Unwell.........

Ah, that says it all about me I think. Its hard for people to get an understanding of what I go through because I look perfectly normal. My skin is a nice healthy shade of dark brown, my eyes are bright and sparkle, and I look like anyone you would meet on the street. I don’t have any parts that are hanging off or bleeding, yet I remain sicker than most people could ever imagine.

Its a little weird discussing my illness with anyone. There is always the look of horror and concern on the faces of anyone you tell. I don’t like to worry and upset people with that. But its a fact of my life that I have to deal with each day. I have to be sure to explain it thoroughly to friends that I might spend time with up front. That way, they will know what to do in case of an emergency. They also know that plans can get cancelled if I am not able to attend as planned.

Being chronically ill is a challenge. But the challenge is way more than the diseases themselves. Most of the challenge comes from all of the knock on effects that being ill has. For example, I have to plan each and every single thing I do carefully. I cant just walk into a restaurant and sit wherever I would like. I try to position myself in the best way I can, away from lights, and noise and even ceiling fans. I have to be careful of the movies I go to see due to flashing lights and fast moving photography. Sometimes I cant even stand to do the basics like a grocery store, or a mall because of the lighting, crowds and smells. That is ok for me, but I feel sorry for my friends and family who have to try and understand this on a regular basis.

I have really bizarre needs too like constant hydration. I sometimes have to stop every few minutes and get a drink so that my body doesn’t become dehydrated more than it can handle. I think that could get a bit much for others to constantly have to stop and wait for me to take care of whatever it is that I need in that moment.

Even those people who are really close to me don’t always get it. I mean, its so vast and bizarre that the doctors cant even figure it all out, how can a normal lay person do so?

The loss of ones ability to be independent is probably the hardest challenge to cope with. I cant just get in my car and drive to wherever I want without letting everyone know. They worry the entire time I am gone. Sometimes I feel too sick to carry out basic things like cooking and taking care of myself. So I have to ask for help. And for someone like me who is very independent minded, that is very hard. I have to give my husband so much credit as he just takes it all in his stride and never ever complains. He’s amazing.

I think that people wonder if my diseases are hypochondria-cal at times. I mean, no one has ever really heard of my diseases. They are so rare. Sometimes I wish I had something as simple as cancer so at least people can say OK she has cancer… and that is real. Instead, I give them the whole outline of what happens in my body and it really doesn’t make much sense. There is no one answer to any of the bizarre stuff that I experience, and its confusing.

I worry about being less than in the world. Being disabled is a very strange label to have. It means that you are less able. But does that make me less of a person? I try and make up for this by not complaining about things. I will go along with the program so that I don’t interfere with anyone else’s plans or good time. I always figure that no one wants to be with someone who is constantly moaning and groaning about whatever. So instead, I have sort of become a hermit with my personal feelings and circumstances. Even with my closest friends I have a hard time discussing these issues. I have to force myself to tell them each time I get bad news. And believe me, they all get very aggravated with my silence.

The other thing that is frustrating is that this is a forever thing. Explaining to people that no… there is no cure is a very hard thing. There is no pill, no real therapy, or scientific brake-through that will change how I feel. The medicines that I am forced to take grudgingly and sparingly are just to dull the pain and no more. It was a hard thing for me to come to terms with. This is it. Got to make the best of the good days.

My faith in God has helped me through all of this. He has given me a sense of calm and acceptance that I am most grateful for. This experience has given me so many gifts that I cant even name. I smile alot more now. I laugh freely and I’m alot less uptight and I no longer see the world in black and white. Maybe that’s just age, or maybe its a gift of wisdom from God. The truth is that I don’t really know. All I know is that I actually like myself these days more than I ever have in my life. And that in itself is the greatest gift of all.