I want my time back

May 25, 2017

Back in the days when I worked full time, I felt like my job ate up all of my time. And it did, in a very obvious way.

Now I feel the same way, but it’s less obvious.

I’m trying to work, to earn some money, and it’s hard. It’s also time consuming. I’m doing this part time because that’s all I can manage, but even that feels like a lot.

And then there are the doctor appointments, the daily physical therapy, the extra time spent on food preparation, and just resting. The health stuff is its own part time job.

I’m constantly doing things and when I’m not, I feel bad because I should. Right now, I should be working on my new business, running errands, and exercising. There are so many shoulds, and not enough time.

I want to believe that I would gladly put in the time if I knew it would work, but even if the business succeeds, can I still maintain this level of input? What happens if I get a dog? How would I find time for him?

I am trying so hard to constantly work and be productive during my “good” times of the day, so I can rest during the others, and in that respect I’m succeeding. I get plenty of rest. But I also feel plenty of overwhelm. I don’t know what the answer is, or if there is one. I only know that I can’t do as much as I’d like, which is still only 20% of what I used to do, and it’s frustrating.

Desperately wanting to get off benefits

February 26, 2017

As I started to write this, it felt incredibly familiar. So I did a quick search and what do you know, I wrote this almost identical post a year ago! So much has changed, and yet so much has stayed the same….

My health has continued to improve. No one is more surprised than me! It’s not like I’m well enough to work a full time job, or even a part time job from home that requires set hours. But I’m doing some part time work from home for myself (doing some consulting) that isn’t paying much yet, but there’s some hope. Still, it’s hard to aim for a very specific amount of money, knowing that I can’t earn “too much” because I’d lose my benefits.

Lately I’ve been more desperate than usual to get off of benefits. I hate the feeling of enforced poverty, and I’m not even poor! The income is way too low, but I have a ton of savings from back when I worked, and by cutting out all of my unnecessary expenses and getting a bit of help from my parents, I’m making it work.

The thing is, I don’t want help from my parents. They’re lovely and I adore them and they never do anything to make me feel bad about needing their help. But I was financially independent the day I graduated college (they paid for it, bless them.) I had a job, an apartment, and savings from all of my previous years of work. They might occasionally give a generous check as a birthday gift, but that was. Now, they pay for my cell phone, pick up groceries for me, and do other little things, in addition to helping out in larger ways. I love them for it. But I hate it.

On top of that, I miss luxuries! I don’t need anything too fancy, but I’d love to go out to dinner without having to worry about it. I want to buy a sweater or two to replace the 5 that are threadbare. I hate that everything I spend beyond my rent is coming out of my savings, with the knowledge that I’ll never be able to replace it. Once I was out of work for a while, and I spent money from my savings. Fine. Because I knew that once I got a job, I’d put money back into my savings accounts, and I did. But this is different. If I stay on this path, I will never again be able to save any money at all. And that sucks so much.

My new consulting business is financial coaching. It’s something I started doing ages ago, back when I had a full time job, but now I’m trying to do more of it. It sucks to advise people on how to build up their savings when I can’t do that for myself. I read books and blogs about effective ways to save, thinking about which principles I’d like to apply myself, and then I remember that I can’t, and I never will.

I feel trapped. And lately I’ve been trying to escape from the cage. But there’s no way out.

I do the math over and over. After all, that’s my thing: calculating money. I figure out how much I would need to earn in order to support myself without Social Security, fuel assistance, food stamps, MassHealth (Medicaid), Medicare, or my new affordable housing situation. I multiply for taxes. I do the math and it feels impossible. But what if….?

And then just as I begin to think it might be worth trying, I remember that even if I can manage to work for myself from home for a while, chances are good that my health will take a dive at some point and I’ll be unable to work again. I could try applying for benefits, but it took over 2 years the first time, and I there’s a good chance the next time I wouldn’t get them at all.

If I’m going to get off benefits now, I have to earn enough that I can save huge amounts every year to defend myself against needing benefits again in the future. I have a lot of savings now, but not enough to last the rest of my life, which could be another 50 or even 60 years. I would be too nervous to go off benefits until I was saving large amounts of money. That would be in addition to the money I’d need to earn to pay my regular bills.

