Why I’m scared to work

September 14, 2015

Up until a few years ago, I just assumed I’d work a full time job. At one point I quit a job where I was miserable and I took some time off before going back to work, but of course I assumed I’d get another job, and I did. I always worked.

Until I didn’t.

I’m coming up on the 4 year anniversary of when I left my job for what I thought was a few months to rest and recover. Little did I know….

A lot has happened in those 4 years. At the start, doing any sort of work was out of the question. It took every ounce of energy I had to cook dinner or read a book. I didn’t have the physical or mental ability to do any sort of paid work.

Then slowly, I saw some improvement. I began to leave the house more. I did some volunteer work from home. I did favors for friends that involved using my brain in ways that I hadn’t in a while. My cognitive abilities still weren’t what they had been, but they were better. My physical health had improved, too.

As I felt better, I wanted to do more. I started thinking about small ways to make money. I sold my crafts. I did some more of the consulting that I’d let fall away. Someone asked if they could hire me to help them with a project and I said yes. It felt so good to get paid! Still, I was no where near being able to cover my bills. I needed something bigger.

I thought about that person who hired me out of the blue. I thought about the clients I had. That was good money with a flexible schedule and I could do most of it from home. In fact, with a little creativity and Skype, I could probably do it all from home. So how could I get more clients?

I don’t have all the answers, but I do have an initial plan. I’ve been reading a lot, I’ve listened to podcasts, and I joined Facebook groups of other people trying to make money in similar ways. The difference, of course, is that most them are working full time and they work on their side businesses in the mornings, after work, and on weekends. Even so, they probably put in a lot more hours than I can. On a good week I can do 5-10 hours, and on a bad week I’ll be lucky to do 2. So I figure that if they can earn good money in a matter of months, then I should be able to do the same within a year.

With a lot of the research done, I crafted my plan. And then I got stuck. I was scared. At the beginning, I probably won’t earn much, but what if I begin to earn more? How will I handle that? If I earn more than $780 per month for 9 months, and those months don’t need to be consecutive, then I’ll lose my social security benefits. That means I’d better earn enough to make up for that! But actually, that’s not the part that scares me.

No, what scares me is 3 years from now, and 10 years from now. If I can manage to earn a few thousand dollars per month doing work from home that I somewhat enjoy and that doesn’t strain me too much, then yay! Fantastic! Perfect! But what if I can’t keep it up? What if 3 years from now I’m back to where I was 4 years ago, completely unable to do any paid work? And I’ll need to reapply for social security. And what if I don’t get it? Or what if that happens 10 years from now? Or in 10 months? Or 6 1/2 years? Will I be living always in fear of being unable to support myself?

Yes.

But what if I don’t do this? What if I stay on social security without working? I’ll be watching my savings dwindle as I use them to pay for all of the things that my benefits don’t cover, like medical expenses, electricity, some of my groceries, car expenses, part of my rent, everything related to my car, and any sort of entertainment (yeah, right!) And what will happen when my savings run out?

So I have to do this. I have no choice. If I could work a regular hourly job then I could make sure my income stayed consistently at $779, but that just isn’t an option. So I know I need to do this.

But I’m still scared.


Feeling sick from imaginary germs

August 31, 2015

It isn’t always absurd. If a friend tells me she’s sick, and we just saw each other the day before, it makes some sense that I might worry I’ll get sick, too. Of course, what doesn’t make sense is when I immediately start feeling symptoms.

What makes less sense is when a friend mentions on Facebook that he’s sick and I start feeling sick, even though he lives 3000 miles away and we haven’t seen each other in a year.

It hasn’t always been this way, but somewhere along the lines, my anxiety about health issues snuck up on me and now I often feel sick at just the mention of illness.

Tonight was even worse: I felt sick as I listened to the narrator in the audio book I’m listening to describe feeling ill. She’s a fictitious character in a novel, and she probably isn’t even sick (or if she is, I’m guessing that it’s relevant to the plot in a very specific way, but I digress) and even those imaginary germs from a character in a novel got me feeling queasy.

It’s absurd. It makes no sense. But it happens all the time.

If anyone can explain this to me, I’d really appreciate it. Maybe if I understand it, I could learn to somehow avoid it!


This isn’t the last good day

August 29, 2015

Sometimes it’s hard to miss out on good things. Ok, it always sucks to miss out on good things, but when you have a chronic illness and you miss a lot of them, it can be really hard. After all, it’s not like I’m missing out on one good thing because I’m busy with something else. No, I’m missing it so I can sit at home in my pajamas and feel lousy.

I’ve been handling these days better lately, and the trick for me is to remember that this isn’t the last day of good stuff. Yes, I know I would have had a lot of fun at my friend’s birthday barbecue in this absolutely perfect weather. And tomorrow I’ll probably miss out on several things that I know I would have loved. But I’ll have other nice days. There will be another day with friends, another day of good weather, another day of sunshine. It won’t be the same, but that’s ok.

I’m sure this approach won’t work for everyone, but it works for me. Today I’m missing something I’d been looking forward to for ages. But next week or next month or some other time there will be something just as good or better. I just need to look forward to that.

And until then, there’s tv and food for comfort.


Too much weight on the seesaw

July 27, 2015

You know those cartoons where someone jumps on one side of a seesaw and the person on the other side goes flying up in the air, over the first person’s head, and finally lands in a puddle of mud? Keep that image in mind.

Being chronically ill requires a careful balancing act. Symptoms, treatments, pills, diets, supportive friends, unsupportive friends, jobs or lack thereof, and everything else in life contributes to this. If were all placed on a seesaw, somehow it would just evenly balance, so that neither side was on the ground or up in the air. Sure, it might totter. You might feel like it was going to tip at any moment. But miraculously, it wouldn’t.

That’s how it feels, most days. Obviously, something big could throw that seesaw out of whack, just like it would for a healthy person. A car accident or death of a loved one will always disrupt life. Usually small things can be absorbed into the heap on either side of a healthy person’s seesaw without any lasting disruption to the equilibrium, and that’s great. Those of us with chronic illness know that our seesaws are a bit different. They have a lot less room for extra weight.

I was chatting with a friend yesterday. She updated me on her recent hospitalizations, then said, “I know this is going to sound silly compared to everything else, but I have an ingrown toenail….” I knew just what she meant. When we deal with severe health problems, it feels like we should let the little things get to us, but I feel like it’s the opposite: because we deal with severe health problems every single day, we just don’t have the capacity to handle anything new, even if it’s small.

I often feel the same way. I could be in excruciating pain, trying to simply breathe through it, and some small new problem sends me into a tailspin. Why? Because I’ve already used up all of my energy dealing with the pain and I just don’t have a damn bit left for anything else. That new thing, tiny though it is, adds just enough weight to one side of my seesaw that everything on the other side flies up and lands in the mud.

Have you experienced this yourself? I’m certain at least some of you have. My friend was relieved to hear that I had. We’re often told by society that we should be able to handle our health problems, and for us chronically ill folks that’s hard enough on the best days, so it feels like defeat to let a so-called “small” problem tip our seesaw. But I’m sure it’s happened to some of you. Please share in the comments; if you don’t want to share details, a simple “Me too!” will let others know that they aren’t alone.