Wanting and despising pity

February 17, 2018

I’ve been off my feet for the last week, more or less. Some days I could barely hobble around my apartment, even with crutches or a cane. Other days I could walk around the apartment fine, but putting on shoes was incredibly painful. This doesn’t happen often, but it’s happened many times over the last 13 years.

The difference is that this time, there are new people in my life who aren’t familiar with it.

More than once, a neighbor, a friend, and my new girlfriend all noticed me using crutches or limping, and they offered sympathy. Some were clearly pitying me as well.

Most days I despise pity. Instead of pity, I wish people would offer sympathy. And I wish they would do things to help. Hold open a door. Don’t come near me when they’re sick. Call their legislators and ask them to vote against the new bill that guts the Americans with Disabilities Act (ADA). (Seriously, call them! The bill is described here and you can find your senator’s contact info here.) Those things are helpful. But not pity. Pity sucks, and it’s dehumanizing. It means they’re seeing me as a set of symptoms instead of as a whole person.

And let’s be honest, we are taught by society that we shouldn’t like pity. We should be strong and resilient, blah blah blah.

But some days, that’s just how I feel. Some days, life sucks and I want more than sympathy, I want pity! Like when my feet hurt so badly I can barely hobble to the bathroom. Like when the pain is so bad, I can’t even wear socks. Like when I have to cancel plans so that I can stay home and feel like crap. Sympathy is good. Usually that’s enough. But every now and then, when I’m feeling especially sorry for myself, I also want pity from others.

Now here’s the thing: I talk to people about being in pain. Because I’m in pain. Every day. It’s a part of my life. I don’t dwell on it, and I only complain on the worse days, but I mention it a lot. And sometimes, people offer pity, even though that’s not at all what I’m looking for. And I hate it.

Then again, sometimes I bring it up because I DO want some sort of acknowledgement. I hate to admit it, but it’s true. Sometimes, I want people to know I’m in pain, to feel bad about it, to offer me some sympathy, and maybe to offer help with something I struggle with.

It’s a hard line to toe. I want to be able to say that I never want to mention it, I want it to be ignored, I want to be treated like everyone else. I want to say that, but it’s not true. Because the truth is, I’m human. And sometimes we humans want a little sympathy and support. Some days we even want pity!

Like I said before, society tells us we shouldn’t want pity. We should be strong and inspirational. Others should be able to point to us and say, “Look how amazing she is! If she can do what she does despite her health problems, I have no reason to complain.” Talk about dehumanizing! I’m a real person. I’m a whole person. I laugh and cry, feel optimistic and pessimistic, go out with friends and stay home feeling sick, do laundry and errands and cooking and other mundane chores. I’m more than a set of symptoms. I have feelings.

And yes, sometimes those feelings lead me to wanting pity.

I’m not proud of that, but I’m not going to be ashamed of it anymore, either.

I don’t live in the land of pity. I know that would not be healthy for me. But if a few days here and there I feel this way, what’s so wrong with that? I can’t compel someone to pity me. More than that, I know I’d be pissed if a bunch of people started doing it. But if for a few days I’d like my mother or a friend to pity me a bit, to offer condolences for what I’m dealing with, then so be it!

I won’t ask for pity. And most days I will still despise it. But if every now and then I want it, that’s ok.

Is it just me? Do you ever feel this way? Do you feel guilty for wanting pity? How do you handle it? Please share in the comments!

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The circular reasoning of spending money to get off benefits

February 4, 2018

I was always one of the few people who didn’t stress about money. I was lucky.

My parents raised me in a comfortable home, where we never worried about the basics. We didn’t take a lot of fancy trips, and my mom didn’t wear a lot of expensive jewelry. My parents bought new cars like Camrys – new, but not luxury. I got an allowance every week. It wasn’t huge, I saved it. I saved a lot. I saved my babysitting money. I saved my summer job money. I spent some too, but I saved more than I spent. By the time I went to college, I had decent savings.

