“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.

 

Monday Mantra: Beautiful Things Come From Not So Beautiful Places


We’ve all been there: the dark and scary places, the rough patches, the slumps, the unwanted changes. You won’t see it until you’re out of those places (I know I for sure didn’t) but beautiful things will come from them. Some of the most beautiful things and people in my life came after I went through some pretty ugly stuff.

Monday Mantra: Stay Strong, My Soldiers. 

After 10 or so years of fighting different headache disorders while also running into a variety of other health issues, I’ve been reassured by family, friends and strangers that I’m strong. People have said (thinking out loud it always seems) how they can’t imagine how I do it.
While recently I’ve only felt weak, it’s nice to hear others see something different. 
Sometimes, I don’t know how I do it either, though. But I do, because I have no other option. There is no giving up. There is no throwing of the white flag.
So stand tall in your invisible cape. Stay strong. Keep fighting. People never will truly understand how you handle it all, but that’s because they don’t know how strong you really are. 
  

What’s the Word? A Word That Connects Us 

NEXUS: a connection or series of connections linking two or more things.

  
Our stories, journeys, struggles, successes, hardships, defeats, and accomplishments all link and connect us here. I had never considered myself to be one of many who have health issues such as myself, and I was never more wrong. 

The positivity and inspiration I see from all of you on my feed is so overwhelmingly great and I’m so happy to have a connection to you all, even if it is through health issues

Tips and Tricks: Resource Pages 

  
Recently I’ve added three new pages to my blog: resources pages for headaches/migraines, narcolepsy, and food allergies.
I went through all the resources as I was choosing which were most beneficial to share (there’s a lot, because there’s so much helpful info out there!) and realized that I wasn’t even aware of half of the info/websites/etc that I shared. That means that there are so many resources for us spoonies to take advantage of: clinical trials, foundations and organizations, blogs, support groups, fact sheets, and so much more! 💻📋📝 I strongly urge you to visit some of these resources every week or so because there’s always new info for us to take advantage of. We need all the help we can get, might as well take advantage of the free help! 

Song of the Week: “Lean on Me”–Bill Withers

 

If there is a load
You have to bear that you can’t carry
I’m right up the road, I’ll share your load
If you just call me

This song of the week is for all of the people who have stood next to me in this health journey of mine. For the people who said without hesitation “lean on me,” “I’m here for you,” “how can I help?” For the people who have helped me carry the load when I’m too weak to carry it alone.For the people who ask how my doctor visits are going (if they’re not there themselves), who check in to see how I’m feeling that week and if I’ve made any progress. For the people who will read this and know without a doubt that they’re the ones I’m talking about. The ones who whether they’re sitting beside me, or sitting miles away in another state, are there when I need someone.

This song is also for all of the people like me,  on my side of the journey. The ones who have felt troubled, pained, sorrowed, and frustrated (aka every single one of you.) For the ones who have needed someone to lean on. For the people who too often let their pride get in the way of asking for help. To the fighters.

 

Song of the Week: “Lost in My Mind” by The Head and the Heart

This is by far one of my favorite songs. I felt a strong connection to it after hearing just the first line. However, my favorite verse in this song is one of my favorite verses from all songs:

Mama once told me
You’re already home where you feel loved
I am lost in my mind
I get lost in my mind

This song kick-started my love for The Head and the Heart and all of their other amazing songs–some of which I’m sure I will share at a later time.

I listen to this song when I’m feeling overwhelmed, sad and lost. But the beautiful thing about this song, is that I also listen to it when I’m feeling content, happy and blissful. There aren’t many songs for me that can capture my heart and mind at both ends of their emotional spectrum.

This song has created for me inspiration in many areas of my life. I more literally get lost in my mind when this song comes on.

Give it a listen. It won’t disappoint.

My Headaches, My Life, My Story.

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This is what someone with an invisible disorder and chronic pain looks like. While it’s not visible on the outside, it’s very much real on the inside. Even though I look like I feel ok, most of the time I don’t. Starting this blog and my Instagram account (@theheadacheheroine) has allowed me to open up more than I ever have before about my health journey. However, it has also left me feeling very vulnerable and nervous of what others may think. Still though, I’m so happy to be doing it because it allows me to spread positive vibes while supporting and reaching other people who may be feeling the same way about something in their life, health related or not. I hope to be able to support fellow chronic pain and invisible illness warriors stay strong through their own journey.

Therefore, I’d like to share my story with you.

I started getting exertion headaches around the age of 12. It was a new and terrible feeling. I played competitive fastpitch softball at that time (and up until I was 16) so I was exercising and exerting myself almost daily. When the heat was bad and the humidity was high, and I was exerting myself out on the field, I would always get terrible pounding headaches.Resulting in me laying down, sitting out games and practices and feeling like a bit of an outsider compared to my teammates. I wasn’t sure what to do about it, so I just ignored it for a couple of years.

By the time I was 14 I started looking into seeing a doctor for my headaches because they hadn’t gotten any better. Between the time I was 14 and 16 I had seen neurologists, ENT specialists, allergists, and general practitioners. I had undergone an MRI, CT scan, allergy tests and IV’s. I had tried a wide variety of medicines as well. Nothing seemed to help.

