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?

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.


Knit 1, Purl anything

August 23, 2015

One of the hard parts about being unable to work at a job is feeling like I’m not doing anything substantial. Sure, I do favors for friends and offer advice online and do other intangible things, but it’s rare for me to do anything I can point 2015-07-09 12.01.45to and say “I did that” and be proud of it.

I started knitting as a child. My grandmother made such beautiful things, and she loved knitting so much, that I thought I should try it, too. At the age of 6 I learned the basics. Unfortunately, I never progressed much beyond those basics. Then a few years back a friend taught me to crochet, and I really got the hang of that. Before I knew it, I was making some complex items.

I spend a lot of time sitting on my ass. It’s sort of inevitable when you have chronic fatigue. So while I’m sitting and watching tv, sitting and listening to an audio book, or sitting and talking on the phone, I’m also knitting and crocheting. I always have multiple projects in the works at any given time, and I love creating them. The best part is, I’m making something useful! At the end of each project I have a physical, tangible item that I can say I made, and I can be proud of it. I sell some things and donate others. It feels good to donate hats and scarves to a local homeless shelter and know that I’m helping people.

Last year I taught a friend with chronic illness how to crochet. Like me, she knew how to knit, and wanted to learn something new. Now she feels the same way I do: excited to be able to make something, especially because she can no longer work.

Crocheting and knitting doesn’t solve all of my problems. But it solves one problem. And I’m grateful for that.

What do you do to feel a sense of accomplishment? Please comment below so we can get ideas from each other!


The problem with SSDI’s trial work program

July 28, 2015

When you’re on SSDI (social security disability insurance) the presumption is that your disability prevents you from working. Ok, I get that. But what if you want to return to work part time or full time? Ah, that’s and interesting process.20120809_220808

Everyone gets a different amount of money through SSDI. The formula is based on how much you paid into the system, and that in turn comes from the salary you earned and over how many months you earned it. You might be getting $900 per month or $1800 per month. If you’re on SSDI for more than 2 years then you’re eligible for Medicare, which is health insurance. You’re also more likely to be eligible for other benefits.

Now, what happens if you start doing some work? Well, at a certain point the SSA (Social Security Administration) decides that you’re able to support yourself. That point is a set number. It’s not a percentage of your benefit. Nope. It’s a set number: $1090 per month right now (this can change each year.) So if your benefit is $900 and you start earning $1100 then you lose SSDI and Medicare, but that might be ok with your extra income if you’re earning $1100 every month. You might only earn it occasionally, though (more on that in a bit.) But if your benefit is $1800 and you earn $1100, then you lose SSDI and Medicare and, unless you have unearned income from some source (like a spouse, alimony, or investments) then you’re probably screwed.

That’s how I feel now: screwed. I’m ready to do some small amounts of work, which is exciting in and of itself! I recently earned around $1100! This is very exciting! If it was all in 1 month, though, it would count towards my return to work trial period of 9 months total. Those total 9 months are spread out over 5 years, so I could work for 2 months per year, and still lose my benefits. That’s not good! Luckily for me, it was spread out over 3 months, at an average of under $400 per month. What a relief!

But wait, isn’t there something wrong with the system if I feel relieved to earn less money? Shouldn’t the goal be to get me back to work so that I don’t need benefits?

What if I make more than $1090 per month for 3 months this year? Then what if the same thing happens again next year? I’d stop working altogether so I wouldn’t risk going off benefits. I can’t afford to have 0 income, and I definitely can’t afford to lose my health insurance!

Instead, the system should encourage me to work part time with the hope that I would build up to more part time work or even full time work! The trial work period should only cover a short timeframe, like a certain number of months worked in a 1 or 2 year period. There should be a grace period for Medicare.

But with the current setup, I’m scared to attempt to go back to work. What if I try to work, lose my benefits, and then fail to continue working? Yes, there’s a grace period where I can get back on benefits, but it’s short. And I’m scared. It took me more than 2 years to get on SSDI in the first place. I can’t take a chance on losing it.

