It’s A Battle Each Day

Experiencing a series of complications, my health has been extremely poor for over a month now. My hospital bag, that I always keep packed and ready for emergencies has been used twice just in the last two weeks. It’s a shame the ER don’t issue “frequent visit” points as the airlines do for frequent flyers. I’d rack up some points in no time!

Upon my last visit, I was taken care of by a charming doctor, who much to my astonishment and surprise, knew what Gaucher disease was. It was a pleasure not having to explain what this rare disease is for the 100^th time, and felt I was in good hands, knowing he understood the complications of his new patient who had arrived in the ER with Gaucher and Parkinson’s. What a combination to have - one rare disease and one common disease. Once again my sweet husband had to suffer alongside me, sitting on a hard chair next to the bed. The ER was pretty empty, so I guess 02:00 isn’t a popular time to go! Fortunately it was not deemed necessary to hospitalise me, and so after some hours I was released and we made our weary way home.

The following day, I perked up a bit, and for a few fleeting hours I felt like I was OK, I was back, I was “me” again and my husband was delighted to be met by my smiling face and enthusiastic chatter when he arrived home from work. Just when I thought I was making progress, I was hit by yet another health issue, this time a common stomach bug. When your system is weak, one becomes prone to picking up infections and bugs. It’s been a very long haul, and I’m struggling to get back to where I was a month ago. I don’t think people truly realise how debilitating Parkinson’s is, and the smallest problem can escalate pulling one down so low, you think you’ll never manage to crawl back up again. Lucky I have a fighting spirit, but it’s taking every ounce of energy to battle these recent setbacks.

I think my husband is amazing. He never complains and will sit patiently at a hospital, taking everything in his stride. Take a moment to read my latest article “Parkinson’s Is No Dream, It’s A Nightmare” in the Huffington Post.