Living with chronic illness is hard. If you’re reading this post, I don’t have to tell you that. I don’t know what the hardest part of it is- the loss of a sense of self, the inability to do the things you love, the pain, the isolation, and the lack of independence are all pretty hard to deal with. But today I wanted to talk about something specific. The lack of understanding that we as a culture have for people with chronic illnesses makes it very hard to navigate the social world. With one paradox in particular.

You know the phrase damned if you do, damned if you don’t? When you have a chronic illness, this phenomenon is unavoidable. Too much exercise can land you in a world of pain, but not enough can lead to deconditioning. Too much medication can cause dependence or wreak havoc on your body, but too little is unbearable to live with. And the one I’m talking about today: if you act sick, you must be exaggerating, but if you act happy, you must be feeling good!

When you go to your doctor and act as miserable as you feel, they see you as a hypochondriac. When you go to the doctor with a smile on your face, they don’t take your symptoms as seriously.

When you hang out with friends with a glazed look in your face and need to be laying down all the time, you come off as a high maintenance attention seeker. When you hang out with friends acting happily and being perky, you come off as someone who feels great.

I get this all the time from people who I care about dearly. Seeing family on a good day, someone will remark, “oh, I’m glad you’re feeling better!”. It’s a perfectly nice thing to say- there’s just one problem. The underlying assumption in that statement is that you actually ARE feeling better. “Better” is a pretty tricky term for people with chronic illnesses.

But like I said, living with chronic illness is hard, and I almost never feel “good.” Better for me might mean I don’t feel like I’m going to pass out every minute I’m standing and that my head pain is at a bearable level. I still need to lie down and rest. I’m still taking pain medications on a regular basis. I’m coping- not better. At a semi-functional level. Chronic means ongoing- which means I may never get “better.”

But that doesn’t mean I can’t live my life. If I’m feeling good enough to be out and about, I’m going to smile through it. I’m a happy person. I can feel happy emotionally while my body is screaming at me to lay down in a dark silent room.

But in the days before I honed my ability to smile through the pain, there was a lot of talk. People basically questioned whether I was actually sick, or just trying to get attention and miss school. I looked a lot more like I felt- hence I must have been exaggerating or faking. Doctors suspected I was just some hysterical teenager.

I lost friends because I didn’t know how to navigate the social world. When I felt good enough to be out and about, I looked fairly normal. But if I pushed myself to be out when I didn’t feel good- people didn’t want to be around me. And I was judged for looking good some of the time and sick some of the time. I didn’t know how to advocate for myself.

Now I don’t expect people to read my mind. When someone remarks that I look great and they’re glad I’m feeling better, sometimes I just roll with it (after all, I’m using enough energy just to be there, let alone explain the complications of chronic illness to every person I meet). But if they’re someone who I think will be receptive and I’m feeling up to it, I will explain that I’m not actually better, I’m just trying really hard. They always get this surprised look on their face.

I never know if I should give in to my impulses to rub my head and put my feet up, or ignore it and keep a smile on my face. I do varying levels of both, with varying responses. I can’t speak for everyone with a chronic illness, but I pretty much never want attention drawn to my illness, because it is uncomfortable ground to cover socially.

How are people with chronic illnesses supposed to act? I haven’t figured it out yet.

We need to change the way we perceive chronic illness. Chronic means ongoing. Chronic means there might never be a cure. Chronic can mean lifelong. It means that some days you’ll look better than others.

So please stop assuming that people are either exaggerating or must be better. It isn’t an either or situation. There’s no black and white- everything is gray.

When you ask me how I’m feeling- don’t give me a look when I tell you the truth. Don’t judge me for missing an event last week if I’m able to show up today. Don’t hold me to my appearance. Don’t get upset when I do show up in sweatpants and need to sit down the whole time. Don’t get upset when I do show up in a dress and am happily interacting with people. Keep an open mind.

The thing I’ve learned most since having a chronic illness is to have empathy for everyone. You have no idea what they are going through. So that’s the principle I’m going to advocate for here. If you give people the benefit of the doubt and assume everyone has good intentions, the world is a much nicer place to live in. Try to think of everyone as a human being that has a complex life with lots of struggles. Because we all do. We all are complex.

I’m not exaggerating and I’m also not better. But that’s okay- that’s just part of my life. Thanks for understanding.

The post The Social Paradox of Living With Chronic Illness appeared first on Pins and Procrastination.

This is a post that isn’t easy for me to write. If you read my post about living with an invisible illness, you know how far people with chronic illnesses go to hide what is going on with us.

Well, if we’re hiding it, we aren’t having a productive conversation. We aren’t helping increase awareness. We aren’t making it easy for people in our lives to understand.

