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

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?

6 Comments | Expectations, Frustration, Isolation, Rants, Unpredictable | 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

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

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