For Those People Who I’ve Pushed Away

I’ve recently stumbled across the website The Mighty. It’s a website where people living with disabilities, diseases and mental illnesses can submit their real stories and have them published to not only reach those who suffer as well but to reach those who live with and love someone who is suffering. It’s an awesome site and It’s definitely worth checking out whether it’s relevant to you right now or not.

Recently published on this site was an article written by a young lady who I can very closely relate to regarding an issue that I’ve never really figured out how to quite put into words myself. She did a wonderful job doing so for me and everyone else who feels the same way.

Read the article here–“To My Loved Ones When I Don’t Want Your Company”

When I’m facing a high (as in a 9 or 10) pain day, most of the time I want to retreat to my bed, curl up under my covers and escape into my own world. Like the writer of this article said, it’s partially for my loved one’s sake but partially for my own sake.

I push my loved ones away for their sake because I don’t want them to feel uncomfortable or sad.  So often when someone sticks around, I’m worried about how my health issues are taking over their life as well. My weakness is causing their mental and emotional strength to waiver and I will feel the need to protect them and to comfort them. While there are other times I am able to do this, during high intensity pain days, I don’t have the energy to do that.

But part of it is for my own sake. When I’m facing days like these, I end up getting so totally lost in my own head. I spend my time wondering how my heavy, throbbing head can feel so physically disconnected from the rest of my body. As the writer states in the article, it’s such a personal experience to feel so unwell to the point of not knowing how to handle your own body let alone your thoughts that arise from the unbearable pain. It’s an experience I don’t want anyone else to have to witness.

There are times when I need solitude and there are times when I need my loved ones around. Don’t feel as if it’s a personal attack when someone with a chronic disorder asks for you to leave during these high pain moments. We may not want you there in that moment, but we are so grateful for your willingness and readiness to be there for us whenever and wherever we need you.

 

Time Stops For No Man

A not-so-friendly reminder for anyone who lives with a chronic condition or a continuous hardship that often keeps them holed away inside: The world keeps spinning, the clock keeps ticking and the years keep flying by.

This thought makes a continuous loop in my mind, driving me almost mad. Have you been driven mad by it before also? If you’re thinking to yourself “no I haven’t,” then please share with me your secret.

I’m in a period of my life where I’ve been handed multiple bad hands all around the same time. Do I think I’m the only one in this position? Of course not. Am I grateful that my situation is not worse? Always. But do I still lose myself to an overpowering feeling of frustration and helplessness sometimes? If I said no, then I’d be lying to all of you as well as myself.

Today I woke up with a headache that I knew was going to stick around for the rest of my Saturday. As my body and mind awakened, I couldn’t help but think”here we go again”–A thought I’m usually very capable of pushing away, making room for much more encouraging and positive thoughts to fuel my day. But I’m only human and we all have our moments.

A day of pre-planned activities, of seeing family, of changing out of my sweats and leaving the house, all slipped from my fingers before I even had a chance to attempt to keep my grip on it. My bed was my companion today and my thoughts were that friend in the group who always shows up unwelcome and then sticks around until you show them the door.

Most of the time, I give myself an hour or two before I kick myself into gear and start acting like my normal self again. But there was one thing my brain just couldn’t let go of today: The idea that I have wasted (and will continue to waste, as it’s looking right now) so much of my little time here doing nothing fun, nothing of significance and nothing that will make memories, due to my headaches tying my hands and my feet to my bedposts. I’ve spent so many mornings, afternoons and evenings wondering what other people are up to while the next episode of Friends automatically starts playing on my laptop. It leaves me feeling so full of resentment. It leaves me feeling like I have to play such a large game of catch up with the rest of my family and friends the next time I’m feeling up to getting out of bed.

If you’re reading this and rolling your eyes thinking “Girl, lose the drama because you have it nowhere near as bad as other people” Then please, keep thinking it, because you’re absolutely right. I still have a functioning body, an intelligent (boastful, much?) mind, and all of life’s necessities at my fingertips. I don’t live in the hospital, I merely just make my friendly visits there. I take medicines to help me get along, but I would be able to survive without them. My life is wonderful in comparison to thousands of others. I’m incredibly lucky to be able to do so many every day activities on a pretty routine basis. So I apologize in advance if my venting offends anyone. My problems are so minute and I resent myself for thinking those thoughts of resentment and for sometimes adopting that “woe is me” mindset. It’s a terrible cycle to jump into. Grab a hold of the rails before you accidentally fall into it as well.

