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.

The next chapter: Narcolepsy cont...

I haven't written in a while - purely because not a lot of progress/change/developments have taken place over this past month. But I am now another step closer to the next stage of treatment. I've just returned from an appointment with my sleep specialist. Since I last saw her I had to have an echo and a series of blood tests to check my general organ health before she would consider putting me on medication. Thankfully all tests were clear so as far as she's concerned...I'm good to go. 

The next step is applying for the medication. To take Modavigil, my sleep specialist needs to send the PBS my file so that they can approve my taking of the medication. I've obviously never had medication that required such a process to take it so I was worried that it would mean a lot of expenses to get the drugs I need. BUT...according to the PBS website, I won't be paying any more than my other medications anyway. PHEW!

Within about 2-3 weeks I should have these new drugs in my hands. Apparently I get to look forward to a period of nausea and headaches with possible heightened anxiety (FUN). Thankfully my latest production, RENT (book tickets), will be done and dusted by that time so I should be able to get myself through the early side-effects. But please, bear with me during that time. It will take a few months before I can work out the right dosage, but hopefully it will get me back on track. 

So until I get those meds...sleep well my lovelies.

Unconventionally Disabled

http://suzyq03.tumblr.com/post/59380750485/unconventionally-disabled

Disability comes in many forms. Stereotypically it comes in the form of an evident physical or mental feature that differs from the norm. However, in amongst the so-called ‘normal’ people, hide silent sufferers of invisible illnesses unsure of whether to label themselves as having disabilities.

I have been ill for ten years-nearly a third of my life. As a general concept I wouldn’t consider myself to have a disability. I’m just unwell. But is that how people with a labelled disability also see themselves? Not disabled-just unwell.

A question was asked today by another sufferer of a similar invisible illness to mine as to whether we should be considered to be disabled based on our limited capabilities. My first thought was ‘No, I’m not disabled’. But then I thought about it a moment longer and then I wasn’t so sure.

I don’t always stand up for someone older than me on public transport purely because I know I would risk collapsing if made to stand for too long. I am aware of some of the looks I get because I’m a young, fit looking person, but I feel entitled to sit based on my condition.

So does me having a reason to stay seated mean I’m disabled? And how to I explain myself so as not to be judged. Or should I not have to explain myself?

Narcolepsy

Long time, no blog. I've been waiting for various test results to come back and I've also been sick (seriously, who gets an inflamed pancreas out of a common cold!?). 

Anyway, today I got the results from the sleep studies I did a few weeks ago. Turns out there's a high chance that I have mild narcolepsy. The first thing that popped into my head when I heard that was Rowan Atkinson's character in Rat Race (anyone remember that movie?). Here's a photo so you can get that same image in your mind...

Obviously I don't have severe narcolepsy - we'd have all known about it years ago if I did. Unlike in these cases of severe narcolepsy, I can control when I fall asleep. Essentially my problem is that I want and often need to sleep more than the average person. 

So how did I get to this diagnosis?
According to the night time sleep study, I slept for a solid 10 hours (which is a relatively long time). After this 10 hour sleep, I was able to fall asleep in all 4 naps that I had to have during the day. Whilst it is common for people to be able to nap during the day, the abnormal part was how quickly and how long I was able to nap for and still nap again 1.5 hours later. Normally it should take beyond 10 minutes, closer to 20 minutes to fall asleep when you're forced to nap. In all 4 instances, it took me less than 5 minutes. Key indicator that I have narcolepsy!

I now have to go have another 2 tests done. First is an echo to check my heart and second is a blood test to see if I have the gene that typically holds the final confirmation of narcolepsy. The blood test tends to be positive for 95% of people with narcolepsy. However, it also shows up for 20% of people who don't have narcolepsy. The echo needs to be done before I can go on the medication to help me stay awake during the day. 

Fun times ahead!

Sleep Study: Part 2

*This was actually written during the sleep study, but have only just now gotten around to and been able to post it*

Sleep studies are annoying. Whilst the idea of getting to sleep all day is awesome, the reality isn’t so fun. For starters, at around 8pm I was fitted with wires on my face, head, chest and legs. All these wires were connected to a central box, plugged into the wall. The wires on my legs were to check for restless leg syndrome. The wires on my face and head were to monitor my brain waves, eye movements and any teeth grinding. 

