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.


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.