She’s a woman, we’re about the same age, and we’re both survivors. The most significant thing I have in common with Theresa May, though? It’s actually one thing we both would rather do without: the new British Prime Minister and I have Type 1 diabetes.
Theresa May, the UK’s new Prime Minister.
Millions of people have diabetes. Only a small fraction of us have Type 1, though. That’s the one that is also known as juvenile diabetes. I was diagnosed with Type 1 at age seven. Prime Minister May was diagnosed in 2013. This BBC story about her last Tuesday demonstrates just how complicated it can be to fully understand the chronic disease:
She has rarely opened up about her private life although she revealed in 2013 that she had been diagnosed with Type 1 diabetes and would require insulin injections twice a day for the rest of her life — something she says she had come to terms with and which would not affect her career.
I looked up an interview where she mentioned her diagnosis. “I’m on an insulin regime so I’m injecting insulin four times a day,” she said (the emphasis on the number four is mine). In the interview She also explained that she takes additional injections when she eats extra carbs or her blood sugar tests run high.
Okay, I hear you. It’s just a number. What’s the difference between two, and say, four? Or more? Trust me, it’s a tremendous difference when you’re the one taking all those injections. Not to mention the blood test you need to take throughout the day to determine if you got the amount of insulin right the last time you took a shot. Or whether you still need to take more
Type 1 diabetes — the kind Theresa and I have — comprises only 5 percent to 10 percent of diabetes cases. Type I diabetics have to inject insulin –pills won’t work. In Type 1, the immune system destroys the cells in the pancreas that make insulin. Researchers have not yet been able to figure out why that happens, but they do know it has nothing to do with the person’s behavior.
Ninety to ninety-five per cent of the people who have diabetes have Type II, and in those cases doctors often prescribe exercise and weight reduction. A number of people I know have been “cured” of Type 2 by exercising and losing weight. Type 1 is a whole different story. Prime Minister May and I could run, jump, swim, skip rope, lift weights and do cartwheels from sun-up to sundown (okay, truth is, I could never do a cartwheel, even when I was a kid, but you get the picture) and we could shrink down to a size 3 dress, but we’d still need to inject insulin. That’s because, no matter how much we weigh, those of us with Type 1 produce no insulin. None. Nada.
And so, Theresa and I — along with millions around the world who have juvenile diabetes — take insulin every time we eat. We test our blood several times a day to make sure glucose levels are within range. We balance meals, snacks, exercise and medication to prevent diabetes complications, which can include kidney failure, amputations, and … blindness.
Fast-acting insulins, insulin pumps and home blood monitors were not available 50 years ago when I was diagnosed. I took shots, avoided sugar, and tested my urine at home from time to time to get a guess at what my sugar levels were. I was advised not to have children, warned of the likelihood of complications and told I likely wouldn’t live past age thirty.
No surprise that throughout my childhood I saw my juvenile diabetes as a weakness. In early adulthood, though, I decided to fight back. I studied the disease, bought one of those new-fangled home glucose monitoring machines, and with my husband Mike’s help and support we started testing my blood regularly. I became more vigilant about exercise, walking everywhere and swimming every other day and closely monitoring how much that exercise brought my blood sugars down. I figured out how much my favorite foods brought my blood sugars up, too, and now I inject that new fast-acting insulin six, seven sometimes eight times a day to balance the meals and snacks I like to eat.
A new blood monitor at home talks — it calls my numbers out loud, so Mike doesn’t have to be around every time I want to check my sugar levels. Controlling my blood sugar keeps my weight at a steady level and gives me good overall health. Best of all: It makes me feel good.
Today’s appointment of Theresa May as UK’s new Prime Minister makes me feel good, too. Her appointment gives me even more reason to think that our Type I diabetes is not a weakness after all. It’s a strength. Living well with the disease teaches us perseverance, self-control, discipline and resourcefulness. Coordinating meals with insulin injections forces us to think ahead and make good decisions. Here in America we’ll be making a decision soon about a new leader. I hope we choose one with characteristics like those of my fellow Type I diabetic. Prime Minister May shows good judgment and is careful about her personal management. Maybe it’s just me, but it sure seems having control of yourself is a good place to start when it comes to taking control of a country.
