Saturday, December 03, 2016

Chronic Christmas Giveaway on A Rheumful of Tips


Marianna a.k.a. the genius behind A Rheumful of Tips has kindly written a review of Chronic Christmas: Surviving the Holidays with a Chronic Illness:

"Chronic Christmas: Surviving the Holidays with a Chronic Illness by Lene Andersen is an advent calendar-style book that is brimming with common-sense and humour, and is also infused with personal stories (and family recipes), that make for enchanting reading.

On each day leading up to Christmas, Lene covers a topic that can not only help those who live with chronic illness survive this season of merry-making, but also thrive. She takes each day further by suggesting how family and friends can assist someone with a chronic illness. If you struggle with what to do to help your friend, family member, or neighbour, this section is for you."

As part of the post, Marianna is also hosting a giveaway for a signed paperback copy of Chronic Christmas. Hop on over to A Rheumful of Tips to read the rest of the review and enter the giveaway by Thursday, December 8, 2016.
   

Friday, December 02, 2016

Pink Tree Maze


At the Toronto Christmas Market in the Distillery District, there is a maze made of pink Christmas trees. I'm not sure if it's festive or excessive. Perhaps both?
 

Thursday, December 01, 2016

Thoughts on Advent Calendars, Chronic Illness, and Holiday Stress




And so it begins.

When I was a child, we would start every day in December by lighting an Advent candle. It cast a warm glow over the breakfast table, contrasting with the blackness outside the windows. In Denmark, so much of December is so very dark.

Burning down the space allotted to each day — about a centimetre — lasted about as long as it took me to eat breakfast. I seem to remember that we all slowed down a little, not wanting to leave the table until it was time to blow out the candle for another day. It started the day with hygge, that unique Danish concept of warmth and cozy togetherness. It set the tone for the whole month, giving impatient children something to look forward to every day, while at the same time building anticipation.

And that is why I used the Advent calendar format for Chronic Christmas: Surviving the Holidays with a Chronic Illness.

Living with a chronic illness is incredibly stressful. And the holiday season piles more on top of the already existing intensity. So many of us end up crashing on the actual big day, unable to participate as much as we want because we exhausted ourselves getting there. And it leaves us very little room to enjoy the season or the celebration.

And that was my goal with this book. For us to slow down, to create hygge and anticipation. As I was writing it, I imagined you gathering with the people you love as the month of December wore on, focusing on each other instead of the rush and the consumerism glaring at us from everywhere. And from a larger view, I imagine all of us gathering around a virtual table, diving into the special Christmas atmosphere called julehygge.

One of the ways we can do that is to show each other what we are doing (and not doing) to celebrate the season. Why not share the stories of your holidays on social media using the hashtag #ChronicChristmas? Show me and each other what your holidays look like. Let’s help each other focus on what’s really important to us, instead of all the other stuff.

I plan to do that, but I’m not going to inundate the blog with it. It will be part of what I talk about in this space this month, but not all of it. Because let’s face it, that would be boring. Take a look at the other spaces where I hang out to see what I’m up to. There’ll be #ChronicChristmas posts on my Facebook page, Twitter, and Instagram accounts, And the tradition of the book and this holiday, there might be a couple of surprises.

And sure, I do hope that as many people as possible buy my book, but I’m not obsessive about it. #ChronicChristmas is about doing something together, not whether or not you have read the book. You also don’t have to celebrate Christmas — this is my favourite holiday, but I am decidedly secular about it. If you celebrate Kwanzaa, Hanukkah, Festivus, the solstice, or anything else (or nothing at all), share what you do using #ChronicChristmas.

That first chapter in Chronic Christmas the book suggests that instead of using your energy going to the mall, you shop online. And that brings me to one last thing for today. 

It started on Giving Tuesday and ends tonight. Until midnight, 50% of the proceeds from the sale of any of my books or the products in The Shop will be donated to MSF/Doctors without Borders. Because at its core, the holidays are about being kind to others and especially those in hard situations.
 
  

Wednesday, November 30, 2016

Hästens: The Best Sleep I’ve Ever Had




I have a new bed. I have never slept this well and it has reduced my chronic pain levels significantly. It is a blue checked Hästens bed.

