the purpose of working.

I mentioned the other day that I want to get a new apartment. I’ve been looking at apartments and each time I do, I’m completely exhausted and need to rest the next day. This is a physically and emotionally tiring process, but it’s short term. In a few months, hopefully, I’ll be mostly unpacked in my new home. Still, if this is so exhausting, then can I really manage even a part time job? I don’t want my health to backslide. I also don’t want to lose my new-found ability to take care of myself properly, lose my ability to socialize, or lose this feeling of actually feeling ok a lot of the time.

Another other thing that’s on my mind when I look at apartments is the cost. Right now, I’m pulling money out of savings every month. That’s ok for a while, but at some point I’ll run out of savings. My social security payments can cover my rent or all of my other expenses. (Yes, my rent is almost exactly half of my total monthly expenses.) So any rent will be too much. Still, I’m trying to find something slightly cheaper than my current place, which isn’t easy to do around here. At the end of the day, I know I need to earn some money to go towards my rent. Let’s say I can manage to earn $1000 per month eventually. That’s not enough for me to lose my social security, but I’m guessing I’d lose my food stamps and fuel assistance. Once I account for the loss of those other benefits, it would be like I was only earning $750. So I’d be putting in $1000 worth of effort and time to only getting $750 in return. That’s hard to swallow. I need to figure out a way to earn that $1000 with as little time and effort as possible to make it worth it. And then I still wouldn’t be breaking even, either. But I’d be closer.

I want so badly to do something useful. And I know I need to get paid for it. I also know I need to wait. I need to wait until I’ve figured out the financial angle and until I know my health is stable enough. So I’ll wait. I wouldn’t want to try any sort of work until after I move anyway. But still, there’s this feeling, this need, to do something. Because it’s been a long time since I’ve had that option. And deep inside, I have the fear that this almost-ability won’t last long, so I better seize the chance while I can.

But I need to wait.

Hence the itch.


What a difference a parking spot can make

February 6, 2015

I should be out doing things today. I should at least be doing things around my apartment. Instead, it’s noon, I’m in my pajamas, and I’m having trouble finding the energy to do anything remotely useful. Why? Because of parking problems.2015-01-28 08.31.11

Parking is a problem in a lot of cities. It’s so inconvenient that I briefly considered going car-less a few years ago, but the reality is that there were just too many days, even when I was healthier, that I could walk to public transportation. So I kept my car. Which means I always need a place to put my car.

Boston has gotten a lot of snow recently – about 40″ in the last two weeks. And we’re do for another foot or two in the next few days. In a city of narrow roads, this greatly restricts parking. My neighborhood has parking on both sides of the street normally, but right now there’s only enough room to park on one side. That means that every time I drive, I worry about giving up my parking space.

Two days ago, I came home tired, then spent 1/2 hour looking for a parking space. By the time I got to my apartment I was too tired to cook dinner.

Yesterday I decided to take the bus instead of giving up my parking space. I took the bus, walked, walked more, took the bus, and took another bus. I was exhausted. I did everything I needed to while I was out, but it was tiring. Then I waited for the last bus for 30 minutes in wind chill temperatures around 10F. That didn’t help. Again, by the time I got home I was too tired to cook dinner.

Today I’m resting. If I had driven yesterday, I’d probably have the energy to do the few things I’d like to do today. I could go to the post office, cook, and generally feel decent. Instead, I feel lousy. And why? Because I didn’t want to give up my parking space.

I’ve thought about moving several times over the years, but this may be the last straw. It may be time to move now. I’ve tried to put up with the parking stresses, but last week I didn’t go out because of it, and that wasn’t good for my emotion health. This week I did go out and it wasn’t good for my physical health. Shouldn’t I live someplace where I can go out when I need to and come home when I need to? (By the way, parking can be tough even when there’s no snow on the ground. The snow just makes it that much harder.)

So I’m looking for a new apartment. In fact, that’s what I was doing when I took the bus yesterday. I’ve seen a couple places that are close to what I want, but not quite. I’m still looking. It’s a tough market, so please wish me luck!

And hopefully, by next winter, I will have an apartment with my very own, off street parking space. Oh, what a luxury that would be!


The little stuff can still get to me

January 31, 2015

Sometimes I’m really calm in the face of annoying problems. I deal with big picture, major issues on a daily basis, so the little stuff just isn’t worth stressing over. Like the new pain I’ve been having recently. It’s been easy to stay calm IMG_20150131_111719over that. But every now and then something gets to me. And today it’s my broken wifi router.

When my router broke last month I was annoying. It was inconvenient. But it’s not like I could do anything about it. And anyway, those things usually only last 2-3 years, and mine was 5 or 6 years old already, so I couldn’t ask for more, right? I threw it out, ordered a new one online, and 2 days later I was plugged in again.

Then today I woke up to a broken router. What the….??? So now I have my computer plugged into the internet. It works. But my phone can’t access wifi, and neither can my TiVo. So I need to avoid using data on my phone, and I can be online or watch tv, but not both. It’s not horrible. It’s truly a first world problem. But it’s getting to me. The router is new, so it’s an avoidable problem, and that irritates me.

Pain and fatigue, not being able to earn a living, relying on others for help with everyday tasks…. it all puts life in perspective. It makes the small stuff matter less. But it doesn’t make us all immune to the small irritations in life. For me, internet access is often my one link to the outside world when I can’t leave the house. TV is my entertainment when I’m too tired to go out, read, or even talk on the phone. I need these things. And I’m pissed they’ve been temporarily taken away.

So please excuse me while I go figure out the router company’s return policy…..

Does the small stuff get to you? What kinds of things get you riled up?


%d bloggers like this: