I was shocked when I got the diagnosis, and shocked by the lack of information beyond the basic "you have OSA, you need a CPAP" type of talk. I thought that my snoring might be easily treated with a minor procedure, I didn't realise there was a likelihood that it was a lifelong condition.
I was told nothing of the potential risks of having OSA, nothing about the benefits of CPAP and so far all my information has come from online sources.
I have lots of silly questions in my head now (the first being, when am i going to get my trial of the CPAP machine - it seems like the wait for that could be a long one as well).
I also have questions like is this a non paying prescription service? How long does an oxygen canister last? How do I get my oxygen? I toss and turn at night, how will the mask cope with that? How heavy is the equipment? What about taking it on holiday? What about Disability rights?
I am so glad that you had the courage to post about your fears, questions and anger at the lack of common knowledge about CPAPS and OSA.
It almost feels as though one has joined an 'exclusive club' - that is kept secret from everyone, and seems somewhat overwhelming at first. I have been using a CPAP for over 7 years now, and despite having a kind GP and specialist, had to learn a lot from the net. I do find that the UK press have not latched on to OSA and CPAPS as they do for ME, cancer or Epilepsy - just to take 3 examples of current mediatised life threatening conditions. I always laugh hollowly when I read that the 'cure' for snoring is the 'tennis ball sewn in the back of pyjamas' or external nose openers!
No, we have to come to terms with the fact that OSA IS a serious condition, and that it has to have regular treatment - ie the use of the CPAP every time you go to sleep. BUT, and it's this big BUT that makes OSA less of a worry than other 'lifetime' conditions, it is MANAGEABLE. And you can lead a full and fruitful life, in better health and for its full term by using the CPAP correctly and enjoy a better quality of life after a good night's sleep.
It will take time to come to accept your condition - OSA - and sadly there will always be ignorant people around who don't know anything about it and laugh at it. IGNORE THEM. They aren't going to do you any good. You just stick to managing your condition and TAKE NO NOTICE. There are far more OSA sufferers on this planet than you might think - and even more who have not yet been diagnosed, nor even appreciate that they are at risk. You are NOT an oddity, nor really should you consider yourself 'disabled' because your CPAP 'enables' you to live life better than before!
OK this is a long and rather rambling post - but I sense that you feel rather angry and frustrated at the lack of personal information given to you, and the feeling of suddenly having to change your sleeping arrangements FOR LIFE .... which is a great shock even if you know ultimately it will do you good.
Please try to stick with it! After a while it WILL seem normal.
I cannot really answer many of your questions specifically because I don't live in the UK and the medical 'rules' here are different, but I can help a bit.
A CPAP machine does not need an oxygen cylinder at all. It takes air out of the room that you are in and passes it though a compressor, to put it under the right pressure to keep your airway open. The pressurised air is then delivered to you by a tube (I call mine my elephant's trunk!) to a mask that covers either your nose or both your nose and mouth. You will hear a tiny hiss as there is a safety feature incorporated so that you do not re-breathe the air. The air then passes down your nose (and/or mouth) and disperses. You may find unfortunately that you tend to fart more because you are swallowing more air using the CPAP than you did before.
Incidentally the air from the room is filtered before it is compressed, and so you will need to change your filters regularly - usually a special lint-type pad about 2.5 inches by 1 inch.
The size of each machine varies, but I would say that they should be the size of a shoe box at most, and are relatively light - about 2 kg max. They are supplied with a discrete carrying case, and so you should not feel that anybody can see what you are carrying is different from any computer lap top or portable DVD.
I travel regularly by air - not just to the UK, but to the USA (check your voltage!!!), Mexico, and all over Europe. I also travel by ferry.
There is NO PROBLEM with taking your CPAP with you - but please make sure that you get a LETTER FROM YOUR DOCTOR or the SLEEP CLINIC to affirm that you have OSA and that this CPAP has been prescribed for you.
Customs and security sometimes check it, but I am glad that this makes them more aware about OSA, but this never interferes with the running of the machine. NEVER put your CPAP in hold baggage. Incidentally as a CPAP is considered medical equipment, you should be allowed to carry it without it counting towards the weight limit for handbaggage imposed by the airlines.
However, it is impossible to use it 'en route' when flying, because there are no power points in the cabin. You can certainly use it when using a ferry cabin (often shaver sockets will take an adapter),. Long distance buses cause the same problems as flying.
But two vital accessories required when travelling are:
1) A travel adapter for the country you are visiting (easily bought at Dixons, Boots or other travel shops ... or even at the airport or ferry port)
2) An extension cable - so many hotel rooms do not have bedside sockets, and a cable spares you the need to rearrange the whole bedroom because the majority of sockets are by the TV or tea tray, opposite the bed!
These are not difficult to find, and help to make travel much easier. Chambermaids are very good at dusting around it, and leaving it alone, so don't worry that it will be 'fiddled with' when you are out.
Travelling with a CPAP is really easy and you can enjoy lots of wonderful holidays, though I'm afraid that until someone invents a portable generator (quickly please!!) you really shouldn't consider gulet cruises or camping or very long distance coach holidays (involving overnights on a coach) because you need an electricity supply.
I'm sorry that I can't help about disability rights issues - try your local Citizens Advice Bureau - and if you do require oxygen (which I think is highly unlikely), BOC supplies individuals too. Your local Red Cross centre should be a good source of advice, though I would expect the sleep clinic or the hospital to advise you once you are supplied with your machine.
Glen, welcome to our OSA world. It's very much an international club! Life is to be lived to the full, and with the help of the sleep centre and other CPAP users you will come to terms with OSA. Do not hesitate to ask as many questions as you need - none of them will ever be considered as silly - and keep persevering. There are a lot of good things waiting to happen in your life, and with OSA management and the CPAP you have nothing to lose and everything to gain.