When everything goes wrong

January 17, 2017

Lately I feel like I’ve been working all the time. But I don’t have a job. So what the hell is going on?

I had to sit down and think about it, but I think I’ve figured it out. It’s things like the last 24 hours:

  • I got my new laptop, opened it, started it, and found a problem. After an hour on the phone with tech support I was told the laptop needs to be replaced. But the office that handles that was closed for the holiday, so I had to call back today to arrange that. They put in the order and someone will be in touch with me within 48 hours. So I STILL don’t have a working laptop and I’m STILL spending hours doing things that should take minutes. Like the super-long message I was writing, that was almost done, and that was lost when my laptop crashed for the millionth time a few minutes ago.
  • My new apartment is still a mess. Since I can’t set up my laptop, I might as well put together some of the Ikea furniture. I opened the box last night, make sure I had all the pieces, and reviewed the instructions. Totally doable. Today while I was on hold for the SSA (I’ll get to that in a minute) I figured I might as well put it together. There were 8 steps. After 4 steps I was in pain and was going to take a break, but I was excited to be making progress. Everything else is a mess. I wanted to at least get one thing right! So I did step 5. And then steps 6 and 7. I did half of step 8 when the phone was answered. I spoke to the guy for a while, then returned to the furniture. I just had to put in 3 screws! Yay! Except the last 2 wouldn’t go in. I played around and found the problem: 2 of the holes weren’t drilled right. I can’t finish it. I need to exchange the piece. Ergh!
  • I had a simple question about my social security disability. I didn’t have the number for my new local office so I called the main number. I was on hold for 45 minutes, but at least I was able to almost put together some Ikea furniture in that time. Finally I spoke to someone who couldn’t answer my simple question. He gave me another number. They could definitely help. I was only on hold 5-10 minutes before I spoke to someone who gave me another number. This time I’d get answer. And I actually did. It took well over an hour, but I got an answer to my simple question. Why can’t the SSA’s folks at the main line answer such simple questions? Still, now I have to find a way to get the paperwork done without a reliable computer. Hmm.

No wonder I always feel so busy! I’m trying to move into a new apartment, but I can’t make progress on setting things up. I have digital files scattered everyplace. Things are a mess, and it makes my brain feel messy.

This isn’t so bad. I know it. These are pretty simple problems. A messy home is ok. A lack of computer for 6 weeks sucks, but isn’t the end of the world. Spending hours on the phone (if you include the computer stuff and SSA) to not have my problems fully resolved sucks, but it’s survivable. Still, when I add it all up, it’s no wonder I feel like I have a job, like I’m always working. If only I was getting paid for this “work”!

Now the key is to find ways to relax. To de-stress. Because stress is bad for chronic illness and I’ve been feeling it. I slept a lot last night. Too much. And I woke up tired. This is taking its toll, and I need to maintain my health. I intentionally blocked out 3 days this week as “me” days. Yesterday was the first. I didn’t get as much done as I would have liked (setting up the new laptop was on my list) but I made some progress. Today I made more (even though the furniture wasn’t fully built.) I just have to remember that it’s a process. And then I need to take time to relax.

Which means it’s now time for a hot shower, a long walk, and a good book. Then I’m off to my new mah jong group so I can use my brain in a better way.

What do you do when you feel overwhelmed and you need to relax? What are your favorite go-tos?


What should I tell my neighbors?

January 12, 2017

Usually disclosing my health status isn’t a problem for me. Usually. For some reason, this time it feels different.

After writing this blog for a while I realized that talking about this stuff felt freeing. I needed that. So I began to open up in real life. Bit by bit I felt the difference. The more I was open, the better it felt. It wasn’t about making an announcement, but simply not hiding anything. From time to time I’d meet someone new and I’d mention I had “health issues” and the rest would come out naturally. Easy.

Then a few weeks ago I moved. Normally that wouldn’t change a whole lot, but this is a very friendly and huge apartment complex. I have already met many of my neighbors. Sometimes we say a quick hello. Sometimes I pet their dog but never learn their name. Sometimes we exchange pleasantries. But I’ve had real conversations with a few of them. I love it! It’s so great to be friendly with my neighbors. Of course, the downside is that it means I have a lot to share with them and I’m not sure how to do it.

One neighbor offered me food. I said thank you, it looks great, but I have Celiac. That opened up the conversation around Celiac, but not around my other health problems. It was a start. Another neighbor talked about the benefits of living on the second floor, so I mentioned knee pain that prevents me from doing a lot of stairs. Now she knows about my knee pain, but not about the rest.

Another neighbor was talking about dating, and we compared online dating apps we’ve tried. I mentioned dating women. Coming out as bi is a lot like coming out as disabled or having a chronic illness. I feel like I shouldn’t have to announce it, but people assume I’m straight/healthy if I don’t say anything.

