What I Wish People Could Understand

Living a chronically ill life in a healthy world is hard. After the past few days I began to think hard once again on this subject. I try my hardest not to do this as I have accustomed to the normal world and know what to and what not to expect from it. Why then, at times like the last few days, do I start to dissect it over and over again? I don't know. I guess it is the fact that even though I look healthy I know I'm not while everyone else see's the put together part and has no idea what so ever what I and other chronically ill people live with. Once again, no worries, I am here to educate.

I am still in wedding recovery mode but I would do it all over in a minute. If you have been following me you know I am off all my arthritis drugs now. If I am able to stay on my feet I do fine fine. It keeps the joints oiled somehow but I have no idea how. The absolute hardest part is sleeping. The pain is keeping me awake all night long. I am stiff as a board and my brain wakes me up screaming at me telling me to move. The worst part is by the time I am finally able to sleep it is early morning so then I end up in bed until ten or eleven, except for the past two days. The first thing I wish people could understand is you do not call a chronically ill person before 10 AM, even then you are pushing it. My nights are not good so when I finally get to the stage of sleep where I can actually sleep I don't need the phone ringing to wake me up. Fortunately my friends and family understand this but how do you get the stupid telemarketers to understand this? Or the mail order prescription place? Or the.........insert whoever else who doesn't get it here. I know when the phone rings that early I need to get up and check it because if it is my family and there is an emergency I want to know, not an issue for me when it is them. But when I get out of bed and make it over to the phone moaning, groaning, stretching, running into and holding onto the walls to finally get there and see it is no one who really needs me I get angry. My mind goes to that crap place where if I could reach through the cord I would grab the person and wrap it either the cord or my hands around their neck. Yes, I do have an evil side and when it comes out it isn't pretty. So lesson #1 DO NOT MESS WITH MY SLEEP it is not a great way to start the day because I am pretty sure I would have slept until noon today since the same thing happened yesterday morning. Sleep is crucial!

The next thing I wish people knew was that the phone call forced me to wake up and call back the person who called right away. Half asleep and still in pain it had to be done. It was like a business call where I had to do some thinking. Calls like these to most people are not a big deal, for the chronically ill they are exhausting. On the phone for almost an hour and I feel like I need to go back to bed especially since I feel like I am still there anyways. Time to the chronically ill is precious even a tiny amount of time on the phone can wear us out. Yes, I know, it makes no sense to some but to those of you who live it, you understand perfectly. #2 Understand ill people get wore out very quickly so make you time with them short and to the point,

The next adventure happened not much after I did the business part of the day. I turned on the computer and guess what? No internet connection. Of course in my head I am thinking this is going to be a great day.
It seems with every storm there is some issue here with our internet or our television. So I did what needed to be done and got it working once again. By the time I came back up stairs the tv was working and after it goes out and reboots it always goes to the Christian channel. There stood a guy with a piece of blueish gray cloth asking people to send in a donation and they would send you the blue cloth which was sure to cure your cancer if you shoved it down your shirt and kept it with you all day. Are you friggin kidding me? This kind of mumbo jumbo drives me mad and I'm pretty sure if I could have put my hands through the tv I would have strangled him with my bare hands too. I believe, I pray, I pray for others, I believe in miracles but I don't believe sending in a donation into somewhere is going to cure you. I can't believe a piece of fabric is going to cure you. Sure it might comfort you if you believe it to but cure you hummmmm. What a racket they have going. Plus, my biggest question is, "What do you tell those people who keep your stupid cloth in their shirt and still die?" I wish people could understand these lies they are told. God doesn't work like this, at least in what I have witnessed in my life. #3 Don't fall into the traps that make people rich. I know it may be easy for the ill to do so especially if they have no hope left. Your hope has to be in God and in your beliefs not in what a baldy on tv tells you.

This was just the beginning of the day. I have been up for and hour and a half. Crabby? Yup as I wonder how many other people and what other nonsense is going to make me crazy today? It seems when the day starts off bad the rest of the day follows but I have hope. I haven't looked at my facebook yet and I am sure I will get uplifted there, I always do in one way or anther. It is my friends who give me strength to get through my hard times and the people who cause me grief are the ones I stay away from. I can't afford anymore negative then already comes my way. The pain and living with it is bad enough I can't waste precious energy on negative people or things that surround me. I will forget this morning. I will move on and make it a better day, pain and all. I will be thankful for the people who understand me but I sure wish the ones who didn't would at least try. #4 Try to understand someone not by your standards but by theirs.

God Bless!

Dianne