Living with CFMD/FND

It has taken three years to eventually get a diagnosis. Three years. And they didn’t even tell me. No letter, no call. I went to the GP to ask for more referrals and it was Dr. D who told me the news that had been sitting in my file since March. CFMD: Chronic Functional Motor Disorder. Also known as FND: Functional Neurological Disorder.

I had to google it.

A functional neurological disorder (FND) is a condition in which patients experience neurological symptoms such as weakness, movement disorders, sensory symptoms and blackouts. The brain of a patient with functional neurological symptom disorder is structurally normal, but functions incorrectly. It is a complex condition where where patients experience physical neurological symptoms, but without a clear structural problem in the nervous system. The exact cause is not completely understood, although stress can be a major contributor.

Somewhat vague. Somewhat confusing, upsetting, infuriating…. and sadly something that has no cure. Yesterday was a hard day. The doctor told me “you have to get used to a new type of normal. Every day will be painful, but different degrees of pain. And the bad days will be excruciating”.

“In some people, they may continue for months or years and can hinder a person’s ability to work and carry out everyday activities. According to FND Hope, a non-profit patient advocacy organisation for people with FND, symptoms of FND can be as debilitating as multiple sclerosis (MS) or Parkinson’s disease.”

The diagnosis explains a lot. For years I have woken up in unexplainable pain. I have endlessly cancelled plans, often stayed in bed for hours on end, spent thousands of pounds on treatments that haven’t worked, burst into tears on a run or walking down the street. I cannot remember the last day I felt completely normal. It is exhausting. It is emotionally draining. I have lost friendships. I have lost partners. I have lost jobs. I have lost my sense of normality. I have lost my sense of self.

My life has been subconsciously dictated by an illness I did not even know existed. My life has been led on a journey I did not sign up for. I am just so tired. There are days I am not strong enough to deal with it. There are days when I have sometimes felt worse.

But enough. 

A diagnosis is sometimes a wonderfully positive outcome. In a way it is a form of therapy in itself. You have an answer, you have an explanation: you have a solution.  Through process of elimination – leaving the city life, exercise, healthy diet, quitting smoking, quitting drinking, saying no to things on a regular basis, travelling to new places, removing toxic relationships  – I have already learnt what it is that really helps me, without even knowing what was wrong.  I have also learnt what does not help. What sets me back. What makes the darker sides just one shade darker.

I have the greatest of respect for those who live in pain. I have even more respect for those living in it but not allowing it to dictate their lives.

I am still me. I am still great at what I do. I am still a go-getting-adventurer-seeking-wine-loving-trail-seeking happy, friendly person with years of battles left. This diagnosis will only make me realise just how important it is to have the family I have, the friends I keep and the adventures I embark on. Thank you for already making it easier.

Life has only just started.





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