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.

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How a weekend away is a 2 week ordeal

October 2, 2017

I’m going away this weekend and I’m super excited!

I used to travel all the time. 2 months at home felt like FOREVER. I could pack an overnight back without even thinking about it. I got on a plane multiple times each year and did some weeks and weekends within driving distance. A weekend away in the Berkshires, less than a 3 hour drive away, would be no big deal.

But that was then.

And this is now.

Now I have to plan. I am being super careful about washing my hands and avoiding germs. I can’t get sick now!

I need to bring food with me. I will be with friends and some food will be safe for me to eat, but I need to bring other food. So I went to the grocery store today (Monday) and carefully planned out what I will make and which days I will make it. I also promised to bake cookies to bring, and I can’t do big cooking on the same day I bake, because I won’t have enough energy for that, but I can’t make anything too far in advance because I want it all to be fresh.

The day before the trip I will do some packing, but most of my stuff (my ASV (which is like a CPAP), my medications, toiletries, and more) can’t be packed until the day of. I need to ration my energy that day. Thankfully, I only have to drive half an hour to a friends’ house that day and then she will do the rest of the driving from there. Still, even being a passenger will be tiring and painful.

I am already thinking about how to handle my food and medications on the day of the trip. I always feel like shit the first night I travel. So I am being careful to bring everything I need to take it all at the right times: I will take something to help with the pain and the nausea when we start to drive, something else for the pain when we arrive, then something else for the nausea a few hours after that. Between medical cannabis and pepto bismol, the right foods and lots of rest, I am hoping really hard that it won’t be too miserable. Thankfully, I will be with friends who will understand if I can’t hang out with them that night.

I have scheduled my medical appointments around this trip. I was able to get a physical therapy appointment just a couple days after I return, so hopefully that will help with the pain from the long car ride and sleeping in a less-than-great bed.

My calendar is empty for the first 2 days after my return. That will give me time to rest and recover. I will get a lot of sleep, watch tv and movies, crochet, and read. If I feel up to it I will do more, and if not, that’s ok too. During my recovery time, I still need to eat, and I might not be up to preparing food, so I am making sure to cook and freeze food now that I can eat when I return.

I want to travel more. I really, desperately do. But then I remember what a trip like this is like. I can manage it ok, because it is only two days. I will leave at noon on Friday and be home by 5pm on Sunday at the latest. And I won’t be flying. I know it would be much harder if I was flying, for many reasons. It would be more painful. I might feel anxious at being “trapped” on a plan. Not to mention, I wouldn’t be able to bring any cannabis with me, and I can’t imagine how I would manage my symptoms without it.

At the same time, a friend and I are trying to schedule another weekend that I can visit her. The drive is less than 2 hours, but I would be driving myself. She would provide food I could eat during the entire visit, but aside from that, everything else would be the same. Resting for days in advance, blocking out days afterwards for rest, figuring out medications and other things to help alleviate my symptoms while knowing that I will almost definitely feel like shit the night that I arrive.

Sometimes it doesn’t seem worth it. But I know it will be in the end. Even thought it won’t be easy. It won’t be like it was before. But hopefully it will still be fun.


When triggers feel absurd

August 18, 2017

Some triggers seem reasonable. If I fall and land with any pressure at all on my hand or wrist, my wrist pain fill flare for days, weeks, or months. If I exercise too much, my pain and fatigue will flare. Some triggers make sense but piss me off: like eating lunch.

Yes, eating lunch is a big trigger if I don’t do it right. As it turns out, eating and digesting food takes a lot more physical energy than I would have every guessed back when I felt healthier.

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If I eat standing up, I’ll feel sick. If I eat too fast, I’ll feel sick. If I eat at the wrong time, I’ll feel sick. If I eat and don’t rest afterward, I’ll feel sick. And “sick” can mean a few different things.

Take Wednesday for example. I had a doctor appointment at 1:40. I needed to leave by 12:40. But I wanted to make a quick stop at the library on the way, so I figured I would leave at 12:25. I usually eat lunch around 1pm, but instead I ate at noon, and I ate quickly. The second I finished eating, I ran out the door. Oops. I ate fast *and* didn’t rest afterwards. The nausea and fatigue set in fast. I was in pain. I felt horrible. But I had to get to that doctor appointment.

I pushed through. I didn’t have the strength to multitask, so I didn’t turn on the audiobook I wanted to listen to. I focused. I managed to drive safely but miserably. I went to the bathroom before I checked in, and a lot of my lunch left my system – not properly digested. Then I asked to wait in an exam room instead of a waiting room. Thankfully, they had a room available and I was able to lay down.

After laying down for a bit I felt much, much better. The nausea was gone, the fatigue was improved. Still, I took it easy the rest of the day. My appetite didn’t come back until the following night.

I know that lunch wasn’t the only problem, just the final trigger. My stress about what’s happening right now (Nazi marches!?!) and the weather (very humid) primed me. It was lunch that set me off.

It pisses me off that I can’t eat an early, quick lunch and then run out the door. But then, I also should have known better. I knew that could be a problem, but I did it anyway.

