Seeing the good in others

May 23, 2013

A while back a friend had to have a planned surgery with a long recovery time. He told friends about it in advance, letting them know that he’d appreciate food, help with errands, and just being kept company during his recovery. He set up a calendar online where people could sign up for time slots to visit him. Everyone stepped up and he was well cared for, without his partner being completely overwhelmed with taking care of him while still working her full time job and managing the house.

When you have a chronic illness, it doesn’t work that way. The needs aren’t short-term and they’re often not as predictable. I never know a month in advance which days I’ll need help preparing dinner, going grocery shopping, or picking up prescriptions. I don’t know in advance which days I’ll be stuck at home and lonely and wanting company. And even if I did know these things, it’s hard to ask for help month after month, year after year, decade after decade. I don’t want to burden anyone.

That’s why I think that one of the few benefits of a chronic illness is that you see how amazing other people can be. I’ve had friends pick up groceries for me, bring me cleaning supplies, and get my prescriptions when I wasn’t able to get to the pharmacy. Every spring people put in my air conditioners and every fall they remove them. Friends change their plans so they can keep me company at my place. The amount of support has been incredible.

We’ve had some humidity this past week and it’s been pretty unpleasant. A friend had said he’d put in my air conditioners for the season, but he doesn’t live very close and won’t be by for a another week or two. I could wait, but already I’m sleeping badly and I’m having trouble breathing today. Those aren’t good, and they definitely won’t help my poor adrenal system to recover. What to do? I put out a call on Facebook and I was stunned at the response. I had figured it was just a more passive way of asking the usual folks for help. Instead, I got offers from people who I haven’t seen in years! I got offers from people who are more acquaintances than friends! They just want to help. How amazing!

So suddenly I had this long list of people who could help me. I had one scheduled for Sunday. Others said they’d help next week if my Sunday person fell through. There was still the original offer. And then today a friend called to say he’d come by to drop off something he’d borrowed. I’d thought about asking for help with my air conditioners but I didn’t want to impose since he’s already helping me out with something else. So imagine how floored I was when he asked if the a/c’s had been put in yet and if I needed any help!

I see a lot of bad stuff in the world. Sometimes I’m treated quite badly because of my health conditions. But sometimes I see how good and generous people truly are. I’m thankful that I get a glimpse of that from time to time. I sure don’t take it for granted!

I turned on that lovely a/c today and basked in the cool, clear air. It felt amazing. And I bet I’ll sleep well tonight.

Leave a Comment » | Expectations, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

You put orange juice in this?!?

May 13, 2013

I appreciate when people try to accommodate my food restrictions. They go out of their way to make sure I can eat their food, and it means a lot.

Unfortunately, some people don’t take it as seriously as they need to.

Here’s the thing: some allergies kill, some don’t. But all allergens need to be avoided.

So sure, eating beets or peanuts won’t kill me. But I’ll be pretty damn miserable for a week or more. I could have increased pain and increased fatigue, and I’ll definitely have all sorts of horrible digestive problems. So even though I’ll survive, that’s still some pretty rotten stuff that I’d rather avoid.

I’ve done pretty well in restaurants. I don’t go out to eat often and when I do, I make sure the waiter really understands my needs. So far, so good. Unfortunately, eating the food that friends and relatives prepare hasn’t gone as well. In fact, I’ve gotten sick several times. There have also been a few near misses.