My parents paid for college. I got a fellowship for my first year of grad school, then worked two jobs to pay for the next year. I never had any debt. I worked in nonprofit, so I didn’t earn a lot, but I lived inexpensively for the most part, and it all worked out.

Until I became too sick to work. That changed everything.

Suddenly, I worried about every dollar I spent because I knew I couldn’t earn more. I also knew that my benefits didn’t quite cover my expenses. I was taking money out of savings to make up the difference, and how long could that last? Thank goodness for my savings!

And then my health started to improve. I felt I could work a little bit. Not enough for an office job. Not enough for a typical work-from-home job. I couldn’t predict which days I would feel up to working. Or which weeks I wouldn’t be able to work at all. So I started my own business.

Things didn’t go great. I made some money, but nothing consistent. Worse, there was no way to earn more without putting in more hours, and that was impossible. I burned out fast.

I decided it was time to try a different type of business. I had thought about it a couple years ago, but discounted it for a few reasons. For one, it seemed less fun. For another, it required taking a decent amount of money out of savings and risking losing it. But now, I don’t have a lot of options, so I have to try.

Even more than risking that money on the business, I’m going to hire a coach! And the coach isn’t cheap. Still, if I’m going to do it, I should do it right, right?

This is a decent amount of money coming out of my savings. I don’t think I would have loved it at any time in my life, but right now especially, it makes me very nervous. I need this money!

On the other hand, what am I risking? This money in my savings could cover me for  year, as long as I have my other benefits. But for various reasons, I am about to lose some of my benefits (fuel assistance, utility assistance, food stamps/SNAP.) So this money would cover me for less than a year, in addition to social security. I could lose a year’s worth of non-rent expenses.

That’s the risk. But what about the reward? If this works, I could earn enough to get off of benefits altogether! I could support myself without having to work full time. I would do the work from home (or from anywhere, as long as I have a laptop and internet connection) and make a full time income. It would be amazing!

That’s what I’m holding on to. That hope that maybe, just maybe, this could work.

I know it’s a long shot. Very few people manage to get off of benefits. I could even earn enough to lose my benefits without earning enough to support myself, which is the worst-case scenario (and the one I’m going to be careful to avoid.)

I am supposed to pay the coach today, and I’m nervous as hell. I keep holding off. It’s A LOT of money. But on the other hand, it isn’t that much money. And there’s the rub. If I was working, it wouldn’t feel like all that much. Yes, it’s a lot (thousands of dollars), but I’d be earning, and I don’t have debt. It only feels like so much because I can’t earn more. But ironically, I need to spend it so that I have a chance at earning more, even though it’s my fear of not being able to earn it back that’s stopping me from spending it in the first place.

I have been wrestling with this decision for a week. Every time I convince myself to do it, I chicken out. But tomorrow is it. The final deadline. Because at some point, the coach needs to fill in this slot in her schedule, and I need to sleep better at night without worrying about this.

And who knows? Maybe, just maybe, it could work…..

Do you have these same kinds of feelings about spending money, even when it feels necessary or beneficial in the long run? How do you handle the complicated emotions it brings up?

P.S. This isn’t a get-rich-quick scheme. My goal would be to earn back everything I spent by the end of this year, to make a profit next year, and to hopefully be off benefits the year after that. If this works, I’ll be happy to tell you all about it.


Resenting my overwhelm

January 30, 2018

We all know the stereotype: the lazy person on benefits, who spends all day watching tv and eating junk food because they don’t feel like working.

We all know the reality: nothing like that at all.

Still, in general I find that even though I’m busy, I can manage. Some days I don’t feel up to doing as much, but it more or less works out. Sort of. Well, close enough.

But sometimes I feel overwhelmed by everything. Driving 6 hours in one week for various doctor appointments. Physical therapy at home. Eating the right foods in the right amounts at the right times. Getting tests run. Exercising. Feeling guilty whenever I don’t do one of those things. Always trying. Always running. Sometimes even finding time for family or friends. But not nearly often enough. Seeing notes about things I want to do, and wishing I had time for them.

