FINDING A PURPOSE
I was diagnosed with Multi Functional Movement Disorder, Non Epileptic Seizures, CD, and Dystonia and right sided weakness which all started one week after major surgery in April 2010. I suffered with Vestibular problems for many years before that.
I cannot walk more than a few yards even with my crutches so use a wheelchair outdoors and sometimes indoors. I suffer average of 30 – 40 seizures every 24 hours. They are far worse and more violent during the night. They cause violent painful spasms, my face twists and hurts so much, and sends my body in unnatural positions like my leg up alongside my ear where it will lock. I’m in my fifties, so very painful. My speech can be normal, slurred, inaudible or non existent. I can also shout uncontrollably during seizures and talk gibberish although my brain is thinking normal. My right eye will twitch a lot of the time and will lock shut for long periods. I also jerk a lot. I am incontinent especially at night and as I also have IBS sometimes doubly incontinent.
I cannot do a lot for myself. I even need help and supervision with personal care and cannot be left alone as my seizures are so frequent.
Everyday is a struggle with pain, seizures, and tiredness.
I go out as little as possible and do not feel comfortable around people nor do I like visitors because of the seizures.
I try to remain positive and cheerful. I have a wonderful husband, but it is not always easy and I do get tearful at times.
My life has changed beyond recognition since this illness. I had suffered many illnesses before some serious but always fought back. I put on a persona of coping well with this FND when really inside I am just a shadow of my former self. I miss ME. Before if someone told me I was not capable of doing something I would be more determined to do it. Now, I need help with even basic things. The life I had has gone. The future my husband and I had planned now the family are grown up is not possible. I have always been seen as a strong person who could cope with anything emotionally. I can still pretend to be that person, but inside I feel differently. The one thing I have always found throughout my life is that people would come to me with their problems for support and advice and that is something I can still do for the few I still have contact with. On the FND Hope facebook support group I try to be as supportive as I can to other members. This helps me feel that I still have a purpose. I can help people and that in turn helps me deal with this condition myself.
I am a 57 year old intelligent woman who has had a happy life and responsible jobs of authority and never suffered trauma or physcological problems. I am a wife, mother and grandmother and I, Brenda, have a Multi-Functional Movement Disorder.