The Stigma of Chronic Pain

“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.

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.

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.

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?

Separating me from M.E. (and other chronic illnesses)

Imagine waking every day and being unsure about what you’ll be able to achieve that day. You may wake up to pain levels so high that even rolling over in bed is too painful, or maybe your energy is so low that you can’t even get your eyes to open properly…

Maybe, like me, you don’t need to imagine this at all. Maybe you live with a chronic illness that makes your life unpredictable and very VERY frustrating.

When you have a chronic illness it can be quite easy to be hard on yourself for all the things you struggle to do, or simply can not do, on a daily basis. These things can be as simple as taking a shower or brushing your teeth. Things that others may take for granted.

One tool that I’ve learnt to have in place to help me and my extended family and friends cope better with my multiple chronic illnesses is to find a way to separate myself from the illness. When I’m unable to do something, I (usually) remember that I shouldn’t be angry or frustrated at myself. It’s the illness and it’s symptoms that I should be angry and frustrated at.

A great way I’ve found to separate me from my conditions, is to personify my illnesses (or at least the main symptoms I face). The characters I’ve created are Foggy Frog and the Pain Gang. By personifying my symptoms in this way I can say things like “it’s Foggy Frog that is making it difficult to make a coherent sentence today” or “Stabbing Spider that has taken my breath away.”

Having this separation between myself and my illness helps me keep a positive and open attitude towards my life. It gives me room to focus on the things I can do or the things around me that I can be grateful for.  I can focus on all the things I am; I aim to live as simply, sustainably and meaningfully as possible. I am passionate about working with others. I am a loving wife and caring friend. I am an advocate and an educator. I am not just my illness!

The separation also helps with my relationship with my husband. When he’s frustrated at what I can’t do, we can both be angry and frustrated at the illness and I don’t feel the need to take things too personally. We are able to talk openly about how we feel and, as long as we can maintain the separation between me and my symptoms, the anger should be aimed at the illness and not me.

The idea of separating yourself from your illness is generally discussed from the point of view of mental illness such as OCD, Schizophrenia, Bipolar or Depression, but I’ve found it useful living with physical conditions such as Myalgic Encephalomyelitis and Fibromyalgia and I’m sure it can be applied to many other conditions.

Chronic illness makes life difficult at the best of times. Having to deal with both constant and unpredictable symptoms can take a major toll on your self esteem and general mental health. However, by separating ourselves from our illnesses we can nurture a healthier relationship with our bodies, our lives, and our families that will allow us to remember who we actually are. We are not our illnesses.

What techniques do you have in place to separate yourself from your illness or to otherwise maintain your mental health?

10 great things and a half way update…

I had a wonderfully full weekend and got to catch up with several friends I hadn’t seen in a while.

It was fairly hot here over the weekend which (although impacting on energy levels) made for great weather for a trip to the beach and time spent outside.

Mid-way No Buy Challenge Update – Week 10

On Saturday E and I had a wonderful afternoon tea with Rach and her husband as a mid-way catch up for our 20 week No Buy Challenge (Yes, we’re already 10 weeks in!). We took the time to reflect on how the first half of the challenge had gone, my small discretions and temptations early on and Rach’s temptation that she managed to avoid in week 6.

We also considered the future, discussing whether this is something that would be ongoing for us or if we’d repeat the challenge in the future. For me the challenge has been relatively easy (I really don’t do that much shopping) where as it’s much more of a change for Rach. I’d probably continue (but more as a being mindful and intentional about things I buy then saying NO to all buying) and Rach straight out said no to continuing but would consider doing it again when they’re back from their trip (the reason she’s doing it this time).

