Painful weather, like it or not

October 5, 2017

It’s October in New England, but you wouldn’t know it if you didn’t look at a calendar.

Every summer I count down until the third weekend in September. That’s when I know the weather will have finally shifted for good, and I’ll be feeling less pain, less fatigue, and less nausea. It’s truly a magical time.

But not this year.

This year we had cooler weather in August, and I was grateful for that, but I also knew it wouldn’t last. September was up and down. But surely October would be my time, right? Not so much.

When you have chronic illness, nothing is simple, and the unpredictable symptoms, flares, and other issues can make life hard to plan. Still, we do our best. For me, that means making more plans in the fall and winter, when I know I will feel better.

That’s why, even though a “simple” weekend away¬†with my best girlfriends is incredibly hard, I felt I could do it if it was in the fall. My friends are understanding, and were perfectly happy to avoid planning anything in September, just in case. They get it. Every time we’ve had cooler, less humid weather, I get text messages and emails from friends saying, “This is your kind of weather! I hope you’re feeling up to enjoy it.” And I love that they understand.

So we planned for “safe” October. Who could have known? This isn’t our typical cool, crisp, wonderful New England autumn.

Thankfully the temperatures are cool enough, though way too warm for this time of year (upper 70s?!? Are you fucking kidding me?!?) My problem is the dew point. It’s supposed to get close to 70 this weekend! Even healthy people find that uncomfortable and for me, it will be near torture. But what can I do? The house we rented doesn’t have air conditioning – after all, none of us thought we’d need it. Higher on our list was finding a house with a working fire place. Last year we did this trip later in October and it snowed. We had a lovely time sitting by a roaring fire, and wanted to repeat that experience. If only.

I am in pain already, and it’s only beginning. Well yes, I’m always in pain, but this is worse, and I know it’s from the weather. My toes are swollen and painful. My knee is swollen and so painful that it’s hard to walk. My neck hurts. Everything is just¬†wrong.

But I won’t stay home. I have been looking forward to this trip for a year. It is my one chance to do this. I will NOT give it up!

I will bring the medications that I can. I will be careful how I eat. And I will block out a lot of extra recovery time when I return. Still, I know this is going to be really rough. I will be in pain, nauseated, and fatigued. Thankfully, I will be surrounding by wonderful women, women I have known most of my life, the only non-relatives who knew me before any of my symptoms began, women who have always been supportive. And maybe most importantly, women who have always made me laugh, even at the worst of times.

So wish me luck. Because I want to be able to enjoy this weekend as much as possible. If only Mother Nature would cooperate.


When friends and weather don’t accommodate the good days

February 13, 2015

There are good days and there are bad days. We all know that. Sometimes there are good weeks and bad weeks. I have good seasons and bad seasons. I’ll have good days in the bad seasons and bad days in the good seasons, but mostly I feel 2015-02-10 15.16.52good in fall and winter and horrible in spring and summer. It’s just the way it is.

That means that when my friends are all picnicking in parks, swimming at beaches, and throwing frisbees in fields, I’m at home feeling miserable. And when everyone hibernates in the winter, I feel much better and can finally go out. It sucks.

Still, I usually make the most of it. I convince people to go out in the winter, and I spend my time with the people who don’t mind so much. I also go to friends’ houses more, instead of making them come to mine like I do in the summer.

But that’s in a typical winter, and this winter is anything but typical. Three weeks ago I wrote about how silly people were acting as a storm approached. This is Boston. We get snow. We can’t panic every time.

Well, that was three weeks ago. Then the next week we got another huge storm. 2015-02-11 10.43.46And another the week after that. And another is due tomorrow. We’ve gotten more snow in the last few weeks than we usually get in an entire winter! The subway keeps shutting down, buses are running late, cars are buried (see that photo on the right? How many cars do you think are parked there? It’s more than 1….), sidewalks are narrow, curbcuts are blocked, intersections are dangerous as drivers can’t see around the mounds of snow, and for many people (including at least 3 of my friends) roofs are leaking. It’s a mess out there!

