FIRST PERSON: THE DAILY STRUGGLE
By Dan Brady
My daily struggle with my disease is relentless and my future is uncertain. Nuerological disarray affects everything I do. My vision is, at times, perfectly normal. It also gives me, with no warning, double or blurry vision. I often say the wrong word since my cognition is affected and it has become too challenging to simply balance the checkbook and I feel at a loss to calculate the precentage of a simple tip. I often feel too hot or too cold and sometimes feel both simutaneously. My blood pressure drops suddenly and I teeter on the brink of fainting. The pain is unrelenting.
Why is all this happening? My physician has explained that my neural pathways are disorganized much like, he explained, a very complex highway system with overpasses, interections, access and exit ramps that all lead nowhere. It is incredibly tiring to just carry on a coversation at times and my fatigue often is overwhelming. The worst place for me is a crowded place. Sensory overload spikes my anxiety and masking my symptoms becomes much more difficult.
Every day there is something that happens, whether it be large or small, that triggers my frustation and anger about what has happened to me. I am no longer a successful businessman who conducts life with aplomb. Instead, I feel angry about my losses and know my children and grandchildren will never know the "real" me but will only remember me as being dependent and angry at the illness that has ripped apart the fabric of my life and lift it in tatters. I can only hope that tommorrow is no worse than today.
Do you recognize the pain, the cognitive problems, the hypotension and other neurological symptoms and the anxiety? Do you recognize what it is like to be trapped in your own body and to be betrayed by your own mind? But I'm better off than you. I do not have chronic fatigue syndrome. I have Parkinson's disease. The name, alone, at least affords me some pathos and credibility. It could well be termed the "shaky disease". My brother, who has "CFS", is afforded no credibility although we both ran successful businesses at one point in our former lives. Although our struggles are so similar, he finds it less challenging than I to change a lightbulb yet he endures pain that is so much worse. He receives little of the empathy and offers for help that I receive. After all, everyone assumes that he only has a "fatigue" problem even though I am the one that must nap each day. Our government has added an extra lane to that complex highway system for him that affords him less compassion and less understanding since they renamed myalgic encephalomyelitis "chronic fatigue syndrome" and then proceeded to dismantle the main aspects of the disease. There are many competing for advances in research for my disease. He has just your foundation to offer him hope. There is a huge difference even though we both have neurological diseases and our suffering is so similar.
Dan included a contribution toward CFIDS research when he submitted the above article.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606