10 Great Things about Me

Last week, while reading other blogs (something I try to do daily now) I came across a wonderful post on Chronic Rants that discussed how those of us with chronic illnesses can tend to focus on the negative impacts of our illnesses on our lives which impacts on our self esteem. She recommended that we should make a list of 10 great things about ourselves to counter the lowering of our self esteem…

Here’s mine:

1. I’m optimistic. I always (or almost always) see the positive side of things and don’t let the negatives overwhelm me too much.
2. I always have time for friends and family. Even if it’s just to listen to them and support them that way. This weekend was full of time for my friends. Afternoon tea with Rach on Saturday, lunch with another friend Sunday down the beach, and helping other friends with getting their house ready for rewiring in the evening (I sat and chat with V who’s expecting their second child in just over 4 weeks while E helped her husband with sealing everything they didn’t want dust to get into).
3. I adapt well. Life has thrown me quite a few curve balls (chronic illness being a major one) and I’ve able to adapt my lifestyle so that it hasn’t impacted too badly on my mental health.
4. I’m passionate.
5. I live by my values. Over the years I’ve learnt to identify what’s important to me and (partially thanks to being able to slow my life due to my chronic illnesses) I do my best to prioritise these values, my family and friends, living sustainably and looking after my health being the most prominent of these.
6. I love to learn.
7. I love to help others.
8. My friends and family love and support me in everything I do.
9. I’m (mainly) a positive person.
10. I’m unique!

I challenge you to make your own list of 10 Great Things about You. It does wonders for your self esteem.

Week 1 No Buy Review… Hot and Foggy

It’s been a week since Rach and I started our 20 Week no buy challenge and I may have already gone against my lists….

Let’s have a quick overview of the last week.

The weather here has been very hot and variable. Because of these weather changes my health has also been all over the place with the brain fog, fatigue and pain all higher than my normal levels. I’ve also been feeling mentally vulnerable at the moment due to a whole range of things happening around us so I’ve been very emotional.

That doesn’t mean I haven’t had some good times over the last week. On Friday night our local Council hosted one of their Moonlight Markets in the local park. My husband and I went along. We had dinner together and I bought a pair of earrings…

Now I’m still tossing up whether these earrings will be for me or a gift for someone else, but I feel that I’ve broken one of my ‘will not buy’ items…

They came packed nicely (see below) so at the moment they’re sitting under our christmas tree. They’ll either be a present for someone else or I’ll open them for christmas.

There were several times when, thanks to my emotional vulnerability, I was tempted to buy junk food or have lunch out by myself during the week but I didn’t!

Most of the week was spent resting, although I did manage a bit of work and also had a few appointments and social activities.

On the weekend (when the weather was at it’s worst) my husband and I went to the local shops to buy a lego set that we’d been looking at for a while that was cheaper than we’d seen it before. While in the shops we found the last book in the Obernewtyn series, a series that I have been reading for many years. Because I already owned all the other books we bought this one as well and I’ve spent a lot of time since then reading (started the series from the beginning again because it’s been 4 years since the last book came out).

Other than those two purchases (the book and the earrings) I believe I’ve stuck to my guidelines pretty well…

• We went and watched a friend playing ice hockey on Sunday morning. A nice way to spend such a hot morning!
• We had takeaway for dinner last night after a workshop I was running. This fits with my guidelines as it was a shared meal with my husband.
• We’ve done grocery shopping and purchased fresh local cherries, apricots and handpicked beans.
• I’ve purchased a set of stainless steel straws that I’ve been looking at for a long time. I often need to use straws but feel guilty about the waste they cause. Having a stainless steel straw in my bag at all times will mean I can say no to the plastic ones.

My zero waste eating out kit that lives in my handbag consists of a spoon, chopsticks, straw and napkin.

So there have been both positives and negatives this week. Let’s see how I fair in the next few weeks leading up to Christmas!

Check out how Rach did in the first week in her post here.

Have you been joining us on this challenge? If so, how have you been going?

The Difficulty of Pacing: Work

I’ve been so excited to hear from you all about your thoughts on the most recent A-Z guide to a simple, sustainable and meaningful life. One of the questions I’ve been asked to share more about is how work fits in to pacing with a chronic illness.