Beth, I will forward your posting to my Type I son, who has now been diabetic for 34 years. It always helps to pint out the differences.
Sorry I won’t be there at Memoir I this week to thank you for his in person.
Thanks for forwarding it to him, Mary. We’ll miss you in clss tomorrow, but look forward to having you back with us next week.
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Turned a light on for me re Type 1. Thank you.
You are welcome. It truly is a complicated disease to understand.
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You are a mensch! This is informative and inspiring and just good to read.
Wow! High praise coming from an accomplished writer –and teacher –like you. Plus you have a sensational first name. Thank you, Beth.
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An important, informative and entertaining blog, Beth. I learned a lot from it. Thank you.
Thank *you* for saying so, my friend.
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Beth, You absolutely nailed it with that final sentence! I only wish that everyone who runs for office and who votes would remember that! Terry
Thanks –I figure that in a democracy, it’s up to all of us to keep reminding each other.
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Dear Beth,
I have Adult onset Diabetes, type 2. I had a kidney transplant January 2, 2007. My wife gave me a kidney. Now when she gets angry at me, she threatens to take it back (smile).
Last year she got a new knee. She expected me to give her a knee in return (smile).
Before the transplant, I was on Dialysis for 9-months. Believe me, that was no fun at all. I hope you continue to manage your diabetes to protect your kidneys.
My first cousin once removed was diagnosed with type 1 at the age of two. As she grew up, she became a smoker. She could have a transplant of kidneys and another organ but would not quit smoking. She went through a lot of near death situations. Finally she had a stroke at about the age of 38 or 39. After the stroke, she did not remember ever smoking. So she had the transplant. Now, she is no longer diabetic. But of course she is somewhat mentally impaired from the stroke.
As I said, she had not only a kidney transplant, but another organ.
Thus, my question is, have you considered such an operation?
Best, –Bob Ringwald
Good question, Bob, and I’m happy to say my doctors have given me a very good answer: they say my health is too good right now to consider a transplant. My kidneys are working so far. Knock wood. My brother-in law was diagnosed with Type II diabetes as an adult, he went through kidney dialysis for over a year and was finally fortunate enough to receive a donated kidney. One of our cousins with Type II received a donated kidney from his wife (but I don’t think she ever threatens to take it back!) All to say I do have some experience with what you went through.
“But how about a pancreas transplant?” you ask. Well, a pancreas transplant might offer a “cure” for type 1 diabetes, but many physicians are reluctant to transplant a pancreas alone for someone with Type I diabetes if the patient doesn’t have kidney damage already. The reason? Side effects of the immunosuppressant drugs required after transplantation are more detrimental than the complications of diabetes.
When someone has severe kidney damage due to type 1 diabetes and is experiencing renal failure, doctors reason they may as well combine a pancreas transplant with the kidney transplant. That way you end up with a healthy kidney, plus a pancreas that won’t damage it anymore.
When I was training with my dog Harper at the Seeing Eye, A fellow student there who’d been diagnosed with Type I diabetes as a kid shared stories of receiving a kidney and pancreas transplant. “No more diabetes or kidney problems!” she’d say. At the same time, she readily acknowledged that she’d exchanged one set of challenges with another. I’d hear her alarm go off twice a day to remind her to take her anti-rejection medication, and she still has regular doctor visits and blood tests and a compromised immune system to deal with.
So while I envied the way she could eat desserts at dinner without worrying how much extra insulin to inject to “cover” the extra carbs, or how she’d scurry out to the Seeing Eye shuttle bus without pricking her finger to check her blood sugar level first, or hos she never ever had to pat her pockets to confirm she had a glucose tablet along, you know, in case of a low blood sugar en route, I am hopeful my kidneys stay healthy and I never need a transplant.
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1.Truly one of the awful so-called “manageable” diseases.
