The Heartbreak kid

Have you ever noticed how, when things get really bad, sometimes it’s not the blows that knock you down? Sometimes you get hit, and hit, and hit, and stay standing, right up until someone asks if you’re ok – and then BAM! You’re down for the count.

This morning I got a package from a dear friend in Queensland. I shared a pattern on Facebook ages ago for crocheted sandals made out of thongs, and she had made me some. It made me a little teary. I’m very lucky in my friends. I had a visit to Mum planned, so I resolved to hug the thought of those sandals to me, to remind me to smile.

I knew when I called Mum this morning that it was a bad day. She couldn’t hold a thought even for a moment. Meaning eluded her. She wasn’t sure who I was, or what was happening. Her conversation, usually fragmented, was in a lot more pieces than usual.

I think I’ve already lost you
I think you’re already gone
I think I’m finally scared now
You think I’m weak
I think you’re wrong

“If you’re gone” Matchbox Twenty

When we left her house Mum pointed at the possum box in the tree and asked me if I knew who had put it there. “It was my Dad,” she said proudly. “It was a long time ago but he must have been quite old when he did it.”

Her dad died twenty years before Mum and Dad moved into that house. I’m pretty sure he never installed a possum box in his life, and he certainly didn’t install that one. On the way to the cafe she pointed to a bench that she keeps telling me her Dad used to sit on, but this time she had an elaborate story about how he helped them move in and then sat on that bench. It’s as though she’s papering over the holes in her memory with stories that never happened.

We had lunch. I ordered something I thought she would like, because she couldn’t make sense of the menu. Chris and Bruce, the cafe owners, know what she has anyway. They treat her like royalty – which is nothing unusual, it’s the way they treat all their customers. She kept fretting about whether she had enough money to pay for lunch. I showed her some photos and she remembered some people but not others. She must have told me 15 times over a half hour period that she had a dog called Toby when she was little. I smiled, nodded, died a little inside, and kept it together.

Then, when I went to pay, Chris quietly told me that Mum has been coming in every Sunday for some weeks now, looking to buy a paper and some chocolate. Chris was so sweet about it, he said he just takes her next door, to the general store, and makes sure she’s ok, but he and Bruce wanted me to know. We talked for a bit about how Mum is deteriorating, but because she won’t see a doctor or let anyone into the house there’s nothing we can do. Bruce said “as long as she’s happy and not distressed.” But of course she is distressed quite a lot of the time. I think she only ventures out of the house when she’s in a positive frame of mind.

And then Bruce said “and as long as she’s not causing you girls distress” and it broke me. It absolutely broke me. I joked that that was a much longer conversation that would need something stronger than tea, but when I got back to the table I had tears rolling down my cheeks.

Where do I even start? How can I tell him about the hysterical phone calls demanding to know where Dad is? How can I tell him about the tears when she is looking for her parents? How can I tell him about the way my heart shatters when she doesn’t know me? Or about the times she gets angry over things I can’t understand? How can I explain how desperately we want to get her help? How helpless and alone we feel, unable to access any support services, because we can’t even get her assessed? (We really can’t. Believe me. We have exhausted every avenue. Don’t even go there.)

Things with Mum are so hard. Others only see a fraction of the story, but there are so many people who look out for her, and for us. There is so much kindness woven through our trauma. So many hands waiting to catch us each time we stumble. But here and now, today, I’m not sure I can keep doing this. How many pieces can get torn out of your heart before it stops beating?

I’ll be over here, clinging to my slippers.

Do you know where you’re going to?

My sister, Jane, has reminded me twice this week that today is 4 years since my Dad’s death. The first time I quickly forgot. Maybe that was the chaos of term 2, exam & assignment marking, report writing, plus fighting off the inevitable end of term virus. Or maybe I didn’t want to remember.

Today, though, I had just finished my reports when Jane reminded me again, and then in one of those quirky twists of fate that suggests that my music player has a hidden agenda, my shuffled music started playing a Tina Arena song that we listened to the day Dad died. We were on the way to pick up Mum, it was a long drive, and these songs are burned into my brain.

