Sometimes we really need to examine the amount of energy things take up in our lives. That’s why I’ve recently been working on my spoonie photo project – enjoy!
Category: self-care
Self-care Sunday: traveling with a chronic illness
As you read this, I’m enjoying my last day in Orlando at the JA conference and working on heading home to Wisconsin. Naturally writing a post on traveling seemed like a great idea… mostly because maybe I can remind myself while I write this of things to do.
The first and biggest thing is to relax and rest. I think it’s natural to get anxious when traveling with an illness, especially if it’s hard on your body.
Make sure that when you are traveling for leisure that you make sure to plan for breaks. Tackle one big thing in a day and maybe leave a flex day in case you’re not feeling well. Pacing yourself is the name of the game, especially if you’re going to a major destination like a theme park.
T and I always try to plan what we want to do and leave a flex day or not finalize things other than out hotel arrangements so that we have more flexibility in what we do.
It can be super tempting to load up on the caffeine, especially if there’s a time difference between where you’re going and where you live. It’s totally fine to do that, BUT you also need to make sure you’re drinking enough water. A good rule of thumb is to have a glass of water for every caffeinated – or alcoholic – drink you have.
I usually try to snag Smart Water when I’m traveling. It has electrolytes which are good but it also comes in a gigantic bottle, which means you get a lot for the money you pay. Since it is a little pricier, you may be more inclined to finish the water too. I know I am!
Make sure you eat enough when you’re traveling too! It’s really easy to get caught up doing something fun and almost forget to eat. Making sure you eat enough will help you have energy to do the other things you want to do.
If you’re traveling, let yourself indulge a little bit okay? I have a potato problem, so when we go places that is often my biggest indulgence… okay, and dessert, but DUH.
That said, make sure you’re eating enough protein for energy and getting enough healthy things in you.
Organizing will make traveling a lot easier. Work on gathering things for your trip early on. My coworker starts a pile in her living room and everyone works off of a list, adding to it every day. They check off the item when it’s in the pile, which helps them keep track of what they’ve already got ready to go.
It may not be as simple to do that, but you can usually start small. Our trip to Orlando had me working on a list at the beginning of the month. It was easy because T was gone for the week so I felt like I had to do things! More than that, a lot of the things that I was working on packing were things that I don’t wear on the regular – crop tops, short shorts, etc.
Don’t worry, the sunscreen will make it into our bags too!
This also includes prepping meds. Making sure you have a pill organizer that can hold your pills or, at the very least, that you can fit the pills you need in your luggage or purse.
This is my pill organizer.
The inside is great because it has more than enough room for up to two weeks of pills for me, depending on how many vitamins and such I’m taking. I may just put those in a separate pill holder.
Some medications really should have a note with them, like biologics. It makes it easier to fly with them. This also means you need to have a cooler and whatnot to keep those items at the best temperature you can while traveling.
Luckily, that means you’ll work on bringing ice packs with you!
The last time I flew, I took advantage of pre-boarding. I am SO glad I did.
I didn’t use a wheelchair, but I could’ve definitely used it at some points! It was so much easier to get on the plane first because I wasn’t having to walk in a different and uncomfortable pattern. I also was able to easily navigate the rows with my bag instead of that awkward aisle shuffle. I was able to get settled into my seat without so much hassle as well.
I don’t think I’ll fly without it – unless we can get the exit seats.
What are some tips you might have?
Self-care Sunday: ruminations on strength and integrity
For most of my life, I’ve hated the word strong. To me, it’s a reminder of all the times I was told to be strong as a code for shutting up and shutting down my appropriate emotional reactions or that I would be the one to have to keep everything and everyone together.
Either way, it’s a pressure that a child shouldn’t be forced to bear let alone think about. Add to all that the inspiration porn-like way strength is used towards those in the chronic and/or mental illness communities and it’s no wonder I have an issue with it.
Like seriously, this is ableist in SO many ways. It denies us, again, the ability to experience and express our emotions which is really bad not only for our mental health but for our physical health as well.
UGH.
Lately, though, I’ve begun to embrace this word as it rightfully should be used.
I think that strength is about dealing with the hardships we face and admitting what we’re dealing with. Strength is making it through all of that despite how many times we fall down. Continuing in the face of all that adversity is worth of admiration and celebration, especially if we come through intact and true to ourselves.