One reader in particular approached me with her current situation and I could see a lot of similarities so I wanted to talk about the issue in more detail.

This lady has ME/CFS like me. I’ll let her share her experience in her own words (modified for privacy):

I’ve been working on trying to get my activity level up for a while now but have only been keeping track of my daily steps for about a month. At the moment I seem to be averaging about 4000-5000 steps a day which I’m really happy with. I think a couple of years ago I would’ve been lucky to average 1500-2000. My main problem at the moment is that my step count is very inconsistent. It can vary anywhere from 2000 steps a day to over 8000 a day depending on the activities I have on.

I’ve now been back at work for just over 3 months… I’ve only been doing short shifts (3 or 4 hours) but these shifts involve being on my feet and walking around for most of the time. This makes it hard for me to pace myself and on a work day I don’t think it would be possible for me to keep my step count below 8000. I then find that the day after I have worked I’m exhausted and my step count is very low.

The issue here is the inconsistency. It’s something I can relate to strongly, on the days I need to go out of the house I tend to find myself doing double or more steps than on the days I’m home and can pace myself. I’ve also found it harder to avoid crashes since I’ve started working regularly.

My exercise physio has made it clear to me that the most important thing in order to avoid crashes is to be consistent. As the reader above stated, this isn’t always possible. It’s difficult to maintain a consistent level of activity when you have to do more on certain days due to engagements you can’t (or don’t want to) avoid, things like doctor’s appointments, work, important social events.

One thing I’ve done to try and help with consistency, is to consider it more on a week or monthly basis (rather than a day by day basis). That is, like the reader above, some days I do a lot more but I balance that out by doing a less on the other days.

I’m not completely happy with that approach though because some days I’m doing less because (like today) I literally have no energy left. What I’d like to do is find a way to pace so that even though I do more some days and less on others, I’m not doing the less because of crashes. I want to be doing it because I want to.

Pacing is about setting base levels and sticking to them for as long as necessary before slowly increasing them.

Since I’ve started working again, I aim to do a minimum of 5-8 hours a week. I break this down into smaller time slots. Some days this may be an hour at a time, other times (like today) it’s in 5-10 minute blocks…

I’m lucky in that most the work I’m doing I’m able to do from home and sitting down, but I still need to pace myself. I need to find the right balance of mental and physical activity to maintain my health.

In an ideal world, we’d be able to only work what fits with our health but in some roles (as with our reader) there are minimum shifts that you can do so if you’re going to work at all it’s likely to be too much to start with.

In response to the reader’s concerns I’d like to offer some advice…

If it’s possible to take short breaks, or even just ask for a stool at the counter (if you’re in customer service), that would give you a chance to pace yourself even within your shifts. However, knowing the area you are working in I know that the workplace isn’t always willing to be that flexible.

From what you’ve said to me it does sound like you are doing the best you can in your situation. It’s great that you’re tracking your activity levels and maybe you could look at working out what your baseline is.

How do you pace?

If you work, how do you manage the difficulties this can raise?

Z is for Zero

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we have been exploring each category of the A-Z guide to a simple, sustainable and meaningful life.

Thank you for joining us on this journey towards more simple, sustainable and meaningful lives. Over the last month we’ve talked about a lot that we need to continue to work on over time if we’re to succeed. Today we finish up by looking at Z… Zero.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

Z is for Zero

A simple life is one in which we’re aiming for ZERO (or as close to zero as we can get).

We’re aiming for zero stress, disappointment and waste (time, money, things).

If we’re realistic we know that this isn’t doable but it’s good to set our goals high. Each and everything we’ve talked about over the last month are small steps towards achieving this goal.

My ZERO includes reducing the negative impact I have on both those around me and the environment. That’s because this fits with my values, it may not fit with yours.

My ZERO means trying to live by Bea’s 5 R’s – Refuse, Reduce, Reuse, Recycle, Rot.

