“How To Live Well With Chronic Pain and Illness” Chapter 5 Summary: “When the ‘Want Monster’ Whispers in Your Ear

This chapter of the book “How to Live Well With Chronic Pain and Illness” is all about how sometimes we want something so badly that we let our happiness depend on it. For us “spoonies,” most of our wants are health related wants. Wanting a pain free day, wanting a cure, wanting to be able to be physically active, etc. The author describes the feeling of wanting something so badly that our happiness depends on it as the “Want Monster.”

When the “Want Monster” comes around, we convince ourselves that we will truly be happy once we get the thing we are so badly yearning for. For me, I often hear the “Want Monster” telling me that if I could back in time to when my chronic daily headaches weren’t a thing, then I would be happy again. That if I was healthy like my peers, then I would be fully happy. Here’s the problem with that outlook, though: I would still have my share of problems whether I’m healthy or not. Everyone has problems. Not everyone has health related problems, but everyone has them.

True happiness emerges from the acceptance that not everything in life will go our way. Happiness comes from us finding peace with the hand that we’ve been dealt.

I know that I would be happier in most situations if my chronic daily headaches and migraines disappeared forever, there’s no doubt about that. But, I know that I have found some truly great and happy times due to my health conditions. I’ve found amazing people and opportunities and have learned a lot about myself.

When the “Want Monster” tries to enter your life, push it away. Find peace with your life as it is currently, and then you will find a pure happiness.

“How To Live Well With Chronic Pain And Illness” Chapter 2: A Not-T0-Do List for the Chronically Ill

I am a huge list makers. If you looked on my phone right now, you’d probably be overwhelmed and confused by the number of lists I have saved. Some of which are extremely random and I don’t remember making.

Living with a chronic illness, I have a mental to-do list running at all times to help me steer clear of increasing the severity of my pain. But this whole chapter in “How to Live Well With Chronic Pain and Illness” is about making a not-to-do list. Here are a few:

  • Do not spend your energy worrying about how others view your medical condition
    • this is one I struggle with constantly. I am always worrying about if people think I’m faking it, or exaggerating my pain. I worry if they think I’m just lazy because I turn down opportunities to go hiking, when really, it would make my head near explode. I worry that people will think I’m no fun because often I have to turn down happy hour invitations because alcohol causes my head to scream. I also always worry that when people see me dancing around and laughing, that they will think I’m “better” and that I don’t have a headache. When in reality, I always have a headache, I just often put my personal enjoyment ahead of them and often put up a front that I’m ok. Just like any other thing in life, we cannot put our focus on how others view us or think of us. What matters is what we know to be true and how we see ourselves.
  • “Do not treat disheartening or discouraging thoughts or emotions as permanent fixtures in your mind”
    • so often I hit dark days when I worry about my life in the future and that I will be feeling sick every day for the rest of my life.These days often entail gloominess and the blues. It’s normal to have these types of discouraging thoughts, especially on days when our pain is at its worst. Do not condemn yourself for these thoughts. These thoughts are not permanent. The blues shall pass and the light will shine through again.
  • “Do not ignore your body’s pleas to say no to an activity”
    • It’s extremely hard to turn down offers to activities that we know will make us feel like the healthier people around us. I remember countless times where I have accepted offers and pushed my body just because I didn’t want FOMO. But, each time without fail, my body ended up paying for it later on. In the moment, it’s easy to forget about the pain. Sometimes, I even forget that my headaches are there due to my excitement or adrenaline. But once I stop moving, trust me, they remind me that they’re still there. The pounding in my head is usually so bad I almost (and likely do) cry. Don’t push your body past its limits. Sometimes on special occasions, if we feel comfortable knowing we will most likely pay for it later, it’s ok to say yes when we know we shouldn’t. But overall, it’s important to stay mindful to what your body is telling you.
  • “Do not put your pre-illness life on a pedestal”
    • this one stuck out to me the most. Almost every day I think to myself “I just wish I could feel like I did x  years ago when my headaches were not a constant.” I daydream about the days where I was exercising daily, partying like a normal young adult sometimes does, and just living life without worrying about setting a reminder for my 3 doctor appointments for the next week. But the thing is, life is always changing. What once brought us joy may not bring us the same kind of joy any longer. Take a look at where you are now, what you’ve accomplished and who you have around you. Ask yourself, did you have these things in your pre-illness life? Most likely, you got to where you are today because of what you went through in the past. And I bet all of you have some really great accomplishments to be proud of and a lot of people who are there for you day in and day out. Put that life on a pedestal.

