“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.

#HAWMC Day 14: A Case of the Mondays

Pain. We all feel it. It could be short lasting or seemingly never-ending. We get hurt, we cry, we heal.

My pain is constant. The throbbing sometimes has mercy and I feel “fine.” Other times, it’s relentless and merciless. This past week has been a week of the relentless kind of pain.

On my good days, I go to bed with a headache and wake up with one, but on my good days I am not bothered by it because the pain is so minimal that I’m able to wake up with a smile. On my bad days I go to sleep with a 7/10 headache and wake up with a 7/10 headache, or worse. I’ve been having more bad days than good, lately. It’s extremely frustrating. It’s more frustrating than people can imagine. It’s so frustrating that sometimes, it’s all I can think about. I can be with my friends, and I’m thinking about how my pain is never-ending. I can be in church, and I’m dozing off to think about how my pain won’t let up. It occupies all of my mind and energy.

It bums me out when I have to cancel plans because I feel crappy. It bums me out even when I didn’t even have plans, but I know that I’ll be staying in even if I wanted to make plans. It bums me out to know that I’m no where near as healthy as my peers and even so, no where near as healthy as I, my chronically ill self, have felt before.

bummed-dog

It can be hard to go to sleep and tell yourself to begin the next day with an open and optimistic mind, when every day feels like the same broken record playing over and over again.

Even though it’s hard though, I try my best every single day to remind myself to have a better mindset. I remind myself to attempt to shut off my feelings of “but tomorrow I’ll probably feel awful again,” and instead try to turn on my feelings of “but tomorrow, what if I feel even just a little bit better.”

 

HAWMC Day 10: Yahoo Has All The Answers

Yahoo Answers

Q: My head feels like it’s about to explode. The throbbing is so intense. Can someone’s head actually explode?

A: No. Your head cannot physically explode. It will feel like it at times–the throbbing feels intense enough that it feels like something will erupt from within your skull–but no, your head will not explode. It will be over soon.

ryan-gosling-headache-meme

 

HAWMC Day 9: My Ideal Day

I wake up around 10 A.M., knowing that I don’t have any schedule to follow. With my eyes opening, there’s no pounding or throbbing in my head–only a refreshed and bright feeling. Being just close enough to the beach to smell the salty air, I know that after a quick breakfast and yoga session that is completed with no exertional headaches presenting themselves, that I can walk down to the sand where it meets the water and just relax for a few hours.

There is no aching, no yawning, and no throbbing allowed on the beach. Only reflection, good music and tan lines. A couple of close friends and loved ones trickle down and lay their towels next to mine, bringing some much wanted company to my presence.

After a few solid hours down by the ocean, it’s time to find something to eat. Pizza sounds awesome. Pizza always sounds awesome, actually. I eat and my head is not affected. There’s no increase in head pain, just an increase in food coma. And what’s a great pizza dinner without a refreshing strawberry margarita to go with it? And again, no increase in head pain as the margarita leaves the glass.

My day wraps up with one of two options, a night out with my friends dancing the night away and adding more margaritas to my tally, or a solid game night full of competition and margaritas. (Am I being too subtle about my love for margaritas?)

margarita

The entire day, I have experienced a 0/10 head pain day. No headaches. No frustration. No symptoms. Nothing. I feel nothing–something I haven’t been able to say for the past few years. There’s always been some kind of head pain–never a zero. But today, today it is a zero.

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!

HAWMC Day 6: Superpowers Wanted

I’m never able to settle on just one answer when I’m asked “What superpower would I want?” But for today’s purposes, I chose flying.

Cliche? Yes. Practical? Yes. Awesome? Yes, yes and yes.

How would I use it? The real question: How wouldn’t I use it?

It’s crazy expensive to travel the world, or even travel through the country. It’s even more of a stressful decision when you have medical bill after medical bill rolling in, staring you in the eyes.

