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!

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.

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.

What the hell, Mother Nature?

October 17, 2016

Like many people with autoimmune diseases, summer is not my friend. The heat and humidity combine to make me miserable, and there’s very little I can do about it. I stay in air conditioning. I rest. And I feel lousy.

And then fall comes, and all is right with the world. In the last few weeks, I saw a huge transformation. My mood improved, I was in less pain, I had more energy. I felt better, I looked better, life was better!

I was loving every single minute of it. I could take walks outside again. I could sit outside and read a book. Things were GOOD!

And then they weren’t. Mother Nature got confused. She forgot that it’s supposed to be autumn here in Boston. She forgot about our low humidity and cooler temperatures. And she went back to summer.

It’s not that hot, thankfully. But it’s warmer than it should be. And it’s humid. Very humid. A few days ago it was 58 degrees and dry, and later this week it will be 82 and humid. What the fuck, Mother Nature?

Even worse, I can’t use air conditioning. I have window units that have already been taken out for the season. They’re in the basement. If I could snap my fingers and have a magic fairy godmother put them back in, I would, but unfortunately that’s just not an option.

So I feel crappy and I don’t even know how I feel crappy. I’m in more pain, but not much more. I’m more fatigued, but not much more. My mood is worse, that’s for sure. But I can’t put my finger on any particular reason why this weather is so unpleasant for me. I wish I could.

The windows are closed. No fresh air. It’s more humid outside than inside. No fans in the windows, either. No long walks. No short walks. Not much of anything. Just waiting. Waiting for the weather to improve, because what else can I do?

And in the meantime, it’s screwing up my schedule. It’s too hot and humid to do laundry. It’s too hot and humid to cook. It’s too hot and humid to do any of the things I most need to do.

I was loving my jeans and fleece jacket. I’m not ready to go back to shorts and tank tops. So please, Mother Nature, please please please remember that this is fall, and give us back the cool, dry days!


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