Thursday, December 29, 2016

2016: One Hell of a Year

Well, that;s been quite something, hasn’t it? 

2016 was a year that had opinions about what should happen, made it so, and many of us didn’t like it. For one, it was, in the words of the Toronto Star, “the year the music died.” David Bowie left us in early January and I’m still not over it. I’m also not over the loss of Alan Rickman, Prince, and Leonard Cohen, and the loss of Carrie Fisher is still so raw.

And that’s just the people who make the news when something bad happens to them. It seems as if everyone I knew were facing monumental challenges, as well. There’s been illness, worsening of conditions, intense pain, losses. So much it was about two steps forward and three – or 16 — steps back. We climbed mountains, all of us.

I’ve talked about my mountain quite a bit here on the blog. Nine months ago, I got the flu and almost died, more than once. The Boy says he figures St. Michael’s Hospital saved my life three times over a two week period. That’s a sobering statement.

2016 was a bastard.

But this year gave as much as it took. Children were born all over the world, people fell in love, medical science is helping some live longer, friends saw each other through hardship, we cried together, we laughed together, we lived together.

I survived and not just once. Three times. Somehow miraculously, I survived. And then I lived, for that kind of experience has a way of encouraging you to live just a bit more fully than you were before. For me, that meant looking at the world around me, truly seeing, and realizing just how clear and bright the colours were, how warm the sun, how vibrant the life within animals and people. It doesn’t matter that I am still facing some challenges related to that experience. I’ll figure it out and in the meantime, I will live.

And it meant writing another book. It started as an exercise in getting back my writing mojo and accidentally, astonishingly, turned into an actual book over just a few months. It is a book that I am very proud of, a book that makes my heart happy. I wrote it to help other people with chronic illness and the people who love them, but this little book helped me, too. It helped me find my writing voice again, but also something much more than that. Through writing it, through sharing it with my community, it helped me connect to life in just the way it was meant when I wrote it.

As I’m writing this post, a quote keps popping into my mind. I don’t know much about Shakespeare or how to interpret his work, so who knows if I’m using it correctly. But this is the one:

The quality of mercy is not strain'd,
It droppeth as the gentle rain from heaven
Upon the place beneath. It is twice blest:
It blesseth him that gives and him that takes.
                             The Merchant of Venice, Act 4, Scene 1, 180-187

We forget that life is multidimensional and not just about living. That when given the gift of life, it includes the risk of illness, the risk of death, the risk of hardship. All of that is part of life, not just the living of it. Mercy is multidimensional, too, and not just about getting back your life. Sometimes it’s about peace after a long fight, being held by someone who loves you in the midst of the darkness, or waking up to try again.

2016 tested us and in so doing gave us the opportunity to see the world in its astonishing beauty. It took and it gave.

It was a blessed year.

(nonetheless, let’s hope 2017 leaves us a bit more room to enjoy the beauty of the world)

Happy New Year! 

Wednesday, December 28, 2016

The Year in Review on RAHealthCentral

Year-in-review articles all around in this. Personally, I'm sort of addicted to the things, so it was a pleasure to write a version of this phenomenon for RAHealthCentral: 

"We have come to the end of another year, and I can’t be the only person who feels it went by in six months instead of 12. Here on RAHealthCentral, we have packed a lot of life, a lot of talk, and a lot of information into 2016. It was all under the overarching umbrella of our annual theme Your #ChronicLife with Rheumatoid Arthritis (RA), which is about openly talking about the reality of living with chronic conditions. Please join me as I share memories of some of our most popular posts.

Relationships and sex

We kept it real when we wrote about how your chronic illness can affect relationships and sex. In an interview with Kira Lynne, we discussed dating and relationships. Anna shared tips to nurture your relationship, and Leslie shared her story of what happens when your condition contributes to a breakup.