There is definitely something to be said for the crap we all must go through in our lives. I think that any illnesses we deal with just add to that whether they’re chronic or just long-term, mental or physical. I am a 27 year old woman living with chronic and mental illnesses that are basically a product of the abusive home I grew up in, which led me to further abuse. I cut contact with the toxic and abusive people in my life and starting building or rebuilding bonds with the best people I’ve ever known. The fact that I’m alive right now through all that shit is amazing.
Most of all, I think that the most incredible thing is that I’m happy – happy to be alive, to be a chronic illness fighter and advocate, to be someone who helps others, to be a piggie momma and wifey and sister and auntie… That’s all awesome, but the best thing of all is that I’m true to myself.
Am I still dealing with coping with my illnesses? Totally. Do my mental illnesses sometimes get the best of me? Yup. Am I passionate about making sure people are inclusive? Sure. But all of that is true to myself, to the problems that I see.
We all need to learn that our opinions are the most important in regards to ourselves. Do what makes you happy as long as you’re not harming others with your actions.
Self-care Sunday: getting started
I’ve talked a little bit about getting started on my journey to self-care and self-love. It hasn’t been an easy one for sure but it’s been a worthy one.
Not everyone has the support system or the access to care that I do. It’s upsetting because all life is equal and I wish that our society at large reflected that belief instead of capitalism but I digress.
Since not everyone has these things, I thought it would be good to share some resources on how to get started in the self-care/self-love game.
First up is this amazing starter kit page from the School of Social Work at the University of Buffalo. Here you can learn more about what self-care is, develop a plan for yourself, and have tools to check in with yourself on how you’re doing. They even have this great self-care worksheet you should totally look into! This was originally developed for their students I think, but I’m really glad that they’ve taken the time to share this with others.
The University of Kentucky has a very basic PDF here as well. One of the things I like about this is that they include examples of self-care in the various sections. East Carolina University has a checklist that’s pretty handy.
Sometimes it’s more helpful to figure out what something is by learning what it isn’t. This site suggests that you develop an absolute no list, which can be very helpful.
If you’re someone that needs research and science behind things you do, this page has 25 things you can do that are proven to help enrich your life and take care of yourself at the same time.
If you need something a little more concrete and immediate, this is a great weekly planner.
Sometimes self-care just means watching some Netflix in the tub with the lights off and candles lit. Find something funny and let yourself laugh your ass off.
In any case, today I want you to do something good for you. Maybe it will be filling out one of the worksheets above and learning more about self-care and self-love. Maybe it could be dancing in the shower or laughing in the bath. Maybe it’ll be baking blueberry muffins and eating half the batch because they were delicious. I definitely wouldn’t blame you… mostly because I did the same thing like three weeks ago!
And blueberry muffins are legit amazing.
Self-care Sunday: embracing the weird that is me
My word for June was ’embrace.’
I’m excited to say that I think I have done that on so many levels for myself.
Over Memorial weekend, I went to the Arthritis Introspective National Gathering (G8) in Milwaukee. I got to hang out with good friends – and finally MEET some of them!
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| I’m still reeling over meeting Britt! LIKE OMG |
That gathering was amazing. It felt like home to me and that was something that I’ve been looking for for a long time.
It also has gotten me started on some really exciting projects that I can’t wait to tell you about – but I have to for now! GAH. As a preview, one of them has to do with the sexytimes.
Oh yeah.
I also embraced what my true calling is and made the decision to go back to school this fall for my MS in Health Care Administration with a focus on Health Care Advocacy and Navigation. What can I do with that degree? Move up in my current workplace or even be a professional patient advocate and go to appointments with people!
Part of why June was about embracing for me was because I needed to embrace who I really am. I still haven’t figured it all out, but I don’t think any of us do before we shove off this mortal coil.
In order to really embrace myself, I’ve had to deal with some hard things in therapy. It’s going to get worse I know, but it’s worth it. I’m not going to let go of my past, but I am going to OWN it.
I will no longer be a victim to my disease or my mother or anything else. I am what I make of myself, shitty past or not. I am a funky ukulele playing guinea pig parent who had a baseball wedding and believes in ghosts – and talking to them. I am a bomb ass wife, learning how to really be a sister and a daughter. I am a chronic illness patient and volunteer who loves talking openly about silly subjects.