So today I’m going to get pretty vulnerable and bear my illness to you. I’m going to go through what a typical day looks like for me. It’s not like this every day- sometimes it’s way better, and sometimes it’s way worse. But for all you people out there who have loved ones with chronic illnesses, maybe this will help you understand. Only about 5 people in my life have seen what my actual typical day looks like, so this isn’t easy.

The illness I have is called Postural Orthostatic Tachycardia Syndrome (POTS). Having POTS means that your autonomic nervous system doesn’t function correctly, especially when you are standing. If you want to read more about it, here is some info. I’m not going to get into the nitty gritty, but to help you understand this article more, some of my symptoms include: racing heart rate and low blood pressure when standing, difficulty changing positions quickly, nausea, difficulty with digestion, migraines, dizziness, chronic fatigue, and plenty of others.

I’m going to talk about spoons in this post. Spoons are representative of energy for people with chronic illnesses. It’s based on the Spoon Theory, which is one of the most brilliant pieces of writing ever about chronic illnesses. So make sure to read it, it is worth your time.

So here goes the day….

9:00 Am- Wake Up. Spoons: 15

No alarm. Disrupting my natural sleeping and waking cycles is a surefire way to set off a migraine. I open my eyes and adjust to the light. I open my phone and check emails and messages. I then start the process of standing up, because I need to get to the bathroom STAT. Apparently the three times I peed in the middle of the night were not enough, so I gotta go.

But standing up isn’t simple for me, especially after laying for so long. I mentally prepare myself to prop myself up a bit. Then I move into a sitting position, slowly. I sit for a few seconds, maybe a minute, before I stand up. When I stand my head pounds a little, typically, and my vision goes a little blurry. But I push through it and walk to the bathroom. Success! I brush my teeth and then head back to bed.

9:30 AM- Spoons: 14

Surprised that standing up to go to the bathroom loses me a spoon? I’m not. I’m used to it.

I prop myself up in bed and start checking my blog and social media. I respond to comments. I look over my editorial calendar for the week. I go on pinterest and browse a little for some inspiration.

I’m starting to get hungry. Or maybe just nauseous. It’s sometimes hard to tell. I walk the 30 or so steps to the kitchen to pick out some food. If I’m feeling pretty good I’ll make eggs, but today I’m feeling like I can’t stand for long so I eat some granola and yogurt- quick and easy. Sometimes just walking to the kitchen makes me so nauseous that I lose my appetite. It’s easier for me to eat with my legs up so I often eat sitting in bed.

I keep working on my blog, maybe edit some pictures or a post.

10:30 AM- Spoons: 13

Although I’ve been managing pretty well so far, the headache that was creeping behind my eyebrows is getting worse. I’m so used to having a headache that I often don’t notice it at first. When I start getting really irritable and feeling like simple tasks are really difficult, I realize how much pain I’m actually in.

So now it’s time to weigh my decision. Should I take medication? The earlier I take it the more it helps. But I don’t like to take it if I can avoid it, so I might wait a little longer to decide if it’s really here to stay. Do I give myself a toradol shot, take a toradol pill, or take a naproxen? If I take the naproxen and the headache gets worse, it’s always a bad idea because you can only take it every 12 hours. The toradol usually upsets my stomach. I can only give myself a shot 4 times a week, so is this migraine really bad enough that I can use up one of those valuable times?

I decide to put off deciding a little longer. I am having trouble concentrating through the pain so I look for something to watch on netflix to distract me and hope that it gets a little better.

11:00 AM- Spoons: 11

I am frustrated with my migraine and I want to know what’s causing it. I didn’t overdo it yesterday did I? Or did I eat something I shouldn’t have? Have I not been drinking enough water? I check my weather app and realize the pressure is a little on the low side today. So there’s my answer.

Deciding to wait to take the medication has cost me an extra spoon. I opt for a toradol pill and take it with some water. Sometimes I need a snack because you can’t take it on an empty stomach.

12:00 PM- Spoons: 9

The migraine is really taking it out of me. I’m trying to work but having a lot of difficulty. I took some pictures of a project I’m working on for a blog post, but just maneuvering the camera was pretty exhausting.

I look in the fridge for some leftovers. There aren’t any. I don’t have a lot of energy to make something that requires a lot of work, so I make some pasta with pesto. I know I should be eating more protein.

By the time I’m done eating the medicine is helping a little more.

1:00 PM- Spoons: 7

Making the pasta and working on my blog have been pretty exhausting. I think it’s about time for my nap. I don’t nap every single day, but I probably nap about 4-5 times a week.

