Living with an Invisible Illness...

What do you think of when you hear that someone has

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?

Common perceptions of this illness range from thinking that sufferers just feel tired all the time, to an understanding of ME/CFS as a psychosomatic illness or a sickness for lazy people. Others think it means being a bit more tired for a year or so after having had glandular fever. Many people with ME/CFS are labeled as depressed and told that they are not physically sick at all.

As someone who lives with ME/CFS these misconceptions HURT.

ME/CFS is a real physical illness.

Much of the misunderstanding of this illness is because there is no one test that can be done to detect it, this side of an autopsy. Its symptoms are many and varied, and it is, in large part, an invisible illness. Like a mental illness, in a crowd we may look no different to the healthy person beside us. But that does not mean that we aren’t physically sick. While death is rare, ME/CFS has been listed as the cause of death by autopsies done in the UK, US and Australia. For the rest of us, while it may not take our life, there is much that this illness does take from us.

I hope, through this blog article, to correct some common misunderstandings and help others understand this illness better.

“It’s all in your head…”

ME/CFS is a physical illness NOT a mental illness. It is primarily classified as a neurological disorder, but also affects the immune, endocrine, gastrointestinal, cardiac and musculoskeletal systems. It can rear its ugly head suddenly or gradually over time, and last for a couple of years or for a lifetime. Most people with ME/CFS never recover full health.

It is true, however, that many people with ME/CFS also struggle with depression to some degree. If you woke up every morning for weeks, months and years on end feeling sore and completely exhausted, couldn’t work, couldn’t exercise, couldn’t go out and spend time with friends, had to adhere to a very restrictive diet because even many types of foods made you feel worse, and on top of that, no one seemed to understand, not even your GP. Imagine if, while enduring all of this, you were told that “it’s all in your head!” called lazy, fussy, a drama queen, and told that you’d get better if only you would exercise more and think positively… don’t you think you might start to feel a little bit depressed?

Just tired?

The name Chronic Fatigue Syndrome is an unfortunate title for this illness, because it encourages the idea that ME/CFS just means feeling tired all the time. That is so far from the truth.

Yes, as a sufferer of this illness I feel tired. But I’m not just talking about feeling like I could have done with an extra hour or two’s sleep. I’m talking about experiencing indescribable, bone shattering exhaustion, and tiredness that seeps into every cell of my body. Then there are all the other symptoms.

The symptoms of ME/CFS are many and varied. No one sufferer will experience the same set of symptoms to the same severity, but all will experience much more than just being tired. These symptoms are often so severe that it is common for people with ME/CFS to become bedridden for weeks, months, even years at a time.

Symptoms include (but are not limited to):

·    - Post exertion fatigue (can be caused by physical, mental or emotional exertion)

·    - Muscular and join pain.

·    -  Muscle weakness

·    - Dizziness and imbalance

·    -  Ringing in the ears

·    - Chemical and scent sensitivities/intolerances

·    - Sensitivity to light, touch, and/or sound

·   - Food intolerances, allergies and gut dysfunctions

·   - ‘Brain fog’ (an inability to process information or think properly)

·   - Recurrent ‘flu-like’ symptoms (including sore throat, swollen glands, aching, feeling as if you have a fever)

·   - Irregular body temperature

·   - Cold extremities/poor circulation

·   - Sensitivity to heat or cold

·   - Insomnia or hypersomnia

·   - Nausea

·   - Eczema or Psoriasis

Personally, some of my symptoms, other than the extreme exhaustion, include my entire body constantly aching, bad headaches, and sharp or intense pain in varying parts of my body. Some days I experience significant muscular weakness, which can make even walking or picking up a light weight difficult. I experience dizziness and imbalance at times. I am on a strict and restrictive diet, but still experience pain, stomach distention, frequent urination and other uncomfortable and unpleasant symptoms as a result of my stomach not being able to handle any and all food and drink that I consume. I cannot wear even ‘natural’ makeup without experiencing hay fever like symptoms. Scented candles, most types of hand wash, perfume, normal laundry powder and cleaning chemicals are a no go. My hands and feet are almost always cold and have a tendency to go a rather scary shade of purple. I often experience strong waves of nausea, especially when I have exerted myself too much. I am sensitive to light, particularly fluorescent lighting, which increases my fatigue, causes me to feel light headed and unable to focus either visually or mentally. I experience evidence of eczema or psoriasis and, at times, flu-like symptoms. And then there is brain fog, which has become a frustrating and sometimes embarrassing part of life.

