This post is going to be more personal than usual, so if that isn’t your thing, feel free to click away and read some tutorials. I’ll even link to some of my favorites to make it easier for you:

• DIY Green Tea Scrub
• Homemade Glass Cleaner
• Kitchen Organization
• DIY Halloween Boo Shirt (it may be December, but I wore it just the other day)

All right- if you’re sticking with me, here goes.

I miss you! It’s been a long time since I’ve been posting regularly on the blog.

I usually try to stick to my main topics on the blog (green cleaning, natural beauty, crafts, and organization), but for some reason I’ve been having trouble finding inspiration within those categories. I still love and am passionate about them, and I’ve been doing lots of projects in the interim, but I haven’t been posting about them. And so I’ve been contemplating why that is.

For bloggers, there’s a lot of difficulty in separating your personal life from your professional life. The lines can get really blurry. I’ve had a hard time trying to find where the line should go. I could post all the time about every detail in my life, but then when would I actually live it?

At the same time, there is a desire to present a curated picture. You want to show off only the best parts of your life. So you find yourself living your life like it’s a performance. Sure, my blog is about me, but it’s about the version of me that I show to you. I feel like in trying to create the best me to present on the blog I’ve lost the inspiration that I have to write. I’ve been lost between the desire to live my life fully without stepping back to take pictures all the time and wanting to show off the best of me and my family, and it’s left me feeling like nothing I write is right.

And there’s also another reason that I haven’t been posting often on the blog, and that is my health. You’ve probably noticed that I write about living with a chronic illness from time to time, and that’s because it’s a very big part of my life. I live with an illness called Postural Orthostatic Tachycardia Syndrome, or POTS. Basically my autonomic nervous system has a mind of it’s own and likes to do silly things like make my heart beat way too fast or make me feel like I’ve run a marathon when I walk to the kitchen. In addition I also get migraines, which can really knock me out.

Living with a chronic illness can be very unpredictable, and I go through good and bad phases. And I’ve been having a rough go of it for a while now. We’ve had crazy weather this year, which definitely exacerbates my symptoms, but sometimes I just have times when for whatever reason my symptoms are worse than usual. Some days I can wake up and feel relatively like a normal functioning human being, but some days I wake up and can barely get out of bed. And lately I’ve been having more of the bad days than good. I seem to be on the upswing now, but it hasn’t been a great time.

I’ve made my peace with my illness but I’ve never gotten good at talking about it. Writing about it on the blog definitely helps with me learning to communicate about my illness, but I try not to talk about it unless I have to.

Sometimes I feel like two people- one who is optimistic and energetic and loves going out and doing things, and one who just wants to stay home and take a nap. And honestly, I think that is something that most people can relate to, whether or not they have a chronic illness. We all try to present our best selves to the world, but we’re not our best selves all the time.

Lots of bloggers will tell you that there is a lot of pressure to present your best self on the blog. The less I feel like my best self, the less I feel like I can share my projects with people.

So, enough of that. I’m me, and I’m not always my best. I’m going to be getting back into blogging, and I’m going to share the things that inspire me.

I hope that you’ll like what I decide to write about now, and I’m going to try to be even more true to myself and my passions. And I’m excited!

Lots of love from your fellow procrastinator,

Susie

The post Maybe You’ve Missed Me appeared first on Pins and Procrastination.

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 was having a conversation with my fiancé yesterday about maturing and being less self-centered, and it got me thinking. A trait we associate with the elderly is being wise. But although we know wisdom comes with age, what if it also comes with being less able-bodied?* I may sound crazy to you, but entertain my idea for now.

I find myself thinking, when I am in a darker mood, what my life would be like without any physical limitations: to have boundless spoons, to not think through every action. I try not to let myself go there, but there are times you just can’t help it. And I usually come out with the conclusion that I love who I am and I would be completely different without my illness because it has changed how I think and live. I truly believe it has made me wiser.

