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

The new meaning of “Can I afford that?” when you live on SSDI

January 23, 2015

A friend just emailed me about a good deal on something I’d like to buy. But can I afford the $72 for 20120809_220808something that I don’t really need? Yes and no.

I’m one of the lucky ones. I was raised in a middle class family. When I was born my parents started a college fund, and I graduated from school without any debt. Actually, I had money in the bank because I’d learned to save what I earned from my various jobs. I was taught to never spend more than you had. Credit cards were to be paid off in full every month. I worked all through graduate school and never paid a dime in tuition. I had plenty of problems in life, but I never had debt. I feel so fortunate for that, I am so thankful for the good money lessons my parents taught me.

So when I had to leave my job due to disability, I had savings. Many people don’t. And I managed to get SSDI. Many people don’t. I am so grateful for all of that.

But for the first time in my life, money began to stress me out when I left my job. From the time I started babysitting at age 12, I’d always worked. I’d always had a way to earn money. Sometimes I worked part time, sometimes only on school vacations, but I always worked. Several years back I quit a job where I was unhappy and it was my first real break, but I had planned for it, I had savings, and I was highly employable, so I knew that I could get a job whenever I wanted and needed it. After some time off, I went back to work. I never earned a high salary, but I was frugal and I saved.

When I became too sick to work, though, it was all different. Not having the option of going back to work was stressful. There would be no way to replenish what I spent. That savings account is a huge comfort, but it won’t last forever. And then what?

SSDI is helpful, but it’s not enough. It almost covers my rent. Almost. I have food stamps that almost pay for my groceries. Almost. The extra rent and grocery costs are about $100 every month out of my savings account. Every single purchase beyond my rent comes out of my savings account. Electricity, gas for cooking, car insurance, gas for the car, phone, internet, very limited entertainment, and occasional clothing all come out of my savings account. And medical expenses. Oh, the medical expenses.

Each time I consider if I can afford something, I know that technically I can. Technically I have the money sitting in my savings account. But I also see those savings going down every month. I don’t know if I’ll ever be able to earn more than I spend. So should I save that $72 for the future? And what about the present? There are doctors and medical tests that I think might help but that I’m putting off because they aren’t covered by insurance. Of course, those are hundreds or thousands of dollars, not just $72, but it’s the same idea. If I’m not pulling money out of savings for those doctors and tests, should I really do it for something more frivolous? And if I really wanted to pull money out of savings for something fun, I’d get a pet. But I can’t pull money out for those big things, so getting something little might be fun and comforting. Or I could spend even less and get something else I’d really like, like a new sweater. My clothes are all old and out of style and starting to get threadbare. But even if it was only $30, I would still have to take that money out of savings. And that brings me back to the start of my reasoning: technically I can afford it, but I probably shouldn’t.

Each little “just this once” adds up. $72 here, $15 there, and my savings account keeps shrinking. I’m so grateful to have that account. I want to make it last as long as possible.

Then again, maybe I’ll just take $1 out of savings and go buy a lottery ticket. Then maybe I could afford it all.

2 Comments | Decisions, Expectations, Frustration, Job, Limitations, Rants | Tagged: , | Permalink
Posted by chronicrants

What a difference a year can make

December 30, 2014

As I made plans for New Year’s Eve this week, I suddenly remembered last year. The difference is startling.

Last year, I didn’t want to go out. I had no exciting plans, but even if I’d had them, I probably would have skipped them. I was sad, anxious, and overwhelmed. My grandfather had just passed away. I was still reeling from the passing of my grandmother almost exactly one year earlier. My financial situation was precarious. My hearing for social security benefits was still a few weeks away. My long term disability claim was about to be reviewed and possibly denied. My health was lousy. I was trying so hard to get better and I just couldn’t seem to make the progress that I wanted to make. I had no desire to celebrate the end of such a crappy year, and I wasn’t filled with hope or anticipation for the coming year. I dreaded attending any sort of celebration with happy, optimistic people. So when friends invited me over to hang out, making it clear it would be an early night, that sounded perfect. We talked. We played board games. And when midnight rolled around I was at home in my pajamas, watching the fireworks alone on tv.

By January 2, life had resumed as normal, and I continued plodding along.

