Lockdown With My Family in Southsea: Day 66, The Dramas of Deafness

Local parent, researcher and writer, Maddie Wallace, continues her daily diary describing the experience first, of self-isolating, and now of being in lockdown with her children in Southsea. We’re at Day 66, and Maddie decides to reintroduce herself to her hearing aids, which she took out nine weeks ago.

Somewhere in amongst all my recent attempts to implement a healthier sleep pattern, starting the day with yoga/Pilates/physio exercises, not drinking alcohol in the week, having a warm bath before bed, going to bed earlier, and getting up with an alarm again, I also realised that I need to start wearing my hearing aids. Enough of the muddy sound, it’s time to hear things properly.

Nine weeks ago, I couldn’t stand to put them in. The noise in the house from three kids being at home all day was unbearable. I suspect a part of that was the added Covid stress. One morning I didn’t put them in in at all. And that was that. It was one more thing I didn’t have the energy to push through.

After about four weeks I noticed how severely my brain was impacted by the hearing loss again. Deafness makes you tired because your brain is spending so much energy trying to hear things properly. It’s exhausting, and limits your capacity to concentrate, think and function. It affects your speech and language processing and your memory. And I still didn’t put them back in.

My hearing loss is a rare congenital condition known affectionately as cookie bite hearing loss, because your graph shows the greatest loss in midrange frequencies. It looks like someone has taken a bite out of your audiogram reading. I was diagnosed at twenty seven and managed almost another two decades with lip reading. But the cancer treatments made the deafness significantly worse.

For three years after my hysterectomy I thought I had early onset dementia. Or a brain tumour. You always go down the cancer route when you’ve had it once. I was starting to get seriously concerned because I’d be unable to say certain words, forget the simplest things and my friends told me if I didn’t get my hearing loss seen to, they’d buy me an old fashioned ear trumpet and insist I use it around them. What? What’s that you say? had become a running joke as they tried to nudge me towards accepting I couldn’t cope without hearing aids anymore. The final kick up the backside was a camping trip in 2018 where I couldn’t interact around the campfire in the evening because I simply couldn’t hear a word anyone was saying. My friend, Welsh Laura, told me how sad it made her when I couldn’t engage in the evenings. No one wants to make Welsh Laura sad; she’s a happy, skippy, sunshine lamb from the Valleys. I booked to see the GP for a referral the next day.

This week, along with all the other constructive changes I’ve implemented, I decided to re-introduce the hearing aids. Slowly. A couple of hours the first day, building up carefully by an hour a day. When I first got my hearing aids last summer, the shortage of audiologists impacted on the advice I was given. It took over a year from referral to getting them, because Solent NHS was struggling to fill audiology departments with specialists.

The advice when I was fitted was to wear them all the time, push through the pain, allow my brain to get used to them, and keep going with as much as I could take. They were set at one level and I couldn’t even turn the volume down. As I result, I spent months getting migraines two or three times a week, until I eventually I learnt that when my ears started itching and sounds became distorted, it wasn’t because I needed to take them out and wiggle my finger in my ear as the audiologist had recommended. It was because my ears had heard enough for one day and my brain was struggling. I started to notice key signs that were in indication to take them out immediately, usually by 3pm. If one of the kids screamed, I’d have a sensory overload migraine on the spot and be incapacitated for the rest of the day. I lost count of the amount of times I had to call on my mum or friends to help with the kids because I couldn’t even stand up.

This went on for months, before I finally contacted a friend who’s had hearing aids for years. She urged me to go back and speak to audiology and told me I wasn’t being stupid, or wasting their time, and I shouldn’t keep trying to push through when doing so was debilitating me.

I went back. The new audiologist was astonished that the hearing aids were set at the highest possible volume for my hearing loss and that I couldn’t adjust this myself. She set them to the lowest starting setting I needed and then made them adjustable. The difference was immense. I went from never wearing them past 3pm to wearing them until about an hour before bedtime. They stopped hurting my ears and the migraines and sensory overload experiences stopped.

So, it was a tad foolish of me to put them in for the second day of re-introducing them – and then forget to listen to my body when it started giving me indications that enough was enough. I was busy being productive, working, reading another chapter while getting A to do some handwriting practice, having heart to hearts with Z about lockdown, life without friends and what’s in store for his upcoming adolescent brain changes. I failed to notice my ears feeling like I’d just got off a plane. I failed to notice the irritation. I failed to listen to the dull ache on the left side of my head. And then, as I was reading about the structure of the BBC and how it’s designed by those in power to support those in power, half the words on the page just disappeared.

‘Oooh. Weird,’ I thought, as a searing pain hit my head, followed immediately by nausea and an aversion to light.

I took the hearing aids straight out, but it was too late. The damage was done. The damage was so painful I spent an hour wondering if I was having a stroke. I couldn’t open my eyes to ask Dr Google though, which is a blessing in a way, because Dr Google would have told me to call an ambulance. I know this, because I checked later, once I knew for sure I was okay. It took four hours of sitting in a dark room with a silk scarf over my head, outsourcing pizza acquisition to Molly and Nina, (who thankfully stopped by on their way to Tesco to ask if I needed anything), the cooking of said pizzas to S (who insisted he couldn’t possibly cook anything we already had in the fridge), the washing up to Z, and walking the dog to H’s boyfriend and his brother.

I’m so grateful that people still help me when I’ve been a right wally. And I’m also incredibly relieved that my kids behaved themselves and I didn’t have to deal with any dramas while I was having my own. I’ll be setting an alarm for four hours tomorrow and taking them straight out when it goes off.

 

Maddie is sharing her lockdown experiences every day on S&C – you can find each day’s diary and all of Maddie’s previous articles for S&C here.

Image by Concord90 from Pixabay

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