Thursday, 20 December 2012

The worst things you can say to someone with CFS

I have to admit that when I was first diagnosed with CFS, everything that everyone said to me to help just made me feeling overwhelming down and even more disappointed in myself than I'd ever been before. Here are a list of the things that hurt the most:

* "Yes, I'm tired too"- I've gone into this a little bit more here, but comparing everyday, running around tiredness with CFS is like comparing a walk around the park with a marathon. Please remember though if you're on the receiving end of this comment that is it only said with love and good intention. It's such a crazy illness and people would love to get a glimpse of what you're going through.

* "Are you depressed? / Do you think it's depression?"- granted, the symptoms of depression are similar in a lot of ways to CFS, but people with CFS at their core aren't usually depressed- just frustrated and dying to pick up where they left off. Occasionally people with CFS might be slightly down, but the CFS is causing this feeling rather than the other way around.

* "Come on, let's go shopping / Let's get you out and about"- this is the #1 way most people will try and help you. Say gently and with gratitude that you're not up to it today, but would love to go some other time. If however you do feel like going out and feel that you could cope with it, be honest about what you think you can do and for how long. My main problem when I was recovering was not being honest with other people and, more importantly, myself, about how much I could cope with. Cue: feeling like I was on the verge of collapse in supermarkets and shopping centres. A walk around the park or a car trip to the local shop might be just what you're looking for.

* "Snap out of it!"- trust us, if we could, we would! It's incredibly hard for people to understand CFS, but please don't blame others for frustrated outbursts of their own. They just want to help you and have no idea how or where to start.

These are just a few I've experienced, but I'm sure there are many more. Please feel free to share them in the comments below, even just to vent for while!

Remember, always approach your family, friends, your illness and yourself with love, kindness and patience.

Love and light,

Wednesday, 19 December 2012

Why the term 'Chronic Fatigue Syndrome' annoys the life out of me

The clue's pretty much in the name- Chronic Fatigue Syndrome. But this only touches on a fraction of what people with CFS go through. How about the ironic and utter inability to be able to sleep half the time, especially at night? How about the headaches, nausea, muscle aches, bone aches, brain aches, brain fog and the inability to be comfortable with light and sound?

The term 'CFS' apparently is used today as an umbrella term to encompass all manner of illnesses in which fatigue is the main symptom, but to be honest, fatigue accompanies a lot of illness, none of which are even within the realms of CFS or M.E. In 1959, E.D. Acheson an early investigator of benign myalgic encephalomyelitis (M.E), wrote: "The wisdom of naming a disorder, the nature of which cannot at present be proved, and which may be due to more than one agent, is debatable." This is one of the many controversies surrounding CFS. Well said, that man.

I know we all get tired, I know that. In the end, I stopped telling people I had CFS, but just had a bit of a virus, so I wouldn't have to deal with the, "Ah yes, I'm exhausted too" line. It just gets too much in the end, and you end up sounding like a stuck record, that's if you have the energy to answer back in the first place.

In all of this, I've learned to practise patience. Patience that one day the medical profession might improve their consciousness and compassion towards everyone under this frustrating CFS umbrella. Patience that everyone who cares about you will care about you and not the strange stigma attached to CFS. Patience that your healing has arrived and will come to you.

Peace and love,

Katie     xxx

A little about me...short version

This blog is different. No medical reports contradicting each other, no unanswered questions, no darkness. This blog is about light, friendship and support.

Having been ill since the age of 18 with CFS (Chronic Fatigue Syndrome), I've finally reached the point in my life where everything seems to have levelled out for me, and I'm finally moving forward. I discovered last year, through means I will discuss in this blog, that I had been living in absolute fear for years... fear of what my parents thought, fear of what my friends thought, fear of the future, fear of the name it, I probably dwelled on it more often than I should've done.

I know how terrible CFS, so I know that it's not as easy as saying, "Get over it". Believe me, lots of people have thought this comment would snap me out of it over the years! I also know it's not as easy as saying, the 'fear'-based thing worked for me, therefore it'll work for you too. My aims with the website are to introduce a few ideas, topics and people that I have found inspiring. I would like to:

* Reassure you that even in the darkest depths of what you're going through you are not alone
* Create a community a people who can spring ideas and feelings off each other in a supportive, beautiful way (this was something I had no access to when I was ill)
* Although touching on medical stuff, we will explore alternative tricks which may help you in your journey
* Introduce the concept of Energy Medicine, which for me, really changed my life and health
* Share with you some amazing guys, gals, books and organisations that I am forever grateful too for bringing me to where I am today

I hope you find just one thing on this blog that resonates with you and brings a little light to your day.

