Sunday, May 2, 2010


This is where the phrase "but you don't look sick" belongs.
And I'm as guilty as everyone else.

Yesterday was the annual Derby Day party at the in-laws. I'd been feeling pretty bad so I wasn't looking forward to it like I had before. There would be a lot of people there and all I wanted to do was throw the covers over my head and sleep the day away. 

I couldn't do that. My future in-law was being presented with the proclamation of a true Kentucky colonel. His ex had burned his and the replacement was coming in time for the party. Not many people can claim this honor but Robert Medcalf can. Winston Churchill is one as well so it's a very distinguished group. His grand-daughter's intended dressed up as "the colonel" and presented the proclamation and his wife presented the plaque. There wasn't a dry eye in the house because this meant the world to him and we couldn't wait to see his reaction to this. It was a bad memory replaced by a very good one.

I got through that and the pain was spiking. My daughter looked at me and asked if I was okay. Of course, I sucked it up and said yes. She walked away and sat with her friends. A couple of other people asked if I was okay. Yes, again.  I guess I was giving it away but I went and got a pain pill and slugged it down. 

It didn't even start to take the edge off.

I met one of my daughter's friends from her workplace. She seemed nice but a little distant. I can understand. It's hard to go to a place where you don't know anyone. I sat with her a few moments and then got up to go into one of the back bedrooms. When I came out my almost son-in-law took one look at me and said, "Mom, are you in pain?" I couldn't fake it any longer. I just looked at him and he sat me down and asked if I wanted to go home. Nope......I could deal with it a little bit longer. The hostess called me over to the woman I'd met earlier and told me that she had Fibromyalgia as well. We looked at each other as if to say, "it don't look sick today either." We got along famously after that. 

We put the guard up so high and when we find a little bit of acceptance we find a living breathing soul who is tortured by this disease.

We all hide very well from the people that love us, from the people that we meet and in social situations. My son-in-law must have caught a glimpse when I was unguarded. That doesn't happen very often. We can't take the chance of the pain monster coming out from the shadows. 

It doesn't do us any good.

It would scare the hell out of everyone else.

1 comment:

  1. Hi Rose,
    Finally I get to read your blog again. I paid for some pc work. Depressing but had to do it.
    I think you did great to attend a function, despite your pain. I missed out on a family gathering, felt very guilty b/c my son wanted to go. I am too tired to pretend I'm okay and put on a public face (reminds me of the narc and I don't want to be that way)-- I know this public face is to spare people our pain, but don't you just get sick of it? Don't you sometimes want to say, no I'm not okay, I'm in severe pain, never get any sleep, my brain is a pile of mush, and I'm very depressed about this!
    I chose not to go to a family gathering b/c I do not feel at home. I feel like too many people there judge me and it seems like they think they are stronger than I am b/c they work while they are tired or they work "because they have too." It hurts me to think they think that I choose disability.
    It hurts to think they think that their houses, cars, children's education, goals for the future, are all something I simply decided I did not want, like they want.
    My sis told me when I applied for disability, "I'm sorry you do not want what we want."
    My dreams and goals, that I once had, were just as important to me as theirs are to them.
    So... I called while they had their gathering to wish my closest nephew happy b'day. He seemed so negative. He said he was looking forward to having his educational loans paid for by 2025. I thought he was joking so I laughed. He was however, quite serious. I told him he topped me off being depressed, and he thought this was funny, but he could not actually laugh, it was like it tried to come out but instead it sounded like it got stuck.
    My point is how can I laugh more than the able-bodied working folks with everything going for them? Do you think all the pain we live in, the fatigue we survive each day, and the rest of all the BS we put up with as a result of chronic illness has given us some sort of warped ability to laugh at it all -- (when we are not home in bed alone and crying, wishing we had a life) --
    My nephew answered and began telling me all about their education, my other nephew's education, and how everyone in the family are almost finished with their higher education(s).
    I thought about all the hospitals my son has been in, all the traumas we've lived through over the past seven years, then how sick I've been, and then, I wondered if he could imagine that just maybe, just maybe I feel a great sense of loss that my son is the only grandchild who didn't get a college degree!
    This is a hard life isn't it?
    I hope you have moments of peace and relief. I wish you so much more.


Please leave a comment!