How To Live Well With Chronic Pain and Illness-Chapter 4 Summary: Developing the Confidence to Say No

“To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.”

-Ralph Waldo Emerson

This chapter is all about learning the skill to say no and learning how to be ok with it. Below are a few highlights from this chapter that I have found very insightful and helpful–as someone who has a very hard time saying no, even when my body is screaming at me to do so. When you find yourself in a position where you can’t decide how you should respond to a situation, run through the following test:

  • “Would saying no as opposed to yes be true to yourself?”
    • Are you saying yes because you truly want to or are you saying yes just to give into the social pressure?
    • For me, I live a lot of my life worrying about making others happy. Yes, selflessness is a good quality to have. However, we need to learn that it’s OK to say no even if you’re worried that other people won’t be happy with your answer. You will learn that there are people who truly understand, and they will never judge you or be upset with you for choosing to listen to your body’s needs and saying no when you feel you need to.
  • “Would saying no as opposed to yes be kind and helpful to yourself?”
    • the author here associates “helpful” to whatever would benefit our emotional and mental well-being and associates “kindness” to our bodies.
    • Basically, what may be helpful to our minds may not be helpful to our bodies. For example for me, exercise can be helpful to my mind but is never helpful or  kind to my body.
    • Another good example of this for me at least, is all of the nights that I’ve gone out with my friends even when my head has been pounding and throbbing. I was so set on helping myself feel less isolated, so I would force myself to go out just so I could see my friends and help my mental well being. Because, if I stayed in, there would most likely be tears of frustration and FOMO rolling down my face. But instead, I pushed myself to power through the pain so that I could not feel like such an outsider, even just for the night. While there are times where this worked in my favor, majority of the time, it always ended up biting me in the butt and taking a huge toll on my head.

We need to practice saying no so that we can find what feels best for our body and our mind. We don’t have to separate the two. We can find balance and we can find ways for both our minds and our bodies to be happy with us.

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“How To Live Well With Chronic Pain & Illness” Chapter 3 Summary: Asking For Help Can Be Your Gift To Others

“No one has ever become poor by giving”

-Anne Frank

This chapter discusses something I, personally, have always struggled with–asking others for help.

Too often I feel like a burden on other people when my headaches are especially bad. I don’t want to be an even bigger burden by asking for favors and assistance.

What we need to learn, as people with medical conditions, is that we cannot get through this journey of ours alone. We need assistance every once in a while and we have to learn that it’s OK to ask for help.

Toni Bernhard outlines a few steps that you can take in order to teach yourself how to ask for help and being ok with it at the same time:

  1. “Make a list of what you need help with.” For me, this is often tasks such as making me food, running out to get more meds, bringing me a wet cloth for my head, cleaning up for me, etc. Tasks that normally I can handle on my own, but when my head is over a 7/10, I definitely need help completing. Toni makes a good point that we tend to think that our loved ones should just know what we need help with–that we shouldn’t have to ask and outline it. I have a few loved ones who will tell you I’m guilty of this one big time. Even with close family members and my significant other, I have to remind myself that they still may not know what exactly I need in a certain moment. What is helpful to me one time, may not be helpful to me in another time. They can’t read our minds and we shouldn’t expect them to.
  2. Match the tasks you need help with to your comfort level with them completing the task. Things like running errands are less intimate than perhaps staying with you in bed and helping calming your anxieties.
  3. Be direct–don’t be passive aggressive. Don’t beat around the bush, be direct when asking for what you need help with. People will appreciate that much more than trying to get them to offer to do the task without you asking.

 

In my experiences, my loved ones just want to help me feel better. Often, I’ve seen them get frustrated because they feel like they can’t do anything to help me. Little tasks that I can’t complete on my own when I’m feeling especially crappy, are ways to help them feel more helpful to me. They can’t cure me (I wish,) they can’t explain why my headaches happen (I wish,) and they can’t make my headaches any less than what they are (trust me, I wish.) But they can help me get through my day by lending a hand when and where I need it.

We as people with chronic illnesses and medical conditions live with daily physical challenges. It’s perfectly ok to ask for help and accept help offered to us to help us get through those challenges.

 

“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!

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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”

Be Kind, For Everyone Is Fighting A Battle Of Their Own 

When you’re walking down the street and breeze by the people moving past you, how often do you glance up at the faces that are blurring by? How often do you take the chance to look a stranger in the eyes and really try to read their story? There’s a story behind every face you see, each one unique and different than the story walking beside them.

