Change hope and uncertainty are scary things that come up a lot during life as a chronically ill person. So let’s talk about it.
For the last 4 years I’ve been dealing with something called adrenal insufficiency caused by my steroids. It all started with increasing my immunosuppressants as I was hitting puberty. The Azothioprine increase gave me severe anemia, so I had to swap to Mycophenolate. These drugs help me manage my autoimmune disease Neuromyelitis Optica, without them… Continue reading My Adrenal Insufficency
Spoonie Essentials There’s so many smal things in my daily life that help me so much. It’s taken a lot to find these tools and I’m so glad I have them now! So here’s the things which help me! Electric Heating Blanket I have had an electric blanket for a few years now and it’s… Continue reading My Spoonie Essentials
COMPACTCATH review I was recently sent some free catheters to try & review. The brand is called compact cath and they make well, compact catheters. These catheters are different to other designs I’ve seen since they come in this kind of disc shaped spiral which makes it super small and flat in your bag or… Continue reading Review: COMPACTCATH
As someone who is in bed and pretty useless most of the time, I’ve become rather addicted to podcasts. I love hearing people’s stories and they’re a great distraction.
My fear of flare ups Chronic pain is horrible. Chronic means; something negative which is long lasting. My pain is complex, I have multiple kinds all over my body. The chronic pain started when I was 10 ish due to my nerve damage from Neuromyelitis Optica. I was on gabapentin to manage it - which… Continue reading Flarophobia
Yesterday was suicide prevention day, I wanted to write but I didn’t really feel up to it. Since this is an issue everyday, I will write today. Within the chronic illness community it’s very common to feel suicidal. Usually the thought process is that we don’t want to live THIS WAY. If we could be… Continue reading Better Days Ahead | Suicide Prevention
In this society where people’s worth constructed and not just inherent, it’s so easy to feel like a failure. If you can’t work, can’t study then what is your worth based on? In my opinion so much more. Sure it’s great to contribute to the world, keep yourself busy and whatever, but are you happy?… Continue reading Spoonie, you are enough!
I wrote this a while ago, I feel like it’s a good representation of where my mind goes on my worst of days
This is my brother Dylan.