I don’t enjoy sharing these thoughts with others, mainly due to the fact that I don’t want to seem ungrateful for what I’ve been blessed with in my life. But, why have this blog if I can’t write about what I am honestly experiencing, feeling and thinking? My purpose of starting this all was to reach others who might possibly be feeling something similar to what I am feeling. I’m sure other spoonies out there, and even other people who may be facing something in their lives that are keeping them from doing everyday things they hope they could be doing, know this feeling of losing time to something that so often takes control of their lives.

I didn’t mean for this post to be a buzzkill, per se. It’s one of those days, though, where writing has been the only outlet that has helped start to set my mind right again.

I wish I could practice what I preach more often and focus on the positive things every day of my life, but as many things are, it’s much easier said than done.

A goal of mine now, after having spent the day angry about the lost time in my life, is to spend every waking moment that I feel healthy enough to be doing something other than lying in my bed, doing something new, exciting, adventurous, fulfilling, thoughtful, and memorable.

There’s no real way to know what tomorrow will bring. But I do know that I’m going to take full advantage of every moment that I can. I don’t want to be afraid to hear the ever-present clicking sound of the minute hand ticking away on that clock on the wall.

 

Thoughtful Things To Do For People With Migraines 

Sometimes we all need a little help

Migranieagain.com recently shared a post that I couldn’t not share with all of you on my own blog. While I found myself relating to it’s content so easily, it’s more geared toward the loved ones of people who suffer from migraines.

As someone with chronic headaches and migraines, even when I know I need help, I still hate asking for it. It’s very common among spoonies to feel like we are a burden on our loved ones: needing to be taken care of, having to cancel plans with them last minute, occasionally letting our frustration out on them.

It is often hard to ask for someone’s well wishes and good intentions. And I know that many people in my life, even when they try their best to help, still feel helpless. It’s not that we don’t appreciate the help, but often there isn’t much another person can do to help.

This post shows how people can help migraine sufferers in their life suffer a little less, live a little more, and feel cared for even when it’s too hard to ask for the extra bit of care.

(You should go through and read the entire thing, but I will just list a few that really stood out to me)

  • Ask “what would be fun for you?” -Often, certain events like concerts, going to smokey bars, and hiking cause migraines to pop up. Try suggesting activities like yoga, crafting, or seeing a movie instead.
  • Say “no problem” when plans get cancelled: -It’s an awful feeling to have to cancel last minute on a close friend or family member due to a migraine. Try to remember how upsetting it is for the person with migraine (uh, hello FOMO). The guilt is strong. Even if you are frustrated or upset, just saying “no problem” even when a person has to cancel plans on nights like birthdays or holidays shows immense compassion and kindness.
  • Make a migraine care package-So many things are helpful when trying to get rid of a headache. Earplugs, blankets, water, lavender, etc. Why not package them all up for someone for easy access!
  • Make a donation to Migraine Research in their name-Migraine disorder needs much more attention. So many people suffer from migraines and it needs the research and awareness it deserves to prevent the next generation from suffering as well.
  • Drop them a note-Whether it’s an email, handwritten card, or scribble on a post-it-note, getting words of encouragement and good thoughts is so powerful in helping a person continue to fight their daily battle.

(**The post I referenced throughout my own post comes from migraineagain.com )

Zero To Hero

  
At some point in life, we will be broken. It’s inevitably a part of living. The hope is that we can rebuild and become strong at those broken places. Ernest Hemingway was a powerful writer and I find myself connecting to so many of his words. 

People with chronic pain or illnesses have a higher chance of being broken more than once, I think. There’s so much physical, mental and emotional struggle that comes along with the chronic pain we face. It’s a packaged deal and we don’t have the option to pick and choose which we go up against. 

For the past two months or so, my headaches have been relentless. Forcing me to force smiles and laughter. Making me work twice as hard as I normally would to do everyday tasks and things I need to do to get by. I’ve had some sincerely joyous, carefree moments within these two strenuous months. I do manage to have fun and truly laugh beside friends and family even during the worst of it. But when I take a step to the side and have a sidebar of my own, I have felt myself breaking to the point where I know that I’ve been broken by this life. My headaches have pushed tears through my eyes and created a nonstop state of frustration. It’s as if I’ve hit a wall because I have all these different directions I can go to try to figure out a “cure” or a diagnosis. But it’s hard to try to figure out which is the best road to go down first. 