A good example of a near miss was this weekend. We were having a lovely family meal. B had gone to great effort to prepare everything. He told me all of the ingredients, to be sure I could eat it. It all sounded fine except for one sauce, which he kept separate. I was thrilled. Later, as he was getting it all ready, I asked him again about the ingredients. Again, it sounded fine. Then while we were eating, someone else asked how he made it so they could copy it themselves. He ran through the preparation, and then mentioned what made it so great – the orange juice used at the end. Wait a minute, he didn’t tell me about any orange juice! I froze with food on a fork halfway to my mouth. I must have said something, because everyone looked at me. I’d already eaten several bites. Oh crap. He shook it off with, “It’s only orange juice.” I was horrified! As it turns out, it was a freshly squeezed orange, so I was ok. Store-bought orange juice would have been a problem. But he didn’t know that. He just assumed it was fine for some crazy reason. Or maybe he’d forgotten it earlier and he was trying to cover his tracks. Either way, I was really insulted. Here I thought he cared enough to work around my food allergies, and he’d left out an entire ingredient that didn’t seem important to him. This is the second time he’s done this. Once could have been a fluke, but twice is the start of a pattern that I don’t want to continue. I know he’ll be insulted when I don’t eat his food anymore, but my health is more important then his feelings.

I think that’s the important thing that so many people don’t seem to understand. My health is more important than their feelings. So if they suddenly realize they’ve forgotten to tell me about an ingredient, I’d rather they just say it than to wait and hope it’s ok. That’s happened with others who’ve cooked food that I’ve eaten. And it’s not ok. And if I say I can’t eat it, that’s not a comment on your cooking ability. It’s that I’d rather not spend the night doubled over in pain because I chose to eat something with a peanut sauce in order to keep you happy. Why is this so hard to understand?

Some of these incidents have turned out badly. I’m just thankful this last one was ok. I’m in the middle (or hopefully beyond the middle) of a bad downturn, and it’s kicking my ass. I’m pretty sure that eating the wrong foods right now would be a very, very bad move. Which is why for a while at least, I won’t be eating anyone else’s cooking.

2 Comments | Decisions, Educating, Expectations, Frustration, Gastrointestinal, Kindness, Rants, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

I simply forget to complain

May 5, 2013

The other night was a really really bad night. It was one of those nights. You know the ones. They feel endless. Time stops. Nothing helps, yet you know that somehow it will get better.

For me, it was a triple whammy. First, I was dealing with nausea and diarrhea. As I have mentioned in many posts before, I finally found a diet that seems to have healed my leaky gut and I almost never have these symptoms anymore. It’s been truly life-changing! So I don’t know where these came from. Second, I was having trouble breathing. This had been a problem all day, but when I tried to lie down to go to sleep, it got worse. Maybe this had to do with the new med? Finally, I wasn’t at home, I was at my parents’ house. This meant I couldn’t just pop in my go-to feeling-like-crap movie to distract me. It was a very very bad time.

After 2 hours of laying down, then sitting up to help my breathing, then laying down, then moving to the couch to try to sleep while sitting up, then going back to bed, all while sucking on Pepto tablets, I did finally manage to get some sleep. I slept fitfully, though, waking up often, and around 7am I finally gave up altogether.

The next day, I acted like it was a normal day, even though I felt like shit. I didn’t mention anything until late in the afternoon when my father asked how I was. He had been awake when I was roaming the house, trying to get comfortable on the couch. I hadn’t said a word to him that night, so he knew something was wrong. Plus, I don’t usually sit alone in a dark room for over an hour. I gave him a basic summary.  I didn’t think much of it, until I noticed my brother-in-law was paying attention to what I said. And then I wondered how it sounded to him, since I’ve never really spoken to him about any of my symptoms, and I hadn’t mentioned anything that day. No one else knew I had been ill the night before. I wasn’t trying to hide it, I just didn’t think to mention it. What was the point? It was over, and I was on the mend.

That night I was on Facebook, reading posts in the many thyroid-related and pain-related groups that I belong to, and I noticed multiple people commenting on the friends who get tired of listening to them talk about their illnesses. It made me wonder, not for the first time, what it is that people say.