If you’re like me, than you are your own biggest critic. People like us have a tendency to be hard on ourselves and have a very tough time letting things from the past go.

3633501291_d71bb624a5_z

 

Let’s make a promise to ourselves to focus on the good that we have in our lives now, instead of fretting over what we’ve lost from the past.

 

 

“How To Live Well With Chronic Pain & Illness” Educating Family & Friends On Your Condition/Illness

I’ve had a difficult time finding people and words out in the world who understand (or at least nearly understand) what I feel from day to day as someone who lives with a chronic invisible illness. I often scroll through blogs written by people with their own chronic illnesses and one day I came across a blog that talked about this book called “How To Live Well With Chronic Pain And Illness” by Toni Bernhard. The author of this blog wrote something about how this book has helped her cope and become more mindful in during her day to day life with a chronic illness. I decided to check it out. I bought a copy on Amazon and immediately dove in. Each page has something that strikes a chord with me. Each chapter provides new insight as well as much needed comfort and understanding. While the author of this book doesn’t live with the exact same illness that I do, she is able to connect with me so well because the emotions and situations that we face are nearly identical.

Each week, I will summarize a different chapter and provide the tips/advice/insight that I found most helpful. I hope you find this helpful, and then maybe even go purchase this book for yourself!

how-to-live-well

Chapter 1: Educating Family and Friends about Chronic Pain and Illness

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” – Alan Watts

It may take a while, longer than we want, for family and friends to adapt and adjust to our lives with chronic illness. I know from experience that the people who love you will try their damnedest to understand everything that you are feeling and going through. Of course, that’s not possible, since they aren’t going through it themselves. However, the effort is all that matters. It can bring about frustration for us when we feel like our loved ones really just don’t get it–but instead of getting frustrated with the ones who care for us, instead we should try to educate them on what exactly we are going through, to help them better understand and in turn better love and care for us how we need to be loved and cared for.

  • Share information from the internet or other sources
    • A quick Google search can bring about a number of organizations and associations that are devoted to your condition/illness and others like them. You could print a few pages, send links through emails, or just read through them with family and friends. You can let these people know that it’s important to you that they go through the information–don’t treat it like a test though–keep it lighthearted!
  • Communicate in writing
    • This is always effective for me–mostly because I cry every time I talk about something that is either very important to me or about something that has affected my life heavily. Actually, I just cry when I talk about a lot of things–I’m just a sensitive person and proud of it! So for me, I feel like it’s a lot easier to get out everything I want to share with someone through writing (clearly, since I have this blog.) When you write a letter or note to someone, make sure to use “I” more than you use “you.” You could start by describing your day to day life with a chronic illness, explain to them how you have had to adjust your life because of it and just let them know how you truly wish you could be as active as you once were–because sometimes it’s hard for outsiders to understand that we just can’t do the things we once were able to. Toni made a good point in this chapter–she said you could write to them about how the way you will “feel on any given day is unpredictable.” This is so completely true for me, and I find myself reminding my friends and family of this as often as I can.
  • Work on accepting that some people you’re close to may never treat you the way you’d like them to
    • This is something I still struggle with, but I’ve become much more comfortable with over the years. Some people may not show an interest because they think that if we want to talk about it, we will bring it up. For me, I think this rings very true for a lot of the people in my life (just assuming) and I’m ok with that. It’s nothing wrong that they’re doing or feeling. One really important note that Toni says in this chapter regarding this point is: “Understanding that others have their own ‘demons’ can lead to compassion arising for them, even though they’re letting you down. Compassion for others tends to ease your own emotional pain because it takes you out of your self-focused thinking.” We need to understand that everyone has something. We can’t take it personally when they may not always remember to ask us about ours.