Compared to others my age, my priorities are different. My outlook on life is definitely different. Unlike many of my peers, I don’t partake in almost any risky behaviors. Going out all night and getting drunk, or trying an extreme sport, or even just driving fast are things that I can’t do. Some might think I’m missing out. Maybe I am. But I’ve had to readjust my outlook and goals for what I know I can handle. I know my physical and psychological limitations better than pretty much anyone I know. If that’s not wise, I don’t know what is.

I can’t distract myself with exciting things. I don’t treat my body like it will be young and carefree forever. Instead of using my body to have fun exciting experiences, which I just can’t do, I spend a lot of time thinking and reflecting. I take care of myself and I know my mind inside and out.

Talking to others my age, it seems to me they just go with the flow. They don’t know how to say no. They keep people in their lives that may not be good for them. They do things they don’t like to fit in. They don’t know what they need in a relationship or how to ask for it. They don’t know how to love themselves.

I am not afforded the luxury of going with the flow. I don’t have the energy to say yes to everything or to deal with people who make my life harder. I know my needs and I can communicate. I love myself more than anyone else I know. There isn’t much of a flow in my life; physically I am always walking against the flow and it isn’t easy. Dealing with this struggle of mine has made me learn what I need and what to do about it.

Now I’m not saying there is anything wrong with being able-bodied. All I’m saying is that when you can’t have crazy reckless fun in your 20’s, it can make you wiser faster than those who can. And there is nothing wrong with that. Different life circumstances dictate different actions.

As humans, we are extremely adaptable. We adjust to situations to the best of our ability. We learn new skills. Maybe being wise is a skill for those who are not able-bodied. Being unable to do “normal” activities takes a lot of adjustment and reflection. We adapt. We become wiser.

You could make the argument that going through any kind of struggle makes you wiser. I definitely think that’s true. One part of wisdom comes from experience. But for those with chronic illnesses, wisdom comes from realizing your own limitations, accepting them, and adapting. Wisdom comes from stepping outside the cultural norms for your peer group and learning more about yourself and what you can handle and enjoy. Those who are able-bodied don’t have to learn their own limitations until they age. I learned mine when I was 17.

Sometimes I feel chronic illness has taken a lot away from me. But in all honesty, it has given me so much more than it has taken. So, to my body, I say: thanks for the wisdom.

*I am speaking from my own experience of having physical limitations. This in no way means that chronic illnesses do not include mental illnesses that still leave you able-bodied. For those with mental illnesses, just replace able-bodied with people who don’t have mental illnesses. 

The post Does having a chronic illness make you wiser? appeared first on Pins and Procrastination.

One of the things that I’ve learned in my life is that everyone has a struggle you wouldn’t know about from meeting them. Every person is going through their day, battling something that no one else knows about. And that is their secret identity.

I’ve talked on this blog several times about my own “secret identity,” or my struggle with the chronic illness Postural Orthostatic Tachycardia Syndrome (POTS). Well, I thought it would be good to showcase other awesome people with their own struggles. After all, everyone’s struggles are equally valid, important, and interesting to learn about. So I’m starting a new series called Secret Identity.

My goal with this series is to remind people of a few things. First, don’t be quick to judge. You don’t know what someone has been through or is currently dealing with. Second, be empathetic, because we are all human beings. Third, you never know everything. There is more than meets the eye. And fourth, you aren’t alone. Everyone else struggles too.

So, this is my first secret identity post. I’m here to tell you the story of Sammie Virella.

Mouse over to see Sammie’s Secret Identity

To the outside world, Sammie Virella is an active college student. In between biology classes she is an active member of the marching band (or Big Red Marching Machine, as they call it) at Illinois State University. She is an avid reader and fan of young adult fantasy and was into every popular series before you had ever heard of it. So, if she recommends a book to you, it will probably be a movie in about 2 years. You may have noticed that Sammie does miss a bit more class than the average student. She is one of the silliest and most outgoing people you could ever meet, so you probably notice when she’s gone.

