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.

Helpless

Most of the time, I do ok. Even as I struggle to be where I want to be medically, I still know why my blood tests come out not where I want them: it’s something I ate or exercise I didn’t do. There are times when I don’t know. A few times here and there are ok. Well, not ok, but I can deal with them. However, if it goes past a couple of days in a row I start to feel helpless. Not knowing what’s causing it, and not being able to get my blood sugars down feels like I am not in control of my body. It’s not pleasant.

It’s a feeling I have had more and more lately. But not because of my condition. Because of our political situation. I knew this administration was going to be rough, but I expected Congress and the courts would do their jobs and check executive power. They are failing miserably. That means that a lot of rights and protections are being eroded, if not outright disappearing, including protections for chronic patients. (And I suspect that living in Washington amplifies that feeling.)

I think many of us feel like there is nothing we can do. I spoke with a friend this week who wanted to talk about the latest developments. He was so frustrated after just a few minutes that he couldn’t. We had to take breaks and circle back. I could sympathize.

What he was feeling about politics mirrored what I felt with my disease. I know from experience that sometimes you need to take a deep breath and step back for a while. It must have been worse for him though—he is of the generation that worked so hard to secure our rights in the first place. I can’t imagine how it feels to have come through the social movements of the 60s and 70s, only to feel like that work is being erased in a fraction of the time it took to accomplish it.

As with a chronic condition, the important part is re-establishing that slipping control. You don’t have to start with jumping back into control of everything. Start small. For my condition, that could mean walking up the last flight of stairs instead of taking the elevator all the way or testing my blood sugars a little more often.

For my friend, I suggested that volunteering for a charity or grassroots organization might help (I have two – the Chronic Disease Coalition and the Right Care Alliance.). If you are like my friend, even an hour a week is enough to feel like you’re getting your foot in the door, like you are taking control of your little corner of your little world to help make it a little less bad. And believe me, whatever organization you choose will be happy for the help.

Don’t let circumstances, political or medical, run away with you. Take back your corner of the world through action and suffocate the helplessness instead of letting it suffocate you. If you help yourself by helping someone else, you will never be sorry.

P.S. There is one more thing you can do, of course. (If you read this column, you know what I am going to say.) Vote. We are almost through primary season, although there are still a few. Midterm elections don’t usually draw much attention, but this is different. If you don’t like how politics are making you feel, vote for someone you think will make it better. That person doesn’t have to be a perfect match to your priorities – what politician is? – but I’ll bet you can find someone who gets close. Look at their voting records (or read their platforms if they’ve never held office), listen to them speak, get a feel for how connected they are to your community, and therefore to you. Choose the one who will stand for you. There is even someone who will give you a free ride to the polls.  And to think they told you there was no such thing (as a free ride).

What About the Kids?

I don’t have kids, but that doesn’t mean I don’t absolutely love the ones in my life. The first one I really “met” was born a few months after my mom died. Coming off about a year as a caregiver for a terminal patient, I was unemployed. My friends’ house was a haven away from my tiny apartment that always felt like the walls were closing in. I spent a lot of time there then. There’s nothing better for grieving a loved one than baby therapy, and this one was super cuddly, although he wouldn’t like to hear that as a rising high school senior. A few years later, he got a sister, and a couple of years after that, my brother had his first of four. For the record, that would be six kids between the ages of 2 and 17 that are really important to my life.

While my disease is mostly invisible, there is the matter of the Class III medical device that is attached to my body 24/7. It’s usually concealed by clothing, clipped to my waistband, and covered by whatever shirt I am wearing, but if you eat with someone often enough, there is no point to subtlety. They are going to see the plastic tubing and see you press the buttons, which make noise.

When they are little, kids will just take your word that it’s just called a pump. As they reach the stage that demands “why?” every two seconds, they want to know what it’s for and then how it works. Hopefully they have seen you use it enough that they are comfortable with it by then. But what do I know about age-appropriate explanations? My parents always answered our questions, and I am not sure there was much moderation. I want to tell them the truth, but I don’t want to freak them out and make them worry.