So far, all of these conversations have gone well. There’s been no negativity. Still, as I’m making many new friends and acquaintances all at once, I’m wondering how much to share.

I have already decided not to tell anyone that I’m in one of the “affordable housing” units. Or that I’m on disability benefits. Or that I’m on food stamps. Those things all come with assumptions and stereotypes that I don’t want to deal with right now. If I become friends with someone then I might tell them, but until then, I’m keeping quiet. Besides, even if one person is cool with it, they might be a gossip who tells others, and that would be a problem.

So I’m not telling anyone about my financial arrangements, but that doesn’t mean I can’t tell them about my health. The two aren’t always related. I was disabled to a lesser extent back when I was working a full time job.

This isn’t something I want to hide. But I also don’t want to be known as “the sick one” or “the one who is always complaining about her health” – we all know that even when something is simply stated as fact it’s often heard as a complaint – or “the one with all those health problems.” I want people to know me as me. The problem is, these health problems are part of me.

Also, I need to be realistic. At some point I will ask a neighbor to help me with something that a “healthy” person can typically do, and they will wonder what’s wrong with me. I might as well get ahead of that.

Disclosure has to be decided in the moment, on a case by case basis. I know that. Still, it’s hard not to think about how I should approach this. Maybe I think too much, but it’s served me well so far. And so I am being very careful with my approach. Until the day I get fed up and just start announcing it to everyone, because I know that sooner or later, that will happen too.

Have you ever found yourself making a lot of new friends at once, but not in a single day? How do you handle whether or not to disclose, and how much detail to share?


Please stop adding to my stress

January 7, 2017

Over the years I’ve learned to control my stress levels. In addition to the obvious emotional benefits, it does wonders for my physical health. Stress exacerbates everything, so I’m happy to avoid it. Lately, though, it just keeps piling on.

I moved to a new apartment 2 weeks ago. I absolutely love it here! The move was less stressful than I would have thought, and I unpacked very quickly. Unfortunately, while the boxes are gone, the place is a mess. There are papers in various places and clutter on the counter. To a stranger it doesn’t look like I just moved in (except for the empty walls) – it simply looks like I’m unorganized. And the clutter is getting to me. The mess makes my mind feel messy.

On top of the clutter, there are so many little things to do! I need to fill out forms for fuel assistance in my new town, get on local mailing lists and off of my old mailing lists, and a dozen other things. And of course, I need to decorate, which feels unnatural to me. It takes hours to research things I want and then, just when I make my decisions, I find out the thing is out of stock.

Those wouldn’t bother me at all, though, if it wasn’t for the rest. My laptop has been on the fritz for over a month! Even the repair guy has given up. It’s time for a new one, even though that machine was only two years old. So I need to research a new computer. I’m not sure what to get and I’m wracked with insecurity – what if I get another crappy machine, despite researching them thoroughly? And of course, that’s money I hadn’t planned to spend, too.

My Tivo is pretty new. I planned out that purchase last summer and it was a smart move. I have a cheap antenna that I bought online and now I can record all of my favorite shows on the channels I get over the airwaves – no monthly fees! But a few days ago the Tivo began to buzz. It’s a strange, annoying sound. The quiet of my new home is ruined by this constant buzzing. When nothing is set to record I unplug it, but that’s annoying and not something I want to do permanently. I need to figure out how to fix it, or else see if it can be replaced under the warranty.

It’s the end of the year, which means the federal government wants to know about my income for the last year, not just for taxes, but for my benefits. Oy! That would be easy if my laptop was working, but without it.

And because I moved, other benefits offices want information about my finances, too. How can I tell them about my utility bills when I haven’t received any yet? I just moved in!

I do little things to earn some money, but they all require the computer. Damn that laptop for breaking just as I was getting ready to move!

I was going to try online dating, actually, but I need a working laptop for that.

Because of the move I didn’t schedule any doctor appointments for the entire month of December. It was lovely. But now I’m making up for it. I had 2 yesterday (Friday.) I have another Monday. There are several more over the next few weeks, too. I need to start a medication on Monday that will make me feel like crap for about 2 weeks, but I already put it off longer than I should.

As I was telling someone today what I planned to buy for new furniture (cheap, but nice looking!) she tried to talk me out of it for no good reason. I almost lost my temper. I’m stressed out by trying to juggle way too many balls in the air. It’s just too much! I don’t need someone disagreeing with me over something so basic. Why mess up my plans? I know she didn’t mean any harm, but I just don’t have it in me to deal with anything new. I can’t handle more.

These thing are all so little, but they’re just too much. Just like 1 ball of yarn is light, but 50 weighs too much for me to carry. It too damn much.

