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.

The all-too-elusive “day off”

December 4, 2019

I don’t have a job, but I work damn hard. Every day is long and full. Some days I go to medical appointments; some days I see friends, though not as often as I would like; some days I stay home and work on a long list of tasks. None of those are relaxing. Even when we don’t work traditional jobs, we need days off. As I sat down to write today, this felt familiar, so I did a quick search on this site and found that I’ve written about this before. In fact, I’ve written about this several times, and the past two were last December and the December before that. Hmm. That might be telling me something.

2019-12-03 09.08.11

I have been making more of an effort to give myself space for relaxing time. In August, during a couple of abnormally not-incredibly-hot weeks, I took several afternoons to sit outside and read a book or work on some writing. It was lovely. But a full day? That was rare.

This week we got a snowstorm. In the Boston area this isn’t odd, but it doesn’t usually come so early. I saw the forecast, looked at my calendar, and decided that I needed to take advantage of the strange weather. I was exhausted. I needed a break! And I had a big week coming up, too.

So I took a day off. I didn’t feel too sick to do things; I simply didn’t do them. I puttered around the house. I did some laundry, but now that I have laundry in my apartment (such luxury!) that’s not much of a chore for me. I chatted with a friend via video for a couple of hours. I spent at least a couple of hours reading a novel. I baked cookies. I watched the beautiful snow falling outside, clinging to trees and coating cars. My plan had been to spend a few hours watching tv while crocheting in the afternoon, but somehow I never found time for that. I still did it after dinner, though, like I do almost every night.

Several times during the day, I felt at a loss. I was supposed to be doing something, right? What was I supposed to be doing? What was it? I kept looking at my “to do” list for the day, which is always on my desk. But this time, it was mostly empty, just containing reminders to clear snow off my car, read a book, relax.

I somehow filled the day, and felt so good by the end of it. I needed that. The next day came part 2 of the storm and I wanted to take another day off, but I had too much to do. Still, it was a reminder that I need this. We all do. We need days when we aren’t trying to get lots done. I may not do a lot in a typical day by most people’s standards, but for me it’s a lot. It’s now 3pm and I have made several phone calls, gone to physical therapy, gone to the bank, answered some emails, eaten lunch. For me, that’s a lot, but it’s more than that: it’s the obligation. What I need is days without those obligations. Days of freedom, where I can do whatever I want, whenever I feel like doing it. Again, I think that we all need that sometimes.

Not to sound like a broken record (do people still even know what that means?) but I’m going to make an effort to take more days off. So far, I have succeeded in giving myself afternoons without obligation. Now it is time to give myself more full days without obligation. These will be days for myself, with no appointments, no plans, no lists of tasks to be completed. It can all wait. One more day won’t cause problems. It’s time. So from now on, I will aim for one day off every month. Wish me luck!

Do you take days off like this? Do you find it difficult to schedule them in, or easy to do? Please comment and share your experience with days off while disabled.

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