Q:Do you have any new study tips lately? I'm struggling with keeping up and my chronic pain and your posts have been a life saver for me
Sorry to hear you’re struggling—I know how hard it is. If you want to email/message me off anon and tell me the kind of material you’re studying, this might be more helpful.
But I will say that more than any other study “tip,” time management has become my bff this semester. I have to plan for flares, meaning I have to get ahead of my disease when I’m feeling good and would rather spend my ‘feeling good’ time doing something other than studying. Even if it’s just an hour, spend some time on your better days getting a half step ahead.
The other thing that helped me was making a commitment to a study group. If I commit to them to read a chapter or learn a concept by a certain date, I am less likely to put off doing that work when in pain. I know this doesn’t solve the pain issue—I get that—but sometimes it’s easier to focus on the bigger picture when you have a group of people supporting each other. So consider creating a study group and meet with them often.
- Important: find a group where you feel comfortable teaching each other. If you can teach someone, you understand the material. And that’s a great way to help each other learn if you are behind or struggling.
Schedule a day or period of time where you do nothing school-related. For me, that’s Friday nights. I do not study or do anything school-related on Friday nights. Period. I wine down (see what I did there?), take a bath, relax with friends, binge watch Netflix, catch my drift? Do something that relaxes you.
Get a planner. If you’re not someone that uses a planner, use one until it becomes a habit (this takes time) or find a method that works for you. Prioritize what needs to be done.
Break tasks down into tiny digestible pieces. The smaller the task, the easier it will be to tackle when you’re feeling overwhelmed. Do your best to take care of yourself. Eat breakfast. Sleep at least 5 hours, stay hydrated, find a great study playlist, and take some deep breaths. I know it’s hard and yeah, you know what? There are going to be weeks when you’re running on no sleep, not eating well, and you’re cramming (or not, in which case you need to teach me your ways). So just do the best you can.
I believe in you :)
There are more study suggestions here if you’re interested.
Q:Are you scared of making mid/long-term plans?
Oh jeez. Talk about a loaded question.
Scared? Yes. Apprehensive? Terrified? Anxious? Yep. Especially when my long-term plans involve making financial commitments or commitments to other people.
But I’m getting to the point where I’m learning not to let my fears and anxieties related to my diseases hold me back. I’ve slowly started taking bigger steps outside of the box that these diseases and chronic pain have put me in. Every step is a little easier to take. And sometimes the steps aren’t easier. Sometimes I just take them anyway. Going into medicine is one of those long-term plans that has me petrified. Here I am, taking the steps anyway.
It took me running myself into the ground socially, emotionally, mentally, and physically to realize that even if I sign on for some serious commitment (e.g., grad school) and have to bail—it will not be the end of the world. I have faith in myself that I’ll find my way, even if it’s the hardest thing I have to do. Even if I’m homeless or hospitalized. I’m learning how to have that faith in myself and my ability to persevere. That’s kind of awesome and terrifying all in the same breath.
When I think about making long term plans in the context of a progressive disease and very limited treatment options? Yeah, it terrifies me. And to be really honest, if I sit and think about whether or not I can handle grad school or marriage or whatever ginormous plans I may want to make in the next decade, I panic a little bit. I know Kineret is slowly becoming ineffective. I know there are only so many treatment options. I know they’ve recommended looking into a stem cell transplant. Those fears are all possibilities. And it’ll be what it’ll be. They’ll either happen or they won’t and they will do so regardless of any plans I make or do not make. So instead I focus my energy on the here and now. Life will pass me by—the same number of days will come and go—whether or not I make plans and live the life I want to live to the best of my abilities.
That doesn’t mean it’s easy (newsflash: it’s not easy), simple, affordable, D all of the above. But eventually you just reach a point where you have to say fuck this, I’m going to try and rebuild a new life for myself. That’s the point I’m at right now. I am doing my best to channel all of my fear into those little baby steps forward.
I hope this was coherent. It’s a long process that doesn’t ever really end; we go through this in stages. And you know what? It’s okay to be petrified to make plans in the face of a chronic disease. It’s normal. My email inbox is always open if you want to talk more.
Here’s our live hangout from last night on patient self care and burn out. I talked a lot about my own story with struggling with/learning how to let people in, letting people care, and how I started learning to ask for help. We also talked about The Spoon Theory/Spooniechat, anxiety, and how to break down tasks into tiny challenges that are easier to overcome when you’ve got chronic pain, and much more.
Let me know what you guys think!
Live With Lidoderm: Chronic Pain DGAF About Your Plans
It’s amusing to me that I’m going to do a live hangout in 3 hours about burn out, compassion, and self care, and I’m in so much pain that I can barely get myself up off the couch—feeling totally blue and burnt out. I was just texting one of the other panelists, and it dawned on me—I need this panel just as much as anyone else watching. Self care is a process. You have to learn and practice self care. It’s an art form. Mastery takes years—maybe even a lifetime.
I may be doing this live hangout with lidoderm on my face, seriously. Chronic illness/chronic pain doesn’t care what plans you’ve made or what appearances you have to make. You guys know that better than anyone.