I have an amazing support system built of family and friends that I hold near and dear to my heart. They all are understanding and accepting of me, no matter how I’m feeling or how my health changes. There are some people who I have accepted may never be as understanding as the next, but all that matters is that I have a solid group of people who love me and accept me whether I’m having a 1/10 or 10/10 pain day.

Next up will be: “Letting Go: A Not-To-Do List for the Chronically Ill”

HAWMC Day 7: Starting My Advocacy Journey

We all need people in our lives who push us to do and be greater. Sometimes it’s hard to accept advice that someone has to offer, but most of the time, it’s worth it to hear them out.

I never even thought about sharing my story about living with chronic daily headaches, because I never thought anyone would really need or want to hear and read about it. The thought never crossed my mind.

That was until one day, during a pretty dark and frustrating period of my life when I was experiencing 6+/10 head pain every single day for a long string of time. I was living with my older sister at the time, so she knew and could see that I was living in constant pain and that I was having a difficult time dealing with it. One day she suggested an idea that turned out to be my motivation behind creating The Headache Heroine. She said “Why don’t you write about all of this?” She suggested I use it as a coping mechanism, since I already had a love for writing. Why not take my love for writing and do something positive with it? She helped me realize that it could be therapeutic for me, which turned about to be very true.

At first, I was worried that sharing my story would just make me sound like I was throwing myself a pity party and was inviting people to bring gifts of sympathy. But that’s not what I was going for and that’s not the kind of vibe I wanted to throw out into the world.

What actually ended up happening, was that I got an outpouring of encouragement and praise for being “brave” for being vulnerable enough to start opening up about my health and really putting it all out there. I had been hesitant to share my blog posts on platforms like Facebook and Instagram, because I didn’t want to bug people and add things to their newsfeed that they didn’t want to look at/read. But then I realized, that if people wanted to skip over what I shared, they would, and if people wanted to read what I wrote, then they would. I eventually created a separate Instagram account for my health journey, but I still tried to tell myself not to worry about what others thought.

After a few months of being worried that people would judge or roll their eyes at the stories I was posting and sharing, I slowly grew much more comfortable with sharing my story. I realized that I was actually reaching people who really appreciated and benefited from my words. I became less concerned with those people who didn’t care about my story, and focused all my attention on the people who did care and who actually benefited from hearing my story and my advice.

While advocating and getting my voice out there actually helps me cope and feel more positive about myself and my life with chronic daily headaches, I also know that I have helped other people who are facing similar health journeys. That fact alone keeps me writing and sharing, and it should help encourage you to do the same!

Thursday’s Tips & Tricks: Podcasts & How to Create Our Own Positive Reality

While I’m a huge advocate of music being able to heal the soul and effectively pull at our heart strings, I’ve recently become a huge fan of podcasts (I know, I’m behind, but no one arrives to the party on time, right?)

So here’s my tip&trick for this week:
Listen to podcasts, and start with this one!

I’ve started listening to podcasts to and from work in the car and today I listened to this one on the way home “What Reality Are You Creating For Yourself?” by Isaac Lidsky. It’s about how we let our fears and anxieties create realities for ourselves, and how to avoid that. So often, we let our unexpected and unfortunate circumstances decide our fate. By doing that, we are creating a doomed reality for ourselves. But the fact is–that reality that we create does not have to be our reality. In this Ted Talk, Isaac “challenges us to let go of excuses, assumptions and fears, and accept the awesome responsibility of being the creators of our own reality.”

