Author Archives: Megan

Sustainable Family: Starting out the way I mean to continue

01 Aug 17
Megan
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Our focus here at LiveKen is on living simple, sustainable and meaningful lives. As we begin this next stage in our life, we need to consider how we can continue to live by our values and become a sustainable family.

What is a Sustainable Family?

As we defined our values clearly, we need to define what we mean by a sustainable family before we can become one. A sustainable family may be something different for you than it is for me.

Even within a family, each person’s definition may be different. I am keen to minimise the impact we have on the environment. E is more interested in how we will manage physically and mentally as a family. Obviously, both of these are important aspects of sustainable living. However, sometimes an action that achieves one of these goals may clash with the other. As with any joint decision, it’s important to find balance. Compromises can allow everyone to be happy.

Having said that, here is my definition of a sustainable family:

A sustainable family is one that minimises their negative impact on the environment, while building strong community ties and maintaining their mental, physical and financial health.

For us this has meant:

  • agreeing that we will try the ‘environmentally friendly or sustainable’ options but will stop if they negatively impact my health in any way. An example of this is cloth nappies. We are starting with them, but if we find it’s too much work we’ll look at alternatives.
  • taking time for ourselves before the baby arrives to go out for a nice meal, a movie, or some other event.
  • accepting hand-me-downs or buying things secondhand.
  • asking for gift vouchers for a nappy wash service if people want to get us gifts. This allows us to minimise the impact of using cloth during the early weeks when I’m recovering.

Pain Management while Pregnant: Living with Fibromyalgia and ME/CFS

06 Jul 17
Megan
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One of the issues I considered before we decided to even try to start a family was dealing with pain during pregnancy. Pain management while pregnant is a tricky topic. Many of the drugs available for pain management are either unsafe or untested for use during pregnancy. This was particularly true for the drugs I have found to be useful over the last few years.

There are some drugs that are safe to use but I made the personal decision to avoid taking drugs unless needed while I was pregnant.

PLEASE NOTE: I’m writing this post during my third trimester and publishing on my due date. By the time you are reading it, I may have had the baby.

Pain Management while Pregnant – drugs

The only prescription drugs I’ve continued using are my asthma medications (the benefit definitely outweighs the risks) and a very low dose cortisone cream for the rashes I’ve had on and off throughout the pregnancy. The doctor says these rashes are probably caused by hormonal changes.

When pain levels have been really bad I’ve been talked into using Panadol (paracetamol). However, because I know it doesn’t really do anything for most of my pains, I don’t take it often.

I also have a diazepam suppository sitting in my fridge for if the pelvic pain gets to a completely unbearable level. I haven’t tried this drug yet. It was recommended by my pelvic pain specialist as one that would be safe to use while pregnant if needed.

Avoiding drugs is a personal decision and one that I recommend you discuss with your health practitioner. I know of others with Fibromyalgia who have remained on some form of medication throughout their pregnancy as the benefits outweighed the risks for them. My main reason for deciding to take this approach is my tendency to react badly to many different medications.

Pain Management while Pregnant – physical therapies

– Acupuncture/Bowen Therapy

The pain management technique that has been beneficial for me during this pregnancy has been maintaining regular acupuncture/bowen therapy sessions throughout pregnancy. This maintained my ‘normal’ low pain levels throughout the first and second trimester.

In the third trimester my back, hip and pelvic pain increased. To deal with this, for the last month or so of the pregnancy I have increased my sessions to weekly from my usual 3 weekly schedule. I’m also hoping the acupuncture will help me to go into labour naturally before the hospital wants to induce me.

– Physiotherapy and Physical Supports

In addition to the acupuncture sessions, I have had support from several physiotherapists. The techniques they have suggested include a combination of massage, exercise and physical supports.

The physical supports they provided include a pregnancy support belt and a tubigrip. Both of these are meant to help with SPD pain. The belt I wore until I got so big that putting it on was uncomfortable. The tubigrip I wear almost daily to support my belly and hips. The only reason it isn’t daily is it makes the rashes worse so I balance pain and rash management on a daily basis. I also use my walking stick when needed to maintain my balance and reduce pain levels.

– Exercise for Pain Management

During the first trimester (and most of the second trimester) I maintained my pre-pregnancy exercise routine. This routine included maintaining a reasonable step count (I’d built up to 7,000 but cut back to around 4,000 by the second trimester), and regular yoga and gentle stretching classes at my local gym.