During my teen years, I also found myself in the ER more times than I ever wanted. Dehydration, repeated fainting, more dehydration, extreme stomach pains, and more dehydration (or what they claimed to be dehyrdation.) I never truly understood what was happening to my body. I was constantly interrupting big plans (New Years Eve parties, Mother’s Day, and surprise parties for family members to name a few) because my health kept sending me to the hospital. It’s a terrible feeling knowing that you’re the reason parties got canceled and peoples nights were ruined due to worrying about and taking care of you. (s/o to my older brother who didn’t get mad when I threw up on his shoes outside the house next to the ambulance, my best friend for sticking by my side in the ER on News Years Eve instead of at a party with all our friends, and for my parents for always telling me they didn’t mind spending hours upon hours in a cold, stale hospital room.)

It had come to a time where I had to decide that my health was more important to me than playing the game that I had such a passion for, which was softball. I was an athlete at heart. Since my dad was the head coach, him and I were the glue that kept our team together. Therefore, my quitting resulted in the disbanding of a team that had been together for 7 years.) It was the hardest decision of my life at the time, deciding to quit playing for good. It definitely had a significant impact on me mentally and emotionally. It led me to a sad period of my life. I didn’t know how to fill the hole that was once occupied with the love of the game and my teammates that I considered family. After a year of being sad, I decided to take charge of my health and see more doctors. This time, I was prescribed Topamax (an anti-seizure drug that is sometimes used to prevent headaches and migraines.) I was hopeful that this medicine would help me, but it did just the opposite. I experienced major negative cognitive side effects. I couldn’t retain information, my short term memory was crap and I just felt foggy and dumb. After a while I knew I couldn’t be on that medicine anymore. But this only lead to more disappointment and being unsure about the future. While I was still upset to not be playing softball anymore, I knew it was in my best interest and that it would open up new doors for me. Which it did. Instead of trying to get recruited to a school to play ball like most of my teammates were doing, I ended up at Virginia Tech. Which was the best thing that had happened to me in so long. I met lifelong friends and made incredible memories that I will never let slip from my mind.

During my time at Virginia Tech, I did trial and error with a number of prescriptions given to me by different doctors. Beta blockers, blood pressure medicines, anti-seizure drugs, OTC meds,etc. You name it, I tried it. I’ve gotten multiple blood tests done (one time 8 viles of blood at a time, to which I of course passed out during the process of taking my blood.) None seemed to do anything helpful. It was getting frustrating and redundant. At school, I ran into my other fair share of medical problems that either landed me in the ER or another type of doctor’s office. Thankfully, I had family and seriously amazing, loyal friends who sat by my side in waiting rooms and who drove me when I couldn’t drive myself. (You all know who you are, and I am seriously forever grateful and blessed to have you in my life.)

It kind of became my “thing.” You know how people have “things?” Some people have a singing talent, some people are always the top of their class in school, etc. Well my thing was always being in a doctor’s office or hospital. My thing is that I’m always getting blood taken. My thing is that I have a fainting problem. One time I called my dad from school and he answered with “What hospital are you at this time?” (Granted he was saying it in a joking manner…I think…but to his credit I actually was sick at the time.)

It’s not a “thing” I’m very proud of. But it’s something I’ve embraced.

Flash forward to now and I’ve kind of started from square one again. I’m consistently seeing my neurologist, trying out acupuncture, sleep studies, allergy testing, eye doctors etc. It’s such a trying process, but I don’t want to just give up even when I don’t see results. The thing is, I know there are people out there fighting for their lives. People who live at the hospital. People who have to deal with chemo and things so much worse than what I’m going through. People who are so much stronger than I’ll ever hope to be.

While I constantly pray for those people and hope with all of my heart that they find the answers and cures they deserve and need, I’m still proud of myself for fighting my own battle.

I’ve learned a lot about myself throughout this whole process. I’ve learned that I can get knocked down and get back up again. I’ve learned that no matter how many times I get blood taken, I will never get over my uneasiness and hatred of needles. (seriously, I get weak every time.) I’ve learned that it’s ok to cry. To feel sad and frustrated. Defeated and broken. But in contrast, I’ve learned how to make myself keep being proactive and not to give up. I’ve learned coping methods and survival techniques. (AKA I’ve learned how to really binge watch Netflix and how to match my mood with a fitting ice cream flavor.)

I’ve learned a lot about the people around me as well. I’ve learned that people come and go and that that’s ok. Some don’t understand while the others try their best to. I’ve learned that I have the most amazing parents and siblings who go to doctor visits with me, check in on me, encourage me, and do whatever they can to help me feel better. I’ve learned how to tell who my really close friends are and how to never let them go. Meaning, I’ve learned who my “people” are. The ones who encourage me when I’m discouraged. Build me up when I’m feeling broken. Be strong for me when I’m too weak to be strong for myself. They can say the words I need to hear even when I don’t want to hear them.

I’m not sure what I really expected people to think about me and my thoughts when I started this blog. I obviously knew I was letting people, friends, family and strangers, into my mind after I published my first post. People will have their thoughts and opinions, I’m ok with that. I’m ok with people reading every post, looking at my blog once in a while and I’m also ok with people not ever even taking a glance. That’s because I started this for two reasons, and two reasons only. I started this blog to help me find solace through writing. To really create an outlet for myself as I continue to go against this obstacle that doesn’t seem to have an end in near. Secondly, I started this so that I could maybe reach other people who are struggling with something similar. I hope to encourage other people and create a support system for someone who may not have the support they need. I do this to hopefully help people stay positive even when the day seems to have nothing positive in it.

So I thank you for reading, supporting and encouraging me.

Maybe now, someone else will find inspiration to take their own personal story and struggle and turn it into something positive as well.