And that’s why the system doesn’t work.

Have you felt the same way about SSDI? How do you handle it? Do you hold back on the amount of work you do in order to stay on benefits?


Four years later

July 21, 2015

My physical therapist asked “How does that feel?” It took me a moment to answer, because I had to first block out of my mind the pain in my right wrist, in three toes on my left foot, in four toes on my right foot, and in my left knee. Finally, I had a sense of how my neck felt.

I started this blog 4 years ago today. It was very different then, in so many ways. I was very different.

Back then, I was amazed if 1 or 2 people read my blog each day. Today, I get at least 20-30 readers per day, sometimes over a hundred in a day, plus over 200 who get the blog emailed to them and more who read it in Feedly and other

Where readers have come from in recent months

Where readers have come from in recent months

readers. This blog has had about 33,800 page views…. That’s not much compared to some blogs, but I’m very happy with it. After all, the goal was never to win any popularity contests, but to have a small community. I have a bunch of twitter followers, too. For the first few months I blogged every single day. I still don’t know how I managed that. Now I average 2 posts each week and that feels about right, but I never pressure myself to write and I never worry about keeping any kind of schedule. Best of all, I have an active audience who often comment on what I write and on each other’s comments; that’s what I wanted from the beginning.

And then there’s me. Four years ago today I was working at a job I didn’t particularly like, going in at 9, leaving at 5, and barely surviving it. Every morning I struggled to get ready for working, have to lie down and rest for 20 minutes after my shower just so I’d have the energy to put on clothes. I came home every evening and did nothing but watch tv, eat, and write one blog post. Gone were the days of socializing after work. I started to make mistakes at work. I was always exhausted and I didn’t know why. I was in more pain than ever. I only felt decent when I was on Prednisone, but when I went off that, the fatigue and pain returned full force. So did the gastrointestinal symptoms that had gotten somewhat better while I was on the drug. I had no answers, and my doctors didn’t know what was causing my symptoms or how to help.

Now I have some answers, though probably not all of them. I have taken charge of my life. I no longer turn to doctors for all the answers; I do my own research. I still deal with fatigue and pain, but my gastrointestinal symptoms are almost entirely gone. I understand the workings of my body much better than I did before. I’m not working, or even trying to work, and that takes away so much pressure and stress. On the other hand, it also leads to less financial security, and that does have me worried. I no longer travel, but I have learned to be happy and content where I am. In fact, that’s the biggest change: despite all of my health problems and the other areas of my life they have affected (money, dating, travel, and so much more,) for the first time, I feel good about who I am and about where I am in my life. I am happy and content in a way that I never was before. I take time for introspection more than I did 4 years ago and I have learned more about myself through this long process than I ever would have expected.

If you’ve followed this blog for a while, you’ve watched me struggle to figure out which foods I couldn’t eat, to start a gluten-free diet, to deal with insensitive jerks, to find new doctors, to beg for tests, to cajole for new medications, to deal with dating, to find ways to tell friends and relatives and acquaintances and strangers about my health. You’ve read my political opinions, my frustration, my anger, my joy, my views on so many topics, and my issues with everything from sex to diarrhea. It’s been an interesting journey and I’ve been so grateful to have you here with me as I take it. It’s been rough, too. Still, I see some overall improvement. I get frustrated a lot of the time that the improvement is so slow, and that for every 3 steps forward, I end up taking 2 steps back. Still, I’m grateful for any improvement I can get.

So I’m looking back over these past 4 years and it makes me wonder: where will I be another 4 years from now? Only time will tell, but I’ll do my best to head in a healthy, safe, positive direction.

What about you? How has your situation changed over the past 4 years, 4 months, 4 weeks, or any other time period you want to think about? Are you trying to change direction? Or are you able to forget about the past and be present only in the moment? (I’m still working on that myself.) How are you doing?


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