As this became more difficult I cut back to mainly water based exercises. The hospital I’m giving birth at runs hydrotherapy classes twice a week that I attend when I can. If I can’t, I do some of the exercises from these classes at my local pool at least once a week.

At home, I have focused on my pelvic floor strength and basic stretching.

Pain Management while Pregnant – other techniques

On top of the physical management techniques outlined above I have maintained my other pre-pregnancy pain management techniques.

These include:

Overall, pain management during pregnancy can be difficult. Especially if you live with a chronic illness and are trying to avoid medications as much as possible. Personally, I have found using a combination of physical therapies, meditation and relaxation allowed me to maintain my pain levels throughout most of my pregnancy.

First Trimester: Pregnant with chronic illness

06 Jun 17
Megan
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It’s my birthday and I’ve finally found some time to write!

As you’ve probably guessed I haven’t found the time and energy to write regular posts for the blog during this pregnancy.  As I mentioned in my last post, where I announced the pregnancy, I want to discuss what this pregnancy has been like for me. Starting with the first trimester, I’ll do a summary post for each section of this pregnancy.

Before I was pregnant…

As my regular readers would know, I’ve been living with Fibromyalgia and Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) (ME/CFS) for at least the last 4 years. I say at least the last 4 years, as that’s when it began to impact my life significantly. It got to the point that I stopped working and studying full time, and basically had no social life for a year or two.

During those first few years I spent a lot of time with doctors and specialists trying to get a diagnosis and working out what treatments and strategies worked (and didn’t work) for me in terms of managing the conditions.

Last year, I finally reached a point where many of my specialists were saying I was as well as I was going to get and that if we did want to start a family it was time to consider trying. After much discussion and research we decided that the potential risks were worth it and so we decided to start trying.

As a result, I stopped all my prescription medications (apart from seretide and ventolin for my asthma) and began focusing on other coping mechanisms.

The First Trimester…

Everything happened very quickly once we’d made a decision and I think both E and I were in shock to start with that it was all actually happening.

The research that we had done indicated that, for both the Fibromyalgia and the ME/CFS, a third of people feel worse during pregnancy, a third stay the same and a third improve. One of our biggest concerns was that I would be in the third that felt worse.

Thankfully that hasn’t been the case.

In fact, even though I suffered from bad morning sickness from before I even found out I was pregnant, my pain and energy levels actually improved during the first trimester. Enough that when we went on holidays to Queensland I was able to enjoy the trip a lot more than I thought I would.

Yes, I still had to rest daily and we had a couple of ‘do nothing’ days but I also managed to swim on the Great Barrier Reef and participate in a walk in the Daintree Rainforest.

Towards the end of the first trimester, my chronic illness symptoms settled back to what I consider to be ‘normal’ levels for me.

First Trimester Symptoms…

My main symptoms during the first trimester were:

  • constant nausea and ravenously hungry at the same time for the first 7 weeks
  • Increased energy for the first 7 weeks (less need for naps during the day)
  • Morning Sickness (vomiting started at 8 weeks and lasted through to 17/18 weeks)
  • Cramping
  • Decrease in general Fibromyalgia pain levels

First Trimester Management Techniques…

As I didn’t have too many symptoms, I didn’t need to change much in the way I was managing my health.

It was important that, although I had decreased pain and increased energy for those first few weeks, I continued to pace myself and not let myself get too run down.

When pain levels got uncomfortable my go to treatment options, which were all in place prior to the pregnancy, included:

  • warm (not hot) baths and showers
  • wheat bags
  • regular acupuncture (3 weekly)
  • meditation and relaxation techniques
  • maintaining a basic exercise routine (stretching classes and regular daily step count)

The last few weeks of the first trimester, and heading into the second trimester, got more difficult to manage as the morning sickness and fatigue got worse. Those weeks were spent mostly resting to avoid any major crashes.

Overall, the first trimester went well. I coped reasonably well with the new pregnancy symptoms because pain and fatigue had improved.

I avoided posting on the blog during this time, mainly because I didn’t want to announce yet and I was worried I’d say something that would give it away!

Postnote:

Before I take a break to settle into being a new mum I thought I’d make an effort to write a few posts and schedule them over the next few months, so hopefully my posts will be a bit more regular than they have been so far this year.

Just be aware that I might not reply to comments regularly from July as I think I’ll have my hands full for a while.

