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Loving Someone with Chronic Illness

Having a partner or family member who is dealing with any type of chronic illness is difficult. Sometimes you wish you could make them better, so they wouldn’t have to struggle anymore. Sometimes you resent that they need so much care and time—and it’s okay to feel that way, by the way, as long as you aren’t taking it out on them or others.

When you have a loved one who deals with one of the so-called “invisible illnesses,” it can be even more difficult. How can they say they don’t have strength to help clean the house? They look perfectly fine, and they didn’t have any trouble going to the kitchen for a glass of water. How can they say being at a family gathering on a holiday is triggering? My family’s perfectly nice, nothing at all like the one that abused them. How can they spend the entire day in bed and not do anything? There’s so much that has to get done!

People with those illnesses, which include mental illnesses, chronic pain conditions like fibromyalgia, migraines, and others, don’t “look sick.” And because of the nature of those illnesses, sometimes people who have them don’t *feel* sick either. Personally, I have a few “invisible illnesses.” Some days I get up, shower, get dressed, and I’m off to tackle the day, getting more done before bed than my husband says he would be able to do in a week. I walk fairly easily, and I appear, and sometimes even feel, happy.

But other days, the “demons” attack. I feel like the world’s going to end, and I can’t stop crying. I’m in so much pain and having so much trouble with coordination that walking from the bedroom to the bathroom—which is right beside the bedroom—is almost more than I can manage. I can’t leave the house. I force myself to at least be in the living room instead of the bedroom, but that takes so much out of me that I end up dozing on the couch most of the day.

My husband is wonderful on those days. He knows I’m not “faking it” or “lazy” when I ask him to go to the store because I can’t manage leaving the house, or when I ask him to finish mopping the kitchen because I’m too exhausted after only doing a third of it. But it took a while to get on the same page about him helping me with tasks. If I said, “I can’t handle going to the store, but we need things,” he sometimes said, “Then I guess you have to go to the store.” I had to learn to actually ask him to go instead of hinting.

It also took him a while to understand that if I say “I’m in so much pain right now, I hate this,” I’m not asking him to fix it. There isn’t anything he can do about the pain. I’m asking for comfort and for reassurance that I’m not burdening him by asking him to take over doing some of my usual tasks, and now that he realizes that, he’s great about giving me a hug, or walking me to the bedroom and bringing me a glass of water while I settle down to read or sleep.

It isn’t easy having an “invisible illness” (or more than one). It definitely isn’t easy being a loved one of someone who has “invisible illnesses,” something I also know from personal experience since I’m not the only one in my family who has them. But if you work together to figure out what the person with the illnesses needs, and how to meet those needs without sacrificing others’ needs, and if you recognize that at the base, the person with the illnesses most needs love and compassion, it can be managed.

Giving an Apology

Over the weekend, my kids (ages 17 and 20, so not exactly kids anymore if you want to be technical) had a conflict that left both of them feeling hurt and angry. This post is essentially what I told the 20-year-old as they were trying to get over the situation.

Apologizing to someone doesn’t always mean you’ve done something wrong. It doesn’t mean you *think* you’ve done something wrong, or that you agree with their perspective.

Sometimes an apology is best translated as “I know I did something that hurt you (or made you angry, or upset you, or whatever), and I regret making you feel that way.”

In the particular conflict in my household, the 20-year-old had said they would do something with the 17-year-old.  The 20-year-old woke up feeling ill and with a fairly high fever, so wasn’t up to doing what they’d said they would do. The 17-year-old was angry and disappointed about this, with the result that she didn’t speak to the 20-year-old much of the rest of the day. The 20-year-old was having a hard time with it, so I asked if they’d apologized to their sister.

“No,” they said. “Why should I apologize? I can’t help being sick.”

That was when I explained my thoughts on apologizing. They wouldn’t be telling their sister they were sorry for being sick. They wouldn’t be agreeing with their sister’s reaction. They would just be acknowledging that they recognize how their sister feels and regret causing her to feel that way. I told them, “Don’t even make an excuse or try to explain. Just say ‘I’m sorry I couldn’t go with you’ and leave her alone.”

They didn’t seem to like the idea, because to them, apology means “I was wrong and you were right.” But they gave it a try anyway. As I told them, when there’s a conflict, someone has to be the first to say they’re sorry, or nothing gets resolved. Fortunately, this got resolved.

The Holiday Season

For those who observe certain holidays, we’re heading into that season. The US Thanksgiving holiday is toward the end of this month, and Christmas, Hannukah, and Kwanzaa, among others, occur in December.

Some of us grew up celebrating one or more of these holidays, and for some, it wasn’t always a pleasant experience. Family conflicts often become worse and/or more frequent around this time of year, partly because of the stress of large gatherings and large expenses, and, in the northern hemisphere, partly because daylight hours are shorter and the darkness can affect moods.