Most of all, I’m a silly optimist.
Self-care Sunday: chronically bad ass patient’s bill of rights
One of the things that I’ve always found hard about SJIA or fibro or other illnesses I have is how people can’t see what I’m dealing with. It gets easy to judge me or others as abusing the system (parking, SSDI, whatever) because we’re fat or lazy or whatever.
I also realize, however, that it does make me privileged. I can pass as normal, no matter how I’m feeling, and no one ever has to know. This is handy for jobs, dates, and a whole handful of things that I know I take for granted.
In doing some soul searching, I’ve realized that I don’t utilize assistive devices as much as I should as a result of all this. If I look otherwise fabulous, I’m not going to want to show off that I’m sick. Recently, I’ve been working on getting over that shit. Seriously, who has time to care?
With this flare kicking my ass, I’ve worn just about every brace and wrap and sling I own to work or with friends or at home. I mean, I’ve gotten to the stage where I’m comfortable farting in front of T now. Is a shoulder sling or K-tape really going to affect what he thinks of me?
Seriously though, it’s one of those things where I find myself blessed and cursed all at once. On one hand, being able to sometimes do is HUGE. On the other, validation and having people believe you that you’re in pain is also huge.
Neither way is better and both have trade-offs… though there really isn’t much we can do about those.
It got me thinking about how we often don’t feel like we have the right to be sick. That can be from chronic issues or acute issues too – like when you hear someone say that they can’t afford to get sick right now.
Sometimes that’s a very literal thing and that sucks. Sometimes that means you’re a mom and you don’t get sick days. Sometimes that means you’re chronically ill and don’t have enough sick time to get normal people sick.
When you go to a hospital or clinic, sometimes you’ll encounter a patient’s bill of rights. That normally includes things like being heard and getting good care, etc. Today, I’m writing one for us to use for ourselves.
Here is the chronically badass patient’s bill of rights:
- I have the right to be sick, whether that’s acute or chronic.
- I have the right to get the best and most appropriate treatment for my issues. If you want to help, ask me first before you go spouting the latest diet/exercise/talk-show/starvation/self-harm/new-age/homeopathic/homoerotic/gluten-free-sex trend. Chances are I already know what I’m doing. I appreciate the sentiment, but just don’t.
- I have the right for others to acknowledge my illness, even ask about it, as long as they realize that I am not obligated to give answers.
- I have the right to be heard when I’m in pain. This can mean stopping an activity that is giving me pain with no questions or going to the emergency room when I need to.
- I have the right to use assistive devices that help me, without being questioned about being a walking wheelchair user or being able to walk without a cane.
- I have the right to nap. I’ve spent too long trying to keep myself awake when my body needed the rest because I didn’t feel as though I deserved it.
- I have the right to curse like a goddamned sailor. It helps with pain levels.
- I have the right to feel damn sexy. Sometimes that means dressing up and looking fly. Sometimes that means enjoying my body by myself or with someone else. No one gets to judge me for that.
- I have the right to say no to something and not feel guilty, whether that’s attending an event or talking about my illness or whatever.
- I have the right to treat myself, even if I live on public assistance. I currently do not, but I would not deny myself the occasional Reese’s PB cup because I’m getting a ‘handout’ if I was. (So much I could say here…)
- I have the right to have fun. Even if I feel like shit, having fun keeps me going. Should I be on the floor a lot? No, but crawling around after my guinea pigs keeps me young and happy and enjoying my life. Don’t judge that shit.
- I have the right to process my illness (or any other) issues as I see fit. If I want to be dark and brooding, let me. If I want to be Pollyanna, let me. Don’t judge or compare me to others. It may be easier for those who haven’t been abused or in a PTSD situation to be focused on the positive because their brains aren’t LITERALLY wired to think of the worst case (no I’m not fucking kidding).
- I have the right to be as involved in my care as I choose to be. Docs, this means you gots to get on board with us being partners in our care. You may get paid to help us, but you don’t live in these fucked up bodies.
- I have the right to get a second opinion about my care. Don’t get pissy about it.
- I have the right to be a person. I am a person before I am a guinea pig mother or wife or aunt or sister or patient.
What would you add?