Announcement… Big News! (a long overdue update)

07 Mar 17
Megan
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8 comments

You may have noticed I’ve been missing in action lately. There is a very good reason for this and it’s time to make an announcement… Life has taken a major turn in the last 6 months.

Not only did we launch the Foggy Frog and the Pain Gang picture book in September last year, and help to organise and host a national conference in Adelaide in October, but on a more personal level E and I are expecting a baby! Due date 6 July 2017.

Yes, you read that right! We’re over half way to meeting this much awaited new addition to our family.

Why has it taken me so long to make this announcement?

Simple. I wanted to tell as many people in person as we could before I announced online. If I do know you offline and haven’t had the chance to tell you in person yet, I apologise. I’ve tried my hardest to see as many people as I could over the last few months but I felt that I couldn’t really hold off much longer with making this announcement as I’d been avoiding blogging until I was ready to announce.

Pregnancy, Parenting and Chronic Illness

Those of you who have been following me for a while, or who know me in real life, know how important the idea of being a parent is to me. You would also know how much thought, research and discussion has gone into the process of deciding whether or not to try for a baby. We obviously made the decision to try, but it was not an easy decision to make.

Living with several chronic illnesses has limited what I’ve been capable of achieving over the past few years. I’ve very slowly built up my work hours and my capacity to exercise and participate in social activities to a point where I felt comfortable coping with whatever impact being pregnant and being a parent may have on my health.

I know that it’s not going to be an easy process but it’s something that is important enough to me that I’m willing to modify what I do to make this work.

Over the next few weeks I’m hoping to begin a series of posts that talk about what it’s been like so far being pregnant with fibromyalgia and chronic fatigue syndrome. While reading these posts please remember that I’m sharing my personal experiences in the hope they’ll help others.

What I experience may not be the same as what you experience. In fact, the research I did before becoming pregnant showed that people’s bodies react in very different ways to being pregnant with these conditions. There’s no way to know how it would impact you in advance. All you can do is have strategies in place for coping with the wide variety of possible outcomes.

Anyway, enough of me talking for now… I’m just so excited to finally be sharing the news. We’re going to be parents!!!

Hello in there!

Life Beyond Chronic Pain – A book review

28 Dec 16
Megan
No Comments

Merry Christmas and a Happy New Year to all of you! I’ve been missing in action lately and early in the new year I’ll do a few posts explaining why. For now though, I’d like to talk to you about a book I’ve been reading over the last few months; Life Beyond Chronic Pain : The Step By Step Guide to Healing Chronic Illness Naturally.

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

life-beyond-chronic-pain-cover

Life Beyond Chronic Pain is a short e-book (only 46 pages including the covers) available via Amazon written by Jaime Hiedel. Jaime is a 30-something year old woman who lives with several chronic illnesses, including chronic pain and autism. She blogs over at I told you I was sick about “chronic pain, natural remedies, ASD, relationships and life…”

Book Structure – Ease of reading

As well as being a short book, each section is broken up into even shorter sections. This is great for those of us living with chronic illness who may find it difficult to read for long periods of time. Despite this, it still took me over a month to read the book – mainly because my brain fog was quite high the last few months and I was struggling to do anything that involved reading or working on the computer.

I found, at least in the introductory section of the book, that I was struggling to follow what was being said. I think this was more of an issue with my capacity at the time than an issue with the text itself but it did feel quite disjointed. Having said that, once I got to the actual details of how Jaime recommends healing chronic illness naturally I found that it became easier to follow.

Content – Healing Chronic Illness Naturally…

As the title suggests, this book is all about helping people have a life beyond chronic pain. Jaime talks about how it is possible to heal chronic illness naturally by following a certain regime.

Personally, I don’t like information that claims that you can completely recover from a chronic illness by doing XYZ. Thankfully Jaime doesn’t do that explicitly. Although she claims that it is possible to heal yourself naturally, she acknowledges that not every treatment option works for every individual. Instead she recommends an order to look into and experiment with different treatment options.

Jaime suggests that you need to:

  1. Eliminate
  2. Detoxify
  3. Rebuild
  4. Maintain

(in that order)

Based on my own experiences, I have to agree that the steps she outlines are important ones to go through. I believe that if you attempt to follow this type of program after first getting diagnosed you’re more likely to reach a point where you can have a reasonable lifestyle (even with persistent symptoms).