In some places, people are expected to be all about family and celebrations at this time of year, but for some of us, that isn’t always possible or beneficial. Personally, I deal each year with Seasonal Affective Disorder, a depression caused by the lack of daylight, along with my usual mental health issues. In addition, when I was a child and teen, as well as during my first marriage, the holidays were a very stressful time of year in my home. It’s difficult for me to feel joyful about the holidays, though for the past several years my kids have helped by taking over the decorating and sharing their excitement.

If you have a tough time with holidays, be gentle with yourself. Try to minimize your responsibilities as far as shopping and hosting. Lean on friends and family, or if possible and necessary seek professional help. Everyone needs a boost sometimes, and this time of year can definitely require a boost.

Random Thoughts

Because I was having a hard time thinking of topics for this week’s blog, I decided to just be random about it. I guess these are more questions than thoughts, so feel free to answer if you’re so inclined.

Why do some people think hugs can be given to total strangers with no hesitation, while others think hugs are foreplay?

Do cats have some kind of radar that tells them where you are at any given moment? Because mine always lurk near me, even when I try to hide…

Same thing with kids. How do kids always know where you are?

How many dishes have to get broken before I stop my 20-year-old from washing them?

How does my 20-year-old not know how to wash dishes yet?

How the heck is she 20??? That makes me… old!

Why is it that sometimes friendship seems more intimate than a relationship?

Why does it have to Monday?

About My Cats

I had a hard time figuring out a topic for this week’s post, so I decided to talk about my cats.

I have three cats. Technically none of them are mine. Two belong to my 16-year-old and one to my 19-year-old. At least that’s the way we see it as humans.

Cats see it differently. The oldest cat agrees that she belongs to my 16-year-old. The middle cat, however, considers my husband to be her human, rather than the 19-year-old. And the youngest can’t make up her mind, though she tends to gravitate to me most of the time.

Right now I’m trying to figure out how to get the youngest cat into the carrier for a trip to the vet. This might not be as easy as it seems. She’s a small cat but she fights mightily, and she really doesn’t like the carrier… But she’s going to have to deal with it, because if we don’t get her spayed soon, she’s going to drive all of us bananas.

She won’t be as difficult as the other two, though, each of which has to go to the vet within the next few days. I might need to wear armor to load the middle cat into the carrier…

I’m glad to have the cats around, because since I work from home, there are hours on end where they’re the only living beings I have to interact with. And bonus points that they’re soft and fuzzy. (The pic below is the youngest cat in March 2014. Apparently I have no other cat pics…)MoonySm

Someone to Believe

When you grow up being constantly told you can’t do things, it’s really hard to believe in yourself. Because of that, just making an attempt to learn something new, or to build a skill, can be scary. What if all the people who told you that you would fail were right?

When I was growing up, no matter what I said I wanted to do, I was told I would never manage it. I wasn’t good enough, or talented enough, or dedicated enough, or whatever. People made fun of me for my dreams, as bullies will.

I’m not saying any of that to whine, by the way. Just setting the stage.

When I was a kid, there were three things I wanted to do. I wanted to teach. I wanted to be a published author. And I wanted to write songs and perform them in front of audiences.

Despite everyone who told me I couldn’t do those things, I’ve done two. I used to teach; I had to stop due to health issues. And obviously I’m a published author, since this is my author website…

But I had people who believed in me when I did those things.

When I was in elementary school, the special education teacher asked my classroom teacher if I could tutor a couple of her students during the school day. She told me over and over what a great job I did, especially when I managed to help one of her students understand long division, something they’d been working on for months. And when I was in high school, my guidance counselor arranged for me to give up a study hall to volunteer in the special education classroom at the adjacent elementary school. There, again, I was able to help students make progress, and was told by the teacher and her aides that I should go on to become a teacher myself.

In kindergarten, since I already knew how to read, the teacher wasn’t quite sure what to do with me. One day, I showed her a story I’d written. From that point on, writing stories became part of my reading program. She had me read books from the classroom library and write my own stories based on them. In high school, my tenth grade English teacher enjoyed my stories so much that when she required us to keep journals, she allowed me to keep a journal for one of my characters instead of myself. And when I met my husband, I let him read a couple of erotica stories I’d written, and he told me I should keep writing, and that I shouldn’t hold myself back out of fear if I really wanted to be published.

Now I’m working on the singer-songwriter thing. And I don’t seem to have anyone who believes in me. At least not out of the people who’ve heard or read my songs, or heard me sing. (Except the vocal coach who told me I have a beautiful voice and can definitely make it onstage. But I can’t afford to have her keep telling me that at $50 a lesson…)

A friend told me I need to fight for myself on this. That I should ignore the “haters” if I believe I can do this. But that really isn’t easy when one of the “haters” is my guy who’s helping me with the music. And it isn’t easy when I was brought up to believe I would fail no matter what, and fighting for myself was… not a smart thing to do.

