Posts tagged ‘chronic illness’

September 8, 2017

#535 – Your Input, Please

I’m working on an article for HealthCentral about Breaking Rules with Chronic Illness. My topic will explore how your rules for living change when you have a chronic illness, or have they?

Lene Andersen explains:

As a society, we have a norm, an average, and this determines how we react to each other. For instance, if you are having a meeting with your boss, showing up in ripped jeans and a cropped shirt is not likely to enhance your promotion chances. Adults are expected to work, couples are expected to marry and live in the same home, and we are all expected to say please and thank you. Not following those rules can bring censure by others and possibly societal stigmatization.

When you have a chronic illness, you find out that there are a whole lot of unspoken rules regarding health that you didn’t know about. Which makes sense — when you’re a healthy, able-bodied person, you’re not navigating those implicit commands of the chronic illness world we live in. Throughout September, we will be exploring what it’s like to be a rule breaker, the consequences we face, and how to cope.

I’d love to hear your comments about the rules you have now that you have a chronic illness, versus those pre-diagnosis:

  • Do you have rules?
  • Do other people have rules or expectations of you?
  • How have either of them changed since your diagnosis?
  • What happens if you break a rule? How do you feel?
  • How has this impacted you, your loved ones, your colleagues, etc.?

Please feel free to email me to add your input.

Please share this post if you know someone who might like to comment. Thank you in advance for passing it along.

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December 2, 2016

#510 – Book Giveaway: Chronic Christmas

chronicchristmasChronic 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.

Here is an example from December 4th in the chapter entitled Take a Walk:

Find out which kind of limitations your friend, neighbor, or family member has because of their chronic illness and adapt your walking to that. This could mean walking a shorter distance and/ or doing it slowly. You may also need to adjust the time of day that you walk. You may also need to adjust the time of day that you walk. For instance, if your friend is sensitive to heat, bright sunlight, or humidity, walking in the evening after the sun goes down is less likely to make their chronic illness flare (an increase in symptoms). Have a conversation about what you both would like to do and the aspects of your lives that affect how and when you walk.

If the buddy-system means you’ll start moving, walking, swimming, dancing and more, then I’m all for it. At the very least, you want to maintain your strength, flexibility and endurance when you have a chronic illness. It’s a bonus when you improve it.

Here is a suggestion from Lene that is music to the ears of someone who is going through a tough time, whether it be a chronic or acute illness, or a death of a loved one:

Your offer of help can do wonders. Not that elusive some day in the future that never really happens kind of help, but now. This month. Don’t say, ‘Can I help?’ Instead say, ‘I’m setting aside a day to help you before Christmas. When would you like me to come over, and what would you like me to do?’

People in those situations are often overwhelmed. They may feel like it’s too much to ask for all the help they need, so they quietly struggle to do the things that need doing. A definitive offer of help can be like a breath of refreshing winter air.

Bear in mind that it’s empowering to ask for help when you need it. Lene addresses this topic on December 20th. How? You’ll just have to read this book to find out!

Chronic Christmas is the little book that:

  • Gives you practical tips you can put to immediate use.
  • Can help you get through the holidays with a smile on your face.
  • Help you deepen your relationships.
  • Is for sharing and caring.

Enter the giveaway for a copy of Chronic Christmas:

  1. One person will receive a copy of Chronic Christmas: Surviving the Holidays with a Chronic Illness by Lene Andersen.
  2. Contest closes at midnight PT, on Thursday, December 8th, 2016.
  3. To enter the giveaway, leave a comment. (Mandatory.)
  4. Earn another entry by subscribing to my mostly monthly newsletter. (Let me know in the comments section if you’re already a subscriber and you’ll receive two entries.)
  5. For extra entries to the giveaway, get social:
    On Twitter? Share the following: #Giveaway from @AuntieStress for the new book #ChronicChristmas by @TheSeatedView http://wp.me/p1OifR-2rV
    On Google+? Be sure to +MariannaPaulson when you share the link, and you’ll earn another entry.
  6. Make your way over to my Pinterest Board called “Giveaways”. Earn one entry by clicking “Comment” on the Chronic Christmas pin, then leave one. Earn another entry by repinning this giveaway announcement.
  7. If you decide to share on one of your other social media sites, be sure to paste in the link in the comment section, below.
  8. Good Luck!

Buy the book here.

March 18, 2013

#431 – How Does It Feel? – Part 2

> Dentist

Image courtesy of Marcelo Terraza.

It’s often true that you can’t fully know what something is like unless you have lived it yourself. Sure, you can empathize, you can imagine, but you don’t, won’t and can’t really know unless you’ve walked the day in someone else’s shoes and on someone else’s misshapen feet. And you can’t really do that, nor would I want you to do that.

So, how do you explain what it is like to live with a chronic disease such as rheumatoid arthritis? By using an analogy.

The one I’ve come up with is the acute pain of a toothache. It nags at you, grabs your attention and distracts you until you make your way to the dentist for that relief . . . until you get the bill, but that’s another type of pain, altogether! 🙂

Anyway, imagine that toothache, going on and on, day after day, grinding away at you, distracting you from what you hold dear.

That is what rheumatoid arthritis is like when the disease is active and uncontrolled. Unlike going to the dentist, where you get immediate relief, often the fire of a flare-up can take time—months in some cases—to extinguish.

Deepening the Understanding

There’s a post on RA Cellist’s blog that provides a link to a clip where a rheumatologist dons a simulation suit called a “Physical Function” suit. He wanted to better understand what his patients go through when their movements are impacted by a chronic and debilitating condition such as rheumatoid arthritis. The suit mimics the restricted mobility of RA, but as the interviewer pointed out, “No simulation can fully replicate the pain that people with rheumatoid arthritis suffer”.

Wouldn’t it be wonderful if more people had access to the Physical Function suit. People who work directly with those of us with rheumatological conditions – doctors, physiotherapists, occupational therapists, nurses, massage therapists, etc. I can just imagine how different our world would look if policy makers, designers and engineers were able to spend some time working in one of those suits. Products might be more user-friendly and policies more inclusive, and reflective of our needs.

I’d like to acknowledge that things have come a long way since I was first diagnosed, thirty-five years ago. However, I think that journey has not yet been completed.

Related post: How Does It Feel? – Part 1.

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