Within each section, she goes into more details with examples of how you can do each of these steps. Eliminating toxic people, drugs  and foods from you life. Detoxifying your body, mind and soul with different techniques. Rebuilding with a healthy diet, balanced lifestyle with meditation and exercise, and finding meaning and purpose in life. And finally, maintaining by being mindful about what you do with your new found energy and health.

Overall, I found this book a good way to reinforce what I have already learnt myself through trial and error. I would highly recommend Life Beyond Chronic Pain to people newly diagnosed, who are looking for where to begin.

CIB Holiday Giveaway

CIB Holiday Giveaway: It’s almost Christmas again!

22 Nov 16
Megan
3 comments

The CIB Holiday Giveaway will run from Nov. 23 – Dec 3, 2016.

This giveaway is sponsored by Chronic Illness Bloggers. Prizes have been donated by the following:
Alisha Nurse – https://theinvisiblef.com/
Aromafloria – http://www.aromafloria.com
BackPainBlogUK – https://backpainbloguk.wordpress.com/
Bridgwater Crafts – http://www.bridgwatercrafts.com/
BeingFibroMom – http://www.beingfibromom.com
Broken Teepee – http://brokenteepee.com/
Chronically Content – http://www.chronicallycontent.com
Chronic Mom Life – http://www.chronicmomlife.com
ColitisNinja – http://www.colitisninja.com
The Fay Farm – http://www.thefayfarm.com
Fed Up with Fatigue – http://www.fedupwithfatigue.com
FibroCane – http://www.fibrocane.com
Fresh Assist Spray – http://www.freshassistspray.com
Gupta Programme – http://www.guptaprogramme.com/
HFactorWater – http://hfactorwater.com/
Kirsten Schulz – http://www.kirstenschultz.org/
Living Well Today – http://www.livingwelltoday.com
Living Grace Blog – http://livinggraceblog.com/
Lupus Chick – http://LupusChick.com
Megan Schartner – http://www.liveken.com
Melissa Swanson – http://www.fibrowarriorslivinglife.com
Mini2z – http://www.mini2z.com
Natalie Abbott – http://www.stillicantbesilent.com 
Organic Aromas – http://www.OrganicAromas.com
Oska Wellness – http://www.oskawellness.com
The Pain Free Life – http://thepainfreelife.com
Patient Playbook – http://patientsplaybook.com
Perfectly Ambitious Blog – http://www.perfectlyambitious.com/
Posture Pump – http://www.posturepump.com
ProHealth – http://www.prohealth.com
Rebuilding Wellness – http://rebuildingwellness.com
Strength Flexibility Health EDS – http://www.strengthflexibilityhealtheds.com
Sylk USA – http://www.sylkUSA.com
Theraspecs – http://www.theraspecs.com
Vital Plan – https://vitalplan.com

Last year I participated in the Ultimate Spoonie Giveaway. This year, I’m joining in with the CIB Holiday Giveaway.

This event is even bigger and better than last year’s giveaway. Thanks to the number of people who have been willing to donate prizes, there are 11 Prize Packs, each with a value between $400 and $600.

I’m very excited to say that 5 of the prize packs contain an e-book copy of Foggy Frog and the Pain Gang. This is an exciting opportunity to get your hands on a range of products that others who live with chronic illnesses have found to be useful.

It’s important to note that 2 of the Prize Packs are available only to US-based winners. As winners are chosen at random, if a non-US- based winner is chosen for one of the US-only prize packs the winner will have the option to either have the prizes shipped to a US address of their choosing or to forfeit the prize.

a Rafflecopter giveaway

Top 3 worst symptoms

My Top 3 Worst Symptoms (and how I cope with them)

18 Oct 16
Megan
2 comments

I’ve joined a fantastic group of Chronic Illness Bloggers and this month we’ve decided to do a post across several of our blogs using a common theme. The theme for October is our Top 3 worst symptoms and what we do to try and help manage them.

If you blog about life with a chronic illness, I highly recommend joining the Chronic Illness Bloggers community. Not only do they provide opportunities for sponsored posts and product reviews relevant to our topics, I’ve learnt so much from the community about basic blogging and writing techniques.

Anyway, on with the post…

I can easily identify my top 2 worst symptoms (extreme fatigue and chronic pain) as they’re with me all the time. Selecting a third has been difficult. Anyway, after much thought and consideration, I believe my top 3 worst symptoms are:

  1. Fatigue (lack of energy) – I still don’t like the term fatigue but until I can find a better one it’ll have to do.
  2. Pain – Constant and continuous aching pain and more random stabbing and burning pains.
  3. Nausea – Not constant but when it hits it can be debilitating.