This means that 2 things are happening:

1) Plans keep getting canceled on the days of storms. I was looking forward to a singles party tomorrow night (Valentine’s Day) but that got rescheduled, and a brunch Sunday morning was canceled.

2) On non-storm days people just don’t want to go out, or can’t. My chronic pain support group usually has 15-20 2015-02-10 15.48.58people. Sometimes there are more or less, but it’s rare to have fewer than a dozen people there. Today there were 6. SIX!

Even my able-bodied friends find it difficult to get around these days. It’s just such a mess out there. Wait, I might have said that already.

So while I’m finally feeling pretty decent, able to walk around and get outside and do things, I find myself trapped at home, or unable to walk down slippery sidewalks, or not able to move my car, and there are very few people to spend time with.

They’re all looking forward to summer.

I’m just wishing for a milder winter.


Whether weather matters

August 1, 2011

Weather is a real pain in the you-know-what.  We can’t control it, we can barely predict it, and it can have a huge impact on our quality of life.  So many chronic conditions are affected by the weather.  People have said, “Why don’t you just move?”  Yeah, that’s easy for you to say.  Have you ever moved to a new city without knowing anyone there?  I’ve done it.  It’s hard.  It’s really really hard.  And the weather was great, but I didn’t like the city, so I was pretty unhappy there.  Where would I be happy?  And where would I even feel better?  I can’t be in a place that’s too hot and humid, or a place that’s too snowy and dark.  And since I’d need a job, and I’m not a citizen of any other countries, it would probably need to be in the U.S.  That’s pretty limiting.

I don’t want to move.  My family is here.  My friends are here.  I would hate to leave the people I care about.  But I know I’ll move some day.  Every summer is worse than the one before.  Every year I question how much longer I can stay.  My seasons in Boston are limited.  I love this town, and I’ll be sad to say goodbye.  Until then, I’ll enjoy it as much as I can.  And stay indoors with the a/c.


When I’ll feel Covid-safe around people

August 26, 2022

Two-and-a-half years into this damn pandemic, I’m still spending a whole lot of time alone, and it’s hard. I miss people. I miss regular socialization. I miss dating. Actually no, I don’t like dating. But I miss the potential for a relationship. I miss sex. I miss casually hanging out at a friend’s house, going to the theater, visiting to a museum, not having to rely on New England’s unpredictable weather to determine if I’ll get to see people. I miss parties and Meetup groups and all the other random in-person indoor stuff that I took for granted.

Yet, so many people are out in the world, acting like there’s no pandemic anymore, or like getting Covid is no big deal. Most others seem to be somewhere in the middle, being somewhat cautious but still socializing and attending work and school in person. A lot of my family and friends in the middle have been asking me when, if ever, I’ll be willing to go out again. I think they expect this question to trip me up, to prove that my expectations are unreasonable.

But the truth is, I have a mental list going of things that will make me feel safe enough to join my family for Thanksgiving dinner or to go to a play, and they aren’t at all unrealistic. I just wish they would happen sooner than they probably will. Here are some of mine and I’d love to hear yours, so I know what other excellent possibilities are out there.