This isn’t impossible. My odds are better than 0. It’s just that right now, at this moment, it doesn’t feel that way at all.

Still, I’m aching to get out of this cage.

The guilt of not working on the “good” days

June 26, 2016

“Would get a job if you were feeling better?”

It wasn’t a doctor or a judge or a parent asking me this, but a friend who has chronic illness herself. I suspected her motives, but before I asked her about them, I answered her first. It’s not an easy question to answer, only because there are so many answers!

  • If I was feeling slightly better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better from time to time, I wouldn’t get a job.
  • If I was feeling a lot better every day and thought it would last, I would consider working, but I’d try working for myself first. If that failed after 6 months or a year, then I’d give in and get a job.
  • But if I was feeling a lot better every day and didn’t think it would last, I wouldn’t get a job.

And those are just a few possibilities. And they don’t take the loss of my social security and other benefits into account because my friend asked me to discount them. When I felt a lot better recently I was already working on a project to earn money from home. And sure, I started thinking that I could put more time into it and stand a better chance of succeeding. But then in the blink of an eye I returned to how I’d been feeling before. But even when I was feeling better I wouldn’t have considered getting a job, not only because I don’t want to work for someone else if I can help it, but because how I felt was still unpredictable. Better to work on my own schedule from home and not worry about someone else’s timeframe or spending energy on commuting.

But that’s me, and everyone is different. My friend had been doing much better lately, so she felt like she *should* work. She didn’t want to, but she was supposed to. Her husband came home tired from work every day, while she got to be at home. On the days she felt horrible she felt bad about this, but knew it was necessary. But now she was having more good days and felt she should do more. But her good days were unpredictable, so how could she do it?

Of course, she’s not the first one to raise this subject with me. Many of my married friends say they feel guilty that their spouse is solely responsible for supporting the family financially. Sure, some couples choose to have one person work while the other does not, but that’s a mutual decision. When chronic illness and disability are involved, it feels like there’s no choice.

One financial downside to being single is that there’s no one around to bring in any money. On the other hand, I’m only responsible for myself and my own feelings, and that’s freeing. I still feel sometimes like I *should* work, but only in a general way, only because that’s the pressure that I feel from society overall, and not from anyone in particular. Not that my friend feels pressure from her husband. But she’s aware of his extra responsibility. No one is responsible for me but me. It’s not easier, just different.

For my friend, I suggested that she volunteer one or two days a week to test the waters. She said she’d been thinking the same thing. I hope it works well for her. I really do.

As for me, I hope to never have another job, but I sure would love to earn a living with my own business! I’m working on it slowly, putting in a few hours here and there when I can. It’s going slowly. It may never work. But I’m trying. So maybe that’s my answer to the question? I’ll just keep trying to earn what I can when I can, but in a way that doesn’t set back my health. And of course, that’s the hardest part of all.

There’s no such thing as a chronic illness schedule

March 21, 2016

I used to work in an office. Back then, my chronic illnesses were more manageable.

Then I worked in an office 4 days a week and from home the 5th day. That helped. But eventually, that wasn’t enough.

Now I don’t have a job at all. Still, I’ve been making some money here and there when I can. Consulting work has gone ok, but I’d like to do something different. The problem with consulting is that I have to be ready to work at a particular time and place. Sure, I can often schedule the at-home part of the work whenever I want, but I have to meet with clients too. That part is really tough with a chronic illness. And that means I can’t take on as many clients as I need to.

I like the idea of “passive income.” With this method, I do the work up front and the money comes in later, without me having to be present at a particular time and place. For example, imagine I wrote a book. I’d put in a lot of effort up front on my own schedule to write it and market it, then when it came out I’d do some more marketing, but it would be less work at that point. The money would come in, but I’d have already done more of the work from the comfort of my living at my own pace. Sounds good, right?

The thing is, the work still has to be done. And I’m having trouble making that happen consistently.

I’ve found some other people who are trying to do similar things. One is married, has a young baby, and works a full time job, yet she works on her business more consistently than I work on mine. Then again, she doesn’t have a chronic illness. That doesn’t mean her life is easier or that she has more hours in the day. I’m constantly amazed by how productive she is. But it does mean that her schedule is fairly predictable. She works on the bus to and from her job each day. She works at night after the baby is in bed. She carves out time every weekend.

