Wisdome from a Chronic Illness Warrior

I am excited to have a beautiful warrior from the Chronically Hopeful Facebook page guest blogging for us today! “Ellie is a 45 year old woman living in South Carolina.  She has battled Malignant Multiple Sclerosis with grace and courage. She works as a cashier, but is always dreaming of more, she’s just not sure of what more is. Her favorite hobbies are reading, writing and yarn crafts. Her biggest hope in blogging is to help no one ever feel alone in their journeys with chronic illness, or anything else.” Please check out her blog here.

 

She never wants to meet me for lunch. It’s the only time my health will mostly fully allow me to socialize outside the home. My friends know this. She never answers my phone calls. That email has been sitting there unread for days. He won’t answer my texts, but he’s all over social media with all those silly memes. The phone shouldn’t ring off the hook every time I call for an oil change appointment only for me to come home to 3 messages on the answering machine asking why I haven’t scheduled my service appointment.

 

There’s no reason I can see for me to be number 68 of 123 on hold for a customer service rep when I call to try and straighten out yet another medical bill. Yet I am. It’s only more aggravation added to a life already made extra stressful by multiple serious and chronic illnesses. Can’t people act right if they’re going to be a blip on my radar? Don’t I deal with enough already just fighting to live?

 

There’s something I’m forgetting in the throes of all these medical appointments, treatments and pain-  the world won’t stop spinning because I’m always in pain. It won’t even slow down a little. I have to jump up on the ride while it’s spinning, full turbo blast speed ahead. Sometimes there’s a kind passenger already onboard willing to help out, but not usually. I must adjust and remember that people in my life are more than just blips on my radar, even the people just passing through and the strangers I encounter.

 

In a life full of illness and pain and the extra stress and hardships they cause, people are everything. My city is in the midst of a big cold snap with high temperatures in the 30s. I was sitting outside the library to cool off because my body doesn’t regulate temperature the same way as “normal” people. There was a shirtless man in shorts walking by on the sidewalk. He was singing loudly until a police officer pulled up beside him in his cruiser. I wondered if there was going to be some kind of huge scene because the lyrics the man was singing were not the nicest ones.

 

There was no scene. The police officer talked to him quietly and then reached back in his cruiser and put a coat on the man. They then got in the car together like they were friends. I hope they went to a shelter if the man needed it.

 

Many years ago I was grocery shopping with my mom and saw a woman crying in the store. We asked if she was ok. She said yes and we didn’t press the issue, but it didn’t look like she was ok. We carried on with our shopping and rounded a corner and there was the woman full on sobbing sitting on the floor in the produce section. The store manager was on his knees beside her praying. It seemed to help her.

 

Many years later, this event is still having a profound impact on my life. I didn’t know religion in any way at the time. I was dead set against it, actually, and quite vocal about my lack of faith. Time has changed that, and recently I went back to this store to see if that manager was still there. He was. He too remembered the crying woman. I told him what an impact it had on me. The conversation I had with this manager will stay with me forever, and well, is too private to share, but it, and the crying lady were a huge stepping stone on my path to a faithful life.

 

Please remember that as we go through life with disease and pain that everyone is going through something. Illness that doesn’t go away does not make our pain different than anyone else’s. It may mean there’s less of a break, but pain is in the eye of the beholder, everyone feels it differently. Just like beauty, and that is a beautiful thing.

 

 

 

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Rebellious Worship

Rebellious worship, those words don’t seem to fit together. Except for, of course, in my case. I find it necessary as the Holy Spirit moves me to be rebellious in my worship.

You see, I have several chronic illnesses, one of which is Hyperadrenergic Postural Orthostatic Tachycardia Syndrome. Professionals are advising individuals with POTS to avoid singing. Generally speaking, I follow advice to a T. However, there are times in worship, I am rebellious. Personally, singing allows me to connect with God and worship Him in an extraordinary manner.

Worship is more than a song, therefore there are many alternative ways to worship God. No one style is better than another. Never the less, music holds a special place in worship. Perhaps this is because many admirable Christians worshiped this way; such as King David, Mary the Mother of Jesus, and Jesus.

