Tag Archives: awareness

Foggy Frog Book Launch

Foggy Frog and the Pain Gang book launch in Pictures

26 Sep 16
Megan
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2 comments

On Saturday, 24 September 2016, we held a book launch party to celebrate the completion of the long awaited Foggy Frog and the Pain Gang picture book. I say “long awaited: because the book has been almost 3 years in the making and I first got support from the community through a Kickstarter campaign in March 2014.

The Foggy Frog and the Pain Gang picture book has been developed as a way of introducing people to the symptoms of invisible illnesses. There is a strong focus on the different types of pain that people may live with, but it also looks at symptoms such as brain fog and fatigue. As well as the main picture book part, the back of the book contains more in-depth information to help promote further discussion.

We had around 60 people attend the launch, including a few local politicians and key medical staff in the chronic pain field. It was a great opportunity to also raise awareness of the fact that these conditions are often being overlooked from a funding perspective, as well as from a general quality of life perspective.

I still have a bit of work to do to get the paperback version of the book available online, but you can get the Kindle version on Amazon now. You can contact me via the contact us page if you’d like the printed version (I have some of the Kickstarter print run still available for sale).

There is also a giveaway currently running through Goodreads (10 copies available) if you’re interested in trying to win a copy of the book.

Goodreads Book Giveaway

Foggy Frog and the Pain Gang by Megan Schartner

Foggy Frog and the Pain Gang

by Megan Schartner

Giveaway ends October 30, 2016.

See the giveaway details
at Goodreads.

Enter Giveaway

 

I really wanted to do the book launch this week, as it coincides nicely with Invisible Illness Awareness Week. However, due to the fact that none of the print-on-demand printers seem to allow A4 Landscape books, I had to redesign the book to be square for online sales. This should be available soon and I will let you know when it is!

I want to give a big thank you to everyone who helped make the launch a success. In particular, thank you to:

  • Erik for videography and money handling.
  • Akil, from Akil Madan Photography, for the images.
  • Vouch, from Black Sheep Cooking School, and Sophie for catering.
  • The Hon. Kelly Vincent for speaking.
  • My Step-father, Wayne for making the Ukelele as a door prize
  • Erik’s Amma, Erika, and my Step-father’s mum, Clarice, for helping to ice the cake.

Without further ado, here’s the book launch in pictures (we did record the speeches and I’ll share the videos another time)…

Foggy Frog and the Pain Gang Book Launch

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Living with Chronic Pain

Living with Chronic Pain – Top 3 Tips

21 Jul 15
Megan
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2 comments

As I mentioned last week, it’s National Pain Week in Australia this week. I will be sharing my story over at the National Pain Week website and at My Invisible Life later in the week. I’ll also be talking to local media, starting with ABC Riverland Today at 10:45 this morning.

Living with chronic pain can be frustrating, overwhelming and disempowering, however it is still possible to live a meaningful life while coping with it.

With over 2 years experience of living with chronic pain myself, and having spoken to many people who have lived with it a lot longer than I have, I’ve found many tips and tricks that have helped me live a reasonably quality and meaningful life despite constant pain and fatigue. Below I share my top 3 tips for living with chronic pain:

  1. Listen to your body and pace yourself
  2. Don’t stop researching and trying new things
  3. Eliminate the unnecessary so you can focus on what is meaningful to you

Listen to your body and pace yourself

One of the first things I learnt on my journey with chronic illness is that my limits had changed. Before chronic illness I was a high achiever who had to always be doing something active and challenging. Since becoming ill, I still need to be doing something but I’ve had to cut back on the level of activity.

On a day to day basis I need to consider how I am feeling and plan my day accordingly. If my body has higher pain or fatigue levels than normal, or my brain is complete fog, then I know I need to step back and rest most of the day. If my pain levels are lower than normal or I’m feeling energetic (doesn’t happen that often but it could!) I need to remember not to push too hard or I will crash later on.

 

In general it’s best to aim for consistency and to allow your body to rest when it needs to.

To give you an example, I’m just coming out of a 2-week crash so my step count and activity level has been cut way back to an amount that i can maintain even if I’m feeling really bad. I have to minimise work and social activities and focus on resting. On any given day I usually only have one or two key activities lined up, which could be as simple as make a meal. While I was in the crash I didn’t really do any activities and most days were spent on the couch.

Don’t stop researching and trying new things

For many of the causes of chronic pain there is no known reason or cure for the pain. As a result there is usually always someone claiming to have the solution. Although it’s important to consider each solution offered to you carefully it is good to keep an open mind and try many different things.

What works for one person may not work for another.

I’ve tried multiple prescription drugs, none of which helped. In fact, most of them caused side effects worse than the symptoms they were meant to be helping. For other people though these drugs have helped.

I’ve tried (or I’m trying) physiotherapy, various exercise programs with guidance from an exercise physiotherapist, acupuncture, breathing techniques, a tens machine, and hypnosis.

Using the TENS Machine for Pelvic Pain

Using the TENS Machine for Pelvic Pain

Eliminate the unnecessary so you can focus on what is meaningful to you

Because of my limitations I have gone through phases where I’ve felt that my life had no meaning. To help me get over that I’ve had to focus in on what is meaningful to me.

I’ve worked on identifying my values and changing my lifestyle so what little energy I have is used doing things that fit with these values.

Since living with chronic pain I have taken up blogging so I can still contribute to the wider community, I’m focused on shopping and living as sustainably as possible, I meditate daily and practice gratitude, and I make time each week to spend at least an hour with family and friends.

