The circular reasoning of spending money to get off benefits

February 4, 2018

I was always one of the few people who didn’t stress about money. I was lucky.

My parents raised me in a comfortable home, where we never worried about the basics. We didn’t take a lot of fancy trips, and my mom didn’t wear a lot of expensive jewelry. My parents bought new cars like Camrys – new, but not luxury. I got an allowance every week. It wasn’t huge, I saved it. I saved a lot. I saved my babysitting money. I saved my summer job money. I spent some too, but I saved more than I spent. By the time I went to college, I had decent savings.

My parents paid for college. I got a fellowship for my first year of grad school, then worked two jobs to pay for the next year. I never had any debt. I worked in nonprofit, so I didn’t earn a lot, but I lived inexpensively for the most part, and it all worked out.

Until I became too sick to work. That changed everything.

Suddenly, I worried about every dollar I spent because I knew I couldn’t earn more. I also knew that my benefits didn’t quite cover my expenses. I was taking money out of savings to make up the difference, and how long could that last? Thank goodness for my savings!

And then my health started to improve. I felt I could work a little bit. Not enough for an office job. Not enough for a typical work-from-home job. I couldn’t predict which days I would feel up to working. Or which weeks I wouldn’t be able to work at all. So I started my own business.

Things didn’t go great. I made some money, but nothing consistent. Worse, there was no way to earn more without putting in more hours, and that was impossible. I burned out fast.

I decided it was time to try a different type of business. I had thought about it a couple years ago, but discounted it for a few reasons. For one, it seemed less fun. For another, it required taking a decent amount of money out of savings and risking losing it. But now, I don’t have a lot of options, so I have to try.

Even more than risking that money on the business, I’m going to hire a coach! And the coach isn’t cheap. Still, if I’m going to do it, I should do it right, right?

This is a decent amount of money coming out of my savings. I don’t think I would have loved it at any time in my life, but right now especially, it makes me very nervous. I need this money!

On the other hand, what am I risking? This money in my savings could cover me for  year, as long as I have my other benefits. But for various reasons, I am about to lose some of my benefits (fuel assistance, utility assistance, food stamps/SNAP.) So this money would cover me for less than a year, in addition to social security. I could lose a year’s worth of non-rent expenses.

That’s the risk. But what about the reward? If this works, I could earn enough to get off of benefits altogether! I could support myself without having to work full time. I would do the work from home (or from anywhere, as long as I have a laptop and internet connection) and make a full time income. It would be amazing!

That’s what I’m holding on to. That hope that maybe, just maybe, this could work.

I know it’s a long shot. Very few people manage to get off of benefits. I could even earn enough to lose my benefits without earning enough to support myself, which is the worst-case scenario (and the one I’m going to be careful to avoid.)

I am supposed to pay the coach today, and I’m nervous as hell. I keep holding off. It’s A LOT of money. But on the other hand, it isn’t that much money. And there’s the rub. If I was working, it wouldn’t feel like all that much. Yes, it’s a lot (thousands of dollars), but I’d be earning, and I don’t have debt. It only feels like so much because I can’t earn more. But ironically, I need to spend it so that I have a chance at earning more, even though it’s my fear of not being able to earn it back that’s stopping me from spending it in the first place.

I have been wrestling with this decision for a week. Every time I convince myself to do it, I chicken out. But tomorrow is it. The final deadline. Because at some point, the coach needs to fill in this slot in her schedule, and I need to sleep better at night without worrying about this.

And who knows? Maybe, just maybe, it could work…..

Do you have these same kinds of feelings about spending money, even when it feels necessary or beneficial in the long run? How do you handle the complicated emotions it brings up?

P.S. This isn’t a get-rich-quick scheme. My goal would be to earn back everything I spent by the end of this year, to make a profit next year, and to hopefully be off benefits the year after that. If this works, I’ll be happy to tell you all about it.

Leave a Comment » | Decisions, Expectations, Frustration, Job, Limitations, Rants | Permalink
Posted by chronicrants

Resenting my overwhelm

January 30, 2018

We all know the stereotype: the lazy person on benefits, who spends all day watching tv and eating junk food because they don’t feel like working.

