She looked as if she were about to burst into tears,
but she was wonderful at catching the ball of her own mood in mid-air.
Well, this has certainly been the year. As you know, I live with a complex bucketful of dodgy genes, autoimmune diseases, chronic infections, post-viral syndrome and the associated damage all those things have done to my organs and endocrine system – but mostly I’ve managed. I’ve cobbled together treatments, I’ve found great practitioners, and I’ve just kept going.
I even had yet another crappy diagnosis of a genetic problem – a degenerative neurological/muscular thing and I managed to keep my eyes focused forward and not lose myself in self-pity. I made changes to my calendar and my working life, I simplified, I got more help, I got more rest, and I thought that would be enough.
But something new felled me this week.
Something I’d never even heard of.
For months (since late last year if I’m honest), I’ve had this feeling deep in my being of something being ‘not right’. Periods of deep fatigue, mental confusion, depression, anxiety, arrhythmia, terrible insomnia and lots of ‘thyroid-y’ things. I’d get on top of it, only to slide back down. It got to the point where I reached out to functional medicine experts a few months ago to work with me on figuring out what else I might need to tweak or add to the mix. Bloods showed lots of rampant auto-immune, stealth pathogen and thyroid stuff, so we embarked on a series of trials to work out what I might be able to do to feel better and manage my health more effectively. I wasn’t looking for a cure – at this stage of my life I just want to be manageable, mostly pain-free and to stop things getting worse or breaking.
I finished my first round of tests and trials, and that’s when the wheels fell off the bus.
For the past week I have been feeling more and more tired, more cold, more brain foggy, and like I have been moving through molasses. An odd feeling. An awful feeling. I have been plagued by a sense of doom. (Been there several times before, and it has almost always been infection-based.)
My chest pain and breathlessness ramped up, I was not hungry at all, and even drinking seemed to be a chore. My body felt like it was filled with lead, and I ached and stiffened and limped around. I got puffier and puffier. The feeling of something being seriously wrong grew and grew. But I hate to make a fuss, so I just sat with it, waiting, hoping I’d figure it out. I mentioned this to my sister and she urged me to get myself checked so I rang my doctors and let them know what was going on. By that stage my heart rate was low, I was starting to slur my words a little and my voice was hoarse. My specialist advised me to seek urgent medical attention. The kind of urgent where they tell you to ‘go now’.
So, it turns out I was having what is known as a myxedema crisis – a medical emergency where the body’s thyroid shuts down. If untreated it leads to a coma, and fatality in 60% of cases. It can also cause organ damage and organ failure. It’s reversed by thyroid meds, steroids and other drugs that stabilise functions. I was lucky enough to catch it before the coma stage. But I was heading that way.
48 hours later I am home in bed, with a raft of medications to take, regular tests to monitor my progress, a wait to find out what my latest prognosis will be, and a lot of thinking to do, once my brain is working properly again.
I’m a little thrown.
Okay, a lot.
I’ll get my head around it. I always do, and then I’ll be fine. Chronic illness is always about learning to adjust, adapt, and acknowledge – without falling into the pit of despair or self-pity.
Meanwhile, Ben and the boys are taking excellent care of me, but I’ll be off the airwaves for a bit while I rest and put myself back together. Also, I have amazing artwork on my bedroom wall and a gorgeous view out over trees and sky. So there is that too.
Love, gentle hugs, and gratitude for my still-beautiful life, Nicole xx