THE BLOG

How Are You?

16/01/2014 12:32 GMT | Updated 17/03/2014 09:59 GMT

When people ask me "How are you?" I have to think twice, not because I don't know, but often am not sure what they want to hear. Some ask out of common courtesy, simply being polite, but would rather I answer "I'm fine thank you" than hear a long account; perish the thought of hearing the truth and understanding the full picture of living with chronic disease. There are those who genuinely care, want to know; therefore I can speak frankly and openly, but these are a special few.

I knew a lady who was a perpetual hypochondriac, and it didn't matter what disease or illness you had, she had it too, or at the very least something similar, only worse, much worse! I quickly understood it was best to avoid the question altogether, for I'd undoubtedly be subjected to a torrent in great detail claiming what she allegedly had, yet was totally unsubstantiated by any medical practitioner. I would bite my tongue, but many times, not meaning to, those fatal three words "How are you?" would automatically spill forth before I could stop myself. Brought up with good manners, I find it incredibly difficult not to ask this question.

My husband took me to a nearby shopping centre where the car park is so large, one has to pay close attention, otherwise you'll never find the car again, unless your car is a bright green that sticks out a mile. If unlucky enough to only find parking at the far end, it's a jolly long walk to the entrance. It's certainly far enough to walk off a latte coffee and maybe even a sticky bun! I have a disabled badge, so we parked in the designated area close to the entrance. As I struggled to swing my legs out of the car in an ungainly but highly perfected fashion, a woman passing by stopped to speak to me. "Aren't you lucky getting to park right by the doors?" she said with a big smile, glancing with envy at my disabled badge displayed on the windscreen. My mouth dropped open, but before I could manage a rebuttal she had hurried on her way. Yes I appreciate very much having this badge that allows me to park in disabled spots, but quite frankly I would give anything not to qualify for this privilege.

As Parkinson's disease progresses, I have to adjust my life accordingly. I can no longer do what I did a few years ago. Anyone familiar with Parkinson's, would understand. For those unfamiliar, it's hard to envisage some of the difficulties that occur during the course of a normal day. To give you a simple example; a close friend sent me a text message, to which I replied on my dinosaur of a mobile phone with one word "Thnks". Seeing I'd answered with one solitary word, she became worried I was having a bad day and phoned me. I wasn't having a bad day, but explained texting is extremely challenging due to Parkinson's and poor dexterity in my fingers. This particular issue had not arisen before, but now she knows!

We celebrated our silver wedding anniversary last week and I was determined to make it a wonderful memorable day. Due to Parkinson's an evening party was out of the question, as by 8 pm. I'm already shattered. Suffering extreme fatigue from both diseases certainly wrecks our social life, leaving us frustratingly limited as the morning hours are when I'm at my best, so we settled on an anniversary brunch.

With great resolve, using every ounce of energy, I told Parkinson's to take a hike for the day so I could enjoy our anniversary. In certain circumstances, I believe anything is possible - it's mind over matter - and nothing was going to stand in my way of having a good time. I don't know whether it was adrenaline, excitement or sheer strength of determination, but I refused to allow Parkinson's to spoil our special day. My husband was astonished and got a glimpse of the woman he'd married 25 years ago. For a few hours with great willpower I defiantly kept Parkinson's under wraps but eventually around 3 pm. I could keep up the battle no longer and started to wilt.

Once our guests had left, I suddenly collapsed into bed as fatigue and Parkinson's returned with full vengeance. I was exhausted, and it took a few days to recover. However the tremendous effort was worthwhile, as I still came out a winner for I had spent a whole morning celebrating, which is now a precious memory that Parkinson's can never steal from me. If you were to ask me today "How are you?" I would have to answer "Very tired, but exceedingly happy".

http://www.elainebenton.net/