Interesting question hard for those with an illness that prevents one from freely going out depending on how our body will react to the outside world and changes daily. I think harder yet for someone who was deemed a social butterfly. Lucky for me I have always been a bit of a loner and like my home/alone time maybe a little too much for others to understand. But even for me I struggle with the need to go out and enjoy life versus the realization of what I am able to do. I also think of all my husband has had to give up. People don't realize or think about how an illness not only effects the person dealing with it but it also has a huge effect on their family too.
For myself I don't think I will ever stop mourning my old life I have learned however to appreciate the glimmer of fleeting moments I receive of my old life. When we are healthy we take everything for granted I no longer take anything for granted and instead try to adapt to a new life with daily changes to what I can and can no longer do. At least my life is still kept interesting by the daily challenge to wake up knowing I could do something yesterday and wonder if I can do the same thing today!
I appreciate the few friends who I can call true friends those that have not left my side. The phone rings less frequently then it use to, the offers of invites out are less frequent as I've had to cancel going out too often at the last minute. But I appreciate those that do call and invite me/us as they understand what those calls mean to me. They also know I don't cancel because I want to but because I truly can't that day, and it has nothing to do with them.
I appreciate the days I can sit at my computer and connect with the outside world and to think that this technology age only came to be a small time ago. I have connected and met people who know exactly my fears and frustration that years ago would never had been possible. There are no support groups one can go to for people with this neurological condition as it is so rare that even the doctors can not make their minds up if you do or do not have, as you have read in my blog. But I will never loose faith that I will hit upon the right doctor. Another glimmer to never loose hope even in my darkest days.
I appreciate the days my body allows me the opportunity to go for short walks like we did a few days ago to the park I may have moved slow and a bit unsteady but it was freeing to walk and be a part of the world. I paid for it later but I would not have changed one minute of our time spent together.
I appreciate a good laugh and lucky I have someone in my life who has the same sense of humor as I. Even on the days he has to help me do simple things like walking when suddenly my body decides it doesn't feel like walking... as he holds me in his arms I've asked him jokingly to put music on so I can pretend that we are dancing as I really am only do this so I could trick him into dancing with me, as we do the most awkward moves towards my ultimate goal at that moment. So You Think You Can Dance have no fear of us winning, but we could give you a good run for your money with moves you could never copy.
I miss not being able to cook up a storm and having people over to" break bread with" as the saying goes. My days of entertaining like I use to are pretty much over but once in a while my body will allow me the small joy of preparing at least part of a meal. And I appreciate those moments.
I appreciate getting to know my aunt that lives in Hawaii her emails and the odd phone call lifts my spirits in ways she may not know until she reads this. I didn't know her well until my mom told her about my illness and she reached out to me. Thank you for becoming a bigger part of my life and sharing your wonderful pictures. One day I want to travel again to Hawaii and meet in person that beautiful grand daughter of yours.
I appreciate the moments I am well enough to help my mom. Those days are less frequent then they use to be, but mean the world to me and to her when I can. I know she feels bad relying on me more then she would like to. Even on days like yesterday when the last thing I wanted to do was go out but knew she had to get to her doctor's appointment I fought my own illness and made it happen out of love and appreciation for all she did and does for me in my life.
Those days to me as she gets older are more precious then she realizes and I will have good memories in years to come to look back on and smile when she is no longer on this earth.
I may not be able to do a lot of the things I use to take for granted and yes I mourn my old life like the person who posted that question to the group. I can have very down days that makes even the strongest person want to give in. However I turn around and rather then mourn my losses in life I put a smile back on my face and continue to strive for the little joys in life. And that my friends is how I answer the question asked. Every person dealing with an illness that will never go away or get better should do the same.
