“How To Live Well With Chronic Pain and Illness” Chapter 7 Summary: “Dealing with Tough Choice after Tough Choice”

When you live with chronic illness or pain, you find yourself constantly trying to manage your health as our relationships with others as skillfully and as well as we can. Based  on our evaluations of how we are managing both of those parts of our lives, we have to make choices that will most be the most beneficial. This leads to tough choice after tough choice. Do we keep the plans we made or listen to your body and stay home? Do we let down our friends or our bodies?

Start where you are. Use what you have. Do what you can.

-Arthur Ashe

 

In this chapter, the author writes out some tough choices/questions that we have probably all found ourselves facing at some point during our lives with chronic illness/pain. See below:

  • “Do we talk openly about our health problems, or do we keep them private?”
    • This is a choice I find myself facing nearly every day. When I interact with strangers or with people whom I know I won’t be seeing often, I find myself wondering if I should even bother trying to explain my symptoms and health conditions. Sometimes I feel like I have to explain myself or the person/people I’m talking to will think I’m weird, or lazy, or boring, etc. But then other times, I feel like I shouldn’t have to explain to someone who may just be a temporary character in my story. The best thing we can do for ourselves in this dilemma, is read the situation and circumstance and do what we feel will be the most beneficial and compassionate for us–not for anyone else.
  • “Do we follow our doctor’s treatment plan, or do we try alternate therapies?”
    • This question frequents my mind much more often than I would like it to. So often I find myself going back and forth on whether I want to try a new treatment that my doctor has suggested. For years, none of the medicines I was being told to take worked. None of them. Countless pills and nothing to show for it. So I am skeptical. However, there are some treatments that my doctors have suggested that have proved to be beneficial and have provided me with even the littlest relief (any relief is a win). So I am hopeful.
  • “Do we ignore a new or worsening symptom, or do we have it checked out by a doctor?”
    • I can not tell you how often I have asked myself this question. You can ask my family members and my boyfriend–they won’t be able to remember either because it’s a substantial number that keeps growing. I find myself so much more in tune with my body than most people. While this can be beneficial, it can be extremely tormenting. It is exhausting to waste so much emotional efforts focusing on every single ache, twinge, or pain that is felt in our bodies. Trust me–I do it every day. However, no one knows your body as well as you do. There have been times that I have gone to the ER over a symptom that ended up being nothing to worry about. However, there have also been times where I have brought up symptoms to doctors and it has helped get me steps closer to treatments that actually work for my body. All you can do, is listen to your body as carefully as you can. You are the expert on your body. You know it best.
  • “Do we use makeup and the like to cover up how sick we are or how much pain we’re in, or do we let people see how we really feel?”
    • This is a question that I often answer too quickly–and most of the time, my answer is to hide how much pain I am really feeling. The author said something in this paragraph that stuck with me real hard. She said “Health people tend to assume it’s all or nothing: people are either sick or they’re not; they’re either in pain or they’re not. As a result, if they see us doing anything ‘normal,’ they assume we’re 100% well.” I mean this is an every single day occurrence for me. I’ve lived through thousands of interactions where someone has said to me “oh you have a headache today? I’m so sorry.” Well…I actually have a headache every single day, it’s just some days they are worse and more painful than other days. It’s not their fault, I know. But it’s extremely difficult to always remind people of my constant pain. So, most days, I just hide how I’m feeling. People are not deliberately insensitive to our pain though. They just simply don’t know.

The author ends this chapter by talking about how physically and mentally exhausting it is for us to have to  continually “assess, evaluate, and choose a course of action while already struggling with chronic illness.” and she couldn’t be more accurate. Pay attention to your body and you will find the answers to your choices come much more easily.

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

#HAWMC Day 4:Wishing For A Concrete Diagnosis.