What most people don’t know is that Sammie suffers from a myriad of chronic health problems. She has a rare genetic heart condition, chronic migraines, and fibromyalgia, just to name a few. She has gone through countless surgeries including getting her gallbladder removed, a heart ablation, getting her tonsils out (TWICE- they grew back!), and a few others. She is in and out of school, often spending time in the hospital or at home to be closer to her doctors.

If you saw Sammie on the street, you would probably think she is like any other college student, overworked and sleep deprived. While that may be true, the dark circles under her eyes don’t even begin to tell the story of her struggle.

Sammie started getting migraines at the age of 6. As a baby, she already had some issues with her nervous system, and would spontaneously forget to breathe. As a teenager she suffered from numerous migraines, concussions, digestive issues, heart issues- you name it, she’s lived through it. Through all her health issues and roads to diagnoses, she maintained a mostly normal and active school and social life.

Sammie played trombone in band in high school, which wasn’t easy for her. Despite her love of music, the loud instruments during practice further exacerbated her migraines. She pushed through it. She is an incredible athlete, having lead her high school water polo team to the state championships year after year. Waking up early to make it to 5am practices was particularly difficult for her because her pain is worst in the morning. She pushed through it. She sat through entire days of classes even with migraine-induced blurry vision struggling to pay attention. She pushed through it.

Sammie can’t remember what it feels like not to be in pain. She is ALWAYS pushing through the pain to accomplish everything from small daily tasks like brushing her teeth to bigger activities like hours long biology study sessions.

All this takes a toll on your body and mind. Sammie has struggled with depression all throughout college. Missing out on her favorite things has been more than difficult, it has left a permanent mark. Sammie can no longer play water polo because of the risk of head injuries, and she has recently taken a step back from college marching band to focus on her studies. These are her passions; they help her keep going. Missing them feels like missing a part of herself.

Sammie is incredibly strong. She does everything she can while pushing through pain and depression. Despite all she has been through, she does her best to stay hopeful and optimistic. And no matter how bad she feels she is always the first to try to cheer up a friend or look out for others.

Sammie is bright, brilliant, and a wonderful person with a big heart. In her own words, she describes the takeaway from her struggle:

Not everyone has medical issues, but everyone has something. Whether it be family issues, friend issues, failing a class, not getting your dream job, etc., everyone has an issue that they are fighting with everyday. Nobody’s perfect. We all have struggle that we have to get through everyday.

I couldn’t have put it better myself.

Want to share your story? Just fill out the contact form and let’s get started!

The post Secret Identity: Sammie Virella appeared first on Pins and Procrastination.

First, make sure you can travel

Us spoonies are known for biting off a little more than we can chew once in a while. Talk to your doctor before you plan a significant trip. If you really aren’t up for it, you can find a compromise. Maybe you can stay at a hotel for a few nights in the closest city to you instead, or just take a day trip to a nearby destination. It might be less exciting than a big trip, but your body has limits and you have to listen to them. If traveling is going to set you back in your treatment or could injure you seriously, consider whether it is actually a good idea for you.

The transportation itself

Planes, trains, and automobiles can take their toll. It can sometimes take me a week to recover from a particularly long plane ride- which is usually how long a vacation lasts. So anything you can do to make the travel easier on you is good.

At least a few days before you travel, picture yourself sitting in whatever mode of transportation you will be on and imagine all the discomforts. Yeah, this sounds awful, but bear with me. If you can, think of something to alleviate the discomforts that you can bring with you. A neck pillow, some tylenol PM, a sleeping mask, compression stockings, ear plugs, and a refillable water bottle can be the difference between you spending the day in bed tomorrow or being able to venture out and explore a bit!

It’s probably a good idea to take Vitamin C the week leading up to travel to help prevent catching colds from the travel. Every time someone coughs on a plane, I’m a little paranoid. Am I the only one? And as much as I hate the stuff- it can’t hurt to carry a little bottle of hand sanitizer with you any time you use public transportation when you’re traveling. You can’t afford a virus on top of the stress of travel.

If you are flying, give yourself extra time at the airport. Less stress is good. It may mean waiting around more, but it also could mean standing in lines for shorter amounts of time and not rushing to your gate. And you never know if you need to stop and rest or face some other obstacle on the way to the gate. So prepare for that.