Still, I feel good about one thing: instead of pushing through and trying to “brave it out,” I asked to lie down. And it made ALL the difference.

Learning to ask for what I need has been invaluable. I don’t always do it, but when I do, I feel good about it. Now I just need to find ways to eat lunch before a doctor appointment that don’t have such terrible results. (And yes, eating after the appointment would have been just as bad – I have a very narrow window to work with.)


The never-ending guessing game of boundaries

July 25, 2017

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Having chronic illness means accepting limitations. For almost two decades, my limitations made life more difficult, and they prevented me from doing some things, but their impact was limited in its own way. Then things changed.

Today I want to go to the gym and ride the stationary bike at its lowest setting for 10 minutes. But I’m not sure if I’m up to it. That’s one kind of limitation. That bothers me, but not as much as the other kind of limitation.

I want to live life on my own terms. I want to earn a living and go out more with friends. But mostly I want to travel.

Yesterday a friend told me about a trip she is planning. She knows that it is beyond her chronic illness-produced boundaries, but she is taking a chance by going anyway. And it made me question, not for the first time, if I should take more risks.

Part of me thinks I should. My doctor thinks I could. And I’m tempted to just pick up and go. But then I get scared. What happens when I inevitably feel sick? I won’t be able to bring medical marijuana – the only thing that helps – with me. Is it worth taking a trip, when I will probably feel like crap for half of it, and feel horrible when I get home? Will I be able to enjoy myself enough for it to be worthwhile?

But then I wonder, what kinds of regrets will I have if I don’t go? My symptoms will probably get worse over time, not better. Now travel feels difficult, maybe not worthwhile, and scary. At some point it will be completely impossible. Don’t I owe it to my future self to take a trip today?

Sometimes I think I should try doing something small to test the waters. But those smaller trips feel boring. If I’m going to put myself through hell, shouldn’t it be for something fantastic? Sure, I could go to Washington D.C. for the 3rd time, or to Nashville (which I’ve never had any interest in) for the first time, but it would be so much more fun to go Sweden or Norway or Iceland! Those are places I have wanted to visit for years, and I would have so much more fun there. If I feel up to doing anything.

And of course, there’s also the money issue. If I had gobs of money, not only would I not stress out about money, but I could buy certain comforts: a first class seat in the plane, a nicer hotel room, a rental scooter for when I don’t feel up to walking. Instead, I question if I should take money out of my savings for a trip at all, even one without those extra comforts. Then again, I might regret it if I don’t. I probably will.

So these thoughts are spinning around my head for the millionth time. I know some people with chronic illnesses travel. I know others don’t. I know it’s a personal choice and I need to be the one to choose. But that doesn’t make it any easier.

Because in the end, it’s not about the trip itself. It’s about the fact that my world has become very small, and I feel the need to open it up. I need new experiences and excitement. I know that would sustain me in a million mental and emotional ways. I just wonder what it would do to me physically.


Oh summer, why must you torture me?

July 5, 2017

It is a bright, sunny, not-too-hot day. I should be taking a walk outside. Sitting in the sun. Enjoying the weather. Instead I had to cancel plans I was looking forward to so that I can sit inside and feel lousy. Again.

I don’t know what it is about summer. I just know that it kicks my ass every year. This year is actually not as bad as usual. I have been in better health, and I assume that’s why. Instead of feeling crappy starting in March or April, I made it to June! Of course, we had an unusually cool May, but still….

But not it’s July and I feel like I’ve been hit by a truck. I increased my adrenal supplement for a few days and that helped, but when I lowered it, the fatigue rushed back. I’m seeing my naturopath in the morning and I have a feeling I should raise that supplement dose for the rest of the summer. It sucks, because after many years, we had finally just lowered it a few months ago! I was so happy to lower that supplement. It’s not something I should be on permanently. The idea is to keep lowering the dose until my adrenals can do the job themselves. We want to avoid long term dependency.

So much for that.

Yesterday was a lovely day. It was sunny and not too hot – perfect swimming weather. Plus it was a holiday, so most of my neighbors were away. I had no plans at all. The perfect day to finally try out my building’s pool. But there was no way. I felt like shit. I texted my friends that I wouldn’t be joining them, and I spent all day in pajamas. I watched many hours of tv. I didn’t do the cooking I wanted to do. Or the laundry. Or the putting away of clutter. Instead I watched tv and crocheted and knitted. Thank goodness for my sedentary yarn hobbies!

Being stuck at home is nothing new. I can handle it. The hard part is that the summer is when everyone else is out and about! All winter I felt better, but no one wanted to take walks in the snow with me. And I don’t blame them. But now they’re all out doing things, and I can’t join in. I’m stuck inside. And I like being out in the sun! I love it, actually. But on the hot days it’s impossible and on the not-too-hot days I usually don’t have the energy for it.

My new apartment has a patio. I’m hoping to spend at least a few minutes sitting out there later. At least I would get some fresh air.

But taking a walk, going for a swim, or keeping my date for tonight? No go. Because even on a not-too-hot, not-too-sunny, not-too-anything-bad day like this, I still feel like crap.

Maybe one day my immune system will be able to handle summer. But not today.


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.


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.


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