And I should have time for them, shouldn’t I?

I hate this feeling. I don’t even have a full time job, damn it! Why am I so overwhelmed?

Of course, we all know why. It’s because I do have a job. Sure, I’m not getting paid for it, but my health is a big job, and it’s never ending. Add to that, I don’t have as many “good” hours in a day as my healthier friends do. I’m lucky to start doing anything “productive” by 11am. By dinner time, I am done.

Sometimes I do things practically nonstop in those intervening hours. Sometimes I can barely manage to feed myself. It all depends on the day.

And that unpredictability only adds to the overwhelm. My calendar might look good, but when I suddenly lose a day of productivity because I feel like crap, and everything else has to get rearranged, then it’s suddenly way too crowded. I build in “rest” days, but I can’t predict. My body might decide it can’t manage anything on Tuesday, even though my “rest” day isn’t until Thursday. Or I might rest on Thursday and feel like I need still more rest on Friday. Or sometimes the “rest” days are perfect, and if I schedule less and then feel ok, than I simply do less, instead of using the “extra” time to get more done.

My new goal for 2018 is to take days to take days off, and so far it’s helping. But it’s not enough.

And the funny thing is, next week I might sleep better or do something fun, and suddenly I will feel like everything is under control. But this feeling of being overwhelmed will come back. It always does. And with it, comes an uncomfortable guilt. Because after all, it’s not like I have a full time job.

Note: I would be the first to support a friend who feels this way. I would tell them that of course they have a job, and they are completely justified to be so overwhelmed. So I am repeating to myself what I know I would be saying to someone else. And it helps.


Please don’t take away my physical therapy

January 25, 2018

For most of my life, my posture has been lousy. My shoulders hunch forward, I never sit with my legs down properly (in large part because I’m very short, and I can’t comfortably sit that way, since my feet won’t be flat on the floor), and of course, there’s the scoliosis. Two different forms for scoliosis, actually. Thanks to all of that, and a doctor who majorly screwed up (she measured my legs wrong, and for years I wore a lift on the WRONG FOOT!) I have a lot of neck and back pain. And that’s even before you consider my mis-aligned kneecaps, which have worn away most of the cartiladge on the outer sides of my knees.

So you won’t be surprised to learn that I have been in physical therapy for neck and back pain a bunch of times over the years. I’m doing it now, too. But this time it’s really helping. Probably because I’m not getting cut off after a few short months, like all of the previous times.

If you’ve ever done physical therapy, I’m guessing this will sound familiar. I would go in 1-2 times per week for a few months, be given exercises to do at home each time, and then at the end, told that if I go home and do the exercises, I’ll be fine. And when I wasn’t fine, when I came back for more help, I was treated like I failed.

And yes, I admit that I wasn’t as consistent with the exercises as I should have been. But even so, it felt like something else was going on.

That brings us to 2017 when, for the first time in my life, I went to physical therapy appointments for the entire year. Sometimes I would go 2 or 3 weeks in a row. Sometimes I would miss 2-3 weeks. But always, I went back. In between, I did my exercises at home. Sometimes I was consistent and sometimes I wasn’t, but I always tried.

And it helped. A lot! So you can imagine my disappointment when I went to physical therapy yesterday to be told that Medicare has lowered its coverage limit.

Oh boy.

On the bright side, this might not effect me. She had checked and last year I would have just squeaked by under the 2018 limit. Still, it’s disconcerting. We will need to be careful.

We talked about having me come in less often. Or maybe skipping a few weeks here and there. Or maybe coming in for shorter appointments, since the limit is on the dollar amount covered, not the number of visits.

Not for the first time (not even the only time that day!) I came up against the problem of having to manage my health in the face of insurance limits.

