And now for something completely different…

You’d have thought that after two and a half years of hospital appointments and treatment that I’d be glad to never set foot voluntarily in a clinic again.

Well, you’d be wrong. It seems I can’t get enough of it!

Several weeks ago saw me attending a completely different clinic, at a different hospital campus, for a completely different reason than myeloma…

Throughout my adult life, well maybe the past 25 years, I’ve been accused of snoring. When I say accused, I don’t use that word lightly. People have gotten angry and been really mean to me because of a physical habit that I not only can’t do much about, but am not even aware of when I’m doing it.

There was one occasion when I was sharing a room in a Greek pension with a friend. When I awoke in the morning, she was not in the other bed. Not only was she gone, but so was the mattress! In the middle of the night, she had dragged the mattress off the bed and out onto the balcony to sleep out there. Apparently the noise from people in the street was not as bad as the noise from me in the room. The following day we were stuck in the back of a car together, but she was so angry with me, she barely spoke to me all day. It felt very unfair.

‘Laugh and the world laughs with you: Snore and you sleep alone!’

I sometimes think they’re all making it up. In fact, in my more flippant moments, I’ve been known to completely deny snoring. As far as I’m concerned, I go to sleep, the hours pass, then I wake up. What’s the big deal?

However, I have also slept in rooms with family members (who shall remain nameless), whose harsh erratic snoring kept me awake, despite gentle and not-so-gentle nudging, rolling, prodding and even whispering “you’re snoring.”

It isn’t the loud, deep, rhythmic breathing, the likes of which I’ve experienced with bed partners and even my dog in the past, the likes of which I find quite comforting, especially from a dog! No, if my family’s snoring is anything to go by (which is quite likely, given how physically similar we are), my own contribution probably sounds more like someone being half strangled, half drowned. Hmmm…

In recent times, I have been on holiday with a couple of different friends, with whom I’ve shared a room, sometimes a bed. They have been very kind and have managed to sleep through my nocturnal performance with the use of ear plugs. But it does seem unfair that they are inconvenienced because of me.

So I figured it might be helpful if I could eradicate the nasty habit, especially as I’d like to holiday with each of them in the future. Even if I could lessen it to a more harmonious rhythm, which is what I’ve experienced from each of them, through which I have no problem sleeping, it would be a huge improvement.

nasal_stripSome years ago, when my then-partner complained about my snoring (even through a solid wall!), I tried using anti-snoring nasal strips. Sadly, they had absolutely no effect whatsoever. Neither did they make me look quite as blissful in my sleep as this photo!

IMG_1204I heard about sleep apnoea a few years ago, which is “stopping or pausing breathing during sleep. It is caused when the muscles and soft tissues in the throat relax and collapse sufficiently to cause a total blockage of the airway.” Apnoea is when the breathing actually stops for a few seconds, whereas hypopnoea is when the breathing is abnormally shallow.

According to the NHS Choices website: “Most people with Obstructive Sleep Apnoea [OSA] snore loudly. Their breathing may be noisy and laboured and it is often interrupted by gasping and snorting with each episode of apnoea. The repeated interruptions to sleep caused by OSA can make the person feel very tired during the day. A person with OSA will usually have no memory of breathlessness, so they are often unaware that they are not getting a proper night’s sleep.

Eureka! I wish I’d known about this before! It might explain a lifelong grogginess on waking, no matter how much sleep I’ve had. Ha! And I just thought I wasn’t a morning person!

But the plot thickens… More recently, I found out that three of my close family members have all been diagnosed with sleep apnoea. even my untutored detective skills tell me that there might just be some correlation between their diagnoses and my erstwhile room-mates’ comments. I am easily fatigued and despite what my body has been through in the past couple of years, I wonder if disturbed sleep might be adding to the cause? Maybe now is the time to investigate…

While I was seeing her about something else, I asked my lovely GP, Dr Carolyn if she knew of any way to deal effectively with snoring. She said firstly, that in her house they had not found any of the over-the-counter anti-snoring products effective. She knows, as it’s her husband who snores… and she who suffers!

I also mentioned my close family member who has sleep apnoea and asked if it was likely that I might too? At that point, I didn’t know about the other two people in my family. That information only came out when I began to talk about my own investigation.

Dr Carolyn suggested making an appointment with a Sleep Medicine consultant and was able to book it there and then on a computerised system. Finally, the NHS is catching up with modern technology!

NHS Treatment CentreSo, off I trotted to the new, glossy NHS Treatment Centre in Nottingham, built and managed in partnership with a private “employee co-owned partnership” company. I’m not sure how I feel about that politically, but as a user, it was smart, clean, light and attractive, its public spaces resembling a modern conference centre more than a clinic environment.

