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Does Functional Neurological Disorder Own Me?

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Does functional neurological disorder own me? The obvious answer is no, right? Is it even physically possible to be owned by my disability?

There are days where I would answer this question very confidently with the words, “absolutely not.” I am my own person and refuse to be controlled by these symptoms I never asked for.

But lately, most days my answer would be yes. When I was diagnosed with FND at the beginning of 2019, I was experiencing leg weakness and loss of sensation in my legs and feet. I was struggling to string one sentence together without either stuttering on every single word or suddenly completely forgetting what I was even talking about in the first place. All my mind could concentrate on was the intense pain in my back or the tremors in my legs.

Once I’d received the diagnosis, I accepted it fairly quickly. At least, I thought I had. Turns out even now I still often look at myself and refuse to believe it. But back then I believed that acceptance was the first step in my recovery journey and it was. Although I had to give up my full-time job as a community care worker, I walked around with a walking stick. Admittedly this did cause further pain in my back but I chose to ignore that and focus on the fact I could feel my legs again. I got around fairly independently, mainly relying on someone being with me when outside as I would frequently fall over.

After a few months, I bought a self-propelled wheelchair. This gave me the opportunity to be out and about for longer periods of time without the worry of falling over, causing myself more pain or having to stop every 10 minutes to sit down. I could deal with this life, this wasn’t so bad after all.

Jump forward to the present time. I’ve been unable to get out of bed for six weeks, my legs can barely stand my weight, I feel constantly exhausted, I’m easily confused, my pain has skyrocketed, and I have been having seizures for over a year. I’m still in the dark as to if these are dissociative seizures, non-epileptic seizures or full body convulsions. All these have been mentioned but I’m still on the path to diagnosis for this one. I rely fully on my mum for personal care, food and drink and other daily tasks. Mum had to take early retirement to become my full-time carer. And the most recent incident is that I have gone into urinary retention. I’ve had a catheter for just over a week now and am awaiting further testing.

This waiting is often one reason why I feel like I am owned by this disorder. My life has become constantly waiting for or chasing up appointments, missing holidays, missing family day outs, not interacting with my family in a room that isn’t my bedroom, not washing my own hair, not putting the toothpaste on my own toothbrush, being unable to get my own clothes out, having such limited mobility that I can’t walk to and use a toilet instead of relying on a catheter bag and commode, not making my own first cup of coffee in the morning, relying on my mum to manage my medication, not having the energy to simply reply to a message from my best friend. All these little things are plucked from a giant pile of everything I am unable to do because of FND. These are all the tasks I used to do that have now been taken from me and are owned by FND.

My FND has isolated me. It’s banished me to my room with no indication of releasing me any time soon. I feel as if it has taken every aspect of my life and torn it apart so ferociously, like a child ripping the paper away from their birthday present, eager to see what’s underneath. But what’s underneath me when you’ve taken so much from me already? A broken person, who has no control. A girl who either wants to scream out the pain and anger or hide under a blanket, protecting herself from further damage. A daughter who needs your constant support. A sister who has such little energy she can’t make it through one conversation with you. An auntie who can’t come with you and play when you tug on her hand. A friend who has seen your message but days later is still yet to reply.

My apologies if you were hoping for an inspiring read. But this is my current truth. I say current because I am aware of how randomly and quickly this disorder can change for me. I know I won’t always look at my situation and feel this way. Although it may not sound it from what I have written, I am a fighter and I will continue to fight and get to the point again where my life is my own.

When I really think about it, this time six weeks ago I could barely sit up and I had little to no speech. Now I’m talking with only the occasional stutter and I’m standing with my walking frame at the edge of my bed and marching on the spot. I am taking small steps towards feeling like myself again. I don’t care how many small steps it takes or how many more things get thrown at me along the way, I will keeping pushing. I will break through to being that person I used to know. That daughter, sister, auntie and friend you once knew. I will take my life back.

So, will functional neurological disorder own me? Absolutely not.

Image provided by contributor.

Originally published: August 8, 2021
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