Hello Kazzie and a BIG welcome! Thank you so much for posting and for being so courageous in telling us what's going on for you at the moment.
It is quite a lifestyle change to discover you've got a serious medical condition that needs lifelong management .... and to say that this can be a nasty shock is really an understatement. We've all been there. You are not alone and you are certainly in the vast majority who think 'Heck (or worse!) Will my life ever be the same again?'
I've been living with a CPAP machine for over 10 years now. It was strange at first, but I'm sure your husband, like mine, will be grateful for more quiet in the bedroom so HE can get to sleep(!) and that you will be around for much longer than if you hadn't been treated ... your risk of a heart attack or stroke in your sleep would have been considerably increased before treatment and now it is back to normal!!
Please be assured that having xPAP doesn't mean an end to intimacy as you've enjoyed it before. It simply means incorporating putting your mask on when you're ready to sleep. I can snuggle against my husband because the hose can swivel and thus be moved out of the way and all the material is quite soft and pliable. The only complaint is that he can get a little breeze when he's not expecting it on his face from the valve where my exhaled air comes out. OK so it's not the sexiest accessory but you and he WILL adapt to it in time!! I'm sure he's glad you are going to feel less tired ... the OSA has a considerable effect on your mood and sleepiness, even though you are still being treated for the pernicious anaemia. You should start to feel a bit more optimistic soon.
However, let's look at a couple of specific problems, which I'd like to reassure you are common to nearly ALL of us when we start xPAP. You are NOT repeat NOT being a whinger, but simply trying to come to terms with something that is completely new to you. AND ALL CREDIT TO YOU FOR STICKING WITH IT.
I am suffering sweats from feeling hemmed in with the mask, my nose and throat are really sore already as well as 2 patches of 'rashy' sore skin on my forehead where part of the structure of the mask sits.
The sweats are normal, and will go away once you try to deliberately relax. I think they're related to something else which I'll deal with later.
As regards the soreness in the nose and throat, have you been given a HUMIDIFIER? This will moisten the air before you breathe it in, and I think you'll find that this makes the whole procedure far more comfy for you and will alleviate this problem. Contact your sleep clinic ... but hang on because there's a couple of other things to mention!!
The rashy skin (and sore spots) are also quite normal as the face needs to get used to having something placed against it. First of all, make sure that your skin is nice and clean and dry before putting your mask on. I found I needed a 'corn plaster felt doughnut shape' to fit between the sore spot on my forehead to give the skin a chance to heal. Other people find that a pad of gauze also proved helpful ... you need to make sure though that it doesn't make your mask leak. Do make sure that you have a good mask fit .... lie down with your machine OFF. Put the mask on and pull the mask tabs gently so that they are symmetrical and that the mask just sits gently on your skin and is not pressing down hard. Depending on the type of mask you have, adjust the mouth tabs first and then the forehead ones. Once you've adjusted the mask you can put the machine on. This may be all you need to do.
Oh and moisturise the sore bits well in the daytime too .... good excuse for a nice present of some pricey swish cream perhaps!!!
I can't seem to breathe enough to use the air that's being blasted at me and so have a feeling of my chest being like a balloon. It feels like the machine is trying to rush me, I'm exhaling but it's still trying to push air in at the same time! I do get to sleep eventually but soon wake because I'm so 'blown up' and uncomfortable. I have ended up having to use my ventalin each night that I had the machine and yet it's been months since I've needed that, as my asthma is well medicated.
I can't speak for the Ventolin and your asthma, but I think I can suggest a way forward for the first part of your paragraph.
Many xPAP machines (and you don't tell us which one you're using so I can't be 100% sure, hence my word 'many') have a feature that makes it easier to breath out than breath in. This is called an EPR (expiratory pressure release). Some of us need this feature, some don't. Most of us don't start off with our clinics enabling this feature, but if we find that we have the effects you are suffering, we have to go back and ask for it to be enabled. Explain this to the clinic and ask to have the EPR on your machine enabled, or to have another machine given to you with this feature. Oh, and sorry, with all this helpful air going into our bodies, we do burp and fart more than we used to so don't be surprised by this!
I am so torn right now! I am, believe it or not, usually a 'just get on with it' sort of person but I have met my match this time! I realise the dangers of leaving myself without treatment especially as I am scheduled for quite major surgery soon, so that's not really an option BUT long term I can't see the gains. I have read other peoples stories of great improvement in their quality of life due to how disruptive their symptoms were before but I don't have that incentive as I don't have those problems. The one symptom I have is also symptomatic of my other, unrelated, condition so that's here to stay anyway. I now go to bed with a mask on my face and the airflow prevents me from talking. So, where I used to snuggle into my hubby and we'd chat about our day until we fell to sleep, I now lay on my back, silently with my plastic barrier to any snuggles I used to get and inwardly so lonely!
You put your feelings into words very well. I don't think there's a person on xPAP treatment who hasn't felt exactly the same. I know I did!
You will be able to use your machine in hospital when you have surgery and it's vitally important that you tell your surgeon and anaesthetist that you have OSA as you'll need to have a special eye kept on you when you come round. Also you'll need to use your machine when you sleep in hospital. You and your hubby will come to a new understanding about chatting in bed and snuggling. And it will be extra special because it will be unique to the two of you. You WILL find that you have more energy during the day and your mood should pick up. It's always a difficult start, but once you become used to your machine and mask, there's nothing you can't do .... holidays, overnights with friends ... life WILL continue as before, but it will take time to get used to it. If you do intend to travel, make sure you have an extension lead and a foreign plug adapter as part of your kit!!
The problem with OSA and its management is that it is so much more common than you might think, but it's still a bit taboo and you can't see into everyone's bedroom at night! You are still young (I'm old enough to be your mum) (JUST!!!!) and although I thought I could take on all of life's challenges, it's only recently that I've learned that sometimes you need other people's experiences and encouragement to take on something new. It's NOT weakness on your part and I admire your determination to succeed and am cheering you on, but sometimes you do need a bit of input from someone who's been where you are now!!
Please stay in touch. You've made great strides in coming to terms with the management of your OSA, and I am sure that time - and getting help from your sleep clinic in the form of a humidifier and in the EPR enablement - will be all that you need. In fact I wouldn't be at all surprised if you end up helping other people at the beginning of their xPAP journey and being very good at it.
Kindest regards ... and phone your sleep clinic!