Hello. I am ‘might war’ and I am a functional movement disorder sufferer.
Just give me a minute. Seeing the words down on paper tends to steal my breath. Why? Because those words just do not do justice to the experience of living with such a condition.
My life has changed beyond all recognition. I’ve had to adjust to the fact that my body is no longer under my control. I now travel by wheelchair.
Basically, I am broken.
And I am pissed off about it.
I want to become that inconsolable child who throws itself upon the floor and howls: to just roar and roar and roar and refuse to be comforted.
Such a release would seem a relief, but I am afraid: for there is such rage within me:
This … THIS is not me. THIS is not my life. THIS is not what I spent effort and sacrifice to achieve.
This feeble being living a figment of life: existing from one point of agony and defect to another is NOT who I am.
But the truth, Ladies and Gentleman, is that this IS who I am now. And I cannot begin to tell you how that truth burns me … grates me … and breaks me; to the point of tears.
My condition is a “chronic illness”: and as humanillnesses.com succinctly points out, “people with a chronic illness usually don’t return to completely normal health. The illness does not go away, even when the symptoms are controlled”.
Yeah, I know what that feels like. I recently had a conversation with my sisters where I admitted that despite being at a good phase in my illness, I am barely functioning on an hour-by-hour basis.
It took nearly two years – 701 days to be precise – of medical investigation to reach a diagnosis. And as the specialist doctor explained, this is because most medical professionals are not familiar with functional movement disorders.
So here I am with an illness that is not only hard to recognise, but hard to describe. But I’m gonna have to try to: because I’ve agreed with my sisters to meet monthly and speak candidly about what the illness does to me and how it makes me feel. This is because my sisters were saddened to know that I was still suffering whilst they thought things were better because my health hasn’t been as scary over the past month.
And now I’m scared. Because the longer this situation persists, the harder it gets to speak about. It takes so much effort to do anything. And my words shrink away from my reality for fear of being tainted by all the dysfunction. Too late!
The problem with this illness is that it is rather schizophrenic in its manifestation. I either look like a severe case of palsy (where I cannot be left unattended, need help with feeding, toileting etc. and freak people out with my behaviour); or I look physically OK, but struggle to understand what is happening around me and to communicate; and where my day begins and ends with brushing my teeth – because that small act of controlled movement wipes out my system and my ability to function for the rest of the day.
I am bored, bored, BORED of this shit! But I can’t escape the fact of the illness or the fact that my friends and family wish to understand what is going on with me. So despite my fears and anxiety, I am going to have to explain what it means to have a functional movement disorder. Because although I have made changes to the way I live, move, communicate and everything else, my quality of life is still pretty lame. And until I can make others understand what it is to be me and in my body, I will not receive the assistance needed to do more than exist on an hour-by-hour basis.
And believe me; existing takes a lot of effort for very little return. So bear with me as I search for the words to share my experience.
AKA Crip McWog™
This series in running order
- The Stink of Chronic Illness
- Functional Movement Disorder :: #1 – What Is It?: which focuses on what to do when your symptoms first manifest.
- Functional Movement Disorder :: #2 – Exploring the Symptoms: which focuses on symptoms of weakness & paralysis, tremor & spasm, contractures and gait problems.
- Functional Movement Disorder :: #2.1 – Exploring the Symptoms: which focuses on symptoms of pain, facial spasm and speech problems.
- Sick ‘n’ Tired (An exploration of anger as a healing process)
- Spastic … and sh!t
- If Your Universe Has No Moon …
SPREAD THE WORD
If you liked this post, I mean really liked this post, why not tell your friends? You could also subscribe while you’re at it. You know, so you don’t miss anything.
AUTHOR: I am might war. I have a love of music, the written word, travel, Anime, polar bears, people and “sticking and colouring”.