Then the tubes and straps were added: the tubes stuck up my nose and around my face, while the straps were secured around my chest and stomach. This was to measure my breathing and to make sure I didn’t stop breathing in my sleep (a sign of sleep apnea). 

With around 15-20 wires and tubes and straps secured to me, I was then left to go to sleep. Do you have any idea how hard it is to fall asleep and stay asleep with that many wires attached to you? I’m generally a restless sleeper – constantly tossing and turning. So every time I wanted to roll over, I had to rearrange the wires so I wouldn’t choke myself. This led to an even more disturbed sleep than normal. The upside was I was left to “sleep” until 8am. Considering the fact I generally have to get up at 5.30am, this was a much enjoyed sleep-in. 

Having been allowed to sleep longer than I would normally get to, being told at 9.30am that I would now have to have a nap, was surprisingly stressful. Pressure was on to fall asleep! I fell asleep eventually, only to be woken up a few minutes later. This process was to be repeated 3 more times throughout the day. As I’m typing this, I’m about 35min away from my 4^th nap of the day. So far I’ve fallen asleep in 2 of the 3 naps. 

Spending an entire day with wires attached to my face hasn’t been entirely pleasant. I am so itchy! And I know I’m going to have to leave here and catch public transport home with big, red splodges on my face. Also, being woken up just as you’ve fallen asleep…ANNOYING! Oh and there’s no wi-fi or power points. So my phone is just about dead and could have left my computer at home.

Sleep Study: Part 1

Ok, so my latest round of specialists and appointments revolves around sleep. Yesterday I had my initial consult with a sleep specialist at the Epworth Sleep Centre in East Melbourne. Whilst she doesn't think I have sleep apnea or narcolepsy, she still wants me to do a 20 hour sleep study. 

So, on Monday night I will go in at 7pm so they can start wiring me up. I'll have wires attached to my head, around my face, on my chest and on my legs. I will also have a bandage around my chest and sensors around my nose and mouth. The purpose of these wires is to measure my brain waves and track movements in my body. The bandage and sensors are to measure my breathing. I will then go to bed at my normal time and nurses in a central control room will monitor the data and watch me sleep until 6am when I will be woken up again. That is the first study. 

The second study will be held during the day. They'll remove some of the wires and monitor how I am during the day whilst just sitting and reading etc and also whilst napping. Across the course of the day I'll be taken to have 4 x 30min naps. I must say, I'm a little bit excited about a day of reading and napping! Finally, at about 4.30pm I will be sent home. It won't be until a few weeks later that I will find out if I do have a sleeping disorder.

All of this is fine. The problem I face right now is they've asked me to come off my anti-depressants. I've been taking the lowest possible dose and I'm not convinced that I have depression (it was diagnosed after about 3 years of me going to the GP every few months, complaining of being tired) so I happily agreed to come off them. Unfortunately, there are side-effects from not taking them that I have to now deal with. So far, these side-effects consist of light-headedness and fatigue (more so than normal). 

So right now I can feel the tingling in my fingers and head and I am struggling to keep my eyes open. I'm curious to see how I fare at rehearsal tonight...

Diet fail

From my last session with my naturopath/hypnotherapist, I was told I still had to stay on the Paleo Diet with the exception of fructose, potato and rice. I'd already been cheating on the fructose, so that was no different. I've since enjoyed a few chips and rice foods as well. But my problem wasn't with trying to stay off rice and potato...my problem lay with the lack of coffee and chocolate. 

Finally, yesterday I hit that time when every girl wants needs chocolate. My brother was also whistling Christmas carols...so I snapped. I ate 5-6 dark chocolate chips. The release of stress was amazing. For most of my life I've had to adjust to not being able to eat gluten and not being able to do things because of my CFS. I was tired of being a prisoner to my illnesses. I didn't want to lose my favourite food and drink to it all as well. So this morning I marched into the coffee shop and I ordered a real coffee. None of this decaf shit! It relieved the annoyance of my morning and made me so much more happier. 

So, I've decided - no more than 1 coffee a day. And if I have a coffee, then I don't have chocolate. If I have chocolate, then I don't have coffee. It's a comprimise I've made with myself that I'm content with. The naturopath will probably be disappointed, but it's a decision I had to make. I was just getting too depressed.