On the one hand, this is totally fair. After all, they need to set limits, right? On the other hand, this is my health, and isn’t the whole point of paying into the system so that it will cover me when I need it to? What good is it if it won’t. I’m not the cheapest person on the insurance’s rolls, but I’m far from the most expensive. And damn it, I want my physical therapy! Without physical therapy, my pain and posture will get worse and that will harm me in a lot of other ways, limiting my ability to work, meaning I will need even more benefits.

After all, I am losing a bunch of my benefits this year (yeah, that’s a topic for another post) because I earned more last year. Don’t they want to keep me off those benefits? They should want me to be healthy, if only for financial reasons. They should consider that more physical therapy will actually save the system money in the long run.

But no one worries about that. They certainly don’t worry about the human being behind the numbers. The human being who simply wants to be in less pain, who wants to stick with the thing that works, who tries so hard to feel better every single day.

My physical therapist warned me that Medicare changes its limits every year, and she implied that future changes would not be in my favor. I am not surprised. But I am horribly, sadly, painfully disappointed.


Feeling fatigue frustration

January 20, 2018

Fatigue is my most frustrating symptom. Unlike the others, I can’t push through even small amounts of it. Unlike the others, it feels vague and a little unreal. And it stops me from doing so much.

My pain has been better lately. I can work around it. The nausea is still a major problem that causes me a lot of anxiety, but it doesn’t happen too often. But for some reason, the fatigue has been worse over the last few months and I just can’t fight it. I can’t push through. I can’t work around it.

I’m going out less. Exercising less. Doing less. Feeling less than.

It’s hard to explain this feeling to people. It isn’t a matter of going to sleep earlier or waking up later or taking naps. I have no reason to think I’ll feel better tomorrow or next week or next month until we figure out the cause and do something to fix it.

And yet I want so badly for it to go away.

This isn’t as bad as the fatigue I had 5 years ago. It took years to improve that, and I want to avoid getting back to that bad place. Still, this level is also limiting, and irritating, and oh so FRUSTRATING!

There is so much I want to do. Today is unseasonably warm and I was going to take a walk around a local Pond. That walk always makes me happy. I’m not in too much pain. But I just don’t have the energy. So much for that plan.

I have lists of things I both need and want to do, and I feel like I can’t do any of it today. Will I manage more than watching tv in my pajamas? I have no idea.

I’m frustrated. And I hate it. I am used to pushing and fighting for things, and I can’t do that. If the fatigue is being caused by an adrenal problem (which is looking likely as we’ve been running tests and ruling out most other potential causes) then pushing and fighting will only make it much worse.

There are no answers today. All I can do is hope it doesn’t last too much longer. And try very hard not to blame myself for not doing more.

So I am writing this in part to complain (hey, what did you expect from a blog titled Chronic Rants?) and in part to offer support to everyone else dealing with fatigue. It can stop us from working, from socializing, from buying groceries, from cleaning the house, from taking a walk, from sitting up. Fatigue sucks. And I hope yours and mine improves very soon. And in the meantime, I hope we can all find good audiobooks and tv shows for when we have enough energy to enjoy them.

(On a side note, I love audiobooks, so if you want suggestions of what to listen to, comment with the kind of stuff you like and I’ll be happy to give you some recommendations! I listen to most genres – adventure, chick lit, historical fiction, murder mysteries, all kinds of non-fiction, etc.)


First kisses and gluten ghosts

January 10, 2018

I recently went on two first dates. And both times, the gluten ghost haunted me.

If you’ve read this blog for a while, you know that I date, but not very often. So going on 2 first dates in a short span is really unusual! And each time I have a promising first date, it’s the same story: how can I tell the person about my gluten issues without making it sound too scary?

I went off gluten 6 years ago, in February 2012, and within months I saw signs of my health improving. It was slow going, and as I eventually learned about the many places gluten was hiding, I got sick less often. Still, I noticed that I often got sick after dates. Not every time, but a fair amount. Maybe it was from stress? Maybe I was overdoing things by going out and having to be “on” for so long?