My ZERO also means learning to compromise. My husband’s values may not be exactly the same as mine. At times I compromise on waste coming into our home to meet his values as well.

My ZERO means spending as much time as possible with my family and friends, helping others as much as I can through my work and what I do in my spare time, and spending time by myself to focus on healing my body.

My ZERO is a life in which I feel needed, loved, supported and cared for.

What is your ZERO?

Y is for Yes

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at Y… Yes.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

Y is for Yes

Say YES!

Say YES to looking after yourself.

Photo (c) E. S. January, 2014

Say YES to living by your values.

Say YES to being the best YOU you can be!

Over the last few months I’ve made an effort to say YES to opportunities that have come my way. I’m being careful to try and keep pacing while I do this and I’m also giving myself permission to say YES to my health by saying NO to others when I need to.

By saying YES over the last few years I’ve taken up some exciting opportunities, including:

• Creating the Foggy Frog and the Pain Gang picture book
• Developing a 3-year Environmental Management Plan which will guide community sustainable actions within one of the Local Councils I work with
• Developing educational biodiversity trails for local schools in another Local Council
• Joining the executive committee for the South Australian Chapter of the Australian Association for Environmental Education through which I’m helping with organising and running a national conference later next year.

Without saying YES, I wouldn’t be doing any of these things but to be able to do them I also need to say YES to the following:

• Pacing myself and resting every day
• Eating as healthy as possible
• Listening to my body

What do you say YES to?

Don’t forget that the Ultimate Spoonie Giveaway is now open. Sign up here for your opportunity to win!

 

X is for eXperiment

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at X… eXperiment.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

X is for eXperiment

One non-formal way of learning is to experiment. Experimentation is essential for those of us living with chronic illnesses. For many of us there are no known cures (or even causes) for what we are dealing with. That means we need to constantly experiment with treatment options until we find ones that work for us.

Throughout my journey with chronic illness I’ve experimented with various drugs (antidepressants, lyrica, sleeping tablets, other pain relief). I’ve experimented with natural alternatives like the TENS machine, accupuncture, yoga, massage, meditation and visiting a naturopath.

I’m constantly experimenting with different routines, sustainable lifestyle options (like cloth toilet paper and napkins), and new healthy recipes.

homemade cloth toilet paper

Finding what brings you joy and wonder, and what you’re good at is only possible by experimenting with different ideas.

What experimenting do you do in your life?

 

W is for Wonder

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at W… Wonder.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

W is for Wonder

Like Joy, Wonder is an important feeling to have in life. It’s also a feeling that is surprisingly hard to find, especially when things aren’t going right in your life.

Take the time when being mindful to find wonder in the world around you. Wonder can be found in the smallest things…

The feeling of the sun on your skin as you sit in the garden…

The smell of the flowers…

The taste of a fresh cup of tea…

Without wonder, I wouldn’t learn so much. My wonder is what encourages me to keep researching and learning. It helps me through the tough times by giving me something to focus on.

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V is for Values

Join me on a journey towards a simple, sustainable and meaningful life. Throughout November we will be exploring each category of the A-Z guide to a simple, sustainable and meaningful life. Today we’re looking at V… Values.

This guide has been written from the point of view of someone living with chronic illness but the topics and concepts discussed are relevant to everyone and anyone.

I’m also going to cheat a bit with this post and use information from a previous post…

V is for Values

Everyone has values. Throughout this journey I’ve talked about how a simple, sustainable and meaningful life is different for each and every person and that because for it to be meaningful it has to be aligned with your values.

I’m going to suggest you do an activity to determine what your values are. This could be something like the 100 Goals Challenge I undertook last year. It could also be a discussion with your family to work out your shared values.

We’ve done this at LiveKen and, in no particular order, our values are:

• With the Community for the Community
• Make a positive impact (be sustainable and aware)
• Respect yourself and each other
• Be genuine and transparent
• Love what you do and do what you love
• Never stop learning

Let’s take a closer look at each of these and see what they mean to us, why we do it and how it is important for you.

