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.


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!


How strange to bleed

August 18, 2015

Every time I have a “normal” injury, I’m surprised to bleed. You see, most of my symptoms are invisible, or nearly invisible. I might get pale or shaky, but that’s usually it.

Saturday night was a bad night. Horrible nausea. Diarrhea. Body temperature fluctuations. I was mi2015-08-18 18.20.58serable.

Sunday night wasn’t as bad as Saturday, but it wasn’t pleasant. More Diarrhea. More body temperature changes. Less-severe-but-still-there nausea.

But Monday night was much better. I felt ok! So I decided to take a short walk. I didn’t want to push myself or push my luck, but I needed to get out of the house a bit. I made it about two blocks when my ankle turned and down I went. In the end I was fine, but what initially struck me was the sight of the big scrape on my leg. I’m so used to the invisibility of my symptoms, I wasn’t sure what to make of it. On the way home, I got a couple of funny looks. People could see the blood on my leg. Usually I suffer in silence and no one knows that anything is wrong. This time they knew.

It wasn’t a big deal. There was only a little blood. It stung last night, but now it seems ok. You can even see that in the picture, taken 23 hours later, it’s not so bad. And yet, it looks a lot worse than what I usually go through.

How odd.


Even when they’re wrong, it’s still my fault

August 12, 2015

Let’s face it, sometimes customer service representatives aren’t trained all that well. I once had one of those jobs, and I mostly learned what to do through trial and error. I’m sure some callers were annoyed at my inability to immediately solve their problems, but since I was offering technical support on phones, it wasn’t a big deal if something wen8-12-2015 6-10-09 PMt wrong.

Until I got really sick, most of my experience with calling customer support fell into those kinds of non-essential categories. Maybe the cable bill would be screwed up or I wouldn’t have internet access for two days. This was really irritating, but I knew it would eventually be fixed. I also knew that I’d receive reparations for my hassle.

Unfortunately, it doesn’t work that way with government entities. If they get something wrong, it’s still considered my fault. A few weeks ago I wrong about my frustration with SSDI benefits, mostly based on a phone call with a representation at the SSA (Social Security Administration.) I’d read everything, but it’s confusing, so when she corrected me, I assumed she was right. I should have known better. Thankfully, reader StuckInTexas commented and corrected me. But what else are they getting wrong?

I called the SSA 4 times to report earnings from a bit of work I’d done. It was handled 4 different ways, including 1 representative who was so confused, I just gave up and hung up the phone.

Yesterday I called Medicare to ask if a certain treatment was covered. They said yes, but only under certain circumstances. Those circumstances weren’t 100% clear, and when I asked questions, they just reread the same passage. To me it sounds like what I need will be covered, but they wouldn’t confirm that. They were happy to repeat, though, that it’s my responsibility to make sure it’s covered. How is that logical? I can understand that it’s my responsibility to call and check, but if I call and they refuse to confirm, then what? Do they really expect patients to move forward with appointments and treatments without knowing if they’re covered? Obviously that’s sometimes necessary, but often it isn’t.

MassHealth, our state Medicaid, was different. She simply said she couldn’t tell me and then she passed the buck: she said my doctor had to call the provider line. I can only assume the representatives on that line are better trained and will be able to answer the question. When I asked about covering a TENS unit, for example, she didn’t know what it was. When I spelled it, she still didn’t know. Medicare doesn’t cover it, but at least that representative knew what I was talking about. I think. Maybe she didn’t. Maybe they really do cover it. I don’t know!!

Yesterday I got a long form in the mail from the SSA. They want me to fill out all earnings I received since I went on SSDI. This was triggered by the earnings I recently reported, but I thought that only happened if the earnings were $750 or higher in one month. My earnings weren’t over $400! So now what should I do? I don’t want to have to fill out the form, but even more, I don’t want to be put in the category of people they “observe” unnecessarily. I want to call the SSA to check on this, but I’m pretty sure that if I call 5 times and speak to 5 different people, I’ll get 5 different answers! And if I do get 5 different answers, they’ll still say it’s my responsibility to handle this correctly. If I get 1 answer from everyone and it’s wrong, then the SSA will still say it’s my fault, even if I do exactly what they tell me to do. Don’t believe me? Look at what happened to these disabled folks who were on SSI.

I will take responsibility for my own mistakes. But I think these big government entities should do the same. What do they really expect from us? If they can’t manage to properly train their own employees in these complicated rules and regulations, is it reasonable to expect the general population to understand these same complicated rules and regulations? I don’t think so.

Have you encountered anything like this? How do you handle it? And if you’ve had to report income while on SSDI, did you have to fill out tons of paperwork? Please comment below so we can help each other out!