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.

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The power of a hug

October 14, 2017

Somehow, I did it. Despite the crappy weather that makes me feel horrible, I managed to not only survive the short weekend with my friends, but to enjoy it!

Ok, it wasn’t all great. I did feel like shit part of the time. But having friends there made it easier to handle in some ways.

Of course, having friends there also made it harder to handle. They went on walks when I couldn’t, and while someone was always hanging out at the house with me, I know they limited themselves to do it. I wanted to be carefree and have fun, but life isn’t always that way.

Not that the others were carefree. One was frustrated with a spouse, another had job worries, etc. You know, life. It’s easy to forget about that stuff when you live alone and can’t work, but health does not guarantee an easy, stress-free life.

So there we were on Saturday night, having a lovely dinner, when it hit me. Symptoms. Fuck.

I went to lay down on the couch. It was an open space. No one could see me because the back of the couch blocked their view from the dining room table, but they knew I was there, and I would sometimes speak up to join in the conversation as they cleared the dishes and put away food. I was nauseated and in pain, not that they knew what my symptoms were. They just went about their evening, because they know that’s what I prefer. No fuss.

And then it got worse. Resting on the couch wasn’t enough. I found myself breathing hard, face pressed to a pillow, willing myself to feel better. I wanted to have fun with my friends. I didn’t want them to know what was going on.

It’s lousy that we have this stigma in our society. These are my closest friends, but I didn’t want to tell them what was going on because I didn’t want to sound whiny, or like I was trying to make a big deal out of nothing.

How ridiculous. How common. How sadly natural.

And then suddenly, as if she knew, one friend came over, leaned over the back of the couch, and asked earnestly if she could do anything for me. I said no, while at the same time, wishing I could ask for a hug. She’s not the huggy type, and I felt ridiculous. Still, her asking was like a hug in a way, and it suddenly brought tears to my eyes.

I never cry when I feel bad like this. It wasn’t that bad, on my own scale of suckitude, after all. But having someone care to ask made me emotional. I’m not used to that. Usually when I feel horrible like I did that night, I’m at home. Alone. With no one around to even be aware that something is wrong, much less to offer help.

Then another friend came over and simply gave me a hug. And when I let go to pull back, she held on. She kept hugging. She hugged and hugged. And it felt amazing.

The next day I pulled her aside to tell her how much that hug helped. But in the moment, I just felt it and enjoyed it.

Amazingly, I started feeling better right after that. Well enough to at least get up for some more medical cannabis. That helped some more. And then, suddenly (though not really suddenly at all) I was able to get up and move around. Ok, my knee still had shooting pains, so I wasn’t walking well. I had to sit with my leg up for the rest of the night. But the nausea went away. The pain because bearable. And my heart felt happy.

Because for once, friends were there to offer help and give me hugs. And that made all the difference.

 


Going public is like coming out over and over

September 13, 2017

Once upon a time, no one knew I had health problems unless I told them. Ok, that’s not entirely true. There were signs. It’s just that most people didn’t pick up on that signs, or I could shrug them off as an injury or something. It was easy to lie.

Then I decided to write a book.* Now, when you Google my name, that book comes up. And it’s all about having chronic illnesses.

This has been such an interesting experience. It makes my journey public in a way it never was, because even though most people don’t Google my name, I know that they could. And that leads me to think and speak about my health in different ways.

Take last night, for example. I was giving a presentation in front of a group on a different topic entirely. Someone asked a question and I was answering it with a few examples. And then I mentioned medical stuff as a relevant example. There was was, in front of a small group, pointing at a screen, and looking completely healthy except for my knee braces. And I felt odd mentioning my health, but it was relevant. And I even said, “this is no secret – if you Google me, you’ll see the book I wrote on this topic.” And I saw some eyes move south to those knee braces.

It’s like coming out. I joined an online dating site a few months ago. I was taking a walk with a neighbor and she was asking me about it. We didn’t know each other well, but were friendly. She asked if I had met anyone and I said I’d met a couple interesting people. She asked about them, and as I mentioned the man, everything was normal. When I mentioned the woman, I saw her hesitate. I watched her brain churn as she processed that bit, and then we moved on. With other people, where there’s context, I might directly say that I’m bisexual. But no matter what, if the topic is going to come up, I need to come out over and over again, because whether I’m dating or single, no one will know I’m bi if I don’t mention it.

And every time, I wonder how the other person will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Just like mention my health problems. Every time, it’s necessary to specify what I’m talking about. Every time, I wonder how they will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Sometimes I want to wear a sign on my head, or print business cards to hand out: YES, I HAVE CHRONIC ILLNESSES AND NO, THE DETAILS ARE NOT YOUR BUSINESS. Except that now, with the book, some of the details are out there. So they could be your business. Still, it doesn’t mean I want to talk about it all the damn time.

But you see, there’s also the part we don’t usually think about: it’s freeing! Every time I start to question whether or not to mention something, I remember, it’s out there anyway, so why not talk about it? Is it ok to share this? Might as well. Is this a secret? Apparently, not any more.

Again, it’s like coming out. I don’t have to watch my pronouns anymore. I can just speak about past loves and lovers like anyone else would. Sure, I have to use my judgement for safety. Yes, some people will be jerks, but there aren’t any secrets.

