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. ❤

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Bittersweet Birthday

I had overheard people saying that old age caused pain. So, by the time I had chronic pain, about nine years old I thought it was I just a part of the aging process. At the same time, I wondered how everyone else was coping so well with the pain and mine was taking over. I felt extremely guilty for missing an excessive amount of school. It took some time for me to understand that children should not be in intense pain or pain all the time. Those people were indeed referring to elderly people. Who knew?

From a fairly young age, I associated growing up with having more pain. I am thankful to be alive. Especially in light of a handful of times, it was questionable if I would make it. Even so, my birthday is a little difficult emotionally.

It’s not just the physical pain. I tend to feel more isolated around my birthday. This is the time I notice that indeed I am not a typical young adult. The time I need to grieve the things I can no longer do. Time to grieve all I am missing out on.

The social clock is ticking obnoxiously. I can just hear people saying, “She is nearly twenty-three years old. She should be out on her own, not living at home.” It is difficult for me to view my accomplishments. My brain finds it natural to highlight the struggles during certain seasons. Society, as we know, has too many unneeded options. I have learned to allow comments to roll off my back, but sometimes it has a way of getting under my skin.

Furthermore, I have found that the older I have become, my memory has faded. The brain fog is thick. I was devastated when this began to happen. Heartbroken as the memories of my furry friend slipped out of my grip.

It is okay to struggle with holidays or your birthday as someone with a chronic illness. It is okay to have fears. It is okay to not be okay. As long as you do not give up. Even when you don’t feel like it, hold onto hope. Crawl forward, even if you are slower than a snail, you are still making progress.

Even though it is emotional, there is a part of me that looks forward to my birthday. I am deeply blessed to have people in my life who support me and love me. I am thankful for days of simple joy and laughter. The Lord has allowed me to thrive in the midst of great adversity.

“For You shaped me, inside and outYou knitted me together in my mother’s womb long before I took my first breath. I will offer You my grateful heart, for I am Your unique creation, filled with wonder and awe.You have approached even the smallest details with excellence; Your works are wonderful, I carry this knowledge deep within my soul. You see all things; nothing about me was hidden from You. As I took shape in secret, carefully crafted in the heart of the earth before I was born from its womb.You see all things; You saw me growing, changing in my mother’s womb; Every detail of my life was already written in Your book;
You established the length of my life before I ever tasted the sweetness of it. Your thoughts and plans are treasures to me, O God! I cherish each and every one of them! How grand in scope! How many in number!” Psalm 139:13-17 The Voice Translation