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Heros need to sleep too

I’m sure there’s a quote or a song about how our idols/heroes are only human like the rest of us. Anyway, that’s how I felt today when I was reading Julie Flygare’s latest blog post about her attempt to fight it out with napping. It was a bittersweet moment. Even though I’ve read her book and seen her speak about her narcolepsy, it’s sometimes all too easy to forget that she, I, and so many…

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Gattaca & Me

Since studying the film Gattaca in year 12, I don’t think I’ve watched it. Yet 12 years later it’s suddenly stuck in my thoughts. For those who haven’t seen it, basically it’s set in a time where natural conception of a child means they’re outcasts. Instead the norm is pre-selecting the genes of your child and essentially predetermining his or her life path. So why am I suddenly thinking about…

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Rare disease day - where do I fit?

Rare disease day – where do I fit?

Today is rare disease day.

My Facebook wall is filled with moving and inspiring stories from people with rare (and in most cases invisible) diseases. As I read them all an all too frequent thought enters my mind…where do I fit in?

Over the past 2 years I’ve been put in a range of boxes: ME/CFS, narcolepsy and EDS. But I never fit nicely into these boxes, it’s like I’m just shoved in with not…

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Hippy voodoo crap

I should start by saying that I’m not anti-natural remedies. But there is a time and a place for it.

Today at the train station a “natural healing” newsletter caught my eye. In bold, red text across the front read “You’re not sick, you’re just thirsty”. It then went on to claim that we shouldn’t be trying to medicate the likes of asthma and fatigue, we should be drinking more water instead.…

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Why isn't sleep cool?

Why isn’t sleep cool?

In a recent interview, Julie Flygare (narcolepsy patient advocate extraodinare), discussed the purpose of her not-for-profit organisation Project Sleep. She mentioned that for some reason sleep isn’t cool, and she’s right. We are constantly bragging about how little sleep we’re operating on as we guzzle down oversized coffee and energy drinks.

Why does “I’m working on 4 hours sleep today” sound…

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Cold or relapse?

A common part of ME/CFS is flu like symptoms. This can vary from person to person, but for me swollen glands and difficulty swollowing is my key inicator that I’m in for a relapse. I would say that it is the CMV (the glandular fever cousin that started this whole thing for me) kicking in again. The problem with this is that I….

It won’t be until I’ve had a good night’s sleep that I’ll know the…

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Medical seminar

Today I attended a medical seminar run by ME/CFS Australia (Vic, Tas, NT). It was fantastic! For 5+hours I hung off every word that was said – and as someone with chronic illnesses that interferes with my concentrations levels…that’s saying something!

Obviously I can’t write out the complete running of the day, but here are my key takeaways from the day:

There are medical professionals and…

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To the ALS ice bucket haters

Over the past week the ALS ice bucket challenge has taken the world by storm. For the most part it has been met with laughter and of course much needed awareness and fund raising. But, as with everything, there have been some haters out there.

Why ALS? How is this helping them? When will it stop filling up my social media news feeds?

While all these comments annoy me, there’s one comment that…

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Should probably start acknowledging EDS...

Should probably start acknowledging EDS…

Since my ‘off-the-cuff’ diagnosis of ehlers-danlos syndrome (aka EDS) from a specialist I saw last year, I’ve admittedly not given the condition much attention. But as I head to my osteopath with one of my ribs out of place, I’m thinking I should probably educate myself a bit more about this condition I’ve had since birth.

Unknowingly, EDS has played a part in many of my ailments over the years.…

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Choose your spoons #2

A day in spoons

I’m not crazy, I’m just a little unwell: Depression or Narcolepsy? Someone in a narcolepsy Facebook group recently asked the question “Before being diagnosed, what disease/s did they think you had?” Within minutes there were 6 responses.

Ramblings: Time to think about ourselves.

Why do we compare ourselves to others when we’re sick or having a bad day? When we hear about someone with a terrible illness, why do we put down our own problems as being trivial in comparison? Why do we refer to our troubles as “first world problems”? I’ll readily admit that I’ve done (and do) all of the above. But lately I’ve been thinking…is that really helping anyone? Sure, my health…

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Steps to overcoming the biggest ailment of my illness: Guilt

Much like a large proportion of people with ME/CFS, I have a Type A personality. Essentially this means I’m an overachieving perfectionist. Because of this I am often overcome with guilt if I can’t complete a task the way I’d like.

For example, last week after a day of doing the CFS program and logging a couple of hours of work, I then had to go to the supermarket to get something for dinner and…

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Standing on the tram with my eyes closed: rehab weeks 3 & 4

I am exhausted!

When I started this rehab program I was told that by the week 4 mark I’d be likely to feel worse than normal. Well…they weren’t wrong! Whilst the program hours are less than if I was at work, it’s still somewhat tiring. But not in an overly bad way. It just hasn’t helped that I’m still juggling work alongside the program.

I think that for the most part my exhaustion is mental…

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Rebab Week 2: Hitting the reset button

I’m now at the end of week 2 of the CFS rehab program. Whilst this week has still been an introduction to the elements of the program, I feel like I’ve come out of it like I’ve hit the reset button on my life and habits.

A lot of this week has focussed on self awareness and beginning to set small goals. Through this blog I feel that I’m already aware of my condition and my physical, mental and…

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Rehab & optimism

This week I started my 8 week rehab journey with the Royal Talbot.

The program started with a session explaining chronic fatigue and the program. Family and friends were invited to attend mostly so that they can learn a bit about the condition and understand what it is their loved ones will be going through over the next 8 weeks and how they can support them through it. Throughout the session…

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