There’s no such thing as a quick swim anymore

June 26, 2017
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I wouldn’t mind being able to do this!

When I moved to a new apartment a few months back, a lot of friends were excited for me that I now had a pool. They were a lot more excited than I was.

I lived in a building in a pool once before. It was about 15 years ago. I was living in sunny Los Angeles, where pools are more common, and I was in much better health. I swam regularly during the months when I had less work (and more time.) It was lovely!

But this is not that. This is different. My new friends in the building often invite me for a quick swim. They have no idea what that really means for me.

  • Driving to the pool seems silly, but it’s 1/3 mile away, which is sometimes too far to walk, especially in the summer air.
  • If it’s too cool, no one wants to swim.
  • If it’s too hot, I can’t be outside, even in the pool.
  • If it’s too humid, I can’t be outside, even in the pool.
  • I must bring a lot of water and snacks, even for a “quick” swim, to stay hydrated and keep my strength up.
  • I will be in a lot of pain afterwards.
  • I will be in a lot of pain the next day.
  • I will be exhausted the next day.
  • I might have to cancel all of my plans for the next day so that I can rest and recover.
  • I won’t be able to cook that night, so I need to have leftovers available for dinner.
  • Obviously I can’t swim if I have plans later in the day, because I’ll need to rest.
  • I need to take extra meds if I’m going to swim, which means I have to know about swimming far enough in advance to take the meds.

There’s more, of course, but this gives folks a good idea of why swimming for me isn’t the relaxing, care-free, spontaneous, fun activity that it is for my neighbors. There are many things in our lives that get ridiculously more complicated, painful, and exhausting once chronic illness enters the picture, like grocery shopping. The big difference is that swimming is completely optional. Sure, skipping the pool hurts my social life a bit. But it helps my LIFE life a lot!

I’m not saying I won’t go swimming at all this summer. Only that the logistics have to be just right. I need to know the right people will be there so I’ll have, I need to be feeling good that day and not have other plans in the next day and a half, the weather has to be just right.

It’s not easy. But then, few things are when chronic illness is involved. So yes, I will be the “spoil sport” who skips the pool. I can live with that. Because I’ll live better for it.


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 am I having flashbacks?

April 11, 2017

Something happened the other day that scared me, and it finally occurred to me that I should talk to you guys about it!

I’m keeping this short and to the point.

For several years now, from time to time something will trigger me to very strongly remember a medical experience. The memories are strong, but they’re just memories.

Then the other day, it wasn’t just a memory. It’s what I’m guessing is called a flashback. I wasn’t confused. I knew I wasn’t in the doctor’s office. I felt like I was there. I could see the nurse standing over me. I could feel my arm outstretched as she looked for a vein (while in real life it wasn’t stretched out at all.) And I got all of the same symptoms I’d had at that time – the dizziness and jumpy vision among others, all while I knew it wasn’t real, it was a memory or something. Each flash was short, but then it would come back (the trigger remained for a while.) As soon as the trigger was gone, I felt fine. Shaky and confused, of course, but fine.

Afterwards, I figured out what triggered this. But WHY was it a flashback?

For years I have assured people I don’t have PTSD. I’ve read the descriptions many times and I don’t have it. But maybe I have something else?

I don’t have a therapist and I won’t have one any time soon. After all, this only happened once. And therapists are expensive. And my past therapy experiences weren’t good, so it’s not like I’m feeling like one will help me.

But the thing is, I want to know what’s going on. A label might help, because then I can look into ways to prevent it, or at least ways to handle it if it happens again. Coping mechanisms.

Has this happened to you? If so, what caused it? What do you do about it? Please let me know, so maybe we can learn from each other!


Getting ready to date

March 20, 2017

I’ve been super busy. Well, super busy for me, anyway. I have fewer “good” hours in a day than a healthy person, and they get filled up way too easily.

Which makes me wonder how I’ll manage to go on any dates.

I have written about dating on here many times. It’s not my favorite thing. I want a relationship, but I don’t want to date. First dates are difficult, tiring, time consuming. They’re full of small talk and uneasy silences at worst, and uncertainty at best.

I used to date a lot, but for the past 2 years I barely have. There are a lot of reasons for this, mostly having to do with bad breakups, a lack of energy, and different priorities. If I’m going to spend my  energy going out with people, I’d rather go out with friends. After all, I don’t see my friends enough anyway.

The thing is, that leaves me single and alone. I don’t mind being single and alone overall, actually. It’s really very nice in a lot of ways. But sometimes I want a companion. I want a best friend. I want sex.

