I have always been thankful for everything I have in life including 29 years of marriage to Dave, 3 beautiful daughters, 2 sisters and their husbands and children, cousins and many friends. What I am not thankful for is Late Stage Lyme disease. I do not understand what lessons I am learning from the chronic suffering, the endless medications, the loss of my ability to work or drive 5 years ago, having to go on disability and still having trouble making ends meet. I have never waivered in my faith and do believe that there is a reason for everything we go through in life. I just never imagined this would be an all-encompassing disease involving the help of so many people just to get through the day.
I have learned that I am not indispensable; people can feed themselves, do their own laundry, food shop, etc. That was important. I know that I have had to learn to live my life differently and make choices that I don’t always want to, but have to for my own health. It is very hard to start to withdraw socially as lyme causes excess anxiety and panic, but also it is very tiring to go to parties and gatherings with a lot of people where you need to put on your “face” and try to act better than you feel. I am not one to want to spend a lot of time talking about how I am feeling. That has caused problems with family and friends as they cannot read my mind. Friends love to say, “But you look so good”, and I know they mean well and do not have it in me to tell them that they are only seeing what I want them to see. My husband has learned a whole different meaning of patience as he has to stay calm while he tries to decipher stories that I start in the middle, why I have trouble writing a grocery list, why I can’t just answer a simple question. Who wouldn’t be frustrated – I know I am!
I thought I was going along with life as I should: working in Pediatrics for 19 years and loving almost everyday; taking care of elderly relatives as it became necessary and being a good Mom and wife. I thought I had learned a lot about empathy and have always been humble. My best quality if you asked me was my humor – to make people laugh makes me happy. Sometimes my sarcasm was a little over the top, but it hit the mark. I still have that ability and even try to make the doctors laugh.
As this is my first blog, I’m trying to think of how I will go forward. Should I try to educate, tell my story or maybe do both. If anyone sees this and has any ideas they would be appreciated.