“But you don’t look sick!”

Just because someone with ME/CFS looks healthy, doesn’t mean that they are. You might see someone smiling and chatting to others at a social gathering or at their place of study or work and think, “they don’t look sick!” But what you don’t see is the day/s in bed before to save their energy for just one or two hours at the party. You don’t see the pain, exhaustion and nausea they experience for hours or days afterwards. You don’t see the struggle behind that smile, the determination to push through despite immense fatigue and pain.

“It’s not like you have [insert other illness here]…”

ME/CFS is often compared to other illnesses and brushed off as an insignificant, or minor illness. This is extremely hurtful and is neither accurate nor helpful.

Compassion does not happen when you compare.

This article has been in large part about the ‘negatives’ of living with ME/CFS. That is because it is important for people to really understand the reality and severity of this illness. One of the greatest difficulties of having this illness is not feeling understood, to experience such a disabling illness, but not have that experience validated and understood, either by the general public or by much of the medical profession.

However, while I do get ‘down’ at times, get bored of laying in bed, get frustrated and upset that I can’t just do the things that I want to do, I choose to try to focus primarily on what I can do, rather than what I can’t. It is important for me to understand the limitations I face with this illness, and have compassion for myself in that, but to celebrate and be grateful for what I still have to offer.

For further information, take a look at these links:

·      www.mecfs.org.au

·      www.ahummingbirdsguide.com/wmauthorsshortmepian.htm

·      http://bechronicallywell.com/things-you-need-to-know-about-people-with-chronic-illnesses/

·      http://youtu.be/_ZgNR6KrQFo

·      http://youtu.be/IOflARSgNnE

Go Back...

Between June 21 and 23, at 8:30pm, I joined many other Australians in turning on my television to SBS for the three part documentary series "Go Back To Where You Came From". 

Like everyone else who watched, I came to the program with my own experiences, thoughts and feelings on how Australia approaches the matter of refugees and those who wish to seek asylum in our country. However, it is certainly a complex issue and one for which greater discussion and understanding by all Australians (including myself!) is certainly, in my mind, beneficial.

Although there are extremes on either side of this discussion, many people accept that it is good and right for Australia to assist and welcome UNHCR registered refugees who have applied through the 'appropriate' legal channels. These same people, however, reject the idea that Australia might assist and accept those who are not registered with the UN refugee agency and have not applied for Australian residency before arriving in Australian territory by boat. On the surface this seems an understandable viewpoint. Certainly, Australians are not heartless. In fact, Australian citizens have shown extreme financial generosity in the way we have responded to many traumatic situations, both within Australia and around the world. However, many would see that laws are put in place for a reason, and it is not fair for those who make the effort to apply through the correct procedures to be superseded by those who cut in line and choose not to do the right thing. As I have previously mentioned, though, this is a complex issue, and not one that can be properly explored without looking deeper.


Some of those who seek asylum in our country, including many who are fleeing the war-torn middle east, do not have access to either the UNHCR, an Australian embassy or any other means of applying for asylum and refuge in Australia through the legally prescribed channels. These people, commonly referred to as 'queue jumpers', in reality, have no access to this so-called 'queue' at all. Is it really fair for us to reject these people, who are trying to escape the extreme danger, fear and trauma of their homeland, simply because they have the added misfortune of coming from a country that does not allow them to make an application for refuge in Australia? 
Having said that, it does not seem right for those who have gone through the process of applying for asylum in Australia, to be left behind to suffer in UNHCR camps while those who arrive by boat are re-settled in freedom.
Why, though, does it have to be one or the other?


There is a limit to the number of refugees and asylum seekers that Australia can support and re-settle. However, I doubt that the several hundred who arrive in Australian waters by boat each year come near to the number that we can afford to accomodate.