Now, it’s not that I don’t speak about my illnesses or my symptoms at all. Of course I do. I suppose there are a few differences for me compared to what I read. I just have no idea what the reality actually is for others. For me, though:

  1. I don’t talk about it every day.
  2. Mostly I only speak about it when it effects plans with a friend, etc. I’ll say I have to cancel plans because I don’t feel well, or that I need to change things to be more sedentary because the fatigue is bad. But I rarely bring it up out of context.
  3. Except for the worst times, I intentionally try to balance things. When I hear myself talking about my health stuff a lot to someone, I make a point of then asking about their lives, and focusing on what’s going on with them. (I learned this lesson the hard way from a friend many years ago. But I did learn from it, which is why she’s still in my life and is reading this on Monday morning at work while she sips her coffee, I bet. *waves*)
  4. My symptoms came on gradually over many years. It’s not as if I had a particular life and then I woke up one day and everything had changed. Instead, the illnesses slowly eroded my life, so the changes were less startling, and therefore weren’t “news” the way they are when there’s a sudden onset of symptoms.

Do I complain? Of course. Do I whine? Occasionally. But mostly, I forget to bring it up. This crap is such a huge part of my life, that it almost feels normal. It’s sad but true. So I forget to talk about it most of the time. And that’s why I can’t imagine what it is that others say about it every day. I’m just curious. What is it you discuss with your friends and family regarding your illness(es)?

And for the times when I really just need to bitch about the unfairness of it all, well, this blog is great for that!

6 Comments | Expectations, Frustration, Isolation, Kindness, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

A cathartic cry and Mom

March 20, 2013

It’s not like I haven’t thought about writing in the last two weeks. I’ve actually wanted to write here more than that one post. But I just couldn’t.

Last month I wrote about the latest disability insurance bullshit. After that delay, I got a bit depressed. I wasn’t thrilled about the depression, but I also wasn’t worried. I’ve experienced it before. It wasn’t too bad, and I knew it would go away once the insurance stuff got settled.

Cathartic Cry

Then last week I found out about a new delay. Now it looks like I should have an answer in April. Maybe. I had just gotten the notice from my landlord saying that I had to either renew my lease or give them notice. I had just gone to the bank to change my accounts, because I can no longer meet the minimum. All sorts of other things depend on this insurance decision. And it was delayed. Again. Still. More.

I was really depressed after that. I cancelled plans that I had been looking forward to for a long time, and I sat home alone in my apartment. I had no desire to go outside. I didn’t want to do anything. I dreaded seeing my friend the next day. She didn’t know the whole story. I didn’t want to explain it. I couldn’t explain it. But I also couldn’t have a happy, cheerful, pleasant visit.

Then I thought more about the way the insurance assholes are treating me like shit. They’re acting like I’m not a real person. They’re taking away from my focus on my health (ironically!) My health has suffered because of the stress of this. I was just starting to make real progress, and this bullshit has led to a backslide.

And I suddenly knew I needed to cry. I had to get it all out. I called the one person I really wanted to talk to: Mom.

I got her on her cell phone. She was on her way to a nice dinner party, so I tried to tell her we could talk later, but she heard it in my voice. She insisted we talk. What a mom! I sobbed on the phone to her for a long time. Yes, these were full-out sobs. I told her my frustrations, my anger, my fears. She listened and somehow she said all the right things. She supported me.

After that call I felt much better. It was the first time I’d cried about this insurance crap, and I really needed it. I was exhausted, but I felt lighter. I spent the night relaxing, and I chose a light-hearted, fun movie to watch before crashing early. The cry had really worn me out. The next day, I cancelled the long-awaited plans with my friend, and instead spent the day with my mom. The sun was out for a change, and we took a long (well, long for me) walk in a park I’d never been to. Fresh air, sunshine, trees, a pond, and dogs really cheered me up. Best of all, my mom is my best friend, and it was great to talk to her. Back at her place, we talked a lot. I helped her clean out her desk, which made her thrilled and made me feel useful and productive for a change. We had dinner with my dad, and then the three of us sat around talking about all sorts of things that had nothing to do with my health or with insurance. Like “normal” people. It was relaxing and lovely. I left their house feeling like I could handle things again.

I won’t say that my depression is gone, but it’s a hell of a lot better than it was a few days ago. Sometimes all it takes is a good, cathartic cry. And mom.

3 Comments | Expectations, Frustration, Isolation, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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