And yet I’m super lucky. My awesome parents are buying a lot of my new apartment decorations. Several relatives gave me Amazon gift cards as housewarming gifts so I can buy more. I have enough savings to buy a laptop. I can afford all of this. I have the time available to work through it all. Ok, I don’t really have the energy for it, but I’m getting there. I’m so lucky.

But I’m still stressed.

And it’s affecting my health.

How do you handle it when you have too many balls in the air? How do you relax when 50 different things are calling for your attention? Please comment below and let’s share some ideas!


Pups, trees, and better health

December 27, 2016

img_20161223_091955I grew up in a suburb, then went to college in a quiet rural area. But my university had around 17,000 undergraduate students, plus graduate students, faculty, and staff. It was a city unto itself. After college I moved to a city, then a different city for graduate school, then several more moves within cities. Which is why it feels so odd to be living in the suburbs again.

Five short days ago I moved to a suburb that’s a lot quieter and smaller than the one I grew up in. This will be a huge adjustment, but overall I think it will be good. Since this blog is about living with a chronic illness, here are a few ways I think it will be good for my health:

  • This complex allows dogs and there are dogs everywhere. I’ve pet many in just these few short days, including my neighbor’s new puppy! Petting dogs always makes me feel better, no matter what. And soon I’ll have one of my own!
  • Check out the view from my desk at the top of this post. It’s not as great as my old view, but from my window I can see so many trees! From my apartment I can take a walk along a path through woods, something I used to have to drive to do. This will do wonders for my emotional health.
  • It’s so quiet here. I’ve been sleeping better than I thought was possible. When I’m awake, it’s peaceful and relaxing. It’s strange, and a huge adjustment, but I find it calming and lovely.
  • No. More. Stairs. I’m on the first floor and there are no stairs to get into the building. This is amazing!
  • Easy parking. I used to feel stressed out about finding a parking space. Then I would have to carry things from my car, sometimes several blocks, just to get to my building (before dealing with the stairs.) Now the tiny parking lot is by my front door, and I never have to park very far. Bringing in groceries today was so easy.
  • Laundry is now in my unit. The last time I had that was when I lived with my parents. My guess is that laundry won’t be fatiguing anymore.
  • No traffic. I have to do a lot more driving (I can no longer walk to things or take public transportation,) but it’s much less stressful.
  • Less pollution. ‘nuf said.
  • It’s a smaller apartment. There are downsides to that, and I’m not thrilled, but I also know that on the days I’m in too much pain to walk, having a smaller apartment will be super helpful.

In time, I’m sure I will find more ways this move will be beneficial to my health. In the meantime, I’m excited to enjoy these new benefits. Now excuse me while I go unpack some more boxes….


I’m moving!

December 21, 2016

I can’t believe that in 24 hours I will be living in a new apartment. I have been in my current place for over 10 years – much longer than I’ve been writing the hundreds of posts on this blog. Wow!

A lot has happened in the last 10 years and maybe I’ll look back over them another time. But at this moment, I’m looking forward.

I’m looking forward to my gorgeous new kitchen with the island in the middle, granite counters, beautiful appliances, and open feel. I’m looking forward to the comfortable living room, the lovely patio (my first ever outdoor space!), and my 2 bedroom closets. I’m looking forward to the apartment complex’s gym and book club. I’m looking forward to off street parking. I’m looking forward to meeting my new neighbors and their dogs. I’m looking forward to getting a dog of my own! I’m looking forward to living in a place with no stairs! I’m looking forward to peace and quiet and a view of trees.

Yes, there are things I’ll miss about my old place. The many windows, lovely open views, and easy walking to lots of great things will be missed. I’ll miss being able to take the T (our subway) whenever I want to (and feel up to it.) I’ll miss having a lot of activity around. I’ll miss having friends without cars visit me (the new place requires a car.)

There are things I’ll miss but so many more that I’m looking forward to, and I’m focused on those.

I’m also excited and proud of myself that I managed to prepare without getting *too* stressed out or fatigued or pained. Thanks to some new supplements I’m feeling pretty good, I’ve been careful to pace myself, and my wonderful mother has been incredibly helpful. Not only did she come over twice to pack boxes in the last month, but now she’s staying over at my place for the two nights before the move to help me with final preparations. She’s an angel, and I’m super lucky to have her in my life.

And with that, I’m signing off for a few days. Hopefully I’ll have internet access at the new place right away (but the cable company has been difficult about that, so we’ll see.) I’ll be busy alternating between unpacking boxes and getting lots of rest.

See you on the other side!


Trying to do it “all” with chronic illnesses

December 14, 2016

It feels like everything is hard with a chronic illness. Pain, fatigue, and other symptoms affect us in ways most people don’t think about.

Walking is harder. Sitting is harder. Reading is harder. Cooking is harder. Planning is a hell of a lot harder.

