II have been feeling frustrated lately, and I think some of it comes from my friends not understanding what’s going on with me... So I am going to tell you a little bit about that... about what is actually going on with me.
I am disabled. I have celiac disease, which I inherited from my mother. Born in 1920, she was one of the first diagnosed cases of what they used to call “sprue.” Her doctors hadn't realized that gluten was the problem, but they did realize that these sick babies would start to thrive if they were put on a diet consisting of nothing but bananas and oatmeal for the first three years of their lives. So that's what my mother ate.
She did survive, but, sadly, she grew up believing that sprue was a childhood disease that she had outgrown. No one outgrows celiac... at least, not to my knowledge. Because of this misinformation, my mother ate wheat all her life and, consequently, suffered from a huge number of mental and physical disorders. It never occurred to her to have her children tested. As infants, we were not noticeably sick. We grew up eating wheat.
I was forty before I realized that I had inherited celiac from her. It took a while for me to connect the dots back to my mother’s “sprue.” By the time I realized what I had, I was suffering from a wide range of conditions related to poor absorption of nutrients from a compromised gut. I was running serious deficiencies in the B vitamins, in zinc, in magnesium… and I was severely anemic. And I wasn't metabolizing fats very well. Every year, I was becoming more and more malnourished.
I am disabled. I have celiac disease, which I inherited from my mother. Born in 1920, she was one of the first diagnosed cases of what they used to call “sprue.” Her doctors hadn't realized that gluten was the problem, but they did realize that these sick babies would start to thrive if they were put on a diet consisting of nothing but bananas and oatmeal for the first three years of their lives. So that's what my mother ate.
She did survive, but, sadly, she grew up believing that sprue was a childhood disease that she had outgrown. No one outgrows celiac... at least, not to my knowledge. Because of this misinformation, my mother ate wheat all her life and, consequently, suffered from a huge number of mental and physical disorders. It never occurred to her to have her children tested. As infants, we were not noticeably sick. We grew up eating wheat.
I was forty before I realized that I had inherited celiac from her. It took a while for me to connect the dots back to my mother’s “sprue.” By the time I realized what I had, I was suffering from a wide range of conditions related to poor absorption of nutrients from a compromised gut. I was running serious deficiencies in the B vitamins, in zinc, in magnesium… and I was severely anemic. And I wasn't metabolizing fats very well. Every year, I was becoming more and more malnourished.
My condition was compounded by Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS). I was stricken with ME/CFS in the fall of 1987. It came on like the worst case of flu in my life… except I never recovered. I was desperately sick for about seven years: encephalitis, petit mal seizures, strange rashes, neurofibromyalgia, debilitating migraines, sleep disorders, extreme irritability, vision problems, multiple chemical sensitivities (allergies to everything), cognitive disorders, and fatigue. Fatigue so serious I could not clean the litter box and get the mail from the mailbox on the same day. And an inability to bounce back from even mild physical exertion (post-exertional malaise).
I am better now, but here’s the thing: I’m not normal. Not even close. Most people aren’t around me consistently enough to realize the extent of my disability, but it’s like this: I start every day with a certain number of energy chips… let’s say 60 chips. That’s all I’m going to get for the day. And if I try to do things that require more than my allotment of energy chips, I can become incapacitated for more than a week. It's like I go to energy debtor's prison. It’s really important for me not to spend beyond my limit. 60 chips. No credit cards. No checks. Strictly energy cash, pay-as-you-go.
I am better now, but here’s the thing: I’m not normal. Not even close. Most people aren’t around me consistently enough to realize the extent of my disability, but it’s like this: I start every day with a certain number of energy chips… let’s say 60 chips. That’s all I’m going to get for the day. And if I try to do things that require more than my allotment of energy chips, I can become incapacitated for more than a week. It's like I go to energy debtor's prison. It’s really important for me not to spend beyond my limit. 60 chips. No credit cards. No checks. Strictly energy cash, pay-as-you-go.
So most normal folks start their day with, say, 300 energy chips. On an average day, an average person only needs, say, about 200. Most people never even have to think about it. They do a bunch of things all day until it’s time to go to bed. They end their day with a pile of unused energy chips. They have an abundance of energy for whatever they want to do.
But I have to budget. I have to scrimp. I have to rob Peter to pay Paul. There’s a whole lot of calculation and negotiation that goes on in my daily activity log. When I get up in the morning, I look at what I absolutely have to do that day. That gets the first allocation of energy chips. Then I look at the things that have to be done sometime. That’s the next round. If I have any chips left, I can budget for something fun. I am mostly retired, which is a great relief, but just routine cleaning and cooking and keeping up with things like oil changes or dental visits takes much of my energy. I also have to eat a very specialized diet that precludes gluten, dairy, sugar, and prepared foods. I end up needing to cook a lot. It gets exhausting, but if I am not careful, I will wake up in the morning with only 50 chips instead of 60.
