Tackle Your Tuesday: You Can Do It!

Living with a medical condition (or many) inhibits your ability to do so many things that others are capable of doing. For me that includes: running, exercising without pain, living without fear of pain ruining your plans, etc… 

But just because I can’t do those things, doesn’t mean I can’t do things that others may not be able to. That includes writing, advocating, becoming a finalist for the WEGO Health Activist Awards, and so much more.

Try not to think about what you cannot do, and put your focus on what you can do. And change the world with it. 🌎🌄

“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 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.”

 

What’s the Word? “Vatic” 🔮

Wednesday words ⚡️(Adj.) Vatic

I’m 
Maybe I can’t speak for everyone with chronic illnesses, but I know that I find myself trying to predict my “inevitable” future all of the time. I say things like “well I know my head will be really bad this weekend” or “I’m sure I’ll be feeling crappy still” etc. everyone always says “don’t think that way.” It’s a lot easier said than done for someone who has seen the same headache patterns continue for years now. 

But even though I don’t always do it successfully, I do try my best to not think so negatively and I try not to predict how I’ll be feeling in the future 🔮

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.

Knock Down Those Walls

 

It’s a heavy, unsettling feeling when I think back on all of the instances I’ve shut myself in my room or found a place where I could be alone without worry just so I could sit alone with my anxious, bitter, and angry thoughts. It’s been years since my life with a constant pounding head has began and I fear it’ll be years before I ever see that change.

 

I go through spells, you see. I’ll be doing really well mentally–even if I’m not doing so physically. I’ll put on my front for people that I care about and turn my mind to other things so that I can enjoy life, like I’m supposed to. Sometimes, I even feel OK. But then, as if it’s a routine I’ve made for myself, I hit my spells where I feel it’s best to pretend to be hermit-like. I use the word pretend to make myself feel better.

 

The same people who make my life brighter and with whom I enjoy my best moments with, are the same people I tend to push away or block off when I’m at my darkest. It’s a terrible habit I don’t recommend picking up, but that I know I’m not alone in possessing.

 

I retreat into my lonely “why me” world. I have no desire to see anyone or get out of bed, really. It’s a sinking feeling that I’m not sure quite how to describe in words. The people who care about me tell me to let them in, to open up and talk to them. They tell me they hate that I feel like I have to seclude myself and not speak about how I’m feeling or what I’m enduring. They say they can’t imagine how hard it must be to fight this daily battle and feel the headaches I feel every single day.

 

The thing is, I would love nothing more than to want to open up and talk in those moments. For everyone who has someone in their lives who is battling some kind of fight and acts like I have described myself above, please know, it’s not a choice we make. We don’t like putting up walls, it’s just in our nature.

“Sometimes you put walls up not to keep people out, but to see who cares enough to break them down.”

― Socrates quotes

 

 

I hate that I block people off and push people away in these moments. It’s a double edged sword for me. I don’t feel like talking about my pain, but I also don’t want my support group to feel like I don’t want to talk to them. There’s no winning really in this back and forth game.
All I can say to the people who I’ve kept out with by putting up these walls is, please never stop trying to knock down those walls. Even when I push you away with all I’ve got, even when I seem like I’ve lost the ability to speak, even when I come across like all I want is to be left alone–please never forget that it’s just in my nature to go through these spells and that the last thing I want for you to feel, is unwanted.

Mary vs. the MRI Machine

My Neurologist doctor is like that super fancy 5 star restaurant where people are on waiting lists for months just to get a taste of their high-class plates–He’s got a lot to offer, in super high demand, and has to be booked six months out.

Most often, I see my Physician Assistant–who is super awesome, has exponentially furthered my forward progress finding help for my headaches and I love seeing her. But, seeing the actual doctor is a different type of visit. He’s just so intelligent and has a different way of thinking, so there’s always something new that I learn and he always suggests a new path to try.

Today, I continued to explain my symptoms. I told him how my atlas orthogonal treatments (post all about that coming soon!) has helped decrease the intensity of my daily headaches, but hasn’t helped my exertion headaches. Nothing has. I still feel the intensifying pounding when I do yoga, lift, run, walk up the stairs, bend over, etc. From heavy workouts to mundane every day tasks like walking up stairs–my headaches intensify and the pounding begins immediately.

Apparently, patients who experience that same type of thing (headaches intensifying by coughing, bending over, walking up stairs, etc.) often have a blockage in their venous channel. So perhaps I am among those patients. Of course, it’s a very uncommon occurrence, but people close to me know I’ve never been one to exactly fall into the “norm” category, esp. when it comes to my health.

So what does that mean? It means I have to get another MRI–but this time an MRV. It’s an MRI that looks specifically at your veins to look for blockages. If it’s positive, there’s a treatment where they put a stent in to clear up that blockage and open up flow. If it’s negative–well, then more MRIs will be taken and more serious tests need to be addressed.

So here’s to hoping that this MRI is positive (I don’t normally wish for that, nor do many people.)

Let me ask you this: how annoyed and frustrated are you when you’re not able to exercise because you’re sick, or you have a concussion, or you pulled a muscle, etc? Probably pretty frustrated (for the most part) because you want to feel active and youthful. Well, I haven’t felt active and physically youthful in about 7 years. I’m 23 years old and simply walking up the stairs and briskly walking across the room makes my head feel like it’s about to blow. It’s extremely discouraging. All I want is to be able to do yoga, run around carelessly, start  lifting again, doing anything really. Being unable to exercise or be active makes you feel lazy, large and lame. It starts to eat at your self-confidence and self-image. I say this because before my headaches became the way they are today, I was physically active every day and loved it. I loved being active and working to stay fit. It’s not even an option for me anymore.

So knowing that a positive MRI and implanting a stent in my veins could possibly bring me my old lifestyle back makes me oddly wish for a positive MRI result.

 

Anyone else out there experience exertion headaches like me? Or in any way, shape or form?

I’d love to hear your stories, advice, etc! We’re here to support and encourage one another 🙂

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.