Forgetting that I can’t work

July 13, 2018

She was telling me about her search for a part time job that would both meet her logistical criteria and be interesting for her. After years of working just a few hours each week from home, she wanted a change. Just listening, I got excited, and remembered the feeling of accomplishment I got when I worked. I started thinking that I should look for a job, too. Then I quickly came back down to Earth.

Of course I couldn’t work. She stopped working because she could: her part time work from home was lucrative, and her husband earned good money. She was in fine health and there was no reason for her not to get work if she wanted to. I, on the other hand, can’t work. I am too sick. Even my attempts to work part time from home have failed, resulting in worsening health and little money. My only success so far has been dog sitting. I love it, but it doesn’t cover my bills and it doesn’t use my brain the way my former jobs once did.

The strange thing is that this isn’t the first time I’ve forgotten I can’t do something. I had to stop working almost SEVEN year ago. This isn’t new. Yet sometimes I forget. Because I still feel like the old me sometimes, like someone who can go on dates and go out with friends and work full time and clean my own apartment. Maybe I didn’t always enjoying doing all of those things, but I did them. And now I can’t.

I struggle to reconcile who I was, who I feel I should be, and who I am. They’re all me, but somehow, they’re not. My abilities and disabilities alter my personality in ways I don’t expect, but then leave other parts intact, much to my surprise. So I forget. I forget that I can’t go on a hike or swim before heading to a party or get a job. And forgetting isn’t the problem. Remembering is the problem. Because remembering sucks. Remembering brings it all crashing back.

So I will try to support my new friend in her search for a part time job, while also trying to stay grounded in the knowledge that I am unable to do the same. Because right now, that’s my reality.

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

Totally. Freaking. Out.

June 2, 2018

I just got a letter in the mail that’s bad. Very bad.

I’ve been having a hard enough time lately. I’ve been feeling really lonely and isolated. I want to date but don’t feel up to it. My birthday is coming up and I feel time passing me by. My youth is disappearing and I haven’t had a chance to live it. That’s all horrible enough, and I’ve been struggling to deal with it.

But then the letter came.

From the Social Security Administration.

Once upon a time, I became too sick for work, so I applied for social security disability benefits. I was denied.

I appealed. I was denied.

I appealed again. I went before a judge. And finally, I won! That process took two and a half years. Two and a half years of trying to prove that I really was as sick as I was. I finally was able to breathe in July 2014. I was relieved, and could finally focus on my health. During that time I was so stressed out that it was hard to make any improvements in my health.

I knew then that I would face a review of my case every few years, but time went by with no review, and I mostly forgot about it. Occasionally it came to mind, but not often. Thanks to budget cuts, they didn’t have the staff to do frequent reviews.

But today I got the letter in the mail: they’re reviewing my case. I have 30 days to mail in the form. Shit shit shitty shit shit.

It’s a deceptively simple form, just 1 page double-sided. But the questions are hard. List doctors have I seen, tests I’ve had done, and evaluations I’ve had in the last 2 years? And there’s only space for THREE? Are they kidding?!? Which ones should I list? This is why I need a lawyer.

Too bad my former lawyer isn’t practicing anymore.

I have 30 days to find someone new, interview them, hire them, set up a meeting with them, and get their help with this shit. Because this time, I’m getting a lawyer from the start. If they’ll work with me.

Is my health better, the same, or worse? Um, some aspects are better, some are worse. But what will my doctors say if they’re questioned? You see, these questions are tricky!

And it gets worse, because I there is a very likely chance I will be denied, and will have to appeal. And what happens then? Will I lose my Medicare health insurance during the appeal? If I do, then I will also lose MassHealth. And without steady income coming in, I could lose my affordable housing, for which I must prove financial viability. As it is, my income is “too low” for affordable housing, and I had to use my assets as proof of my ability to pay. Without any income, will that be enough?

And what will I do without any income?! I will have to start cashing in my investments pretty soon. As it is, I manage to sort of make things work, but the numbers in my bank account have been slowly moving down. This will make them move down a hell of a lot faster.

There’s a chance I won’t be denied. An incredibly slim chance. I’m not holding my breath for that.

What can I do in the meantime? It’s a Saturday evening, so I have to wait a day and a half before I can even call a lawyer, and who knows how long it will be before I can speak to one!

I’m trying to stay calm. I’m going to ignore the rest of the things I wanted to do tonight (except my physical therapy, because my health doesn’t magically improve just because the government is being a pain in the ass) and try to rest with tv and knitting, two things I find relaxing.

And I will hope that everything works out. Maybe tomorrow I’ll buy a lottery ticket. Because nothing would make me happier right now than knowing I can just throw that form in the trash because I don’t need it. Or maybe I can marry someone rich (as if I’ve had any luck in the relationship department anyway.) The thing is, there just aren’t that many options.