I dream about visiting different cities and countries, exploring the vast world around me. I hate knowing that I’ve seen so little of this world. But I have to force myself to be realistic and save my plane ticket money and use it to keep collections from hunting me down.

But if I could fly, well I could see the beauty around the world and still have money to pay off the inevitable debt that medical bills create.

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HAWMC Day 5: Favorite Platform for Getting My Voice Out

I love utilizing every one of the platforms that I use to get my voice out there. I love Instagram because I’ve found that I can reach a lot more people than through the other platforms I use. I also love Instagram because I’m able to show my hand-lettered quotes and what not. I also think that pictures are more initially captivating than just a bunch of words. It gives people a quick glance at what you’re all about.

While I love to use Instagram for building my brand, I have a different platform preference for actually getting my voice heard. That platform is blogging on WordPress. By writing on a blog, while my reach not be as wide as it is on Instagram, I am able to write in much more detail and really write in the voice I want to. I’m able to share more information–holding nothing back. I have received really great feedback from people who have visited my blog saying that what I’m writing is really resonating with them and that the way that I write is unique and beautiful. I don’t share that to sound boastful, I share it to explain why blogging is my favorite platform for getting my voice heard.

What’s yours?

social-media

Image from Skyscanner Business

Health Activist Writer’s Month Challenge: Day 2-How I Write

My writing style isn’t necessarily a style, exactly. I don’t follow one set pattern or stick to one particular habit. Most often, I get inspired and just start to type away. I let my brain and fingers do the work and I don’t stop until they’re done. When I’m in this inspired, must-write-right-now kind of mood, I just hit publish and send my words out into the vast internet universe.


However, sometimes I am a bit more calculated. Sometimes I read over every word, every punctuation mark, every sarcastic remark. Sometimes I plan out ahead of time what I want to write about and sometimes I work on a piece for a couple days.

More often than not though, I write on a whim. I write when a light bulb goes off in my head, or I write when my head pain is so bad that I have to write in that exact moment to pull myself together.

lightbulb.jpg

Whatever your writing style may be–whether it’s habitual or sporadic, you just keep doin you!

My Trial And Error Life: Trying Treatment After Treatment 

An experiment.

A never-ending process of trial and error.

A frustrating, tiresome and continuous cycle.

 

The above is how I describe my health journey, and sometimes how I describe my life in general, because my headaches have become my whole life over the past couple of years. My health journey and life journey have merged into one, really.

 

When people ask me if I’ve tried a specific medicine or not for my chronic daily headaches and migraines, it truly takes a lot of effort for me to not chuckle out loud in response. Not because what I think they’re asking is ridiculous. In fact, I appreciate others trying to help me find a solution. I  just can’t help but chuckle because all I want to say, and sometimes I actually do say outloud is, “Trust me I’ve tried them all.”  OTC’s, anti-seizures, antidepressants, blood pressure medicines, beta blockers, the whole shebang. I’ve been around the block when it comes to poppin prescriptions. (it’s not as rowdy as it sounds, I promise.) Pills were all my doctors could think of to push to me. “Oh topamax didn’t work? Try Nortriptyline.”

 

But, about six months ago, I got to the point where I couldn’t put my body through anymore torture. I couldn’t try another pill. But a doctor I’m seeing told me to give a new medicine a try. You see, even when pill after pill doesn’t seem to do anything for your pain, you start to get discouraged. Heavily discourage. But with the daily head pain I endure, my body and my mental strength can’t afford to be discouraged. No matter how pessimistic I may feel about a pill potentially me, I usually always give it a go, just in case this time it miraculously works.

 

Well, as luck would have it, the last pill (from the above scenario describe) I tried did not work and in fact gave me adverse reactions that my doctor had never witnessed before. Being told
“Oh really? That’s very interesting. I’ve never heard of any patients reporting those side effects before” isn’t really the uplifting news you hope to hear going into your appointments. I wanted to say “Oh really? No one else ever felt like their migraines tripled in intensity? No one else ever felt so dizzy that they thought maybe they accidentally somehow got drunk at work in the middle of the day? No one else reported feeling like I was a zombie, not being able to focus on anything at all? Well isn’t that dandy that I could be the first person to experience all of those things.” But I didn’t say those things, of course. Mostly because I respect and like my doctors too much and because I know it’s not fair of me to say such things.

