THE BLOG

Make Time Stand Still

19/06/2014 11:04 BST | Updated 18/08/2014 10:59 BST

I would like to dedicate this article to a good friend who is battling Parkinson's and will hopefully be undergoing surgery soon. May you have a speedy recovery, resulting in an improved quality of life. This article is for you - one of the many unknown heroes, whose private story goes unsung but who inspires me with your bravery, insightful words of wisdom, a great sense of humour and wit.

The British, well known for our stoic characters, put on a brave face and stiff upper lip making the best of a bad situation. Anything can be solved with "a nice cup of tea", and a cheery smile often hides pain and the saddest of hearts. Parkinson's disease like a wrecking ball smashes into life when least expected, leaving chaos in its wake. Slowing it down is not easy, and takes continual work and dedication, making changes to keep Parkinson's from it's course of demolition. I am doing all I can to keep it at bay, and in my last article shared important information that I've learnt from fellow sufferers over time. On a bad day I feel as if time is running out, my body functions poorly, worn beyond exhaustion, how I wish I had the power to make time itself stand still. I'd stop it in a second, and push back the hands of time to the days before Parkinson's shook up my life.

Thankfully I am of a positive nature, and wouldn't have made it this far without my fighting spirit, but I'd be lying if I didn't admit to having the occasional "down day", however I always manage to bounce back. I usually write encouraging words, and hope you feel my determination between each line. What you do not see beneath my smile is the pain I endure silently; the tears I shed quietly at night in the privacy of my bedroom cloaked in darkness, so that no one will bear witness to my ongoing struggles. This agony goes unnoticed by all except my sweet husband, who helplessly stays by my side whilst two chronic diseases relentlessly attack my body with all their force. It takes great control and a sense of dignity, my British background that is deeply ingrained in my character, enabling me to daily struggle with chronic pain, most people couldn't begin to imagine, let alone handle in a continuing long term situation.

Upon meeting me, you wont see the pain I hold within, nor will I allow you to, for pity is not what I seek. I long for a normal life, whatever "normal" may be. I have long forgotten what it is to wake in the morning, refreshed, energised and pain free. Pain and I go way back to childhood and are no stranger to one another. It is there to greet me each morning, and accompanies me to bed every night until exhaustion takes over and I am granted respite during a few brief hours of sleep.

When I hear someone tell me how well I look, maybe unable to think of what else to say, I know they mean well, but trust me, this is the last thing I want to hear. False compliments do not make me feel better, so please withhold flattering comments in the hope that your words will soothe what ails me. Please refrain from saying "I can't see you shaking" for this thoughtless remark merely compounds my frustration and proves you understand little if nothing about Parkinson's disease. The medications I take help control the shaking, but Parkinson's is so much more than simply shaking. Ask anyone suffering Parkinson's, and they'll swiftly agree, for where does one begin to explain to those who are ignorant of the many complex nasty symptoms of the disease itself and the side effects from strong medications required to live a semi-normal life?

It is 02:00 as I sit here writing this article. My household is fast asleep and only the ticking clock, the hum of the refrigerator and the constant snoring of our dog, accompany me in these lonely hours. So to all those suffering Parkinson's, you are not alone, I hear you, I feel your grief and understand your plight. As morning approaches, the sun begins to rise, and with great resolve I know I will regain my composure, put on a smile and get through another day. One step at a time, I was once told. What simple yet sound advice. I live in the moment, grab every opportunity and experience joy, laugh as often as I can, and tenderly kiss those lips whilst embraced in the comforting strong arms of the love of my life, and maybe for just a second, time will magically stand still.

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