Wanting to do so much more in a day

November 4, 2018

It’s the constant struggle, isn’t it? Even my healthy friends want to do more than they can in a day. With chronic illness, the struggle is just that much more intensified.

Some days I can’t do anything at all. One day last week all I managed was to change out of my pajamas into a clean set of pajamas around 4pm, to browse Facebook in the morning and to watch tv and movies in the afternoon. Oh, and to eat. That was it.

Other days I do lots. Today I too a walk, went to the gym briefly, answered emails, did a couple random little things at home, wasted too much time online, and did part of my monthly financial review. Not bad! It’s just that I want so badly to do more!

And I never know which days will be which energy levels.

I look at my mother and wish I could keep up with her. She does so much in a day, and I wish I could do the same. I wonder how much I will (or won’t) be able to do when I’m here age?

I see my friends, who manage to do more than me in addition to working full time and raising kids.

It’s not fair to compare. I know that. Of course I know that. But still, it’s hard not to. Because I want to do more! I want to get all of my chores done so that I can do more fun things. I want to do more of the fun things. I’m so tired of doing one fun thing and then being too tired for anything else. I’m trying to make plans with someone this week, and I feel that I can’t see them Wednesday night because I have physical therapy Wednesday afternoon and doing both would be too much. I can’t see them Friday night because I’ve got a meeting Friday afternoon and both would be too much. I want so badly to do 2 things in one day.

So mostly I’m complaining because I’m feeling frustrated today. Because it’s only 3pm and while I’ve done a lot, I want to do more, even as I’m struggling to keep my eyes open. Literally. The sun is shining for the first time all week, and we’re about to get several more days of rain. I want to be outside enjoying it! I want to go out with a friend. I want to clean up my apartment. I want so much but my body has other plans. My body wants to rest. My body isn’t able to do more.

And so I am sitting on the couch, with the laptop on my lap, looking longingly out the window and feeling sorry for myself. It’s not helpful. It’s not productive. But it’s where I’m at. And this blog is called Chronic Rants, after all, so some days I just need to rant a bit.


I wish I could stop my fake smile

July 21, 2018

Even at 12 years old, I knew not to milk my situation. If I exaggerated the pain I was in, cried unnecessarily, or complained too much, it would come back to bite me in the butt later. I was right, of course. Even without all of the theatrics, some doctors and teachers suggested my pain wasn’t real, that I was just trying to get attention. Assholes. The thing is, this idea that I shouldn’t exaggerate anything boomeranged, and soon I was pretending I was ok even when I wasn’t.

Sometimes that’s a good thing. For me, faking it until I make it can help. And I hate having people constantly ask me what’s wrong, so looking like nothing is wrong can help to prevent that.

But then, sometimes it’s not so good.

Today a friend stopped by unexpectedly. I was NOT in a good place. I’ll probably right about that another time, but basically, I’m in rough shape. The pain has been worse lately, and it’s spreading to more parts of my body for some unknown reason. I’m worried about the future. I might have to move out of the apartment that I love. I’m frustrated and overwhelmed and, mostly, very scared.

I started to talk about some of this with my friend. I could feel the start of tears in my eyes. But I didn’t want to get too far down the rabbit hole. If I tried to explain everything, it would just lead me to focus more on the thing I’m trying to get off my mind for a while. So I said I needed to stop talking about it. And a second later we had changed the subject and I found myself smiling.

Now don’t get me wrong, smiling is a good thing, especially when you’re happy. But I wasn’t happy. I was smiling because I am used to plastering that smile on my face, even when I don’t want to. It’s what made the LTD and SSDI trials so hard: I was supposed to let them see how I really felt, and I didn’t know how to do that anymore. After so many years of fake smiles, how could I stop?

Before my friend showed up, I was definitely not smiling. I wasn’t smiling after he left, either. But with him here, I smiled. I thought to myself, “I should stop smiling. He knows I’m scared and in pain and he’ll be here for me. I want to stop.” But I couldn’t.