By comparison, I can’t even get a morning routine going. Some mornings I wake up and can do work within an hour or two. Other days I’m not able to do any work at all, and I go to bed without having even tried. Some days I get a lot done, but it has nothing to do with the new business. Today I wrote a blog post for that business and did a bit of reading. That’s not too bad. I also filed away some personal papers, sold something on Craigslist, did a ton of texting with various people, fixed something small on my mother’s computer, cleaned out my email inbox, made some phone calls, prepared an easy dinner and did the dishes, and took a shower. For someone else, that wouldn’t sound like much. Except for dinner, they’d do all of that before they left for work in the morning and on their lunch break. But for me, that was a lot. I had a busy weekend and I didn’t feel great. I never went outside. I wanted to bake, but never got to it. In fact, there’s a lot I wanted to do that I never got to. But I feel good about having done all of that. For me, that’s really big!

And that’s the problem. The every day things in life still have to be done, and I never know which days I’ll barely be able to get those things done and which days I’ll have the energy for a little extra. That means I can’t set a schedule.

I would love to say that I’ll get up at 8am every day, eat breakfast and work until 11am, exercise (ha!) and eat lunch, do personal stuff until 3pm, then have the rest of the day free. Or maybe do more work in the afternoon. But I can’t do anything like that. Every day is so different. Today I’m in too much pain to walk down a flight of stairs. Another day stairs are no big deal. Some days I can’t doing any writing because my brain just won’t function well enough. Other days I zip off a blog post in 1/2 hour. There’s no way to plan it. It just is.

It’s hard to explain all of this to the other entrepreneurs I talk to. They can’t understand why, without a job, I can’t put in more time on my business. And I get frustrated that even on my best days I can’t put in as much time as they do on their worst. I’m trying, but it’s just not working.

I know I need a schedule of some sort. That’s how I work best. This fit-the-work-in-when-I-can method means that other things get in the way and I end up answering emails and scanning Facebook instead of working. I need a better method.

If only I knew what that was.

Edit [3/23/16]: I just came across this post today (good timing!) and want to share it. If you’re looking for a way to earn some money yourself, maybe it will give you some useful ideas.

Major money success: I didn’t lose money this year!

January 11, 2016

I’ve played with the numbers from every angle, and I’m still not sure how this happened. This truth is that it almost didn’t.

Let’s face it, SSDI (Social Security Disability Insurance) doesn’t pay a IMG_20160111_110023.jpgwhole lot, especially when you didn’t contribute for very long and you never earned a big salary. Especially when you live in an expensive city with high rents. SNAP (food stamps) almost covers my groceries each month. Almost. Fuel assistance helps with the utilities, but doesn’t cover them completely. Health insurance (after I pay the premiums) covers most of my costs, but I still spend a whole lot more. I am so grateful for all of these, but after I added them all up, I was still far short of what I needed.

After all, I still have to pay for those health costs and utilities, car expenses including insurance, household stuff like dish soap and toilet paper, and so much more. I spend very little on luxuries like gifts, clothes, or a meal out with friends, but there’s still the occasional purchase.

I’m super lucky. Last year my parents bought me a new laptop. Back while I was still working I bought a super warm coat and a low-end-but-nice sofa. I have savings from back when I worked. But those savings aren’t enough for the next several decades so I want to avoid touching them if I can.

I’ve been watching my bank balances. Down and up, up and down. I did some consulting work when I could. I sold random stuff I had around the house that I didn’t need or want anymore. I sold some of my knitting. I did a bit more consulting. Some months looked really good. Others looked terrible. I hated the uncertainty.

Back in the days when I worked, I had a steady paycheck. Those days are gone. I want to work now, but that income would still be unpredictable. And right now, it’s completely ad hoc. Still, when I looked at the numbers (yes, I’m a numbers geek) in December, I could tell I was close. Was it possible? Could I actually BREAK EVEN this year?

I was nervous when I went over my 2015 accounts the other day. I blinked. That couldn’t be right. I went over it all again. It was true. I came out ahead! Yipee!!

