British Snoring & Sleep Apnoea Association

I don't really know when it all started, but i have memories of people complaining about my snoring since I was aged about 15. Being a little older than that now (41), I think I may have had Sleep Apnoea for quite a long time......

The early part of my working life didn't allow for much daytime sleepiness, as the jobs I had were all physically demanding and kept me on the go all day. There were occasions when I would have to accompany lorry drivers to assist with the unloading and installation of office furniture, and they always complained about me being bad company (good name for a band eh...oh...somebody already did that!) due to my falling asleep before we reached the motorway. The Warehouse being less than 3 miles from the motorway, I can quite understand their feelings. On one occasion we had to be away for a few days and I shared a room with one of the drivers (a dear friend who lost a short lived battle with cancer some years ago now), he said that would be the one and only time that this happened as he didn’t get a wink of sleep because I snored so loudly!

In January of 1999 my career direction changed and I moved out of warehouse work and joined the IT department of the company I was working for. This led to me working varied hours and being on call pretty much 24/7. Not too many problems here except when I would be alone on a late shift and be office bound, I began to feel myself drifting off occasionally. I managed to get around this by checking the Server Room which, being Air Conditioned and cooled, maintained an almost fridge like atmosphere (Guaranteed to wake you up a bit after a few minutes).

In May 2001, my Wife (Linda), I, and our 2 children (Kayleigh 5 and Christopher 18 months at the time) drove to the north western most point of Cumbria for a Holiday. During this week away I suffered the most blinding headaches ever, not migraines, but tension headaches. On our return I booked an appointment with my Doctor who duly arranged an appointment with an E.N.T Consultant at my Local Hospital, thinking that the headaches could be sinus related.

The day of the appointment arrived and I took myself off to the Hospital, filled in some forms and was shown in to see the Consultant. Things went downhill from here! The consultant point blank stated that he would do nothing for me until I had lost 4 stone in weight (yes 4 Stone!!), I weighed 17 stone at the time. He said that my neck was too thick to operate on the soft palate, to reduce the snoring or remove the adenoids. No mention was made of sinuses and/or headaches. He referred me to the Hospital dietician.

At 5'6" and 17st I know I am overweight, but to not investigate at all!, I was appalled. Being a mild mannered kind of person I went along to see the Dietician and agreed to sign up for a 12 week group class on a Monday evening. My diet was evaluated and checked out ok, however I was asked to increase my activity levels and drink about 2 litres of water a day. I signed up to join a gym and started to drink more water, although I still can't manage more than about a litre a day.

July 2001 saw me change my function within the IT Department to a more Family friendly 09:00- 17:30 job testing software for our in house development team. This meant a more deskbound approach to working and I started to feel more tired in the early evenings. I would fall asleep in front of the TV at about 18:30, much to Linda's annoyance.
Weekends would mostly be visiting relatives and falling asleep in their armchairs and Sunday afternoons were totally wiped out be sleep after lunch!

December 2003 saw me not getting anywhere with my weight loss, so I decided that as well as going to the gym, I would take up the sport of my youth, JUDO. Although this was a bit of a shock to the system, I enjoyed myself, and my children joined as well. This gave me more encouragement to keep going (I still attend Judo and have been club chairman since March 2005).

By early 2004 I had had private treatment for the headaches, osteopathy on the neck and Cranial osteopathy as well (let me tell you, that is a totally weird experience.....). I kept returning to the doctor each time a bout occurred and mentioned my tiredness as well, but he didn't seem too worried about it at that time. I had blood tests to check for diabetes, under active thyroid, overactive thyroid, 24 hour blood pressure monitoring, you name it I had it.

In early August 2004 my Line manager and his manager sat me down and said they had had several reports of me nodding off at my desk, from different people within the IT department (a department of over 48 staff at this point), obviously I knew this was happening to me, but didn't know why I was so tired all the time. I was sleeping for 9 hours a night! They said if I had a medical condition they would assist me but I would need evidence of this.

In April of 2004 we had visited friends in Ireland, and our friend said she was due to be given a CPAP machine by the Consultant at the Hospital in Dublin after having been diagnosed with Sleep Apnoea. I had never heard of Sleep Apnoea, but all of her symptoms sounded extremely familiar. When I arrived back in the UK, I did some research and downloaded info on Sleep Apnoea. Off to the doctors again, and this time I said that I was under the threat of losing my job through the nodding off all the time and showed him the research I had done on Sleep Apnoea. The doctor said that he had just been given the go ahead to refer a small number of patients to the Oxford Sleep Clinic, and that he would arrange for me to have an appointment with a consultant there. He then asked me to tell my employers that my symptoms were being investigated and that Occupational Health could contact him for details if it were required, I filled out the relevant permission forms for this straight away, I couldn't afford to be without my job.

