In The Eye of the Chronic Beholder

I hate my body. Well, that’s not fair. It’s more of a love-hate thing. I love that it’s resilient enough that I am still alive – truly amazing! – but I hate everything else. There is the exhaustion that drags at me any time my blood sugar that isn’t within a fairly narrow range. There is the nausea from damaged nerves in my stomach. There is the occasional, but crippling pain that shoots into the base of my skull from my shoulder, a leftover from my paralysis. I could go on, but this is not the time for what my family calls the “organ recital.”

Last week, I started seeing some articles about “Snapchat dysmorphia”, a condition where people are starting to get plastic surgery so they can look like what their Snapchat filters make them. This shouldn’t be a shock in our social media society, but it is one of the saddest things I have ever heard. It’s just a leap (bigger than a step) too far.

Most everybody has something about their bodies they want to fix, but chronic conditions make it worse. When you are seriously ill and not treating your condition helps you suddenly fit society’s physical ideal, or at least your perception of it, it is harder to take action to bring your condition under control. (How many of us are not so upset to lose a couple of pounds if we have to suffer through the flu?) When you take medication that makes you put on weight or causes hair loss or affects your skin, it is tempting to skip it, even at the risk of your condition’s stability.

I’m no different.

When I lose control of my diabetes, getting back in control means automatic weight gain. Going from not absorbing everything you’re eating to absorbing every crumb will do that. If you want a healthy and stable diabetes monster, you have to just accept it. Exercise can help mitigate the weight gain, but not all the time. In the simplest terms, if I am unhealthy and I want to be healthy, it means I am going to get a little bit fatter. And if it’s an improvement I can’t maintain, I will get a little bit fatter every time I get my diabetes under control.

The most dramatic example of this was my initial diagnosis, when I gained 60 pounds in six months because I had basically been in a state of starvation, and the less than stellar medical providers available to me wouldn’t work with me to appropriately adjust my diet plan. (I hadn’t developed yet into the advocate that would have ignored them and done what felt right to me.) This is how I developed a diabetes-specific eating disorder.

At least I was lucky on the social side. I never lived in a house where there was an emphasis on fashion or beauty. My mom was beautiful, but she was the kind of woman who, on the rare days she used makeup, would use her lipstick as blush. She had Crohn’s disease and could never quite get off the Cortisone that made her gain weight. I suspect it bothered her, but I can’t remember hearing much about it. I also can’t remember ever seeing a Cosmo or Vogue in our house, ever. There was zero pressure from my family to conform to society’s dictates. Even so, I thought I was fat even when my BMI said I was not even in the overweight category.

Luckily, my body image ideal has evolved since I was a teenager. I don’t want to be thin like I was then. I want to be strong, like I was before my unfortunate work situation a couple of years ago knocked me off my regimen. When I was exercising regularly and my progress was tangible. When I could run intervals for the length of an entire TV show, it gave me confidence and a sense of purpose that leaked into other facets of my life.

I know it’s not easy to change your perception when we are surrounded by the shallowness that social media society causes. It’s so tempting to compare ourselves to the people we see in magazines or on Facebook, but those are only snippets of their ideal, not their whole lives.

So try not to do that. We’re outside the norm already. Just going to work every day – or every other day – makes us stronger than the average bear. And we understand our bodies in ways healthy people never will. If we try, we can recreate our physical ideals based on where we want our conditions to be (the parts we can control). Forget social media. Why not let that be our new standard of good and beautiful?

Silent and Unsung

Let’s talk about the caregivers. Not all chronic and autoimmune conditions require a caregiver, but a lot do, especially at the beginning. No matter what the diagnosis, it is a big, traumatic adjustment, and it’s always better with someone to lean on during the days when you just don’t want to deal.

My entire family served as caregivers when I was little. I couldn’t walk because of the effects of b strep meningitis. They had to get me stuff, feed me because one of my arms didn’t work, and take me where all six-year-olds need to go – to school, outside, to the doctor. Even my 2-year-old-brother gave to the effort in that he was (unintentionally) marginalized when he should have been the center of attention.

When I was a teenager, I didn’t want help. I pushed everyone away until I couldn’t anymore. That didn’t mean my family wasn’t caregiving.

Sadly, I had the chance to give back a decade later when my mom was diagnosed with pancreatic cancer, which, thus far, is always a death sentence. I was lucky – I was between college and beginning a career, so I was able to focus on her completely. Both she and my dad told me to get a job, but if they’d really meant it, they would have pushed harder. For 11 months, I didn’t do much but spend time with her, take her to doctors’ appointments, and care for her as she deteriorated. It never occurred to me to bring in outside help, even as she got to the point where she struggled to bathe herself and use the restroom on her own.

