Sept-Oct 16: The curse of the invisible illness

Tinnitus Ritcher scale: Daytime progress has plateaued, 5.75. However the evening’s constant roaring has started to reduce to 6.8. Hooray! Running water, washing up & brushing teeth are still painful triggers but who cares when evenings are getting easier.

I return from my two week holiday feeling rejuvenated and I’m greeted with a chorus of compliments: “You look stunning”, “radiant”, “you don’t look unwell”.

I should look healthy as I’m sun-kissed and have eaten nothing except over-cooked brown rice and lentils for nine months. For the first time in my life I’d give anything to be 5lbs heavier, and not live with a form of Chinese water torture in my head.

My physical appearance is deceptive and I now find myself struggling to manage expectations (both mine and those of others) of my capabilities.

I’m sure anyone with an invisible illness will be able to empathise with the pitfalls I’ve experienced.

A soggy cardboard box

I keep using a bizarre analogy to help people understand my fragile state.

Before the holiday I was a quivering, broken mess like a pile of jelly on the floor. I’ve now progressed to being like a rain-soaked cardboard box. I have a shape and resemble something sturdy but the slightest pressure, even the weight of a butterfly, and I’ll fall apart.

Getting the balance right

My new strength makes it increasingly hard to justify my reclusive behaviour, to myself and to others. I’m also discovering there’s a fine line between enjoying myself and over-doing it.

I tentatively test the water by having a rare evening out in a deserted hotel bar and meet friends in slightly noisier cafes, i.e with more than one other customer.

Things go well and I enjoy myself but afterwards I’m left drained with tinnitus blaring out. Is it worth the effort?

It must be exasperating for friends as there’s no consistency. One week I arrange meeting up in a nicer, livelier cafe but then, a week later, I act like they’re trying to kill me when they suggest going back to exactly the same café.

It’s like my body visits a healthier place and, the next day, retreats back to feeling awful. It takes weeks before I occupy that healthier place again. It means I can’t plan ahead or take anything for granted.

Increased expectations

I chair a meeting at work.

Yes, you read that right. I managed to sit upright, concentrate and be authoritative for two whole hours. I could hear everything being said and I didn’t run out of the room in pain when someone coughed.

It’s a huge achievement. Not only do I want my manager to congratulate me, I want her to treat me like a toddler who’s taken her first steps. I want to be showered with love and praise.

Of course that doesn’t happen. She’s seen me chair dozens of meetings and takes it in her stride. All that’s happened is the bar of my capabilities has been raised.

My reward for doing so well? I have to chair an interview panel the following week and give a presentation the week after.

Arrgh!!!

My own culpability

It’s absurd but I’m actually contributing to the curse of the invisible illness.

I keep buying new clothes, and they’re very stylish. I can’t help myself. I run into H&M, Marks and Sparks and charity shops and come out with loads of random garments.

The loud music and the sound of other customers means I can only be in the shop for 10 minutes so it forces me to make snap decisions about whether or not I look good in an outfit.

New jeans, coats, shoes and skirts. I’ve never owned so many clothes. I even buy a green fedora hat.

My friend Amy compares it to the Blitz spirit. In times of adversity women tend to dress up. Amidst the shortages of the Second World War they drew stocking lines on to their legs. In global recessions, lipstick sales soar. When living with tinnitus, I buy a hat.

Managing relationships

I’ve heard dozens of stories about the devastating effect tinnitus and hyperacusis has on relationships, some even end in divorce.

It’s easy to understand why. Without any visible symptoms, partners become frustrated by a sufferer’s strange, reclusive behaviour. However, for the sufferer, even the sound of their loved one’s voice creates an invisible torture chamber in their head and they push them away to limit the pain.

A beloved relative is angry with me. He doesn’t like how I’ve handled things this year and, in true family style, this unlocks lots of other issues between us. Tensions boil over in September and we don’t see or speak to each other for nearly a year. It breaks my heart.

Friends have stopped calling or texting me. I no longer receive get-well cards or invites to social events. My social circle has reduced to a few relatives and 3-4 very loyal friends. I can’t help wondering if I’m missed.

Would the response be the same if I was hospitalized for months after a horrific car accident, if I were undergoing the hell of chemotherapy or if I wasn’t wearing my ridiculous new hat?

My life is unravelling

The holiday has undoubtedly made me stronger but it feels like my life is unravelling. I used to take pride in my job but now I can barely get through a day. The relationships I thought were strong are in tatters. I can’t listen to music, take a shower or be in the same room as two people laughing. This is no way to live life.

I just have to trust that this is yet another miserable stage in my recovery and, as my strength improves, I will be able to take life in my stride again.

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