Tuesday, June 7, 2011

Waiting for the day

Every morning I receive an email with the latest medical research and discoveries. It isn't abnormal to have something appear at least once a week related to Alzheimer's. As I've said before there are a lot of what if's, a lot of puzzle pieces, but no real answers yet.

Today was no different when I read "New Direction in Alzheimer's Research.". A new finding, yes. An answer? No, not yet.
New direction in Alzheimer's research

As an eldercare professional and advocate I look for the discoveries and answers to devastating diseases like Alzheimer's, Parkinson's, Macular Degeneration. All diseases that typically target aging adults, but as a chronically sick woman I also look for the discoveries and answers to Sjogren's Syndrome, and Chronic Fatigue, the 2 illnesses that have changed my life. I wish there was a list of the companies, universities, and scientists that are leading research in a particular disease, so I could keep up to date with each, but there is no such list. I just subscribe to Science Daily Health and count on them to forward the latest news.

If I know someone in particular who is suffering with some illness and some relatively good information in the way of research comes up on my Science Daily Health email, I will forward it on. I also post a lot of the news on Twitter, so maybe it can help someone find an area of the country, a hospital, research team, or physician that they may find answers. I subscribe to a couple different chronic illness message boards, where many subscribers are desperate for answers. I know that feeling of desperation when I spent 5 years trying to get diagnosed with the mystery illnesses that stole my life as I knew it. I can only imagine the desperation from an adoring husband or wife whose spouse's life is slipping away to Alzheimer's disease. I also know the feeling of being filled with hope, only to be entirely disappointed, by what I call the crash. The hope/crash cycle.

I went through the hope/crash cycle many times while I spent 5 years going from doctor to doctor to try and figure out what was causing me to be so sick. I would meet a doctor who was pretty sure he had the answer, filling me with hope, only to send me from their office saying "I don't know what's wrong with you." After my diagnosis I not only was relieved to know what I had but I was then able to accept the fact that I would remain sick and my life would be very different from my life before illness. I decided to accept the fact that I would most likely remain sick the rest of my life. Truthfully that is easier than not knowing what I was dealing with or would face.

When I was able to accept the diagnosis and life change I stopped searching for answers. I stopped hanging hope on every little thing that appeared to be a possible answer. I found the hope
/crash cycle to be too much for me to continue to put myself through. I wonder how many families and patients are out there going through the hope/crash cycle that wears away at themselves and their happiness? I certainly don't propose to have all the answers, or believe what works for one, works for everyone, but I do believe we can do a lot of damage to ourselves by constantly hoping for answers that won't necessarily come. Not saying we should be without hope, just saying we need a very realistic balance.

Just as anyone who is sick with an incurable illness, I would love to see an effective treatment or cure for what I have, but I don't expect it. I do hope to one day be very surprised if an answer comes. If the breakthrough of all breakthroughs happens and I can return to my once active, healthy life, I would be thrilled. Until then I just concentrate on living my life the best I can, and as happy as I can. The energy spent on happiness is much more beneficial to my daily life than spending the energy waiting for something that may never come.

All of us have a choice in how we handle any chronic illness within ourselves or a family member. We can watch our lives pass us by while we become stagnant in hope, or we can live. Really live with what we have to deal with, to the best of our ability. You can go to any chronic message board or even chronic illness group on Facebook and quickly pick out those who are miserable
and waiting for the cure, and the ones who have decided to be happy in their circumstances. If you haven't made your choice, or the choice you have made thus far isn't working for you or your life, just review the 2 groups on a couple message boards, and decide which group you want to be in.

Don't wait for the day to be happy. Today is the only day we have, tomorrow is not promised. Be happy today.

1 comment:

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