The first time it happened, it caught me totally off guard. I was speechless as my mind raced as I tried to find the right words – a rare occurrence at best. Finally, I looked at the toys scattered on the floor around me and I told the toddler next to me that, similar to how toys sometimes break, my body was broken, and the insulin pump I wore helped it work properly.

As they grew older they asked more about the details, which allowed me to elaborate about the chemical that helped me make food into energy. Around that time, the first two kids’ next door neighbor was diagnosed with Type 1 diabetes, and I hope (and suspect) that their early exposure to my condition gave them an understanding that took away the stigma I felt growing up.

That’s the age where they will accept your condition on the same level as your eye color. We patients talk about lessening the stigma of chronic conditions and mental illness, which is so important to the treatment of us as people.  It’s hard to let go of the impressions we formed when the adults who raised us could only discuss the plight of a friend or family member in whispers, and a stigma is born, rather like the Harry Potter novels referring to villain Voldemort as he who shall not be named. It is only by acknowledgement of reality, no matter how bad, that we can remove the stigma and begin our plan of attack.

Diagnoses of many chronic illnesses are increasing, and telling ourselves that kids don’t see it just because we want to protect them to won’t make it so. Fibromyalgia was not on the radar at all when I was a kid, and the forecast is that one in three kids born today will be diagnosed with diabetes. They are going to at least know someone with a chronic condition, and talking about it before then will help them see that friend or colleague or themselves as someone not to shy away from. They could be the first ones to see us for who we are and not what we have.

The Justification of Sick Days

I made a mistake today. I have a cold, and in an effort not to seem anything but “normal”, I went back to work as soon as my fever ebbed. I’d had it for several days already, so I wasn’t contagious anymore. And normal people never take much time off for a head cold, do they?

Problem is, my condition complicates things. A cold that lays a healthy person low for three days can take me out for three weeks. If my head still feels like it’s about to roll off my neck, my throat still hurts, and my blood sugars are still out of whack, it’s not the time to push myself back to work.

Feeling this way is not just for (contagious) sick days. A few weeks ago, I found myself dealing with what turned out to be an expired vial of insulin. It happens, but sometimes it takes a while to figure out since it’s so rare. While I struggled with high blood sugars that just would not come down, I wanted to go home from work early, but I didn’t because it felt like failure.

Why do I feel this way?

This is the first time I have taken unexpected sick leave in the eight months I’ve been on this project, and as far as I know, neither client nor boss has a problem with me teleworking. When I try to unravel it, it sounds like the patient’s version of something called “imposter syndrome.” It’s that feeling you get when you doubt your abilities and start to feel like a fraud for even trying to do whatever you are attempting. For anything else, my “fake it ‘til you make it” instincts would kick in. Instead, I start to compare myself to everyone else in the office, and while plenty telework more than I do, my internal monologue starts to whisper that their reasons are more legitimate than mine, and that I don’t deserve more time at home unless it’s totally unavoidable, like a doctor’s appointment. Apparently, my unforgiving internal monologue does not think that diabetes factors that exacerbate illness are legitimate.

The best and the worst thing about having an invisible condition is that you can play at being “normal”, or at least healthy. Every time I hear “But you don’t look sick” reinforces the idea that I can “pass” for healthy. It’s a great feeling when someone sees me as nothing more or less than how I wish to be seen. It also makes it harder and harder to make appropriate accommodations for myself when I need to, which can be dangerous.

One would think I would know all of this by now, and one would be right. I know it in my head. It’s my emotions that can’t keep up. Sometimes I go so long feeling how what I imagine a healthy person feels, I will deceive myself into thinking my body is just like everybody else’s so I can hold onto that. And if I can’t let go of my own illusion and I am just like everybody else, then I don’t deserve the accommodations other chronic patients get. When I start to doubt what I need to take care of myself is justified, I become very harsh and self-critical. That’s not productive.

It might be better to consider what I would say to someone else in my situation. Of course they should take the time they need. And if they should, so should I.