 

Instead, I sulked. I hit a low. I pretty much told myself that there was no helping the pain I feel from when I wake to when I shut my eyes again at night. I told myself that I would just have to keep on truckin’ with no hope for any relief in the foreseeable future.

 

But then, the next time around,my doctor started suggesting some new treatment ideas that in fact were not revolved around me swallowing about four pills a day. These new treatments include: Physical therapy, atlas orthogonal, botox, etc.

 

As always, I was and still am skeptical about the proposed treatments and try not to set my hopes too high on the idea of the treatments helping me feel better.

 

It’s gravely exhausting on the body and the mind to spend years of your life trying medicine after medicine, treatment after treatment, and never seeing enough progress to turn my frown upside down. Thinking about how much I’ve put my body through physically, by trying every chemical under the sun just to get the pounding in my head to subside, is sickening. To try treatment after treatment, just to get nowhere is a process that I’ll never get used to, but probably also will never be able get rid of.

 

A smart person once said: “Insanity is doing the same thing over and over again and expecting different results.”

 

To keep my sanity, I have to try every new thing that my doctors and I can think of, because it’s not healthy to continue doing the same thing repetitively if it’s not producing any new and different results.

 

The irony, however, comes into play when the reality hits that actually, doing new and different things over and over again and never seeing different results is actually what causes the sanity to slip away from you.

 

But that’s when you have to force your fortitude, perseverance, strength and dreams of one day feeling better to overcome all of the discouragement and feelings of creeping insanity that you may be feeling.

 

I must keep trying new methods. I have to give new treatments a chance.
People throughout history have found amazing things through the process of trial and error, why does it have to be any different for me?

 

(Read my post on The Mighty Site here)

 

Things I’m Good At, Thanks To My Chronic Headaches & Narcolepsy

 

I’m really good at:

  1. Sleeping. My spirit animal is sloth.
  2. Making plans and then backing out last minute. Just because I hate doing it, doesn’t change the fact that I’m awesome at it.
  3. Collecting. I collect prescriptions, vitamins, test results, and doctor business cards
  4. Talking. About anything–doesn’t have to be health related. I’m just really good at talking.
  5. Showing compassion. Having endured years of chronic pain, health issues, emotional roller coaster rides, mental hardships and more, I find it really easy to feel compassion for other people and their journeys and struggles. I also just really like seeing people smile, so that’s more motivation.
  6. Surprising people. With my unexpected knowledge of various medicines, methods, symptoms and diagnoses. I promise I won’t walk in and pretend to be your doctor though.
  7. Enjoying time by myself. Because of how often I have to cancel plans or stay in and rest, I’ve learned how to truly enjoy and appreciate my own company. It actually kinda confuses me when people say they don’t like spending time alone. Like–I think I’m super cool, why wouldn’t I want to hangout with me?
  8. Picking myself up after a fall. More often than not, I’m the only one who can get myself up again after I’ve taken a hard fall in my health journey. Everyone will fall down in life, but we only truly live when we’re getting back up again.
  9. Managing pain. I don’t like to toot my own horn, but I’m pretty damn impressed by myself and my strength. I have continued so many activities while enduring my worst-pain level headaches/migraines and I never know how I did it once it’s over.
  10. Really enjoying life in all of it’s beauty. Life will never be full of only sunshine. There will be storms and we will get rained on. But each time the sun comes out, my smile gets brighter and my love for this world gets greater. Enjoying the simple things in life, putting more of my time toward seeing people who lift me up and doing more of what sets my soul on fire are all things I have seen myself get better at doing.