I have eliminated my gym membership (I can’t exercise to that extent at the moment any way), full time employment (again beyond my limitations), and cleaning the house (we get a cleaner in fortnightly to do the major cleaning, and I’m slowly decluttering so there’s less to pick up and care for around the house).

Bonus Tip: Have Fun

I personally believe the most important tip I’ve been given on my journey towards a simple, sustainable and meaningful lifestyle while living with chronic pain, is to focus on what makes you happy and to have fun.

Tasks such as cleaning can be outsourced and when you have limited energy to contribute to society you are more likely to be happy with your life if (as in the tip above) you focus on what is meaningful to you and make sure you do at least one thing to have fun each day.

Whether it’s taking the time to look out the window and connect with nature, reading a good book or spending time with family and friends, it’s important to make time for fun in your life.

What tips would you give someone who was living with chronic pain and struggling?

National Pain Week Australia 2015 and a LiveKen Update

15 Jul 15
Megan
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It’s been a while since we’ve done a post here at LiveKen and there’s a reason for that! We’ve been busy running our first online workshop, Back to Basics: A life with Meaning.

We’re into week 4 of the 6-week workshop now and I have to say I’m very happy with how it’s going. I’m actually working through all the activities along side the participants and have found it extremely helpful so far. Over the next few weeks we’ll be using the insight we’ve gained into what is meaningful for us to create our own plans for moving forward to a more simple, sustainable and meaningful life. I promise to provide more of an update in the near future, however the next few weeks are looking very busy for me, especially next week.

National Pain Week Australia

20 – 26 July 2015

It’s National Pain Week here in Australia and there is going to be a lot of media coverage around living with chronic pain.

I’ve volunteered to be a storyteller for the week and will be sharing my story via the National Pain Week Website and in the local media. I already have a radio interview lined up for Monday and there looks like there may be more coverage opportunities during the week. Keep an eye on our Facebook page and Twitter for updates of exactly when and where you can here from me during National Pain Week 2015.

In other news, those of you who followed me before at My Chronic Life Journey would have noticed it’s been a very long time since I’ve posted or made any changes there. Unfortunately, I’ve had some technical difficulties over the last few months and currently find myself locked out of the site. I’m trying to rectify this at the moment because I know that I have quite a few loyal followers there who haven’t yet moved over to this site.

 

#May12BlogBomb

#May12BlogBomb A Vision for the Future: Living with ME and Fibromyalgia

12 May 15
Megan
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Today is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and Multiple Chemical Sensitivities (MCS) Awareness Day.

#May12BlogBomb

Last year, to help raise awareness, I wrote a letter to my illness over on My Chronic Life Journey as part of a blogging campaign begun by Sally Burch over at Just ME (#May12BlogBomb).

This year I’m participating again. The theme for 2015 is ‘A Vision for the Future’.

Like Sally, I feel that May 12 Awareness Day is about helping others who don’t live with these conditions to better understand what life is like for those of us who do. (Not that awareness raising should only occur on one day of the year.)

What I’m hoping to get across today is that, although we may have many challenges in our day to day life that ‘healthy’ people don’t need to consider, we still have the same hopes and dreams for the future.

So, now that I’ve provided some background information let’s get on to my response to the theme…

Visions, hopes and dreams

Although bad health may limit my ability to undertake many activities people consider to be ‘normal’ for someone my age, I haven’t let this steal my hopes and dreams for the future.

Turning 30 this year has led to me thinking more and more about where my life is heading and what I have achieved so far.

I have achieved so much with my life so far that I am proud of, including:

  • Completed my Arts and Science degrees with honours in the science.
  • Worked with individuals, communities and businesses to create a more sustainable future.
  • Raised funds to publish a picture book for raising awareness of invisible illnesses (due to be published later this year)
  • Married the man of my dreams
  • Travelled interstate and overseas for work and holidays (before getting ill)

Although I’ve achieved so much, there is one dream that always seems to be just out of reach for me… Having a child and starting a family.

This is an ongoing issue for me, and something that my husband and I have been discussing quite a lot lately both with each other and with my doctors and specialists.

Although my dream was always that my family would at least be started before I was 30, that is not going to happen. If everything goes well, I may have my first child while I’m 30 but even that seems unlikely.

There are so many additional concerns to consider when thinking about starting a family when you live with a chronic illness.

  • What impact will my conditions have on my ability to conceive and carry a child to term?
  • What impact will pregnancy have on my symptoms? increased pain/fatigue/nausea?
  • How will I cope when the child is born?
  • Will any of the medications I’m on affect my pregnancy/child?

All of these questions are ones I’ve been asking myself, my family, and my doctors and specialists.

We’ve been unable to get a clear answer from any of the doctors or specialists which makes it hard when trying to make an informed decision.

My husband, rightly, has concerns about my health and my ability to cope with pregnancy, birth and child rearing. I’m also concerned about how my body will cope with it all but to me it’s worth it if I’m able to fulfil my lifelong dream of becoming a mother.

The closest we’ve had as a response from the doctors is that the pelvic pain, currently thought to be caused by Pelvic Congestion Syndrome, should not get worse with pregnancy given that I’m having success in reducing it with the pelvic physio’s advice and guidance. In regards to my ME/CFS and Fibromyalgia, none of my doctors or specialists have had enough experience with pregnancy and these conditions to be able to say what may happen.

So, as you can probably tell from all of this, my biggest vision for the future is to be a mother.

My vision does include other things, such as increasing awareness of invisible illnesses and helping others live their own simple, sustainable and meaningful lives, but being a mother is definitely at the top of my list.

What is your vision for the future?

Don’t forget about the opportunity available to you at the moment to join us for our first ever online workshop to help you take the first step towards your own simple, sustainable and meaningful life. Read about it here.