2.It is very unusual – rare, in fact – for a Type I diabetic to be diagnosed in her fifties.
3. Henry has a slide that he uses in talks showing the mortality rate for diabetics (both types) who are smokers. Frightening.
Yes, yes, and yes. As for that third one, I have a number of bad habits, but Danken Got smoking isn’t one of them.
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Great story, and when I saw the tease I was sure it was going to involve the last name of May! Well done!
That would be a guest post for my sister Cheryl — just like the new Prime Minister, Cheryl married a man whose last name is may. I’m sure they are related….!
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Good one. And you’re final thought, though subtle, is on target, effective and agreeable.
Thanks,Doug. Maybe you’ll have to change the lyrics to the Beth, Betha, Best song you wrote for me. Right now it describes me as “Politically misguided….?”
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Hello Beth,
I remember so well your visit to Freeport, IL, and how beautifully you managed. I knew you needed to take insulin injections, but somehow you fit these into the busy schedule with no apparent difficulty.
Of course, for those of us who are sighted, observing your ability to function so well is quite impressive, and we tend to forget your being diabetic. So your post is very informative and gives healthy readers some insight into the day-to-day effort that chronic illnesses and conditions require of patients. Your response to the question about surgeries and transplants also offers readers a perspective that they may not have considered.
I find many people assume that a particular person is doing well all the time when actually that might not be the case. Sometimes, I feel and act as though I’m fine but a few hours later, I have trouble walking. I’m glad you pointed out in your reply to Bob that surgery for certain conditions might make things worse or simply trade one problem for another. I’ve had several neurologists suggest I have DBS (Deep Brain Stimulation) surgery for Parkinson’s without even noticing that I’ve been on warfarin for 35 years and Plavix for three and often have problems keeping my blood at the correct level. Friends and acquaintances think I’m doing really well, and I AM, but this requires a good deal of effort. Caregivers for PD patients have remarked to me, “I wish my spouse would exercise the way you do. He/She just won’t do it.” The implication seems to be that the patient doesn’t care about doing well or is just plain lazy. I try to explain that when my medication is working, I’m able to walk, talk, and exercise. But increasingly, as the years go by and the disease progresses, more medication is required (causing their own problems). Eventually, the medications work for only short periods of the day or not at all. Without dopamine, nothing seems worth the effort, so I understand why the caregivers become frustrated but also why their loved ones are not doing jumping jacks. I admire anyone who has a chronic condition yet manages to participate in the world beyond blood tests, special diets, etc..
Thanks for pointing out British Prime Minister May’s health issues. And I totally agree with your suggestions that we vote for someone who has her attributes.
Keep taking care of yourself – with Mike and Whitney’s help!
Sheila
Oh, Sheila, thank you so, so, so much for this well-thought-out comment. I, too, understand why caregivers become frustrated when people with chronic illnesses don’t exercise , take care of themselves but also why their loved ones are, as you so eloquently put it, “not doing jumping jacks”.
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Great post. I love the way you connect the personal with the big picture here. Wishing the best for you, May, Britain, and the U.S.!
Thanks for the comment on my writing –high praise coming from a fine writer like you, Linda. And yes, Godspeed to anyone leading a country right now — we (and they) need all the help we can get.
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Good Post, Beth. The way you live your life does tell something about who you are as a person. Monna
And if that’s true, you are a very thoughtful person. You sure lead your life in a thoughtful way, Monna.
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Beth. My dead ex-husband, Jim Kelly had juvenile diabetes. You know a little bit about him from my 500-worders. I’ll have to write more.
I’m having way too much trouble writing this weeks assignment. I’m only 10 days out from my surgery. It’s possibly the painkillers.
I love this piece. I’m not one of those who hand-wrings over Brexit. And your piece gives me a personal reason to stay connected to this history in the making.
Whoa. That comes to me as a surprise. Both the juvenile diabetes, and the news of his death. I had no idea he’d died. But yes, I do feel as though I know him from your 500-worders. Thank you for writing them, Regan.
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