The importance of community

June 15, 2017

Last week I saw my primary care doctor for my annual exam. At the end of the visit, he brought up the fact that I was on disability. He said that only 5% of people ever manage to get off of disability benefits. He said that it was important to find activities to keep busy and productive. Then he talked about the isolation that can come when you don’t have a job to get you out of the house, and you don’t feel up to going out a lot. He said it was important to have community, and it’s important to make an effort to create that community.

He’s so right. (And I love that he’s having this conversation with his patients!)

I assured him that I have community. If he only knew.

hands-1939895_1920

I have worked hard to make friends and build community. It doesn’t come easily or naturally to me. I’m an introvert by nature, and my health issues have made me even more of an introvert. Not being able to go out often doesn’t help either. But it’s important to me to have friends and community in my life, so I made it happen.

For me, the key has been to go for quality instead of quantity. I don’t have hundreds of friends, but the ones I have are good ones. Acquaintances are often happy to help me because they see me helping others.

That’s why when I needed to borrow a wheelchair recently, I had 3 offers to lend me one, plus 2 other folks suggested local organizations that lend out medical equipment for free. When I needed someone to push that wheelchair, I was able to post on Facebook and get some offers from friends and also from acquaintances I barely know. Because I have that community.

Sometimes it’s hard. I put myself out there, which means I’m often asked for help and I need to say no. Thankfully, most people understand my limitations. And they appreciate it all the more when I volunteer. A friend is going out of town and leaving her dog at home, with the dog walker coming by many times each day to walk him. It’s not perfect, but it’s the best they can do. I said that if she gives me her key (which I am getting today), I’ll pop in to visit him a couple times, just so he has someone to cuddle with. She was amazed. To me, this is just a nice thing to do for a friend. I won’t go by every day, but on the days I’m in the neighborhood, I’ll bring a book and read while her dog gets some important snuggles. It won’t be the first time I’ve done this for a traveling friend. (And let’s be honest, while it’s an inconvenience, I certainly won’t hate doggie snuggles!)

I belong to a chronic pain support group. Having people who really understand the struggle makes such a difference. It was one of those members who ultimately lent me her wheelchair, and even put it in the car for me because I couldn’t. I do a lot for that group, too. I created and run a Facebook group so we can communicate easily between meetings. I do other behind-the-scenes tasks, too. It doesn’t take much time, but it helps people. And they notice, and want to help me in return.

It’s so easy to become self-involved these days, and more so if you’re in pain or fatigued or dealing with other symptoms all day every day. Believe me, I know. And so many people lose their friends and their families when they become sick. So I am hugely grateful for the incredible people in my life. My parents and other relatives are super supportive, my childhood friends have stood by me and help when they can, and newer friends are ready to step up and help. Acquaintances do more than I would have expected. Even strangers offer to help, thanks to all of my work in the chronic illness community online (both this anonymous blog and a lot of work under my real name.) I am so fortunate that I began building that community long before I needed it, and that I still have it.

I think we all need to heed my doctor’s words and find a way to build community. It will look different for everyone. Some people will reach out to friends, others will go to events through meetup.com (I’ve built some great community that way, too!) and others will do it all online. Whatever it looks like for you, I hope you are able to build the community that you need and that will support you, just as you will support them whenever you can.

What about you? How do you build community? Please share in the comments so we can learn from each other!

2 Comments | Expectations, Healthcare, Isolation, Kindness, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support | Permalink
Posted by chronicrants

Why socks are stressful

April 27, 2017

My friends saw the socks lined up in my drawer and they laughed. I guess I understand. It does look odd, after all.

They had taken the drawers out of my dresser so the dresser would be easier to move across the room (because my friends are super awesome like that) so they noticed the socks.

I had only lined up my socks a couple weeks earlier and I was already loving it. Now it’s been more than 2 months and I’ll never go back. I can see all of my socks at a glance, and I can easily grab the ones that are right for that day. This is important, because choosing the right socks can be stressful.

Yes, I’m talking about socks. The things that go on your feet.

IMG_20170427_215806

One morning 12 years ago my toes were swollen and painful. It was hard to walk. I saw specialists, had tests done, and it was never figured out. The only thing that helped was Prednisone, and that’s not a long term solution. Over the years, the swelling and pain came and went, sometimes at random, sometimes obviously triggered by heat. Until a few years ago. A few years ago the swelling came and it stayed. I don’t know why. No one knows why.

The amount of pain varies. I wear special orthodics, the only shoes I wear are sneakers and boots, I’m super careful. But there’s only so much I can do.

The more swollen my toes are, the harder it is to wear shoes. Or socks. On cold winter days sometimes I can’t wear socks at all, so I sit in a chair and wrap a blanket very loosely around my feet to keep the warm. It’s not ideal, but what else can I do?

Some socks are tighter in the toe, others are looser. I try different brands, always searching for the “best” socks for my poor little toes. Summer socks aren’t too hard in general, but winter socks tend to be tighter, plus they’re thicker, which makes my shoes feel tighter. But I can’t wear summer socks year-round because it’s simply too cold for that. Thanks to Raynaud’s, the circulation in my fingers and toes isn’t good, and my toes get very cold very easily. I also have to be careful not to wear warm socks on days that won’t be cold, because my toes could easily overheat, and then they’d become even more swollen and even more painful.

