Tuesday, August 26, 2014

4 Stress Busters for Writers with a Chronic Illness

There are distinct benefits to working for yourself and even more benefits to having an office in your home. The commute is ideal, the dress code very relaxed, and you can set your own hours. This is fantastic when you have a chronic illness. There are also drawbacks. Recently, I’ve been forced to reevaluate how I work and manage stress (or rather, don’t manage stress) and I may have gotten a bit of perspective.

First, I wrote down the factors that contribute to my stress levels being unreasonable:

Multiple projects and roles. When you have 8 part-time jobs/roles/hats, some for pay, some not, it adds to a lot of balls to juggle.
No space for writing and thinking. The hats require so much energy and time that there isn’t room for things I want to do. Such as write my next book. Or having quiet time to think (also required for writing).

Multitasking. Lots of competing deadlines and massive influx of email. This doesn’t actually get more done. Instead, I flit from task to task and hat to hat, desperately trying to keep up. It keeps me from focusing and lend a looming sense of having missed something somewhere to every day.

Social media. This is part of my work, but managing multiple accounts over several platforms feels a lot like disorganized flitting. 

Not enough hours in the day. Because of my Mandatory Rest Period, I work in two shifts: during the day and a bit after dinner. That’s the plan, anyway. Often, the after dinner shift drags on and I’m still at the computer way too late. Often, I end the day exhausted and in a lot of pain.

I looked at that for a while. Then I started figuring out ways to deal with it.

Inbox Folders, Rules and Notifications
I wear a lot of hats. That means a lot of email which create an avalanche, under which individual emails are buried and often remain unaddressed. I’ve now created folders related to each individual hat I wear, as well as a Level 1 and a Level 2 folder, into which I will sort incoming emails not related to a particular hat based on urgency. Next I set up rules to funnel emails from individuals with whom I work under each hat directly into the appropriate folder. 

This helps my primary inbox to remain uncluttered (mostly). It will make it easier to focus on what I need to do for one particular job/task/hat, while emails related to other roles are elsewhere and not distracting me. Instead of flitting from task to task, I can now concentrated on one area at a time. 
And one more thing will help cut down on distraction. It’s one thing to get the ping to notify me of incoming email, it’s quite another to see a link to it hovering over the article I’m writing. I simply don’t have the restraint to ignore it. So I turned off desktop notification.

Do 6 Things
About a year ago, I talked about ways to give 80% at work, leaving 20% for things like writing a book or say, having a personal life. I also wrote about Mary Kay’s Six Things approach as a way to get there. Mary Kay built her empire by doing six things every day. She'd start out the morning with a list of six things and worked her way through them. If one didn’t get done, it would become Thing #1 the following day. I don’t know what she’d do if she finished her list at 3 o’clock, but in my variation of her approach, that means I can goof off for the rest of the day. Or write.

I did use this approach for quite a while and it had a wonderfully relaxing impact. I got a lot more done than I thought would be possible, had time for myself, the people I care about, and writing. And best of all, significantly less stress. Somewhere along the line, I started adding one or two more things to the list and lost control. It’s time to incorporate the Six Things approach into my life again and this time, be vigilant about not adding more to the list.

Automate Whenever Possible
This one deals especially with the social media black hole. Leigh Mitchell’s presentation at the Living ARTHfully event included information about how to automate social media to make using it more effective. I’ve already started using Hootsuite and aside from the new toy joy, these really are amazing tools.

Set Boundaries. Stick to Them.
This relates back to the 80% I talked about above. Sending email at 10 PM on a regular basis is just not healthy. So, I’m going to be setting boundaries that will create work-free zones in every day:

Take a one hour lunch break. As long as the weather is nice, leave the house! Head to the lake whenever possible. Come winter, read a book, write a chatty email to someone I like, or call a friend.

No working after 9 PM. That includes email, writing, and phone calls in which work of any kind is discussed. Time off isn’t just about not doing work, it’s also about not thinking or talking about work.

Have no-meeting days. Designate one day to be free of meetings and appointments.

Say no. Remember that other people’s priorities don’t have to become mine. Repeat this mantra to myself daily.

Call in sick. Working for yourself means no sick days and working in your home means you can work no matter how you feel. This is nuts.

Respect myself, my priorities, and my work. They come first. All of the above are great tips, but they only work if I let them. Making sure I follow my rules is an indication that I respect myself and the reasons I created them. I have a feeling this may be the most important.

And lastly, one more rule. Which is that the rules can be set aside when it’s important. The trick is to make sure that that happens only in situations that warrant it — crises, massive deadline, etc. However, if I do follow my guidelines, there should be enough energy to rise to such occasions.

Do you have a good tip to add to the list?

Friday, August 22, 2014

A Farewell to Joe

Dear Joe,

Yesterday, I walked away from you for the final time.