How the rules of improv can help us lead better lives
I went on another library emptying spree the other day. One of the things I did was put a few audio books on hold because it’s SO much easier to listen to a book than read it sometimes… especially right now when I got my crip hands.
UGH.
One of the audio books I picked up is Tina Fey’s ‘Bossypants’ and I’m loving it. I get a little confused about some things because it isn’t exactly chronological but hey it just keeps me on my toes!
As I was listening to her read her own book (yes, it’s everything I want it to be), she started talking about her improv experience with Second City in Chicago. She started to discuss the rules of improv and for some reason they really hit home for me. It seems like they’re honestly great rules for life!
To do anything, you have to agree to it. You can’t go forward if you aren’t participating. In improv, she talks about that your partner might hold a ‘gun’ at you. If you say ‘no, that’s just your finger,’ the scene has nowhere to go.
However, if you agree and ADD to the conversation, then things can go forward – ‘the gun I got you for Christmas??’ is her example.
The idea in these first two is that you have an open mind, respect what your partner has created, and contribute. Don’t just rely on someone else to answer the questions or make up the scene for you.
Something Tina feels is especially important for women is to make a statement. This goes along with not asking questions all the time. Above all, ladies especially, don’t have apologetic questions. Her example is a surgeon consulting with their patient and the conversation goes something like this – “Hi, like I’m gonna be your surgeon?”
You need to make statements with your voice AND your actions.
And this last point is just SO Bob Ross:
There are no mistakes. Take the accidents as opportunities. Maybe that means you wind up being a T-rex going through the obstacle training to be a cop or whatever. Maybe that means your original idea isn’t valid or going to work anymore. Guess what? That’s okay.
Now, we do need to be careful with some of this. When you don’t always have spoons to use, saying yes to everything doesn’t exactly work. When you have poorly defined boundaries, saying yes to everything doesn’t work.
I think the point is more to keep an open mind about what’s out there for you and about what you can accomplish.
Self-care Sunday: treat yourself
Have you ever felt like you’re not good enough to be where you are? It’s something that I’ve struggled with a lot and it seems to be really common among abuse survivors AND chronically awesome peeps. Hooray for the double-timing!
Anyhow, here are some ideas to help with that.
If that didn’t help, maybe you can embrace your different-ness like me!
Being different is beautiful. We know it because it’s a trait that we love to see in others. Maybe you love how Fit Aimee handles her illness issues or how funny Hurt Blogger is or how supportive Dawn is with #spooniechat. Each of them is someone you like because of the things that make them different than others.
Why are you treating yourself any differently?
Sometimes I think honestly it’s because we don’t know where to start. You have to learn who YOU really are, embrace him or her, and stop caring about what other people think.
One thing that can help is to date yourself. I mean, you don’t just marry someone without getting to know them, so why keep existing without knowing yourself?
My favorite date I’ve taken myself on was probably ghost hunting in San Francisco for a night while I was out there visiting Sammy. I needed to be there, but I also needed to do something for me too. The first date I took myself on, though, was to the movies. I hit the early morning showing of The Dark Knight Rises.
It felt funky to buy myself my own popcorn and sit alone in the theater… but I also was able to sit right up by the screen and ignore the very few other people around. After the movie I got a pedicure for the first time and loved it, even if it was awkward.
I try to do something every day for myself now because of how nice it felt to have that time. It might be going for a drive or indulging on food or buying ANOTHER new purse. It all depends on what it feels like I need at the time.
Some people think the idea of loving yourself is weird. I gotta tell you a story…
My social studies teacher in eighth grade really got me. He helped me to stop being so afraid of answering questions and being smart in front of others. He also was really supportive of me when I was having rough times. I told him at one point how annoyed I was that I wasn’t normal and he stopped me right there.
Normal, he said, was so boring. No one is normal because we’re all so different. Instead of trying to fit into this invisible mold, we should work on breaking it and being as weird as we can… because weird, it turns out, is the norm.
Kudos to you, Mr. Wayland, for planting that idea into my head.
Even though it’s painful or awkward sometimes, I’m embracing my weird. And I love it.
If I ever forget, I just remember my favorite place full of weird back in Oregon:
Self-care Sunday: saying no and resting (aka flare up essentials!)
