Friday, December 09, 2016
Chronic Christmas has been a little North America-focused. Until now, that is. Thank you so much to Arthritic Chick for my first Australian review!
"Lene Andersen describes her new book ‘Chronic Christmas : Surviving the Holidays with a Chronic Illness’ as “an Advent calendar full of self-care tips to help people with chronic illness savour the holiday season as never before” and that’s exactly what it is. I love it when my expectations are met, and exceeded!
As you might expect, the book takes the format of an Advent Calendar, with each day offering up a tip or some advice for the Christmas Season. What makes the book special is that it offers ideas for not only the person who is managing their chronic illness, but also the people around them. Their family and friends are given specific ideas on how to make the Christmas season less stressful for the chronically ill.
That alone makes the book worth its weight in gold. As someone who struggles to ask for help, now I’m just going to read out each ‘day’ to my sulking teenagers and let them know exactly what they should be doing!"
Read the rest of the Chronic Christmas review from Arthritic Chick.
Thursday, December 08, 2016
Rheumatologist: “how are you feeling? ICU PTSD can happen after such an experience.”
Me: “I’m fine.”
This conversation occurred two weeks after I’d been discharged from the hospital after my medical adventure. And the very next day, I burst into tears as my GP brandished a pneumonia vaccine and I burst into tears, terrified that it would give me pneumonia.
I am not usually a burster.
Still, PTSD sounded like an awfully big word for what I was feeling. I shied away from doing any actual research, instead relying on my vast experience as a moviegoer. I could certainly understand why soldiers would experience PTSD, but I’d just been in the hospital. Right?
Eight months later it’s very clear that something’s gone a little wonky.
The physical and the terror
My voice still gets strained very easily. Not only do I often sound like a frog, but there are other frequent symptoms. Pain when I talk, a lump in my throat, and I develop a cough at the drop of a hat.
And it’s been freaking me out. Except that term sounds a little mild to describe my reaction. Intense anxiety. Panic attacks. Terror.
The signs behind my hospital bed
I think it has a lot to do with not remembering. My last memory before waking up with a tracheostomy in the ICU was feeling like I was coming down with something while visiting the museum. I have no memory of getting the flu, then pneumonia, going to emerg, being admitted into isolation, moving to the ICU, and during that time having more and more trouble breathing until the event that led to being intubated and put on a ventilator. I have no memory of being extubated and my vocal cords swelling. I just heard repeatedly from the hospital staff who’d been present how scary it was, and about the CPR, and the flatline.
Don’t get me wrong, I don’t want to remember any of it. It sounds perfectly awful and having this blank space in my memory is a distinct blessing. But it is also contributing to the anxiety. Because if these things could happen once, who’s to say they won’t happen again? And when my throat hurts when I talk, when I feel like there’s a lump in my throat — and know it’s one of the symptoms of issues with your vocal cords — and my voice gets strained also at the drop of a hat, how close am I to that edge?
And did you know it is next to impossible to find any information on the Internet about the aftermath of being ventilated/having a tracheostomy?
Last week I was going to my dentist for the crown prep on one of the teeth that was broken during the CPR. The night before, I dreamt I had trouble breathing and was about to be intubated. In a concentration camp.
“You were triggered,” my friend Laurie said when I told her about it. Triggered??
A couple of months ago I finally admitted to myself needing help in learning to de-escalate my anxiety when it hits (which is often). My doctor got me on the waitlist for a program in cognitive behavioural therapy and recommended an app called PTSD Coach, published by the Canadian military. I checked it out, answered the 17-question assessment. And:
Obviously, the app is not a mental health professional, but it did surprise me. And then I started thinking that still having this much anxiety half a year after the discharge from the hospital indicated that I while I slowly move up at the waitlist for the counselling, something else was needed. So I booked a follow-up appointment with the ENT clinic.
The wonderful feeling of normal
I saw a really nice doctor who really listened. And who, after I rattled off all my symptoms and resulting anxiety, said these wonderful words: “of course you feel like that. This is normal to us, but completely new to you.”
