Yesterday I posted a video to my YouTube Channel for a health update on me. People on my channel are always asking and since it had been a while I thought it was time.
In that video I talked about what my plan of action is and I may have made it sound like it’s simple but I am here to tell you, it’s not. The one thing I will do throughout is rely on the Lord to carry me, show me, heal me. I will Trust In Him. Sounds easy doesn’t it?
Some of the comments people left included how they believed I have a deep faith etc. I’d like to think I do but the truth is, for as much faith as I may have it’s not easy trusting in the Lord. It means giving up total control over things you believe you’ve always had control over when in reality you never had but we as humans think we control everything in our own lives. So because of this thinking we all seem to have, when it comes time to hand it back to the One who gave it to us to begin with there is resistance as if it were always ours. It feels like we are putting our lives in the hands of God (where it’s always been) but what will He do with it? What He’s always wanted to. Lead us, guide us.
I know God will care for me and allow and permit what He sees fit to even if I don’t understand it but even knowing this and believing this will all my heart it’s still frightening. It’s still feels a little bit ‘unknown’. I thought in my video I also came off as having this “well it is what it is and will be and I’ll deal with it” frame of mind. This is mostly true but I will tell you I don’t always “deal” with it. As a matter of fact I’ve run from it for the last thirteen years and I am still as scared as I was when first diagnosed twenty – two years ago.
Sometimes I think I make my life look like I am handling things just fine when it reality I don’t. Each day is a fight between my body and my mind. Each morning I wake up tired as if I haven’t slept at all when in fact I slept six or seven hours. I go to bed in pain and I wake up in pain. Some have said, ” I don’t know how you do it not having been able to eat a solid meal in thirteen years. My answer is always , “well you’d be surprised what you can get used to when you have no choice”.
That is also mostly true but the whole truth is, I am always hungry. I am always wanting a cheeseburger, a piece of pizza. I salivate sometimes when I finish cooking a meal for my husband. I go to bed hungry and I wake up hungry a lot of times. It’s not easy going to a friends or an event where here in America it’s centered around food, dinners, community breaking of the bread together. So yes, you can get used to something if you have no choice but it’s never 100% and it always bothers you. You always yearn to be able to do that which you can no longer do. You always wish and pray God will just swoop in and take it all away and you’ll wake up and be able to have a huge breakfast of eggs, bacon and toast.
Each day is filled with uncertainty because I may feel fine one moment and the very next my head is pounding and my body feels like it’s been run over by a bus and all the plans I had lined up are now sidelined because I need to rest.. At times, a lot of times, the simplest thing can be the hardest thing for me. Taking a shower, reading a book, walking, talking on the phone. All things most of us take for granted when we are well.
Then there is the isolation that comes from being chronically ill. Friends are few and far between if there are any at all. There is no social life because those who are not ill stop sending invites because you either haven’t accepted in the past or canceled at the last minute (both because you were ill ) or finally because they don’t want to take on a friendship with someone who is ill all the time and can’t participate in the activities most can.
I know this isolation very well. When I first began getting sick some friends still stuck around but slowly, one by one they disappeared. When we moved from the North to the South meeting people was not easy. We have met a few people since moving and all of them with the exception of two have never once ever asked to stop by, invited me to their home, never suggested meeting for a while even in a park on a nice day just to sit and talk since I can’t walk distances. No one has ever offered any kind of help in the way of could they run an errand, do you need help in the house, do we need dinner one night, can we offer to take you somewhere.
The sad reality is, most people, are busy in their lives and too busy to stop to offer a kindness to one less fortunate. I don’t say this because I am bitter or angry. I am neither of those but I am, a realist. This is the sad truth about being chronically ill. Eventually you don’t feel part of the ‘normal’ world anymore. You are living in your own isolated world. An yes, it gets lonely but it seems to be the nature of the beast.
So you see, my attitude isn’t always on the up and up and my days aren’t always good. I can’t always just “push through it” and the health issue’s I do have frighten me, frustrate me and yes, make me feel alone a lot of the time. I know there are many out there who suffer in the same way so in spirit I am not alone but in reality I am.
There is much more I could write but I fear I have bored you long enough and I am not even sure if this post made any sense.
Until next time……