Life changes; saving for a rainy day

My first post here as CrystalSings, although I have posted before under a different name. I want to be more open about what I’m posting today, so I want to go by the name most people know me by.

I was recently diagnosed with obstructive sleep apnea, and started treatment for it with an auto-cpap machine earlier this month. The first night was an absolutely horrible experience. I’ve been using it for a week and a lot of the sleep apnea related symptoms I’d been having during the day seem to have improved and I think I’m starting to get used to how it feels. But I’m still having a hard time accepting that I will have to use this machine every night for the rest of my life. In my wildest dreams and nightmares and imaginings, having to use a cpap machine was something I never thought would be a part of my life. I did as much research as I could before I received the machine so that I could learn about my condition and how to treat it.

But I’m frustrated that I’m now having to rearrange my entire schedule and my life around the care and use of this machine. I know that it’s for my own good, but it’s still difficult. Every time I think about the cpap, I’m filled with some level of contempt. I feel tethered, figuratively and literally. I’ll have to take it with me if I stay anywhere overnight. I have to dedicate so much time to cleaning the parts every day and then more thoroughly once a week. I have more energy in the afternoons now, but I start feeling tired around 9pm. Which I suppose is normal, but I very much enjoy being a night owl…which I can’t do anymore. I’m going to miss staying up late, talking to my friends in other time zones. It now feels like I have fewer hours in the day to get things done, to have some time for myself. There are no more “extra hours” because I have to stick to a bedtime routine. I have to have a morning routine. I can’t falter from these things. I can’t really be lax about these things. And I’d rather just do what feels right to me, to go with the flow. I like to make schedules and stick to them, but I also feel tethered by that. I don’t want to constantly be looking at the clock, wondering if I’ve spent too much time “having fun”.

I’ve had some great days this month, mental health wise. Some really unexpected good things have happened that have kept me going. I dare to say I’ve even been happy. I’m struggling to hold onto those moments to keep me afloat. I’m trying to put those good feelings into a reserve of good things to save for a rainy day. I’ve had a taste of happiness; I don’t want the darkness of depression and anxiety to take hold of me again and drag me under.

I’m also worried about my parents’ health, as they’re both getting older. I don’t know what I’d do if I lost them. I’ve been trying to make a lot of new friends recently; I’ve been trying to “hang out” (online) in more places that feel safe, chill, supportive, and welcoming. I’m trying to build a support network while I still can.

With all the major life changes happening for me recently and all the major life changes to come, I need to save some happy things to draw strength upon for those rainy days.

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Welcome to the sleep apnea club! IDK who else on here struggles with it, but I do.

I’m sure the doctors gave you a doom and gloom speech about the importance of using it every night and keeping it sparkling clean etc etc. Real talk, you don’t have to do all that stuff. I clean my water chamber once a year or so to get the sediment buildup out, and that’s it. Your insurance should pay for new consumables pretty regularly. I get 2 new cushions and filters a month, new headgear and tubing every 3 months, and I’m eligible for a water chamber every 6 months, but usually keep it a year. Cushions last me 2-3 weeks before they get too soft to seal, and then I swap them. If the tubing starts to smell musty, clean it. Otherwise swap it when you’re eligible for it. Your medical supply company should have one rep that handles your supplies, so all is takes to get that done is a phone call. They’ll tell you what you’re eligible for, and help you with any equipment-related questions.

It sounds like you got a doom and gloom speech about a regular bedtime routine. That’s good sleep hygiene, but it’s totally independent of your sleep apnea. You will notice a change when you keep a regular schedule, but that’s a lifestyle choice. The CPAP ensures that when you do sleep, you keep breathing. It doesn’t matter when that happens.

If you crash with friends unexpectedly and don’t have your machine with you, you’ll live. You may like ass the next day, but you will be fine. If you’re planning an overnight stay, it’s just another thing you pack. It is annoying, not gonna lie, but it breaks down and sets up easily, and the travel case is simple enough. Your social life will be impacted by COVID-19 more than carrying your CPAP. I haven’t gone camping with it yet, but otherwise I’ve been using it for 7 years and not had any issues, whether I brought it with me or crashed for a night without it.

The first few weeks to few months will be bad. There’s no shortcut to getting used to having air forced down your throat. You’ll be bloated most mornings. It’s not sexy. Eventually you’ll get used to it though. After awhile, it will feel unusual to not have it on. And once you start sleeping soundly, it will change your life. That is no exaggeration.

Tips I’ve found to be useful: fill your water chamber. I used to just leave it dry and let the air pass through it, but my doctor said that contributed to me swallowing air. Distilled water is best, because it doesn’t leave deposits in your water chamber; but filtered or bottled water will do in a pinch, and tap water won’t kill you. Put your machine on the floor next to your bed. It keeps your nightstand clear, and eliminates the weight of the sagging hose. Laying on my left side minimizes air swallowing. Take time to adjust your head gear once, and it should be good for the month with a few light tightenings. If you don’t like your head gear, see your doctor about getting something different. There are a lot of options now.