I want to be one of the “some” that Hemingway talks about in this quote though. A part of the some that walk away stronger at my broken places. I’m determined, really, to be a part of that “some.” So I truck on, keep seeing different doctors, taking different tests and trying a wide range of tricks to try to help bring my headaches down even just a tiny notch. 

So if you’re feeling broken, just know you’re not alone. Know that you’re not a victim, because it happens to everyone. But also remember that you can take that feeling and build upon it. You can either let it continue to drag you down leaving you in pieces for someone else to try to put together, or you can become strong at those broken places and know that it will only turn you into a stronger fighter and more compassionate and empathetic person. 

Song Of The Week: “i” by Kendrick Lamar

Dreams of realities peace
Blow steam in the face of the beast
The sky can fall down, the wind can cry now
The strong in me, I still smile

This song can be interpreted many different ways, I think. However, I hear it as an anthem to loving oneself as well as standing up and smiling in the face of adversity and hard times.

The song is about someone who feels so small and defeated, yet has faith in God and stills smiles through it all. It kind of asks in a way, when it comes down to it, are you going to give into the fear, frustration and anxiety? Or are you going to stand up against all of that, lift up your head and keep on moving?

I’ve faced times when I wanted to give into my pain, allowing it to take over not only my body but my mind as well. After a while though, I know the right and healthy thing to do for myself is to pick up head and keep moving. To keep trying to find answers and to keep fighting.

This life is too beautiful and miraculous to let the bad stuff suck you in. Lift up your head and keep moving through whatever hard time you are facing right now. You all have so much to love about yourselves. Your beauty, creativity, kindness, intelligence, compassion, empathy and so much more. Love yourselves so entirely that it makes you want to stand up and scream just like Kendrick does in this song, yelling “I LOVE MYSELF!”

Acupuncture–Take One

Today, I laid in a doctor’s office with 18 needles sticking out of my face, ears, hands and feet. I have been wanting to try acupuncture for a while, and today I finally did it. My whole apprehension to needles and fainting reputation held me back for a while, but it wasn’t that bad in the end.

My neurologist and past chiropractor had suggested just giving it a try. They warned me that since everyone’s bodies are different, not to base my decision to try it on other people’s success stories or lack of success from the method. They told me some people feel a difference right away, some it takes a few visits and some don’t ever feel relief to their pain or a change in their body.

I’ve reached the point though, where I am willing to try almost anything to see what may help my head. I’m on the path to some more drastic methods, but in the mean time I’m trying everything else I can think of before diving into the more intrusive type procedures.

I can assure you I looked nowhere as peaceful and relaxed as this person here does. Not sure how one ends up looking this way with needles sticking out of your face.

Anyways, I sat there with needles in my face, ears, hands and feet for about 10 minutes. While I didn’t notice much of a difference today, I’m going to go back and see if a repeated procedure helps at all.

One positive from this appointment was getting a different opinion and insight from a different type of doctor. A doctor who thinks mechanically and a little bit outside of the box. He gave me great insight and his thoughts as to possible causes for my pain and assured me he would look into everything I handed him in order to see if he can help at all.

It’s not a doctor I would have ever really thought to go to, but he really did point out some things about my body that other doctors have not been able to do.

So if you’ve been debating whether or not to try this method yet, I say it’s worth a shot! You never know what different things you may hear or if it will help until you try it! And if I didn’t faint with the needles in, then neither will any of you!

Where’s My Dawn?

As difficult as it has become, I try my damnedest to believe that it’s always darkest before the dawn.

For roughly the past month and a half, my headaches have not left my side for a single moment. They haven’t paused for interviews, social outings or even sleep. Something like this takes a toll on one’s emotional and mental state, not to mention physical as well.

I’m a very social young adult. I have a good group of friends that I really enjoy hanging out and going out with. I have amazing family who I cherish dearly and spend a lot of my time with as well. And I have a guy who has somehow learned to put up with me through thick and thin.

But I also have these headaches that don’t care if I see or spend time with any of these people.