I found myself singing along, and then playing it over and over again. Of course, singing with a virus is a risky affair, and I should probably apologise to my family and the neighbours for the raucous squeakings that issued from my throat, but I couldn’t help myself. The song was bubbling up from my heart, and it had to come out.

Do you know where you’re going to?
Do you like the things that life is showing you
Where are you going to? Do you know?

Do you get what you’re hoping for
When you look behind you, there’s no open door
What are you hoping for? Do you know?

The day my Dad died was pretty tough. We had been expecting it for years, but its arrival was nonetheless a deeply shocking blow. I had been flinching at every unexpected phone call for some time, but the call when it actually came knocked me flat.

God knows we had a complicated relationship, my Dad and I, and the last few years of his life took a relationship with cracks and turned those hairline fractures into ravines that neither of us could ever quite cross. It has taken me four years to start to see past the anger and devastation of that time through to the love and laughter that we used to share.

I hoped for his death. Longed for it. Not because I was angry, but because he was in so much pain. Insisting daily that he was fit as a fiddle and expecting to live forever, any fool could see he was dying by degrees. His cancer was consuming him, and deny it though he did, in the end it was undeniable. His death, when it came, was mercifully sudden – a heart attack in the street. The long, traumatic downward slide halted a long way from the horror that we saw in our nightmares. He was spared that, and so were we.

Now looking back at all we’ve planned
We let so many dreams just slip through our hands
Why must we wait so long before we see
How sad the answers to those questions can be

Do you know where you’re going to? Masser & Goffin

I’ll never forget that day, or the days that followed. But looking back what I find woven around every step, every phone call, every heartbeat, is the support of the people around me. I remember rushing to the only private place in my workplace – out the back with the admin staff – and receiving hugs, cups of tea, and time to breathe. I remember the dear friend who drove me home, and the hugs I received by text on the way.

I remember the messages on Facebook before the news became public, and the cards from my work friends offering food, hugs, and anything I needed. I remember the casserole on the doorstep, and the purple frilly scarf. I remember cards, flowers, and pots of orchids that still bloom from time to time in my living room.

I remember emails, phone calls, and endless hugs. I remember my car breaking down on the day of the funeral, and the kind soul who gave me a lift to work. I remember everyone who came to the funeral. Above all, I remember knowing that whichever way I turned, whenever I faltered, someone was there to catch me, hold me, and help me up.

I miss my Dad. But I remember the love.

To sleep, perchance to bounce

I didn’t think anyone would be particularly interested in my sleep medicine saga, but I wanted to write it up because that’s one of the ways I process things. So I wrote it as a really long facebook status (I know, I know, facebook is not far from public) and figured people could choose to read it or ignore it. I expected most to ignore it, and I was therefore fascinated to find that it got a lot of attention. Maybe there is a hitherto unexpected hunger out there for information on sleep disorders and doctor shopping. Or maybe my facebook friends are just weird. You decide.

For those interested in tales of bizarre sleep therapies, read on. For those who are not, I’m sure there are some cat videos further on in your feed. Move along, and whatever you do don’t make eye contact with the crazy lady.

My sleep is lousy and has been for a very long time. I went to one sleep specialist who agreed there was a pretty severe problem. He did a sleep study on me (which involves being wired up like a processor board and then told to “sleep normally” in a hospital bed) which proved that, yup, my sleep is woeful.

“Just sleep normally,” they said.

The study showed mild sleep apnoea and a whole lot of unexplained, but extraordinarily poor quality sleep. My doctor therefore declared that there was no real problem, and very helpfully suggested I lose weight. Let’s not even talk about how hard it is to diet when you are beyond exhausted. That’s only a minor issue. It turns out that sleep deprivation actually changes your blood sugar regulation making weight gain more likely.

Let’s just say that particular specialist didn’t get another visit (except in my dreams where I shouted at him a lot). What I was dealing with wasn’t the problem he was looking for (severe sleep apnoea), therefore as far as he was concerned there wasn’t a problem. This seems to be a surprisingly common attitude among specialists. “You don’t have my problem, so you don’t have any problem.”