Stories are more often than not, unpredictable. We don’t know who the characters are until we get to know them. We don’t know when the plot twists will turn up. We can’t know in advance if or when an antagonist will make an appearance, short lived or prolonged. There’s no telling when the happy ending will wrap everything up and tuck us snugly into bed.

Every person you come across has something they’re not sharing, some battle they’re facing, some story they’re a part of that we as outsiders, have no insight on. You see, life isn’t fair. It throws us curveballs we swing and miss at, it throws us off our paths, it presents the unexpected and its hardships discriminate against no one. 

As someone with a story of your own, the human and compassionate thing to do, is to be kind to every person you meet because you have no idea what phase of their story that they’re in.

“Be kind, for everyone you meet is fighting a hard battle.”

I’m battling daily chronic headaches, narcolepsy and chronic pain that has yet to be diagnosed. There is a constant pounding within my skull that strangers I see would have zero reason to expect me to be feeling. With my chronic migraine headaches along with my other medical mysteries comes anxiety issues, emotional lows creating a hermit like version of myself, unnecessary guilt, frequent frustration and so much more that I choose to hide either behind a smile or under my covers.

Even though I surround myself with people who are loving, kind, compassionate, generous, supportive and reliable, it’s just a fact of life that I will stumble upon people every once in a while who are less than kind to me. I’m only human and can’t help but make a sour face when sour words or thoughts are tossed my way. But I always turn back and tell myself that it’s the right thing to do to give that person the benefit of the doubt. They don’t know me. They don’t know my battles, my fights and my journey. They haven’t been given the book to start reading my story.Just like I don’t know their battle and their journey. Perhaps they are facing an uphill battle and are having a bad day filled with frustrations. So even if they may not have thrown the kindness my way, it’s all I can do to throw it back their way.

We’ll never understand what someone may be going through unless they open up to us about it. I promise you though, that any and everyone you meet is facing a battle that you know nothing about. All you can do, is be kind and show them the love you know that they need to keep fighting whatever battle that they’re up against.

What’s This Feeling I Feel?

Is it anger? Resentment? Envy?

Maybe a mixture of all three?

I don’t really have the right to feel any of them, honestly. I’m angry because it’s like I took three steps forward and ten steps backward. I’m filled with resentment because my peers are out drinking, socializing, and filling their lives with excitement on their days off, while I’m sitting inside brainstorming and researching ways to bring my pain down even just a notch. I envy people who can do things even as simple as sit around the dinner table with their families and only worry about when to get up for seconds in order to not miss out on the really good food everyone wants to devour.

I should replace my anger with disappointment, my resentment with understanding and my envy with good will. I just need to remind myself that I’m allowed to be disappointed and frustrated at my situation, but never angry. I can’t be angry because today I woke up, opened my eyes and kept on going. I can’t resent others for doing what I wish I could be. We were all given different battles to fight, and I have to understand that my battle is just different than my friends battles. I shouldn’t be envious, because I know I have good things in my life too. I should be happy that my friends are able to enjoy a life without constant physical pain. I never want to drag anyone and would never wish my situation upon even my worst enemy. I think it’s alright for me to be jealous every once in a while, because I’m only human. But I will try to push envy away from my side when I can.

 

Thursday’s Tips & Tricks: Consider Physical Therapy

Thursdays Tips & Tricks 😍⚙ think about giving physical therapy a try! 

I started physical therapy a couple of months ago (I think? My sense of time is awful 🙈). My PA wrote me a prescription for it, to have the PT work on my neck, posture and whatever they could think of to help my daily headaches. 

I can’t say that it has solved my problem (because if that were the case there would be some newly very wealthy people), but it has definitely helped decrease the intensity of my every day headaches 😁💪🏼 

I have multiple headache disorders. So what the physical therapist is treating is my diagnosis of a cervicogenic headache—again, just one of my multiple types of headaches. They work on my posture (which was so bad before) as well as getting more motion and working out tension in my occipital nerves, muscles and bones (which all impact headaches). 

Bad posture causes tension in upper back and neck muscles. That along with having occipital nerve and muscles out of whack, can definitely make headaches worse.

It was a gradual positive change that I noticed. And it took a lot of trial and error and experimenting with different methods on my PT specialists side. We found that some methods didn’t do anything while some (more intense looking) methods helped dramatically.

And you know that saying no pain no gain? That can be very relevant to some PT sessions. They work on your back, neck, muscles, bones and nerves. Some things aren’t going to feel pleasant. But let’s face it–it’s nothing compared to the pain I (and all chronic illness sufferers) battle every single day. 

