I don’t have plans but I still won’t go out with you

December 29, 2013

I think that when most people get an invitation, they accept unless they have other plans or expect to have other plans. Sometimes they might need to schedule a day to just rest and take care of personal stuff. I used to schedule a “me” day Sunny Dayabout once every month or two so that I could relax, read, watch tv, answer emails, pay bills, etc. But things change when you have chronic fatigue.

My mom wanted to go shopping today. Since money is tight for me, she’s buying me a new winter coat for Chanukkah (thanks Mom!) Scheduling-wise, this seemed like a good day, but I’m tired and in pain and there’s just no way. So I told her that and she understood.

Sometimes the person who wants to get together is a friend I don’t know as well. They don’t ask it as “Do you want to go out tomorrow?” but instead “Are you free tomorrow?” or even “Do you have any plans?” The connotations are the same and they’re all socially appropriate, but for me they’re very different questions. No, I don’t have plans, but that doesn’t mean I’ll get together with you. I might want to, but I just can’t. It’s easy to turn down the invitation once, but it’s harder to do that over and over with someone who doesn’t understand the situation. Sure, I could lie and make up plans, but I don’t do that except in extreme circumstances. My health issues are hard enough; I’m not about to juggle lies on top of everything else. Still, it’s hard to get people to understand the validity of, “I’d love to get together but I’m going out two days before that so I won’t be able to go out again so soon.” To most people, that just doesn’t make any sense at all.

Of course, then there’s the awkward, “Yes I’m free, and yes I want to get together, but only if you come to my place.” That might sound nice to some – I’m inviting people over, after all. But the truth is, I ask them to bring their own meals because I don’t have the energy to cook for others; I barely have the energy to cook for myself! I don’t “entertain” but instead stay on the couch while we talk or play a game. Since many of my friends have little kids, coming to my place isn’t possible if they’re busy caring for the little ones. Plus, so many of us get around on public transportation and getting to my place can take an hour or more each way for some friends. A good compromise might be to meet up in the middle, but if I’m asking them to come to my place it’s because I can’t do that, so then I’m asking them to spend a whole lot of time traveling to see me. This is ok from time to time, but not every single time.

For the close friends and family, this is all ok. Sure, it’s cumbersome and annoying for all of us, but they understand. They know that when the sun is shining and they’re at the park with their kids, I’d so much rather be with them than sitting at home browsing the web. They know that I’d like to invite them to dinner and actually provide it. They know I will gladly go to their place on the few days that I can. But for everyone else, it’s a bit harder. I’ve noticed that I’m getting fewer invitations these days. When someone gets turned down over and over, I guess they feel there’s no point in continuing to invite me. I’d probably feel the same way if I was in their place. Still, I’m choosing to focus on the people who’ve stuck around. Those are the true friends who I really want to spend my time with. And if I got my health back tomorrow (if only!) then those are the people who I would continue to spend time with.

So instead of shopping for a new winter coat to replace my old, torn one, I’ll be writing blog posts, reading blogs, watching tv, and reading my library book today. It’s not great. Actually, it sucks. But I don’t feel that I have a choice. I’m just hoping I’ll be able to go out tomorrow, instead. I’ll be keeping my fingers figuratively crossed both for me and for you and we’ll be able to get out at least a little bit this week.


Skipping New Year’s Eve

December 28, 2013

There’s a lot of pressure around New Year’s Eve. Everyone is supposed to go out and have a ton of fun saying goodbye to one year and welcoming another. And it’s the one holiday that everyone celebrates.

But I’ve been thinking that maybe I won’t celebrate it this year. For the first time, I was invited to any parties. Plenty of friends have suggested getting together, but it would just be the friend, their spouse, and me hanging out. While I love hanging out with friends in a casual way, especially on New Year’s Eve, the idea of hanging out with a couple really doesn’t appeal. I do that all year long. I won’t want to do it again on New Year’s Eve. Besides, it would feel like any other night except we would stay up later and watch the ball drop on tv, and then I’d be extra tired the next day. What’s so great about that?

2013 was a rough year, and most of it was health-related. I’m hoping 2014 will be better, but who knows? Either way, I feel no need to celebrate the last year. Watching a movie and eating popcorn, then going to bed at a reasonable hour actually has some appeal. In other years, I felt like something wrong, like I was a loser, if I didn’t have plans by mid-December. This year, I’m avoiding plans. Like I said, I’ve had some invitations, but I just don’t know that I want to go out at all.