It is so hard for everyone to create boundaries, but especially those of us with chronic illnesses. We often think that we have to overcompensate for our “shortcomings” or illness issues by taking on too much and not saying no enough. We all have to learn that no isn’t a bad word – it can really save us as long as we practice.
One of the things that I learned at AI last weekend was how important it is for us to not only say no but to REST and get help. Those aren’t always things that we’re good at – heaven knows I’m not! – but they’re important skills for us to have. Another huge thing we need? To stop pushing ourselves so much. If, like me, you’ve worried about how people will perceive you then, don’t. If someone truly cares about you, they’ll be glad that you take a time out when you need it.
Right now that is something that I’m practicing. Despite the fact that I’m flaring, I really want to do more things to prove that I’m still able. One of the hard things with chronic illness is that your body isn’t quite as dependable as we might like. Right now my abilities are changing moment to moment, and that’s really hard to mentally process… especially if you’re into having control. Of course, a huge part of that too is wanting to believe or prove that we aren’t lesser beings for being ill.
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If you feel that way often, please recognize that it’s okay to want to talk with a therapist. There is such a huge mental health stigma in our society and it scares many people away from getting help they need. If you’re in that boat, please don’t feel afraid to talk about what you’re going through even if it is just with a trusted person in your life or with the spoonie community online in an anonymous format. If you’re feeling bummed, there are a lot of fun things you could do to momentarily cheer yourself up. I’ll add another – cake!
Maybe you need some tools to help you rest instead. I love this post from Buzzfeed on cool websites. My favorites are this 60-second meditation website, paint with sloths (does this even need an explanation??), The Office Stare Machine, and Calming Manatee.
So this coming week, let’s try to work on ways to say no and ways to rest up when we need to. It isn’t always easy.
Self-Love Sunday: allowing yourself to feel emotions
I was just talking with my sister about how I don’t like how our society handles the word strength. We tell people to be strong during hard times, essentially telling them to stuff all the negative or sad emotions they may have during that time way down and ignore them. And we comply.
We may go to therapy to get out those emotions instead of expressing them to others. We may take up martial arts or be gruff with others. We stop communicating as we should, insulating ourselves from anything that could possibly hurt us. We act tough, manly, impervious to problems around us.
Why do we do that? Why do we deny ourselves the ability to experience our emotions?
I have learned that I can’t do it anymore.
A long time ago, I was told to be strong by several people. I think it started when I was first sick and everyone thought I was dying. I saw how much it hurt others if I ‘bothered’ them with how I wasn’t feeling well. That continued on and I didn’t really speak up for myself.
I held in emotions, becoming frankly a giant asshole. Kelsey would do something silly like spill water on me and I’d go off and get angry instead of playful. Â I’ve not always been a nice sister, or person for that matter. I’m coming to terms with the fact that it’s okay. No one is perfect. Kelsey and I have done a lot to piss each other off – but we’re always there for each other when we need support, and that’s the point of sisters.
I have learned that holding in emotion is literally toxic for me. If I have a big emotion and don’t express it but instead hold it in, it causes a few of my chronic pain illnesses to act up. Then it turns into a cycle of holding in emotions and getting worse and worse.
That’s a big part of why I’ve been writing more lately. Getting out emotions and writing things to remind myself what to do has been really cathartic.
I’ve written a lot about dealing with my childhood recently. It’s being a really difficult process. Everyone acts like there’s no way dysfunction goes into abuse or that they’ve experienced it. There is no normal, but there is definitely a point where dysfunction is much more than that.
As a part of all this, it’s important for me to get emotions off my chest. I’ve written before about how healing music can be for me, so I’ve put together a playlist to handle those emotions when I’m at work or in situations where music is allowed but it may not be the time/place to deal with things otherwise.
I hope you enjoy the collection of angsty music with a little ‘I’m worth it’ music thrown in.
On another note, T came with me to therapy this past week. I made a lot of progress because of it… and cried a shit ton.
I’ve realized that I can’t build new relationships with family without dealing with the traumatic experiences that I’ve been through. They help me hold onto a lot of anger, which makes me hold back on sharing emotions or information.
I also really realized that, no matter what happens, I will always have T & Kelsey & those cute niblings.
I’m lucky to have amazing close friends and family that help all over the place, but y’all are icing on the cake.
What are some ways that you enjoy getting emotions out?