Not just anyone can do this.
Not just anyone can rule the house but still be in bed.
Not just anyone drags themselves past their limits and then keeps going even further.
Not just anyone will allow snuggling knowing it is going to hurt and that the hurt is intentional.
Not just anyone can be chronic ally sick.
But time and time again when I talk with other parents who are walking similar lives as me. I am continually amazed at how we ROCK this life.
Now granite it takes a while to get to this point and I really never thought I would. I never thought I would get up after tossing and turning most of the night, and say oh its going to be a pills and caffeine day okay got it. I can handle this.
There were times though that I didn’t think I could do it. There were times I was sure I couldn’t do it.
So its been two years since I was laid off from a job I really loved. In four months it will be two years since I filed for SSDI.
When people find out that I stay at home due to chronic pain and illness, there responses vary. Some people say good for you! Thats great! Some people say wow you are so lucky.Some people say you gotta do what you gotta do for you. Some people keep their thoughts to themselves….I think I like those people the best.
This life is not easy. This life is not a choice.
Perhaps it is because I have always enjoyed a challenge and really this is the biggest challenge I have ever faced. It is a daily challenge. Its a daily different challenge.
The other day a woman told me I was so lucky I got to stay home and she was so jealous.
Jealous…… of me? Whatever for?
Jealous of the time I spend in bed unable to participate in activities? Jealous of the time I spend in the bathroom unable to leave? Jealous of the pain that prevents me some days of doing much walking?
Its taken me days to wrap my head around this. I couldn’t figure out what there was to be jealous of.
Then it dawned on me. I do have a pretty glorious life. First of all I am alive, even if I am in pain. Second of all, I take life a bit more seriously and try to stay in the present more and more. Thirdly once I started trying to stay in the present more, I realized I had friends I would never have had without this chronic illness and pain.
Alive what does that even mean? The Merrium-Webster Dictionary says its an adjective. Its having life, not dead or inanimate. Well there are times I feel inanimate but the very action of breathing makes me animate doesn’t it. Hmm..Okay the second one says still in existence, force or operation. I like this one…this one makes me smile and say Yeah I am aren’t I. It also has a second part, which states:Still active in competition with a chance for victory. I really like that one. Because I like competition. I guess that goes back to my love of a challenge. Some days I feel like I am still striving for victory others days not so much, But as long as I am still active in competition then I am still alive.
Staying present is not very easy. Its something that you have to keep reminding yourself to do. Being a parent has a very strange way of doing that all in its own. I have found when I don’t do this, this is when depression starts. I have no illusions, I know I walk a fine line with depression. Its always there just around the corner. If I focus just a little too hard on what I can’t do, its there. So instead I try to find the happy in everything. The miracle of new life in the woodpeckers right outside my window even if they are awfully annoying at six am. The wonderful sound of my daughter laughing at the squirrels antics to annoy the dogs. The wonderful smell of a crock pot cooking dinner all day. Sometimes its even just taking enjoyment of the taste of junk food. Staying present in the moment is a challenge… Did I mention I love a good challenge? And its definitely a good challenge. It enriches my life in ways I never would have seen before.
I know I have brought it up before about friends. The friends I have now are not the ones I thought would still be here. Really the friends I have now are nothing short of amazing. They have seen me at my worst and still love me. To me that is nothing short of amazing. This was one lesson that caught me off guard when I first got sick. I didn’t expect people to abandon me. I know the few people I have let get close again are stuck to me like glue. Just like I am to them.
So yeah I guess this is a very glorious life I live. Its something I need to remember a bit more. To not let small comments take me off guard so much.