***STOP PRESS***

Please note that future blogs will be written on our new website at http://www.hope2sleep.co.uk/blog/

I hope you’ve found the articles on this blog helpful, and now we have been registered as an official non-profit charity, it is my intention to write a lot more helpful articles on the above link.  We welcome donations from people willing and able to support our work, and thank you for your support 🙂

I’m Kath Hope, the founder of Hope2Sleep Charity who raise awareness of Sleep Apnoea and all Sleep Disordered Breathing, as well as providing free support to existing sufferers and CPAP and Non-Invasive Ventilator Users.

Being a sufferer myself of Sleep Apnoea and Hypoventilation, I know first hand the frustrations we face, which is why I set up the charity with a great team of trustees to help our fellow sufferers.  We are passionate in raising awareness of Sleep Apnoea for the sake of the many people who are struggling on in life without having being diagnosed yet.  We  work closely with sleep medics, CPAP manufacturers and charities like the British Lung Foundation, who thankfully ran a very successful 3 year Sleep Apnoea Awareness Campaign here in the UK.  I served on the British Lung Foundation’s Sleep Apnoea Advisory Panel and I am the  ‘Expert Patient’ of Guy’s & St Thomas’ Sleep Disorders Centre.

I will be blogging as often as I can on the Hope2Sleep Charity website with information, latest news, CPAP product reviews – in fact just about anything relating to Sleep Apnoea.

We have a public page at https://www.facebook.com/hope2sleep.co.uk giving out latest information on both Sleep Apnoea and new products and there is also a very active Private Facebook Support Group so feel free to join us there
https://www.facebook.com/groups/SleepApnoeaSupportAndAwareness/ 

For those of you who don’t use Facebook we also have a Sleep Apnoea Forum called Hope2SleepGuide so please do join us on there, where you can get almost immediate help from other sufferers.  There are people on hand almost 24/7 as we have members from all over the world in different time zones.

MY STORY

My story of living on CPAP for the rest of my life started with the day I confidently went to the Sleep Specialist thinking I would be given the news that my sleep test had proved I didn’t have Sleep Apnoea after all.  HOW WRONG I WAS!!!  Instead I was told I have moderate to severe sleep apnoea, with a reading of 30 apnoeas per hour.  I was convinced I didn’t have the ‘condition’ as I wasn’t ever aware of waking up in the night to start breathing again, and I also wasn’t overweight.  Yes, I knew I was a snorer (but it never bothered me, as I slept through it!).  I’d always been known as a ‘dead head’ in a morning, which I now realise was because, unbeknown to me, I’d hardly slept due to stopping breathing approximately every 2 minutes.  I was always tired and exhausted, but I put this down to being a busy music teacher and just allowed myself the odd nap when I could fit it in.  In a way, it was a relief to be given my diagnosis, as at last I could make my friends and family feel guilty for calling me a ‘dead head’ and I was told I could live a much better quality of life with CPAP treatment!  It also explained the reason why I would practically collapse with exhaustion every now and then, and I’ve lost count of the times I’d been checked for things such as anaemia, glandular fever, leukaemia, m.e., thyroid problems  etc.  In fact, if I’d been diagnosed with sleep apnoea years ago, we could have saved the NHS a lot of money!

The day I brought my CPAP Machine home was exciting as I’d read the stories of the miraculous overnight cures others had gained from using their machines.  Well I can assure you that didn’t happen for me (and most sufferers tell me it didn’t happen for them either).  It’s wonderful to hear such lovely stories of overnight success, but for most of us we have to persevere until we get the comfortable sleep we deserve!  I was determined to get my treatment working for me though, due to the other dangerous health problems associated with untreated sleep apnoea – such as heart attacks, strokes, diabetes, thyroid problems, alzheimers and other links that they are finding out as more research is being done.  After I’d been diagnosed I realised that my own mother must have also been a sufferer.  Her snoring used to make the house vibrate, but unfortunately she died of a heart attack at the age of 49.  If only we’d known………..

My biggest problems have been with my full face mask, which I need due to being a mouth breather (and I’ve tried most of the ones on the market).  When I eventually found one that I could feel relatively comfortable with, there were the morning strap marks on my cheeks to put up with, for which the Strap Covers came to my rescue, and sores on my nose bridge for which the CPAP Moisture Face Nose Cream helped and the Nasal Cushion!  Another problem was with the hose tugging at the mask, causing leaks and for this and the CPAP Hose Clips  help with this, along with the amazing solution – the Arden Innovations Hose Lift, which doesn’t just help with the mask tugging problem but it also prevents ‘rainout’.  In fact I truly believe this should be part of the package (mask, CPAP machine + hose lift), but unfortunately the hospitals cannot afford this luxury!  Another problem I had was with the water collecting in my tube (known as ‘rainout’)  from the humidification, and as well as the hose lift, what fixed this for me with was the Hose Cover.  I also discovered that washing with liquid detergents eventually caused a residue around the mask seal, thus causing leaks, and after trying out several cleaners, I settled on the Citrus II CPAP Cleaning Wipes and Sprays.  The list goes on….., but one thing I would highly recommend is that you carry a Medical Alert Card with you wherever you go to alert, just in case.  I have several customers who have told me of horrific experiences during anaesthetic and they’re thankful to still be here, due to either they themselves, or the medics treating them, not knowing they had sleep apnoea.

NOTE – for a full web page for all problems CPAP users can experience, see this link ‘Tips & Problems for CPAP.’

At the moment, here in the UK, sleep apnoea is a very lonely ‘condition’ – in that most sufferers haven’t been diagnosed yet or even realise they have got it.  Thanks to a great GP, Ear Nose + Throat Specialist and Lung Function Specialist, I’m one of the lucky ones to have been diagnosed.  Furthermore, thanks to a wonderful Lung Function team of nurses and technicians who have supported me through the bad times, I can now say that my CPAP has grown to be my best friend!

If you suspect you may have sleep apnoea please don’t ignore it.  Seek further help!  We also have a Sleep Study Service to diagnose Sleep Apnoea if your GP isn’t taking your suspicions seriously, or if you feel like you’d rather be more sure before you approach him/her.

I hope all of this information has been of help to you, which is my dearest wish!

Best Wishes and Good Safe Sleep.

Kath Hope