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!

Leave a Comment » | Expectations, Isolation, Limitations, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

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.

Leave a Comment » | Frustration, Healthcare, Medication, Pain, Rants | Permalink
Posted by chronicrants

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!

Leave a Comment » | Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

My nightmare came true

December 19, 2017

I have had the dream more times than I can count. I’m sitting at a table, talking and laughing with the people there. The people vary, but it’s always some combination of my family and friends. Sometimes my grandparents are there, which is nice, since they are no longer with us and I miss them.

As everyone laughs over the meal, food is passed around. Someone hands me a piece of bread or a cracker, and I eat it. I immediately realize what I just did – I ate gluten! I’m horrified. Then I wake up in a panic.

It takes some times for my racing heart to slow down, to remember that it was only a bad dream, that I did really eat gluten.

bread-534574_1920

These kinds of nightmares make sense. After all, I spend a lot of my life stressing out over food, worrying that I might accidentally eat something that will make me very sick, and knowing it’s easy to miss that thing. Still, it’s not like I would eat a cracker!

I went gluten free 6 years ago. At least, I thought I did. That’s when I stopped eating obvious gluten. It took years to eliminate the final traces of it from my life. Gluten hides everywhere, it seems, and I had never thought it check lemon juice, chapstick, cutting boards, or hand lotion. I certainly hadn’t thought about what my date had had to eat or drink before I kissed them, but it turns out, that is enough exposure to get me sick, too. But eventually, I figured those out.

Finally, thankfully, gluten was gone. And I felt so much better!

Then in September, I got sick. Really sick. I’ll save you the gory details, since they aren’t relevant. My naturopath had told me that, thanks to my lack of gluten exposure, it could take my body up to 48 hours to react. When I first got sick, I couldn’t figure it out – I had only eaten my own cooking all day. Then I remembered what my naturopath said, so I looked at the calendar. And I knew.

2 days earlier, I had eaten dinner in the house of someone I trusted to make a gluten free meal. We had discussed every ingredient, so I knew I would be fine. There was only 1 thing to avoid: the bread. Everyone careful, even passing the bread back and forth on the other side of the table, so crumbs wouldn’t land on my plate.

Later, I was helping to clear the table between dinner and dessert. Passing back to the dining room, I grabbed some grapes off the plate that had been put out. After I swallowed, someone mentioned that the little kid in attendance had taken a huge handful of grapes, realized it was too many, and put some back. The little kid who had been eating bread with his hands. Yikes! But when I felt fine that day I forgot all about it. I remembered only 2 days later.

I was really sick for 3 or 4 days, and it was a full 2 weeks before I could eat normally again. Just from that tiny bit of exposure, probably no more than a crumb.

And that’s what makes this week’s living nightmare so horrible.

There I was, enjoying a meal at the same home, knowing everything was fine. I had checked each ingredient. The soup was great. So was the kugel. I was enjoying the salad. She had made a salad bar, putting out each vegetable in its own bowl, along with chopped up eggs, sliced turkey, and more, so we could take whatever we wanted. I ate one rolled up piece of sliced turkey, and the second I swallowed, it hit me.

“Is this gluten free?”
“Of course it is, it’s turkey.”

And I knew. I spent some time crying, before finally calming down enough to come back. But I was no longer laughing and talking with the group. I was thinking about how I would handle this week.

She had bought the turkey at the supermarket’s deli counter. Maybe it was gluten free, maybe not. There’s no way to know. I know from my own research that most deli counter turkey is not gluten free, but maybe she bought one of the few that are? Still, she didn’t know to have the deli worker clean the machine first, to avoid contamination.

This was the one home where I always felt safe eating, and even there, she wasn’t careful enough. Can I never eat outside of my own home again? It’s so frustrating!

But that’s a long term problem for another day. In the meantime, there’s the question of whether or not I got glutened. There’s nothing to do but wait. Since it took 2 days for symptoms to appear last time, I’m in limbo. I haven’t gotten sick yet, but that doesn’t mean I won’t.

So I did the only thing I could think to do: I stopped eating. For the past 2 days, I have consumed only a few pieces of gluten free bread with some coconut oil, a little plain white rice, apple juice, and water. That’s it. Because not eating much for 2 days won’t kill me, but if I was glutened, and I get sick, I will be VERY glad I didn’t eat much. At least, that’s what I’m guessing.

The truth is, I don’t know. Because, despite the nightmares, this has never happened before. In 6 years, this is the first time I have had any idea I might have been glutened before I experienced any symptoms.

The psychological impact is rough. Especially because all I can do now is wait. By tomorrow I will know. My nightmare has already come true. Now I am waiting to see how bad it will be.

6 Comments | Expectations, Frustration, Gastrointestinal, Pain, Rants | Permalink
Posted by chronicrants

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