Just lately I’ve come across a fair few people, including men, who are having difficulty coming to terms with the fact that they will probably have to use CPAP for the rest of their lives, unless an alternative comes up of course. I regularly hear people saying how embarrassed they are to tell a new partner they have to wear a mask in bed (anyone that judges a person by this is, in my opinion, not worth getting to know anyway). I fully empathise with these people and I certainly didn’t relish the fact of dressing up like Darth Vader every night for bed either! However, unless your sleep apnoea is mild, CPAP remains to be the gold standard for successful treatment just now. So how did I cope?
As I mentioned on my first blog, Hope for Sleep Apnoea Sufferers, the fact that my Dad had just been diagnosed with bowel cancer when I got my OSA diagnosis, and could quite easily have lost his life were it not for the advancements made in cancer treatment, I counted myself lucky that there was a marvellous piece of equipment available to keep my airways open. However, at times I did still feel sorry for myself, but something else happened one day several years ago which helped enormously:-
I gave myself a rare day off and went to the York Designer Outlet for some retail therapy, dressed in my new designer boots. However, I got more than I’d bargained for with my new boots, and quickly became embarrassed at the noise my heels were making on the floor of the shopping centre. Whilst I do quite often draw attention to myself by saying and doing silly things, I don’t intentionally like making myself the centre of attention 😀 The more I walked, the more the noise of the heels was annoying and embarrassing me. That is, until I looked at a man in a wheelchair with no legs!! All of a sudden, I felt really humbled and the thoughts that were going through my mind were things like, “what that poor man would give to have noisy heels to walk on instead of having to manoeuvre his wheelchair in and out of the shoppers.” I soon changed my thoughts and felt quite ashamed. However, the story doesn’t end there……….
An hour or so later, I stopped for a coffee and who should be at the next table, but the man in his wheelchair. (I never did ask his name). We got talking and his whole attitude to life was amazing. At one point, I asked him if he felt bitter about losing his legs after his accident he’d been telling me about. His words were “No way love. I count myself lucky that I’m here at all and if I spend my days wishing things were different, I’d waste a lot of valuable time wishing for things that can’t be, and no doubt make myself miserable.” He added, “Life’s for living, and for me, everyday is a blessing.” There’s more…..
I went on to tell the man how helpful he’d been to me, and pointed out that no way was I comparing my situation of using CPAP with his loss of limbs, but nevertheless, he’d helped me as much as my Dad’s situation had. He replied, “oh that old thing. I developed central sleep apnoea after the accident, so at night I’m hooked up to a BiPAP machine.” At this point I almost cried! There was this lovely man, happy and enjoying life, yet during the day he was in a wheelchair and at night a mask and BiPAP. Talk about a life-changing moment for me!
I also read an article just this past few weeks about how a sleep doctor helps his patients, and he said that one of the best ways to cope with CPAP is to start telling yourself that it’s your FRIEND and not your ENEMY. Of course there are frustrations, which is why we sell all the CPAP Comfort Products on our website, but let’s keep telling ourselves that at worst, our ‘friendly’ CPAPs will protect our bodies from further damage, and at best could save our lives!
A great way of helping ourselves is to mix with as many other CPAP users as we can via local support group meetings and joining forums like our Hope2SleepGuide one or the Private Facebook Group, where there are many lovely people in the same boat.
Best Wishes and Good Healthy Sleep!
Kath
Great post Kath, very moving and helpful too xx
Thanks Roz and hope it helps many people 🙂
So true, we must look at the wider picture and see CPAP is for purpose.
I totally agree Ian.
Good blog Kath ….. sometimes we need a jolt to re-align our priorities and focus. Although I was daunted when first diagnosed I wouldn’t be without my CPAP now.
Interestingly when I first started using CPAP there were times when I would wake quite early and take the mask off for the last couple of hours sleep. Nowadays if I take my mask off and try to go back to sleep without it I feel naked, vulnerable…..
I know that if I hook up to the machine I will sleep well and awake rested and for me it feels like a safety blanket. When I put on my mask I feel safe and secure.
That comment you made about feeling naked + vulnerable without CPAP is exactly how I feel now – although I never ‘dreamt’ (pun intended :D) I would ever feel this way about CPAP when I first got it.
Interesting blog. I can still remember what it felt like to not be able to sleep and be constantly tired and afraid that if a relaxed for a moment during the day I would fall asleep.
you ask if CPAP is a blessing or a curse, well in my case the question has never arisen it was then is now and will be for the foreseeable future a blessing.
i put on the mask, I go to sleep,simple I have used CPAP for 7 years now and still bless the thing every day. I got my life back and for all the difficulties of using the Machine I am so grateful that it was available
Ps|. thanks for all the work you do on the website
Same here Alan. Someone on Twitter commented to me that CPAP’s the best sleeping drug available, and I commented back that I agreed and the safest too 🙂
I am a Funeral Director who also has sleep apnoea [it’s my one year anniversary this month actually] In my job, if I’ve learnt nothing else over the 25 years I’ve been in the profession, I’ve learnt to live and love every day that passes, because we are all ‘a long time dead’ with no CPAP machine on hand to wake us. Instead of me being the funeral arranger, I could very well need the services of a Funeral Director to arrange my funeral if my condition hadn’t been diagnosed. I love my ‘sleeping tablet CPAP’. I have a good 7 hours restful sleep each night, which hasn’t happened for about 10 years. I wake each morning, like everyone, not wanting to go to work, not wanting to go shopping, then I remember, I’m alive.
Happy CPAP Anniversary Jan 😉 What an interesting comment to this blog – so many people avoid looking after themselves better, whether it be CPAP related, smoking or drinking etc., believing they’ll somehow get away with it. However, in your particular profession, you are daily reminded of what wrong choices can lead to. Thanks for sharing this!
Everything is very open with a precise explanation of the challenges.
It was definitely informative. Your site is very helpful.
Thank you for sharing!
Pleased to be of help 🙂
I’m glad to read your blog. This is awesome. It definitely gives me a information I need. keep on sharing.
As a Resmed CPAP…user , who is still struggling badly after 5months, it’s good to read and feel ‘no alone’..I find the Hospital is all about ‘compliance’ big stick…we’ll inform DVLC et al….which is not productive and just seems there is all stick and NO carrot in their approach.
Sorry you’re still struggling David, and this is precisely why people need to look for support (which I’m pleased to say you’ve found in our Facebook Group). I was very alone in my struggles many years ago as the UK thought it was a rare condition back then – let alone for someone like me who wasn’t overweight! Thankfully they know more now, but you can’t get better support for actually using CPAP than from others in the same position 🙂