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.

2 Comments | Expectations, Fatigue, Frustration, Kindness, Limitations, Medication, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

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!

4 Comments | Decisions, Educating, Expectations, Fatigue, Frustration, Medication, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Feeling guilty for feeling better

October 26, 2016

These friends are some of the only people in my life who knew me before the symptoms began. They understand more than most. But some things are still so hard to explain.

We were sharing all sorts of things, and I started to talk about my support group, and some of the emotions that come up when I’m there. I talked about many things, but it was my talk of feeling guilty that they latched on to. They tried to convince me that I shouldn’t feel guilty.

Easier said than done.

The thing is, I know I shouldn’t feel guilty. I know it in my head, but my gut feels guilty anyway. One friend put it best: it’s like survivor’s guilt. Why should I have improvement when someone else doesn’t? Still, they didn’t truly understand why I would feel guilty.

But I do.

I look around at my friends and acquaintances who are sicker than me, or who are in more pain, or who have a worse prognosis, and I feel guilty that I’m doing better. When I was much sicker just a few years ago, I sometimes resented and often envied the people whose health had improved. Now I’m one of them. And it’s not because I worked harder at it or am more deserving. Sure, I worked my butt off, but a lot of it is luck. Some people have illnesses that will never improve. I was lucky to not be one of them (though for a while I believed I was.)

I will never be completely healthy. I don’t expect healthy people to feel guilty around me. But I do feel guilty when I can carry something that a friend can’t, or I can go to an event that they can’t. And I’m jealous when a friend with chronic illnesses can do things that I can’t.

It’s a process, though. I have had to deal with many difficult emotions surrounding these health issues for most of my life. Over the years I have dealt with many of them. Yes, I need to deal with the guilt, but it’s ok that it will take some time. It’s ok.

I appreciate my friends’ intentions. They want what’s best for me, and they feel that doesn’t include feeling guilty for being less ill or less disabled than someone else. And they’re right. But it’s not that simple. I need to work through the guilt in my own time. And I know I’m not the only one.

I’m sure others feel guilty at times, too. Are you one of them? It would be awesome if you would share your own feelings around guilt in the comments. I think I would really benefit from hearing about other people’s experiences. Sometimes knowing I’m not the only one going through something can make all the difference in the world.

2 Comments | Educating, Expectations, Rants, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

The pain of going to the movies

July 23, 2016

I think I went to the movies once last year. Or maybe it was the year before. When people ask, I say that I don’t like going to the movies because of the cost, or because there’s nothing good to see. Those things are true, but they aren’t the real reason. They’re just easier to talk about.

The truth is that even when there’s a movie I really want to see and someone else has offered to pay, I still decline. Because no matter how good the movie is, it won’t be worth the pain of seeing it.

To be fair, I haven’t tried the new reclining seats yet. Maybe those would be better. But regular movie theater seats are very uncomfortable. Plus, there’s the problem that I have to sit in one spot for over 2 hours!

Friends have suggested that I sit on the aisle so I can get up during the movie, but I can’t imagine that going well. The people around me would not be too happy if I was getting up, walking around, and stretching during the movie, and I wouldn’t blame them! I could sit in the back row on the aisle…. but only if the seat wasn’t already taken. I’d have to arrive really early to be sure. That would mean even more time in the theater.

And again, it’s just not worth it. Sure, I could arrive really early and sit in the back row on the aisle, even if the people I was with didn’t want to sit there. I could get up during the show to stretch and walk around. I could leave the theater and walk up and down the hallway. I would miss parts of the movie. I’d be distracted. And in the end, I’d still be in pain. So please remind me, why exactly would I want to do this? What would I gain?

I have missed a lot of “great” movies in recent years. And I don’t regret it at all. When I think about what’s missing in my life, “going to the movies” isn’t anywhere on the list. It doesn’t even come to mind. When I think about the things I’d like to do in the coming months or years, again, “going to the movies” isn’t on the list. There are too many other things I’d rather be doing.

I do watch movies, though. Sometimes I watch them on tv. I have a lot of dvds that I rarely even find time to watch. I can get movies from the library.

The difference is that I can watch them all from the comfort of my own home. I can pause them when I need a break. I can get up and move around as needed. I can sit more comfortably. I can reposition myself as needed. I can stop halfway through and finish the rest the next day. This all makes it totally worth it.

But going to the theater? Not at all.

[Side note: I’m going to the theater tomorrow to see someone I care about perform the lead in a play. I know I’ll be in pain, but I believe it will be worth it. Wish me luck!]

What about you? Are you able to go to the movies? Is there something similar that you skip out on altogether because you feel it isn’t worth it, even though people insist you should try anyway? Please comment and share your experiences!

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , | Permalink
Posted by chronicrants

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