Being cooped up on the weekends and not being able to go out and act like the 22 year old that I am has really started to create this grey, sad cloud around me. I know there are hundreds and thousands of other people who can relate to this in some way, and I feel for them.

I try to keep these posts uplifting and positive, but even I have my moments of weakness.

Anyone with chronic pain or illness has seen the darkest at some time, but the trick is to hold onto the hope that we will one day see the dawn.

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I’m in the darkest now, but praying that my dawn is trailing close behind.

They Say You’re In Control Of Your Own Life. They’ve Obviously Never Talked To Someone With Chronic Pain.

Over the years, I’ve learned a lot about myself. Not only due to the obvious causes (aging, growing, maturing, etc) but due to my chronic pain as well. My chronic pain has given me a lot of insight into why I think and act the way I do sometimes.

See, my daily headaches have taken control of my life. They control my day, what I do during the day, who I see, my ability to work, play and exercise. They control whether or not I have to cancel plans or if I can go out and be my social self. They control what I eat and when I sleep. I’ve lost a lot of control in my life to these headaches. They’ve taken the reins on this one.

Starting this blog has resulted in me really digging into some  of my emotions, feelings and reactions that I have because of my headaches. I take a lot more time to actually think about myself and my situation. Recently, I’ve noticed that I’ve become more of a controlling person. Molding myself to where I have that personality trait where I want to control the things around me and sometimes try to control what the people around me are doing. It’s not the most endearing quality and can often make me come off as being unreasonable.

I hadn’t noticed this until pretty recently. While I’m not proud of it, I can try to explain it.

Losing so much control in your life to something like chronic pain results in you wanting to control whatever else you can in so you aren’t left feeling completely subordinate to your pain. It’s a subconscious thing I guess. Feeling like if you can’t control so many aspects in your day and life, why not try to control whatever you can? While my headaches control my pain level, I can control my reaction and feelings like anger, frustration, optimism, faith, etc. (although it’s much easier said than done.) However, because my headaches control my plans throughout the day, I think I subconsciously sometimes try to control other people’s plans so that I don’t feel totally left out. This is one situation, among others, that I need to work on. I’m sure I could think of many more examples regarding this idea of control.

Some people who know me may read this and laugh and think I’ve always been this way despite my headaches, but I like this explanation better. I’m hoping that other people in the chronic pain/disorder/illness community can tell me that I’m not alone in this feeling. That I’m not the only one who has noticed a loss of control in their life, while also gaining a more controlling personality.

Everyone around us has their personality flaws. While some flaws people are born with, others they have developed due to a situation we might not notice they’ve been through or are currently facing. Instead of brushing someone off because they’re too noncommittal, stand-offish, or controlling, try to be patient and understand that sometimes these flaws develop from a place of pain, experience and struggle.

Song Of The Week: “Shake It Out” by Florence + The Machine

and it’s hard to dance with the devil on your back, so shake him off. ooooh!”

This song captured me the moment I first heard it and will never get old for me. Not only is her voice moving and powerful, her the lyrics are as well. Her voice is so pure and strong, it’s hard not to be entranced by it. This song has such an uplifting feel about it.

I think it’s about letting the past be the past. About letting go of your demons so that you can move forward onto something better. About not letting something bad from the past hold you back.

However, I can relate it to my health as well. For people with chronic pain, it’s hard not to get angry because of the situation we’ve been handed. I, myself, have found myself multiple times being so angry and frustrated that my headaches have taken over my life and caused me to alter everything I do because of them.

However, constant anger just leads to your own demise. I try to get my anger out by writing, crafting, cooking, hanging with friends and listening to songs like this. If you focus on something better, something more positive, the anger can disappear. We need to make anger take a seat behind happiness and joy. This song really embodies that idea. That we need to shake off our inner demons, anger and frustrations. Shake it all off because it’s always darkest before the dawn. We go through the bad times to make way for more good times.

I listen to this song when I am sad & discouraged but also when I’m feeling proud and brave.

This song is definitely worth a listen (or a few)!

Sunflowers

  
Reminding me of two things: why I love sunflowers so much and to find the good in not so good situations. 🌻🌻

Finding silver linings and pushing our way through all the negativity and frustration of our daily struggles is what gives us the strength to keep going. Find the sunlight ☀️