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.

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Rants | Tagged: | Permalink
Posted by chronicrants

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.

2 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Job, Rants, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

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!

2 Comments | Decisions, Fatigue, Frustration, Isolation, Limitations, Pain, Parking, Rants, Symptoms | Tagged: | Permalink
Posted by chronicrants

Blizzard days are like chronic illness days, so don’t panic

January 27, 2015

If you’ve looked at the news in the U.S. at all in the last day, you know that the northeast is getting hit with a big blizzard. Even though it’s not unheard of around here, this is of course causing the usual panic. For me, it’s just a Tuesday.

snow

Snowstorm January 2005 – 10 years later and people are still panicking

I wanted to pick up a few groceries yesterday because it was time for my weekly shopping. Everyone else in the long lines was stocking up for The Storm. You see, the idea of being indoors for 2 days due to The Storm causes panic for most people. They suddenly need milk and bread with a kind of desperation that isn’t usually seen on a typical Tuesday. I just don’t get it.

Now, obviously for some people there’s good reason to worry. For example,

  1. If you just moved here and you’ve never been in a snowstorm before, you might be unsure of what to expect.
  2. If you’re physically disabled or otherwise in need of medical attention and rely on assistance from others, you might be worried about people not being able to reach you or vice versa.

That’s about it. I can’t come up with #3. Obviously storms like this can be dangerous. Your house could get flooded if you live near the shore, you might be worried about a flood-related fire, a tree could fall on your house or car. But if you live in an area where these things are likely, then you either know how to prepare, or you know you can’t prepare and you just have to wait it out. The other major danger, of course, is shoveling-related injuries, so I hope that anyone at risk for a heart attack, back strain, or other injury is getting help with their shoveling. And yes, you might lose power. But you should already have plenty of blankets, candles, matches, and bottled water in the house anyway, because that’s just good sense.

Look, we’ve had storms like this many times before. So we know that it will end on Wednesday and by Thursday people will be out and about again. By Friday we’ll have forgotten about The Storm as we prepare for the next one. So why buy a month’s worth of groceries when you’ll only be indoors for 2 days?

I suppose most people don’t like feeling stuck at home. I get that. I don’t like it either. But I know how it really works. You see, I get stuck at home for days at a time on a regular basis. It happened last week. And the week before. And the week before that. And it’s ok.

One big difference is that everyone else is stuck at home too, so you’re not the only one canceling plans. The other big difference is that when you’re stuck at home for a blizzard, you feel ok and can do things. When you’re stuck at home for chronic illness, often you feel like shit and can’t do much beyond stare at a tv screen. Thankfully, I feel ok today, so while I watch the snow outside, I’ll do the kinds of things I think everyone should be doing today. Here are a few ideas for you:

  • Clean up the clutter around the house.
  • Cook.
  • Bake.
  • Have some quiet time with your thoughts.
  • Call a friend you haven’t spoken to in a while. If they’re in the same city and they’re not an emergency worker, chances are good that they’re home too.
  • Read that book you’ve been wanting to read.
  • Work on your creative hobbies – knit, paint, write, etc.
  • Play with your kids and pets (I would if I had any.)
  • Watch a movie.
  • Daydream.
  • Exercise. I’ll do my physical therapy, but you can also do plenty of at-home exercises like lifting weights, sit-ups, push-ups, jumping rope.
  • Finally empty out that email inbox.
  • Take a hot relaxing bubble bath (it’s not my thing, but it might be yours.)
  • Do all of those other things around the house that you say you never have time for.
  • Be incredibly grateful that you’re indoors today and safe.

I do some of these things when my illnesses keep me at home, but many I can’t do. Today is sort of a treat – I’m home *and* I feel somewhat ok!

So the next time you hear someone panicking that The Storm is coming, remember that being stuck at home for a day or two is something many of us go through on a regular basis, and suggest that they relax and enjoy the time at home. And point out that they might want to keep a few bottles of water in a closet all the time, because standing in those long lines is just silly.

2 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

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