This isn’t the answer you were hoping for or expecting. Well, the lack of answer, actually. You were hoping to hear a clear cut diagnosis so that you could then begin whatever treatment was available. But it’s not that simple. It won’t be that simple. Instead words like “new daily persistent headache,” “chronic daily headache,” and “chronic migraine” will be thrown at you. They’re all very similar but very different.

It’s going to be hard to find treatments that work for you. Your life will become to feel like a science experiment. But trust me, you need to keep on going. Give different treatments a chance so you can figure out what really will not work for you and your body and you can also discover things that can help you, even if it helps just a little bit.

It’s going to be an up and down roller coaster. You won’t be able to predict or control when the curves are coming or how shaky it’s going to get. What you can do, though, is control, is how you react to those curves and shakes.

Stay strong. Stay resilient. Your mental strength will waiver, your physical strength will at times feel imaginary, but you have the highest pain tolerance of anyone I know.

Even though you won’t be getting a concrete diagnosis, just remember, that you are taking steps forward in this journey of ours.

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!

Health Activist Writers Month Challenge: Day 1-Why I Write

I didn’t plan on sharing my story with the the world. Not until I was encouraged to do so by a loved one who saw me struggle with my health and the consequences of my health problems every day. Before I started writing, I never really believed that there were other people out there who lived with chronic daily headaches like I do. I had never met or talked to anyone who lived with anything close to what I live with. I live with chronic daily headaches and migraines. For me, this means that I have a headache 24/7. It sounds like an exaggeration, but I promise you that it’s not. I have some type of headache all of the time. While the intensity varies and changes frequently and without warning, the frequency is the same: it’s always there. It has made me change my way of living, from an active young adult always looking for adventure, to a wishful young adult who lives a rather stagnant lifestyle yearning for more adventure and more answers.

I started writing because I needed a coping mechanism. I had to find some way to release all of the frustration that had been building up over time, weighing me down. It has helped me more than I ever expected. When I find myself feeling very low, I turn to my writing. It helps pull me out of the darkness. As I found myself climbing out of the darkness, I realized that maybe I could help pull others out their darkness as well. I realized that while I was helping myself cope through my writing, I could also help others like me who really needed a hand to help them up.

I write to help people feel supported. To help them feel less alone. To help them remember how strong and brave they are.

brave

Hope For Progress, Rather Than Fear The Disappointment 

I have gone through months where I’ve effectively given up, only to give myself a wide wake up call that I needed to pick myself out of my funk and continue to try to find an effective treatment. No matter how walls I ran into and how many failed attempts there were, I had to keep trying.
I hope that you keep fighting to find an effective treatment. Or if you’re in a funk and you’ve lost hope, that you find the strength to try again. Because hope is the only thing stronger than fear. Hope that there is a treatment out there, rather than the fear of never finding an answer.

Vote For The Headache Heroine in the 5th Annual Health Activist Awards!

I’ve been nominated for three award categories for the 5th Annual WEGO Health Activist Awards this year! The categories I’ve been nominated for are below:

  • Best in Show: Instagram
  • Best in Show: Pinterest
  • Rookie of the Year

Please take a quick minute or two to vote for me on my nominee profile!

I truly appreciate all of the support and am very humbled and excited to even be thought of for these awards! It’s extremely touching and motivating to know that I’ve at least reached and helped one other person over the past year through The Headache Heroine.

Thank you in advance ❤

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)

 

Any Insight on Lexapro?

Anyone have any experience taking lexapro? Either for anxiety or for headaches?

My PA at my neurologist office has suggested for the third time that I start it for my headaches but also for my mild anxiety.

She thought it might help my chronic daily headaches as well as the anxiety that comes along with having a chronic disorder for 10 years. 

Started lexapro a couple of days ago and my headaches have been horrible and been feeling like I’m in a total daze. Couldn’t focus all day, dizzy and just weird.

But as someone with headache spells coming as frequently as Santa comes on Christmas, it’s hard to tell if it’s the side effects of a medicine giving me terrible headaches or if it’s just my body being my body. 

Any info or advice is appreciated!