I have been singing praises to God for as long as I can remember. Some of the times I had been most filled with Christ joy was during worshiping Him through singing. I have many lovely memories, which I cherish, singing praises to the Lord with friends as an adolescent.

It is a struggle for me today to sing most times. It is hard to get adequate air to reach certain notes or to get enough air when rests are scarce. At times, I have a dizzy spell. The focus though isn’t my physical limitations, but the righteousness of my Lord. The physical combat, for me, is no reason to stop singing praises to God. I believe He knows my heart and the struggle I endure. I also know without a doubt that my worship is pleasing to Him.

When A Warrior Passes

Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.

You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.

I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.

I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.

Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way.  I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.

The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times.  Angry with the people who brush us off.

It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.

Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.

Regardless of how close you were let yourself cry if you need to.  Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.

 

 

Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

To The Girl With The Bruises

Girls receive the message that they need to be flawless physically which is impossible. They are ashamed too often of bruises, rashes, stride marks, or other physical changes due to things outside of their control. No one should feel ashamed of their body because of their invisible fight. They hide the imperfections at all cost.

To the girl with the bruises from falling too often because your body cannot remain up right, your bruises are beautiful.

To the girl with the bruises from unknown causes, your bruises are beautiful.

To the girl with the bruises from bumping into things because of balance issues your bruises are beautiful.

To the girl with the bruises from a blood disorder, your bruises are beautiful.

To the girl with the bruises from abuse, your bruises are beautiful.

To the girl with the bruises battling her own body and daily fighting for her life, your bruises are beautiful.

Your bruises are a part of you for a few days, weeks, or maybe a season of life. They do not define you or tint your beauty. There is no reason for you to feel ashamed. Your bruises are beautiful because they represent your invisible fight against your body.

They are beautiful because they are proof that you never give up. You have courage, strength, and dedication pushing through the most difficult times. You might need a break or time for a melt down which is okay but you continue moving forward.

Your identity is not rooted in your looks. Your value more than skin deep. Your heart is stunning. You have courage that many people only fantasize about. You are an inspiration and a blessing beyond words. Sweet friend, your bruises are beautiful.

Seriously, I Can’t Hear You

I can’t hear you. Could you please repeat that? No, I did not hear you come in. I am completely serious, though it is hard to believe at twenty-three. I previously blogged at my hearing loss mentioning a couple unstable theories. Shortly after, receiving my HHT diagnosis, I was told I needed my hearing checked. The doctor who relayed the message was skeptical because she had been on my case for a brief amount of time and was unaware that I had issues hearing. To be fair, the doctor who ordered it was never told either. Simply, because it never came up, furthermore, it did not seem relevant

I went through an intense hearing test while I was having no trouble hearing. I found out a few days later that I have extremly mild bilateral hearing loss. However, was not mentioned at the appointment, I am guessing because it is so minor. There isn’t anything to do, but it is a great thing to know.

If you went undiagnosed for any significant amount of time you understand the value of a reason for dictating symptoms. Though there are an overwhelming amount of questions at times without answers, having a name to the monster helps. The name doesn’t not by any means make the road any easier it just makes someone feel validated in their bodies rebellion.

 

Great Spoonie Volgs

YouTube is an interesting place. Allowing for entertainment, vlogging, and education. I never used Youtube much until I went away to college and needed to force myself to rest. Of course,  finding tips for living with a chronic illness and encouragement was a plus.

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Kelly Patricia is one of my favorite YouTubers and a huge inspiration. Kelly has a gift for encouraging others. She also has amazing faith. Kelly has an interesting mix of chronic illnesses and is still partly undiagnosed. Her story is extremely relatable, especially with the struggle of finding decent doctors. Some of her illnesses include IBD, Endometriosis, and Arthritis.

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Lets Talk IBD

Maggie has a great channel featuring Inflammatory Bowel Disease. She has a J-pouch and information on doing feeding tubs as well as coping tips for life with a chronic illness.

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Inflamed and Untamed

Sarah also has IBD and is an excellent advocate. She is blunt. She has battled many surgeries, hospital visits, and flares. She has partnered with the Chrons and Colitis Foundation. She has been on multiple IBD discussion panels and has a lot of knowledge about IBD.