Over the last 3 years I’ve accepted that I’m not going to be able to cure my conditions and remove the symptoms completely. Instead, I am learning how to cope with them and manage them to minimise their impact.

Fatigue

I would say the constant fatigue, and the brain fog (Foggy Frog) that accompanies it, is the symptom that has the most impact on my life.

The frustrating thing with this symptom is that, until recently, I haven’t been able to stabilise it. Most of the time my energy levels were so low, and the fog so high, that I was struggling to function like a normal human being at all. Occasionally I’d improve and start being more active only to crash severely every few weeks or months.

Over the last 3 years I have tried many things to combat the fatigue (or at least minimise it). These include:

  • Acupuncture – ended up helping the pain but not the energy levels.
  • Diet Changes – has minimal impact on energy levels.
  • Drugs and Hormonal Therapies – While using testosterone supplements, my energy levels finally stabilised and my number of energy (and mental capacity) crashes reduced. I’ve recently stopped all prescribed medications again so I’m waiting to see what impact that will have on my symptoms.
  • Pacing – I talk about pacing a lot on this blog. I won’t go into detail here (you can read my other posts for that) but without pacing I wouldn’t be functioning at all!

Overall, I still haven’t found anything that improves my energy levels to any real extent. My coping mechanism for this symptom is just to avoid crashes and hope, that over time, my energy levels will slowly and naturally increase. Hormone supplementation and pacing are the two tools that work best for me in terms of minimising the impact of fatigue on my health.

Pain

My other constant companions, the Pain Gang, interfere with my life but over time I’ve learnt to just ignore any of the lower level, constant pains.

I have many more tools in my kit for managing the pain than I do for the fatigue:

  • Heat – I use hot (or at least warm) baths and showers, wheat bags, electric blankets, and heaters. Heat works to release muscles that are clenching too tight. When I get cold, my joints seize up and all my other pains flare as well.
  • Acupuncture – As mentioned above, I have regular acupuncture (every 3 weeks). This helps to release any tight muscles and can reduce my overall pain levels for up to a week after the session.
  • Meditation and Hypnosis – Mindfulness meditation and hypnosis seem to help me cope better when pain levels are high.
  • Low Dose Nortriptyline – I found that very low dose Nortriptyline (20 mg a day) seemed to reduce my pain levels as well. I tried several other antidepressants and anticonvulsant drugs. Some worked for a short while, but most had too many side effects or made no impact on my pain.
  • Supplements – I take fish oil, magnesium, and calcium regularly. When I don’t my pain levels increase, especially the joint pains.
  • Pain Killers (Panadol and Nurofen) – Although I don’t use pain killers regularly, I do use both panadol and nurofen during my period when the pelvic cramping is at it’s worst.
  • Exercise – It’s definitely a balancing act, too much or too little and pain increases. These days I try to maintain my step count between 4-7,000 steps a day. I’ve recently added in regular stretching and aqua zumba classes at my local gym.

Nausea

I have a very low level of nausea 95% of the time, but it only really increases and interferes with my ability to live occasionally. Right now my nausea seems to increase fairly often but luckily not to the point of throwing up. When I first crashed, my nausea made it impossible to keep anything down at all!

Because this isn’t something I deal with regularly I don’t have as many tried and tested methods for coping with it.

Generally I’ll take an increase in my nausea as a sign that I’m doing too much. I’ll try to find ways to step back and take time just to rest or meditate.

Ginger and Mineral water (or soda water) seem to help me out when I’m feeling nauseous. As does eating small meals more frequently and keeping up my fluid intake.

Do you have any tips for coping with nausea, pain or fatigue? I’d love to hear from you!

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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Remembering to say NO…

30 Aug 16
Megan
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4 comments

Hello, yes I’m still here and still alive. Today I want to talk to you about remembering to Say No.

I’ve been wanting to write this post for a few weeks now but have struggled to find time when Foggy Frog isn’t being a pain!

With so much going on, writing this post has been a good reminder to me that I need to remember to pace myself and listen to my body. Although physically I’ve been able to do so much more, I’ve found mentally I’ve been struggling the last few weeks.

This means it’s time to reevaluate again and find what I can step back from to achieve balance again.