Politicians have been heard to argue that a hard line must be taken to "stop the boats" due to the danger that less than seaworthy boats pose to the people that pay to travel in them. It is most definately true to say that those who operate the boats take advantage of human beings who are vulnerable and desperate, risking the lives of those who seek asylum in order to selfishly increase the health of their own bank balance. Unless action is taken to give these people seeking asylum a safe means by which to travel to Australia (in order to put the people smugglers out of business), or to solve the problem from which they are fleeing in the first place, how is "stopping the boats" really solving anything?


Somehow, our current government have come to the conclusion that sending those who come by boat to Malaysia is the ultimate and best solution. Malaysia is not a signatory to the UNHCR and is known to physically abuse those seeking refuge and asylum. They have also been seen to arrest and imprison refugees and asylum seekers with little interest even to whether they are registered or not with the UNHCR. As a result, those who come to Malaysia after fleeing persecution and danger in their country of birth continue to live in fear. Parents are unable to work, children are not free to go outside and play. Is it any wonder that so many human beings reach the point where they are desperate enough to take up a people smuggler's offer? Yet, that is what our government wants to send them back to. We have been told that those who enter Australian waters and are turned around  will be protected and kept safe in Malaysia by Australia. We have not, however, been told how long this protection will last and how they will manage to track the asylum seekers in order to make sure that they are protected and well cared for. These desperate and traumatised people will also be permanently denied resettlement in Australia.

In any case, if the intent is to "stop the boats" how is providing those who depart Malaysia by boat for Australia, due to the terrible mistreatment and fear they face there, with protection from that which they fear (even temporarily), going to help stop people desperate enough to choose to take that voyage in the first place? On top of that, this program is going to cost our country a heck of a lot of money that, quite frankly, could be better spent. And how does any of this actually acknowledge the trauma that these people have faced and respond with appropriate and humane compassion? 

In exchange for returning 800 asylum seekers to Malaysia, Australia will take 4000 UNHCR registered refugees over the next four years. Though it is truly wonderful for those who have been able to register with UNHCR and benefit from this scheme, the question remains: Is it not unfair for us to reject these people simply because they have the added misfortune of coming from a country that does not allow them to make an application for refuge in Australia, or because they have had their identification documents taken from them by people smugglers who they sought help from in utter desperation?


I don't have all the answers. I don't have a solution to the question of how all the world's people might be able to live in a place of both physical and emotional safety. But I do know that the answer does not lay with fear and judgement, but rather love and compassion. 

It's time to acknowledge and accept that this is about humanity, not politics.

Deciphering the Language of My Life; Discovering Vocation.

"Ruth", I said, "people keep telling me that 'way will open'. Well, I sit in silence, I pray, I listen for my calling, but way is not opening. I've been trying to find my vocation for a long time, and I still don't have  the foggiest idea of what I'm meant to do. Way may open for other people, but it's sure not opening for me."

Ruth's reply was a model for Quaker plain-speaking. "I'm a birthright Friend," she said somberly, "and in sixty-plus years of living, way has never opened in front of me." She paused, and I started sinking into despair. Was this wise woman telling me that the Quaker concept of God's guidance was a hoax?

Then she spoke again, this time with a grin. "But a lot of way has closed behind me, and that's had the same guiding effect."

- Parker J. Palmer, 'Let Your Life Speak' p38

.  .  .  .  .

A few weeks ago I decided to bite the bullet and enrol to finish my Bachelor of Theology in 2011. Having suffered from severe fatigue throughout 2010, it has not been possible for me to complete the 3 final subjects over the past year.  My health has not improved, but now I have a greater understanding of my limits. As a result, I feel I am in a better place to push myself through those last few units, over the course of a year. Besides, having come so close I just really want to graduate! (and hey, just as long as I can do enough to pass - 'P's get degrees!)

Having made that decision, and inspired by a friend with Chronic Fatigue who has decided to return to work part time, I was led to consider what I might choose to do following my graduation. I also like to plan for what I would/will do should my health improve, as I believe it one day will. My first thought was to maybe look into chaplaincy part time. I figured, I have a certificate in youth work and experience working with/for young people and my greatest area of strength/passion within Christian Ministry seemed to be in the area of individual pastoral care and counselling. As a chaplain, much of my time would be spent listening to and speaking with individual students. But then, I don't really like the idea of other areas of the job; having to plan programs and such. I like to be involved in a team of people when it comes to the preparation and facilitation of programs (and have some ability in this area), but have never enjoyed or done as well being the person in charge who has to get things started and make the key decisions. So, then, having been encouraged by several people as to my counselling skills, I looked into the possibility of doing a Graduate Diploma in Counselling. But even then, how do I know that this would be a fitting vocation for me?