So I’m trying to get back out there. Last month I went to a singles’ event and met two very nice people. The first was funny and interesting and smart… and self-centered. He never asked a single question about me. I knew all about his hobbies, his job, where he went to school. He doesn’t know any of that about me.

The next was cut and sweet and kind and lovely and said she’d like to be friends. Ouch.

So now what? I have two choices. I can sign up for OK Cupid or another site, which I really don’t want to do. I’m not a fan for a whole lot of reasons. Or I can try to meet someone in person, which hasn’t exactly gone well for me (see above: almost no dates for 2 years – and I wasn’t turning anyone down.)

I need to learn to flirt. At some point I stopped flirting, and it’s like I forgot how. I need to dress better – not easy when the clothing budget is $0. I need to make an effort.

An effort.

As if I don’t already make an effort every minute of every day. As if simply getting dressed and putting on minimal makeup and driving to meet someone and holding up my end of a conversation isn’t effort enough. As if dealing with my health isn’t effort enough.

But if I want to date, what choice do I have?

So I’m going to try. I’m going to dive back into the world of trying to flirt on a first date while also debating whether or not to hint at my health issues. I’m going to skip out on things during the day so I can have a simple coffee date in the evening. I’m going to go back into the world of suggesting alternatives to all of the dates that someone suggests which I know I can’t manage, without telling them why I’d rather sit in a coffee shop than enjoy an outdoor picnic. I’m going to go back to avoiding kisses on the first date because I haven’t yet told my date that the gluten they ate will make me sick if our lips connect.

And I’m going back into the world of constant rejection. Because apparently it’s not enough that my body rejects me, now I’m courting it from others. Somewhere in the last 10 years, between my late 20s and my late 30s, I stopped turning heads. So I need to accept that passive rejection as well.

So please wish me luck, friends. Particularly when it comes to finding the energy and pain-free days to go on dates. And please offer me any tips you have. Especially on flirting. I need lots of help with flirting.

 


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.


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.


Sometimes I just need hugs

January 23, 2017

It’s been an interesting time. Last month I moved to a new apartment in a new town after 10 years in my last apartment and 13 in that neighborhood. I’m meeting new people and getting used to a new way of life. And 2 days ago I went to a massive protest to protect my rights and speak out against those who want to destroy them.

I’m sure I’ll talk about the politics a different day, but today’s post isn’t about that. It’s about needing a hug.

On the weeks I don’t always see friends. When I do, we might give a cursory “hello” hug. This time of year I usually avoid those hugs, since it’s flu season my immune system sucks. But sometimes I just want one. And not a cursory hug. No, I want a REAL hug. The strong kind. The comforting kind.

The protest was emotional. 175,000 people flooding Boston Common. I’ve never seen or experienced anything like it. I hadn’t made plans to meet up with my friends beforehand because they were going to stand and watch the rally, while I was going to be in the accessible seating area. It was a great area, if only my friends had been there. We were going to find a way to meet up before the march began. Unfortunately, the cell phone towers couldn’t handle 175,000 people and the lines went down. I lost my signal for an hour and a half. By the time it came back, the march was starting and it was impossible to reach anyone. I was lonely the entire time. I chatting with folks, because that’s who I am, and it was great to talk to them. I probably wouldn’t have talked to so many strangers if I’d been with my friends. But I needed my friends. I needed to be around people I knew and who knew me. And I needed hugs. Alas, that never worked out.

I went home alone. I hung out with a neighbor who I like, but we’re not at the “comforting hugs” stage of our blooming friendship yet. Since then I have been at home, resting. In a few minutes I’ll leave my apartment for the first time since the march to take my car in for service. I doubt I’ll get a comforting hug there.

It’s not the end of the world. I’ll manage. But sometimes I just need a hug, and this is one of those times. I wish I had a friend or significant other who I could just hold and cuddle with until I felt a little less scared, angry, and bad.

Some of my restriction is me. I should have reached out to friends before the march to make more concrete plans. I should have asked them to join me in the seating area (why didn’t I ask? That’s something to explore another day.) Some of it is my health. I couldn’t go out yesterday. It was Sunday, and a lot of people were out and about, talking about this. I was at home resting. It was needed and it worked. Without that day to rest, I wouldn’t be able to bring my car in for service today. I was online talking to people. That helped. But it wasn’t the same as being with them in person. It was good, just not enough.

Because I still need a hug.


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