I’ve had some headache setbacks during the time period I’ve been doing PT, but they have been related to other outside causes (because that’s how life of a spoonie works, right?) But I can safely say that my physical therapy team has tried really hard to help me feel better, even if it’s just a small change.

People with chronic illness can atest, even a tiny positive change is considered great progress! 

Therefore, I definitely recommend PT to someone who is in a rut like I was–where they aren’t or weren’t seeing any progress in their headaches. 

Give it a try, because Ryan gosling might massage you after (offer not guaranteed) 


You Are NOT a Burden

A couple of weeks ago, I found myself questioning everything relating to my relationships with my friends and family. Did they see me as a weight on their shoulders? Did they think I judged them for not being able to understand my situation or for not being able to put themselves in my shoes? Did they find it too tasking to have to take care of me when my head is throbbing too hard to move from bed? But then I thought: If that’s what they think, then they probably aren’t in my life anymore. You see, those who find you to a burden, they’ve probably been out of the picture for a long time now, and you’re better off that way. Because, friend, you are anything but a burden to the people who truly care about you.

You are not a burden. You have a burden, which by definition is too heavy to carry on your own

You are not a burden.

You are a miracle, actually. God gave you the gift of life. He chose you to be here, wandering this mysteriously gorgeous Earth.

You are a friend. Make a list of the people who invite you on adventures, who have a hundred beautiful, ridiculous, embarrassing yet awesome pictures with you in them, and who you share endless pizza dinners (lunch, breakfasts, snacks, don’t lie) with. The people you make laugh when they want to cry and whose aid you go running to when they’re facing a hard time. You are a friend to so many.

You are a daughter, son, sister, brother, granddaughter, grandson, niece, nephew, aunt, uncle, etc. Think back to every holiday being surrounded by the few or many special people who you know you can always run home to, no matter what. The ones who you share your best memories with and experienced your biggest arguments with. You are their family. Without you, they would be one less.

You are a gift. When you shine your light on this world and share yourself with the people in it, I promise you that you are presenting something unique that no one else is able to. You have a purpose here—a purpose designed solely for you.

You are a warrior. The physical pain you endure every day, some days worse than others, is a pain not many could endure. Every day you’re getting stronger, even when it feels like you’re weakening. You fight through the aching, throbbing, pulsing, nauseating, piercing, and everlasting horrific sensations that are indescribable to others who don’t know what it feels like to be in your body.

You are a fighter. You fight through that pain, and somehow continue to keep moving forward in your journey. You fight on, whether it’s getting through the work day without having to call out early due to a worsening symptom or it’s biting your lip to fight the pain during your hundredth unsuccessful IV insertion. You fight through the frustration, sadness, anxiety, loneliness and helplessness that come along with your physical pain. Your fortitude is immeasurable in size.

You, my dear friend, are not a burden. Your illness is a burden. It is your burden. But even being solely yours, it cannot be carried by you and you alone. Because you are a friend, family member, gift, warrior and fighter, the chances are that you have a support system to help you carry that burden. Do not be afraid to ask for help. For the ones who are meant to stick around, will ask how they can help lift that burden whenever they can. You are not a burden and you were not made to carry this burden alone.

Even Big League Pain Meds Won’t Help This Hall of Famer 

It’s been a full week since this  pounding, throbbing, pulsating, evil like migraine has started. 

With no end in sight, I went to the ER for acute treatment to at least get rid of it for a while.

After 4, yes 4 tries to get an IV in me, I was administered the big pain killers. 

Sidebar: I’m sorry but even if I don’t have the greatest of veins, it shouldn’t take 4 very painful tries to get an IV. Also don’t ask me “are you usually difficult when it comes to IVs?” Lady, even when I’ve been very dehydrated, people have gotten my vein on their first try. This is the second time at this same hospital that they have take 4 times to get a vein. And mind you, they hit the wrong place a couple times cuz it was much more painful than normal.

Ok sorry, to continue:

I was hopeful that at least this would get rid of my migraine until tomorrow.

Well, I felt relief for all of an hour. And then dude hammering away in my brain started hammering away again.

The pounds. The thuds. The beating. 

It all is back. 

So now what? What’s a girl to do now? 

I’m trying very hard to trust in God’s path for me. Trying very hard to keep the faith strong when the entirety of me is weakened to a pulp.

My fear is an ocean and my worries are a swarm of gnats in the summer heat.  

  
Will try to sleep now and pray that tomorrow brings new hope, new relief, (and once science gets there, a new brain 😁) 

In high need of good thoughts, prayers, advice, hugs, and puppy cuddles. 

I accept any or all of the above 

💛