Make sure to bring any essentials in your carry on. Yeah, you may only take that one pill once every three months when you get a killer migraine, but if that day is tomorrow and your luggage is lost, you are out of luck. So if you need it for your health, carry it with you!

The key here is to plan ahead. You can’t afford to plan everything at the last minute. It could make your travel much harder.

Swallow your pride

Are you embarrassed by the cane you need when your knees flare up from rheumatoid arthritis? Or if you need to use a cart or wheelchair to make it across the airport without passing out? I get it. People sometimes give you a hard time for it, people stare at you, and you feel out of the norm.

Well, truth time: you just have to suck it up. This isn’t the time to push yourself to your limits. Traveling and getting out of your routine is already hard enough for your body, so you need to do whatever you can to make it easier.

My family made fun of me one time we were on a plane and I had on my sunglasses and a scarf wrapped around my head. Well, I had a migraine and the sunglasses blocked out light and the pressure from the scarf helped with the pain. So I took the teasing and the weird looks. And I was much more comfortable because of it.

Are you the only one on your trip in a heavy coat because your body can’t regulate it’s own temperature? I feel you. Do you wear your sunglasses at night? I get it. Do you sit down in the middle of crowded areas to avoid passing out? I’ve been there. You have to swallow your pride and LISTEN TO YOUR BODY!

I wish I could say I staged this photo because it is too perfect for this topic- my shirt even says pride on it. This was in 2008 in Florida. When waiting for a bus I laid down in the parking lot with a water bottle on my head for my headache. I looked ridiculous, but I needed to do it.

Expect the best, prepare for the worst

Prepare for bad scenarios. You never know what will happen when you are on a trip. The most important thing I always do when I travel is make sure that I have 2-3 extra nights worth of my medicines in case we get stuck in another location for longer than expected. Flying into Chicago, it is not that surprising to have a flight cancellation because of weather. So I am prepared for it.

Like I said for bringing meds in your carry on, always bring the one med that you almost never have to use. Because if you need it, you will be glad you have it.

And let’s be honest, you may not be able to participate in all the activities on the trip. So prepare to spend some time alone in the hotel room. Bring books, movies, audio books, or whatever you can do to keep yourself occupied/ entertained/ sane while you are alone. Not everywhere has free wifi- so maybe download a movie from iTunes before you go so you know you have it ready.

Don’t forget to bring lots of snacks. Wherever you are going might be lacking in gluten free/ dairy free/ low histamine/ paleo/ raw/ whatever diet you might be on to help your health.

It doesn’t hurt to have a go bag ready to bring to the hospital if that is something you might need. Just bring it along inside your carry on and have it ready if necessary. And that includes knowing where the closest hospital is to where you are staying. You probably won’t need it- but if you do you will be glad you have it.

And definitely stay organized! The less time you spend searching for something like a water bottle, a pain pill, compression stockings, an instant ice pack, or anything else you need in a pinch, the more spoons you’re saving. Think of the spoons!

Talk to your companions

Hopefully the person or people you are traveling with already understand your illness, but if they don’t make sure to fill them in. They will need to understand if you are unable to do something or need to rest once in a while, or whatever limitations might arise. This goes along with swallowing your pride. It’s not always easy to talk about your illness.

If you have trouble, give them the brief version and then print out some materials from a source you trust. But definitely give them the heads up of any situations that could arise because of your illness. You don’t want anyone unprepared to help you- or panicking over something that is a small deal for you. Communication is key.

Have fun, but don’t push yourself past your limits

You’re on a trip and you are probably going to push yourself a little to try to fit in all the vacation fun. Although it may feel like you’re taking a little break from the real world, unfortunately, you’re still in it. And you still have your limitations. It’s not bad to push yourself, but it is bad to push yourself to a point where you are hurting yourself in the long run.