Please feel free to contact me at

With deep gratitude and love,
Katie     xxx

Saturday, 8 December 2012

The Power of Words

I've always been a big believer in expressing yours words in a way that in comforting and empowering to both yourself and others. The video brings a slight lump to my throat and I never tire of watching it. Enjoy!

Love and harmony,

Thursday, 6 December 2012

Yoga and CFS- Getting the Balance right

Over the years I have developed a love of yoga and feel the benefits straight after class. I'm one of those people who goes to yoga for the spiritual benefits, rather than for getting fit and toned, although those are great reasons too. I particularly love hot yoga, but please be advised, this is not for everyone, especially in the early/transition stages of yoga. I've really had to learn to listen to my body and not go crazy doing too many classes at once.

Yoga and having CFS has been a bit of a rough journey for me. At first, I was absolutely delighted to even make it through a class. Then, I would convince myself on the journey home that I would probably get ill in the morning, that I'd put my body under too much pressure. Low and behold  the morning after, I was achey and berating myself for even trying (there's that mind-body communication again!) I'm currently living in Sydney where everyone gets up really early to go running and surfing, and people are generally super fit and healthy  So, why couldn't I do more than one yoga class a month?! I'd gone from being happy with one class a month, to beating myself up for not doing 4 classes a week!

The key to yoga is taking to slowly. There's a bit jump between being bed-ridden and trying to do some 'easy' yoga stretches! It's a lot harder than it looks! Here are a few tips to help you along the way (again, I'm by no means an expert, so please listen to your body and do some further research):

* Investigate studios near your house, so you don't have to worry about travelling to and from class, or being exhausted after it and having a long commute.
* Research different yoga types- I absolutely love Ying Yoga and could quite happily do every class on the schedule! Yoga Nidra is also very relaxing and focusses a lot on breath work and meditation. Yoga Nidra is thought to aid sleep and actually translates as 'yogic sleep'.
* Make sure you phone or email a studio you are interested to ask if they feel they can cater to your needs or if there is a specific instructor in mind who could help you.
* Before attending your first class, make sure the instructor knows that you have been ill and are still recovering. Also, be sure to tell them about any muscle pain or difficulties you have. You're probably not the only one experiencing some form of physical pain or discomfort, so don't feel that you're alone in needing adjustments!
* If you are in class and feel the exercises are too difficult, there is no shame is recovering by going into Child's Pose. This has been one of the biggest challenges for me, as I always want to push myself and seem to compare myself to others quite a lot.
* Make sure you drink lots of water before and after class, and also prepare yourself a lovely nourishing meal afterwards. Many people recommend not eating 2 hours before class, but ask the studio to see what they recommend.
* If in any doubt, check with your doctor before attempting classes and if you don't feel strong enough, don't go!

                                                              Image found here

Yoga is meant to be relaxing and pleasurable, so remember not to push yourself or put to much pressure on yourself. Classes are supposed to be fun, not torturous!

Love, Katie

A radio interview for confused relatives and friends

I've just listened to this radio interview via ABC Australia and would love to know your thoughts on it. Dr Nicole Phillips is interviewed as the Medical Advisor to M.E./CFS Victoria about Chronic Fatigue Syndrome and gives a brilliant analogy at the beginning that will help anyone trying to relate to your condition to understand it more fully. Despite the humour of the interview, I'm so glad that the illness is being addressed on a national level.

Have a listen and let me know what you think!

ABC Chronic Fatigue Interview

Love and sunshine,

Helpful C.F.S/M.E. and Fibromyalgia Links

I just thought I'd put together a few useful websites that really helped me out, especially during those early days when I had no idea what was going on, and neither did anyone else! I really hope you and your family find something useful in them:

AYME (Association of Young People with M.E.)
I joined this amazing group when I was first diagnosed in the UK and it was an absolute godsend. They send out monthly magazines, all free of charge, packed full of drawings and stories from members. I was so honoured to be asked to be AYME's librarian and loved sending out books and good wishes to members. There's also a Serious Affected Members' section (SAMS) and a Graduate group.

M.E./C.F.S Australia
Full of useful links, as well as links to regional support groups and their associated sites. Lots of inspirational stories to be had here too!

CFIDS and Fibromyalgia Self-Help
A fantastic website for the later stages of CFS, offering free courses in helping you to pace your activities. I personally find this website very helpful and surprisingly comprehensive.

I will add more website once I finished my research and let you know! Please get in touch if you have any sites that you find useful and we can share them as a group.

