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.