Difficult elections and self-care

November 10, 2016

For the past 2 days, a lot of my friends have been writing and posting on Facebook about self-care. These last 2 days have been incredibly stressful for many of us. We’re scared, we’re uncertain, we’re worried. And that’s precisely why we need to take care of ourselves. All of us.

But when you have a chronic illness, self-care takes on different dimensions. And in some ways, I think it makes things easier for me, because I already know what to do.

When I was first diagnosed with an autoimmune disease, the doctor told me to avoid stress. I laughed. Oh wait, was he serious?

Over the years, though, I’ve learned how to do it. It’s not that I completely avoid stress, but I manage it better. I’ve learned not to sweat the small stuff as much. When I do feel stress, I know what will calm me. I address issues head-on so they don’t nag at me. I take deep breaths. I distract myself. I put things in perspective. And generally, it works.

I also know what to do when it comes to physical self-care. I know that I need a lot of sleep and that I need to eat certain foods while avoiding others. I know that I might need to take extra supplements or raise the dose of a medication.  I know how to rest while awake.

It turns out, I know a lot more than I thought I did! And I bet you do, too.

This week is more stressful for some people than for others. But we all experience stress from time to time, so it’s important to learn how to read our bodies and to figure out what will work to counteract that stress.

I am watching my friends cry, hug, and attend vigils. I did the first two. I can’t do the last. The vigils would help me emotionally for sure, but not physically. And on balance, it’s better to skip them, even though I’d really rather attend.

Last night when I found myself crying alone in my apartment, I texted a bunch of friends until I found someone who could talk. We had a long chat on the phone and in the end, I felt much better. Today I visited with another friend and got great conversation and a few good hugs. I don’t usually hug people during flu season but again, on balance, it was worth it.

We all need to find our balance.

I want to believe everything will be ok, but I know it won’t. As a queer person, I see difficult times ahead on many levels. As a Jew, I see anti-semitism increasing already. As a woman, I worry about an increased risk of sexual assaults, not to mention further legislation that affects my body. And as a chronically ill disabled person, I worry about losing my health insurance and my disability benefits. As a person, I worry about the future of our country and the hatred that this election has bred. Among so many other things.

So that is why I am about to step away from my computer, put on a happy, silly movie, and knit. Because for me, that’s the perfect form of self-care.

How are you taking care of yourself? What works for you to handle stress? Please comment and share!

As a final note, I want to say that I’m not looking to start a political debate about how the election turned out. This is about handling feelings and stress. That’s all. Hateful comments will be deleted, because that’s part of self-care, too.


Feeling better but not better enough

November 4, 2016

My doctor ran through my symptoms. How’s x? How’s y? And what’s new with z? Standard stuff. And to each one I said I was doing much better these days. Stable. Feeling ok.

So then why do I still feel so limited?

My pain is lessened to the point that I can completely ignore it – as long as I stay within my limitations, of course. No riding a bike or lifting heavy babies.

The nausea is gone. This is the best thing in the world!

My period sucked big time, but that’s over and I won’t have to deal with it again for 2 more months.

Even my fatigue isn’t as bad.

So why can’t I work a full time job? Why can’t I take a really long walk? Why can’t I travel? Why can’t I clean my apartment?

And the answer is, it’s not enough.

I’m feeling so much better than I was a few years ago, but I still have a long way to go. My friends take a walk and I can’t keep up. I have a fun afternoon and need to lie down to rest partway through. I cook dinner, and I’m in pain from standing and fatigued from the activity.

I’m excited for the progress. Really. And also frustrated at my continued limitations.

Will I ever see further improvement? Am I kidding myself if I keep trying?

I don’t know. But it sure beats the alternative: giving up.

There’s no better option. I have to keep trying. And even though it’s not enough, better is still better. And I’ll take it.

 


Using instinct to set limitations

October 31, 2016

Sometimes there’s no good answer to “Why can’t you do that?” It’s not as simple as “My doctor told me not to” or “I’ll be in too much pain.” Sometimes it’s a gut instinct response. I just know it’s a bad idea, even though I can’t put into words exactly why.