We all know the reality: nothing like that at all.

Still, in general I find that even though I’m busy, I can manage. Some days I don’t feel up to doing as much, but it more or less works out. Sort of. Well, close enough.

But sometimes I feel overwhelmed by everything. Driving 6 hours in one week for various doctor appointments. Physical therapy at home. Eating the right foods in the right amounts at the right times. Getting tests run. Exercising. Feeling guilty whenever I don’t do one of those things. Always trying. Always running. Sometimes even finding time for family or friends. But not nearly often enough. Seeing notes about things I want to do, and wishing I had time for them.

And I should have time for them, shouldn’t I?

I hate this feeling. I don’t even have a full time job, damn it! Why am I so overwhelmed?

Of course, we all know why. It’s because I do have a job. Sure, I’m not getting paid for it, but my health is a big job, and it’s never ending. Add to that, I don’t have as many “good” hours in a day as my healthier friends do. I’m lucky to start doing anything “productive” by 11am. By dinner time, I am done.

Sometimes I do things practically nonstop in those intervening hours. Sometimes I can barely manage to feed myself. It all depends on the day.

And that unpredictability only adds to the overwhelm. My calendar might look good, but when I suddenly lose a day of productivity because I feel like crap, and everything else has to get rearranged, then it’s suddenly way too crowded. I build in “rest” days, but I can’t predict. My body might decide it can’t manage anything on Tuesday, even though my “rest” day isn’t until Thursday. Or I might rest on Thursday and feel like I need still more rest on Friday. Or sometimes the “rest” days are perfect, and if I schedule less and then feel ok, than I simply do less, instead of using the “extra” time to get more done.

My new goal for 2018 is to take days to take days off, and so far it’s helping. But it’s not enough.

And the funny thing is, next week I might sleep better or do something fun, and suddenly I will feel like everything is under control. But this feeling of being overwhelmed will come back. It always does. And with it, comes an uncomfortable guilt. Because after all, it’s not like I have a full time job.

Note: I would be the first to support a friend who feels this way. I would tell them that of course they have a job, and they are completely justified to be so overwhelmed. So I am repeating to myself what I know I would be saying to someone else. And it helps.

2 Comments | Expectations, Fatigue, Frustration, Limitations, Rants, Unpredictable | Permalink
Posted by chronicrants

Please don’t take away my physical therapy

January 25, 2018

For most of my life, my posture has been lousy. My shoulders hunch forward, I never sit with my legs down properly (in large part because I’m very short, and I can’t comfortably sit that way, since my feet won’t be flat on the floor), and of course, there’s the scoliosis. Two different forms for scoliosis, actually. Thanks to all of that, and a doctor who majorly screwed up (she measured my legs wrong, and for years I wore a lift on the WRONG FOOT!) I have a lot of neck and back pain. And that’s even before you consider my mis-aligned kneecaps, which have worn away most of the cartiladge on the outer sides of my knees.

So you won’t be surprised to learn that I have been in physical therapy for neck and back pain a bunch of times over the years. I’m doing it now, too. But this time it’s really helping. Probably because I’m not getting cut off after a few short months, like all of the previous times.

If you’ve ever done physical therapy, I’m guessing this will sound familiar. I would go in 1-2 times per week for a few months, be given exercises to do at home each time, and then at the end, told that if I go home and do the exercises, I’ll be fine. And when I wasn’t fine, when I came back for more help, I was treated like I failed.

And yes, I admit that I wasn’t as consistent with the exercises as I should have been. But even so, it felt like something else was going on.

That brings us to 2017 when, for the first time in my life, I went to physical therapy appointments for the entire year. Sometimes I would go 2 or 3 weeks in a row. Sometimes I would miss 2-3 weeks. But always, I went back. In between, I did my exercises at home. Sometimes I was consistent and sometimes I wasn’t, but I always tried.

