Tag Archives: guest blog

Friday Feelings with Hospital Princess

Hey there, hi there, ho there! Apologies for the radio silence and the delay in posting this week’s Friday Feelings guest post. I’ve had a crazy few weeks which I will explain in due course.

As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.

This week I spoke to Cheyenne from Hospital Princess. The 20-year-old is currently studying in college. Her goal is to become a Christian counsellor and to specialise in chronic and terminal illnesses. Cheyenne suffers from Hypermobile Ehlers Danlos Syndrome, Mast Cell Activation Disorder, Dysautonomia and Gastroparesis. You can find Cheyenne on Facebook, Twitter, Instagram, YouTube and even on Etsy!

Cheyanne

“My name is Cheyanne. I am 20 years old. South Carolina is my is currently home; however, my heart is native to sunny Florida. I am blessedto do life with my family, wonderful partner of four years, and my red-headed smushed faced cat named Weasley. I am a college student at North Greenville University. 

Chances are, I always have a book or Kindle in my hands. Vegan baking for others, despite being tube fed unable to eat, is another enjoyablepastime. Similar to most, social media, binge watching Netflix or Hulu, and technology all consume a large chunk of my leisure time. And I recently transformed my grandma-like hobbies of knitting and sewing into a mini Etsy business selling handmade items.”

So now that we know a little about Cheyanne, let’s have a read of her Friday Feelings entry.

giphy

“Dear Diary,

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. My weekend with chronic illness involves the total opposite of the drunken, wild parties usually experienced by other college twenty-somethings. Alcohol via a J tube is never a practical idea. Instead, my Friday nights are spent with family and close friends playing board games, chatting, binge watching Netflix, or even the odd spur of the moment road trip.

I feel kind of defeated in terms of my illness. Treatment is limited. Since I am already relying on last resort options like tube feedings, TPN (IV Nutrition), and a continuous infusion of IV Benadryl for Mast Cell Disease, it is as if I am perpetually trapped in the ‘what do I do now’ stage. There is hope for better days ahead though.

The future is obscure, clouded with the unknowns of chronic illness.

I have no clue what the future holds, nor will I try to pretend that I do. Any conceivable plan I have had for the future has not resulted in the outcome I ever expected. Overall, I am thankful for each day I have left to continue to pursue God’s will for my life.

Outsiders inevitably have a different perspective towards my illness. The diagnoses are tremendously misunderstood.

Because they are mostly ‘invisible’ illnesses, people neglect to consider how widespread the symptoms actually are.

Only awareness can reduce the stigma and make others recognize the seriousness of Ehlers Danlos Syndrome, Mast Cell Disease, and the remaining comorbid conditions.”

A big thank you to Cheyenne for taking part in our Friday Feelings blog.

 Want to write your own Friday Feeling entry?

Send

A high res photo

A short paragraph about yourself

What illnesses you have

Your diary entry with the following topics in it:

It’s Friday, many people will go out tonight for a few sociable drinks with their friends. What do you do on a typical Friday night?
How are you feeling at this moment about your chronic illness?
How do you feel about the future in regards to your illness?
How do you feel about the way people view your illness?

and links to your blog and social media to evienevin87@yahoo.ie

Be sure to put “Friday Feelings” in the subject bar.

Until tomorrow,

Z.M

x

My Guide to Dysautonomia featured on Irish Dysautonomia Awareness

dysfordummies

Hey, there, hi there, ho there!

This week I guest blogged on Irish Dysautonomia Awareness with my Guide to Dysautonomia. Go check it out!

I’m putting together an e-book of all my guides of conditions relating to invisible illnesses. Want you illness included? Comment below!

Until friday,

Z.M

x

Irish Dysautonomia Awareness

I’m Evie and I come from Cork, Ireland. I’m a 29-year-old mother of two baby zebras. Alex is 7 and Olivia is almost 2. I am diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), Orthostatic Intolerance and Vasovagal Syncope. I first heard of EDS after interviewing a young woman with EDS for the paper I used to work for. Something about this woman’s story stirred something inside me and I became passionate about raising awareness of the condition. A year later I was diagnosed with EDS. When I’m not blogging, looking after my two children or lying in bed ill, I help my husband run our wedding videography business and co-host a radio show on Saturday evenings from 7pm (Irish time) on www.clonlineradio.com.

evie blog

I write about Ehlers Danlos Syndrome an awful lot and with where I am guest posting today, I decided to focus on Dysautonomia. I recently wrote A Simple…

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