Hi. I have not written in a couple of days. Sort of unusual as I am the chatty sort. I have been working. Crazy busy with work. Taking five exercise classes a week plus a Beastie Baby walk every day we have even marginally decent weather. Baby lives for her walkies and getting to ‘read’ her pee mail at the dog park. Life has been full of routine stuff. Nothing to write about.
Then it dawned upon me. Having nothing to write about is something to write about!
I think I wrote about this once before. I remember being a newbie with AMD and wondering how I could ever, ever adjust. Did not seem possible I could get used to having what is basically a chronic illness, a disability. Let me tell you, I am NOT the disability type!
I was afraid that once the flurry of services stopped and I had all the toys and skills anyone could give me, once the momentum died, there would be nothing.
Not exactly the case. Has the deterioration stopped? I could only wish it were so. But right now I have a lot of functional vision and there has not been another precipitous drop. (Cross fingers, Cross toes, Cross eyes.) Will I be freaking if that happens again? Is the Pope Catholic ? Let’s not buy trouble. Mindfulness says live in the now.
Have I stopped looking and hoping and praying and nagging relentlessly for some sort of effective treatment? That is a big no.
But right now AMD and I have established a bit of a truce. I am living with it.
MedlinePlus has an article on living with chronic illness. They talk about the fear, anger and embarrassment as well as feeling like you have become someone else that you don’t really know and may not have even picked for a friend. They say chronic illness becomes the new normal. It just takes time to adjust.
A progressive disease such as AMD may have belly-dropping declines separated by long periods of stability. It is during these periods of stability that you pick yourself up and try to re-establish some sort of a life. Significant adjustments may be required.
There are also those small, cumulative changes. These require small, cumulative adjustments over time.
The point of their article and the point of this page is : most of the time we do adjust. It stinks but we get used to it. Chronic conditions can become the new normal. We can learn to cope.
We can also learn to see the silver lining in our particular cloud.
Right now I am in the beginning stages of a campaign to find someone to take me along downhill skiing. I was asking some of the younger girls in yoga if they ski or know anyone who does ski. I need a ride to the slope this winter. Any slope. I made the comment I had approached the local ski club via email but I thought they were thinking I was a lot more blind than I actually am. Thinking that they don’t want a babysitting job.
A person I have seen but do not know asked if my vision was why I could not drive. She also asked how I could see to ski. I explained to her it is a central loss and, while I could see most of her, she did “not have a face”.
The response? “That could be a positive”! Do you think she knows a lot of unattractive people?
And on that note, I am out of here!