Assessment & understanding

Nearly 11 years after my symptoms started and 1 year after a diagnosis, today I finally had my psychological and physiological assessment for the Austin Health Adult Chronic Fatigue Program. 

It's been quite a wait to get my assessment, but I finally got there. It basically consisted of 1.5hours of questioning. Most would think that to be a long time to spend talking about your health, but for me...it was nothing. I could have spent double that time going through the seemingly endless list of symptoms. 

Whilst I have been through the list hundreds of times, talking to hundreds of doctors and specialists, today was the first time I felt understood. So many times I have either felt like I was talking to a brick wall or that I was overwhelming the person/people I was talking to. I don't question the understanding of my friends or family, but there is only so much they can actually understand. 

Today, I knew that the people at the assessment truly understood me. 

Nearly everyone tells me that I am obviously 'coping' given the number of activities I do alongside work and attempting to co-run a household.

Today, despite the word 'coping' being used, I was talking to people who knew how tiring and difficult 'coping' actually is for me.

Yes, my life is filled to the brim with work, activities, study, friends and family. So of course it would appear that I'm coping because I'm in bed all day. I don't blame people for thinking I'm healthy enough or coping based on that fact. But the truth is, I'm not coping as well as people may think. Each and every day I remain conscious of everything I do and the subsequent symptoms that go with each action. 

For me, life feels like swimming against the tide during a storm. I'm pushing forward as hard as I can, but one slip and I risk getting washed further out from the shore. And by 'slip' it could be something as trivial as not getting the dishes done or only half a load of washing getting put on because of miscommunication on my behalf. Then, with each slip there comes a flood of tears, guilt, hopelessness and stronger symptoms.

So today, for the first time, I was surrounded by people who understood all of this and as a result I was able to get a step closer to figure it out myself. 

Given that, I am hoping that once I start the program in May (hopefully) I'll personally understand myself a lot more and in turn be able to explain it to others. So stay tuned for more of my ramblings...

Stubbornness: A much loved family trait

Stubbornness. It's a trait that has definitely carried through our family and one that I can thank for getting me to where I am now.

Yesterday I had my third session with my counsellor. For the bulk of the session she had me talking about my family background including my parents' childhoods. It was then that I realised I have a stubborn and determined gene running through my family. 

EXHIBIT A: In recent months my grandpa has been quite sick (he is 90 so he's doing well). But each time he takes a turn and things are looking bad, a day or 2 later he's fine again. By "fine" I don't mean all better...but as good as he'll get I suppose. Essentially he's not ready to go. Whilst he's physically weakened, he still holds enough strength to push through and keep going. 

EXHIBIT B: Since high school (sorry Mum if that's wrong), my mother has had chronic back pain after an accident in PE class. Over time the disks in her lower back have ground away leaving her in constant pain. I think(?) it stems back to her accident at school meaning she's spent the most part of her life in some sort of pain. Despite this pain she's run a household, worked in a job that requires a fair amount of lifting, played sport and travelled. Even when she's in obvious pain, she keeps going. 

EXHIBIT C: Me. 
I've never been one to take any notice of pain. When I was 8 I broke my elbow and simply said "my arm hurts". When I was about 10-11 my kneecap was broken. It wasn't until I'd spent a year dancing and running around on it that I even found out it was broken. A few years ago I broke my big toe whilst on stage. They always say that "the show must go on" so I gave it no thought and continued on with the show. There was no way a broken toe was going to stop me from performing!

I can now see that it's this stubborn determination that has gotten me though the past 10 years of my illness. Without it I could very well be bedridden right now. I refuse to let this illness take me. Yes, I do have limitations and can't live my life to the extent I'd have liked - but where I have the power, I take control.

I will use every last drop of my limited energy to see through each day and I hope that I can follow in the footsteps of my mum and grandpa and retain that stubborness that gets them through life.

The 'Maybe-I-have-that-too' Syndrome

The 'Maybe-I-have-that-too' Syndrome is highly contagious and most often caught by those in contact with chronically ill people. Research suggests that the chronically ill act as a carrier for this disease and inadvertently infect the healthy upon talking about their illnesses.

Symptoms include:

• Dismissive behaviour towards the chronically ill
• Loss of hearing when ill people are speaking
• Associative tendencies particularly in relation to another person's symptoms
• Increased levels of arrogance

Sadly, I come across people with this syndrome on a regular basis. Judging by the frequency I meet people with this disease I would say I'm a carrier, causing those around me to fall victim to it. Just last night I somehow manged to infect 80% of a dinner party I was at. As a result my own symptoms flared up, causing me to miss another party I was due to attend. 

It's a dangerous disease. I can only hope that one day we will find a cure to aid these struggling sufferers.

