It turns out this weekend was pretty much a lost weekend (as usual). I've slept more hours than I've been awake. On the upside, on Saturday I managed to accompany my husband Kenny to a backyard barbecue one of his colleagues from work hosted. Because I knew the event was important to him (and because I often miss out on social occasions due to my constant exhaustion), I slept in late and took a three-hour nap up until we had to leave the house. This way I would have enough energy to attend. We got to the barbecue late and left early, but the important point is that we made it. I made it.
Social gatherings are exhausting for me, especially when there are a lot of new people to meet. It is mentally and physically taxing to remember new names and faces, shake lots of hands, and have intelligent conversations. If there are a lot of people in an enclosed space, noise can become overwhelming (my disease has caused me to become sensitive to light and sound). My brain has trouble filtering out extraneous sounds, so I regularly have trouble participating in conversations when there is a lot going on in terms of noise. Background music is truly painful. Fortunately, the gathering yesterday was outside and there was no music playing, so the noise level was quite tolerable.
I am not shy, nor do I fear crowds. (In fact, I even enjoy public-speaking.) From childhood through college I always had great friends. Unfortunately, my disease has forced me to become hermit-like. What little energy I have is reserved for the workweek, so weekends are spent recuperating at home. I have very few friends outside work, and what friends I do have are really more like friendly acquaintances. My husband is my best friend (thank goodness for him). I would love to have more active friendships, but I just don't have the energy. I don't even have the energy to socialize with my own family.
This disease has taken away so much and given me so little. At first I had a very difficult time adjusting to my new way of life. I even went through a period of mourning for all that I had lost. It was almost as if someone had died, and I was going through the stages of grief...all the way up to acceptance and hope.
Now I live a happy life. To be clear, I am not happy that I have my disease by any means (and I still miss being able to do many things), but I now have a sense of hope for the future and I do what I can to make the most out of life. Though it exhausts me beyond belief, I love my job and enjoy what I do. My husband and I go on a trip at least once a year (even if it's just a weekend), and we always try to buy Christmas and birthday presents for our younger relatives. We watch lots of TV and movies (thanks, Netflix!), and we regularly donate money (and sometimes things) to various charities. We also laugh a lot.
The greatest thing this disease has given me is an increased sense of compassion for others. It has also gotten me involved in advocacy, and the advocacy fuels my hope. I am looking forward to a bright future.