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We all have fears at some or the other, even in normal life situations. But, my worst fear at the moment while writing this is that of suffering from respiratory muscle weakness, and dying because no one will realize that is what my problem is.
I have had an allergy problem for a long time, and often had breathing difficulties. It was most prominent in the evenings , so I would take a cetirizine tablet. I think it’s only about 4 times in the last 40 years that I needed to use an inhaler. However, the neurologist who confirmed my diagnosis said that Myasthenia’s cannot use antihistamines, and that I should manage with a mild hay fever nasal spray.About 3 weeks ago, when the weather started warming up , by coincidence I began to have swallowing difficulties. I first thought that it was a cholinergic crisis, as happened before, and stopped taking my Pyridostigmine. I soon realized that I was wrong, as I started slurring and getting worse. I immediately took a tablet and was okay then except for the excess mucous causing swallowing difficulties, coughing and breathing problem.
My GP has put me on a nebuliser with salbutamol/ saline solution 3 times a day. Every time I use it , my pulse rate is very high over 100 upto 128, and my chest has a burning feeling like I have rum miles. My doctor says these are side effects of the treatment, but it will settle down.
I am really afraid that if it’s my myasthenia Gravis that causing my breathing difficulty, then it won’t come right. My wife and are old and live alone and even if I have an emergency which requires a specialist, we would need to drive 80 km to the city.
In these covid times, we need to test for covid before even entering the hospital. All this takes time, and we know of people who have died in the car park before being attended to. Dying because of struggling to breathe is like how fish feel out of water. It’s a nightmarish thought.