My grandma once told me that as a newborn, fighting for my life in an incubator, she saw a look of sheer determination on my face. I don't know if it still shows in my face today but I still feel very determined in my heart. Man, I can be stubborn. Forty three years ago I was born 10 to 12 weeks premature and weighed just over 2 and a half pounds. In short order my weight dropped to two pounds two ounces. My mom says the nurses used their thumb to massage my chest and get my heart beating again. I was so skinny she could fit her wedding ring up to my knee. (Not sure it would fit on my finger now but hey, that's another story!)
This has been a tough week physically. I don't talk about my health issues on here very much because I am determined not to let them define me. But I have to say this week was the worst in a while and I want/need to vent about it a little.
I miss being able to carry on a normal day to day life and still find my new normal hard to accept. I've been slowly going down hill for the past three years and every day I have to choose how I am going to use the spoons I have available. I am always looking ahead to what is on the calendar so that I have enough reserve energy to make it through the week. Having somewhere to go on Wednesday often means I do absolutely nothing for Monday and Tuesday and then again nothing for the day after too. Some weeks a little extra expended energy puts me way behind. Often I have no idea when I will "hit the wall" and find there is a sudden loss of energy and an "oh crap, just used up my last spoon and had no warning it was coming" episode.
I had several days this week where I had one spoon available on rising. All because Tuesday I cleaned the bathroom and livingroom and made a nice supper. Tuesday night I was quite proud of myself and my accomplisments but when I put on my pjs I saw that my legs were swelling and Wednesday morning found me with very limited spoons. It was a delayed "oh crap" moment. I went to the Mall that day (dumb choice I know) and after walking its length once I had to stay in the van for all the other stops we had to make. There just wasn't the energy to walk any further. Thursday night found me having trouble simultaneously talking and breathing. It was talk, breathe, talk, breathe most of the night. In addition to the connective tissue disorder I have there are also problems with the blood/oxygen exchange in my lungs. Rarely do I spend time with people when I am having a bad day and I was acutely aware of the talk/gasp/talk/gasp dance I was doing while spending time with friends that night.
But I am determined to have as normal a life as possible. So much so that I declared last night I was going to go buy groceries today. I can't remember the last time I bought groceries by myself - at least 4 or 5 months ago. There are days when I use up all my spoons half way through the store and it can be a panicky feeling to know I have more steps than energy left to make them. I try not to concern myself about what people are thinking when I shuffle across the store because I don't have the energy to walk and pick up my feet at the same time.
No one was impressed in my household that I was going to attempt a solo shopping excursion but me. For the most part I concede pretty quickly when an idea of mine that uses up more spoons than I have available is challenged, but I miss my independence and ability to go do what the heck I want when I want to do it. I miss falling into bed at night with that good kind of exhaustion that means I've had a productive day. So today I said, "F... it" and made the 150 km round trip and bought two weeks worth of groceries by myself. We had already planned that if need be I could leave the van running for several hours at home so that someone else could carry the groceries in when they got home instead of leaving them out there to freeze in -20C weather. But I did it all by myself!! Well, okay most of the groceries are still sitting in bags for someone else to put away but over the course of an hour I managed to carry them all inside. It probably sounds like a miniscule thing to you but for me it was an accomplishment. One I am willing to give up all my spoons for a few days to have done.
My, how life has changed. I used to have a daytimer that had very long lists on every page and my day was judged either good or bad by how many things I was able to cross off the list that day. The more check marks I had the higher my self esteem went. Heaven help the person who got in my way. It was all about the tasks and not about the relationships around me, including my kids. On days when I was going to clean the house from one end to the other you could just take care of yourself, thank you very much, and while you were at it please stay out of my way. I would fall into bed thankful for order instead of chaos with little thought to the little people in my house who had been snarled at in the process.
I was a screaming ninny kind of mother until it took too much lung power/increased heart rate to do that. In fact the last time I raised my voice I startled everyone because I just don't choose that option anymore. If nothing else I am determined that I ain't going to die of a heart attack because the world(my family) isn't co-operating with my plan (again). Oh, I still want them to but there isn't much I can do about it if they don't. Not that I ever could but I still tried an awful lot. And for the record, I still do but I don't yell to try and get my point across anymore.
Once, when I wrote about this kind of stuff before on my blog someone left a comment telling me that their mother had serious health issues and it made her very present in every relationship she had. I have mulled that over since then and made an effort to learn how to be present to others. I know I am much more positive about life in general than I was before. Now, how weird is that? It takes energy to bitch about life. Not that I never do but I do it less now. I will never win the Pollyanna of the Year award and I am not sure I want to but it is nice to see her attitude come out of my mouth from time to time.
I don't know what the point of this post is but I am just grateful that I got to do something today that I used to take for granted. Every day above ground is a good one even if the spoon count is zero.