I couldn’t let anyone else see her like that. I think we both felt that she had done for me, so it was ok, but anyone else would have dented her dignity too much. If she hadn’t been caretaker for my diseases, I’m not sure she would have let me. I think a lot of caretakers think they owe it to their loved ones to take care of them, and expense notwithstanding, would feel guilty if they didn’t do it themselves. I felt guilty for leaving the hospice for a couple of hours on my birthday.

Eleven months is not a long tenure for a caretaker. It didn’t tax my time since I didn’t have a job. But watching someone I loved so much dying was unbearably stressful and emotionally taxing. Don’t get me wrong. I don’t regret a minute of it, even the two weeks I spent on a cot in hospice with her (over my 24th birthday) and telling the truth when she asked if she was dying. (That is probably the hardest thing I have ever done, and I got yelled at for it, but how could I have done anything else?)

By the time we buried her, I could barely move. I called one of my closest friends and ran away to Texas. I didn’t need much attention from her. I just needed to be away. Two weeks passed quickly, and I wasn’t ready to go back, so I doubled my stay. Even after that, I was still tired enough to fall asleep at a Smashing Pumpkins concert.

When you care for a loved one, you don’t just go through the motions. You put everything you are into it, sometimes more than you can afford to. If I felt completely worn out after less than a year, I can’t imagine what happens to those who are long-term caregivers. Depression, anger, and guilt are all common. But there is support now. Caregivers shouldn’t feel bad about taking time for themselves, to regroup and recharge. If you do, keep in mind that everyone, including your loved one, will benefit when you feel better. You won’t be able to take care of anyone if you don’t take care of yourself.

Drink Up

Ah, water. The most constructive and destructive force in nature. Too much and it will destroy your life (hurricanes, sinkholes, floods). Too little and it will, well, destroy your life (drought, wild fires). It’s all about balance. The human body just can’t live without it.

Dehydration is a danger to everyone in the summer, but especially for those with chronic conditions. It can cause, worsen, or be a symptom of heart disease, hypoalbuminemia (too much albumin in the blood), hyper-/hypothyroidism, cancers requiring a certain course of chemo (cisplatin), and my own lovely monsters, diabetes and kidney disease. If I’m outside too long, I’m dehydrated. If I travel on a plane, I’m dehydrated. If I get sick to my stomach, I’m dehydrated. If my blood sugar is high, I am dehydrated. Around 66% of adult bodies are water, and if we don’t replenish what we use, it can make our conditions worse.

Every year, there is a host of articles warning about the dangers of dehydration, especially in the summer. But what happens if you actually get dehydrated?

Dehydration is a sneaky little devil. Even a little imbalance can cause you to feel spacey and clumsy. Inside your body, your blood thickens, which makes it slow and sluggish, so your heart rate rises. Your body starts conserving water for the most necessary tasks like blood flow and cell function. By the time you feel thirsty, you are already dehydrated.

And it’s not just a matter of being thirsty. Cottonmouth, unexplained exhaustion, and not needing to pee for an unusually long time are all pretty well-known symptoms. But in my experience, dehydration can also cause headaches/migraines, muscle cramps, and a weird, extended numbness in your extremities, like your hand fell asleep and won’t wake up when you shake it. That time I didn’t hydrate properly for exercise, I had the worst cramps I have ever felt. I felt it coming, and just wanted to finish the last few minutes. By the time I got off the treadmill and grabbed water, I couldn’t even sit up straight. I felt nauseated as I slowly sipped water. It didn’t let up completely until over 20 minutes had passed, and that was in an indoor, controlled environment. I have never made that mistake again.

How do you treat it?

Sometimes it’s not as simple as drinking a glass of water.

Water is great, but it may not be the best or fastest treatment, at least by itself. There is a reason “smart” drinks and sports drinks are popular with athletes. They have electrolytes. Electrolytes are a collection of salts -- calcium, magnesium, potassium, and plain old table salt – that help regulate water flow in and out of your cells. A banana can help (but not too much – too much potassium can mess with your heart) and if you don’t have one of those enhanced options close when you need it, you can add salt and/or lemon juice to tap water. There is also Pedialyte, which comes in popsicles!

While you are treating dehydration, you also might want to avoid caffeine, alcohol, sugary drinks (and foods), and anything overly salty, like soy sauce, as they will just work against you.

In the most extreme cases – you can’t tear yourself away from the bathroom due to one end or the other – it’s time to visit the emergency room or urgent care center. They can hook you up, literally. A few hours on IV saline (diabetics out there, make sure it’s the kind without glucose), can work miracles.

Even when you start feeling better with treatment, don’t be fooled. When I asked my doctor about it last time I had this issue, he said that it takes a day or two to recover completely. Don’t be surprised if you are completely wiped out for one or two days.

Of course, the best treatment is no treatment at all. It’s prevention, like all those articles tell you. Keep a bottle of water with you if you’re going to be outside (especially in the summer heat) or away from somewhere you can easily get a drink. Throw a few bottles in your car or your bag. Your body will thank you for it.