I hope you’ll all watch tonight. We’ll be talking about how easy it is to get burned out when you’re a ‘professional patient’—from both a treatment standpoint and an advocacy standpoint—and why self care is critical for both patients and providers (medblr community, I’m looking at you). I’ll be sharing a little bit of my own self care story as well.
"We" being a diverse panel—from chronic pain patients to cancer patients. We’ll also have Dr. Becker Schutte, a licensed psychologist who works with chronic illness patients. This is a must-watch panel if you’re struggling with compassion fatigue, depression, anxiety, burn out, self care—you name it.
We’ll be taking questions live, so watch and send in your q’s—we’ll answer them!
The live video stream will automatically post to Stanford’s MedX Live page at 8:30 pm EST. ’See’ you all tonight :)
Stanford Medicine X Live: Self-Care and Burnout
I’ll be on Medicine X Live tomorrow at 8:30 PM EST talking with other ePatients and providers about what it was like to maintain self-care at a large medical conference. We’ll also be discussing compassion fatigue and burnout for both ePatient advocates/bloggers and providers. Tune in and follow along on twitter with our live chat using the hashtag #MedX. We will be taking live questions from twitter, so feel free to tweet us with any Q’s you might have.
Follow our tweetchat moderator, Nick Dawson @nickdawson for details, links, and to send in any questions during the chat. An easy way to follow the live chat is to use tchat.io, type in #MedX into the search bar, and watch :)
I will post the live stream link tomorrow before we go live!
Chronic Illness Problems 01/11/14: The Human Barometer!
- Knowing what the weather is going to be like before you even get out of bed in the morning
- Who needs the weather channel when you have arthritic joints or an autoimmune disease?!
Make sure to place your Cure Rheumatoid Arthritis bracelet orders before December 17th in order to have them in time for Christmas!
If you’re looking for a simple way to spread some awareness and give back this holiday season, considering buying a Cure Rheumatoid Arthritis awareness bracelet. $5 each and proceeds are being donated to the Arthritis National Research Foundation in January 2014! Choose from two different styles.
Make sure to place your order before December 17, 2013, in order to receive your order in time for Christmas.
- To learn more about why we support the ANRF, about the bracelets, and to order yours: head to the Chronic Curve webstore.
- Questions/comments/feedback? Email us: email@example.com
Brace Yourselves, It’s Final Exam Time: Flare Edition!
Can you believe it’s that time already? I swear this semester was the fastest yet.
Final exams suck for most (is it safe to say all?) students, but this time of year is especially brutal when you’re dealing with a chronic disease and/or chronic pain. On the plus side, I updated my Final Exam Help post!
So you’re flaring and tackling finals? Here’s what you need:
- Excessive amounts of caffeine and Tylenol
- A positive attitude or at the very least, a good sense of humor
- My updated Final Exam Help post
- The rest of my studying with brain fog-related posts
That said, I will be on Twitter commiserating with other chronically ill students and likely Instagram whining about a stats final that is worth 35% of my grade, but will not be blogging aside from the occasional checking-in post. Feel free to join me and the rest of the students on Twitter—we’d love to support you, too.
Good luck! Keep calm, carry on, and may the odds be ever in your favor.
The Balancing Act of ePatient Advocacy and Self Care
I’ve started having new symptoms…and old symptoms that haven’t come around in quite some time. Yesterday I felt a pop and then what I can only describe as an explosion of glass in both my knees. It very seriously felt like a glass dish had exploded within my leg. I have had mini-explosions from that point on. Every muscle fiber is on fire. My glands are swollen and GI symptoms are lurking. Fatigue is worse than normal.
Whine, whine, whine. I know that I have been both slacking on finding a new medical team and slacking on the self care. I also know that my disease tends to flare harder during mid-Fall.
There are days where this pain will swallow you up whole. It’s only 9am, but I know today is one of those days for me.
Last night was the first time in a long time that I felt both completely defeated and overwhelmed by my disease.
Overwhelmed because Autumn always seems to hit the Autoimmune Arthritis community the hardest.
Overwhelmed by the number/content of messages in my inbox (though I love hearing from you). Overwhelmed by the now 29,461 people subscribed to this blog just through Tumblr alone (which is humbling and amazing for me, but that’s also a lot of eyes). Fellow MedX ePatient/Podcast extraordinaire/Diabetes advocate Chris Snider recently shared similar thoughts on his blog re: managing advocacy and self care:
For the ePatients living with chronic pain, for example, there are never enough spoons in the day to carry out a list of ordinary tasks but if you factor in the weight of an entire community that sees you as a leader (and maybe even role model) the pressure can get quite overwhelming.
Typically, this is my sign to take a little break: disconnect from Tumblr, Twitter, the community, and just care for myself.
I compromise and undermine my own advocacy work, what it means to be an ePatient, if I compromise on my own self care.
So that said, it’s time for a time-out, probably right after World Arthritis Day? I really have no idea, but if I lay low for a while and don’t respond to messages, please understand.
See you soon and take care of yourselves when you need to,