I felt utterly defeated,and quite desperate. After doing a lot of reading, and against the advice of my specialist, I treated the mild sleep apnoea with a CPAP machine (Continuous Positive Air Pressure), which helped a lot, but didn’t quite get me over the line. The initial bounce eventually settled and I remained exhausted. Not as exhausted as I was before, but it was still dragging my quality of life way down. In despair, I slugged about feeling rotten for months. Feeling exhausted all the time is second only to being in a lot of pain all the time – I have tried both, and I really don’t recommend either!

Finally I decided to try a different specialist. I went back to my GP who didn’t know who to recommend, so we perused the list and eventually chose one for the very technical reason that he was nearby. Well. That turned out to be an extraordinarily good move. This guy listened. And cared. And talked about evidence. While the previous specialist seemed rather disconcerted by the way I turned up to our first appointment with graphs, and horrified by the way I wanted access to the data from my own sleep study, this new doctor actually seemed to find my nerdy, data-centric approach useful. After a full, frank and quite entertaining exchange of views, and a few attempts at more conventional therapies, he suggested sleep restriction – basically an attempt to persuade my body to maximise its sleep quality by restricting the amount of sleep it has access to. Not for the faint hearted!

Taking an exhausted person who is getting  around 10 hours of sleep per night and suggesting she cut back to 6.5 is a brave move – my kids were concerned it was some kind of oblique murder attempt aimed at them – but I was desperate enough to try anything. In a move that endeared my doctor to me no end, he was quite open about the fact that although it is well studied and documented for insomniacs, there is limited evidence for sleep restriction in cases like mine, where the sleep quality is poor but getting to sleep and staying asleep is not a problem. He was very clear that it was a long shot, but I figured it was worth a try. I’m a sucker for scientific honesty.

So for 2 weeks I cut back to 6.5 hours of sleep per night and went quite spectacularly mad… and then, quite suddenly, it started to work. Subjectively I was feeling a lot better, and objectively my actigraphic sleep tracker was actually showing flat spots – I was lying still! – as much as 75 minutes long. This is something I have never seen before. My usual sleep pattern has no flat spots at all. Constant movement is my theme – I sleep like a threshing machine.

Interestingly when I extended the sleep back out to 8 hours the wheels fell off, so it’s back to 7.5 for me, and maybe 7 if that’s no good. I can tinker with it from here to get it as close to perfect as possible. But there is light at the end of the tunnel. I’ve had a couple of days of bounce – and it’s been a long, long time since I have bounced. If this really works my students are in for quite a shock.

There is one chief lesson I take from this, which is that when a doctor tells you that you don’t have a problem, or that nothing can be done, you have only his or her word for it. Doctors are as fallible as the next person, and the human body is far more complex and variable than we really know how to admit. Just because one doctor is stumped, or uninterested, doesn’t mean that there is no-one out there who can help you. Finding a doctor who takes you seriously, listens, and is willing to experiment, is sometimes a challenge, but it is definitely worth the struggle.

The second chief lesson is that your health is in your hands and nobody else’s. You don’t have to do what you are told by a doctor, however eminent, and you are always entitled to a second, third, or even fourth opinion. Medical professionals may rail against “Dr Google”, but an educated patient is best equipped to participate in his or her own treatment. I don’t have medical training or specialist knowledge, but I need to understand my own condition and explore my options. A doctor who doesn’t think that’s a good idea is not someone I can work with.

The third chief lesson (I’ll come in again) is that quality sleep is the foundation of absolutely everything, and more sleep is not necessarily the answer. I was tired, so I slept more, which worsened my sleep, so I slept more (I think you can see where this is going). I needed expert advice to fix that, but I needed a good relationship with that expert to make it possible. Some relationships are never going to work, in which case you should not hesitate to move on and find one that does. It can change your whole life.

Now if you’ll excuse me, I have some bouncing to do.