Blooming in the storm

The second pacemaker surgery went well, and the leads are back in place. As of Friday last week, the pain in my chest was almost gone, as long as I moved carefully, didn’t use my arm too much, and was gentle with the pacemaker site.

But on Saturday, I sat up in bed to eat lunch, and there was an almighty tearing sensation in my chest. Excruciating pain. Panicked thoughts: What just happened? Did I just tear out a lead? Oh please, anything but a lead! The pain was overwhelming, and it was a struggle to breathe. Cue a hurried car trip to the local hospital (hubby driving). They don’t have the equipment to interrogate my pacemaker, like the bigger hospital thirty five minutes away does. But I honestly didn’t know if I’d make it to the bigger hospital, so we headed for the nearest place. 

I have a high pain threshold – I’m no ‘delicate flower’ or ‘simpering maiden’. But by the time the nurse had triaged me through, I was at 10/10 pain, sobbing, clutching my chest, gritting my teeth, and hyperventilating. Unfortunately – in our small emergency department, there’s only one doctor on at a time…and he was performing emergency surgery on someone. The nurses decided if the doctor couldn’t see me yet, he could at least order my pain relief (thank you God for nurses!) So they organised some Fentanyl for me (pretty much the only pain med I’m not allergic to, apart from Panadol, which obviously wouldn’t be enough for the level of pain I was in). But Fentanyl has a short life, and the doctor was performing emergency surgery for SIX HOURS!! The nurses would come and top me up when they could, but they were ridiculously busy, running back and forth between the doctor and all the different patients, telling him about different cases and getting orders, all while the doctor was stitching someone up!

They took an ECG when I went in, and it was pretty normal. An ECG wouldn’t show if the pacemaker was working or not though, because mine doesn’t pace me all the time – it only kicks in when my heart gets too low or stops (neither of which is likely to happen when I’m pumped full of adrenaline from excruciating pain). At hour 4 or 5, a radiologist turned up at the hospital to take some X-rays. Turns out the leads were still perfectly placed (big sigh of relief).

At hour 6, the doctor finished stitching up his patient, and made his way to my curtained corner. He did an ultrasound…sort of. There wasn’t any gel, so he had to use tiny sachets of personal lubricant that they usually give suppositories with. And the only ultrasound probe they had was an abdominal one – which isn’t really suited for looking at chests. But he gave it a go, and decided I’d torn a muscle in my chest somehow, and had a pocket of blood/fluid in there. He prescribed a course of antibiotics, since I’d had surgery so recently, and the wound above my heart wasn’t fully healed. I hate antibiotics, because they mess up my digestion for ages, but a heart infection isn’t something to gamble with, so I agreed and took them.

A week later, I finished my course of antibiotics, my chest was feeling much better, and I headed to my local GP for follow-up. He ordered a follow-up ultrasound…which showed no evidence of muscle tearing or a pocket of fluid. So… no need for that week of antibiotics then… great.

But wait…if there was no torn muscle and pocket of fluid…what actually happened? What was it that tore? I think some scar tissue from the two surgeries had joined muscles/cartilage/something together that wasn’t supposed to be connected (or maybe they were even mistakenly stitched together). Once that connection had torn, that would show up as normal on an ultrasound, because they were never meant to be joined in the first place! But there really isn’t any way to know what happened for sure. All I know is that I’ve had a lot of injuries, procedures and surgeries, and the pain I was in on Saturday tied for first place on the list of “worst pain I’ve ever felt”.

A week later, I’m still recovering. Physically, the pain has settled, and I’m back to being able to gently use my arm. Emotionally… I think that will take a while longer. I genuinely scared both my husband and myself. The panicked trip to the hospital… the level of pain I was in… it broke a small part of me.

It also fanned into flame a fear I’ve been resolutely trying to extinguish. Why did the last pacemaker leads come out? How do I know these ones won’t come out too? Every time I use my arm (even gently, in the way encouraged by the doctor), something inside me says: You probably just pulled the lead out, doing that. Whenever I remind myself that the x-rays on Saturday showed perfectly placed leads, that voice whispers: That was a week ago. You could have dislodged them since then. You probably have.

There’s no way to know without an x-ray. And I’m not going to ask my doctor for a chest x-ray every week, ‘just to check the leads are still in’.
But I’m sick of constantly sparring with that stupid voice, sick of being anxious about something I can’t definitively put to rest. And I’m SICK OF BEING IN BED!

“What day is it today?” I ask my husband for the umpteenth time.

Between the second surgery and Saturday’s drama, I’ve been in bed for weeks. Even now that the pain in my chest has subsided, my body is still determined that I stay horizontal. Being upright causes my vision to darken: the room starts to spin violently, and getting enough air becomes a struggle. All my progress with food has been set back because of the antibiotics, and I’m back to living off rice cereal until the probiotics can kick my digestive system back into gear. I’m stuck in bed, and the days are blurring together into a shapeless fog.

*    *    *

I grew some flowers though. Actually, that’s probably taking a bit more credit than I deserve. What I really did was put a bulb in a pot, about six months ago, and cover it with dirt. We’ve had a lot of storms recently, and the rain has encouraged the bulb to poke its sleepy head out of the dirt, and burst into beautiful big pink flowers. It’s kind of odd…we’ve had beautiful weather for months, and this little bulb has just sat quietly, hiding in the dirt, no matter how much I watered it. But a few weeks of thunder and lighting, some heavy rain, even the odd hailstone, and all of a sudden this bulb has popped up and waved, “Here I am!”

I dislike clichés about storms being opportunities to “learn to dance in the rain”. That’s a nice outlook for short term struggles, but my chronic illness isn’t going anywhere, and after a while, you get sick of the rain. Instead of wanting to dance, you just feel wet and cold and miserable, and desperately wish you could go inside. But, despite my dislike of clichés… I do want to be like that bulb. Instead of hiding in the dirt during the storm, I want to burst into big, beautiful flowers…I’m just still figuring out what that looks like for me. I know the first step is climbing out of this hole – and that means a combination of mindfulness, self care, and ‘outwardness’ is on the agenda.

Mindfulness is practising being aware of your emotions and thoughts, without letting them rule you. Some people use meditation, but I just pick a quiet moment to think about what I’m thinking and feeling, and then choose what I’d prefer to focus on (like the long list of things that I’m thankful for, or the eternal perspective of what I’m going through). Self care (for me) is getting outside and feeling the grass and breathing the fresh air (even if just for a few minutes) and doing creative things that I enjoy (like blogging!) even while stuck in bed. And ‘outwardness’ (for lack of a better word) is about getting my focus off myself, and instead using my spoons to support and encourage others.

So… here goes.
Here’s to blooming in the storm.

xx S.

What do you do to help yourself heal emotionally after a scary chronic illness episode? How do you spar with that little voice of anxiety that lives deep inside of you? What strategies do you use to cope emotionally when you’re stuck in bed for long periods of time?