And in that one short sentence, he normalized my experience. Then he did it one better by pointing out that there’d been a lot of forceful rooting around in my throat and it was no wonder that my vocal cords were still offended.
And I could feel every part of me relax, including my throat.
He also scoped my vocal cords very thoroughly. They looked fine and as long as my RA meds are working, he didn’t think there was any need to worry about them swelling out of the blue. Then he diagnosed me with MTD.
I have muscle tension dysphonia or voice strain due to muscle tension, in my case likely related to anxiety. I got a referral for physiotherapy for my vocal cords with a speech pathologist. Who also happens to be a psychotherapist. It’ll cost money, but it’ll be worth it.
I’m on the waitlist for that, too, but it’s okay. I’ve been much less anxious about my weird throat symptoms since. Which is an improvement. And hopefully within the next couple months, I’ll get the help I need to cope when I’m triggered.
This is for that person who is freaked out about all the aftereffects of having been on a ventilator or had a tracheostomy and can’t find any information about it. Please know that your symptoms are likely normal and it can take quite a while for everything to settle down again. If your ENT doctor did not schedule a follow-up, make the call yourself so you can get some answers. And if you’re dealing with anxiety, talk to your doctor about counselling.
You had a very scary experience. Facing that, processing that is important. Because you need to be able to get on with this life of yours, rather than being stuck in the nightmare of almost losing it.
And so do I.
Are you going shopping this weekend? Does someone you know need a hint before they go shopping? My new slideshow on HealthCentral shares gift ideas for people with chronic illness - share it as blatantly or subtly as you like!
"Gifts and chronic illness
Read all 11 gift ideas!
Wednesday, December 07, 2016
Once an advocate, always an advocate... Creating awareness for and about chronic illness is a year-round job. In my new guest post for WEGO Health, I share tips for how you can include some subtle advocacy for your condition during the holiday season:
"Advocating for chronic illness is a year-round job, one we do with passion and dedication. But advocacy can get more challenging during the holidays. It’s a busy and sometimes emotional time of year and there’s only so much energy to go around.
My new book Chronic Christmas: Surviving the Holidays with a Chronic Illness is an Advent calendar of tips to help you savor the season. When writing it, I wanted to not just deal with things you can do yourself to enjoy the holidays, but something more, as well.
So much of living well with chronic illness has to do with the reactions and support we get from others. That’s why I included a section in each chapter for friends and family who want to help, but may not be quite sure how to do that."
Read the rest of my guest post about advocating during the holidays for WEGO Health.
This summer, I went to The Self-Care Mvmt Summit in Toronto. It was an inspiring event where, among other things, I got to listen to Margaret Trudeau talk about her journey with bipolar disorder. It was my first exposure to Self-Care Catalysts, a company that has a unique approach to helping people with health conditions practice self-care and self-management. In my new post for HealthCentral, I interviewed several fascinating women, including Kirsten Schultz of Chronic Sex, to learn more about the organization, their apps, and their approach to helping people in the community:
"“There is greatness in the ordinary. People who live with illness have many small victories every day and there is greatness in that.” These wise words were said by Grace Soyao, the founder and CEO of Self-Care Catalysts, the organization behind SelfCareMVMT.
Self-Care Catalysts is an organization committed to enabling people living with health conditions to engage in self-care and self-management. They do this through their app, the Health Storylines tool, which has been developed in different versions for a variety of conditions.
They also organized the Self-Care Movement Summit this summer in Toronto and I was privileged to attend.
The Self-Care Movement Summit
Photo credit: Lene Andersen
Margaret Trudeau, mother of Canadian Prime Minister Justin Trudeau, gave the keynote speech at the Summit. She spoke about her own journey with bipolar disorder, which began when her then-husband Pierre Elliott Trudeau was the prime minister of Canada and she was the mother of small children. Her speech was infused with humor and heart."
Read the rest of my article about The Self-Care Mvmt.