So- don’t forget: drink at least 8 glasses of water a day, get those fruits and veggies, get AT LEAST 8 hours of sleep a night if not more (c’mon it’s vacation- you have the time!), and follow the protocol for your treatment. Listen to your body if it is telling you to stop or take a break. (How many times should I say listen to your body? You got that part? It’s especially important when you are out of your comfort zone!)

Prepare yourself mentally before you leave to know that you may not be able to do everything on your dream vacation itinerary. It just isn’t always possible- even non-spoonies get worn out! So have a great time on your trip, but take care of yourself. You may be on vacation, but unfortunately you can’t take a vacation from your illness. It’s part of who you are, and you are awesome.

You’re gonna have a great time on your trip doing what you can and taking care of your health!

Hopefully these tips will give you some ideas to help you with your next trip. What else do you do to help you when you travel?

The post Tips for Traveling with a Chronic Illness appeared first on Pins and Procrastination.

Everyone has a struggle. Whether that struggle is some sort of chronic illness, or something else in your life, you just have to laugh at yourself now and then. Especially in a situation when you have the potential to start feeling sorry for yourself.

Like my mom always said, “life isn’t fair.” So, you just have to make the best of what you have. In the case of a chronic illness, you have to find the positive side of it. And one of the positives is often humorous situations.

Like the time my cousin was in the hospital on painkillers for a migraine that wouldn’t go away and came out of the bathroom saying, “when I pee, rainbows come out!” And my family always likes to tease me for when I was younger and I had migraines, I would ask them to sit on my head. Its weird, but the pressure helped the pain. Why judge when you can laugh about it instead?

So here’s a little humor about chronic illnesses to remind you that life is silly.

Chronic Illness Memes

User submitted Someecard

Quick Meme

Chronic Illness Cat Tumblr

Living the Spoonie Life

Chronic Illness Memes Tumblr

Crohn’s Girl In Pain Tumblr

Some E Cards

(Continued on the next page)

The post Chronic Illness Humor appeared first on Pins and Procrastination.

A few weeks ago, I wrote a post about 15 Things Not to Say to Someone With a Chronic Illness. It has been by far the most popular post on my site. I am so glad that it has resonated with people, and hopefully a few people learned how to better relate to people in their lives with chronic illnesses.

A few people have mentioned to me that I should write about what people should say to people with chronic illnesses. So I can’t guarantee this list will apply to everyone, but here are 10 things that people with chronic illnesses want to hear:

1. I believe you

I already mentioned that this is the most powerful thing you can say to someone with a chronic illness. People who live with chronic illnesses are often met with doubt. Seeing is believing, and when you look outwardly healthy, people have a hard time believing you feel as sick as you say. For a person with a chronic illness, having someone believe them is validating and comforting. It will help them trust you because they are probably worried about whether you and the people in their life believe them or not all the time.

2. Can I come over and hang out? 

Asking them if they want to come and hang out can be good too, but sometimes just the thought of leaving the house can be overwhelming for someone with a chronic illness. It takes up valuable energy- leaving little to do the fun activities that they were planning to do outside the home. You offering to come over is a huge gesture. It shows that you want to spend time with them, even if they aren’t up for leaving the house or doing something that takes energy.

From the Facebook group, You Know You Have EDS When

3. Can I bring you food? or, Can I come over and help out around the house?

Obviously these aren’t things you should say or do all the time, because you probably don’t have time to do this every day. But on a day that you have time, or if you are already running errands for yourself, taking the extra few minutes to help your friend with a chronic illness will make a huge difference for them. For me, sometimes just doing the dishes is enough to make me need to take a nap. And on bad days I struggle to find the energy to get food. Offering to do these favors, whether or not they accept, is a wonderful gesture. It will help someone with a chronic illness feel that you understand what they are going through and care about them. Offering something specific is more helpful than just asking, is there anything I can do? (Not that that isn’t good to say as well!)

4. I know how hard you are trying 

This is the opposite of “why don’t you just push through it?” and it is one of the best things you can say. Everyone likes their hard work acknowledged, but most people don’t see just making it through the day as hard work. For someone with a chronic illness a lot of times it really can be. And when I am working really hard just to make myself exercise for 10 minutes or do my biofeedback for the day, that outside encouragement can be the motivation to help get through it.

