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!