And it helped. A lot! So you can imagine my disappointment when I went to physical therapy yesterday to be told that Medicare has lowered its coverage limit.

Oh boy.

On the bright side, this might not effect me. She had checked and last year I would have just squeaked by under the 2018 limit. Still, it’s disconcerting. We will need to be careful.

We talked about having me come in less often. Or maybe skipping a few weeks here and there. Or maybe coming in for shorter appointments, since the limit is on the dollar amount covered, not the number of visits.

Not for the first time (not even the only time that day!) I came up against the problem of having to manage my health in the face of insurance limits.

On the one hand, this is totally fair. After all, they need to set limits, right? On the other hand, this is my health, and isn’t the whole point of paying into the system so that it will cover me when I need it to? What good is it if it won’t. I’m not the cheapest person on the insurance’s rolls, but I’m far from the most expensive. And damn it, I want my physical therapy! Without physical therapy, my pain and posture will get worse and that will harm me in a lot of other ways, limiting my ability to work, meaning I will need even more benefits.

After all, I am losing a bunch of my benefits this year (yeah, that’s a topic for another post) because I earned more last year. Don’t they want to keep me off those benefits? They should want me to be healthy, if only for financial reasons. They should consider that more physical therapy will actually save the system money in the long run.

But no one worries about that. They certainly don’t worry about the human being behind the numbers. The human being who simply wants to be in less pain, who wants to stick with the thing that works, who tries so hard to feel better every single day.

My physical therapist warned me that Medicare changes its limits every year, and she implied that future changes would not be in my favor. I am not surprised. But I am horribly, sadly, painfully disappointed.

Leave a Comment » | Frustration, Healthcare, Medication, Pain, Rants | Permalink
Posted by chronicrants

Feeling fatigue frustration

January 20, 2018

Fatigue is my most frustrating symptom. Unlike the others, I can’t push through even small amounts of it. Unlike the others, it feels vague and a little unreal. And it stops me from doing so much.

My pain has been better lately. I can work around it. The nausea is still a major problem that causes me a lot of anxiety, but it doesn’t happen too often. But for some reason, the fatigue has been worse over the last few months and I just can’t fight it. I can’t push through. I can’t work around it.

I’m going out less. Exercising less. Doing less. Feeling less than.

It’s hard to explain this feeling to people. It isn’t a matter of going to sleep earlier or waking up later or taking naps. I have no reason to think I’ll feel better tomorrow or next week or next month until we figure out the cause and do something to fix it.

And yet I want so badly for it to go away.

This isn’t as bad as the fatigue I had 5 years ago. It took years to improve that, and I want to avoid getting back to that bad place. Still, this level is also limiting, and irritating, and oh so FRUSTRATING!

There is so much I want to do. Today is unseasonably warm and I was going to take a walk around a local Pond. That walk always makes me happy. I’m not in too much pain. But I just don’t have the energy. So much for that plan.

I have lists of things I both need and want to do, and I feel like I can’t do any of it today. Will I manage more than watching tv in my pajamas? I have no idea.

I’m frustrated. And I hate it. I am used to pushing and fighting for things, and I can’t do that. If the fatigue is being caused by an adrenal problem (which is looking likely as we’ve been running tests and ruling out most other potential causes) then pushing and fighting will only make it much worse.

There are no answers today. All I can do is hope it doesn’t last too much longer. And try very hard not to blame myself for not doing more.

So I am writing this in part to complain (hey, what did you expect from a blog titled Chronic Rants?) and in part to offer support to everyone else dealing with fatigue. It can stop us from working, from socializing, from buying groceries, from cleaning the house, from taking a walk, from sitting up. Fatigue sucks. And I hope yours and mine improves very soon. And in the meantime, I hope we can all find good audiobooks and tv shows for when we have enough energy to enjoy them.

(On a side note, I love audiobooks, so if you want suggestions of what to listen to, comment with the kind of stuff you like and I’ll be happy to give you some recommendations! I listen to most genres – adventure, chick lit, historical fiction, murder mysteries, all kinds of non-fiction, etc.)

3 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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