The signs have been there for a while, but I closed my eyes to them. I didn’t want to believe that you were leaving me. But today, after over six months of coming to you and having to walk away dismissed, I finally saw it.

You don’t want me anymore.

Joe, you’ve been my favorite clothing store for years. The style of your clothes is fresh, timeless, I love the bright colors, and your prices are pretty fantastic, as well. Since you opened a store near me, I have bought an embarrassing amount of clothes from you.

In the last year or so, there have been some changes. The wonderful wool V-neck sweaters that I bought two years ago are still going strong, but the ones I bought this past winter lasted only a few months before they pilled so horrendously that I had to throw them out. Still, when you only pay $19 for a sweater, you can’t expect the best quality. I understood that in order to keep prices low, you had to cut back on the quality of the materials you use. Although I miss the days where your prices were both reasonable and your clothes could last for several years if I took good care of them, I let it go.

Last winter, I also noticed that the accessibility of your store was deteriorating. I use a power wheelchair and until last winter, have been able to get to most areas in your store. Now that’s no longer the case. I find this odd, especially considering the Accessibility for Ontarians with Disabilities Act and its customer service regulations. You’d think that the ability to get around in your store was a basic part of customer service, but I could be wrong. Although the shrinking spaces between displays has been quite annoying, there is generally one of your wonderful staff around to help me. Again, I let it go.

But then there was the shrinking of your clothes. I’ve noticed this for a while, but quite frankly, I thought I was gaining weight. I am a bit pudgy or, as I prefer to call it, well-rounded. Still, I haven’t gained any weight in the last year or so, so I didn’t understand why all of a sudden I couldn’t get into your T-shirts, even a size large. I wondered if it were because the style was more of a body hugging cut, which can be difficult to for me to get over my head, as my shoulders have limited mobility. Then I cleaned out my closet and found a T-shirt I bought that your store a few years back. For one, I noticed that the quality was very good compared to what you use now. Then I noticed that this T-shirt (a size large) was loose on me. And that’s when I realized that you have been shrinking your sizes. What used to be a large is now an extra-large or more and gradually, it’s become more difficult for me to find something that fits in your store.

And then this Spring happened. I was looking forward to it and not just because of the never-ending winter we had last year. I needed new pants and you always have a wonderful variety. I roamed the store and couldn’t find anything but white jeans and jeggings (it is perhaps a sign of my age that I don’t understand jeggings). Oh, wait! Look at that! A display of beautiful linen pants in different colors. I wanted two pairs. Except the biggest size was a 12 and I need a 16 (I am a 14, but a size up is more comfortable when you sit all day). How strange. This has never happened before. Usually, all your pants come in sizes 0-16.

Over the summer, I have entered your store every few weeks and walked away empty-handed every time. When speaking to your staff, they’ve told me that the larger sizes are few and far between. The reason I can never find anything is that the ones that do come into the store sell so quickly that the only ones left are the tiny sizes.

Yesterday, I went into your store on a lark. It was full of denim. A veritable sea of denim. They’d just put out a line, containing approximately 15 different styles of jeans. I saw several that weren’t super skinny jeans and… 

Excuse me for sidetracking, but I must make this point — Joe, please. Enough with the skinny jeans. It only looks good on about 10% of the population.

Anyway! I looked at some of the jeans and found sizes 0, 2 and 4, but not much above that. I asked one of your staff if he was up for the challenge of finding me a pair of jeans in a 16. It took him a while, but he finally found one pair. Unfortunately, they were skinny jeans and that just doesn’t work for me. I inquired hopefully about the boyfriend jean and he told me that only goes to a size 12 now.

Joe, you disappoint me. One of the great things about you is that you have always been inclusive in your clothes. You didn’t just cater to what I call the anorexic giraffe — those two gangly years around age 17 — but also to women in their 30s, 40s, 50s and above, many of whom have more curves. This year, you seem to have made a policy change and are now trying to become one of those ridiculous stores where sizes are two below the true size and no one over the age of 25 or above a size 10 are welcome.

Why abandon what made you successful? Why eliminate a solid part of your audience, the ones who often have more of a disposable income to spend on clothes?

I am a lot healthier than I used to be, so I walked away, rather than keep coming back to a place that makes me feel unwelcome. I found another couple of stores that include my size and makes sure the aisles are bit bigger so a wheelchair can pass. Their clothes cost more than yours, but I’m willing to pay that to feel welcome.

It’s been grand, Joe, but my business is going elsewhere. I wonder how many other women are doing the same?