Sex is an important part of a relationship, but chronic illness can present some unique challenges to physical intimacy. We spoke to Kirsten Schultz, the creator of Chronic Sex, a place for you to feel safe in talking about sex and chronic illness. Along the same theme, I also shared tips on masturbation with chronic pain and how to make pleasing yourself easier."

You can read the rest of the year in review on HealthCentral.

Tuesday, December 27, 2016

3 Self-Care Resolutions for Chronic Illness

There’s nothing like taking some time off to help you get a bit of perspective on your life and the crazy it has become. I’m not done thinking yet, but I have come up with a somewhat quirky list of resolutions for the new year inspired by Chronic Christmas. I’m sure they could benefit me and maybe you, as well.

Singing opens you up in so many ways. Physically, it benefits your breathing. Emotionally, it’s a connection to joy. Mentally, it gets your brain working remembering the words and the melody.

Also, it’s a lot of fun. Even for those of us who can’t sing on key if our lives depended on it. When you live with chronic illness, finding fun can be a bit of a challenge (to put it mildly). Singing is an easy way to incorporate having a good time every day. It doesn’t cost anything and you don’t need to go anywhere to do it. Crank your favourite tune on YouTube or iTunes and belt one out.

For me, singing might have an additional benefit. I’m still working on increasing my breath capacity after the medical adventure and several people have suggested singing as a remedy. It might help me use my voice better, as well. So at some point this year, I’m going to look into singing lessons. I’ll keep you posted.

Stop and think
So much of our everyday stress is related to moving too fast. Something has to be done, so we do it without thinking about the how and why of the task. Well, not until afterwards when we’re whimpering on the couch in a massive flare, that is.

One of the underlying themes of Chronic Christmas was helping (hopefully) those who read it to approach the tasks that cause them stress in a more mindful way. More specifically, to stop and think about whether there is another way to do it, or if it is necessary at all.

Who has time for mindfulness? Well, it could be argued that approaching our lives with a higher degree of mindfulness could help us build better lives.

And boy, is this ever something I need to do. Moving fast is fun for me, but I’m beginning to realize that I’m really not enjoying the consequences of moving fast. And strangely enough, I’m not really talking about the resulting crashes — although, they aren’t that amusing at all. No, I’m talking about all the things I don’t get done because I move too fast to think strategically about where I put my energy and time. This coming year, I’ll continue to chip away at this one. Having spent the last six months immersed in the Chronic Christmas universe where it’s all about approaching tasks with a bit of a critical eye may have taught me something. We’ll see.

Downsizing was another prevalent theme in the book. For instance, instead of making 17 different kinds of cookies, bake one kind and make it is the one that’s quintessentially the holidays for you.

As I was writing this, it occurred to me that it was a really good way of approaching life in general. 

Downsizing is a natural consequence of stopping and thinking, but goes a little further. It’s a deliberate effort to reduce your stress by reducing tasks, commitments, possessions, and so on. It can be as simple as washing the towels every three days instead of every day. Of instituting a firm potluck (or pizza) rule for all entertaining and get-togethers. Or mayve rebuilding your garden with a view towards a low maintenance design and throwing money at the neighbour’s teenager to mow the lawn. And so on.

I’ve already started on downsizing through my Get Organized project in which I hope to reduce the amount of stuff I have to create more space and calm in my home. I’ll post updates as I make progress.

Do you have any suggestions for downsizing and incorporating mindfulness? And what’s your favourite sing-along song?

Thursday, December 22, 2016

Foods To Trigger RA, Foods to Help RA

When you live with a chronic illness, you try a lot of different things to chip away at the symptoms. What foods can help and heard RA has been a topic for probably as long as the disease has been around, but it seems to be even more prevalent at present. In my new slideshow for HealthCentral, I looked into the topic, sharing information about foods that may help or hurt RA:

"At present, researchers have not found evidence to suggest that diet can effectively control rheumatoid arthritis (RA). However, studies have shown that certain types of food may affect levels of inflammation. Knowing which types of foods can help and which can cause you to flare can be helpful in managing your symptoms."

See the rest of the slideshow on rheumatoid arthritis and food.