The advice found in Parker Palmer's book, 'Let Your Life Speak' seems to make sense. Much can be learned from the doors that have been closed in the past. My problem is, how do I decipher the message that life is trying to give to me? How do I know the difference between that which caused the door to be closed, and therefore should be avoided, and that part of me that opened the door in the first place - and might serve as a guide to the vocation that best suits me?

Many doors have closed behind me...
Professional dancer? Closed.
Youth Worker? Closed.
Minister? Closed.
Administration Officer? Closed.


What are the qualities, abilities, passions, difficulties, that have remained throughout these many doors closing?

Well, I've always had an affinity with reading and writing. My mum says that even as a small child I was entranced by the written word. I was always ahead of my class when it came to reading. In addition, I wrote a lot of poetry from about 12 - 22 years of age, have written many journals and enjoy helping others to edit and polish assignments, letters etc. Taking a hint from this, and at a friend's suggestion, I began this blog and am VERY slowly writiing an autobiography. Turns out, sifting through years of memories and trying to come up with something someone might actually want to read is hard work! (if only I had someone who could help me with it! Anyone reading this who may know a writer who could help me, please feel free to let me know...)

I've also enjoyed public speaking in some form or another since I was about 12 or 13 years old. I'm not doing any of this at the moment but feel that maybe if I was to find a vocation that sat well with who I am, some sort of public speaking would be included. Maybe if I get my book finished one day, I could use my public speaking skills in publicising it? :).

I also know that whether or not I am involved in ministry or counselling in a formal capacity, people who are going through hard times will find me, and I will listen to them and help to guide them towards freedom from whatever is holding them captive. I enjoy this and have been told by several people that I have a gift in this area.

I also have a passion for the perfoming arts, dancing, singing, acting. I trained as a dancer to Tertiary level and may have gone on to have a career in this field if I had not chosen to explore ministry and youth work. I feel that something is missing in my life without this type of creative expression. Although it is different in many ways, public speaking does also tie in with this love of performance.

So, where does all this leave me? To be honest, somewhat exhausted! There are so many options, how am I to choose??

Maybe I don't need to.

Perhaps doing so is actually counter-active. 

Perhaps, living in the present, being mindful and aware of myself, is the best thing I can do. Because, in looking to choose a vocation or career, I am looking to something outside of myself and can be easily distractied and tempted by things out of line with who I am. But if I focus on where and who I am in the now (with an awareness of the signposts throughout my past) I will be better placed to receive and accept my vocation when it shows itself.

Besides, who knows what might happen in the next year!!

Happy New Year everyone! I hope that 2011 holds much joy and revelation for you :)

Thoughts on Suffering and Mindfulness

So often, a friend recently exclaimed to me, we see suffering as an interruption to life. Sure, we give lip service to suffering being part of life. When we are in the midst of it, however, we see it as an inconvenience; something that we will to be over so that we can 'get on with life'. 

What would it look like, if we learned to be truly present in all of life, including when we suffer?

Being 'present' in the moment, displaying grace and compassion in letting myself and others be where they're at, living life mindfully. Over the past few months this topic, theme, and thought, has weaved itself through my life. I have found myself considering these things in a variety of situations and experiences.

My younger sister first introduced me to The Slow Movement over a year ago and I have become increasingly interested in this movement which encourages a more mindful life. Mindfulness, as described on The Slow Movement website, "is a Buddhist concept that can be best described as awareness. Awareness of everything, awareness of our senses, our body, our mind." 

Jon Kabat-Zinn, professor emeritus at the University of Massachusetts Medical School believes that “Mindfulness is a certain way of paying attention that is healing, that is restorative, that is reminding you of who you actually are so that you don’t wind up getting entrained into being a human doing rather than a human being.” It opens up new dimensions of well-being and integrity, of wisdom and compassion and kindness in ourself.

