The little things really DO make a BIG difference

June 29, 2013

It’s amazing how a small thing change make a huge difference. I was just getting mentally ready to go to a friend’s house. Pills in purse? Yes. Food? Need to bring some. Clothing? Better make sure it’s all loose today. Cooling towel? Cool enough to work for the car ride. The routine is familiar, but annoying.

And then I got a text from my friend: “What room temperature is best for you?”

WOW! We hadn’t discussed that. I knew he had a/c, and I’d mentioned that I’d need him to turn it on, but that was it. But he remembered how sensitive I am to heat. He knows that often I don’t meet up with him for lunch because I can’t stand the humidity. I know he and his wife don’t love the heat, but unlike me they can certainly deal with it. And he thought to ask what temperature I want his a/c set to. He’s going to change the temperature of their apartment for me.

Now that’s a thoughtful friend!

2 Comments | Expectations, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

A true friend understands

June 17, 2013

As I’ve said many times before, my sister and I don’t get along. Yesterday was another good example of why I don’t like to be around her.

My mother made a big dinner for Father’s Day. After dinner, I was sitting in the kitchen talking to my mom while she put food away. My sister was washing dishes, and suddenly asked me to help dry. Now, while we’d been sitting around earlier, I had made several long trips to the bathroom. I was pale. My mother commented later about how bad I looked. My eyes were puffy and half closed. While the rest of the family had talked animatedly in the living room before dinner, I had been laying there half asleep, barely saying a word. So it was pretty obvious I wasn’t feeling well. And yet she was asking me to dry dishes. I didn’t want to start a fight, so I just stood up and dried a couple of dishes. I did it slowly, careful not to drop anything, careful not to fall when I turned to put each one down. And after a few, so there just a little space in the dish rack, we all went into the dining room for dessert. I figured it was good enough. It was more than I should have done.

After dessert I didn’t even bother going to the kitchen. My dad and I sat at the table chatting – I figured he shouldn’t be abandoned while my brother-in-law was taking their dog outside for a potty break. My mother and sister were cleaning up in the kitchen. I heard my mother thank my sister for her help as my sister walked into the dining room, where I sat with my dad. My sister responded, “Well I couldn’t let you do it all by yourself.” Then she turned and looked right at me. I would have given her the finger, but again, I didn’t want to start a fight in front of my parents.

Now let’s compare that to the day before. A friend was visiting from out of town. I wanted to see her and her three kids, but I didn’t feel up to going to her parents’ house where she was staying, 1/2 hour away from me. So she agreed to make the drive up to my neighborhood. There’s a great playground within walking distance of my place but I didn’t feel up to walking, so she drove to pick me up. She understood that I couldn’t help much with the kids, and didn’t mind that I sat on a bench in the shade while she chased them. She was just happy for our time together. She even gave me a birthday gift. I pointed out that I didn’t expect anything – after all, I hadn’t given her anything this year. I can’t afford it thanks to the insurance bullshit. She said that even though I couldn’t afford to give gifts, it was still my birthday and she wanted to give me something. And you know what she gave me? A big gift bag full of gluten-free goodies! She gave me several kinds of pasta, flour, cake mix, pancake mix, pretzels, and cookies – all gluten-free! She knows how hard it is for me to find some of these things, and she gave me exactly what she knew I’d want and enjoy. And as she gave it to me, she offered to exchange anything I couldn’t eat, since she wasn’t sure exactly what my other food restrictions were. Talk about someone who understands!

Sure, my sister can be a bitch. Sure, she didn’t wish me a happy birthday. But I’m choosing instead to focus on the excellent people in my life who are wonderful, understanding, and supportive. Most of us have lost people due to our illnesses, but some of us have been lucky enough to find true friends will always be there for us.

As a side note, I want to remind myself and you that we contribute to these friendships too. Maybe I can’t babysit for my friends or cook for them when they’re ill. They offer to get me groceries and pick up prescriptions. But I lend an ear and am very supportive. I have helped them prepare for job interviews, research insurance for a kid’s illness, and just listened to them complain about jobs and families. Our illnesses don’t prevent us from being good friends. Some people don’t get that, so it’s up to us to focus on the ones who do.