Earlier this year, I wrote about my quest for a new bed. To recap: every bed I found was too high, too hot, too smelly, or contained latex (I’m allergic). Any kind of foam would have to be broken in for months before it was as soft as was needed by my very sensitive body due to fibromyalgia and a lifetime of rheumatoid arthritis.

Visiting Hästens
In the last couple of years, I’ve wandered into the Hästens Toronto store as a tourist. I’d bring along friends who needed to see these unique beds and enjoy the atmosphere of peace and serenity. I got to know Sleep Consultant Nicholas Vardon and we’d have far-reaching conversations about all sorts of topics. He mentioned his own Hästens bed, saying that it healed him whenever he’d go climbing. Sounds nice, but I didn’t believe this was possible. At least not for me.


And then I tried one of the beds. I lay down and instantly my eyes closed in bliss. I stayed there for about 10 minutes, and when I got up, noticed that my shoulders, which had been screaming all morning, no longer were.

Still, the beds are quite expensive (more on that below), so I continued my quest for a comfortable bed at a lower cost. And found nothing that was even close. Every now and again, I’d go back to try the Hästens bed again, just to check that it really was that comfortable.  During all this time, Nicholas never once pressured me to buy, but welcomed me as a friend.


It took about eight months before I made up my mind to buy a Hästens frame bed (the least expensive model). I made my down payment and waited 10 weeks while Swedish artisans hand-made my bed.

Yes, that’s what happens. They make your bed from scratch. In Sweden.


Hästens, quality of sleep, and chronic pain
My bed arrived in August and it has been paradise!

It’s the best sleep I’ve ever had. Every night, I lie down and am welcomed by the bed. It envelops me, adjusts to my body, and I relax. I fall asleep faster because I’m comfortable, have a deeper sleep, and for the last three months, I’ve woken up feeling rested.

This is incredible when you have RA, fibro, and chronic pain. Before this bed, I usually woke up feeling exhausted. Being rested and ready to face the day is a very new experience, one I haven’t quite gotten used to yet.

What about pain? I was a bit achy that after the first night, but that was the last time I had any pain from my bed. I used to take heavy meds every night in order to fall asleep and sometimes had to take a second dose to stay asleep. In the last three months, I’ve taken those meds only twice.

 
Sleeping in this bed has cut my morning stiffness in half. And it has lowered my daily pain levels by at least two notches. Going from a seven or eight on a 10-point pain scale to a five, occasionally a six, has been life-changing.

As a bonus, it smells incredible. There is a light scent of pine in my bedroom, which reminds me of childhood, Denmark, the ocean, and my grandfather’s workshop. And it doesn’t trigger my asthma. In fact, I feel like I’m breathing easier.

Lucy likes it, too. She claimed it immediately. 

The Hästens bed 
Hästens beds are 100% natural, the frame made of pine. There are spring coils, as well as horsehair that has had all allergens removed, wool, and flax, making the beds hypoallergenic. Every other bed I tried contained only man-made materials, most of which gassed off to the point that I wouldn’t be able to be in the same room with them. In addition, the all-natural materials ensures that the beds don’t sleep hot and keeps away moisture, contrary to beds made from foam. This also has the benefit of keeping bugs away.



There are different models, mattresses, mattress toppers, and leg heights, which made it possible to create a bed low enough for me to use. They’re also incredibly durable, expected to last at least 25 years, and, if you take good care of them, up to 50 or more.
 

The cost
Hästens is considered a luxury bed brand and they are expensive. The least expensive model is about $10-12,000 (Canadian).

But think about how much money you spend on other things in your life. Like a car, a wedding… We don’t prioritize the piece of furniture where we spend a third of our lives and upon which so much of our health depends. Few of us can afford handing over thousands of dollars on a whim, but we save up for so many other things. Why not your bed?

I took a look at what I’d saved up for my old age and decided that having quality of life until that time was worth it. I also did a bit of math — assuming that my bed will last 25 years, that’s less than a dollar per night.

And it’s been worth every penny.


Visit Nicholas at the Toronto Hästens store on 380 King Street East in Studio b. You can also follow Toronto Hästens on Facebook and Instagram.

Note: Hästens did not sponsor this post – I am just a very happy customer.
  


