Ups and downs

Aghhh. I had been doing so well, but it finally got to me today.

This is much easier than coping in intensive care. So much easier. In intensive care, I spent every day just coping. It took all my energy. I knew the surgeons were saying how well I was doing, but all I could do was focus on the moment in time and the next challenge before me: be it getting out of bed, bearing with an injection, having my tracheostomy suctioned, or holding out until I could press the pain relief button again.

I have never written about what it was like. It was tough. And never ending. I was woken at least every hour for the first three days. I only dozed for a few minutes at a time, perhaps 10 to 15 at most. I know because I watched the clock. It was directly in my line of sight, past the end of my bed, above the door. Throughout the day and especially throughout the night, I checked it every time I woke. And every time it was only five minutes later than when I dozed off. I remember at one point asking the nurse if my clock was broken. I just could believe that what felt like hours, interminable hours, was only minutes.

So I did the only thing I could do. I coped. I took a deep breath when I thought I might be overwhelmed. I shut off what was going on around me and pictured good times with Alannah. Cuddling in her armchair before bed. Chasing her in the sunshine when she could hardly contain her giggling. The meditation and visualisation I had tried over the last few months must have sunk in somewhere. Perhaps I am just better at it when I need to be. In any case, it helped me to get through the moments I found most invasive, most overwhelming.

It was harder than I had prepared myself for. I don’t think you can prepare yourself for pain like that. Much of the time I was on “background” and on demand pain medication, a low level of fentanyl through my IV drip and a hand control with a green button that I could press every five minutes for an extra dose. The fentanyl didn’t agree with me. It made me nauseous, so much so that I vomited. Twice. They gave anti-nausea meds, but eventually they had to stop the feeding through the nasal gastric tube for 24 hours because it seemed I couldn’t stomach both the fentanyl and the feeding. I think they also tried removing the background fentanyl, but my pain levels were too high. In those first few days, they kept balancing and rebalancing to find levels of feeding and pain relief I could handle.

Nor can you prepare yourself for the invasiveness of it all, as lovely as the nurses were. And they were lovely. They called me darling, chatted to me, soothed and comforted me. They washed me too. It was quite an operation taking two nurses and a porter. Two of them to roll me on my side, one holding my tracheostomy in place, while the third wiped me down with a warm cloth and changed the bed sheets. And then again on my other side.

And of course there was the discomfort. Between the neck drains leaking onto dressings on my left shoulder, the central lines under my right collar bone, the tracheostomy tube through my neck, the nasal gastric tube, the arterial line in my right wrist, the urinary catheter, and the cast and drain in my left leg, I could hardly move, let alone get comfortable.

But I digress. What I wanted to say was that I coped. Because I had to. Because each day it got better. Because I knew it was only for a short time, for a matter of days.

What I’m facing now is easier and harder. Easier because I am in far less pain, I am sleeping, I can breathe comfortably, I can move about, I can see Alannah, I can hold Alannah. Harder because it seems never-ending. Harder because soups and smoothies are unsatisfying and monotonous after a while. Harder because I can do a lot, but I need Darren’s help to shower and carry anything. Harder because I can’t comfort Alannah. When she’s upset, she wants a proper cuddle from her daddy. I do understand and I love how close they are, but I wish I could comfort her like I used to.

So I felt a little down today. It happens. Darren took us out for a little bit of sunshine and that helped. We’ll get out again tomorrow.

Speaking of Darren, he is home from his night out with the boys. It’s way past my bed time. Good night.



  1. You have endured so much any wonder some days you’ll tire of the effort and things will feel worse for a while but then you’ll recharge your batteries with the aid of your quilt and manage to kick along a bit longer. I admire your courage.

  2. You did not ask to be a trailblazer or a valiant leader in survival, but you are there and doing an incredible job. If only the wishes and prayers of others could make it better for you. Please know that there are many of us thinking of you and your sweet family.


  3. You need the downs to make the ups ups. Keep on keeping on!

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