This has been a crazy week around here. Two deaths, mother in law visiting, cookie exchange and oh yeah, lupus. While mi vida loca has been swirling around me, I have found that pearl of appreciation for several things in my life. I wanted to share them.
One of the things I appreciate is my family and friends who support me in big ways and small. Seriously. Whether you call me, drop by for a few minutes, or just send me an email, please know that I totally appreciate you and your time. You may not think it is a big thing, but to me, it is HUGE! What a lot of people do not know about me is this: I do not get out of the house but about 5 times a month. No kidding. I am almost house bound with this lupus and fibro and all the rest. I hide it well, but even though I want to go out and do things, I just plainly cannot a lot of the time. Do not feel sorry for me though, because when I can get out I do so with gusto, knowing it may be some timebefore I get out again. I try to get as many things accomplished as I can while I am out. So if you have seen me out and about, you will realize that it is one of the few days I will be out. Say hi! Give me a hug! Small things can mean a lot to those of us chronically ill.
I would like to acknowledge my appreciation for those who not only are included in the above paragraph, but to those who realize what an effort it is to do many things others think of as normal and that others can do without thought. I mean, when I have a limited amount of energy, I have to choose wisely how to use it. There are times I get dressed to go to my meetings or to the store, and just doing that has completely robbed me of all my energy. Yeah, I know, suck it up buttercup. Nope. I could suck it up but then I put myself at risk of pain and more bedrest. It is actually hard for me and my body to reach a balance some days. So, after dressing, I find myself having to listen in by phone for my spiritual meetings or send my husband to the store in my place.
I appreciate it very much when someone gives me credit for doing things I do not normally do. These are the folks who tell me I am worthy of honor and dignity despite my limitations. They do not put me down, but instead lift me up by their encouraging words. They recognize that my efforts may seem small to some but to me they are large. One word of praise, or simply telling me you see my efforts can mean the world to me. You see, many people do not think I should “make over” lupus and all the others diseases I have. They think I should not discuss it at all. I should just go on and forget about it and it will go away. Don’t I wish! I have to deal with this EVERY SINGLE DAY!! Sure, I do not look sick on the outside, but trust me, on the inside I am plenty sick. So before you judge me, walk in my shoes for one day.
I appreciate the fun times I have with friends and family! I am easy to please and/or entertain. Trust me, a simple cup of coffee with a friend can be the medicine I needed that day. My grandkids are good medicine too. Their laughter and love go a long way towards fighting off the dreaded depression that invariably goes hand in hand with chronic illness. These stress busters are very important to me so do not think it is nothing. To me, it is something.
I appreciate those who help me spread the advocacy. It is funny sometimes, that I can strike up a conversation with a stranger who genuinely wants to know about lupus and yet some of those who are closest to me just act like it is nothing to worry about. I have a friend who is undergoing chemo for cancer, and a cousin who is in dialysis for kidney failure. Guess what? Those two people are my heroes and yet, they tell me the same thing! I never asked to be a hero, but it is truly humbling that these who have so many issues just to survive could think the same of me. I had a nurse at my rheumys office who told me that I did not need to do the lupus walk because I was doing enough already with this blog and participating in a drug trial for a new med. She (the nurse) told me that and I totally thought she was crazy for a second. However, she meant that knowing about lupus and the advocacy I do, she felt I did not need to do more and I should let others carry that banner for me. Funny thing is, I feel like I do not do enough for advocacy at all!
So in appreciation of all these things, finally I would like to say I appreciate my heavenly Father who gave me today, and if I wake up tomorrow, I am thankful for that too. I have said it before but I will say it again… if I wake up in pain, at least I know I am alive because I can still “feel”. Pain =life ongoing. To that end I would say that even if I am in pain, I am alive and hopefully I can encourage one person that day in some small way. That is a good day for me!