On the 18th August 2004, on my way to work via a different to normal route as I had had to drop my Kayleigh off at my mother's house as our childminder was ill. I pulled away at a roundabout but the person in front of me stopped, so I drove into them. By this stage I was getting pretty fed up, and didn't need the aggravation of an accident and insurance companies etc to deal with...

13th September 2004. I was not looking forward to seeing a consultant again after the last disastrous visit, but I was pleasantly surprised. The consultant (Dr Lesley Bennett) put me at my ease and she explained that yes, although my weight was a contributory factor, it was not the whole case. I have a set back lower jaw which makes my airway smaller and could possibly be a cause of snoring and apnoea's. She booked me in for a sleep study and said there could be a bit of a wait.

I arrived home wondering how long i might have to wait for the sleep study as anything related to Hospitals have a habit of taking months before you hear anything and then waiting more months for the appointment itself, but a few days later a letter arrived from the hospital asking me to go in for an overnight Sleep study on the 24th September.

18th September 2004. Exactly one month to the day at the same time 08:40 I did it again, drove into the back of somebody on the way to work. Once again, taking a different route to work than I would normally would have done. I was working on a different site for a few days. Spooky isn't it!

24th September 2004. So, in a hire car, off to the Churchill Hospital in Oxford for a sleep study. I arrived about 8pm and was shown to a side room. I duly got myself ready for bed, the nurse hooked me up to an ecg machine and an oximeter. The bed covers were wide horizontal black and white stripes, to assist the infra red camera in detecting my movement whilst asleep. There was also a microphone above the bed to record my noises. In the morning after a not brilliant nights sleep I went home.

I had been told to expect a wait of about 6 months for a machine, so I was very surprised to receive a call from the hospital asking me to go for a trial CPAP run on the 24th November 2004. I was told that because my Apnoeas were more than 70 per hour (560 on an average night’s “sleep”) I had been put on the cancellations list, and one had become available. I think at the time I was very nervous and anxious, but at the same time very excited, if that makes sense!

I had kept my company informed throughout these appointments, and they said that they would wait to see what the treatment did for me before they decided whether they needed to inform the HR department or take any other course of action. I know a lot of other firms are less helpful and can only be thankful that my bosses were as understanding as possible.

On the 7th November 2004, I wrote to the DVLA, informing them that I had been for a sleep study and had subsequently diagnosed with Obstructive Sleep Apnoea. I asked them what action I needed to take, if any. They duly sent me forms to be filled in and sent back (now replaced by DVLA form D4) and I replied in an almost timely fashion.

Wednesday 24th November 2004. The big day had arrived, I booked the Thursday and the Friday off of work, as I didn’t know what to expect and what time I would be away from the hospital, or indeed how I would get on with the CPAP I was trialling overnight. On arriving at the allotted time (8pm) the Ward Nurses ushered me to a side room. A short while later one of the Sleep Nurses arrived and explained what was due to happen. Overnight I was hooked up to an Auto-titrating CPAP using a nasal mask, the output of which was monitored. When I awoke on the Thursday morning, I was unable to express how rested I felt, my first almost full night of proper sleep in years. The Nurse promptly gave me my own CPAP machine, a Resmed S6 Lightweight and Resmed Ultra Mirage Nasal Mask (fully adjusted in its own carry-bag with all the necessary accessories). I went home proud as punch, surprising Linda at how early I was home and how bright and cheery I was.
Thursday Night went ok, sleeping until about 3am with the mask on, then removing it and sleeping through until 7am. I managed an average of about 6.5 hours a night with the mask over the trial one month period. Some nights were good, others were frustrating, and some I just gave up and cried (although I think that was partly the shock of knowing this would be with me for the rest of my life!).

Thursday 13th January 2005. Went for my Hospital check-up to see how I got on with the CPAP. The Nurse asked me how I was getting along with the CPAP and if I had any problems. I said that the masked leaked around the eye area and I’d like to try another one. She fitted me with a Respironics Comfort Gel mask and it seemed ok at the Hospital. That night I put on my mask and lay down to sleep, only to find that the mask moved and not only did it leak, but it made a loud whistling noise whilst it was leaking. I didn’t sleep too well that night. In the morning I got out the booklet that came with the mask and followed the instructions on how to heat the gel cushion and reshape it to fit my face. Confident that I had cured the leaks I went to bed that evening, put on the mask and lo and behold, it leaked!

The following week after several strap adjustments, I gave up, phoned the hospital and asked for the Ultra mirage back. Yes, it leaked a bit but at least it didn’t whistle while it was leaking, and that meant Linda didn’t get disturbed by the whistling as she had with the other mask.

