Or at least awareness days. It’s April 13 here in Australia today.
That means it is Wear Green for Prems today and all three of my children were born early and truly every day I realise just how blessed we were on our prem journey! Our son born at 31w3d is a strapping 14yo soon to be 15 this year. He is yet to have the big growth spur that his mates all seem to be having but we know it will come. It simply has to he has these giant feet that keep growing almost in front of our eyes! We were told when he was born expect him to be in hospital at least up to his original due date if not longer so 9 weeks give or take. He was home in 19 days.
Our girls were also born early 34wks exactly and in a couple of weeks they will be 11! Each day they grow into gorgeous young ladies. Their journey in the nursery was also short by comparison we were expecting 6 weeks and again they were home in 13 days. I am reminded when I see stories like another mum who recently had her twins at 34w3d and at over 12 weeks they are still in the hospital, just how blessed we were and are with our three kids.
Today is also worldwide Functional Neurological Disorder Awareness day #FNDAware. Just over a year ago I was diagnosed with FND. This isn’t something I had ever heard of before and really I must say didn’t really understand. All that I really knew then and now (through reading my journals) is that I had left side hemiparesis. Which meant that I couldn’t use my left arm and walking was hard. I can walk now without a stick which is really good, my balance is still hit and miss and the strength in my left arm is still not what it is in my right arm. Mostly this isn’t a big deal but for things like using a spray deodorant it can be very frustrating! I also seem to notice that when I am particularly upset, anxious or confused I loose sensation in my fingers. So clearly the FND is not “gone” as such just managed. My treatment for FND involved intensive physiotherapy and occupational therapy to re-train and create new neuro pathways to get my arm and leg to function in a “normal” way.
It would seem that I was very lucky that when I went to hospital last year, the treating neurologist knew what I had so I was diagnosed extremely quickly. Many people can go for years and a myriad of tests before diagnosis. This process in itself can be very frustrating. The cause of FND is unknown at the moment. Some people think that it is caused by some form of trauma, others are adamant that they had no trauma physical or emotional so there must be some other cause. The reality I guess is that the brain is such an incredibly complex organ that we simply don’t know enough how it works to know how or why some things happen.
The really easy way to think of FND is that the brain is the hardware and how our body works is due to the messages (or software) sent out by the brain. For some reason the messages sent out from the brain get muddled up and don’t get to the right place or in the right way, which in turn causes any number of symptoms like hemiparesis, headaches, seizures, eyesight issues, speech issues, balance issues and many others. The symptoms of FND for many people can be as debilitating as Parkinson’s Disease or MS. Perhaps even harder is that FND is poorly understood by both the medical and wider community which can be incredibly isolating. I would argue that if you had no mental health issues prior to a FND diagnosis if it took years to get a proper diagnosis and treatment plan then you certainly eventually will. FND is a chronic, ongoing, invisible illness where every day can be different. With some better than others.
For me the cause is most definitely related to past emotional trauma or baggage! Further to my diagnosis of FND last year I was also diagnosed with Major Depression, Severe Anxiety, PTSD, Depersonalisation and Dissociative Amnesia. So for me it comes as no surprise that the messages from and to my brain get muddled up. Life at the moment while physically is definitely improving emotionally or mental health wise is probably tipping further that way. If you can imagine a set of scales and my physical health being on one side and my mental health on the other the ideal would be that they are mostly in balance. Sadly, that isn’t the way things are it seems the better my physical health is the worse my mental health is getting. It feels for me that things are in the extremes it is one or the other. That however is really a post for another day.
In Australia we are incredibly blessed with a world class medical system that mostly works well to support the patient in a holistic sense. At least that it feels is how it has been for me. There is a FND Clinic that has been established in Brisbane by Neurologist Dr Alex Lehn and here is a great story about another lady diagnosed with FND.
So it seems that for me April 13 is when the two worlds of my prem babies and my current mental and physical health conditions collide.
It is also a very happy day for a number of my friends with AT least two lovely couples celebrating their wedding anniversaries.
til next time