I saw Dr William Kinnear, who asked me a few questions, had me complete a tick box questionnaire, but didn’t give me time to discuss my concerns and anxieties about the possibility of a sleep apnoea diagnosis. He said there would be time for that later, but first I would need to be tested. Oh joy… after two and half years of needles, this test only required me to sleep!

oximetry-300x200I was passed into the competent hands of a technician, who gave me a small oximetry machine (to monitor blood saturation levels), whose probe would be around my index finger while I was asleep that night at home, while the monitor would sit on my wrist like a watch.

Anyone who has spent time in hospital will be familiar with the probe clipped onto a finger when they take observations, usually attached to the blood pressure machine. It doesn’t hurt and sleeping with it on was no problem. I just had to return it the following day for them to download the data of my oxygen intake during the night.

A week or so later, very promptly I thought, I received a letter inviting me to return to clinic to be fitted with another piece of equipment to monitor my sleep at home again. In the letter, they asked me to wear a t-shirt in which I could sleep, that they could fit the testing equipment on top of while I was in clinic.

I didn’t see a doctor this time, but a physiologist/technician. I asked about the results of the oximetry test. He said the results were inconclusive in terms of diagnosing sleep apnoea, but sufficiently irregular to warrant a further test.

IMG_1195He showed me this graph while we talked, where you can see spikes in my pulse rate (in blue) and dips in my oxygen saturation levels (in red). When I asked for a copy, he told me that for data protection reasons, they’re not allowed to give a copy to patients. (I’d say ‘arse protection’ reasons, but don’t get me started!)

However, he had the decency to look embarrassed about the statement and he kindly, complicitly turned his metaphorical back while I took a photo of the graph with my iPhone. In actual fact, he held it up for me to get a decent photo.

I got the feeling that if I hadn’t asked about the test, no one would have explained anything to me. The process felt like I was just one more on a long conveyor belt (or bed?) of snoring patients. That’s not to say that anyone was impolite or disrespectful. In fact the technician was friendly and seemed happy to explain once I asked. It was just such a very different environment from my nice cosy Haematology department (aka Cheers!).

I hadn’t realised quite how much equipment would be involved or how gadgeted-up I would be. There was a strap across my chest, another across my abdomen and the monitoring device was secured right slap bang in the middle, at my waist. By chance, I had chosen to wear a light summery dress over the required t-shirt, for which I was very glad, as it meant that the bulk of gadgetry was not visible to passersby.

suicide-bomberjames bond gadgetAll wired up I felt like a 1970’s James Bond. But, as we’re now in the 2010’s, as I walked through the automatic doors of the building, I did wonder if I passed through airport security, might I be mistaken for a suicide bomber? Call me nostalgic, but I prefer the 70’s image.

Despite having so much of the kit already strapped on to me, it was amazing how much more I had to do before going to bed…

IMG_1197

First, there were ECG-type electrodes to attach to the inside of each calf, plus one more on my hip. All of them had to be kept in place with a liberal application of surgical tape.

Then there was tubing in each nostril with an extra bit, looking like a tiny elephant’s trunk, that hovered above my mouth. The tubing was kept in place over my ears and around the back of my head with more surgical tape on my cheeks.

Every ‘accessory’ had to be hooked up to the central monitoring unit with a wire, including another oximeter on my finger again.

I can hear the murmurs now… “How attractive! What a catch!”

IMG_1201Fortunately, despite the huge potential for being uncomfortable, becoming entangled or wires coming loose, I slept well and everything was still attached the next morning. I had to take all the gadgetry back to clinic, this time in its cute little packed-lunch-style bag rather than on my person. Some other poor soul would be getting all trussed up the following night, while I would be hearing from the clinic in due course.

To be continued…

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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10 Responses to And now for something completely different…

  1. Simon Hancox says:

    Nice blog Jet, I wish you well with this. As you know, I had an operation, two minor incisions at the same time, which certainly helped me, and Annabel! Not 100% but it’s lots better x

    Like

  2. Any chance of getting it sorted by next weekend when I’ll be sharing a tent with you??!! 👃👃💤💤💤

    Like

    • Jet Black says:

      Oh Wendy, I’m sorry to say that your ear plugs may be needed again for camping, but maybe not for future trips. All will become apparent in the follow-up post.

      Like

  3. Wow! What a performance. Hopefully it will all help, though, and you will start snoring lightly and rhythmically to the delight of all! xx

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  4. SopranoOut says:

    Wow! I’m on the edge of my seat waiting for the next installment!

    Like

  5. Pingback: The joys of CPAP | jet black living…

  6. Pingback: The sleep clinic chronicles continue… | jet black living…

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