Friday 11th March 2005. Went to Judo as normal, but landed awkwardly on my elbow which in turn fractured a couple of my ribs.

Saturday 12th March 2005. I drove Linda and Kayleigh 125 miles to Ipswich. Kayleigh happened to be competing in a trampoline competition there and had to start at 9am Sunday, so we went up Saturday and stayed in a Travel Lodge. Why do all Travel Lodges only have plug sockets the opposite side of the room to the bed? I couldn’t lie down properly anyway because of the ribs, so sat propped up on a sofa with a couple of cushions and my CPAP (not my most comfortable nights sleep!). Slept like this for a couple of weeks until the pain was bearable enough to lie on my side.

Sunday 5th June 2005. I successfully graded from 5th kyu (yellow belt) to 4th kyu (orange belt).

Saturday 8th October 2005. After spending a good chunk of the weekend at MK General Hospital, it seems that my "Chest Infection" is actually a "Lung Infection". As I also had left sided chest pain, I was given blood tests, ECG, aspirin and GTN tablets. This little mix of aspirin and GTN had me off on a trip somewhere for a good couple of hours. Linda was very concerned as I didn't seem to "with it".

Monday 10th October 2005. I Went back to the Hospital for another ECG, and set of bloods. I collected a new prescription for Aspirin, Paracetomol and Simvistatin. The Aspirin is to help prevent possible heart attacks, Paracetomol for pain control and Simvistatin to help reduce cholesterol. The Medical Team at the hospital have sent an appointment request to the "Rapid Access Chest Clinic" (I am told this will be within a couple of weeks), where I will undergo the "Treadmill" Test and whatever else they feel necessary to discount Angina and/or Heart Disease.

Tuesday 11th October 2005. Back to Hospital yet again, and more ECG and blood tests.
I returned to work on Wednesday, only to face the stunning news that two of my colleagues Andrew and Michelle were being made redundant! That was so not expected.

Friday 14th October 2005. I was still not feeling 100%, in fact feeling worse than I had the previous day, so my line manager, Phil, had said I could go home. This was still worrying me though because Bob's (Overall Department Manager) reassurances that only the 2 jobs were going did not really make me worry any less. These things were making it difficult for me to concentrate. I Went back to see my Doctor and he prescribed "Omeprazole" to counteract excess stomach acid that the Aspirin seemed to be producing, causing me heartburn.

Monday 17th October 2005. I had been taking the Omeprazole, but to little effect.

Thursday 20th October 2005. I telephoned the Hospital Chest Clinic, but they said that they had had no referral for me and that it would have needed to come from my GP. Hospital Doctors are not permitted to refer patients to the "Rapid Access Chest Clinic". Went to see my own GP and he had a letter stating that the Hospital was referring me. He was most annoyed at the Hospital's seemingly incompetent lines of communication so sent a referral himself by fax.

Monday 24th October 2005. The Hospital phoned and confirmed an appointment for Wednesday (2/11/2005) at 2.30pm.

Wednesday 26th October 2005. I received another letter from Cardiology department at the hospital stating that I have an appointment on 11th January 2006 with a Doctor Kardos.

Monday 31st October 2005. Got very nervous about this whole thing, I knew that it should have made me feel better knowing that my appointment was approaching rapidly, but there was also a feeling of dread. What if they found something?, what if they found nothing?, what about my Judo?, there were so many things coursing through my poor little brain that it felt a bit mushy!

Wednesday 2nd November 2005. Felt really nervous, stomach churning. I had my weight, blood pressure and ECG done, as well as a brief medical history and family medical history.

Thursday 3rd November 2005. Well, nothing was found, Heart was ok which was marvellous news, however it did beg the question as to why I still had some discomfort in the chest area, Lungs possibly?

Wednesday 9th November 2005. I received a letter from the Hospital; my appointment had been changed from 11th January 2006 to Monday 23rd January 2006 at 2.00pm.

Wednesday 16th November 2005. I received another letter from the Hospital; my appointment had been changed again from Monday 23rd January 2006 at 2.00pm to Tuesday 7th February 2006 at 2.00pm.

Wednesday 23rd November 2005. Received yet another letter from the Hospital, my appointment had been changed once again from Tuesday 7th February 2006 at 2.00pm to Tuesday 21st February 2006 at 3.40pm.

Tuesday 21st February 2006. I went along to the Hospital, didn’t get to see the consultant but saw one of his team of Doctors. My treadmill test was good and they saw no problems but I should keep taking the prescribed tablets. “What tablets?” I replied. The Doctor seemed to think that I should have been getting repeat prescriptions of Aspirin, Simvastatin and Clarithromycin. I told him that once the antibiotics course was finished so had the other tablets, so I stopped taking them!