But I have to budget. I have to scrimp. I have to rob Peter to pay Paul. There’s a whole lot of calculation and negotiation that goes on in my daily activity log. When I get up in the morning, I look at what I absolutely have to do that day. That gets the first allocation of energy chips. Then I look at the things that have to be done sometime. That’s the next round. If I have any chips left, I can budget for something fun. I am mostly retired, which is a great relief, but just routine cleaning and cooking and keeping up with things like oil changes or dental visits takes much of my energy. I also have to eat a very specialized diet that precludes gluten, dairy, sugar, and prepared foods. I end up needing to cook a lot. It gets exhausting, but if I am not careful, I will wake up in the morning with only 50 chips instead of 60.
Anything emotionally strenuous or physically demanding will run through all my chips and land me in bed. I can’t do aerobic exercise. I can’t deal with dysfunctional dynamics. Drama is a luxury I can’t afford. And travel, because of all the unknowns, crowds, toxins, and changes in plans, is incredibly challenging for me.
If you ask me at the last minute to do something, I am very likely going to have to say no. If you ask me at 2 PM about going to a party that night, I probably won’t have saved up the energy chips for it. I was planning to be done with my day by 6 or 7, so most of my chips have already been used up. If you had asked me two days earlier about the party, I could have budgeted, but now it’s too late.
Also, as an introvert, I am drained when I am around people, even close friends. Like other introverts, I recharge my batteries by being alone. (Extroverts are the opposite.) I have to budget the plans I make to be with people. It can use up all my chips just to host a visitor for a day, or even a half-day. If you come to visit me, come prepared to entertain yourself without me for much of the time. I need most of my time for myself. Introversion + celiac + ME/CFS = the main reason why I have been single for most of the last 30 years. I just don’t have the energy.
If you ask me at the last minute to do something, I am very likely going to have to say no. If you ask me at 2 PM about going to a party that night, I probably won’t have saved up the energy chips for it. I was planning to be done with my day by 6 or 7, so most of my chips have already been used up. If you had asked me two days earlier about the party, I could have budgeted, but now it’s too late.
Also, as an introvert, I am drained when I am around people, even close friends. Like other introverts, I recharge my batteries by being alone. (Extroverts are the opposite.) I have to budget the plans I make to be with people. It can use up all my chips just to host a visitor for a day, or even a half-day. If you come to visit me, come prepared to entertain yourself without me for much of the time. I need most of my time for myself. Introversion + celiac + ME/CFS = the main reason why I have been single for most of the last 30 years. I just don’t have the energy.
If I am visiting you, and you have planned a whole bunch of activities, I will probably have to say no to most of them. I can budget for, possibly, one a day.
I love the saying, “If you see your glass as half-empty, pour it into a smaller glass and stop bitching.” That is exactly what I have done.
I have moved to a little village where I am two blocks from the library, the post office, the grocery store, the hardware store, and the town hall. I live on an island where there is a national park. I can access breathtaking day hikes in just fifteen minutes. I rarely leave the island… and my cup runneth over with beauty and gratitude.
I write for a limited amount of time every day. I’m often done with my day by 6 or 7 at night. I keep things as simple and easy as I can… and I still feel vulnerable. A flat tire or an emotional tiff can blow the energy budget for the day, and a day of energy debt can cost me an entire week.
I love the saying, “If you see your glass as half-empty, pour it into a smaller glass and stop bitching.” That is exactly what I have done.
I have moved to a little village where I am two blocks from the library, the post office, the grocery store, the hardware store, and the town hall. I live on an island where there is a national park. I can access breathtaking day hikes in just fifteen minutes. I rarely leave the island… and my cup runneth over with beauty and gratitude.
I write for a limited amount of time every day. I’m often done with my day by 6 or 7 at night. I keep things as simple and easy as I can… and I still feel vulnerable. A flat tire or an emotional tiff can blow the energy budget for the day, and a day of energy debt can cost me an entire week.
Am I controlling? I experience that as an unfair question. I have to live within my energy means. The penalties for overdrawing the account are very severe. How I live isn’t micromanaging to me. It’s prudent self-care. And it's not optional.
So, if you are my friend, that’s how I tick. I am disabled all the time. I’m on the energy clock all the time. If you know this about me, and you have empathy, that is a bonus for me. It's fewer energy chips I have to expend when I am around you. And sometimes, believe it or not, I actually get an extra chip or two from your concern and consideration. And that is something exquisitely rare and precious to me.
So, there it is. Thanks for reading.
So, if you are my friend, that’s how I tick. I am disabled all the time. I’m on the energy clock all the time. If you know this about me, and you have empathy, that is a bonus for me. It's fewer energy chips I have to expend when I am around you. And sometimes, believe it or not, I actually get an extra chip or two from your concern and consideration. And that is something exquisitely rare and precious to me.
So, there it is. Thanks for reading.
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