Last year I wrote down goals for earning money in 2016. I didn’t succeed, but they put me on a better path than I would have otherwise been on. So I did it again for 2017. And then I did something else: I wrote down my personal goals. I’ve never done that before and it was fascinating.

I wrote down everything big. And I realized how much harder it will all be than I would have thought just a few years ago.

I wrote down the book I want to write, blogging here, improving my health including doing regular physical therapy and other exercise, getting a dog (yay!), joining a dating site (well, maybe), making new single friends (most of my friends are coupled off at this point) through attending meetup groups, and some other things I’ll be telling you about soon.

It was a really great exercise and I recommend everyone do it. It puts everything into perspective. Doing this forced me to seriously consider everything I want to do, then narrow that down to what I want most. Then I broke that down into what I need to do to make it happen. For example, in order to make new friends, I need to join some meetup groups and actually attend, instead of my usual thing of joining but then staying home. (If you don’t know about meetup.com and you want to get out of the house more, check it out! I can’t do the physical activity groups like hiking or playing frisbee anymore, so I’m joining knitting and board game groups.) And I wrote down how many times a day I’ll do physical therapy, how many times a week I’ll check in on dating sites, and so on.

And then I looked at my list, added up the time required for each thing, and thought, “No wonder I’m so overwhelmed and never feel like I have enough time to get things done!” It was great! I mean, it sucked, because I have to give up something that’s important to me. But at least now I understand that it wasn’t that I was unorganized, just that I was trying to do more than my health allows. I have fewer hours, and I need to accept that. Sure, I’ve got a lot less on my list than I would if I was healthy, but it’s still too much. I can’t go right from a date to taking a walk – I need to rest in between. I can’t make new friends unless I have the energy to go out with them, and that takes energy from other activities. I still want to hang out with my current friends, knit, read, and do other things. Plus, showering, getting dressed, laundry, washing dishes, and even eating take up a lot of energy. But I don’t have to tell you that.

And of course, I can’t assume that any of my plans will stick. I could plan to do 3 hours of stuff every Monday, and some Mondays I’ll be able to do more but others I’ll have to less or maybe nothing at all. It’s completely unpredictable.

So that’s how I find myself looking at my list of personal goals for 2017, feeling keenly aware of the ways that everything is just a bit harder with chronic illnesses.

I don’t have the answers yet, but at least I can see the problem clearly. Something’s gotta give. Ok. I accept that. Now I just need to find the answers.

What about you? Do you set personal goals? How do you find ways to fit everything in or pare down?


The power of a laptop

December 9, 2016

img_20161129_183012

Maybe it wouldn’t bother me if I was out of the house more. It certainly could be a whole lot worse. But no matter how you look at it, I miss my laptop.

I’m lucky that I had access to a computer at a young age. When the pain in my wrists was so bad that I couldn’t hold a pen, I could still usually type with a few fingers on my left hand. It was slow, but it allowed me to more or less keep up in my classes.

Then the internet appeared. That was interesting. Email was fun for sending letters to my grandparents (yes, my awesome grandfather was an early adopter!) And slowly, the computer became more integrated in my everyday life.

Now I’m like many others: email, Facebook, and a lot of other web sites are daily activities. But I use my laptop for so much more. My to do list, my health records, family photos, my daily symptom log, my finances, and a lot more is on that machine. Quite a lot more. I’m on it every day.

And on the days I don’t feel up to leaving the house, it’s my connection to the outside world. I see what my friends are doing on Facebook. I connect with other chronic illness folks on Twitter, I email my mom.

Some of this can be done on my smartphone, which I’m also very lucky to have. Some of it can’t. And some of it can theoretically be done, but not by me. I can do lots of typing on a laptop but I can’t do that same typing on a tiny smartphone touch keyboard. There’s a text-to-speech feature, but that’s not the same. For me, it doesn’t work at well.

And that’s why I’ve wanted to write a post all week but I’ve been waiting. I can’t imagine trying to do this on my phone!

A week ago I was having a perfectly fine evening when I got that image above. Twice.

Not good!

Thanks to sage advice from a couple of friends, I brought my laptop in to a repair shop. My hard drive was failing. Ugh.

I bought a new hard drive, which has now been installed. They’re just transferring all of my backed up files, and then hopefully in a few more days I’ll have my laptop back!

For now I’m using my previous laptop. It’s not in great shape. I can’t do much on it, but at least I have a browser. A connection to the outside world. It’s not perfect, but it’s something.

I’ll have a lot of work to do next week. I need to reinstall all sorts of software on my laptop. But that’s ok. At least I’ll have my baby back.

And then I can breath easier. Relax. And finally put my latest blood test results into my personal tracking spreadsheet.

P.S. If you’re a computer user, make sure you back up your files! I’m so glad I did!


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