2:30 PM- Spoons: 8

I have a few etsy orders to make. The nap was a little refreshing so I decide that I will make them now. I mix up the ingredients and take breaks sitting while monitoring the melting and stirring. I usually listen to a podcast while I work.

I always have fun making products and I’m excited to see them come together. Once the orders are done I’m pretty oily and messy. Taking a shower will cost too many spoons so I just wash up and change into yoga pants, a t shirt, and a zip up hoodie. Pretty much my daily uniform, plus or minus pajama pants.

I also don’t think I have enough spoons to put all the packaging and shipping together for the orders, so I decide I will do that tomorrow.

3:30 PM- Spoons: 6

I head back to bed with my laptop and start editing the pictures from earlier. I find it easier to edit pictures first and write the blog post second most of the time. Standing up to work on the orders made me pretty dizzy, so I have to take breaks from editing the pictures to let myself settle a little. Sometimes I put on my glasses hoping they will help with the dizziness, but they never do.

So I push through it like usual and try to get as much done as I can.

4:30 PM- Spoons: 5

Lars and I both really like it when I have dinner ready when he comes home from work. It means I will have at least one good meal that day and neither of us has to wait until we are hangry to eat. Don’t worry, Lars alway does the dishes.

Since I haven’t had really healthy meals today I decide that I should make dinner. Dinner is usually some sort of poultry and vegetables, and usually a salad as well. I also really love making things in my slow cooker. I make some chicken and sweet potatoes, a yummy classic and super easy to make. Although the meal is easy, it still takes a lot out of me.

5:30 PM- Spoons: 3

Lars comes home from work and we eat dinner. We don’t have any plans tonight so we talk about whether we should do some chores and errands, watch a movie, maybe go out and do something. We usually decide to stay in because by the time he comes home I’m usually pretty low on spoons.

So we decide to watch a movie, but it’s one I’ve already seen before so I decide to work on my blog post while we watch.

6:30 PM- Spoons: 1

My medicine is starting to wear off and the migraine is coming back. After eating and cooking my body is feeling pretty worn out. I ate sitting up at the table, which costs another spoon (as opposed to eating reclining on the couch or bed). I really don’t want to take more medication, but I decide to because I’m almost out of spoons and pushing through the pain is kind of out of the question at this point.

7:00 PM- Spoons: 1

We watch the movie in bed so I can be most comfortable. (but one of these days we will get a comfortable couch so I like hanging out in the living room more).

Watching the movie with a migraine and working on the blog post cost me another spoon, so I’m out now.

8:30 PM- Spoons: 0

The movie is over and it’s time to wake Falafel (our pet hedgehog). Even though I’m out of spoons I need to be a good hedge-mom so I know I have to play with her.

I coax her out of her tshirt and give her a towel to stand on. Lars and I play with her and feed her treats but she is feeling like a grouch and trying hard to hide. So we decide to let her play in her maze, which is her favorite thing.

We sit around and talk for a while, checking on Falafel, who has fallen asleep in the maze.

9:30 PM- Spoons: -1

I bet you didn’t know spoons could get negative. What that means is that I’m borrowing off of tomorrow’s spoons. I don’t know how many I’ll have tomorrow. 15, like today, is pretty average, but playing with Falafel pushed me over the edge. I decided it was worth it, and I hope I don’t regret it tomorrow. I weighed the options and since we have leftovers from dinner I can probably get away with not making dinner tomorrow, so I can save on those spoons. Or maybe I will put off packaging the etsy orders another day. I’ll find the spoon savings somewhere.

10:00 PM- Spoons: -2

I get ready for bed and change into pajamas. Brushing my teeth when I’m already so low on spoons cost me another one. Spoons are relative, so the less you have, the more it takes to do simple activities.

Lars and I get into bed and talk for a while. I fall asleep somewhere between 10:30 and 11.

And then it will be tomorrow.

The dangerous thing is when you continually borrow the next days spoons. Today, I borrowed 2 spoons from tomorrow. But if tomorrow there is a bad storm or who knows what else going on, I may wake up with even less spoons than expected. I’m hoping to get an average amount of spoons (about 15) but I know I already borrowed 2 (bringing me down to 13). But if tomorrow is a bad day, I might only wake up with 9 spoons, and I’ll already have used 2 of those, leaving me with 7. Borrowing spoons is a huge gamble.

People with chronic illnesses are always told to push ourselves. What people don’t realize is that we already are. But you can only borrow off of the next days spoons for so long before the day that you wake up with no spoons at all. Pushing yourself is a balancing game, just like everything else we do. So I push myself trying to be as independent as possible and get stuff done, but there comes a point when pushing yourself is hurting yourself. And it isn’t always easy to find that point.

I don’t mean for this to be a sad article.

