CRPS a Chronic Warrior

CRPS, health, travel, CRPS journey

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Please don’t be offended for me

Something that happens in the disabled community..... able bodied people get offended on our behalf and mostly over things that aren’t actually offensive.

This week I bring you “The Suicide Disease” . Very recently on the forums, an able bodied person got offended that Fox News refered to CRPS as the suicide disease. This person thought it was disgusting and had a rant about it. BUT, CRPS is called the suicide disease and many of us in the community refer to it as such.

Is it sad? Yes. But it’s the nature of the beast. CRPS is so severe that many sufferers consider at one point or another taking their life. Sometimes it’s just a what if thought, and other times it’s a little more.

So next time you think something is wrong, maybe ask us first. It would save us a lot of pain.

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Why I don’t support the ice bucket challenge

The ice bucket challenge has been a big thing over the years, and in the CRPS community it still seems to be going strong. But.... I don’t support it. The reason for the challenge is great, to help bring awareness and give those undergoing the challenge a brief insight into a little of the daily pain we feel. BUT did you know that submerging your limb in ice like that can actually cause CRPS. it just takes one bad experience with the ice to cause some nerve damage there and set off a life long incurable disability. That pain you feel when you submerge your hand in the ice is real, your body is telling you it hurts at that initial time for a reason.

Be careful out there when submerging your limbs into a bucket of ice, but please keep up the awareness.

Xoxo

A hidden warrior.

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You aren’t the girl I loved

Over the weekend, someone from my past informed me that I am not the girl they once loved. And it isn’t because I have grown into a woman and am now more head strong than my teenage years, but it’s because I was referred to as broken. ““You aren’t the girl I fell in love with, what happened to you? You are so sick and broken now”. I wanted to cry right then and there, but I wasn’t going to give anyone that satisfaction, or behave like the broken person they think I am. So I kept quiet and just said ““I don’t know”. It stuck with me for a few minutes and then I realised, I don’t need the love of anyone from my past, I have a very loving partner who loves me despite how broken or unbroken I might be, I have family that loves me. As long as the people that matter are the ones that love me and don’t see me as “broken” the opinions of others do not matter. Does it sting to have those words said to you? Hell yes it does, and it makes me miss the person I was before CRPS came into my life. It hurts that people look at you as sick and broken and with such pity and in a way I felt as though there was an image of disgust with me ““not being that girl” anymore. It hurts deep down to the core. But CRPS has shown me who is real and who is true, it has shown me how strong and resilient I truly am. I have learnt what things in life are important, what is worth my fight and what isn’t. And the main thing out of this is, I don’t care if I’m not the girl a stranger to me now once fell in love with, because I am the girl that I myself have fallen in love with, and no one can take that away from me,

Xoxo

Hidden warrior

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I have Complex Regional Pain Syndrome

I have Complex Regional Pain Syndrome (CRPS) and it is nothing to be ashamed of. It is part of who I am. It is the most painful disorder known to science as we speak. CRPS is more painful than Child birth, cancer, back pain, migraines, fibromyalgia, fractures, breaks.... you name is and there is nothing above it right now. I have had CRPS for 18years, it was not long before my 14th Birthday when I got it. And by now, I’m really good at hiding it and pretending I’m ok, especially when I’m not ok. I lost the use of my upper body, predominantly the left side of my upper body, I had to work hard to learn to somewhat re use my arms. It may look normal to me when I use my arms, but to me it is agonising and takes a lot of effort. I can’t really grab things because I drop them... A LOT. I face a lot of comments: You have gained weight You are lucky to get to be home all the time You are living the life You need to try harder Why aren’t you working What do you do with all your time It can’t be that bad At least you aren’t dying At least it isn’t (insert whatever it is here) You’re lazy You don’t look sick

What a lot of people don’t know is, I apply for jobs often and get rejected because I am physically disabled, I study and have been studying for the past 3years, I spend almost every week day at some form of medical appointment, and I do not have the luxurious life of sitting at home all day pain free just enjoying my life.

CRPS is also called the suicide disease because it is so painful, many sufferers believe suicide is their only way out.

I have tried countless treatments and surgeries and even travel overseas for treatment.

CRPS is also more than just agonising Pain, it comes with muscle deterioration, memory loss, hair falling out, loss of movement, lesions, anxiety, depression. The list goes on. Something as simple as a slight breeze or an item of clothing touching me can send me into agonising Pain and leave me in a flare. Someone even just touching me or bumping into me can cause this pain too. Going out for a couple of hours can cause such bad fatigue, it can often take days to recover.

I might look fine, or healthy or seem like I’m “living the life” ...... but I’m not. I’m just really damn good at hiding it and would give anything to even live a day as a normal person.

This view people have of people with invisible illness needs to stop and people need to really think about what they say before they go ahead and say it. Your words do affect people, even if you think it’s just a joke. To us this is life.

(Found on Facebook)

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CRPS a Chronic Warrior

There is no easy way to say this.... but CRPS is a bitch. I was a young teen when I first got this beast, also known as the suicide disease. I was an athlete.... a good athlete, I was going places. CRPS made sure that wouldn’t happen though, despite my years of trying to battle it. I became an athlete turned model, I was in remission.... but the beast came back in ways so many couldn’t even imagine, yet so many unfortunately know too well. But, I am a warrior, a warrior in my own rights. I fight my body every day, I do the unimaginable and still force myself to strive towards a fit lifestyle. I lost so much, but I also gained things I never imagined I would. In the coming days, weeks, months, years. I’m going to share my story and my journey with you all. Stay tuned.

Xoxo a hidden warrior