We all have these calculations we make in our heads a thousand times every day. When to take pills, which foods to eat, whether my fingers can manage the buttons on that dress today, can I walk in the sun or do I have to stay in the shade. For me, which socks to wear is just another calculation. Still, it’s one I struggle with Everything. Single. Morning.

I became inspired to line up my socks as I was reading an organizational book. I put warmer socks together and cooler socks together. Then I organized them by how loose or tight they are around the toes. It’s been amazing! No more hunting through my drawer each morning looking for the “right” socks for the day. Now I just decide on the weather and how swollen my toes are. If it’s a cold day and my toes aren’t too swollen, I can go for those cozy red socks. If it’s a cold day but my toes are more swollen, the soft purple socks will do.

It seems silly to an outsider. But to me, it’s one of the thousand daily health calculations I make that’s been made easier. So it’s worth looking silly. Because it works.

 

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

Tapping into my extrovert side

February 6, 2017

img_20161223_091955I’m an introvert. If I’d known that about myself and understood it, my teens and 20s would have been a lot easier, that’s for sure! It turns out, it’s ok to want to stay in and read a book on a Saturday night. Go figure.

I also happen to be a social introvert. I love being with people. I even feel like I need to be around people from time to time. And on the days I’m feeling more extroverted, I’m good at it. I can have pleasant conversations with good friends and with total strangers alike. As long as I get plenty of breaks for alone time so I can recharge.

The thing is, when you’ve got a chronic illness that creates so much fatigue you can’t work and can’t always leave the house, and so much pain that sometimes getting to the bathroom takes everything you’ve got, social time can be hard to come by. Friends sometimes come over, but not so much these days. As my friends have begun to have kids, visiting has become difficult or impossible. I understand and I don’t blame them. But it still sucks.

Six weeks ago I moved. I can’t believe it’s already been 6 weeks! I knew moving would mean that some friends would visit less often, since I’m not on public transportation anymore. Still, it’s not like I had that many visitors anyway. It was worth the trade-off, I figured. Little did I know!

This is the first time since college that I’ve lived in an apartment complex, but I’ve never lived in a complex like this. People are so nice and friendly!

First there was the complex-wide holiday party. It was less than a week before I moved in, and I should have been home packing boxes, but I knew it was important to meet people. So I got slightly dressed up, drove all the way out, and put on my extrovert costume. I met several people, including a few who lived in my building, and traded phone numbers with a couple of them.

After the move I made a point of talking to neighbors. I introduced myself to everyone I met. I knocked on doors in my hallway. I chatted with the woman clearing snow off the car next to mine, and the random person passing walking past me on the sidewalk. I smiled and was nice and friendly.

And it’s paying off. A neighbor and I have been taking walks in the evenings when she gets home from work. We have done this at least a half dozen times, and it’s really nice. Another neighbor invited me over for game night. That led me to meeting more neighbors. I hit it off with one right away, and we’ve now hung out a couple of times. Today I saw a neighbor I’d spoken to a few times walking by my patio door so I opened the door to say hi. She and her puppy (so cute!!) came in and I invited her to sit. We chatted for a bit as the puppy sniffed around and then returned to me for petting. As she left, I saw another neighbor who I knew, so I invited her and her pup in, and they hung out for a bit.

None of these are life-altering per se. But they matter. On a day when I wasn’t going to socialize, I socialized. It didn’t last long, but it happened.

I have spent many days being home alone and feeling lonely and sad. I know I will feel that way many more days. It sucks, but that’s my reality. A lot of the time I won’t want visitors. But on the days that I want to see people but don’t feel up to going anywhere, how amazing that I have neighbors right here who I can hang out with! It might not happen every day, but that doesn’t change the fact that it’s always possible. In time, I will get to know more of them. Some will become friends and some won’t. Just having people to say hi to, though, makes a huge difference.

I knew this was a good move for me. This just makes it 10 times better.

2 Comments | Fatigue, Isolation, Limitations, Pain, Raves, Unpredictable | Permalink
Posted by chronicrants

I appreciate you

January 29, 2017

It’s easy to take the constants in our life for granted. We all do it, as much as we try not to, and that’s ok. From time to time, though, I’m struck by how lucky I am to have something, and I want to make a point of showing my appreciation.

You guys are one of those things I was taking for granted. When I started this site 5.5 years ago, one reason was to build up some community. I was thrilled when I received my first comment, and comments still excite me.

Some of you are regular commenters, and we’ve gotten to know each other a bit. I know the names of your pets (hi Sable!) or kids or spouses. I know your worries and happiness, just as you know mine. We haven’t met. Often we don’t know each others’ real names. Yet somehow we know each other. And for that I’m appreciative.

My posts last few posts were a bit negative. When I thought about writing something today, I thought I should write something more cheery so you guys wouldn’t worry about me. After all, it’s not like things are all bad.

It was such a nice thought, that there are people out there I’ve never met or spoken to who care. And I care about them.

There are negatives. There’s a rally today against Trump’s immigration ban that I wanted to attend but couldn’t. I was exposed to a stomach bug and am hoping I don’t get it. I’m in pain. On the other hand, my new business is starting to gain a bit of traction. I got to spend some time this weekend with people I love who I don’t get to see very often. My new home is lovely and comfortable and feels like the perfect fit for me.

But at the end of it all, what’s most important is people. My family, my friends, and my extended communities, like you guys, are what make life great.

So thanks for reading and for commenting. I’ll try to write something a bit less sappy next time. For now, though, I just want to say that I appreciate you.

4 Comments | Isolation, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Support | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »