Monday 8 April 2019

Living with FND for World FND Awareness Week 2019

FND (Functional Neurological Disorder) is where the the brain's messaging system (the central nervous system) doesn't work properly so my brain is unable to send and receive messages properly. 
"One way of thinking about FND is looking at it as a bit like a 'software' problem on a computer. The 'hardware' is not damaged but there is a problem with the 'software' and so the computer doesn't work properly."
Some of the symptoms are constant, meaning that they are prominently there such as cognitive dysfunction, chronic pain and fatigue and other symptoms are episodic which means that they come and go such as seizures, headaches/migraines and sensory disturbances.

Some people may only have one or two symptoms, others have numerous symptoms. And like my blog title we are medical zebras because like a zebras stripes no two zebra's are alike and no two people with FND will be alike despite having the same illness.

I've have FND for 6 years now. It's started of with a few symptoms  pain, tiredness, dizziness, falls, involuntary jerks but I just put it down to being overworked at University. And then one day at a friends I have a tonic clonic seizure. I had to have a tube put down my nose to seizure my airway - not nice coming round with that I can tell you. Since then my symptoms have progressed and more diagnosis' have been given to me.

FND has completely turned my life upside down (alongside my other illnesses) and in someways I'm having to re-find myself as I've lost so much to ill health.
I try to focus on the others aspects of Naomi but sometimes, especially on my bad days my health just takes over.

As well as affecting me physically being chronically ill and disabled has a huge emotional toll. Permanently being in pain and having to deal with a host of other symptoms; not being able to predict one hour to the next; dealing with appointments etc really affects me. Sometimes I feel more able to cope and then I have times like I'm going through at the moment where I'm not feeling so resilient and my health really affects my mental health.

I get a whole range of emotions. I get frustrated when I can't get my body to do what I want it to do or I get upset when I'm in pain and meds aren't helping.

There's also the other things that come with being disabled, like people misusing Blue Badge parking spaces.

I feel like my life is on hold at the moment. I had my life all planned out and then I got ill and now I'm just waiting and waiting and waiting.

FND isn't very well understood which is really really difficult to say the least. I've often been accused of feigning my symptoms or exaggerating my pain levels.
I've learnt to live with FND and my other illnesses and I've learnt to put on a mask. I often use the analogy of a duck where the duck look like it's gracefully gliding on the water, but underneath it's paddling like mad to stay afloat. 
I've learnt that shouting/screaming/crying does very little so outwardly I may look "okay" but inside I'm shouting/screaming/crying.