I have made some strides in my goals but not nearly as many as I would like to. Since about Sunday evening I have been able to pray the Rosary every night before I go to sleep. What's interesting is I have actually noticed it has helped with my ability to sleep. Most of the time it takes me at least an hour to fall asleep. If I pray the Rosary, I can usually cut that time in half on a really good night. That has helped a lot with my morale. As most people know, a person without sleep is not a pretty sight. However, when you have an energy wasting disease like I do, sleep means much more to you than you can possibly explain.
Anyway, this week has been very challenging as far as work and school are concerned. I am really enjoying my classes and as far as I know I am doing very well in the also. Work is very difficult lately because my energy levels have been low and my pain levels incredibly high. I'm doing my best to do as much as I can safely, but I am continuing to push myself to scary levels. If I keep this up, I will be crashing in no time at all. That scares me more than I can explain. I love my residents and I love my job. What I don't love is how hard I have to push myself to get everything done. I find myself doing way more than any sane person should, and I also think of those residents who need their baths and need good, compassionate care. That, my friends is why I am a caregiver. The residents are what keep me going.
That being said, I am also incredibly frustrated. I feel like my body should be cooperating. I also know that hoping those things...my body cooperating like a "normal" person's should and the like, is incredibly unrealistic. My body is sick, it is not strong and healthy like other people's. No matter what I do or how much I try to sugar coat it, this is my reality. It's my life. I can't continue to live in a dreamland where my body works like everyone else's. Living that way is simply going to make me look at all that I don't have, rather than looking at everything I do have. So what if I'm in pain all day every day? It's life. It's the way my life is, no matter what I do I can't change that. And why should I? Why should I want to live the life that everyone else does? That surely makes no sense at all.
The funny thing is, my illness could actually be seen as a blessing in some instances. Yep, I said it. I know, gasp if you want to, be appalled, I truly don't care. My point is, I receive graces from all that I deal with. With this disease comes a profound understanding of life. See, when your body works like it should, you don't see life for what it really is. In fact, despite my illness there is still a lot about life that I do not know. I guess you could say that I appreciate the "little things" more than the "average" person. I've seen firsthand how short life is. My best friend and my Papa were taken from me far too soon. And if I didn't have them in my life, it would be very different. Both of them have added a great deal to my life and have helped me shape an understanding about life, love, compassion, faith, and hope. There's a lot more that they have taught me. It's funny, even though they're not here on earth anymore in spirit they continue to teach me new things. Sometimes I am thinking about them and things just "click" in my head. I can't really describe it.
I talked to a Mito mom who lost her son when he was six years old. She sees it this way: people with Mito and other chronic, life-threatening illnesses have a certain spiritual awareness that most people can't fathom. It makes sense to me though. When you are faced with life altering changes due to a disease for which nothing can be done, you have to find a strength that you never knew you had. You can't just pull it out of thin air, so instead you rely on an inner strength yes but also a spirit. For me, of course, it is the Holy Spirit. It is God. If I didn't have faith, I would not be able to function. Honestly, I can't understand how people can live without it. How can they have someone they love so much die and believe that they don't go anywhere afterward? No afterlife, no eternal peace? How does THAT work?!
With my body failing me more and more as I get older, I can't help but wonder what the future holds. No one really knows what their future holds, but for me the future can be a very scary concept. I know that God will take care of me no matter what my future holds. That much I am sure of. However, I do not know what is going to happen when I can no longer take care of myself. Will I find love someday and get married and have children? I want SO much for the answer to all three questions to be yes. And it probably will be. I just need to TRUST God. I have to. God is where I get all of the strength from. I am blessed to be able to have the gifts that I do.
That all being said, I REALLY need to get to bed. I have to be up very early in the morning for staff meeting for work and then I have a very busy day ahead of me. Hoping my energy levels and pain levels stay where they need to for me to enjoy myself.
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