I’m very lucky. I know not everyone can do this. I know I couldn’t do it last year or the year before or the year before that. But it I did this year, and I’m grateful for that.

So how did this happen? Well, I had several consulting clients. I did some work that I didn’t particularly enjoy, but I did it for the money. This including knitting some things I didn’t enjoy knitting, helping someone set up a WordPress blog (I really hate doing the back-end work, but others do too, so they’ll pay for it,) and listing things on ebay, amazon, and craigslist (I hate dealing with that shit) that I’d have happily given away if I didn’t need the money. I did some other work that I did enjoy, like knitting awesome projects and consulting on things I enjoy. But it was all worth it.

Of course, that alone didn’t do it. This is where the luck comes in.

First, I had savings from back when I worked. I had invested those savings. And those investments earned interest and dividends. Now, this wasn’t a huge amount of money. And it’s not money I’ll spend yet – all that interest gets immediately reinvested. Still, it helped me get a lot closer to breaking even.

With all of the benefits, the work I did, and the investments, I was so close to breaking even. This is where more luck comes in. My parents gave me a large birthday check earlier in the year. Then they gave me a large Chanukah check last month. And those put me over the top. Thanks Mom and Dad!

And let’s be honest, being able to work at all feels pretty damn lucky right about now. Sure, I did a lot of research and put in a ton of effort to improve my health to this point. But we all know that sometimes all of that effort and research doesn’t help. I’m glad that this time it did.

So benefits + work + investment income + gifts = coming out ahead! Without any one of those, I wouldn’t have made it.

There are no guarantees in life. I have no idea if I’ll break even in 2016. I’m going to try to start a business and maybe it will work and maybe it won’t. What I do know is that I somehow made the money work out in 2015.

For that I’m grateful.

Standing scared on the edge

November 20, 2015

It was always the same. The instructor was telling me to jump. I could feel everyone’s eyes on me. I knew it was safe. But I was terrified.

Some kids love jumping off a dock and into a lake. Those kids probably

5-9-2012 10-20-06 PM

Wish I could swim like these cuties!

know how to swim. Those kids probably aren’t scared of the unseen mysteries beneath the murky surface of the water. I, on the other hand, wanted to stay safe and dry on the dock. No such luck.

I did eventually learn how to swim. One day I was standing at the edge of a pool talking to someone, and a kid pushed me in as a joke. I had to be rescued. The next day, I finally learned enough to stay afloat. But in general, I’d rather learn how to stay afloat without feeling panicked as I sink to the bottom of a pool.

Now I’m standing at a different kind of edge. It’s just as safe (mostly but not completely) and just as terrifying (very.) I’m about to start a small business. I decided to do this months ago, but I wasn’t committed to it. This week I decided to commit fully to giving this a try. I might fail, but I have to try.

I still don’t feel like I can commit the kind of time necessary for this. I know someone who has a new baby and works a full time job and is starting a similar business, yet she’s finding the time. But then, she doesn’t have brain fog, chronic pain, chronic fatigue, and a huge number of medical appointments to deal with. Still, I should be able to put in at least a little bit of time.

Ok, I know I’m being a bit vague about the business. That’s partly because I want to maintain my anonymity here but also because it’s really irrelevant. I plan to write and sell a short book (I’ve written the first draft but still have a lot of work to do on it.) I’ll create a blog. And I’ll try to sell the book and other things (maybe an online course?) to people. The key is that I’ll be working my own hours. It will take twice as long for me as it might for someone else, and I have to be ok with that. I might plan to work 3 days this week and manage 5. Or it might end up being only 1. Or none. And that will be ok.

I’m worried about the impact on my benefits, especially social security, at the beginning. But then, I also know that I can’t survive on benefits indefinitely. Right now I’m taking money out of savings each month to make ends meet. That’s fine for now, but one day those savings will run out, and then how will I get by for the next 4 decades? No, it’s better to not have to be on benefits at all, to cover my own expenses with my own business. So I’m going to try.

I face my fears every damn day with these illnesses. I worry about my health in ways most 30-somethings never even consider. It’s time to face a different kind of fear and take the leap. I don’t know how to do this, but maybe I’ll find a way to stay afloat anyway.


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?


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.

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