Tuesday, November 29, 2016

Chronic Christmas on RheumatoidArthritis.net

 
Reading a review of the book you've written is always a nerve-racking moment. It doesn't matter if you know the reviewer and figure they're not going to cut you to shreds because they are a nice person. It is still a nerve-racking experience. Mariah Leach of From This Point. Forward has written a review of Chronic Christmas for RheumatoidArthritis.net and turned it into a lovely experience. Thank you very much, Mariah!

"The holiday season is a time for joy – but it can also be a very stressful time, particularly if you are living with a chronic illness. Lene Andersen is a writer, health and disability advocate, and photographer who has lived with rheumatoid arthritis since early childhood. In her newest book, Chronic Christmas: Surviving the Holidays with a Chronic Illness, Andersen provides “an Advent calendar of tips for a sane holiday season.”

For each of the 25 days leading up to Christmas, Andersen has a chapter that discusses a source of holiday stress and provides practical tips for enjoying yourself anyways. One of my favorite things about the book is that it is addressed to individuals living with chronic illnesses and their loved ones. Each chapter starts out with a section dedicated to readers living with a chronic illness, followed by a section with suggestions for how loved ones can help too. Personally, I also particularly love how all of her suggestions come with a healthy dose of humor to make them more digestible!"

Read the rest of Mariah's Chronic Christmas review on RheumatoidArthritis.net.
  

4 Ways to Use Respect and Dignity in Caregiving for Chronic Illness




Giving and receiving care is much more than just the physical act of helping and being helped. Both sides of the relationship have to find a new way to interact, and it can be a real challenge. It’s one of the reasons that half of every chapter in my new book Chronic Christmas: Surviving the Holidays with a Chronic Illness shares ideas for how loved ones can help someone with a chronic condition.

When we think about caregiving, it is usually in the context of someone who needs a lot of help. For instance, my attendants provide caregiving, helping me shower, get dressed, prepare food, and so on. But caregiving can be so much more — or less, if you will — than that. Any time you help someone, you are giving them care. It can be as simple as bringing your beloved a drink or snack while you’re up getting one for yourself. More commonly, the word caregiving is used when there is an element of caring for someone who has physical limitations, such as chronic illness.

As two adults engaged in a caregiving relationship, it’s important that you pay attention to the dynamics between you. It is especially important that you who want to help do so in a way that respects the dignity of the person receiving care. But what does that look like?

Who takes the lead
The person receiving care is the one in charge of this relationship. They know their body best and they know what they need. Think of yourself as the physical embodiment of their wishes, temporarily serving as their hands and feet as you do the things that are difficult for them. Ask how they’d like things done and wait for their direction. At the same time, don’t be a robot — participate in the discussion if the person you’re helping wishes it. 


Communication
Directing another person can initially be a bit tricky until the two of you find a balance. Make sure you communicate well. If the person you’re helping seems to be getting stuck, take a break for a cup of tea and a chat about how to move on. Receiving help can be difficult, especially at first. One of the ways you can help may be to gently guide the conversation about why you are there, and wanting to help in a way that uses dignity and respect. Talk about what that means to each of you.


Teamwork
There is a misperception in our culture that caregiving is something you do to a more or less passive recipient. Nothing could be further from the truth. Caregiving is a very active give-and-take that requires a dedication to teamwork. Both of you need to be ready to cooperate, to listen, and to work together in a way that respects the dignity of both of you. Yes,it does go both ways. You are not an indentured servant, so the words please and thank you are appropriate. Likewise, the person receiving help is not a passive lump.


Choices
Often when we help, we have a particular idea about what needs to be done. It’s tempting to swoop in and organize the other person. But that would be a mistake. As mentioned above, the person receiving help is the one in charge. That means they have the dignity of choice, not only in terms of the kind of help they receive, but how they receive it.

Are you doing laundry? Ask how they want the laundry done. Are you making a sweet potato pie and want to give them half? Ask if they’d like sweet potato pie or would they prefer something else. Do they want their home festooned with coloured lights and you think anything but white lights is tacky? Go nuts with the coloured lights and leave your opinions at home.

Do you have experience with giving or receiving help? What was useful in creating an effective and respectful relationship?

It’s Giving Tuesday. Starting today and through December 1, all proceeds from the sale of any of my books or products in The Shop will be donated to MSF/Doctors without Borders. To help them take care of people who live in conditions where there is very little dignity and respect.