Monday 4th December 2005. Linda’s birthday, also the day Mum went to hospital for a bladder operation. The operation turned out to be bigger than was first envisaged and she lost a bit of blood, so had to stay in for a couple of weeks.
Luckily she was home in time for Christmas.

Sunday 19th February 2006. Travelled down to Evreham in South Buckinghamshire for a Judo Grading, a very long and exhausting two and a half hours of a grading! I managed to complete it successfully to come away with my 3rd kyu (green belt).

Monday 20th February 2006. By this time we had all been expecting Mum to be recovering from her operation, but she seem not to be improving, and if anything becoming more overweight and having problems with painful legs. The District nurses would visit her every day or two and change the dressings on her legs and suggest remedies for the almost constant heartburn she was getting. Her doctor would not come out to see her but prescribed different creams for her legs over the telephone and tablets for the excess acid.

In April of 2006 she went back to hospital for a CT scan. Devastating news, the doctors think they found a tumour……
She was admitted to Milton Keynes General two weeks later on Friday 28th April 2006, and whilst there did absolutely nothing to drain any fluid from her or make her more comfortable. On Tuesday 9th May 2006 she was moved to the Oncology ward at Northampton General Hospital. They finally drained some fluid off to make her more comfortable and began the process of building her up for her operation. They operated on Friday 19th May 2006 and successfully removed the tumour, but she didn’t come round from the anaesthetic until the Sunday. I visited her throughout the week and she seemed better some days than others. At one point I was sure she was having hallucinations or at least memory flashbacks to periods in her past. She insisted that we carry on with our holiday plans, so, on Saturday 27th May 2006, me, Linda and our two children travelled north to Cromer on the Norfolk coast. We had signed up for a five day Judo course not far from the camp site where we were staying. The course would run Monday to Friday.

Monday 29th May 2006. I had set my mobile phone alarm, so wasn’t surprised when it went off at 5am, but the ring seemed different. It wasn’t the alarm, it was the hospital, and the nurse had tried phoning my brother but got no answer (he doesn’t always hear his phone going off at night). She said that Mum had taken a turn for the worse and that I should get to the hospital as soon as possible. Being over 150 miles away and due to start a Judo course in a couple of hours, I didn’t know what to do. Having spoken to my brother, he said carry on as normal and he would keep me informed. By 8am I was so agitated, Linda took control of the situation and we packed up to come home. She telephoned my Judo instructor who was also attending the course and advised him of the situation, he said he would let the course organisers know that we would not be attending. We handed the keys back to the chalet owner (explaining the situation to her as briefly as possible) and set off for the hospital, by this time it was about 9.20am.
Mum passed away just before midday, I arrived about ten minutes later, and was absolutely devastated…………

Sleeping with CPAP isn’t the easiest thing in the world and takes some getting used to. When you have so many thoughts bounding around inside your head, what if… what now… what to do next… sleep is almost a luxury and virtually impossible!

The rest of the week went past at blistering speed as there was so much to do. If you have ever organised a funeral, at short notice (Friday 2nd June 2006) you will know how much there is to do. This was made necessary as my brother was due to fly to the USA on Monday 5th June 2006, and Mum had insisted when she was in hospital that we have our holidays and try and carry on as normal, so we felt he should still go.
One of the hardest things for me was registering the death. For one thing, it was in Northampton, for another, when I arrived I was asked if I had made an appointment!!! In my already distressed state, Linda took over and explained that the funeral was Friday, today was Wednesday, and we weren’t leaving without a death certificate! At this, the clerk managed to find a registrar who was free almost instantly (strange that!).

Having to repeat all Mum’s details and the events surrounding her death was not easy, even when it was so fresh in my mind. One of the simplest questions is also one of the hardest to answer, “What is your relationship to the deceased?” and this really brings it home that they are no longer there.

Friday 2nd June 2006. The day of the funeral was a bit of a blur, I didn’t drink any alcohol (I tend to avoid alcohol these days as it diminishes the good work done by the CPAP machine) but still felt slightly escaped from my surroundings, seeing people and talking to them but not really conscious of doing so, or of what I was saying, if that makes any sense…

My strongest memory of the funeral was the playing of Dvorák’s New World Symphony, second movement, Mum’s favourite piece of music (more commonly known as “coming home” or the hovis theme). I still keep a copy of this in my car so that I can play it whenever I think of her.

Tuesday 5th September 2006. Mum’s internment, another difficult day……
At some point in September My Brother, Sister and I, decided on a headstone and the wording to go on it.