Hypermobility

Today I had my second appointment/assessment at the Austin CFS Clinic. I walked in with Chronic Fatigue Syndrome and walked out with possibly actually having a hypermobility syndrome.

The Dr I saw today asked me to bend and stretch various body parts and based on that assessment I'm considered to have hypermobility.

Being a dancer since I was 5, it never occurred to me that my flexibility was anything other than years of training. Although now that I think about it, even with large breaks in my dancing, I've never really lost my flexibility.

So now I'm starting a new round of research into various hypermobility syndromes like Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.

According to hypermobility.org, "severe fatigue can also become an issue, and is often driven by the chronic pain and poor sleep patterns. This may be confused with the condition Chronic Fatigue Syndrome."

So there you have it. My 'natural' flexibility, childhood scoliosis and chronic fatigue might all be due to a hypermobility syndrome.

Road to recovery

Not to get too ahead of myself, but in the past few weeks I've noticed a slight change in my health. The main change is the lessened crash after lunch. Don't get me wrong, I'm still tired, but lately it's been just that - tired - and not the painful tired I've been experiencing the past 5 or so months. I've even been able to stay up past 9pm without going into a panic and wanting to cry.

My energy levels still aren't high (so no marathons for me just yet), but at least the pain has eased. I've even managed to get through the weekend (just) without having naps. Usually I'd get to about 2pm on the weekends and need to go lie down. But, in the past weekend, I managed to get through without. I struggled from about 5pm onwards, but even then I was still able to function. 

I think it just goes to show that perseverance pays off. Whilst the advice from some was to simply slow down and listen to my body, I kept on fighting. Mostly out of fear of not being able to get up out of bed again, but I fought none-the-less. 

I'm not saying I'm cured, but even feeling this little bit better is a massive milestone. I'm still going to keep up my treatments and sourcing more information and options, but for now I think I've found something that works for me.

For now, I say a big thank-you to those who've helped me through the past few months whilst I've been at my worst. Especially my family, boyfriend and closest friends. Too often I read posts from fellow CFS sufferers who've lost the support of loved ones. I've been lucky in being surrounded by love, support and desire to understand me. So thank-you.

Hypnotherapy, meditation & detox

Today marks the 10th day of the detox diet. I can't say I'm enjoying it or seeing any changes. I've barely even lost a kg! I know it's not about losing weight, but I'm going to have to suffer for 2 weeks, I would have at least liked to have seen a shift in weight. Might motivate me a bit more to get through to the end of the fortnight. It all just makes me angry and I can't even turn to any of my vices to calm me down. It hasn't helped that this past week I've been tasked with mind numbing work to do so all day my brain is just calling out for something to keep it happy - be it coffee or chocolate. 

It won't be until Monday night that I will find out what I can start eating again. By the time my appointment is over, all cafes will be closed so even if I am allowed coffee again, I won't get to enjoy one until Tuesday! 

Monday night will be hypnotherapy session #2. I must say, I was a little disappointed in discovering the truth about hypnosis. I'm not sure where the movies and TV shows got their idea of hypnotism, but it's not like that at all! Really, all you're doing is meditating and that's just how it feels. There's no fob watch, there's no clucking like a chicken; there's just resting on a table with your eyes closed.

The purpose of the hypnosis is to speak to my sub-conscious and allow it to remember a time when I was well. This will in turn open it up to the idea of getting better again. 

I know it all sounds like hippie voodoo, but when you've been sick for 10+ years, anything is worth a shot!

The Paleo Diet

I've just returned from seeing this new naturopath I mentioned a couple of posts ago. He explained to me a lot about the workings of the brain and body and how an imbalance of electricity in your brain can impact the workings on the rest of your body. Essentially if my brain isn't in sync, then the signals it's sending to the rest of my body isn't going to be in sync. 

Another fun fact I learnt today was that 60-70% of the immune system is housed in the gut. So when your gut isn't in the right shape, neither is the rest of you. 

This brings me to the Paleo Diet. 

For 2 weeks I need to detox by taking on a diet that consists of zero starch, wheat, sugar, caffeine, alcohol, rices and various other things. So basically no coffee, chocolate, pasta, chips or wine (my favourites). 

It'll certainly be a challenge, but one I have to take on if I want to commit to getting better. 

Next week I'll have my first hypnosis session. Another challenge, but another step I have to take. 

BRING IT ON!