Read my story about being a young person with a chronic illness. Living with Neuromyelitis Optica - a rare autoimmune disease.
Even though I’m blind I’ve always loved doing art, but now sitting up hurts too much to do art. I miss doing it so much!
would like to bring your attention to an issue that exists in a country, that generally many people do not consider as being a place where bad things happen. That country is Canada. The issue? The missing and murdered First Nations women who have disappeared on what is now called “the Highway of tears”.
“I can see but I can’t SEE” In today blog post I explain what my vision is like.
Showering with a chronicnillness is one of the hardest tasks we don it’s just so exhausting. But it’s mandatory. Here’s some tips to help you.
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
I would like to thank candice for sharing my story. I feel like it really depicts who I am! You can read more stories like mine on her blog.
Niamh is a sixteen-year-old young lady who has Neuromyelitis Optica. This is an autoimmune disease which effects a person’s immune system, spinal cord and optic nerves. Resulting in paralysis, blindness and cognitive impairment. Neuromyelitis Optica it usually affects middle-aged women, however, Niamh (2018) says “I’m rarer than rare and got it as a child.” (Niamh, 2018) There is no cure for Neuromyelitis Optica but it is manageable and it’s not contagious, “It’s just in me”. (Niamh, 2018)
The biggest barrier which Niamh has experience is her health. She says it’s not the stigma, it is her own health which limits her. “People says ‘my disease doesn’t define me’ and ‘don’t let it limit you’ but that’s not realistic” says Niamh (2018) In reality, her condition does in fact, does limit her. Niamh is passionate about changing the world, unfortunately she can’t because she becomes so fatigued that she is bed…
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On this journey you will loose people. But those who staybare so valuable.