Narcoleptic learnings

These past few weeks have been horrible to say the least. I should be buying shares in Kleenex with all the tissues I’ve gone through with my constant crying! The final weeks to the end of the year are never easy for anybody. We all get tired and stressed, hanging out for our much needed break. This year I seem to be copping it twice as bad as normal. It’s been a long, hard year and I just want it finished with. It’s all making me more exhausted than normal, but considering my standard state is exhausted, you can imagine how I feel now!

In feeling as down as I have been I decided to do some more research into narcolepsy. Oddly enough, it’s actually made me feel better. When faced with a difficult illness whether it be physical or mental, we can often think and feel that we’re alone. Whist I have the most understanding family and partner, I have been feeling lost and alone – not even fully understanding the illness myself. So today I went on the search of information from medical organisations and fellow sufferers. As a newly diagnosed narcoleptic, I discovered that I knew surprisingly little about the illness I’ve carried with me for over 1/3 of my life. 

For starters, I wasn’t aware that as a narcoleptic I am actually missing cells in my brain *cue the dumb jokes*. In “normal” people, there are 70,000 cells in the hypothalamus area of the brain containing the chemical hypocretin (aka orexin). For those of us with narcolepsy, it is between 3,000 and 10,000. Autopsies of people who had narcolepsy have shown scar tissue in the areas of the hypothalamus where hypocretin brain cells used to be. So essentially this means we’re all born with these cells, but for some reason they’ve later died. 

Another thing I learnt in my Googling was an interesting statement which would help me to explain to people just how tired I feel. It’s been said that the average person would have to stay awake for 48-72 hours before they would feel the strong call to sleep that I feel daily. There’s been times where I’ve had to go to the toilets at work so I can close my eyes and attempt to recharge because I just cannot physically keep my eyes open any longer. 

When I don’t have the luxury to sleep in order to recharge, I instead turn to food. When your body is running low on fuel, it will naturally crave energy rich foods. This in turn leads me to tears as I suddenly fail to be able to do up my size 10 pants at 6am this morning. I’m now faced with attempting to cut back on what I eat as well as find the energy to take the dog for a walk. Not easy. 

Thankfully, however, my sleep specialist has increased the dosage of my medication. So as of tomorrow I’ll hopefully start to gain a bit more energy to keep me awake during the day. This isn’t to say I’ll be able to party until 4am, but I will be less inclined to need to nap multiple times a day. 

Hopefully this new research will help me feel less useless, guilty and lazy. It won’t be easy to change my own thoughts and feelings, but I can but try…

Mental Health

With any long-term/chronic illness there are the obvious physical symptoms and the hidden psychological symptoms. My illnesses are no exception. Ten years of being sick definitely takes a toll on you mentally. 

In late 2009 I was sent to see someone – can’t remember her actual title but she was a shrink of sorts. My GP at the time was well aware of my family medical history and thought I should go see this woman to work out essentially what sort of depression I had. Going in to session #1 I was a bit nervous but generally ok. Basically all we did was discuss my background in no more detail than what would appear on my resume. Session #2 I was less nervous so I smiled at her when she called me in. We finished off my “resume” and she said that I was fine and sent me on my way. 

For starters…I was not fine. In the space of 2 weeks I’d returned home from 6.5 months overseas, whilst still jet lagged I was dumped and told I had no job, my nan passed away and I was rapidly losing my friends. But I wasn’t asked about any of this by the shrink. It was touched on briefly but I wasn’t asked the classic “how does that make you feel?”. 

Needless to say – this put me off shrinks! Bugger these “professionals” – I was going to do it alone!

So, 4 years on and still sick, I’ve continued to avoid professional psychological help.  That is, until now. 

Triggered by another problem which I won’t go into, my partner and I signed up for a mental health first aid course (https://www.mhfa.com.au/cms/). In doing the course I’ve come to notice my own mental health problems which have come about mostly from being physically ill. So this, along with my seemingly endless tears over the smallest things, has led me to going to my new GP for a referral to a shrink. I did a mental health plan a few months ago, but chickened out due to my previous experience and went on to lose the referral I’d been given. 

But now, finally, I’m booked in. In 2 weeks I have my first session. 

I know that the first step to overcoming a mental illness is recognising there is a problem and seeking help, but I still can’t help but feel like I’ve failed and that I’m not as strong as everyone else.  For this – I blame society and the media. 

There is too much of a bad stigma around mental health which is ridiculous considering how common it is. I’m going to try and help break that stigma by talking about my own mental health journey. I would also recommend doing a mental health first aid course. You’ll not only learn how to help others, but you will also pick up a few tips for yourself.  

This is my ramble for now. Until next time…look after yourselves!