When my grandmother died just a few years ago, I cried during the funeral. Later, at the shiva (a Jewish tradition where friends and family gather to console the bereaved) I found myself smiling a lot. One relative I didn’t know very well even commented on how great it was that I could focus on the good parts of my grandmother’s life and remain so cheerful. Little did he know. I wasn’t cheerful. It was an act. I was smiling, I had a bounce in my voice, and I was miserable.

My fake smile was helpful today at the grocery store. I looked and acted normal, so no one asked any questions. But with my family and friends, sometimes I want to stop smiling.

If only I knew how.


Feeling too disabled to protest

June 29, 2018

Like in many cities around the country, there will be a big protest in Boston tomorrow, and I won’t be there. Not because I don’t want to be there, but because my health stops me.

At first I thought I might borrow a wheelchair like I did a couple weeks ago for the Pride parade. A friend even said she’d push the chair, and I really appreciated that. That spark of hope lasted for about 45 seconds. Then I remembered the weather forecast.

Until now, we have had surprisingly not-horrible-by-my-standards weather for this time of year. But that ended this week. And tomorrow is supposed to be the worst of them all: 97 degrees and a dew point that the forecasters are calling “oppressive.” The thing is, I struggle when the dew point is what everyone else considers reasonable, so you can imagine how well I do when it’s “oppressive”! For me, that means difficulty breathing, lots of sweating, my already suffering adrenals struggling even more to do their job, more pain than usual, etc. I could end up suffering not just for a day or two. I could have a major health setback. So I can’t go.

I would like to participate in some other substantial way. I can’t donate to funds, since my income doesn’t even support my own expenses.

So I do what I can. I post a lot on social media to make people aware. I don’t know how many people are actually seeing what I post, or how many care, or how many didn’t already know what I’m posting about, but if I get even one person to vote this fall who wouldn’t otherwise, then it’s worth it.

I am trying to humanize the situation for my friends and acquaintances. For most of them, Trump’s and the GOP’s policies are horrible, but don’t affect anyone they know. I’m trying to show them that isn’t true.

Of course, this is harder because I won’t post on social media about being on SSDI or food stamps. My “real” friends know, but I don’t want to share that online. Still, I do talk about how my health insurance is at risk, and the real consequences that could bring for me. I talk about not being about to work, about being queer, about being Jewish, about being a woman, and how these policies will affect me because of those various aspects of myself.

It’s not enough, but it’s a start.

I feel incredibly frustrated and yes, even angry, that I can’t protest tomorrow. Over and over I have had to miss out on these protests. Instead, I am trying to remind myself that maybe what I am doing is helping in some small way.

And in that vein, dear reader, let me ask you to please vote! I know that many of you aren’t in the U.S. but I’m guessing it’s important for you to vote, too. And for those of you in the U.S. with chronic illness, it is especially important for you to look at who is going to be on your ballot this November and what their policies are. Our lives are at risk. We are facing limits to healthcare access, cuts to social security as well as medicare and medicaid, not to mention cuts to food stamps and housing services. There is so much more that I could say, but I will just mention these few things that on their own should worry us all. This November we will see many seats in the House of Representatives as well as the Senate up for grabs, and it’s important to vote in folks who will fight for us, not hurt us. At the same time, many governors’ seats will be voted on, as well as other state and local seats, and those are also super important. If you ever want to learn more about any of this, just let me know and I will be glad to discuss it.

Either way, if you are in the U.S. then put November 6, 2018 on your calendar and be sure to vote! And if you won’t be able to get to your polling station, contact your town or city hall well in advance to get an absentee ballot. You can vote from home!

Even if, like me, you can’t get out to protest in person, you can protest with your ballot. Let’s do this!


Trying to manage when it feels unmanageable

May 7, 2018

Somehow I used to work 45+ hours per week, cook, clean, do errands and chores, and have a social life. How?

Now I feel more overwhelmed than I did then, and I do a lot less. In some ways. In other ways, I suppose I do a lot more, but it’s hard to remember that. Our culture is so wrapped up in “jobs” and “what do you do for work?” and “you must have a lot of free time without a job” that it’s easy to feel like a failure for being overwhelmed without the 9 to 5.

