Don’t tell me I talk about my illness too much. Every movement. Every breath. Is a reminder that I’m not ok. That I may never succeed.That I can’t do things that normal people do. That everyday is a struggle. Never ever tell me I talk about it too much.

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#ChristmasinJuly #cindersbathbom #vaping #ultimaterelaxation #spoonie #chronicinflammation #chronicallyliving #chronicpain #nervepain #fibromyalgia? #rsd? #CRPS? #lushbath #lush #nervepain there is a video on my YouTube channel of me putting the bath bomb in the water if you’d like to check it out link to my channel in my bio above I will also put the link to the video in the comments below 😎✌🏻️😄

#NO Shame Day

I’ve always tried not being ashamed about being disabled, but it’s a lot easier said than done. So it’s always good to have a reminder to keep being fabulous and that disability can become part of your identity. I have Complex Regional Pain Syndrome, also known as Reflex Sympathetic Dystrophy, Obsessive Compulsive Disorder (with the side benefit of completely random panic attacks), asthma, and I’m also on the spectrum as a fabulous aspie. 

I have never loved myself more in my life, than I do now. Learning to accept disability as part of my identity has improved my life and self-love so much.


Image description:
First row across
Pic1: Selfie of me wearing my rainbow striped vogmask. Used during winter to keep my asthma at bay. Pic2: A gluten-free vegan round cake with the words Happy Cripversary! written on it. Pic3: Whole body pic of me sitting in my chair wearing my camo jacket and hot pink leggings.

Second row across
Pic1: Pic of my hand holding a regular days worth of pills (9 total). Pic2: Picture of my hand stimming with a plastic flexing ball, and wearing my chewigem bracelet. Pic3: Picture of my hot pink KT tape. 

Third row across
Pic 1: Me wrapped up in winter clothes clutching my Toothless from my Build a Bear experience. Pic 2: A picture of Lush body bars, bath bombs, and shampoo bar. Pic 3: A picture of all my medications, from my nebulizer tube, ketamine cream, doterra’s deep blue rub, vogmask, inhaler, lemon essential oil, tiger balm, lidoderm, and all my pills. 

It's CRPS Day! November 5, 2014.

CRPS stands for Complex Regional Pain Syndrome; a name that’s more commonly used to group together a few different varieties of the condition.

Type 1, formerly known as Reflex Sympathetic Dystrophy (rsd), and usually develops after a soft tissue injury, or some kind of mild trauma or injury, even though the nerves weren’t physically damaged.

Type 2, formerly known as Causalgia, and develops after nerves have been damaged.

There are also lots of other names floating around, such as Reflex Neurovascular Dystrophy, Sudeck’s Atrophy, Amplified Musculoskeletal Pain Syndrome, and most likely more.

The most common symptom is pain, and lots of it. Usually the most commonly known symptom, and one that is frequently used to diagnose is the presence of burning pain that will not desist no matter what you try. 

But, at least in my experience, this isn’t always the main way that CRPS can present. There are so many other different ways it can present; it’s very individualistic.

It can ache deep down in your bones, it can feel like you’re being stabbed repeatedly with a sharp knife, you can get pins and needles, numbness, it can feel like someone’s clawing and tearing your muscle tissue from your body. You can have muscle spasms so bad that you can’t move because your muscles are so tight and rigid that they feel like there are rocks underneath your skin instead. You can feel like your skin is on fire, to the point where you can’t even touch your own skin, and you can’t even handle the gentle breeze from a ceiling fan on low because it hurts, it burns. The pain can be all-consuming during intense flare ups; you can’t focus, you can’t think, you can’t remember anything before the pain and you can’t even begin to imagine the future because it feels like there is literally nothing else in the entire world but the agony you’re feeling. This is only a small glimpse into crps; it seeps into and affects every part of your life. Because of the never ending pain I had to quit my job, I had to drop out of college. I’ve lost a lot of friends,I’ve had to give up on my dreams of having a career in theatre, and I’ve had to give up on moving out of my parents’ house. My depression and anxiety are worse than ever before, and I’m lonely a lot of the time because I don’t get out much anymore. Even something as simple as getting dressed, turning a doorknob, and using a spoon to eat a bowl of cereal can be excruciating. It really does seep into every nook and cranny of your life, no matter how hard you try to keep it from doing so.  

There are lots of different things that can affect how much pain you’re in; how much sleep you got, the quality of sleep, the weather, humidity and pressure changes, any and every kind of stress, the seasons changing, if you did too much the day before, if you didn’t do enough the day before. And just because it can, it’ll flare up for no absolutely reason at all. 

CRPS isn’t very widely known; it took me three years, and six different specialists from all around my province before I was finally diagnosed. It felt like an incredibly long time, but there are people who have been suffering without a diagnosis for far longer. A proper diagnosis isn’t the holy grail, but when you’ve been living in pain for so long, it feels like a relief, a validation of all your suffering, that you were right and it wasn’t just in your head (as many doctors have said). It can help you get on a better path. You can learn about it, do research for treatments and new theories, you can talk to other people who have it and finally find people who really understand what you’ve been going through.

There’s currently no cure, only various forms of symptom management. There are medications, creams, in and out patient procedures, surgeries, and some people have even gone as far as amputation to try and rid themselves of the pain. Physiotherapy, massage, and acupuncture are also ways to help CRPS. There are treatments out there that can help manage the pain and associated symptoms; you need to find a good doctor, and come up with a plan together that works best for you. 

We need to boost awareness. We need to talk about it, and support each other. We need to keep funding research!

Here is a link to make a donation to a Canadian non-profit: http://www.rsdcanada.org/parc/english/parc/donations.htm

Here’s a link to donate to RSD Hope (an American site): http://www.rsdhope.org/store/c3/Donations.html

And for anyone who lives close to NYC, a CRPS Institute has been opened in the city: http://www.crpsinstitute.com/

Ugh.

I guess the worst part about being chronically ill is that you loose everything you ever really loved and loved about yourself. The people you loved and cherished so dearly are now nowhere to be found. The happiness you once had is now hard to feel, because you feel so completely awfully all the time. The patience you admired about yourself is unattainable, because of the pain. The intelligence you once were proud of and wanted to constantly grow is dwindling, because you struggle seeing and concentrating. There are so many many things that have gone away and disappeared, so far out of reach that it hurts. The worst of those would be my determination to have a normal, successful future, because I know it just isn’t possible. I’ve found myself with absolutely no hope, stuck in this present time of pain.

3

Three pics of me trying to look adorable today. Top left close up of my face. I shaved half my head again! Other two pics are full bodied pics with me in my chair, wearing purple pants, knee high combat boots, a gray sweater and my silver and green Slytherin scarf. 

My RSD is acting up a bit because I overdid it yesterday but I don’t care and I’m wearing what I want regardless.