Pacing is such an important part of my management strategy for the pain and other debilitating symptoms, such as the fog and fatigue. With the changes in my medications over the last few months my pain levels have been lower and, as I said above, I’ve been able to do more than I have in over 3 years.

I’ve joined a gym and have found that doing something most days (generally a stretching based class or a swim) has been beneficial for my pain levels as well. My step count is back to an average of 7,000; a level I haven’t managed since December 2014.

I’m still working on the Australian Association of Environmental Education Biennial Conference occurring in October, and my upcoming book launch on 24 September… less than a month to go! This has meant meetings almost every day about one thing or another.

As you can probably tell there’s a lot going on at the moment. In fact, it’s a little too much so I’ve been slowly stepping back from the conference planning and trying to work out what the essential things are for me to get done for the book launch to be a success.

I want to keep up my physical activity, as I’m trying to make sure I’m as healthy and strong as possible for when we start trying for a family (something we’re seriously talking about at the moment). So that means saying No to some of the other activities in my life.

Right now I’m saying NO to:

  • taking on any more for the AAEE Conference planning
  • to other volunteer opportunities that don’t have any connection to possible paid work in the future
  • meetings I can postpone until later

I’m saying YES to:

  • time with family and friends
  • actions that will progress the book launch
  • actions that will help me be healthier and stronger (exercise, diet, rest)

What do you say No to in order to say YES to the things that matter?

stigma of chronic pain

The Stigma of Chronic Pain

12 Aug 16
Megan
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5 comments

“It’s all in your head!”

“(S)He’s just faking it to get out of (work/school/insert activity here)”

” It can’t be that bad!”

“It must be good to be able to do what you want, when you want”

 

You just need to (exercise, eat this, do that) more/less”

 

1 in 5 people live with it but not many people understand it…

Chronic Pain

For the past 3 and a half years I’ve lived with a constant base level of pain, punctuated by periods of overwhelming and unbearable pain. Over that time I’ve heard many uninformed opinions and recommendations from strangers, friends and family, and even the professionals who are meant to be helping me. Sometimes I even judge myself, questioning if it really is all in my head. I’ve also heard stories from other people living with chronic pain that make the things I’ve heard sound trivial.

Statistics show that people living with chronic pain have a much lower perceived quality of life than the general population. I personally believe this is from the dual-impact of issues related to finding a pain management regime that actually helps and the psychological impacts of the myths and misperceptions surrounding these conditions which are invisible to those around us.

Managing Chronic Pain

Let’s take a quick look at the Pain Management Regime issues. There are many drugs and treatment options out there that can be helpful, however none of them work for everyone. For many with chronic pain, there may be no known cause or cure. This makes it difficult to work out what you should be doing to manage the pain. To top it off, if you do find a drug or treatment option that does help in some way, it seems more than likely that there’ll be side effects that make the treatment option not really an option at all.

Myths and misperceptions

Now, the myths and misperceptions surrounding chronic pain can be extremely detrimental to the mental health of those living with it. The constant disbelief and judgement of others can make you question yourself and the way you’re handling your condition. What makes it worse is that, for conditions like Fibromyalgia, there are still doctors out there who don’t believe in it at all and others who believe it is all in the persons head. These doctors send you off to a psychologist or, even worse, they do nothing and inform you to just push through it.

What we need is a better understanding and more empathy from ourselves and from others. We need to find a way to raise awareness of the prevalence of these conditions, and to counteract some of the myths and misperceptions. It is my hope that if we can get more people sharing their stories we can make a difference. There are still many people out there who do ‘just push through it’ because they have no support around them and they may not actually believe it themselves. It is only if we work together to raise awareness and to answer people’s questions that we can change the way people view chronic pain and make people aware of how big a problem it is in today’s society.

What can we do?

After meeting with Dr Meredith Craigie on Monday to discuss the Foggy Frog and the Pain Gang Campaign, I have realised the gap there is in information and support for younger people living with chronic pain; especially in Australia. As such, my goal is to initially focus the campaign on supporting this younger generation through teacher and parent education, and establishing a support group and related workshops and resources for young people living with pain.

My ideas are still in very early development phase but I hope with the launch of the Foggy Frog and the Pain Gang Picture Book in September I’ll be able to announce at least the first part of this wider campaign.

I’d love your input…

What do you feel are important points for teachers and parents to understand if they are to support young people with chronic pain?

What would be your number 1 tip for living a meaningful and fulfilling life with chronic pain?