Sleep Studies and Lung Functions: A pinch of realness

G’day my friends and welcome to another week and another blog!

If you saw on my socials this week, I spent the night in hospital. Yep I had to go in and spend the night for a sleep study test!

For those fortunate humans that haven’t had a sleep study test done, it is where you are hooked up to all these different electrodes that measure how much oxygen you get in when you sleep, how much your lungs expand, heart rate, any restless leg symptoms, eye movements, if you grind your teeth and brain activity.

Safe to say there is a lot they look for which means plenty of wires.

The last time I had a sleep study done was a good 10 or so years ago, and I was hoping I could have escaped needing one done again, but unfortunately that wasn’t the case this week.

So I thought I will delve into a little more about why I needed this study done, my experience and how I feel about this less glamorous side of disability life.

Why did I need a Sleep Study test done??

a print that was in my room .it is a glass print of a beautiful sandy beach. The photo is looking across the beach with palm trees and sand on one half and blue ocean on the other half of the print
Just had to show you guys the picture that was in my room!

About a month or so ago, I had my first lung function test done in over 5 years.. The reason for the long wait is because the transition to the paediatric to the adult system is a little tricky, especially finding specialists that have experience with MD. Also the fact that it is super easy to drop out of the system through no fault of your own is also a reason for the long time between tests.

However, The results showed that my lung function is now at 40%. A reduction of 3% in the last five years.. My scoliosis, mixed with my MD has also contributed to weaker muscles around the lungs. Super fun I know!

During my appointment with the respiratory specialist, she said she was concerned about how my diaphragm and lungs go during sleep, so ordered has ordered a sleep study as well as an arterial blood gas test (blood test through the artery in the wrist instead of a vein) to determine how my lungs cope during the evening.

Yep you read that right, a blood test done through your artery… wish me luck!!

Anyway, off I went this week to go and get the sleep study test done!


a close up photo of all the wires attached to me during the sleep study. I have two blue wires on my forehead, a red one on my jaw, and a long piece of white tape holding two nose pieces in place so they could monitor how much air i was inhaling. and all is attached to a machine that is tucked in a bib like thing that is half out of shot.
how is that for a close-up!?

I had the choice between going to the hospital and getting hooked up to the machines and then coming home to sleep or staying in the hospital for the night.

Due to the risk of electrodes coming off during the night and not being able to fix it if I was at home and then having to re-do it, I decided to hang out at the hospital for the night.

I had to get there at 6:30pm and was hooked up to everything in what I must say is a rather attractive bib by 8pm. The technician was amazing, super kind and made me feel right at ease.

The orderly came in soon after to offer snacks or a drink (non-alcoholic, I am afraid), and he was perhaps the kindest orderly I have ever met! Bedside manner was top-tier, in my opinion! speaking of which, I wrote about my past experiences with bedside manner last week, which you can check out here!

However, the idea of a sleep study is to sleep! Safe to say, I barely got any of that done! Believe it or not, sleeping covered in wires and a big pack strapped to your chest isn’t the most comfortable.. I reckon I got about 4 hours of sleep if I am lucky! It is so true what everyone says; you can’t sleep in the hospital.

I got woken up at 5 am to have all the leads removed and breakfast served at 6:30 am, and then I was back in the car heading home at 6:50 am. I was so eager to get home and scrub all the wax out of my hair that they used to keep some electrodes in place to monitor brain activity. It wasn’t the easiest thing to get out but thankfully, mum was on hand to help give my hair a good scrub!

Lung function: Let’s be real for a second.

a picture I took coming home at 6:50am the next morning. The sky is partly cloudy with a small bit of sun peaking through the clouds.
home time at 6:50am

Remember when I said earlier in the blog post that the specialist was concerned about how much oxygen I got in my sleep hence the sleep study?

Well this concern started a conversation about potentially needing to use a Bi-Pap machine to be worn during the evening to better support the lungs, depending on the results.

For those who don’t know, a Bi-Pap machine pushes air into your lungs, expanding them (precisely like breathing normally) and allowing your body to get more oxygen.

The specialist also reconfirmed the importance to be safe from illnesses that impact the lungs and, as such prescribed me incredibly strong antibiotics that will have crazy side effects to keep on hand should I need them.

The sheer mention of potentially needing a bi-pap machine, or any machine to support my lungs is absolutely terrifying. I felt myself start to disassociate in the waiting room while my sleep study was booked. I didn’t want to acknowledge that the timeline I had thought my condition would progress was not happening.

I have had a habit of not processing my emotions and saying out loud exactly how I feel, however the past few months has really made me see how bad that is. So I waited till I got to the car and I got angry, and then when I got home I sat on the floor with the fury members of the family and broke down in tears.

I then said out loud to my mother that I am terrified. Terrified of the thought of potentially needing a machine, being told I am not doing as good as I thought, and absolutely afraid of my lungs deciding to give out and me leaving this earth that way. I have never been entirely open with voicing my concerns about how my condition will go in the end stages until now.

It has made me completely reevaluate my life thus far and what I want going forward. I know it is crazy to some that nothing has much changed as of right now and that I am ‘freaking out and getting emotional’ over this.

But I just wanted to put it out there, that unfortunately appointments and sleep studies like this makes you stare your disability head on and realise it has a way to get the upper hand when you aren’t expecting.

I know what you are thinking, 40% is bad but it isn’t that bad compared to others, why were you so worked up? I think whenever anyone gets any news that may not be favourable you freak out a little. And that is okay.

I allowed myself after that appointment and even waiting to get hooked up to everything the other night, to actually feel my feelings. Its so easy to bottle it up and shut down and not share what you are feeling. Working with horses has taught me the importance of really working through your feelings, and being okay to need a moment.

This is not me saying, “I hate my disability” and having people say “Oh, you wish you were normal; that is ableism”. Believe me; there are people out there who have things against fellow disabled humans who seek treatment or cures for their conditions.

I am simply saying that you are allowed to be frustrated at your circumstances, and you are allowed to be angry and even if I may, shit scared, of what can happen next.

However, it is so important to take each day as it comes, and acknowledge truthfully what is going on and then be proactive on how you are going to look at it. Mindset is everything.

I may have been and will continue to be terrified at times, but you have to push through the fear and do things, like a sleep study and an artery blood test, that scare the living hell out of you! If I end up having to go on a bi-pap then that is what will be. However, the nurses, technicians, doctors and those closest to you always makes things more bearable!

Till next week!


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