That isn’t to say I don’t have limitations. I still write things on this blog, for example, that I wouldn’t say publicly. There’s definitely something to be said for having a pseudonym. Still, to be able to speak publicly and not question myself constantly is HUGE!

It also means more people in my life know about my health issues. I’m more open about it on Facebook because, after all, they see me promoting my book. There’s no question about it at all anymore.

Coming out about orientation, health, or anything else is a personal choice. This isn’t something I would have done even just a few years ago. I am so glad I have. For me, right now, this was definitely the right move. If it’s not right for you, though, that’s cool, too. You have to do what works for you.

Have you been public about your health stuff? How has that gone for you? I’d love to hear about it in the comments!

*It’s frustrating that I can’t tell you what the book is. I want to so badly, but that would defeat the purpose of having a pseudonym here.


When friends have chronic illnesses too

August 8, 2017

The first couple of years in my chronic pain support group, I got a lot of knowledge and support from the group. But now, what I get out of the group more than anything else is friends who understand.

It started slowly, with a couple of conversations after the group ended. Eventually, two of us decided to get together. Then we kept hanging out. That emboldened me, so I invited another potential friend to hang out. Then another. I haven’t stayed friends with all of them, but the ones I have kept in touch with are now valued friendships.

It’s not all rosy. Having friends with chronic illnesses can present its own challenges. We cancel on each other constantly. I invited a group over to my place. 6 were going to come. 2 showed up. Everyone else didn’t feel up to it at the last minute.

And speaking of logistics, it’s so great to have people to hang out with on a weekday! Being home so much can be isolating. Not working is lonely and makes me feel unproductive. Having a place to go and someone to see, even just once or twice a month, makes a huge difference.

Now on the flip side, when I’ve been the one to not show up because I don’t feel well, I know they understand. I don’t have to explain, make excuses, or apologize. It’s totally fine. And that’s awesome.

Of course, we don’t always understand. No two illnesses are the same, even when you have the same diagnosis. We share what helps us and what doesn’t, which is great. But sometimes there’s a bit of envy, frustration, and defensiveness, too. Why is she complaining about having trouble walking when I can’t walk at all today? Should I tell her about my pain when I know hers is even worse? I wish I could work/travel/have kids/have dogs/go to festivals/whatever like she does. I have had all of these thoughts and feelings and more. I try to go with it. It’s natural and ok to feel it sometimes. I just make sure it’s not all the time.

One friend I especially like is someone I think I would have been friends with if we were both healthy, too. When we hang out, sometimes we discuss our health problems. More often we’re busy with the other things in our lives – talking about my dating status, tossing a ball for her adorable dog, playing board games, comparing our latest crochet projects. Just stuff. Because we have interests in our lives besides our health, and that’s important. And yes, we talk about health stuff too. We give each other tips for handling certain symptoms. We provide an ear when the other person just needs to talk. We bounce idea off each other.

These friendships mean the world to me.

Not all friendships are in person. I have been amazed at the friendships I have cultivated online, too. It can be hard with this blog, since it’s anonymous, but I am also online in the chronic illness community as me. Through this blog, I have had some great email exchanges with folks. Through my own profile I have met amazing people both online and in person.

If you don’t have friends or community with chronic illness, and you feel lonely or misunderstood, give it a shot! Just remember, chronic illnesses shouldn’t be the only aspect of your friendship. Do other things, talk about other things, focus on other things. From time to time it’s nice to have someone to complain to about all of this health shit, but that won’t be the basis of a solid friendship.

Do you have friends with chronic illnesses? If so, how does that affect your friendships? Please share in the comments!


When the best medicine is taking care of someone else

June 17, 2017

Today started out rough. I felt like I did too much on Wednesday. Thursday I did less, but probably should have stayed home to rest. By Friday I had no choice but to spend all day at home in my pajamas, watching tv and crocheting. So this morning, I was glad to feel better than yesterday, but I still didn’t feel great. And yet, I didn’t want to cancel all of my plans.

My evening plans had to be cancelled. I knew I had to get to bed early. But the afternoon plans – a friend coming over who I already cancelled on at the last minute last time – I didn’t want to cancel again. So I rallied and got dressed and waited for her to arrive, knowing it would be a quiet day and I wouldn’t have to leave my apartment.

When she came, she had the start of a migraine. Unfortunately, she had switched purses and didn’t have the over-the-counter medication that helps her. I didn’t have it either. I offered to go to the store, but she said no. So I messaged a bunch of neighbors. No luck.

I got her a cold pack for her head. I made her tea. I shut off the lights. Eventually, I insisted on going to the store for her. So much for staying home. But the funny thing was, I felt ok.

After taking the med she slowly started to feel better. I got her food and kept on eye on her, making sure she was doing ok.

I have noticed this kind of thing before. Obviously, there are times when I’m not at all able to care for someone else, or when caring for someone else will make me feel worse. But then there are other times, times like today. Times when I’m not doing great, but I’m not doing horribly either, and taking care of someone else gets me outside of my own head, distracted from my own condition, and eventually I even begin to feel better.

I feel bad my friend had a migraine. I wish that hadn’t happened. Still, it was a good reminder for me:

Sometimes the best medicine is taking care of someone else.


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.

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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!


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.

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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.

 


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