With the Community for the Community

Every thing we do here at LiveKen is done with the Community’s best interest in mind. We also include the community in the development of everything we deliver to make sure that what we’re developing and delivering actually meets the needs of the Community.

Who is the Community?

When we’re talking about working with the Community for the Community, who do we mean by the Community? The simple answer to that is that we mean you, the complete answer is a bit more complicated than that.

Our Community are those who:

• are feeling overwhelmed by life and looking for a way to simplify it
• suffer from a chronic illness, such as Fibromyalgia, ME/CFS, MS or any other lifelong illness that interferes with their ability to live a ‘normal’ life
• Have multiple symptoms that interfere with life, such as constant pain, fatigue, and brain fog, but no diagnosis
• are simply struggling with life and unsure where you are heading
• are looking for guidance on living a more sustainable, fulfilling life

If you recognise yourself in even one of the statements above then you are part of our community and we welcome you to join us in identifying the issues and finding the solutions to solve them.

Our initial services are focusing specifically on those with health concerns and chronic illness but other services are on their way shortly, so please join us for the ride. Sign up to our newsletter to get monthly updates on what we’re doing, useful links, and special offers.

Make a positive impact (be sustainable and aware)

With every decision we make we consider the impact of that decision on our lives, the lives of others and the planet around us. We aim to make our impact on the world a positive one. Creating a legacy that helps others to live fulfilling and sustainable lives that have a positive impact on those around them.

By joining us at LiveKen, you are making the first step in the direction of a positive life change. You are making the decision to consider your health, those around you and the environment you live in when you make decisions.

We know that at times all of us will make decisions that don’t have a positive impact, but when this occurs we will learn from these experiences and make better decisions the next time.

Respect Yourself and Others

In the past we have lived our lives by pushing ourselves to the limits and trying to do as much as we can. For some of us, this has led to chronic illness and an inforced need to respect our own bodies. Because of this, and the negative experiences many of us have had since being ill, we are hyper-aware of the need to respect ourselves and each other.

You never know what other people are going through so try not to judge them. By trying to empathise with, and respect, each other and our own bodies we are able to listen to understand and not just to respond.

Be Genuine and Transparent

We only talk about things that we have experience with and an understanding of. We approach our products and services with open hearts and open minds. That means we are open to constructive criticism and will consider others’ thoughts and opinions on what we are delivering.

Through this blog we aim to be transparent about how we are working, what we are hoping to do, and what we’re able to do for you.

In many ways we are learning as we go. We do not claim to be experts in our field, instead we claim to know enough to help you and to find ways to discover what we don’t know so that we can help the best we can.

We will be honest when we don’t know the answer and, when ever possible, will direct you to the appropriate people if we know someone who is better able to help you.

Love what you do and do what you love

All of us here at LiveKen are starting out volunteering our time to get these projects of the ground because we believe in them and believe they are important to get out in the world. If you don’t actually enjoy what you’re doing then we will be asking you to stop doing it, if that means leaving us then so be it!

Because we actually believe in these projects, our aim is to provide as much as we can for free. However, we can’t live off air alone so we’ll be offering fee for service offerings to cover business expenses.

Never Stop Learning

To be able to Understand, Inspire and Empower we need to have that first step in place; we need to understand. A big part of understanding is actually knowing what is going on, as such continual learning through courses, conferences, interviews, reading and experimenting is key to LiveKen philosophy. We will be sharing what we learn through our blog, our courses and our other products and services.

So, there you have it! These are LiveKen’s values. We believe that these values fit well not only with staff and volunteers but also with our clients. If you believe in working with the community to develop services to assist the community, respecting yourself, others and the planet we live on, and continually learning to improve your own life and the lives of those around you then you have come to the right place!

What are your values?