This concept is also present in one of my favourite books 'Let Your Life Speak' by Parker Palmer, a Quaker. Through the sharing of, primarily, his own life story, Palmer shares great insight into the importance of getting to know oneself through living a mindful life. He implores the reader not to be dictated to by the expectations of others or self; acting out of a knowledge, relationship and compassion for yourself in choosing the decisions you make and actions you take. There is a Hasidic tale, Palmer tells, that reveals, with amazing brevity, both the universal tendency to want to be someone else (whether that be Buddha, Jesus, Moses, Mandela, Ghandi or anyone else) and the ultimate importance of becoming one's self: 

Rabbi Zusya, when he was an old man, said, "In the coming world, they will not ask me: 'Why were you not Moses?' They will ask me: 'Why were you not Zusya?'"

So what role does mindfulness play in the experience of suffering?

Jesus talked about 'Living life to the fullest'. I believe an attitude of mindfulness in all of life enables a person to get the most out of this life that we have been given. That includes during times of suffering.

I'm a highly emotional person, I experience the whole width and breadth of emotion. I have, as a result, felt at times, that I suffer more than others, because I really feel emotional pain. Whether that is true or not, I wouldn't change it. My experience of life is bigger because of it. 

Wouldn't it be great if we could see suffering like that? To truly embrace our suffering as way of experiencing the whole of what life has to offer?

No matter how much we try, we can't avoid suffering - so why treat it as a disruption to life and therefore cause it to be one?

As a result of a car accident last year, I have been forced to stop working, to stop my involvement in many things and to slow down. At times I have heard myself saying how "I wish I could just feel better". I have seen the suffering I have been, and am, experiencing as an interuption to my life. However, over time, I am discovering a sense of peace, joy and healing that comes with living a slower, more mindful life. I am learning to live a life of becoming more and more myself, where I take time to slow down, to observe and be aware, to 'sit with' what I am feeling physically and emotionally, instead of running away from these things, ignoring them, or being controlled by them.

This Christmas time, as the world seems to speed up and get so much busier, I encourage you to take the time to slow down, explore and consider if and how you might live a more mindful life.

Coffee & Shopping: Croydon, Dandenong Ranges, Richmond

Every now and then, I'll post my recommendations for cafe's, coffee shops and other stores in and around Melbourne and Australia. Unless stated otherwise, places listed are in Victoria.

Here's some I love, and highly recommend you visit!

Croydon

Cafe

Kofi Beans, Main Street.

This place has a great vibe, delicious food and drink, and is both eco & socially conscious. Winner.
Whether you love a good cup of Java (Organic & Fairtrade to boot), one of the best cooked breakfasts in Melbourne, a delicious dinner (made with local organic produce), or a browse around the Moroccan homewares on offer, it's all here.

Inside the cafe, the feeling is cosy. A variety of small tables and, if you're lucky, couches up the front, are a great place to sit and ponder the world or chat with a friend or two. If you enjoy being outside, the courtyard out the back is just gorgeous (and heated in winter).

Sure, it's a little bit pricier than some places, but totally worth it.

Shopping: Clothing

The Red Parasol, Main Street

Just a short walk away from Kofi Beans is this delightful store. Girls - If you're into good quality second hand and reasonably priced vintage clothing and accessories, you must visit The Red Parasol.

The lady who owns this store sources her products through auctions and markets around Australia and has new stock coming in most days.

My younger sister discovered this gem and I have since recruited several other fans.

The great thing about this shop is that it's a great mix of everything you love from both Op Shops and Trendy Vintage Boutiques.

You don't have to sort through too much crap to find the good stuff and yet it won't break the bank like the boutiques do. I found a beautiful Jacques Rue dress, tag still attached (with original price of $149-), I paid just $29. And an extremely cute vintage summer dress - just $12.

There is also an incredible variety of jewellery and other accessories.

Well worth a look - you won't regret it!

Dandenong Ranges

Cafe

Cafe de Beaumarchais, Mt Dandenong Tourist Rd, Sassafrass

I used to visit this shop to buy my coffee - Jasper Fairtrade Organic. There were huge bins of beans, the aroma filling the store and making my mouth water. The bins are now gone, and a new elegant and warm French style of decor has reappeared where once they lay. You can still buy a variety of Jasper's Fairtrade and Organic coffee range but the vibe is now more one of a cafe than a coffee dealer. I visited this place with a friend just the other day and thoroughly enjoyed the relaxing atmosphere, sitting in the dim light of the cafe, watching the world go by outside. What's more, the cake cabinet is a truly mouth watering vision, and currently includes 5 gluten free desserts, no less tempting than the others (more so, if like me, you are intolerant to wheat!). My friend and I devoured a beautful Lindt chocolate, raspberry and almond cake which was paired just perfectly with a cup of coffee (Mine: Soy, Decaf Latte, My Friend: Long Black)

If you need a break from suburbia, come for a drive and check this place out. While you're in Sassafrass, take the time to explore another tempting find, just 2 doors down...