It’s 3 days away. I don’t know what I’ll end up doing. But I know that if I stay home it will be my choice. Either way, I’ll be hoping for a better year to come, one with better health for us all. It may not be perfect, but I sure hope it’s better.


Enjoying my boring holidays

December 24, 2013

Sometimes we all need a break, and today has been the first part of mine.

When I was kid, Christmas was the most boring day of the year. Sometimes we’d go to the movies or out to dinner at a local Chinese food restaurant, but mostly it was a day when my Christian friends were celebrating a holiday I didn’t celebrate, and my Jewish friends were out of town, so I had no one to play with.

When I got older, I spent several Christmases with boyfriends’ families, since I had (and still have) a habit of dating Christian guys. Then there were many years that I worked at a small company that didn’t give Christmas as a holiday. (Small companies are exempt from the federal holiday requirements.)  The rest of the staff took the day off but I wanted to save my vacation days, so I went in. It was great! I was the only person in the office Christmas Eve, Christmas Day, and most of the week. I cleaned out my email, emptied my inbox, sorted my files, and was incredibly productive. I listened to music and kicked my shoes off. It was actually really nice. It was probably my most productive week of each year.

Now Christmas is back to being boring. Most of my friends are out of town and the ones who are here are busy with holiday celebrations. But I decided to embrace the quiet instead of letting myself be bored.

I’ve been busy lately. Not busy by a healthy person’s standards, of course, but busy for me. By last night I was completely exhausted. I slept late this morning, something I always aim for but can rarely accomplish. I spent hours cleaning out my inbox, reading articles I’ve wanted to read, watching tv, and just relaxing. A friend posted on Facebook inviting everyone to her place for dinner, but I just didn’t feel like schlepping all the way downtown. Another friend invited me to join him and his wife for caroling. I didn’t want to schlep downtown and I especially didn’t want to carol, so that was easy to turn down. Then a friend invited me to her place to play a board game that we love with her and her husband. Now that one was tempting. I’d LOVE to do that! But not tonight. No, today is my day to rest, and I’m not going to leave the house unnecessarily. Besides, I know us. I know we’d be up late. And I need to rest. So I’ll be staying in.

Tomorrow Christmas and I figure it will be just like today. I’ll read and catch up and maybe doing some more cleaning up around my apartment. I’m being productive in my own way, keeping it small and simple, and I love it. Yes, I have a long list of things to do, but I’m ignoring most of them to read things I enjoy instead.

Boredom will come. A lot of my friends will be away through the weekend. I have a doctor appointment one day, and will spend some time with my mom one day, but by that’s it. By next week I’ll be anxious for friends to spend time with. But that’s ok. It’s temporary.

So for now I’m determined to make the most of these boring days. The first day has been great, and my only regret is that now I have to go cook dinner. For all of you not celebrating Christmas with family today and tomorrow, I hope your boring days are just as pleasant and relaxing as mine has been so far.


Chronic illness logic: clearing snow at 11pm

December 18, 2013

Everyone uses different criteria for when they’re going to deal with snow. Usually it involves some form of “when I have to.” When you have a chronic illness, though, you have to pace yourself.

I need to drive my car tomorrow. It snowed last night. If I clear my car off* tomorrow on my way out, like I would have back when I was healthier, then I’ll be too tired to go where I need to Blizzard 2013go. If I cleared my car this afternoon, I would have been too tired and in too much pain to do the other things I wanted and needed to do today, including seeing a friend tonight. So instead, I did it on my way home from seeing my friend, at 11pm. Sure, it was late. I was tired. I was sore. But that’s an even better reason to clear the car! This way, I’ll be going to sleep anyway. With any luck, I’ll feel better after getting some sleep. If I was going to be tired and in pain and wanted to leave the house anyway, this is actually a good time for it!

And that’s how I found myself clearing snow off of my car at 11pm tonight. It’s a logic that I think only people with chronic pain and chronic fatigue and truly understand. It sure makes sense to me!

*Thankfully a neighbor did the actual shoveling for me earlier today, so there was a clear path out of my parking space. But I still needed to get 6″ of snow off of the top of my car, the windshields, the hood, the trunk, and the windows.


Anxiety dreams that healthy people don’t have

December 15, 2013

My guess is that most, maybe all, people have anxiety dreams. Everyone’s are different, based on what’s happening in their lives. When I was in school, I’d dream about not turning in a research paper on time and similar things. Well, when you’re constantly sick, I guess it makes sense to dream about health-related things.

I’m thinking that I’m not the only one who has health-related anxiety dreams. If you have them too, please mention them in the comments. It’s nice to know we’re not alone!