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I think that my mental and emotional tolerance for these kinds of things is way lower than it used to be. But I also know that I do a lot. Dealing with pills and physical therapy exercises take up time. So do meal planning, clothes planning, and all of the other planning around my health issues. Meditation, reading up on symptoms and treatments, and writing this blog also take up time. Then there are the many, many medical appointments. And that’s all before we talk about actual acute symptom management. Not to mention, the extra hours I need to spend in bed and resting on the couch. Put that all together, and that’s my full time job.

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Then there’s my work. It’s not a 9 to 5, but it’s all I can manage. Sometimes, it’s more than I can manage. I sell craft items I make. Or at least, I try to. I have an online coaching business. I just tried to start another online business, but it was too much, and now I’m in the process of shutting it down. I do dog sitting. Not every day, but a little is better than none. It has the advantage of giving me canine company. Right now, this beautiful dog is snoring next to me!

There’s also non-work work. I do a little bit of volunteering for a support group that I’m in. I speak to friends, friends of friends, and friends of friends of friends about health issues and try to assist the best that I can.

On top of all of that, I have typical adult stuff: laundry (which I should actually be doing right now,) grocery shopping, cooking, dishes, cleaning, other errands. This week I finally got a haircut, which was about 3 weeks overdue. I wanted to do it sooner, but between feeling sick, being busy, and simply feeling overwhelmed, I wasn’t able to do it.

I have personal projects. I am currently writing a book about living with chronic illness. I am trying to clean out the clutter in my closets. I’d like to experiment with some new recipes. I want to spend more time reading.

On top of all of that, as if it weren’t already enough, I’d like to socialize more. Over a year ago I left the city and moved out to the suburbs. I want to make more friends out here. I want to spend more time with my old friends. I want to date. After a recent breakup I finally feel ready to date again, but I have no time or bandwidth for it.

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It’s true that I’m less efficient than I used to be. Let me sit in front of the computer to work for an hour, and I will accomplish less than I could have accomplished in an hour 10 years ago. Some of that is illness-related. Some of that is being out of practice. But I am working for that hour and I do get shit done.

It’s just that there’s always more to do than I can manage. And something’s gotta give.

Which is why I am not dating. Which is why I am closing one of the businesses I started. Which is why I don’t socialize nearly as much as I’d like to. Which is why I don’t have much fun in my life these days. Which is why I am stressed out and overwhelmed and feeling like a failure. Sure, I know that I am not a failure. It’s just that sometimes it’s hard to remember that. To really believe it. All I can do is keep remembering how much I do, and strive to eventually get to a place where I’m less overwhelmed.

And for you, dear reader, I want you to know that you’re not alone. In the chronic illness world, we often seem to have 2 modes: doing a lot that never seems to be enough and feeling overwhelmed and stressed out; or doing very little “productive” stuff while we rest and take care of our health and feel guilty about not doing enough.  But we shouldn’t feel guilty. We are doing the best we can to take care of ourselves. Some folks are even taking care of families as well. It’s hard. Fucking hard. And we deserve praise and congratulations for everything we work so hard to do, even when it’s not as much as what we want to do. So give yourself a figurative pat on the back. And then go do something FUN and don’t feel guilty about it. You deserve it.

Note: I have written many times about being on benefits, so some of you are probably wondering why I’m busting my butt with multiple jobs. That is because when I add up social security, food stamps (SNAP), and fuel assistance, I still fall far short of what I need to pay my expenses. I live in affordable housing and my rent is currently over 90% of my social security income. Then I need to pay for utilities, car insurance, gas, car maintenance, medical treatments that aren’t covered by insurance, and maybe once a month I might even go out for a cheap meal. On top of all of that, I am nervous about the future state of benefits in this country, and don’t want to rely on them. I would much rather earn my own way and be independent of them. For now my goal is to earn enough to support myself with benefits. Down the road I would like to get off of them, though I know that’s a rare and difficult thing to accomplish.