In January 2003, I was diagnosed with Myasthenia Gravis – a condition causing severe muscle weakness. When the consultant came and sat on the end of my hospital bed and explained it to me my initial reaction was ‘wtf is that?!’
For those of you who haven’t heard of or googled it yet, this is the link for the only charity dedicated to supporting those with the illness and finding a cure… https://www.myaware.org
Basically, its otherwise known as The Ragdoll Syndrome as you literally flop like a ragdoll at the end of the day.
When I was diagnosed, our eldest daughter was just 16 months old. She was oblivious to what was going on thankfully, but jeez life changed so much from that day! When I fell pregnant with our middle daughter, the pregnancy actually made me better! Then I got cocky and decided to have another baby, which caused me to have a relapse and start round two of fighting the bloody thing off!
I’ve recently been discharged from my consultant’s care for the second time and, in the nicest way possible, I hope I don’t have to see her again! Long-term, high-dose steroids have played havoc with my body. mainly by making me balloon from a size12/14 to a 22 in a matter of months and then losing most of that when the dosage was reduced. ultimately, they kept me alive but my god those things are evil!
So, since my diagnosis, I’ve had to adapt to this new way of life. Granted, I haven’t lost a limb or anything quite as drastic but this condition is life-threatening if you don’t make these changes. When I have a cold, I can’t take cold and flu meds… orange juice and paracetamol are the best I can manage. I can’t blow balloons up as the weakness doesn’t allow my mouth to grip the balloon in my mouth. I have to be on high alert when being prescribed new medications. there have been a fair few instances where, me being me, I’ve questioned the doctor to make sure I can take them having MG. Sometimes they have clicked and apologised before changing it to something more suitable, mostly they’ve shrugged and said ‘you should be fine’. Erm what? Should be?? If I didn’t have my head screwed on it could cause me to relapse and go back to square one, or worse kill me! Simple things like swallowing can become difficult and I could basically drown in my own saliva ffs!!
The point of me writing this post isn’t for sympathy or for you to get your violins out. it’s just to raise more awareness of the condition, even if it’s just a little. Another reason I wrote this is to give a massive shoutout to my husband, kids, family and friends who have supported me endlessly regardless of my bitching, moaning, crying and fatness (lol)! You’re all the best!
So, thank you for taking the time to read about me and my MG… it’s shit but you have no choice but to get on with it. I’m sure a LOT of you can relate to that!