Shaking My Head

It still amazes me what some people say to me.

We were so thrilled when we got the phone call about the approval for Social Security Disability. Again, it is very rare that a person of my age is approved on the first try especially without an attorney.

Upon hearing the news, one relative said, “Wow. You must really be sick!” This was in the summer of 2006, a year and a half after my diagnosis.

Another relative said she likes to talk with me because I understand her breathing problems. Her lung disease is one of a long, slow decline. It took many years of my explaining the differences for her to finally get it.

I feel like I had to constantly prove that I am ill.

We have not allowed anyone, other than my mom and William, to stay with us as it is exhausting for me. It was just recently that they began to realize that I am not well enough to host a visit. Pressure is on as some want to come and have even suggested that they will stay in a hotel.

Michael says it is fine with him but he worries that I will do too much getting everything ready and all the meals planned and prepared. I want the company but I really don’t want the work.

These are the things that you wish you could still do but have learned that you can no longer handle.

Frustrating.

Next: Pretending