Tuesday, December 20, 2016

Should My Partner Have Sex with Someone Else Because I Have a Chronic Illness?

When you live with chronic illness and disability, pain and mobility limitations can make sex difficult. But does that mean your partner should find someone else with whom to have sex?

I see this fairly often, mostly late at night on private Facebook groups where it’s safe to bare what’s deep inside. I’ve been there myself, as well, right when The Boy and I first started dating. The conversation went something like this:

Me: I don’t know what I can do. Maybe we should talk about you having an outlet somewhere else.

The Boy: not a chance. We’ll figure it out.

I had thought it only fair, had been very focused on my limitations and worrying about whether I'd be able to participate fully in all aspects of our relationship. When I heard his reply, I was deeply relieved. I am at heart monogamous.

Internalized stigma with general decrepitude
So many of us who live with chronic illness struggle with self-esteem issues, with feeling like we are damaged goods. That message is communicated to us through media, through the stigma of chronic illness and disability, through so many parts of our culture. It’s no wonder that we internalize it.
And then there’s the reality of chronic illness. If we barely have enough energy to make it through the day, sex is often the last thing we want to do. And we are aware that sex is part of the deal (if you will) of a relationship, and might start worrying that if we don’t put out, our partners will get itchy. And that contributes to further erosion of our self-esteem.

It can get to be a bit of a mess. And when it does, we might start wondering whether we should give the okay for them to look elsewhere.

This isn’t just internalized stigma. This is internalized ableism. This is us buying that message that we aren’t good enough and don’t deserve the same dignity and consideration as an able-bodied person.

The cheating line
And then things can get even messier. Because sometimes our partner suggests that they find an outlet elsewhere. Y’know, to make it easier for us. So we don’t feel bad about not being able to put out. So let’s have an open relationship.

And this is where I start getting somewhat ranty. Because this is utter bullshit. This is about that person wanting to cheat with permission.

Here’s the thing. A relationship that is other than monogamous — e.g. open, polyamorous, and so on — relies on both partners being okay with it, giving permission and endorsement and by the way it being mutual. And if you’re not okay with this, but feel pressured because you can’t provide nookie at the frequency your partner says they want, then it isn’t an open relationship. It’s cheating with permission.

And if, just for fun, you suggested that you might start taking a look elsewhere for someone who can meet your needs in a way that includes adaptation and your partner has issues with this, you’ll know s/he is a flaming hypocrite. And that you have bigger problems in the relationship.

Love and the horizontal tango
Sex isn’t everything in a relationship. Dry spells happen. Sometimes it’s after you’ve had a baby, other times it’s related to stress at work, because of caring for elderly parents, conflicting schedules, fatigue, or perhaps you’re going through a period of not liking each other very much. When you live with chronic illness, dry spells happen when your disease flares, when you have a lot of pain, when you’re getting used to a new medication. And so on.

But intimacy isn’t just about that physical act. Just because you’re not swinging from the chandeliers having passionate and frequent sex doesn’t mean that you can’t do other things. Cuddling, caressing each other, talking dirty, being there while the other person masturbates. Having vigourous debates about ideas, thoughts, or simply just talking about your lives is also intimacy. Watching a movie, reading quietly in the same room, playing a board or video game with your kids (or each other) is also intimacy. All of this nurtures your relationship during the times when one of you has less desire or ability. Because guess what, it’s not just you who might be going through this.

And then there’s the other thing. Which is that sex isn’t just swinging from the chandelier or intercourse. It can be so many other things. The things I mentioned above — cuddling, caressing each other, etc. — stoke the embers and are reminders that you find the other person delightfully sexy. And then there are all sorts of interesting ways of having sex if you want to give it a try. The only thing it requires is that both of you are flexible and willing to try new things, such as toys, mutual masturbation, watching porn, and the list goes on. And for some, that new thing might be an open relationship, polyamory, or any other variation.  But only do it if you feel is right for you and your relationship.