Isaac explains this way better than I do. Give it a listen!

After you give this one a listen, browse around and find a different podcast that helps lift your spirits, inspire you, and teach you new things!

 

 

This Is What Invisible Illness Looks Like

As invisible illness awareness week wrapped up yesterday, I think it’s important for people to see who we are advocating for. The real faces of the people who aren’t invisible even though their illnesses are.


I’m what someone with an invisible illness looks like. There’s nothing visible that shouts for attention, yet for me there’s a constant invisible pain inside my head. I have become a master of disguise, hiding my rollercoaster of symptoms behind blue eyes & soft, sometimes strategic, smiles. 

Whatever illness you are facing, I hope I can remind you that you are not alone. There’s always somewhere you can turn and someone you can talk to when you feel like you’re losing your fight. 💓

But for my invisible illness soldiers, remind yourself every day that just because your illness is invisible, it does not mean that you are. We have a tendency to put on a front for others when we don’t feel well, but we don’t have to do that all of the time. It’s ok to frown instead of smile sometimes. It’s ok to cry when you’re hurting instead of putting on your suit of armor to protect yourself. 

You are not alone nor invisible. Keep your head up and your heart strong 💛

Etsy Shop Listings! 

Hey all! Happy Tuesday! 

Taking my own advice and trying to tackle my Tuesday by getting out there and promoting my Etsy shop.


I take the visual posts I doodle that I post here and on my Instagram (@theheadacheheroine) and bring them to life in 3-D and then sell them on my etsy shop. 

They are pieces to inspire, motivate, remind you of daily love, and are made to encourage.

Check out my etsy shop here!! 😊

The Lotus Flower

It wasn’t planted in a bed of full soil among other lucky seeds. It wasn’t given what others were blessed with. It was born an underdog.

I was not built to live in a fully healthy body like so many others around me. I was handed cards that others have been blessed not to have received. I was born an underdog.

It grows within muddied waters and it has to push its way out to get some light in its life.

I continue to grow despite each new obstacle that life throws my way. I push my body to whatever helps it feel healthier.

It reaches the light, blossoms and thrives despite its unfavorable beginnings. It is a Cinderella story.

I push myself further and harder each day so that I, too, can blossom. So that I may reach my sun and come out on top, despite the unfavorable circumstances I’ve been given. Despite the never ending headaches and the on-going speed bumps in my journey to find treatments that help. Despite the wear and tear that my heart, mind and body have undergrone throughout it all.

I will become the Cinderella story.


 

 

Love Actually Is All Around Us

Sometimes I find myself feeling sad thinking about the friends I’ve grown apart from and the people who are no longer a part of my story. Sometimes I start to blame my health for limiting how social I have been able to be recently. Sometimes, I convince myself that because of my headaches and how unpredictable my health is, that people don’t enjoy being around me as much as they used to. It’s a humbling, frustrating, and sad feeling. 
It’s much easier said than done, but in these times, I try to force myself to open my eyes to the tremendous amount of love I feel and receive from people around me every day. I have a few very close friends and a big loving, supporting family, and a significant other who would move mountains for me if he could. I realize how lucky I am to have consistent unconditional love from such wonderful people. Which is a humbling, beautiful, warm and joyous feeling. 
In order to see the beauty and love that is all around us, we must first open our eyes and be willing to see it. Don’t ignore the goodness that surrounds you 💕
And on that note ☝🏼️I hope that your weekend is full of heaps of love 😊🌷💛

Thursday’s Tips & Tricks: Simple Is Good 🌷

Keep it simple, spoonies. 

We push ourselves endlessly to do so many things we want to, we feel obligated to, or we wish we could do. We’re constantly moving during the day between work, doctor appointments, social outings, and somehow managing alone time. 

We can’t do everything in a day. I’ve accepted the fact that complicated is harmful to my health and profess, and that simple is good.