This year is difference. I’m not looking forward to some wild, crazy night. But then, even with perfect health I probably still wouldn’t be. I guess that’s what age does to you. I don’t feel the need to celebrate, but I also don’t mind it. Some friends want to get together for a low key evening of talking, drinking, eating, and playing board games (we all love Settlers of Catan) and that sounds just about right to me. We’ll all toast the new year in together, but we won’t stay out too long past midnight. 2 couples have young children who will wake them up early and the other person will get up early for bird watching the next morning. So even if I didn’t need to get to bed at a reasonable time, everyone else will probably be leaving by 1am anyway.

But it’s more than the logistics, of course. This year I saw such improvement. I recently lost another grandparent and that has been difficult, but his final weeks and days were not as horribly painful as the others’. I lost my long term disability insurance coverage but I gained social security. More than that, I no longer have to worry about either one. The lack of worry has had an enormous impact on the improvement of my health. On top of that, I have stable health insurance for the first time in years. With the ability to see doctors and try new treatments, and with the lack of stress, not to mention with another year of the previous treatments under my belt, I’ve seen some huge improvements in the last year. Sure, I still have big health problems, but they’re more manageable and I have more reason to be hopeful.

I still have health-related problems that I’m trying to figure out. I want to see some doctors that don’t take my insurance. Social security disability doesn’t come close to paying all of my bills. I’m still not sure what’s causing some symptoms. I’m still reacting badly to some medications. But overall, I feel better enough that I can be optimistic that I’ll figure out ways to handle all of those issues sooner or later.

It’s not perfect, but it’s better.

One year passes quickly, but it’s really a long time. 365 days. 52 weeks. 8760 hours. It’s going to pass no matter what, so the best we can do is hope that as it does, our lives will be good and our health will improve, or at least not get worse. Then we need to do all we can to make those hopes a reality.

I don’t know how I’ll be feeling 1 year from now. Maybe better. Maybe worse. Maybe the same. But I sure as hell hope I’m doing better. And I hope you are too.

As we welcome 2015 and those 8760 hours begin passing, I will be hoping that you and I all see some good times, some improvement in our health, and some ways to manage the difficulties we face.

Here’s to us.

7 Comments | Expectations, Healthcare, Isolation, Limitations, Milestones, Raves, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

Choosing to stay home vs. being stuck at home

December 23, 2014

If you’re a spoonie, you probably know what it’s like to be stuck at home. And maybe you sometimes get to choose to stay home. They’re very different.

For most of the last few years, when I was home it was because I was stuck at home. If I felt up to going out, I did because I knew I had to take advantage of the limited opportunity. But lately I’ve been feeling a bit better and I’ve been choosing to stay home. I’d sort of forgotten what it was like. I’d had a lot of time at home before, but this is different, and I’m still learning the ways that it’s different.

When I’m stuck, I want to go out, or to at least have the option to go out. When I can choose, I often don’t want to go out and have to talk myself into taking a walk or running errands, just to get fresh air and exercise.

When I’m stuck, I’m often lonely. When I can choose, I appreciate the quiet solitude of being home alone.

When I’m stuck, I’m sad to miss out on social events. When I can choose, I feel less bad if I miss those events.

When I’m stuck, my apartment feels small and cramped. When I can choose, my home feels warm and cozy.

When I’m stuck, I’m bored and can’t do much beyond watch tv and read a bit. When I can choose, I often feel well enough to work on hobbies, cook, clean up the clutter, and also read and watch tv (not all on the same day, though.)

When I’m stuck, I feel sad. When I can choose, I feel content.

When I’m stuck, I’m very aware of the pain and fatigue. When I can choose, the pain and fatigue are obviously less, and feeling better allows me to mostly ignore the pain and fatigue that remain.

When I’m stuck, I spend a lot of time on social media, trying to connect with the outside world. When I can choose, I spend more time doing things on my own.

When I’m stuck, I think about the things I can’t do. When I can choose, I focus on the things that I can do.

When I’m stuck, I make plans for a future that seems remote and unlikely. When I can choose, I make plans (the same plans, by the way,) for a future that feels foreign but possible.

When I’m stuck, I go out every chance I get. When I can choose, sometimes I go out and sometimes I stay in.

When I’m stuck, having company is thrilling. When I can choose, sometimes company is nice and sometimes I’d rather stay home alone.

When I’m stuck, I am very aware of being stuck. When I can choose, I’m very aware that I have a choice. And I’m so incredibly grateful to have that choice.

7 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Raves, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

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