Happy birthday to me.

10 Comments | Frustration, Job, Politics, Rants | Permalink
Posted by chronicrants

Trying to manage when it feels unmanageable

May 7, 2018

Somehow I used to work 45+ hours per week, cook, clean, do errands and chores, and have a social life. How?

Now I feel more overwhelmed than I did then, and I do a lot less. In some ways. In other ways, I suppose I do a lot more, but it’s hard to remember that. Our culture is so wrapped up in “jobs” and “what do you do for work?” and “you must have a lot of free time without a job” that it’s easy to feel like a failure for being overwhelmed without the 9 to 5.

CR - time and overwhelm

I think that my mental and emotional tolerance for these kinds of things is way lower than it used to be. But I also know that I do a lot. Dealing with pills and physical therapy exercises take up time. So do meal planning, clothes planning, and all of the other planning around my health issues. Meditation, reading up on symptoms and treatments, and writing this blog also take up time. Then there are the many, many medical appointments. And that’s all before we talk about actual acute symptom management. Not to mention, the extra hours I need to spend in bed and resting on the couch. Put that all together, and that’s my full time job.

2018-05-06 08.21.53

Then there’s my work. It’s not a 9 to 5, but it’s all I can manage. Sometimes, it’s more than I can manage. I sell craft items I make. Or at least, I try to. I have an online coaching business. I just tried to start another online business, but it was too much, and now I’m in the process of shutting it down. I do dog sitting. Not every day, but a little is better than none. It has the advantage of giving me canine company. Right now, this beautiful dog is snoring next to me!

There’s also non-work work. I do a little bit of volunteering for a support group that I’m in. I speak to friends, friends of friends, and friends of friends of friends about health issues and try to assist the best that I can.

On top of all of that, I have typical adult stuff: laundry (which I should actually be doing right now,) grocery shopping, cooking, dishes, cleaning, other errands. This week I finally got a haircut, which was about 3 weeks overdue. I wanted to do it sooner, but between feeling sick, being busy, and simply feeling overwhelmed, I wasn’t able to do it.

I have personal projects. I am currently writing a book about living with chronic illness. I am trying to clean out the clutter in my closets. I’d like to experiment with some new recipes. I want to spend more time reading.

On top of all of that, as if it weren’t already enough, I’d like to socialize more. Over a year ago I left the city and moved out to the suburbs. I want to make more friends out here. I want to spend more time with my old friends. I want to date. After a recent breakup I finally feel ready to date again, but I have no time or bandwidth for it.

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It’s true that I’m less efficient than I used to be. Let me sit in front of the computer to work for an hour, and I will accomplish less than I could have accomplished in an hour 10 years ago. Some of that is illness-related. Some of that is being out of practice. But I am working for that hour and I do get shit done.

It’s just that there’s always more to do than I can manage. And something’s gotta give.

Which is why I am not dating. Which is why I am closing one of the businesses I started. Which is why I don’t socialize nearly as much as I’d like to. Which is why I don’t have much fun in my life these days. Which is why I am stressed out and overwhelmed and feeling like a failure. Sure, I know that I am not a failure. It’s just that sometimes it’s hard to remember that. To really believe it. All I can do is keep remembering how much I do, and strive to eventually get to a place where I’m less overwhelmed.

And for you, dear reader, I want you to know that you’re not alone. In the chronic illness world, we often seem to have 2 modes: doing a lot that never seems to be enough and feeling overwhelmed and stressed out; or doing very little “productive” stuff while we rest and take care of our health and feel guilty about not doing enough.  But we shouldn’t feel guilty. We are doing the best we can to take care of ourselves. Some folks are even taking care of families as well. It’s hard. Fucking hard. And we deserve praise and congratulations for everything we work so hard to do, even when it’s not as much as what we want to do. So give yourself a figurative pat on the back. And then go do something FUN and don’t feel guilty about it. You deserve it.

Note: I have written many times about being on benefits, so some of you are probably wondering why I’m busting my butt with multiple jobs. That is because when I add up social security, food stamps (SNAP), and fuel assistance, I still fall far short of what I need to pay my expenses. I live in affordable housing and my rent is currently over 90% of my social security income. Then I need to pay for utilities, car insurance, gas, car maintenance, medical treatments that aren’t covered by insurance, and maybe once a month I might even go out for a cheap meal. On top of all of that, I am nervous about the future state of benefits in this country, and don’t want to rely on them. I would much rather earn my own way and be independent of them. For now my goal is to earn enough to support myself with benefits. Down the road I would like to get off of them, though I know that’s a rare and difficult thing to accomplish.

2 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Job, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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

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