It takes skill to injury yourself the way I do

March 27, 2018

The other day I woke up to find that I had wrenched my shoulder in my sleep. It felt like it was partially dislocated. Sometimes it felt fine, and then I’d try to put on a shirt or reach for something and there’d be searing pain. I didn’t fall. I didn’t pick up something heavy. I slept wrong.

Everyone hurts themselves from time to time. A stubbed toe or a paper cut are the hazards of daily life. No big deal. But then there’s this other level that shows up when your body is out of whack. Being out of whack makes me more prone to these kinds of injuries, and sometimes they make no sense.

Like the time I wiggled my toes and injured a tendon. That was a month ago. It still hurts.

I’m skilled, I tell you. Totally skilled. I mean, it’s not the average person who could give themselves a long term toe tendon injury, with daily pain, just by wiggling their toes!

And do I go to the doctor for any of these injuries? No. Of course not. Because I’d be going All. The. Time!

Don’t get me wrong. I do take big things seriously. When I dropped a chef’s knife on my foot a couple years ago, I went to the emergency room for stitches, and later had surgery.

But no, I don’t see a doctor for every injury. Just like I don’t see a doctor for every new gastrointestinal symptom or new pain or new type of fatigue. What’s the point?

So I’m waiting these out, hoping they’ll eventually go away on their own. They often do. Like the time I finally went to the doctor for the unmistakable nerve pain, to be told I had a pinched nerve and should go to physical therapy. I didn’t have time. I asked if not going would cause long term damage. She said no. So I didn’t go. Eventually it fixed itself. If it hadn’t, I’d have gone.

So many of us have far too many medical issues already, so we try to ignore the little ones. But it sure would be easier to ignore them if we weren’t so skilled at creating new ones constantly!

Leave a Comment » | Expectations, Healthcare, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Self care goes a long way

March 21, 2018

I have to try harder. All the time. It feels like nothing I do is ever going to be enough. Sometimes it’s my body limiting me. Sometimes it’s fear. Sometimes it’s emotions. But I always feel like I need to do more.

That’s why it’s so hard to slow down.

On the days that I’m in too much pain to walk, I’m forced to stay off my feet. When my energy is low, I’m forced to be at home. But I still try to wash dishes or read or do something useful. But who defines what’s “useful”? Sometimes, the most useful thing is to take care of myself.

A few weeks ago I was very stressed out. I have had years to get used to taking care of myself physically, but taking care of myself emotionally was much harder. Because I had to focus on my feelings. I couldn’t do anything tangible to take care of myself. Physically I felt like I should be doing more, but I knew I needed to deal with my emotions.

So I did. For a few days I wrote in a journal, watched movies that I knew would trigger the feelings I was avoiding, and stopped myself from the automatic distraction mode I’m so used to engaging in. Slowly, it worked. I dealt with my feelings. It’s still an ongoing process, but I feel like myself again, and things are better.

It’s easy to always feel like we’re never doing enough. Especially for those of us who are too sick to work full time and do the other things that society expects. But we need to remember that self-care is important, too. Yes, we need to have balance. Dishes must be washed, clothes must be cleaned, groceries must be bought. But we also need to take care of ourselves on every level.

This isn’t new to me, but it’s an ongoing lesson that I am constantly striving to learn. I think that many of us are.

Leave a Comment » | Expectations, Fatigue, Frustration, Limitations, Raves, Symptoms | Permalink
Posted by chronicrants

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

Reunion surprises

November 27, 2017

As so many people do this time of year, I recently went to my high school reunion. It was WEIRD! Of course, it was weird in the obvious ways (That person knows who I am? How could that person have forgotten me? Wow, she looks OLD! I don’t even remember him.) And then there were some chronic illness-related surprises. I thought I’d share a couple of them with you today.

First, there was my own perspective, which surprised the hell out of me. For the reunion 10 years ago, life was pretty good, if you didn’t count my complete inability to get into a healthy romantic relationship. But the rest was good. I was able to go to the reunion and talk about my good life.

Five years ago I was miserable. If you scroll through the archives for this blog, you’ll see that I was NOT doing well health-wise. That had a bit emotional impact, too. I was fighting to get disability benefits. I didn’t want them, but I needed them. Unfortunately, I was deemed “too healthy” for them. Fuck that shit. I felt horrible. I was house-bound multiple days every week. I didn’t think I had the energy for a reunion, and even if I did, what would I say? I wasn’t dating anyone, I wasn’t working, and the future felt bleak. Blah. I stayed home.

This year was different all around. First, I’m feeling well enough to attend a reunion! Ok, maybe not every day, but I rested up in advance and I managed it. I’m doing some very part time work, and when someone asked what I was doing for work, I mentioned that. There was no need to say it was part time. I talked about it like it was a full time job, because why waste time on details. This many years out of school, most of my classmates are married and have kids. I was one of the only ones who was unmarried. But I was ok with that. I mentioned to someone that I was writing a book, and when he asked about the topic, I said it was about chronic illness. I didn’t bring up my health stuff otherwise, and I didn’t dwell on it, but I also didn’t hide it.

I caught up with people and had a nice time. Because you see, I went into this reunion not trying to impress anyone. I didn’t care what they thought of me. Sure, there were a few people I wanted to reconnect with, but most I didn’t even bother to talk to because I didn’t care to find out what they’d been up to. If they asked me, then I answered, but I never worried about them judging me. For one thing, I figured most of them would be more worried about others judging them than about passing judgment. But also, what do I care what a bunch of people from high school think about me now?

My own attitude was perfect. It was freeing. And it shocked the hell out of me.

But there was another surprise. Over the years, I have become Facebook friends with a lot of former classmates. Facebook is weird. We’re not friends now, we weren’t friends then, but we’re connected and seeing things about each others’ lives. Go figure.

I write about a lot of stuff on Facebook: politics, cute dogs, crochet, my small business, and of course, chronic illness. Sometimes I share funny memes. Sometimes I share poignant blog posts. Other times it’s news articles. And occasionally, I write personal essays.

So I’m at the reunion, and this guy I wasn’t really friends with in high school, though we did share a few classes, came up to me. We’re Facebook friends now, but haven’t spoken to each other since the last reunion I attended, 10 years ago. He came up to me, looked me in the eye, and said he liked my writing about chronic pain. It got to him. Then he told me about a friend who was recently diagnosed with MS.

Of all the things I expected to happen at the reunion, that wasn’t one of them. This guy I didn’t really know told me that my writing about chronic pain had an impact on him. I was touched. And very surprised.

You see, we don’t know who will be impacted when we speak honestly about our situations. There’s a lot I don’t share on Facebook – they don’t need to know that I’m on food stamps or SSDI. They don’t need to know my embarrassing stories. But what I do share, I share honestly and from the heart.

This reunion was nothing like what I would have expected. It was fun and loud and interesting. And most surprising of all, my chronic illnesses were present, but not over-powering. That’s something that I hope to continue.

2 Comments | Educating, Expectations, Raves, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

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