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.

2 Comments | Expectations, Frustration, Limitations, Medication, Rants, Unpredictable | Permalink
Posted by chronicrants

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!

 

2 Comments | Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Doing too much and not enough

September 13, 2016

I miss you. I’ve been wanting to write and I just haven’t had the time. I’ve been too busy, but I don’t feel like I’ve been doing anything.

I want more time alone, but I’m lonely and miss hanging out with friends.

I need more time to work on my new business, but I’m working too much.

I have a million and one things around the house that need to get done. I can’t find time to just sit and do them, yet I feel like I do nothing but sit and work on chores.

Why is this? If I had to guess, I’d say that my fatigue is worse and it’s throwing everything out of perspective. I don’t feel like it’s necessarily worse, and yet, I’m tired. So tired. Much more often.

I’m constantly busy, constantly doing things (during my feeling-not-completely-like-shit hours, that is) and yet, nothing seems to get done. Is some of that because I spend too much time on Facebook? Sure. Does computer spider solitaire get in the way? Definitely. But it’s not only that. That might account for short bits of time, but that doesn’t explain why I still haven’t gone over last month’s bills, picked up a video at the library, or put away the laundry that’s on the drying racks.

I feel the pain, but it shouldn’t be stopping me. It must be the fatigue.

Because even though I resist it, even though I feel like that can’t be the case, I know it is. Whenever I feel like I’m constantly doing stuff but nothing is getting done, it’s the fatigue.

Damn you, fatigue!

2 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants | Permalink
Posted by chronicrants

Sugar, fat, and pain

September 7, 2016

Chocolate! Potato chips! Cookies! Pizza!

I’m in pain, and I want sugar and fat and I want it NOW!

But why?

To some extent, I know that I want sugary and fatty foods more when I’m in pain because they’re comforting. I’ve read the research about how sugar affects the brain in a similar way that heroin does. I get it.

And when the pain is especially bad, I allow myself to eat more junk than usual. So maybe it’s also a bit of that association. Those are probably why I wanted sugar this morning.

But now it’s different. Now it’s a need more than a desire. Like when I crave a hamburger and then a few hours later I get my period. My body is saying: you’re about to lose blood, you better eat some iron. It makes perfect sense. But I feel that same kind of craving right now for fatty and sugary foods and I can’t imagine why.

Are my energy reserves low from fighting the pain? Is this my body’s way of telling me I need to beef them up? (so to speak….) Is is something else along those lines?

I’ve learned a lot about my body in recent years, but this is one mystery I don’t know how to solve. It will have to wait until later though. Right now, I need to go forage in the kitchen….

What about you? Do you experience these kinds of cravings? What do you think causes them? How do you handle them?

2 Comments | Expectations, Pain, Symptoms | Permalink
Posted by chronicrants

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