June 17, 2017

Greetings My Friend, One of the things I am noticing with those of us who have chronic illness' is the mourning we go through. I discovered the need as I struggled with my declining ability to walk along with the exhaustion that goes with chronic illness'. My journey to a diagnosis was 6 years or more. After I retired my health began to decline although with the passage of time I realize it started after I had cancer, I could never fully come back to what I was before I went through radiation. Last fall I finally had a diagnosis that made sense so by then I had fairly much come to terms with my declining gait issues and chronic fatigue. One way to attempt to learn about my disease was to join online support groups I was given two other diagnosis before I was given Parkinson's Disease so I joined Ataxia and Chiari Malformation groups.With each group I noticed the anger people had and the confusion. I even started out with anger with my first group CM although with each new group afterward I found myself being less angry to the point when I joined the PD support group I felt like I had the answer to my problem and that feeling of I know what is wrong with me and I was ready to get to work on how to live the best I could with what I had. I give God the credit for bringing me through all of the stages of my grief and then holding my hand as I try to learn about my disease. My discovery at this point is more often than not we are given a diagnosis with little to no information on what to expect and the main discussion is the latest symptoms then I am given more medication. I find a lot of additional information from my support groups and doing research online. At this point though I feel I have moved from mourning to striving acceptance with the goal of being as positive as I am able to be. God has always helped me process each stage of my life I am in including PD so as I enter into each stage of my disease I know God is right beside me. I have finally found a great support network here in Virginia where we moved 8 years ago which helps me a whole lot. I still would love to be involved with a physical support group for PD although at this point there doesn't seem to be one in our more rural area. I have also learned what slowing my pace down looks like, I used to rest 10 minutes before getting up to work again only to discover I was wore out a few minutes later. Today I know I need to stop for a few hours each afternoon, often taking a nap before I can get up and get busy again. These are the things I wish I understood more fully as I kept declining with my energy. Sharing helps me find that middle ground, I learned from my time in VT last year my 10 minute rest period was too short. I was trying to work with the mindset of a well bodied person in a body that was becoming disabled. Some people are thrust into a disabled body all at once such as in an accident, my disabled body has been a process of decline. Along the way I had good meaning friends try to point out that if I would try harder or not nap so much which was discouraging because I was already having that discussion in my own mind. At this point I operate on a "one day at a time" process then I tell myself "and that is okay" when I cannot do something. May God bless you and keep you make His face shine on you. Love Janet