It took 2.5 years after I first went gluten free, but finally I figured out the problem: kissing! There I was, sitting down with my then-boyfriend, watching him open a beer, when it hit me: he was going to drink that gluten-filled beer, then kiss me, and I bet that would make me sick! I told him my theory and asked him to brush his teeth after the beer, but instead he said he would just skip it. I didn’t get sick that night.

Or any other night I went out with him.

Then we broke up. And the next first date I had went great. I wanted to kiss him and thought, maybe I was wrong. Maybe it was a coincidence. We had met up for ice cream and he only had vanilla, so maybe it’s gluten free anyway! We kissed that night and a few hours later, I was really sick. Huh. So much for wishful thinking.

Ever since then, I have avoided first date kisses. Even if we don’t eat anything, maybe they’re wearing chapstick or lipstick that contains gluten. It’s a big risk.

I asked a friend with Celiac about this and she said she, also, can’t kiss someone who has eating and drunk something with gluten. But she said first dates aren’t a problem, because she doesn’t kiss on the first date anyway. I guess that makes it a bit simpler. For me, though, it’s an issue. I often kiss on the first date if I like the person and it’s reciprocated.

So that brings me to my two recent first dates.

The first went very well. We met for coffee and tea, and totally hit it off. After a couple hours, I suggested we eat lunch. I had already mentioned the Celiac Disease, and suggested a nearby restaurant where I knew I could eat. Over lunch, I found a way to slip in a mention about the kissing issue. I’ve been getting better at that over the years, but it still feels awkward.

After a looooong first date, almost 6 hours together, I knew I wanted to kiss her. But I couldn’t, because we’d just eaten lunch and her lunch was definitely not gluten free! Plus, she was wearing lipstick. Damn!

Thankfully, on our second date she didn’t wear lipstick (I took this as a promising sign) and we did eventually have our first kiss, with no fear of getting glutened. Yay!

Then I went out with the other person. Again, we met for coffee. It was a good first date, but not amazing. I was pretty sure I would go out with him again, though. We had met in the evening, and after an hour and a half the coffee shop was closing, so we said goodnight. I had found a way to mention the Celiac Disease, but not the kissing issue. Not that it was relevant – we had just met (we met online, so this was our first in-person meeting) and it felt more like a get-to-know-you kind of thing than a real date.

So there we were, standing on the sidewalk saying goodnight, when suddenly he was kissing me. I didn’t see it coming! We separated, and while my brain was still trying to figure out what just happened, he kissed me again, and his tongue was in my mouth! Yikes! This was too much. Forgetting the gluten issue, it just didn’t feel right at all. We said goodnight and I walked to my car feeling very confused…. and nervous!

I only saw him drink tea, but had he eaten before that? Would I get really sick? It was nerve-wracking to not know!

The gluten ghost haunted me that night and the next day, and when I didn’t get sick, I was finally able to relax.

These two dates were so different. They felt different both at the time and after the fact. But both had the same gluten ghost haunting them. The first time the ghost prevented me from kissing my date (assuming I wouldn’t have chickened out, that is) and the second time it haunted me afterward from the unexpected and unwanted kisses I received.

Dating is hard enough. I really wish I didn’t have to deal with the gluten ghost complicating it even more!


Taking a real day off

December 27, 2017

There’s this interesting thing that happens when you have daily symptoms.

Back when I worked, I would have these things called “days off.” These were days that I didn’t work. Sometimes I would hang out with friends. Sometimes I would do something fun on my own. Sometimes I would use the time to clean the apartment or run errands. Generally one day each weekend would be a day to just hang out and relax: no errands, no chores. It was great!

2017-12-18 21.45.49

Now that I’m too sick to work, I don’t go to a job, so every day is supposedly a “day off.” The thing is, I still need to take care of my health, run errands, clean the apartment, and all that other stuff. That became my job. And I try to do a little work to earn some money here and there. That’s my job, too.

