Social life? HA!

Being married to someone with a chronic disease changes your life. There are the obvious changes, like having to care for them as well as your children... but then there are some changes that you didn't even realize would ever come or didn't at first recognize as part of the disease.

The hardest change for me has been my social life. Not just because you are always busy at doctor appointments and caring for the family all on your own... but you find yourself avoiding joining in with new groups of friends or doing social activities. With Mike, his behavior in public can be very embarrassing and sometimes inappropriate. Until recently we didn't have a diagnosis - so I didn't have any explanation to give as to why I had this jerk along with me. I dropped out of MOPS and bible studies, because I couldn't really fully engage in relationships without them meeting and seeing him and wondering what on earth was wrong with us. I would like to say that I wasn't embarrassed of him - but I was. Not because he was sick, but because I couldn't give them an explanation of what was wrong.

He also no longer has friends at work, so we aren't being invited to work socials or to eat out with other couples. This was a huge change and a devastating one for me. Prior to his disease taking over, he was very popular and well loved by his coworkers. We were out every weekend with other couples and attending every work social event. People loved us! Now, we know nobody. We don't go anywhere or do anything out side of the house (without a major melt down and a humiliating public display).

Now that we (kinda) have a diagnosis for his disease, I am feeling more confident about rejoining some groups like MOPS or a bible study. I now can tell them "my husband has a degenerative neurological disorder, much like Alzheimers, that makes his behavior very strange". I'm not embarrassed of his behavior anymore, because I know why he behaves like that and I can explain to others why he does. So now my only excuse for not joining those groups is having no free time - seriously, I have zero down time right now! Living with someone who has a chronic disease is exhausting! And two kids under the age of 5 sure is exhausting as well.

But there is a light at the end of this tunnel - the medical discharge process is underway again! Once completed we will be moving back home to PA to be near my family. I will have friends and family to help us and support us, and baby sit the kids AND the husband so I can actually have a few free minutes to myself! Hallelujah! Lets get this thing done!