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Wednesday, 16 April 2014

Rocking My Face-Triangle

"You're in pretty good shape
for the shape you are in."
Dr. Seuss

I was supposed to cover this in my last blog entry, but I kind of ended up writing more than I planned to and I felt like it was a little much including this too.

As I've mentioned before, I have Sleep Apnoea and therefore use a ventilator at night called a BiPAP. It stands for Bilevel Positive Airway Pressure. Basically when I was twelve, I was tired a lot. To the point I was almost passing out in class. My mum noticed I seemed to be having a pause in my breathing while I was asleep. She really does notice everything! I remember waking up during the night and looking over my shoulder to find my mum and a man I'd never met before watching me sleep. Turned out he was an on call doctor she'd got to come and see what she'd noticed. To be honest, apart from the fact I was very tired and such, I didn't notice anything. Eventually I was taken into hospital and they did sleep studies etc, and at first tried me on a CPAP. It didn't work for me, and they then put me on a BiPAP and I've used one ever since. This year I'll have needed it as many years as I didn't need it. Gosh, the years have flown in.

I only require it at night when I'm sleeping, or when I'm lying down. I used to also need it in the car for long journeys, but I don't now that I sit in my wheelchair in the car, most of the time. I would also need it if I were to fly in a plane. We learned that the hard way, and I haven't flown since. I don't think I've slept without it since, apart from maybe a one or two short naps with my ex. I never remember feeling like I needed it when I was lying down before I started using it, but I guess maybe my chest muscles have wasted since I started using it and that's why I rely more on it now when I lie down. Sometimes I can lay for a while without it if I don't think about it too much. Though most of the time it's just more comfortable and less effort to wear it.

I have to say out of everything related to my disability, I probably get people asking me about things to do with having Sleep Apnoea or using a BiPAP most. I get a lot of people who maybe have just started out wearing one asking me how I coped and such. Or asking if I have any advice on which masks are best etc. I also get a lot of people who say they don't ever think they'll get used to it, or that it must have been easier for me because I was so young.

When it comes to coping with it all, my answer is always the same and what I say about most things in life. Acceptance goes a long way. Which I'd never say is easy by any means, and it definitely takes practice. But I think like anything, once you stop fighting it or hating it, things get easier. What's more, you need to look at the positives of how it's helping you. I mean I could be annoyed I have to have a mask strapped to my face, look highly unattractive, leaves my face with red marks or I could look at the positives. I don't wake up with blinding headaches, I can actually stay awake during the day and oh yeah.. I keep breathing through the night!  I know this is the kind of advice that most people would reply 'it's easy for you to say' or 'easier said than done' to. It might seem like it's easy for me to say twelve years later that you just need to persevere, but the reality is, at least for someone like me... there's not really any other choice. So you have to make the best out of a less than ideal situation. Adapting to something new is never easy, but it's amazing what you can get used to when you believe that you can.

When it comes to masks and comfort, it's never going to be perfect. There have been pros and cons to all the masks I've worn. I couldn't even name all the masks I've tried. Everything from over the nose, to over the nose and mouth, to... this bad boy.

It reminds me of the masks from Avatar.

Admittedly that one, I wasn't open to getting used to. My first thought was... I can NEVER wear this in front of a guy. I guess there's an acceptable mask line for wearing in front of the opposite sex, and for me that mask crossed it. Luckily my cheek bones felt like daggers trying to pierce through my skin when I wore it, so I couldn't stick it a whole night. It almost bruised my cheeks. My face isn't very fleshy. I was trying it because the mask I'd been using had been cutting into my nose, so I didn't see the point in swapping for a mask I liked less, that just cut into another part of my face instead. Anyway, basically you have to find the mask that is the least uncomfortable. And what's comfortable for me or anyone else won't necessarily be comfortable for another person. The mask I use now is the FlexiFit 431 in small. I have to say, it is the best mask I've ever used. I mean, that's not to say I don't have a list of cons to go along with the pros, but at it's best, it is the best I've had. This is it:

Another thing is, just because you've had a good experience in the past with a certain mask, doesn't mean one day it won't decide that it hates you. And that is actually what gave me the inspiration for this entry. I've always had some face marking with this mask, but usually they faded after I'd have the mask off for a while. Or they were at least easily covered with make up. Sometimes where the mask would sit would get a little dry, but it was nothing major. Then a few days ago I woke up like this:

Excuse the fact I look so sad... 
I was trying to not make my face crease so you can properly see the marks. 

The marks don't actually look as bad in that photo because of the lighting, but they were actually more red. The skin is very dry and coarse. And it felt tight, especially after it gets wet. I tried putting cream on it, and the next day it was worse and it was peeling like sun burn! Highly unattractive. Another problem is the fact the skin doesn't get a break. It would probably clear up faster if I didn't have to wear the mask every night. After this photo it actually spread more to under my chin as well. So I basically have a big red, dry, flakey triangle on my face. And all from a mask I usually would praise to no end! Now, that being said... I had washed my mask in something new, started using new moisturiser on my face and I've also been wearing make up more than usual and I guess therefore washing my face a little more thoroughly than usual. So while it's obviously where the mask is against my face, it could be a combination of things that has made this happen. I generally have very sensitive skin anyway, and the skin where my mask sits is probably even more fragile. 

Usually I wouldn't care too much, I'd just take care of it as much as possible and wait for it to go away. I'm used to this kind of stuff, because like I said I have very sensitive skin anyway. It's one of the reasons I self diagnosed the fact I have one of the collagen deficient Muscular Dystrophies (to be confirmed by a doctor though, obvs). But it's a lot more annoying when so obvious and right on my face! Still, that wouldn't bother me so much if it wasn't for the fact it's my birthday this week, so I can't avoid going out in public unless I don't go out for my birthday. And I was looking forward to that. So fingers crossed it's eased my the weekend. I can't cover it with make up like I usually would because it's so dry, plus I'm afraid it might make it worse and just prolong it. So yeah, fingers crossed!

Anyway, the moral of the story is... things will never be perfect, but they'll always definitely be something. That makes sense, right? 

PS: Another positive aspect of wearing a ventilator at night, your cat is a lot less likely to suffocate you in your sleep. Pretty sure mine would have by now, to be honest. ...Accidentally, of course. 


  1. Very descriptive post, Sara. It was interesting to learn about a BiPAP. I wish you a happy (early) birthday.



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