Myasthenia stole my smile

For the first time I noticed that when I smiled, my mouth didn’t smile with me. 

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The end of my first week in hospital came around. I thought back to when I left work the previous week, telling my colleagues I hoped I’d see them in a few days. I’d grossly underestimated the severity of my health crisis.

During consultant rounds on Friday, one of my neuros said that while they wanted to keep me in over the weekend to see whether I got stronger or not, he thought it would be a great idea for me to pop home for a short while. 

I was beyond delighted. More than anything, I wanted to see my cats. The poor old things were bereft without me. One hadn’t been eating much. The other, rather senile cat (much like my lovelies in hospital), had even stopped wandering the house wailing in search of me.

The nurse also told me my cannula had to come out, as my CT scan wasn’t going to happen until the following week. I was extremely relieved, the latest one had been inserted into my arm because the veins in my hands kept collapsing, and was quite painful. It had given me a lot of trouble during the previous night. I’d also been having blood taken from my other arm daily, and anti clotting injections in my stomach every evening mean I had bruises on top of impressive bruises!

Settling into Friday evening and anticipating a visit home the next day, we were listening to the radio. On came ‘Insomnia’ by Faithless. I giggled, amused, and half wondered if it might subliminally give my rebellious lovelies ideas for more midnight shenanigans!

After a blissfully quiet night, probably because everybody was so exhausted from the previous night’s exertions, I got ready for my trip home.

I was apprehensive as well as thrilled about going home. I felt safe in hospital. Knowing that if my breathing deteriorated swiftly again, the doctors could simply ventilate me, was as reassuring as it was unnerving. If it happened whilst I was away from the ward, my husband would have to get me back there first. 

I spent an uneventful couple of hours on my sofa cuddling cats and watching mindless TV. The highlight of my trip home was an excruciatingly slow and breathless climb upstairs to the bathroom.

By the time my husband wheeled me back into the hospital, I had double vision, dizziness and significant fatigue. I practically collapsed onto my bed and fell asleep until dinner arrived. But after having been able to consume the pureed dinners for the last two days, I couldn’t swallow food again. 

I rested in earnest again all of Sunday, hoping desperately that the dip in my condition wasn’t slippage into crisis again. 
Monday brought a new cannula, a CT scan and another visit from my neurologist. After the now familiar fatigability tests, which had me garbling words within a few sentences, he announced that the improvement wasn’t what he’d hoped for. My CT scan showed no changes to Thelma or Ted. I was no longer dangerously breathless and could manage to eat baby food. But….

What next?

He suggested plasma exchange. Plasmapheresis. The gold standard treatment for myasthenia.

It couldn’t be done at this hospital. I would need to be transferred to a hospital with a neurosciences unit some distance away. Dr D explained the procedure and asked if I wanted to go ahead. 

There was no alternative. I couldn’t continue being so weak that I was unable to even get out of bed independently. 

He made a call and told me I was to be moved the next day.

Getting ready the next morning, slowly, awkwardly, with my useless hands fumbling at everything, I asked my daughter to help me fix my hair. I looked in the mirror as she worked. We chatted and laughed. 

For the first time I noticed that when I smiled, my mouth didn’t smile with me. 

The right side of my mouth actually turned down. 

Even when I focused on staying positive, I looked sad. 

I had a new goal. I wanted my smile back!

2 thoughts on “Myasthenia stole my smile

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