  1. Widespread mask use. This wouldn’t make me feel comfortable in all situations, but in many. Today I called a dozen hair salons and the only ones that have people wearing masks are out of my price range. The others say they don’t have any protocols, no masks. WHY NOT?!?!? The pandemic is not over and they’re only prolonging things and making it harder for people like me. If everyone wore masks I still wouldn’t go to the theater, but I’d feel more comfortable at the grocery store. Please please please wear masks, people!
  2. Masks that 100% (or maybe 99%) protect the wearer. Speaking of masks, this would be huge. I’d feel much better about the 90% of unmasked grocery shoppers in the store with me if I knew that my own mask would provide all the protection I needed. Then I wouldn’t have to rely on others so much to protect my own health. Of course, these would also have to be affordable and widely available. And if they were reusable, that would be even better!
  3. Accurate tests. If at-home tests gave fewer false negatives, and if they gave positives as soon as someone was contagious, I would 100% be hanging out indoors with family and friends. Would I go to crowded events with strangers? Nope! But at least I’d get to be around people I love. And it would open up dating possibilities, too. I still wouldn’t want to go to restaurants, etc. on dates, but at least as we got to know each other, I’d feel safer being indoors alone and maybe even kissing *gasp!*
  4. Vaccines that prevent contracting Covid and/or transmission of Covid. Back in 2020, we thought vaccines would save us. We talked about herd immunity. The problem was that the vaccines we got don’t prevent anyone from getting Covid or from passing it along to others. Don’t get me wrong, I’m thrilled we got vaccines that reduce the likelihood of hospitalization and/or death. I just want more. If we had vaccines that stopped people from spreading Covid, I’d be hanging out with my vaccinated family and friends, because I wouldn’t have to worried about them giving it to me or about me giving it to them. If we had vaccines that stopped people from getting Covid at all, I’d be feeling much safer as I go out in the world, and then I’d probably go back to being in public spaces again.
  5. Vaccines that prevent long Covid and disease latency. It’s hard for me to explain to most people that I’m not worried about dying from Covid. I’m most worried about getting long Covid. And right now, the vaccines help me avoid dying, but they don’t help me avoid long Covid. I wish they did. Honestly, if long Covid didn’t exist and if we didn’t have a concern about disease latency (when symptoms might appear years or even decades later, like with post-polio syndrome), then I wouldn’t be so concerned and I’d be happy to at least be around family and friends, and I would consider being out in public spaces more. For me, this would be a gamechanger in a way that I find hard to explain to most people.
  6. A near miss: a cure for long Covid. To be honest, I’m not sure how much this would help at this point. Before I was worried about disease latency, a long Covid cure would have been enough to get me out and about again but now, unless it would also cure any future symptoms, I don’t think it would do the trick for me. There’s just too much at stake with the disease latency risk. I watched a loved one deal with post polio syndrome for years and the possibilities with Covid latency feel too real to me.

So that’s my current list. I think that some of these are more likely in the short term than others. #5 would be amazing, but I’m not holding my breath for that one any time soon. #4 feels more likely, but only if we don’t lose momentum in terms of funding research and innovation. The ship has sailed on #1. Let’s face it, too many people are selfish assholes. They don’t believe they’ll get sick and don’t care of others do. But #2 and #3 feel like they have potential, even in the near future.

Experts are already working on creating more accurate tests. Imagine what a gamechanger that would be! Sure, I still wouldn’t want to hang out with a lot of strangers, but it would open the door to feeling comfortable with family and friends. I’m thinking about all of the people I’d want to see who, right now, I’m not visiting with indoors. It would be amazing!

I don’t know if anyone is working on creating masks that better protect the wearer, but I sure hope that they are! I’d love to have more control over my own safety. Not only would I be able to spend more time with family and friends, but I’d feel more comfortable around strangers, too. No, this wouldn’t be the perfect solution, but it would open up the world for me and at this moment, that would be enough.

Even before the pandemic, I struggled with loneliness. I’m an extrovert who lives alone and who, due to health issues, often doesn’t go out for days at a time. I’m at an age where my friends are mostly married and have kids in addition to working full time, so they are understandably busy with their families when they aren’t at work. I get it, but it also makes it harder for me to spend time with them. That left me spending a lot of time home alone, taking walks alone, and doing activities alone. And that was before the pandemic. Now I’m so much more isolated and damn it, I just want to be around people! I want to spend the weekend with friends out of town, hug my mom, kiss a date, go to a party, and feel safe wandering the aisles of the craft store. Is that so much to ask?

For now, though, I’m sitting at home. Today I’m seeing a friend – via Zoom. It’s not the same, but it will have to do. And despite what so many others think, I’m not planning to sit at home alone forever. I am not wrapped up in fear with no foreseeable way out. I see a way out. I just need scientists to make it happen. Please.

What about you? In what ways do you think there could be a safe way for those of us who are at higher risk to socialize again? I’d love to hear your ideas!


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