Two days after meeting Mr C, things got a whole lot worse.
Eating food had been problematic for a few weeks. It began with my jaw getting tired from chewing, back in early January. In February, I started to slur my words. March brought an acceleration of these symptoms and more. Swallowing food was more difficult and my speech became sporadically nasal as well as slurred.
Around mid month I started getting strategic about eating. I read up on eating difficulties for people with MG and began eating softer foods that didn’t need much chewing. I also ‘front loaded’ each day by eating more earlier, as evening meals became more difficult to get through.
But it wasn’t just chewing and swallowing that got awkward. Simply running my tongue around my teeth proved impossible. Manoeuvring food around in my mouth was tiresome, it sometimes felt as though I was unable to place food just right and risked it getting into a ‘swallow position’ before I was ready.
Then there was the dribbling. When my lips got really fatigued they didn’t work properly. Which meant sometimes, drinking fluid was messy. It would dribble out of my mouth. Occasionally, friends would offer me a straw when they saw me struggle, and I would get embarrassed. I discovered straws didn’t help, as when my lips got worn out I couldn’t purse them.
And my husband and I loved eating out. We loved eating full stop! As I got more self conscious about eating, I became more reluctant to eat in public. I started to think ahead about where we were going, and what I’d be able to eat. I would also consciously have to speak a lot less in social situations because both eating and talking completely used up the quota of strength my mouth and throat muscles had for the evening. I couldn’t do either with much success, never mind both. I loved talking too!
It quickly progressed so that this problem with eating and/or speaking started earlier in the day. By mid March I was giving up on finishing meals every single time. Sometimes I could carry on after a rest, but not usually. On the Mondays I was on the radio, I would forgo eating dinner altogether to preserve my muscle strength for speaking. It helped a little, but by the last Monday of the month, I realised I couldn’t carry on unless I got my symptoms under control. I was seeing Dr D the following Monday to talk about surgery and azathioprine, so was pinning all my hopes on that.
On the final Saturday in March, two days after my appointment with Mr C, I was attempting to eat dinner with my husband. We’d popped to the supermarket and grabbed easy, pre-prepared meals. Something I would usually be absolutely against, but I was exhausted and wanted something soft and easy to eat. My husband realised I was struggling significantly and encouraged me to buy lots of fresh ready-prepared soups. I chose a pasta meal for that evening. It was a ‘ping’ meal, so was ready in minutes. Sitting down to eat with a small glass of wine, I worked through it with effort. About half way finished, I gave up, dejected. I just couldn’t swallow even the smallest mouthful. Food kept getting stuck in my esophagus. It took effort not to panic, to sip small amounts of water to try and wash it down.
A little while later I decided to attempt to eat the rest. A couple of forkfuls in, I swallowed and my throat completely failed to work. I grabbed a drink and sipped but there was nowhere for it to go. I started choking, heaving and desperately trying to shift the blockage at the back if my throat, unable to breath I panicked. My husband shot of the sofa to try to help me, smacking my back as I tried and failed to gasp for air. After what seemed like hours, the food moved and I sucked in air in relief. Afterwards I couldn’t even swallow water, I didn’t dare for over an hour. My husband asked me if he should take me to hospital. I said no.
The next day, I decided that I couldn’t risk trying to eat solid food until things had improved. After researching the advice for people with MG who suffered bulbar (throat) muscle weakness, I thought it was the safest interim measure. Until I could speak to Dr D about it.
I made some blended soup the next day, so I could have protein shakes fortified with banana or avocado for breakfast, and different soups for lunch and dinner.
I also packed a bag with pyjamas and toiletries. I knew I’d have to go into hospital soon. Being in control of the little things comforted me.
By Tuesday I was the weakest I had ever been. At work I struggled to lift my head upright as the back of my neck ached with the effort. My fingers and hands didn’t have a chance to get tired, they started out like that. Both of my arms felt useless.
By 9.30am I decided I had to go home. Walking the few hundred metres to my bus stop at the pace of a sloth, I still thought that merely a few hours extra sleep would rebalance me. I got home and crawled into bed, by 10.30am I was deeply asleep. I vaguely remembered half waking a couple of times as I tried to turn over in my sleep and was unable to lift my head from the pillow. My daughter called me at lunchtime;
Where are you Mum? I’m at the cafe waiting for you. Are you ok?
I had totally forgotten to let her know I was giving up and spending the day in bed. We would meet every Tuesday either for breakfast or lunch.
I got up at 4.30pm feeling a bit refreshed. Our radio team had a meeting that evening that I was determined to go to, so I persuaded my husband to drive me to it and wait with me.
The next day I went to work again. I was literally taking things one day at a time, hour by hour wondering at what point I should call it and go to hospital.
Managing to get through the day, I made it home looking forward to a restorative soak with a bath melt.
I never made it. By the time I walked through the front door I could hardly lift my feet. I went straight to bed. After an hour I got back up to eat some soup, aware that I was losing weight by the day now. After half a cup I let my head flop onto the back of the sofa.
A short while later, sipping on some water, I struggled to swallow and almost choked again. I became petrified. If I couldn’t even drink fluids, what was I going to do! My husband voiced my fears and asked me how I was going to manage to swallow my medication. I’d been using a tablet cutter to chop them into tiny pieces for the last few days. But I worried now that even those fragments of pills wouldn’t go down if I couldn’t get water down. The fear of choking was probably making it a lot harder too.
At bedtime I tried to take my last mestinon of the day. It took me almost twenty minutes to get it down, aspirating water which burned the back if my throat and nostrils.
Afterwards, the saliva in my mouth was difficult to get rid of. I propped myself up in bed worried that I might even choke on that. Lying there breathless, I tried to calm myself down; crying would only make things worse, and anyway, I wasn’t capable of swallowing my own tears.
Neither of us slept very much that night. Me, wondering if I’d left it too late. Should I go to hospital now? What if none of the medics on duty in A&E understood what they needed to do for someone having a myasthenic exacerbation. My husband, listening out for me choking.
The next morning, when I should have been at my strongest, I had difficulty getting my 1st mestinon of the day down. I chewed it until the little bits dissolved in my mouth.
On my way, very slowly to the bus stop, I called my GP’s surgery and made an appointment. I clarified with the receptionist that I definitely needed a face-to-face appointment, and that it must be with a doctor rather than a nurse.
I phoned my husband while I was waiting for the bus and told him;
I’m going to see my GP now. I think I need to go into hospital.
Shit just got real bub.
I had no idea just how bad it was going to get.
Or how fast.