Shopping: Food

Cream, Mt Dandenong Tourist Rd, Sassafrass.
A friend told me about this place and it really is delicious!
Cream showcases a range of delectable gourmet food; oils, bread, cheese, dukkah, vinegars, pastries, sorbet, sweets and tea blends. All the stock is sourced from small Australian family owned producers, mostly from Victoria and South Australia.
Almost all the products are available to taste, and trust me, it's worth doing. I particularly recommend trying the Chilli Lime glaze - yum! 
Cream also put on regular dinners for around 25 people, showcasing the produce they offer. Well worth asking about. They also cater for food intolerances and allergies.




Richmond

Cafe
Richmond HIll Cafe & Larder, 48-50 Bridge Rd, Richmond.
OK, so most people already know about this place but I still reckon it's worth a mention. A very popular cafe spot in the bustling Bridge Rd shopping precinct. Good coffee, great staff, for what I know the food aint bad either. What really sets this place apart, however, is it's cheese larder. After entering through the front door, to the left of the cafe area is the larder, filled with a variety of cheeses; different varieties and ages. Plus, for those of you who are are both a cheese lover and on a tight budget, like me, there are free samples available - yay! But be careful... once you try, it's hard not to buy!


Cafe
Chimmys, 344 Bridge Rd, Richmond.
Recommended to me by a friend, this lovely little cafe (cafe by day, restaurant by night) situated away from the business of Bridge Rd's shopping and discount outlet scene, is rated 4/5 stars on urbanspoon.com and for good reason. First and foremost, Chimmys has good coffee. (Fairtrade). Beyond that, its also known for it's beautiful fresh bread, and delicious sweets. If you're 'eating in' the atmosphere is cosy and comfortable - with tables ranging from intimate to large communal tables, big enough to lay out several copies of 'The Age'. Tables out front are perfect for a lazy breakfast, brunch, or afternoon tea. 
If you haven't already tried it, give Chimmys a go.






That's all my recommendations for today! If you have already visited one of my above recommendations, do so as a result of this blog, or have somewhere else that you love, please share your experience by leaving a comment.

An Introduction to The Carribean Pink House.

August Boatwright: "Well, I don't know. Some things in life, like the color of a house, don't really matter. But lifting someone's heart? Now, that matters."

- The Secret Life of Bees (2008)

 
In deciding on a name for this blog, I decided on The Carribean Pink House, not because my intent is to write only about things that I percieve to 'truly matter'.  I intend, in fact, to sometimes write about things that, seemingly, have no greater meaning than a great place to get coffee or shop. However, I do think August has a point. Even seemingly insignificant decisions as the colour of your house, are motivated by something bigger; point to what you truly value.


Leunig puts it this way:
'There are only two feelings.
Love and fear.
There are only two languages.
Love and fear.
There are only two activities.
Love and fear.
There are only two motives, two procedures, two frameworks, two results.
Love and fear.
Love and fear.'


My hope is that as I write this blog, reflect and consider life and share things I have learned and experienced, I would find myself continually encouraged to consider the motivation behind my thoughts and actions. Is it love or fear?

The Carribean Pink House

Lily Owens:  If your favorite color is blue, why did you paint the house pink? 

August Boatwright:  [chuckles] That was May's doing. When we went to the paint shop, she latched on to a color called, "Caribbean Pink." She said it made her feel like dancing a Spanish Flamenco. I personally thought it was the tackiest color I had ever seen, but I figured if it could lift May's heart, it was good enough to live in. 

Lily Owens:  That was awfully nice of you. 

August Boatwright:  Well, I don't know. Some things in life, like the color of a house, don't really matter. But lifting someone's heart? Now, that matters.

- The Secret Life of Bees (2008)