Reply or DM if you have any questions. It’s really not a death sentence, it’s just an extra step before going to sleep. Rest well :sleeping:

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Life changes are some of the most painful things, I understand that. I also have friends in other time zones, and you need to make sure not to break your relationships with yours no matter what. Friends are people who love and support you, just as you love and support them and you need to cherish that. Maybe there is a way to message them, though the change would hurt more.

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Thank you for your reply :slight_smile:

I think the doom and gloom honestly comes more from me than my doctors, although they did explain that I have to keep it clean and use it every night. I have a phobia with washing things like dishes by hand where I’m scared that I can’t get all the soap suds off, like, I worry there will be harmful residue or something. Not entirely sure where that came from, but I’m getting better every time I wash my mask and tubing.
My schedule this week was pretty busy and there were a few nights where I fell asleep without using the CPAP. Didn’t feel the best the morning after, but yes, I did survive. Still hate my machine, but I’m slowly getting used to it and trying to not fret so much about a routine. Hopefully by the time I see my doctor again in about a month, I’ll be more comfortable with, as you say, having air forced down my throat haha

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I’m trying hard to maintain connections with the people who make me happy; I’ve even managed to overcome a bit of anxiety/introversion and reach out to some irl friends I haven’t spoken to in a while.
Maintaining positive relationships and friendships can be hard, especially during this pandemic. But in this time away from people, I’ve come to realize just how much I need them in my life. I’m hoping I can continue to find time to talk to my friends in other time zones, because as much as I need time to myself to recharge, I also don’t like being lonely.
I want a family of my own some day, but finding the right person to do that with is an even more difficult struggle. It’s something on my mind a lot lately as I look to the future. I don’t want to spend my future with just anyone, but I don’t want to look back on my life someday and regret not sharing it.

I used one for about 15 years. Then I got sick and lost weight, now there’s not a single mask on the market that fits my face. I tried every mask that I could find on the market, many of them paid for without insurance, because insurance will only cover a couple per year. I tried nose pillows, but the air velocity causes my sinuses to swell shut.

I did find out however, that side sleeping reduced the obstruction. At this point, the only solution possible is surgery to my sinuses, which is often unsuccessful, or a tracheotomy. I think I’ll keep side sleeping.

When I was using it, I really didn’t change sleep schedule at all. The biggest change was not having to take naps during the day. Fortunately, because I live in Florida, I usually did not use the water chamber, as the air was humid enough. I kept my machine on the nightstand, and the hose draped over the headboard, so I wouldn’t feel its weight. Every few days, I would clean the mask with alcohol, and put a few ounces into the tubing and work it around. There is usually an air filter that should be washed occasionally.

My water chambers had a plastic top, and a metal bottom. I figured out that I could pop the plastic off, and use the bottom to hold small parts and screws while I worked on computers.

I was not given any advice regarding sleep schedule. Perhaps it was a good thing not to have gotten any. I actually did have more waking hours during the day and evening, due to not needing naps.

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Thank you for sharing your experiences.

I’m sorry that there aren’t masks out there that fit you; they’re uncomfortable enough to begin with and then to have to go through the frustration of trying so many different ones and to pay out of pocket makes this that much harder.

Surgery would be out of the question for me as well. As a singer, I worry how it would affect my voice, and then to know it might not be successful - I’d rather be perpetually tired than lose my voice, my means of expression. I actually normally sleep on my side, and try to even more so now that I’ve been diagnosed with sleep apnea. It’s tough to find a comfortable position to sleep in with the mask strapped to my face and having to sleep using a wedge pillow due to my GERD (acid reflux). I need to find a pillow that I can use that has like, cutouts for the mask. But I’m pretty sure my insurance wouldn’t cover that. It would be great if I could see one in person, get my hands on it instead of just ordering online. The treatment for sleep apnea is such a hassle! I hope that side-sleeping helps you, or that you can maybe find a custom mask so you can rest easy.

I feel like I have to get control of my sleep schedule partly due to the amount of time it takes to keep the different parts of my auto-cpap clean, but also because of some of the medicines I need to take at certain times of day. I need to make sure I coordinate those things as well as work; my hours there vary from day to day. And then of course all the other adult responsibilities I have to take care of. And then MAYBE by the end of the day I’ll have time for myself, but I hate having to schedule me-time. It’s all so overwhelming, even when I break tasks down into smaller pieces. Because then I can see all the things I won’t have time for.

Blockquote I actually did have more waking hours during the day and evening, due to not needing naps.

The more sleep I get, the less likely I’ve been needing naps. Last night I didn’t sleep well for various reasons, so I feel very much like I need a nap right now. But having those afternoon hours where I used to nap now being freed up due to generally having more energy; that’s priceless. The challenge now will be to not push myself too hard and overdo it.

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I have a CPAP pillow. It does relieve a lot of the pressure on the hose. It took me some getting used to because it’s relatively small, but now no other pillow feels quite right. It most likely won’t be covered by insurance. Mine cost $75, but it has a good warranty, multiple layers to configure it however you’d like, and of course all the features (cutouts and a hose tether) that make it CPAP friendly. I’ve had it 2.5 years now, and I’d say it was money well spent.

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