Love and light,

Accepting the now for what is it- the key to healing

I've known for a while that I'm quite stubborn. I've always prided myself on being independent, paying my own way, doing my own thing, but my concept of independence changed completely once I became very ill. My parents had to look after me, and me being so ill, I didn't really have a lot of say in the matter. I think looking back, when I became well enough to walk around and do small, everyday tasks, I was actually quite angry and sharp with my parents, because they'd fussed over me for so long and my independent self didn't quite like that. But now, I'm grateful to my parents for dedicating themselves to my recovery in what must have been a worrying time for them.

Ahh, the power of hindsight. Even when I went into teaching and had to take occasional days off, I would spend days feeling really angry with myself, wondering what my colleagues would think of me and about the mountain of work that was probably building up. The last thing I thought about, ironically, was resting up, so I could get better and allow my body to recover. Even as I'm writing this, I  think about how strange these thoughts are. I'm not surprised that in most cases my worrying caused my illness to linger for longer than I would've liked.

This was when my interest in mind-body medicine began. As soon as I began to accept my situation (believe me, this took years!), and not wish it away, pretending it wasn't happening, my perspective changed. I grew more patient with myself and began to feel grateful that my body was sensitive enough to let me know if I was pushing things too much, or if I could afford to use more energy. If you're suffering from CFS though, you'll know that this is a fine art. If I had a dollar for every time I thought I was ok and pushed on anyway, only causing myself more pain and fatigue, I'd be a very rich woman! It's a bit of a vicious cycle, one which others rarely understand however much you try and explain, but if you stand back and accept the situation instead of fighting it, you might find yourself in a better situation, both physically and mentally.

                                                                       Image found here

Make 'acceptance of now' your goal for the next 10 seconds, the next minute, the next hour, today and all your tomorrows....

Love and acceptance,

Monday, 3 December 2012

Inspiring links and loveliness

Aaahh, the power of the internet. Some of you will know what it's like, especially during the early stages of CFS, to not even be able to stand the light coming through closed curtains, let alone the light of a computer screen. But if you're feeling strong enough, I thoroughly recommend these blogs and websites to help you get through the day. Even if you ask a family member or friend to read some of the blog out to you, I'm sure you will find one thing in them in which to find hope and inspiration:

Danielle LaPorte

Every time I log on to Danielle's website I get the wind taken out of me a little bit. She is overwhelmingly dedicated to helping you achieve your life's goals and to help you connect with your highest self. Her videos pack such a punch, I find myself utterly speechless afterwards.

A Life of Perfect Days

Written by the gorgeous Connie, 'A Life of Perfect Days' always perks me up and leaves me feeling absolutely unstoppable. Her advice and tips are second-to-none, and I am truly grateful for being a part of the community she has created.

The Wellness Warrior

Jess is a true example of health and abundance, and is dedicated to helping others instigate their own healing. Although lots of the things she mentions might be more relevant later on in your healing journey, she definitely gives me a lot to think about. The Inspiration Boards Jess publishes every Friday really keep me going!

In Spaces Between

Beautiful name, beautiful blog, beautiful lady. Rachel's site is a big bite out of life and features gorgeous photos, inspirational articles and ideas for the dreamers amongst us. Going on her website is like breathing a huge sigh of relief...just lovely.

Email mailing list of the week: Striking Truths

This is the first email I open in my inbox every morning- a daily or weekly source of incredible inspiration and knowledge, all beautifully packaged.

I thought I'd just start with a few to keep you going. Please do let me know if you have any other suggestions or if you yourself have a blog you'd like to share with us. Happy browsing!

Love and light,

Sunday, 2 December 2012

Stepping up to the challenges of 2013

I don't think I'm the only one who thinks that 2012 has quite possibly been the quickest in recent years- blink and you'll miss it ups and downs, thrills and spills. I have to admit this year has been more about the bad than the good, but that's the reason why I'm looking forward to 2013 so much. It's not a case of, "2012 was so bad that 2013 must be better"- this year was fabulous. I got engaged, upgraded my living space, and most importantly, discovered after all these years that my passion is the key to my future happiness. For these things and for the experiences brought to me in 2012, I am truly grateful. This only means however that 2013 is going to be even better, which seems unfathomable given the year we're just about to draw to a close.

Unfathomable, because it's going to require action and blind faith on my part. I'm going to be out of my comfort zone every day, and to be honest, I'm absolutely petrified. I know there'll be some days when I want to play safe and hide away, but it's not an option. It can't be an option.

What are you looking forward to about 2013? What are you absolutely terrified of? Love or fear?

Sending love and healing energy your way,

                                                                   Photo taken from here