Heroes 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 others are all facing the same battles. One thing those of us with chronic illnesses do so well is mask the true extent of how we feel day-to-day. It’s not to say that it is a bad thing; we need to do it in order to survive. All too often I find myself thinking, or even believing, that everyone else has their lives totally under control, while I fumble from one day to the next. But as I read hers and other people’s stories, I am reminded once again that we are all human and when we’re living with the same medical condition, we are all experiencing the same hurdles.

And I don’t think this is just the case for those with chronic illnesses. I’d bet that everyone has their battles that they feel they’re the only ones facing, when in actual fact, we’re all just as lost and confused as each other.

When we’re kids it’s encouraged to ask that seemingly dumb question in class, because chances are there’s someone else in the class who’s just too shy to put up their hand. But for some reason that mentality seems to leave us when we’re adults. Suddenly it’s not so ok to need to ask for help.

So thank you Julie for your blog post about your struggles in raising your needs in the workplace. It’s just nice to know there’s a voice out there telling us that we’re not alone.

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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 this film and what’s it got to do with my illness blog?

Well, in May I volunteered to give a group of medical researchers in America a sample of my blood. The purpose of their research is to check for a particular marker thought to be related to narcolepsy.

This genetic marker subtype is known as DQB1*0602 and I have it. So was my fate sealed like in the film?

I received my letter yesterday telling me the result. The researchers were very careful to explain that this is not a diagnosis, and there are people with the gene who don’t have narcolepsy and people with narcolepsy who don’t have the gene. Even so, the news hit me in a way that I was not expecting.

Despite my diagnosis 2 years ago, there’s always remained a question mark as to whether I do indeed have narcolepsy, especially as I don’t have cataplexy. Whilst I thought that this uncertainty was just making me depressed, it seems that it was also my glimmer of hope that perhaps the diagnosis was wrong and that one day I’ll get a different diagnosis and find a better treatment (or even a cure).

But now I feel that the hope has gone. I have to accept the fact that I was quite literally born this way. That little mutated gene has made me susceptible to getting narcolepsy.

So I guess now I need to try and refocus my hope because I need that something to hold onto and help me keep fighting. I’m 30 and as each person *jokingly* told me as I hit the big 3-0, my body is now going to start falling apart. Turning 30 didn’t scare me, but falling apart sure as hell did!

Am I just going to keep getting worse? I’m terrified of the thought of no longer being able to work, play and live a “normal” life.

For now all I can do is hope that this genetic marker one day help me find treatment or at the very least, answers.

I WILL be the Ethan Hawke of my story and I will keep fighting. At least that’s what I’m going to keep telling myself…

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 really enough room to really fit in there. Each diagnosis I’ve received has been shadowed with a “it’s close enough to what you’ve got”. So whilst I have these diseases to relate to, the truth is…none of them are a definitive answer to my 12 years of questions.

I know I should be thankful that none of my symptoms are individually bad enough to fully classify me as having these diseases, but it is human nature to yearn for a sense of belonging. Of course I’d much prefer to belong into the “healthy” group, but short of that…I’d like to belong somewhere.

With each diagnosis I’ve joined a number of Facebook support groups. Of these groups, only one feels like I belong. It feels like home. So with that group in mind, today I will discuss narcolepsy.

Narcolepsy isn’t a lack of sleep. It isn’t psychological. It isn’t like in the movies. Narcolepsy stems from a loss of cells within the brain (and no, I haven’t killed off my brain cells and I’m not brain-dead). This particular part of the brain helps to regulate the sleep/wake cycle among other things. So instead of daylight telling my brain that it’s time to be awake and night telling it it’s time to go to sleep – it works off its own system that it appears to just make up as it goes along. With the aid of stubborn determination and very powerful medication I get through the day without falling asleep. So while I may appear alert and capable of getting through a day with ease, the truth is, for 12 years I’ve worked my way to an Oscar worthy performance of being “awake”.

There are only a select few who have seen what has become the “real” me. I don’t hide my true feelings and pain from you because I don’t trust you, I hide it because I don’t want to be that person 24/7. I live with the fear that if I cave into these diseases, then I won’t ever leave my bed and I’ll be trapped.

I much prefer being the best damned actress I can be and enjoy and live life to the best of my ability.

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. Great! So I’ll stop taking my puffer and just drink the chest pain away instead?

I then got on the train and started flicking through my Facebook feed only to come across an article about a child who died because of the latest raw milk fad.

What?!

If I’m not mistaken, there was once upon a time a little scientist by the name of Louis Pasteur who found a way to STOP milk from killing people. Pasteurised milk, anyone?

I can only assume these are the same people responsible for the anti-immunisation movement. I can’t even begin to understand what the hell that’s all about.

Oh so you want to revert back to the old, organic way of life? NEWSFLASH! Life expectancy was 30 back then. There’s a reason we now have immunisations, medications and pasteurised milk. We’ve evolved for a reason. Wake up!

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 cooler than “I was in bed by 9.30 last night”?

Study after study comments on how much sleep we need a night in order to function at our full potential. Anyone who’s ever been sleep deprived knows how much extra effort it takes to get through a day without adequate sleep the night before. If this bragging about how little sleep we’ve had is to prove how much better we are from our peers, surely we’d be better off having a good night’s rest and being able to perform at our absolute best to prove our superiority if that’s what we’re after?

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 researchers out there who believe in us! I know it’s hard to believe…but it’s true! I saw it with my own eyes today.

Don’t settle with “You have ME/CFS. There’s no cure. Goodbye”. I’m not saying that ME/CFS doesn’t exist – we know that it does. I’m not saying that there is a cure. But given that each of us with ME/CFS presents with different symptoms, we shouldn’t be taking the diagnosis, going home and giving up hope. A GOOD medical professional will dig deeper, break down ALL of your symptoms including family history. ME/CFS is a multi-system disorder, meaning multiple systems need to be treated together in order for any improvement. Since my diagnosis I’ve been on the hunt for a better answer. I don’t doubt that I have ME/CFS, but it’s an umbrella diagnosis. I want to know the specifics. I want to treat the specifics.

Lactic acid bacteria in the gut has a correlation with mood. Also, people with ME/CFS have been shown to have low e.coli in their poop. A lot of this kind of went over my head a bit, but what I got from it was we should be having a gut profile done to understand how our system is working. Also, if you have IBS type symptoms and anxiety/mood disorder type symptoms – they could be related. Oh and antibiotics can help with your sleep.

Something about our cells and blood. Ooh and killer cells. They do something and they’re different in everyone. It all made sense during the talk, but my non-science brain is not able to retain and translate it very well.
Note to self: Don’t ever attempt to be a science teacher.

We should read our superannuation statements. Make note of what the payouts and insurance are. Could be important.

I know this is a topic often raised in various chronic illness groups…turns out that no, we are NOT legally obliged to tell current or prospective employers that we have an illness. Unless the illness could be an OH&S issue, it’s nobody’s business if we’re sick or not. When filling in the superannuation insurance forms, we won’t be asked about these particular conditions. Only if you’re applying for income protection privately will you be asked about ME/CFS.

Ehlers-Danlos Syndrome and POTS could be related! I was starting to think I had 5-6 chronic illnesses, but as it turns out it could all be related! EDS involves elasticity and POTS involves lack of blood flow to the brain. So…if your veins are stretchy then the blood isn’t pushed back up to your brain as efficiently as if your veins aren’t stretchy and actually did their job properly.

Anyway…that’s what I learnt. It probably hasn’t translated quite so well here, but I really did get a lot out of today.