Weeknote 25: Ramsay Hunt Syndrome part 2

As I write this, I’m entering into my third or fourth week of Ramsay Hunt Syndrome. Week 4 if I’m counting from the start of the pain, week 3 if I’m counting from the start of the facial palsy.

I got a nice response to my last weeknote, and god knows I need things to fill my time at the moment, so I’m going to keep recording my progress here, when I can.

Physical progress

I’m feeling different this week—better in some ways and worse in others.

I’ve definitely got more energy now. I’ve been doing some gentle yoga and going for slow 90-minute walks in the local countryside.

I’ve got some movement back in the left half of my face. I can make a dimple in my cheek, and a crease under my eye. (God bless that sweet under eye crease—the first thing I will do when all of this is over is solemnly vow never to buy anti-wrinkle cream again!)

I can fake a small smile and it looks symmetrical, although if you’re looking closely you’ll see that my left eye looks larger than my right. The smile doesn’t quite reach that far.

When I smile for real, the weakness of the left half gives over to the strength of the right, and my face pulls into a crude half-grin, which makes me self-conscious enough to stop smiling. I miss smiling unreservedly.

The pain has been quite bad over the past week—as bad as the first week which, until now, I’ve ranked as the worst so far. I would keep waking up in the small hours with these mean, sharp little pains driving into my ear, or my eye, or the back of my skull. Sometimes I’d change position and they quieten down. Other times I’d have to get up and take painkillers, and then I’d just be awake for the day. It seems to have settled again the past day or 2.

The left side of my mouth and tongue are covered in painful ulcers caused, presumably, by biting into my paralysed cheek when I’m eating. Eating is getting easier each day, but perhaps it’s leading me to be overconfident with food that requires more chewing than I’m ready for yet. Time to retreat back into my yoghurt and mashed potato comfort zone!

I’ve started reducing my steroids now. I was on 50mg a day, and I’m tapering off slowly, reducing by 10mg every 3 days. I’m nervous about my symptoms worsening as I come off them, but I’m on day 5 now and I’m feeling pretty good.

How I’m spending my time

I’ve been gradually increasing my activity levels. It reached the stage where lying down for 90% of the day no longer feels necessary or helpful.

So I’ve taken the same approach to activity as I have to food: little and often.

I’ve been reading a lot. Currently I’m reading a spy novel called Slow Horses by Mick Herron, and listening to the audiobook of Mo Gawdat’s Solve For Happy, which has been a huge comfort to me through the past few weeks.

My friend Anna kindly sent me Rebecca Solnit’s A Field Guide to Getting Lost, and Bernadine Evaristo’s Girl, Woman Other, one of which I will pick up next.

I’m learning how to properly care for my houseplants and the plants in my garden. I’m finally abandoning my one-size-fits-all approach to plantcare (watering sporadically, when I remember) in favour of a more intentional routine. I’m taking the time to learn their names and their needs, how much light they like, whether they need food, when to repot them and how much to water them.

Years ago I worked as a researcher for a gardening magazine. It was a lovely job, actually. I spent a lot of my time attending press events and trade shows in beautiful gardens, and a lot of what I learned then is coming back to me now. There’s something so reassuring and soothing about gardens and gardening—the act of nurturing another living thing when you’re feeling vulnerable is a good way to access a sense of control again.

And I’m walking, when I can. I’m supposed to be shielding for now, which I think means staying home all the time. But I’m also considering my mental health, and a short, careful and quiet walk in the sunshine whilst listening to a podcast pays handsome dividends which I deem worth the risk.

What I’m learning

Self-awareness doesn’t stop ugly feelings

Some of my feelings during this time have felt really ugly—self-pitying and entitled.

I’m not really anxious anymore. The anxiety has given way to frustration, impatience, and boredom.

Last week, I was far too anxious and upset to even imagine feeling bored, or frustrated, or contemplative. Last week I told myself that if I felt bored, I’d know I was doing better—that feeling bored would be a blessing and I would make myself feel grateful for it.

But here it is and I haven’t felt as overwhelmed with gratitude as I anticipated. I have felt bratty and spoilt and petulant. I haven’t cared that I’ve been recovering quickly. I’ve felt angry to be recovering at all. I’ve just wanted to be recovered, right now.

The self-compassionate angel on my shoulder tells me to go easy; that this is just human nature. But sometimes human nature feels like such a flaw. The way we can narrow our focus and our desires in the face of extreme fear, wanting only to not feel scared again; wanting only our health, our friends, and our family. And then the minute it lets up and we feel safe again, our baseline resets and we’re back to I want, I want, I want.

Even though I’ve been self-aware enough to see it happening, I haven’t been able to rush myself out of it.

I’m concluding that sometimes feelings just need to be felt.

Health is not an equaliser

In between some large helpings of self-pity, I’ve been thinking a lot about how privilege has played a part in my experience here.

I don't believe it's a coincidence that I'm an abled, neurotypical, financially secure white woman and I’ve been able to:

  • discuss my symptoms with medical professionals, comfortable in the knowledge that I’ll be taken seriously and treated
  • seek additional advice from a doctor in my family
  • find and understand some pretty dense health content about my condition
  • pay for a private facial physiotherapy session
  • buy all the medication and rehabilitation equipment I’ve needed

These things are not just nice-to-haves. Together, they mean I’ve been able to take the necessary steps and medication in the critical time window that gives me a chance of a full recovery.

Health is often talked about an equaliser. One of the most oft-used and infuriating platitudes of the current global health crisis has been that “we’re all in this together”. But it completely ignores the rife inequalities which are only exacerbated now.

The treatment a person receives, and therefore the outcome they have, depends too heavily on their circumstances.

If you are reading this and you know of any charities or initiatives that provide healthcare to marginalised people, please let me know. I would like to support them.

I’m already grateful this happened

As strange as it is to say, as hard as this has been, I don’t wish it didn’t happen. I’d even go as far as to say that I’m glad it did.

I can look back over my life and see that the periods in which I learned and grew the most were the ones in which I struggled, and that’s already proving itself to be true here.

I’ve learned that my ability to cope with pain, suffering and uncertainty is much greater than I ever gave myself credit for.

I’ve learned how kind people can be, and how much kindness matters. I’ve had hot meals dropped off by our neighbours and our family, flowers and cards galore through the letterbox, countless kind messages and well wishes. At a time when I could feel so alone, I feel so supported.

And there’s something really freeing about letting go of control, and having some of your choices taken away. In a crisis, we have permission to refocus and discard the unnecessary and the unhelpful.

Things that felt so essential to my existence not 3 weeks ago just fell away overnight—my job, the pace I was working at, the money I was earning, my sense of control, any illusion I had about having certainty in the future, the full use of my face, I could go on.

I don’t feel consistently positive about the situation by any stretch, but by having some of those plates I was spinning smash, I can see which ones I truly need to keep in the air.

There aren’t very many, and it turns out that’s actually quite a lovely thing.