The big difference is, there are no set hours. And I never know which days I’ll feel up to running errands or earning some money or any of that other stuff. So that means I now have 2 kinds of days:

  • Days that I feel like crap.
  • Days that I try to be “productive” and get stuff done.

Here’s the problem: that means I never take a “day off.” Every day is either a day to feel sick and do nothing by try to take care of my health, or a day to wash dishes, cook meals, go grocery shopping, do some work that earns money, or see a doctor. Sometimes those days might include seeing friends, which is awesome. I love hanging out with friends! The problem is, in my current state, hanging out with a friend is a fun day, but not the kind of “day off” that I really need to rest up.

I don’t rest up, because any time I feel halfway decent, I feel like I have to take advantage of that by doing as much stuff as possible (without overdoing it, of course.)

I’ve been feeling burned out lately. I know I’ve been doing too much, but when I try to take a “day off,” I fail. I end up doing laundry or trying to work. Half the time, I end up wasting time by scrolling through Facebook or something else unhelpful. Then I don’t get stuff done OR get any rest. It’s just not working.

Until this week.

This is an odd week. You see, just about everyone takes off Christmas from work. A lot of folks take off the entire week from their jobs. Some stay home and others visit family. But for me, Christmas isn’t a holiday. A couple weeks ago I did a small Chanukah lunch celebration with my family, and that was it. I baked cookies for it. Very simple.

And then this week, the world around me got quiet. The Jews were going out for Chinese food and movies (I did go out for Chinese food on Christmas Eve, actually,) the Christians were celebrating Christmas, and just about everyone else seemed to be busy with something family-related.

As I was setting up my to-do list for the week, like I always do, something occurred to me: there was almost nothing on that list that had to happen this week. Sure, it would be nice to get that stuff done, but the list never ends, and those things can happen next week instead. So what if I didn’t do them? What then?

As the light bulb went off over my head cartoon-style, I felt relaxed. It could all wait!

I have been dog sitting since the week before Christmas. (That’s him in the photo.) I have watched this guy a couple times in the past, but having him for a week and a half was different. I fell in love. I am so sad that he’s going home in a few hours! It turns out, he was the perfect companion this week.

Normally Christmas is a lonely day for me. I spend a lot of time alone, but it feels different when everyone I know is busy doing fun things and I’m not. But not this year!

This year, Christmas was the day that I FINALLY took a day off. I started it off wrong. I tried to “get stuff done.” I found myself scrolling through Facebook to procrastinate. Then I realized that it was the perfect day to just rest. Not because I was too sick to get off the couch, but because I just needed the rest.

I settled on the couch. I had my knitting in my lap and an adorable pup curled up against my leg. I watched hours of tv. I ate leftovers (no cooking!) I let the dishes sit. It was the first time in ages that I felt up to washing dishes, but let them sit anyway. How decadent!

I left the apartment only to walk the dog. Thankfully, he was happy to stay in most of the day. We snuggled and played. I watched more tv. I did more knitting.

And by the end of the day, I felt relaxed in a way that I haven’t in a long time.

Finally.

My challenge now will be to do this more than once a year in 2018. In fact, my goal is to do it to a small extent once a week. That will be one day a week that I do something fun just for me. No stress. No to do list. If I feel up to going out and taking a walk, that’s ok. But at least once every other month I will have a day at home to rest and relax and not do anything more than knit, read, and watch tv. That’s my goal.

I know I’m not the only one who struggles with this. I’ve spoken to friends with chronic illness who struggle in the same way: when they feel good, they feel an obligation to do as much as they can. And that means never having a “day off” to just do their own thing. I feel like there must be a solution out there for this problem, but I have no idea what it is.

So my questions to you are, do you ever feel this way? Have you found a way to take regular days off that works for you? And if so, what is it? Please share it in the comments because I would love to learn from you!


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