Tuesday, December 06, 2016
I used to contribute posts to CreakyJoints and was very happy to be part of the community. Alas, when my workload increased, something had to give. I've missed that community, which is why I was thrilled when they asked me to write a guest post about the holidays and chronic illness (and perhaps mention Chronic Christmas)
Each guest post I write has a different approach to enjoying the holidays. This one shares tips about how to manage multiple holiday social events:
"The holiday season is full of joy. Singing along with the carols playing everywhere, giggling to yourself as you wrap the perfect present for that special someone, and eating all the cookies that somehow broke in the transition from oven to cookie tin.
But let’s face it — the season is also very stressful. And when you live with chronic illness, reducing stress can be an important aspect of managing the symptoms and pain associated with your condition. So how do you balance celebrating the holidays and being kind to yourself?"
Read the rest of my CreakyJoints Chronic Christmas guest post.
Living with a chronic illness adds a significant pile of stress to your life as you deal with pain and other “interesting” symptoms, the unpredictability of the condition, and endless doctor’s appointments. On top of that, there’s coping with people who don’t understand, and adjusting emotionally to the reality of chronic illness.
Hygge can help.
Hygge (pronounced hue-gah) is a unique part of Danish culture. There’s no exact translation in English, but coziness and togetherness get part of the way there. And it was shortlisted by Oxford Dictionaries for word of the year!
Hygge often involves food with people you like. Taking a bit of extra care with the meal is fairly common, but not necessary. It can be as simple as some pasta with tomato sauce, a salad and some crusty bread. If you dim the electric lights and put some candles on the table, hygge is almost guaranteed.
Candles are big part of creating an atmosphere of hygge. So is taking your time. For instance, lingering over dinner, rather than rushing through the meal and bolting away the minute you have swallowed the last bite.
Slow down. Pause between bites, look at the people around the table and talk to each other. When you’re finished, nibble away at some bread or leftover vegetables while you have another glass of wine (or milk or water) and continue chatting.
The point is to take your time and connect with the people around you. And it doesn’t just happen when you eat, although food is very important to the Danes. If someone we know has been to an event, the first question is never “did you have a good time?” or” who was there?” It is always, without fail, “what kind of food did you have?”
You can hygge — because it is both a noun and a verb — over playing a game with your kids, taking a walk, even over homework. The key is the positive, loving connection that happens only when you spend some time paying attention to each other.
Hygge and chronic illness
It could be argued that hygge is an expression of mindfulness. In the audio program Mindfulness for Beginners, John Kabat-Zinn defines mindfulness as “"paying attention in a particular way; on purpose, in the present moment and nonjudgmentally.” I get the impression that the nonjudgmentally means that you should be kind of neutral, but although hygge meets all the other requirements, it’s far from neutral. It is loving, supportive, positive, trusting — all those wonderful emotions that make you feel so good.
And that’s a stress-buster right there. That kind of atmosphere makes you breathe deeply from your diaphragm, relax, and sink into the moment. You forget about the stress, and are maybe even able to ignore the pain. When the moment is over, you walk away feeling centered, at peace, and supported.
When you and your loved ones spend time together, you all experience that sense of connection. The feeling that these people have your back, that they accept you for who you are, so you don’t have to pretend. Just being yourself is a big part of hygge and that is one of the most healing things in the world.
Hygge on your own
But what if you live alone or isn’t up for company, is it possible to hygge alone? You bet! When Lucy the Cat is purring on my lap, it is hyggeligt (the adverb version of the word). When I am listening to Christmas music while wrapping presents, there is a lot of hygge in the air. When I take a bit of extra care with my dinner, instead of just slapping something together because it is just me, it sends a message to myself that I am worth the effort. And when I eat that meal with lovely music in the background and perhaps a glass of wine, it is all hygge. And then when I light my Advent candle — or any other candle — it creates julehygge, the very special Christmas version.
So embrace your inner Dane this holiday season and beyond. Let the hygge start!
To help you and your family hygge this season, take a look at The Danish Way of Parenting’s hygge oath.