Misdiagnosis: What are we doing to our bodies?

For years I have been baffled at the number of kids who have been diagnosed with ADD or ADHD. When I was at school I think there was one kid in the year level who had it. Anyone else who played up in class was just deemed to be a "brat". Some were known to have troubled homes, some were the youngest child, some just weren't as mature as the rest of the class yet. These days, however, there seems to be a handful of kids in every class with ADD or ADHD and are on medication for it.

Now I don't question that some people would have one of these disorders, but I do question how many are seemingly easily marked with the disorder, handed a prescription for Ritalin or the like and sent on their way.

Finally, this has been noticed by the medical community. An article today warned of possible misdiagnosis of the disorder. I don't blame the doctors for this, I blame the health care systems. These days it's hard to be with a GP long enough for them to get to know you and your family to be able to perform a proper diagnosis. Barely getting 5-10 min with a doctor virtually guarantees you won't get a full and thorough diagnosis. Yes, you can book a double appointment, but not everyone can afford to be out of pocket $120 just so they can get properly looked at. 

ADD/ADHD isn't the only thing that is getting wrongly diagnosed. For at least 10 years of my life I've been getting wrongly diagnosed. In fact it took a couple of years before anyone picked up that I didn't just have a flu at the start of 2003, I actually had Cytomegalovirus (CMV) which for some people it can just appear as a flu-like virus, but it can actually become more severe and it a virus that remains in your system for life.

Since 2003 I've been rushed into a diagnosis of depression, glandular fever, flu and most recently a dismissive diagnosis of chronic fatigue syndrome. 

Anyone who knows me is aware of how sick I am and that when I get sick I don't do a half-arsed job at it, so I don't expect doctors to be able to correctly diagnose me right away. What I do expect is a health care system that allows  me and everyone else out there to get adequate time with a GP who's been given the time to learn more about some of the less common diseases. And a system that doesn't leave me unable to get adequate treatment simply because I cannot afford all the medications, specialists and treatments I need to get better. 

Too many of us are sick. Too many of us are wrongly diagnosed. Too many of us are unable to afford appropriate treatments. I don't know much about the economy or how things work, but I do know that something needs to be done.  In a way I'm lucky with my previous diagnoses in that for the most part I haven't been incorrectly medicated. But in the case of these poor kids who just need a bit more time, patience and assistance - their wrong diagnosis of ADD/ADHD and subsequent dosages of medication could actually be causing them even more harm.

I baked cookies!

Last Friday I got a letter in the mail containing a prescription for Modavigil. At the time I was excited...finally my narcolepsy was here! Modavigil is essentially a stimulant to help "improve wakefulness in people with excessive daytime sleepiness associated with the medical condition known as narcolepsy" (http://www.mydr.com.au/medicines/cmis/modavigil-tablets). Because it is used to help keep me awake, obviously I can only take it in the mornings. So, I had to wait until Saturday to take them. 

Friday night I got home at about 12.30am, went to bed about 45min later and had to get up at 7.30am on Saturday. Obviously I just wanted to go back to sleep, but I had to get the youngest to cricket. Then I had an unexpected thought running through my head...I didn't want to take the tablet today, I wanted to be able to come back from cricket and go back to bed. I wanted to be able to nap. 

After 10 years of being ill, napping had become my comfort and part of who I was. I was suddenly scared of letting that go. 

10 years is a long time..and this 10 years occurred during my "who am I" period (age 18-28). Without being tired, I don't know who I am. I have memories of having energy: having dance classes every day of the week for shows, staying up past 8.30pm to watch TV, baking cookies every weekend...all things I haven't been able to cope with for a really long time without facing consequences the next day. 

Anyway, I finally talked myself into taking my first 1/2 tablet. After lunch I still had my planned nap because I was sleep deprived from a few late nights. The thing that surprised me was when I woke up, I was still a little sleepy, but I didn't feel exhausted and ill with no drive to get up (feelings I face after every nap). I got up and I baked cookies! 

This may seem like a small thing, but for me, this is huge! I loved baking as a kid, but I'd gotten so sick that it had become a chore to even get the ingredients out of the cupboard. 

So generally at this early stage of the medication and starting out on just a 1/2 tablet, I'm noticing some changes and it makes me happy. I'm still sleepy, but the fog and fatigue have lifted. My brain actually feels like it's awake for the first time in a long time. Whilst I knew my inability to do much was because of the narcolepsy, I still had this fear I was lazy. But right now I'm happily getting my work done and although home time is still a while away, I'm not upset at the thought of having to do housework when I do get home. 


I'm not saying I'm now 100% better - I still have a while to go - but for once I have hope and a regained strength to push through and fight once more.