That’s how I feel about traveling right now. I think I can do it. I tell myself I’m ready. But when it comes to it, I feel like I shouldn’t. For a while I thought fear was holding me back. And it is. That’s definitely part of it, but not all of it.

Last weekend was a good example. I did everything “right.” I packed my bag in advance as much as I could. I took an extra adrenal supplement. I took various other supplements and medications that I thought would help. And they did. That’s why I felt horribly ill, but not so bad that I started to think death might be better. That’s the difference: I didn’t think about death.

So it was an improvement, but it still wasn’t fantastic. I felt like crap for hours, despite being super careful. I monitored and moderated my activity levels. I did everything right. But it wasn’t enough.

Last weekend’s trip involved a 3 hour drive – and someone else drove.

What would happen if I flew 5 hours? A friend wants me to visit. They’ve offered to pay for the plane ticket for me. I’d love to visit, but is it worth it? It’s a long flight. In tiny, uncomfortable seats. It could be longer if the flight is delayed. There’s time in the airport, plus getting to and from the airport. There’s the time change – a 3 hour difference.

How would I feel? Worse than after a drive? Certainly. I wouldn’t be able to bring cannabis on the plane with me, so that would make the following hours significantly worse.

In the end, though, I’d survive it. I always have. So why not go?

Because my gut tells me not to. My instinct is that I’d feel horrible for at least a few days, and by the time I started to feel more or less like myself, I’d be on the plane back home. It’s not worth it. Not now, at least.

The problem is that it’s hard to explain all of this in a way that makes sense to other people. I try, and they say I should just do it and it will be fine. I’m letting my fear stop me. I’m thinking about it too much. I should just go and have fun.

That all sounds great. But they don’t live in my body. I know my body. And I’d rather follow my instinct.

Do you have times you follow your instinct and can’t put the reasons into words? How do you explain those things to people? Please comment and share your experiences!


Packing a small suitcase is no longer an option

October 20, 2016

I used to travel constantly. And when I wasn’t traveling, I’d often spend the night at my IMG_20161020_202419.jpgboyfriend’s house. So I didn’t think much about packing. Sure, a big trip overseas required more thought, but short trips closer to home were easy. I’d throw a few things in a bag and be on my way.

I’m not sure when exactly that changed. It’s something I think about every time I pack now. Even a night away involves packing a full suitcase, instead of throwing a change of clothes and a toothbrush into a backpack.

Tomorrow I’m leaving for a weekend out of town. 10 years ago that would have meant throwing a few things in a small bag right before I ran out the door. I never understood why anyone would spend more than an hour packing for any trip. Now I get it.

I have a packing list, and I’ll be checking it closely. There are clothes and toiletries, of course. A novel and some knitting, definitely. Obviously a phone charger and, based on the forecast, an umbrella. There are more common things, like my spare glasses. I wouldn’t go far from home without them.

Then there’s my CPAP. And I have to pack an extension cord, because I’m not sure where the bed will be relative to a power outlet. There’s a long list of medications, including the ones that are easy to forget to pack, because I take them at all times of the day. There are my “just in case” meds, too, the ones I don’t take every day, but if I need them, I want to be sure I have them on hand. There’s special food that works with all of my food allergies. A heating pad for pain. Knee braces in case my knees act up. The blue light to help with my sleep disorder, not to mention the nice side effect of also helping my seasonal affective disorder, which is acting up now that we’re well into autumn. Far too many clothes, because my body doesn’t regulate temperature well and I could be sweating or freezing, regardless of the actual temperature. And there are probably one or two other things that I’ve forgotten.

It’s two days and I won’t be bringing a backpack. Instead, I’ll have my full suitcase, expanded so my pillow will fit. It has to be a suitcase with wheels, so I can get it in and out of my apartment building. I’ll also have a separate case for the cpap, and another bag for my food. Because now travel requires a lot more than a change of clothes and a toothbrush.