I’ve had so many health-related anxiety dreams, it’s hard to remember them all. Here are just a few that I’ve had recently.

  • I dreamed that my doctors got mad at me for having my thyroid problems treated by a primary care physician (PCP) who’s not my PCP. In real life that’s what I’m doing, and it’s not ideal. My PCP is ok with it at the moment, but I do worry he’ll change his mind. But in real life, my doctors haven’t gotten mad at me because of it!
  • I dreamed I accidentally ate gluten and got really sick from it.
  • I dreamed that I was in a lot of pain. When I woke up, I really was in pain.
  • I dreamed that I borrowed my friend’s vaporizer and used her pot to help my pain. In real life, I borrowed her vaporizer and got pot from her yesterday, but I haven’t tried them yet. I know my subconscious is as anxious as the rest of me to see if it will help.
  • I dreamed that I got much sicker.
  • I dreamed that I got much better. (Ok, this one isn’t about anxiety, I admit it.)
  • I dreamed many times about confrontations with various doctors about various things. In reality I’ve had many confrontations, but none as serious as what I’ve dreamed about.

When I was healthy I’d have anxiety dreams too. But somehow these feel worse. They aren’t about a temporary situation or about something I can change. It’s frustrating, but I guess it’s good that my subconscious is finding a way to deal with it.

What are some of your anxiety dreams?


Dreams of winning the hypothetical medical lottery

December 13, 2013

I keep reading and hearing about the big $400 million lottery jackpot. I thought for a minute about what I’d do if I won (unlikely, since I didn’t buy a ticket) and I was surprised by what came to mind.

I used to dream about winning. I figured I’d quit my job, buy a house, travel with friends, get a couple of dogs, and support20120809_220808 charities. Those were the first things that came to mind. Those are all still on my mind, but now something else comes to me first: doing all the health stuff I feel I can’t afford to do right now.

Money doesn’t solve everything, but it sure could help! I wrote about this 2 years ago but life was so different then. And back then, I didn’t know what was causing my health problems. If I had that money now, I’d immediate see the doctors who don’t take insurance, run all the lab tests that the insurance companies don’t want to cover but that I know I need, and take the extra supplements I’ve been avoiding. That’s already thousands of dollars every year. Then I’d go back to physical therapy and start getting therapeutic massage every week. I would pay to see a doctor for a medical marijuana prescription and buy a high-end vaporizer to help with the chronic pain. I would get a dog, which would do wonders for my emotional health (and I could then afford a dog walker for the days I needed someone, which would be most days.) I could get a home with central air conditioning so I wouldn’t feel as horrible all summer long. Of course, I wouldn’t have the stress of worrying about my future finances, and that would really help with my cortisol levels. I would update both my eyeglasses and my orthodics more often. And of course there’d be things like buying only organic produce.

This flashed before my eyes in an instant, and then it was gone. I didn’t win the lottery. I need to save the money I have in case my benefits are pulled away, which could easily happen any time. And I don’t have enough money to make all of that happen anyway.

It’s sad but true: good health costs money. I’m lucky to be doing as well as I am, to be honest. I’m thankful for a safe home, good health insurance, and a supportive family. But $400 million might not be so bad to add to that.


Making the rest of the world wait

December 11, 2013

The past week has been really stressful, both emotionally and physically. That’s why I’m typing this at 1pm in my pajamas. I’m not talking about the clothes I wear to lounge around the apartment, but the ones I slept in last night. I have not showered or brushed my teeth. I have no had lunch. I have not gone grocery shopping, visited my grandfather, or run the errands that I planned to run today. And I won’t.

Some things can’t wait. That’s true. I have to pick up a prescription at the pharmacy. It doesn’t have to happen today, but it can’t wait forever. Maybe you have to get to the mailbox with your rent check or cook a meal. But there are so many things that we think must happen today and the truth is that the world won’t care if we put them off for a few days. For me, those things are the ones I just listed. Yes, I want to do all of those things. Sooner or later they all have to happen. I planned to do them today, but waiting is ok, too.

I’m putting my health first. I feel lousy. I spent all day yesterday at home and resting. That helped a lot! I had hoped that one day would be enough, but it wasn’t. And that’s ok. I mean, I’m not happy about it and it sucks, but it’s ok. It’s not the end of the world. It’s not the end of my world. I will spend another day at home, resting. If I have to cancel tomorrow’s plans to rest more or to do today’s errands, then so be it.

I’m putting my health first, and I know that’s the right decision. Everything else can wait. No one will mind and in the grand scheme of things, it just won’t matter.


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