A Toast To Caregivers
It’s been a long journey with neuromyelitis optica (NMO). I’ve had to learn how to better help my health and learn new ways to do things. I’ve also had to learn how to ask for help and allow assistance, which wasn’t and isn’t easy for me. Well, time gave me a new duty in life, caregiver.
I want to say right out of the gate, being a caregiver is tough. I have grown so much more respect for those who take care of others. But how did I get to this point?
Becoming a caregiver
I received a call from my aunt who lives with my mother. A call I did not want. My mother was sent to the emergency room, with pain in her abdomen that was too much. She’s a tough lady and for her to go to emergency meant a real issue.
Within hours I was on a plane and back home as quick as I could be. She was diagnosed with diverticulitis, something I was familiar with from a friend's mom. I knew the severity, but she did not. So it was my job to truly inform her of some life changes that would be happening.
Those who don’t know, diverticulitis is when sacs form in your dog stove system and fill up with things such as seeds and nuts. They can rupture and cause infection. My mother loves nuts and eats them daily as "fast meals". See how this is an issue for her?
Again, I give so much respect to caregivers. I’d have parades for you every day. I was scared, how could I do this? She is way more stubborn than I and truly stuck in her ways. But she’s my mother and I had to do this for her. Just like so many caregivers do for those of us living with NMO.
No easy task
So I played good cop/bad cop with her. I stayed as calm and rational as I could be. Went through it all and she wasn’t fully grasping it. So I had to call my bad cop, my friend's mom who has diverticulitis as well. Together we finally broke through to her that if she didn’t follow diet plans she could end up back in hospital - and a chance she could die.
The stress and negative thoughts in my mind have followed me since. Keeping up with her and making sure she doesn’t stray from diet is work. I’ve never had to be the one to take care of someone, let alone my mother. This is a whole new world and taking care of a stubborn person is no easy task.
To our NMO caregivers
In all, I feel like I’ve grown. I now know the hell I put those who have helped me and my NMO. But at the same time I think my experiences helped, and made me think how I acted when first diagnosed. The fear that puts you in a trance of disbelief and constant thought of how could this happen to me.
So caregivers in the NMO community, I applaud you and all the hard work you do. You are truly rockstars!
Were you misdiagnosed, prior to being diagnosed with NMOSD?