Monday, August 18, 2014

#LivingARTHfully: Connection and Inspiration

I spent Friday of last week at the Art Gallery of Ontario for the Living ARTHfully Blogger and Online Influencer Event. Canadian bloggers who write about RA, ankylosing spondylitis and psoriasis arthritis came together to make connections, learn tips and information, and brainstorm about increasing online conversations about arthritis. Hosted by GCI Group for Janssen (makers of Remicade and Simponi), it was an inspiring and invigorating day. By the time I went home, I was several new friends richer and buzzing with new ideas. 

Let me introduce you to the other bloggers:

Brian lives in Newfoundland and blogs at Newfoundland Sea Kayaking about arthritis and kayaking among icebergs. For such a calm guy, he’s a bit crazy. You can find him on Twitter at @Newhook79.

Dustin’s from Calgary. Only a few years into his journey with ankylosing spondylitis, he’s already really an important contributor to the online community. You can find him at Journey with AS and @journeyWithAS.

The lovely Julia writes a blog The Old Lady in My Bones from Vancouver and is also a writer, poet and actor. And she cracks me up. Connect with her on twitter at @jgchayco.

Lindsay lives in Winnipeg and has blogged since she was 19 at Run Lindsay Run. That level of accomplishment and poise would be intimidating if she wasn’t such a nice person. You can find her on Twitter at @Lindsaydot.

Marianna and I have known each other online for several years. She’s the author of A Rheumful of Tips and Auntie Stress, as well as a recent addition to the HealthCentral RA writers’ team. Meeting in person was such a treat. Her Twitter handle is @auntiestress.

There were wonderful presentations related to the work we do. One by Dr. Andy Thompson from RheumInfo.com on his exciting experience with growing a website. Dr. Sanjay Dixit gave an engrossing overview of RA, AS and PsA, treatments and the incredible impact of Biologics. Leigh Mitchell from Women in Biz Network got me thinking of new ways to communicate (alas no photo, as she was sitting right next to me).

That was a pretty full morning, so we were all very hungry when we headed for the AGO Frank restaurant. And that’s definitely blogworthy, as well. I’d like to thank the culinary team at Frank for accepting the challenge of creating safe meals for my crapload of food allergies. It was the best meal I’ve had in a very long time!

After lunch, we had a brainstorming session led by Karen from Janssen and Amanda from GCI.

The closing activity had us creating hands made of clay led by the intrepid Carol. Mine was the result of a collaborative effort between myself and my attendant. Let’s just say neither of us will ever be a sculptor.

So, what did I learn? I’m still processing and suspect it’ll take a while for everything to coalesce, but I want to share some of the information and ideas. In no particular order:

Smoking and RA. Quitting smoking is extremely important when you have RA. There is a direct link between smoking and developing RA, as well as between smoking and severity of RA and lessened impact of treatment. However, it seems to be related specifically to the chemicals ingested when you smoke, rather than the nicotine itself. Dr. Dixit explained that you can keep administering nicotine through gum, sprays or patches, as long as you don’t smoke.

Getting better results from your appointments. A bunch of good ideas were generated. If you have a lot of questions and there isn’t time in your appointment with your rheumatologist to get them all answered, Dr. Dixit suggested booking a separate appointment just to talk. To make sure both you and your doctor are on the same page, the brilliant Lindsay had the idea of bringing a list of questions in two copies, one for you and one for your doctor. This will help them understand your priorities. As well, it’s really important that you do not downplay your symptoms. Be honest about how your disease impacts your life so your doctor has a better idea of how your treatment is working.

A new approach to better care. Myself and many others in the community have called for a better team approach to treating RA, including one-stop shopping and a referral to a social worker for resources and counseling at the time of diagnosis. Brian told us of a new program in Newfoundland in which people with inflammatory arthritis are assessed and placed on a waiting list according to need. This means you can potentially get to a rheumatologist much faster. Not only that, but you then spend five days seeing a number of different medical professionals who educate you about your condition. Hopefully, this will spread to the rest of the country.

Access to medication. Did you know that there is a small window early in RA that optimizes your chances for remission? If you are treated early and aggressively, 50% of people with RA go into remission within a year. Mindblowingly, this is the only condition that has this astonishing response to treatment. Heart disease? No. Anything else? No. Biologics are the treatment of choice to increase the chance of remission, but cost makes it impossible for doctors to prescribe it as the first medication.

A trip into the future. Janssen shared some new educational material, including a fold-out card with information that included a video demonstrating e.g., how to do an injection. A video. In a card. Seriously. It blew my mind.

Other topics included communicating with doctors, setting boundaries around your privacy, what medication support programs can do to make your experience easier, and many others.

I’d like to thank GCI and Janssen for this opportunity and the wonderful staff of both companies for making it such a great day. Thanks so much to Karen, Amanda, Anya, Sukait, Kate, and the other lovely people whose names I’ve forgotten. It’s was wonderful to connect with other Canadian bloggers. Let’s do it again next year!