I’m still trying. I just wish someone in my “real” life believed in me.

Spending Time

If you’ve followed this blog and read my bio, you know I’m married. My husband is a good man. He supports the family while I stay home and write. He’s my rock when my anxiety or depression take over, and he’s great with my kids.

But for him, being married just kind of means… being married. We don’t really spend any time together. We have no shared activities or hobbies. Other than reading and sex, we don’t have much of anything in common, and we don’t even read the same types of books. This doesn’t bother him at all. He’s perfectly content just knowing I exist in his life.

For me, that’s a problem. I love him, and I like the times that we interact, but sometimes I wish we actually did things together. Date nights. Or dancing (which we did briefly when we were first together, but I was seriously ill at the time and couldn’t keep up with the lessons). Or anything that would involve the two of us actually spending time with each other doing the same thing, and sharing something with each other.

When I’ve expressed that to others, I’ve been told I’m ungrateful. That I should be thankful he’s willing to support my kids and me, and I shouldn’t care that the most time we spend together is in bed.

I am grateful for what he does for us, but to me, a relationship is about more than physical affection and just coexisting in the same space. I think in any relationship, there should definitely be space for each person to be an individual, but there should also be times to be a couple.

At least, that’s my opinion. I’m interested in hearing yours.

Random Thoughts

I haven’t done a “random list of thoughts” post for a while, but I couldn’t think of anything else this week…

There’s way too much snow outside. But it rained yesterday, which wasn’t good.

My cat doesn’t understand that when she stands on my lap, it hurts…

Fortunately, the cat does understand that when she stands on my keyboard, I get annoyed.

I’ll be really, really glad when it’s spring.

Sometimes my brain just plain doesn’t want to cooperate. With ANYTHING.

My kids are very intelligent. And they apparently have a “mom’s working” radar that leads them to wait until I’m actually doing something important to interrupt me with random things.

My cats do the same thing.

Next week, I’ll have something more coherent…

A Thank You Letter

There are a lot of people in my life, both personal and writing, to whom I’m thankful.

There are three who I particularly want to thank, and I want to do so publicly because they deserve to have other people know how awesome they are.

So… Steve, Mike, and Paul, thank you.

What's In A Word?

Thank you for being my biggest cheerleaders in my writing career.

Thank you for assuring me that *you* know one day I’m going to be a big name, even if I don’t believe it.

Thank you for all the times I’ve cried on your shoulders because I’m discouraged, and you’ve just listened and told me it will be okay.

Thank you for reading some of my books and telling me they’re really good; Steve and Paul, given how much you guys read, that definitely means a lot.

Thank you for adding “yet” every time I say I’m not earning as much as I wish I were.

Thank you for constantly reminding me that I’m reaching people, and that’s why I started writing in the first place.

Thank you for just being in my life. I’m not great with words that aren’t in stories, but please just know how much you mean to me.

Thank you.

 

Love Is Love…

My opinion of love doesn’t always match other people’s. I’m talking about romantic love here; obviously there are other types, such as familial love, the love you might feel for a really good friend, love for a pet, and so on.

But I’m talking about romantic love, or being “in love”. Having a relationship with someone.

In the news almost every day, we hear that someone’s ranting against two people of the same sex being in love or allowed to marry. Why? What difference does it make to anyone what someone else does in their personal life? Witness the recent backlash against Michael Sam for–GASP!–kissing his boyfriend on TV when informed he’d been drafted into the NFL! How dare he! They’re two men! What do I tell my children!

BULL…okay. I won’t swear, even though this topic really pisses me off. Because why the hell should it matter if Michael Sam kissed his boyfriend? If he’d jammed his tongue down a *woman’s* throat on TV, no one would have batted an eye or wondered what to tell their children, but because he kissed a man, it’s all of a sudden some horrible huge deal that will traumatize the next generation?

Ugh.

I know people who are in polyamorous relationships or open relationships, where they have relationships (or at least sex) with more than one person or with someone other than their primary partner. Hell, I”M ONE OF THOSE PEOPLE! And, oh my gosh, I must be cheating on my husband! My children must be protected! I’m an evil whore!

Why is it anyone else’s business? (And for the record, my children are teens and no one aside from hubby and me is allowed in our home. Because I know someone out there is wondering.)

Love between or among consenting adults is love. Period. End of story. And it shouldn’t be anyone’s business or concern, other than the people directly involved, what sex or gender people are or how many people are involved in the relationship.

Because yeah. Love is love.