Tag Archives: remission

A bad week in Uruguay

After five days in breathtaking Rio De Janiero and a couple of days on both the Brazilian and Argentinian sides of the Igazu Falls, we had a night in Buenos Aires before heading to Uruguay for carnival.

To get to Montevideo, Uruguay’s capital, we had to take an overnight bus from Puerta Igazu to Buenos Aires and then an early morning boat to Montevideo the next day. It was exhausting and I think the combination of the extreme heat, the lack of sleep and the different climates led to what happened next.

On day 1 in Montevideo, I had the start of double vision and felt pretty unwell. This developed rapidly over the next few days to the worst double vision I’ve had in years, a nasty headache from the swirling and really bad fatigue. Elaine said I was getting less and less like myself each day and the hours where I was fit to do anything kept getting shorter.

Still, we tried to enjoy the cool carnival nights in Montevideo.

This photo above is on our first night in Montevideo. It was the night of the main parade and here we’re climbing scaffolding to get a better view.

After five nights in Montevideo, we moved on to Colonia Del Sacramento, a former colonial town across the river Del Plata from Buenos Aires. Luckily, there is not much to do in Colonia, so I was able to relax there as I didn’t have much energy for anything else.

After a week of getting worse each day, although I had doubled my steroids, we caught the boat back to Buenos Aires a day earlier than planned to get some help.

I’ve now had medical care in a private facility in Argentina’s capital (more about that in another blog soon) and after upping my steroids and pyridostigmine I am feeling much better. However, this Uruguayan episode served to remind me that the MG is more of a sleeping beast than a distant memory and that I can’t take a day of being well for granted.

The photo for this blog is at the lowest point of my last episode where I wanted to hide away from the world. Thankfully in that moment, I had Elaine to keep my spirits up and pull me out of my self pity. So it has served to remind me how lucky I am to have her by my side too.

Despite this bad turn, the reason we are here – to experience other countries and cultures – is what kept me going. Here are a few of the amazing things we experienced in Montevideo and Colonia Del Sacramento. I hope the beauty of the country and its people is what I remember when I think back on our time there.

165/365 – The meaning of remission

Remission is defined as a period where a patient’s health improves – last night I found out I have misunderstood and over complicated this.

After a difficult adjustment to my reduced steroid dose last week, I decided to give my body an extra week to cope at 2mgs. This was a tough choice as I questioned whether I was being weak. It had been a constant over the last few months – my stopping and starting the steroid reduction. Forever adjusting. Was I putting back my chance at remission each time I hesitated?

What remission meant and now means to me

My version of remission has been drug-free and symptom-free – I thought this was the common understanding of the term. While this  is the holy grail for people with myasthenia, remission simply means symptom-free. That the condition is under control and not flaring. Not that that is an easy feat but it’s easier when still taking medication

I found this out last night from one of the members of the Young Myaware London support group and it instantly made me feel better.

 It’s more realistic and closer for me right now. The experience of reducing my steroids has highlighted how reliant my body has become on them, but that’s ok. I can still have a crutch – I don’t have to do it all on my own.

For the first time, remission feels like something I can aim for as long as I keep in mind the marathon not a sprint mentality.