I’m actually a very happy person. Some of you may read this and notice how isolated I am. I spend most days at home alone and only see Lars at night. But those are my average days. Lars and I usually see his family once a week and my family once a week. I see my friends 1-2 times a month and Lars’s friends 1-2 times a month. Once in a while we have a busy social weekend and it takes me a few days to recover. I’m not completely isolated. Although, compared to a healthy person, it might really seem like it.

I work really hard on having a positive outlook and I use all different kinds of strategies. And it works for me.

I am happy with my life. It may not be what I imagined when I was younger, or what most people think of as a happy and productive life. But for me, I can find value in small things. Like days when I have enough spoons to leave the house and go for a walk. Or when Falafel does something particularly cute. Or being lucky enough to have found the love of my life and have such a great support system.

So don’t feel sorry for me. I am really happy. What I want for you to get out of this article is a better understanding of a day in the life of chronic illness. Living with limitations has certainly taught me to judge others less, and I guess that’s what I’m hoping you will get out of this. Before you judge someone with a chronic illness for not working, think about what their life is like. People who meet me when I’m out and about on a good day don’t know that I spend about 80% of most days in bed. They don’t know how hard my body is working to stand and talk to them.

So have compassion for the people in your life, because you don’t know what they’re dealing with. Whether it’s a chronic illness (physical or mental), a family problem, a traumatic experience, or anything else, you have no idea what they are really going through. They probably don’t know what you are going through either! We can all stand to employ a little more empathy in our lives.

Thanks for reading! If you liked this post, you should also check out 15 Things Not to Say to Someone With a Chronic Illness

The post Chronic Illness: A Day in the Life appeared first on Pins and Procrastination.

I am 24 years old, in a happy relationship, working at a part time internship, searching for full time jobs, passionate about the environment, have an adorable pet hedgehog named Falafel, have a Master’s degree in Environmental Law and Policy, and I have a condition called Postural Orthostatic Tachycardia Syndrome (POTS).

I’m really bad at talking about it. Most of the people who know me know that I get migraines. Only people I’m very close to or went to high school with know about POTS. I should be telling people to raise awareness about this syndrome, but I haven’t quite figured it out yet. I was diagnosed with POTS when I was 16. Eight years and I still don’t know how to talk about it.

POTS is a syndrome that is caused by disfunction of the autonomic nervous system. (It’s a type of dysautonomia). The autonomic nervous system controls and regulates all unconscious (or automatic) functions of the body. (Autonomic=Automatic. Easy to remember right?) Things like blood vessel dilation and contraction, heart rate, sweating, pupil dilation, digestion- all that good stuff that you never actively think about or control.

Autonomic Nervous System

The basic problem in people with POTS is that we can’t tolerate standing. When a normal person stands, the blood vessels in their extremities (arms and legs) contract to counteract gravity. Their heart rate might increase temporarily, but it stabilizes. When a person with POTS stands, the blood vessels in their extremities do not contract. Their heart rate has to increase to make up for the blood pooling caused by gravity. In some (but not all) POTS patients (including myself) this is accompanied by a drop in blood pressure.

This is just the basic diagnostic criteria for POTS. The other weird autonomic nervous system issues are also symptoms- things like difficulty regulating body temperature, trouble with digestion, dizziness, headaches, and fatigue (to name a few on a long and varying list). Read more about POTS on the Dysautonomia International website.

POTS is an invisible illness. This means that you wouldn’t know anything is wrong with me based on how I look. I am a rather pale person and I always have dark circles under my eyes, but a stranger might just assume I am slightly sleep-deprived. No one would ever expect someone who looks healthy to have many of the issues I have.

I remember reading in a medical report about POTS patients that every time we stand, it is comparable to expending the amount of energy a normal person does when they are running in place. Now imagine that as you are going about your daily life running in place all day. Think about how tired you would be after the most basic of activities, like showering, cleaning your home, and cooking.

The best analogy I have ever found is called the Spoon Theory. The spoon theory is actually about a person with Lupus, but it applies to people with POTS. Go take a few minutes and read it.

You’re back! What did you think? It’s pretty brilliant. All the best explanations are simple.

I don’t intend for this blog to be only about POTS. It’s just what I felt like writing about today, because I’ve been going through a tough time these past few weeks. Living with POTS, some days are worse than others. Sometimes I will feel great for a day and terrible the next day. Weather has a little to do with it, stress affects it, but it is often unpredictable.

So, I hope you learned a little something today. In future posts, I plan to write about all different kinds of things that interest me. I am a huge fan of pinterest. I’ve been making my own hair and cleaning products for the past year or so. I love organizing. I hope you enjoy reading about all the different things that I think are worth sharing. Until later!

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