My rare disease day instagram challenge summary post

Now I’m not wanting to rehash old blog posts but if I’m honest I can’t actually be arsed to look back at what I’ve posted on previous rare disease days. What I can say is that I attempted this month to throw myself into Rare Disease UK’s Instagram challenge. The aim was to post a photo each day on a theme set by them. Some were difficult, some inappropriate for Nate and us, and other days life just got in the way and I completely forgot all about it.

It seems sensible then to share my insta posts with you on here. They will be screen shots not links as my instagram profile is private. It can be a “rare disease instagram challenge summary” if you like. Yes I’m going with that *quickly renames blog post*

Day 1- A big hello!

Day 3- What I’m up to today (being vented lots from my gastrostomy) 

Nate air swallows in addition to his stomach problems. This results in a huge amount of gas sitting inside of him which we can release by putting a syringe on the end of his extension tube and either drawing the air out, our pulling out the plunger and letting it all bubble through. 

Day 4- Selfie  Sunday 

Day 5- Motivation Monday 

Part of his syndrome means long episodes of being awake...

Day 6- Someone you admire 

Day 7- My night time routine 

Sleep system on ( I’ll try and escape later) 

A kiss from my dog 

Bedtime meds 


A rhythmic story 

Sats probe on my toe so my parents know if I stop breathing due to a seizure or apnoea. 

 

Humidifier, ventilator, sats monitor then oxygen on 


Mask on. Yeah right like I’m keeping this on! 


Overnight top up milk feed for administration through my jejunostomy port



Day 8- Something green 

Nate struggles to move food to the back of his throat for swallowing and so he received a gastrostomy. However Nate would retch and vomit up the formulas given through it due to reflux. We try (as much as possible) to give him normal blended food through his gastrostomy instead which he tolerates significantly better. 

Day 11- My favourite film 

Day 12- Something that makes me happy 

Day 13- My guilty pleasure ( me Rachel) 

Day 14- Love 

 

Day 15- Throwback Thursday 

Day 17- My rare disease 

Day 19- My favourite place- the high seas 



Day 20- What’s on my plate? 

Day 21- Something that represents me 

Day 26- Funky footwear 

Looking through these posts they are actually quite a good short short version of our rare disease lives. I say “our” as it impacts the whole family. 

I mean it’s not ALL doom and gloom which is why it’s lovely to share happy photos of Nate in my blog, and um Facebook, and Instagram, and sometimes Twitter too. Ok maybe I share a lot, but he’s been so poorly and wasn’t expected to still be here so I reckon I get a free pass on the oversharing thing.

The medical stuff in isolation can seem intimidating which is why people ( I’m looking at you medical and health professionals) need to see Nate as a whole person- his likes and dislikes, his cheeky personality, that his life has worth, has value. He is not solely someone with a rare disease, although that plays a huge part in his life, he is a young person with a complex set of needs who deserves to be supported by medics, the community and society in general. 

He is not a burden nor an expense. 

It’s worth having a chat to him, he can’t verbalise a reply but if you are lucky you will receive a huge roar and some gentle taps.