Sunday, August 21, 2011

One Small Step For Most - One Giant Leap For The Chroncially Ill

Here I sit waiting for anther doctors appointment and thinking what better time to sit down and write a little educational note. You must know by now how I love to educate all of you :)

It is so strange to me how one minute, hour, day, or week I can be feeling really ill and POOF it all turns around and the sun comes out and things clear up to some degree. Although that pesky little friend of mine, chronic illness, is always around the corner watching me waiting for his chance to jump out and make his ugly appearance.
I am finally having a pretty OK, (good?) week and hoping this note doesn't cause the goodness to circle around and bite me in the butt. When ever I tell Rich I feel good he puts his hand up and says, "don't say that you know what happens when you say that." Ya I know!

Even when I say I am good I still struggle from minute to minute. I can be fine sitting down doing nothing and get up to start doing something and WHAM my body forces me to go sit back down. This has to be the worst part of being ill on a daily basis. I mean really, my mind would love nothing better than to be able to go outside and walk, just a mile, but my body tells me otherwise. Or pick a few weeds in the garden or, oh never mind you get the just.

I get in the shower only to have to feel like I ran a twenty five mile marathon when I get out. Ah to dream, if only I knew what it felt like to run. Holding my arms up long enough to wash my hair should have earned me a gold metal by now. It hasn't. Shaving ahahah what a joy that is. Ok enough said there.

Then there is dinner. The thought of what a process that is wears me body out by just thinking of all that is involved. These days dinner has become simple. Chicken breast and salad or something in the crock pot. You would not believe how much physical energy it takes to make a decent meal. The worst part of it is if I do decide to bite the bullet and cook by the time we sit down to eat I can't even eat that much because it takes even more energy to chew and swallow. It is an exhausting process to say the least. Then, there is the clean up but we are not even going to go there. Ok for a second, clean up usually waits a bit until I can rest on the couch or it involves me watching my wonderful husband who is dog tired from a long day at work do it. All the while listening to him telling me you go rest dear I will do it I don't mind, and meaning it. While tears are rolling down my face.

Then there is the shopping that needs to be done tonight. As usual, hard working Rich will be the pilot as we go but it is just so frustrating. The way I feel right now it seems I may not be able to go but I am going to fight my hardest to try. It is hard to admit that sometimes you just have to give into the body and accept what it is telling you, as hard as that is. After the doctor appt, I will probably be washed out. But then again, hopefully the shot of Methotrexate I injected yesterday will kick in and I will feel better. By the way Methotrexate is a drug used for chemo given in lower doses for autoimmune disease. (I like saying I am on Meth it makes me laugh) So for twenty four hours after my shot I feel like I was hit by a bus, literally! Tomorrow will be better though, so I focus on tomorrow! When I can see again and have more energy!

Seems everything I do these days is all little steps to reach the goal in mind. I mean I always have the goal in mind, using the doctor appt as the goal/example. All of my goals have to be broken into manageable baby steps. Here is how it usually goes: The shower, rest. The hair, rest. The makeup, rest. Get dressed, rest. Drive, rest. Walk into the office and check in, rest. See doc, rest. Get back to car, rest. Drive home, rest. Now for a normal person it is just a doctors appt on top of a million other things that must get done that day for me a doctors appt. IS my whole day and I will be exhausted from it. This is no lie, this is life for me.

After reading this you can understand why when you are chronically ill you learn to live in your own little bubble. No one really understands. Oh they try but we live in a world of healthy people. When I am out with other people I have to put on the face. The face of health. The face that every thing is ok and I am doing just fine. That is why, I always "look so good." It hides the pain of living sick every minute of every day even on the good ones. So here is to being that great pretender. I am an expert!

I hope and pray this is a good day for you and that you appreciate your health more than you already do and if you don't, start to today. Don't ever take it for granted because  it can all change in an instant. If it does, contact me, I will understand!

God is good even when things are not so good!!


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