6 Comments | Expectations, Isolation, Kindness, Raves, Relationships: Family & Friends & Dating & Sex, Support, Thoughtfulness | Permalink
Posted by chronicrants

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 deserve a good sex partner

May 19, 2013

Too often, people with chronic illnesses feel like we’re lucky to have whatever we get in life. We’re lucky to have a job, no matter how good or bad. We’re lucky to have a spouse, no matter how good or bad. We’re lucky to have friends, no matter how good or bad. But we deserve more than that. We deserve the best! And that’s true for sex partners, too.

I haven’t seen my sex buddy, D, in two very long weeks. There I was, feeling horny today, when I started to question whether I’m physically up to seeing him at all this week. After all, this recent downturn has been really bad, and every bit of activity makes it worse. I’ve written before about how sex can make me feel better, but is it worth trying? Then I remembered just how awesome D is, and I thought about how lucky I am. That made me realize that while I’m definitely lucky to have him in my life, and I shouldn’t take him for granted, I also should never settle for anything less. And neither should you.

Somehow, D has never been phased by my health stuff. I mean, I once crapped on him during sex and he just brushed it off and suggested we clean up together in the shower. Pretty awesome, right? Here are some other ways he’s completely wonderful about my health issues:

  • When I feel especially bad, he does all the work, and never complains.
  • When I’m in pain, he’s extra gentle.
  • He’s careful about avoiding touching areas that he knows are extra sensitive, like my wrists and feet.
  • He’s significantly larger than me and is always careful not to let his extra weight put too much pressure on any part of me that could hurt.
  • We both like sex just a little rough, and when he pins me down, he’s careful to avoid areas that he knows are a problem. He’ll pin my forearms instead of my wrists, for example.
  • When I wince, he always sees it and immediately asks how he can adjust things.
  • When something is clearly difficult for me, he doesn’t push it. For example, last month he was lying on top of me and tried to pull my head/neck up to kiss him. Clearly my body was having none of it, so he just changed positions so I could stay flat on the bed.
  • He respects my illness-related fears. Even if something doesn’t hurt, I might be scared that it will, so he avoids it.
  • He pays attention to good hurt vs. bad hurt and respects both. Good hurt was when he was sucking on my breast and I responded with “Ow! That feels good!” and he kept going. Bad hurt was when I yelped and winced and yelled, “Ow!” and he immediately stopped and asked what was wrong and what he could do differently.
  • When I need to switch positions at an inopportune time, he doesn’t say a word about it.

See what I mean? He’s awesome. Of course, it’s not all him. I have to do my part too.

I have to listen to my body and respect what it wants. I was young when the pain started, so I’ve never had sex without pain. That also means I’ve had a long time to learn how to adjust things. I may not be able to practice all of the techniques or positions I’ve read about, but I have found quite a few popular ones that I can do without pain. I am careful to pace myself. For example, I know that when I give a hand job, I can only go for so long with each hand before the pain gets too bad, so I’m careful to switch before I reach that point, and I always time the switch to be the least disruptive to him. I also position my body to have the right leverage for my arm without straining my neck. I pay attention to what works for him, and I find ways to improve on it that he enjoys and that don’t hurt me. And when pain does sneak in, I make an effort to not let it disrupt things. Like a few weeks ago, when I was just starting to orgasm, and it felt so good, and my body tensed up, and my toes curled, and… OH MY GOD! THAT HURTS!  But I didn’t lose it. I relaxed my feet and uncurled my toes and felt the pain go away just enough, and I kept my head where it needed to be – in the orgasm. I could have let that spear of pain interrupt things, but I didn’t. Obviously that doesn’t work when the pain is at its worst, but so many times I’ve been able to ignore it or use it. And it’s always worth it! Of course, the most important thing I do for myself is communicating. I think that communication is always important during sex, but it’s extra important if you’re dealing with pain and other chronic issues. Tell your partner what’s likely to cause problems in advance, and stop him/her if there are problems in the middle. They won’t mind. And if they do, they don’t deserve you.

So you need to do your part too. You need to make sure you’re doing the best you can for your body. Communicate and respect your own needs. And make sure it’s not all about you – do nice things for your partner, too. Most of all, don’t put up with anyone who isn’t kind, respectful, and understanding. You deserve all of those things, and don’t let anyone tell you otherwise. We’re sick. We have health problems. Fine. But we are still fine human beings to deserve to be treated as well as everyone else.

4 Comments | Educating, Expectations, Limitations, Pain, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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