"It may be difficult and arduous at times, but I am determined to not let FND or my symptoms from stopping me live my life."

 
Rhiann Johns

 

Read the story about a person living an unpredictable life with Functional Neorological Disorder but helping many others through sharing her story and experiences!

It's an Unpredictable Life!

 

Many people live their lives by a set of daily routines. Alarms set for a specific time, get up and then follow a strict routine that's performed, every day. And that is just the mornings. To keep our lives in order, we have a set of routines that we follow every day. Life is neat and predictable. That is unless you live with a chronic illness. I cannot tell you how many times I've written "Chronic illness is unpredictable" in one of my blog posts. But it's been a lot because it's true. And every day I'm reminded of it.

I live with a neurological disorder known as Functional Neurological Disorder (FND). The condition where although there are no structural abnormalities in the brain, it is a problem whereby there is a problem with the functioning of the nervous system and how the brain and body sends and receives signals.

 

Like with many neurological disorders, there are many ways in which FND can present itself. No two people diagnosed with it, are likely to exhibit the same set of symptoms. The symptoms I experience include pain, and constant trembling in the legs, also weakness in them resulting in them frequently giving way with no warning. I also experience continuous dizziness and regular episodes of vertigo and poor balance causing frequent falls. Other symptoms include visual disturbances including double vision, and on the odd occasion of complete sight loss. Some days, I may only experience one or two of the mentioned symptoms. On other days I may complete the whole set.

 

Life with signs of FND is rather like having a box of chocolates every day, you never know what you are going to get.

 

This morning, for example, I awoke around seven o'clock after a restless night due to chronic pain. Upon attempting to get out of bed however my legs immediately gave way; legs too weak for me to stand up. It took me over two hours for my legs to gain enough strength for me to be able even to stand.

This is a small snapshot of a typical morning. But as anyone living with a neurological condition can attest there is nothing typical about our days. Our days are unpredictable; no two days exactly alike. This morning I may have experienced debilitating weakness upon getting out of bed, but tomorrow my legs may be cooperative. The impervious nature of my health can change within a blink of an eye. I never know where or when I will next encounter one or more of the many symptoms that accompany such a disorder.

These symptoms as much as they have a physical impact on, they also have an emotional impact because of these experiences. These physical sensations, especially the dizziness and vertigo have exposed me to experience fear and anxiety. Fear is grounded in not feeling safe. Not knowing when the next symptom will appear. It often leads to concern about leaving the house, not knowing that if I do my legs may or may not collapse beneath me. And it is subsequently leaving me unable to get back up. As a result, it can cause you to be on high alert for every abnormal or unusual sensation within your body. Or on constant guard for any potential triggers that will set off unwanted symptoms.

Living with such unpredictable and debilitating symptoms has an all-encompassing emotional and physical impact on a person. It changes your life completely, and so it changes you as a person.

The road ahead of us contains only a giant question mark. Life so unpredictable that we do not know what lies ahead of us tomorrow, next week or even next year. Although my own journey with FND has been long and difficult, I have found purpose in my writing and sharing my own experiences with this disorder through my blog and contributions to other websites and blogs.  It may be difficult and arduous at times, but I am determined to not let FND or my symptoms from stopping me live my life.

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