5. Any kind of hello or checking in after not seeing them for a while

Sometimes someone with a chronic illness doesn’t leave the house for a long time, or misses a lot of school or work. And adding to the difficult of their illness is the feeling of being forgotten or left behind. Out of sight, out of mind, right? So just checking in and saying hi and letting them know you’ve been thinking about them when you haven’t seen them around lately will go a really long way. It will probably make their day, and you will feel good for reaching out to them.

6. You are so strong

Constantly being in a fight with your own body is hard work. People with chronic illnesses usually feel weak from this fight, either physically, mentally, or both. Hearing that they are strong is validation that all their hard work is not unseen. And it can serve as a reminder that they have the strength to keep fighting day in and out.

7. I know how hard this was for you- thanks for using your energy to spend time with me

A friend of mine mentioned that her friend once said this to her after a long phone conversation. I realized how touched I would be if someone said this to me. Saying this helps a person with a chronic illness feel that you understand what they are going through and appreciate having them in your life. It also should make you feel good that someone with a chronic illness chooses to spend their limited energy with you, because it means they care about you!

8. Don’t feel bad if you have to cancel plans at the last minute, I understand

One of the constant feelings that comes along with a chronic illness is feeling guilty or like you are a burden to people in your life. I always feel terrible for canceling plans, and I sometimes do it at the latest possible moment because I am hoping I will feel better. And I sometimes beat myself up about it, even though it’s out of my control. I know this is common for people with chronic illnesses. Letting them know you don’t hold it against them will help alleviate that guilt. And it will make them more likely to make plans with you in the future, because they won’t be afraid of losing you as a friend if they cancel on you too often.

9. Sometimes the best thing you can say is nothing- just a hug or lending an ear

This is true of all people, right? Not just those with chronic illnesses. Sometimes the best, most supportive thing you can do for a friend or loved one is just show your support through a loving hug or letting them vent to you. Hugs are good for your health, so go hug your friends who have chronic illnesses. Usually just being a good listener is more helpful than trying to give good advice when you haven’t experienced chronic illness first hand.

10. I know this isn’t your fault

One of the main themes running through a chronic illness sufferers head is often self-blame. Which is totally unreasonable for most people. But it’s hard not to think, “If I only pushed myself a little harder” or “If I only ate a little healthier” or “If I only exercised for 20 minutes yesterday instead of 10 I would be better.” People with chronic illnesses learn from experience that these “if only’s” are just wishful thinking. Because the illness is not your fault. And so having an external reminder of that fact can really help solidify that idea for people with chronic illnesses, and help them remember that you don’t blame them for it either.

BONUS: When all else fails and you aren’t sure what to say: I wish I knew what to say, but I care about you and I’m here for you

You may never understand what it is like to have a chronic illness, and that is ok. That’s actually good, because it’s not usually a fun experience. But when you can’t think of what to say, it’s ok to say you don’t know what to say. And follow it up with a reminder that you care about them and you are there for them if they need you. Because when it comes down to it, it’s not about saying the absolute perfect thing, it’s about showing that you care.

This list is not meant to imply that these are the ONLY things you should say to someone with a chronic illness. All of these things should get through to someone with a chronic illness and be touching for them, depending on who the person is. Having a good support system is important no matter what situation you are in, and so these kinds of things let the person in your life with a chronic illness know you are on their team.

And if there are more things you wish people would say to you as a chronic illness sufferer- feel free to leave them in the comments!

Don’t forget to check out 15 Things Not to Say to Someone With a Chronic Illness!

And on the lighter side of things… Chronic Illness Humor.

Thank you so much to Shira Azaraf, Julie Davis Godnik, Jodi Collicot-Hartzell, Stefanie Shea, and everyone else who helped me come up with this list!

The post 10 Things You Should Say to Someone with a Chronic Illness appeared first on Pins and Procrastination.