I ask my friends, please help me to share the awareness of CRPS. Everyone happily shares on Cancer awareness posts, did the Ice Challenge for MND Awareness so lets get CRPS getting a share too - because it sure does need more awareness!!!
On the McGill Pain Scale it scores 42/50 highest ranking condition - and they arent wrong there! I have torn off casts off of my leg in frustration trying to stop the burning stabbing pain, it is relentless!!! If you want to know more, there is plenty of information easily googled :) I am sure most of you have seen the photos of my discoloured, swollen leg over the past 2.5yrs, I'm sure there will be more to come. Here are some informative links below!
I try to not write a lot up online these, because I get too many people telling me I complain too much, I post too many "leg photos", I'm too negative and they dont want to know about it...I'm not sorry I write about it, its my journey through it and I like to share the awareness of this horrid disease! I dont think you would ever complain to someone with cancer that you dont like them sharing, so think twice before you say things...even to another person, because guess what, it makes its way back to me!!! If you dont like it, thats quite fine with me, but please dont complain about it, just move on and ignore it. One day it may be YOU or someone you love that is diagnosed with this, awareness so helps, an early diagnosis is so essential with this disease!!! I have had many message me asking questions, concerned about friends or family whom have similar symptoms, when they have no answers from the doctors over pain and such symptoms, it is good to know about. I didnt get an early diagnosis, because no one knew about it and Doctors in Aust are still learning about it, some still dont know (I have heard A LOT of different untrue versions of what it is lol) and because of that, I missed a crucial period where I could have been getting help and working towards a remission period!!! So many friends with CRPS have sadly all the same issue, so we are trying to spread awareness about it to help more people to get earlier diagnoses and onto quicker help!!!
Yes, CRPS is a Chronic Pain condition, that means everyday, I do live in pain. I am thankful for being in a country where I can get access to medications to help deal with this pain. Unfortunately the medications are very strong and often cause me to be quite out of it and bed is the safest place to be. I get flare ups with no warning, I can be having an okay day and next minute stuck in bed, in too much pain to move, my body too exhausted to do anything but rest...my bed and I are well acquainted friends :P Chronic Pain is much more different to "acute pain" - like the pain I suffered through when I originally broke my leg. Chronic Pain is relentless and it is extremely exhausting! No matter how much rest you get, you are always tired!
It also means, I dont live the normal life I want to, like someone my age should. I am SORRY when I have to cancel something last minute, when I cannot do something, when I cant do what I want to do, but when it might seem disappointing to someone that Ive pulled out last minute, I am at home in bed suffering, something I cannot control. I get very guilty of this, because I feel selfish for having to look after myself before others, whereas I have always put others before my own needs. I overdo things and I am SLOWLY learning, that overdoing it is actually putting me in a worse situation, so I have to start making even more bigger changes... (PLEASE READ NEXT BLOG FOR MORE ON THIS)
Some days are good, some days are bad, I am thankful for the better days! Days where I can get out of bed, catch up on things, get outside, take my camera out shooting and enjoy life. I am still in pain, please dont think it just "stops" on a good day, however, I am in a better headspace to deal with it and the medications actually help to take off the edge for a while. And if I go from a good day, to a bad day halfway through the day, trust me you will know!!! Biggest thing to notice - I go quiet (yep, very noticeable with me hahaha), I go pale and "grey" in colour, my leg jerks around a bit and I look extremely uncomfortable...bed and stronger meds are my friends. I cannot control these flare ups nor guess when they come on strongly, its very unpredictable.
Most of you know I dont sleep well, I didnt before my CRPS, but that was from an overactive brain...these days I dont have any issues with that, my brain is so exhausted it tries to sleep, however I am too uncomfortable to do so. I now have the crps progressing into my lower back (sciatica issues) and both my arms. My hands swell up and shoot pains up my arms into my shoulders. They also seize up and go dead numb like a deadweight and I cannot move them, they seize mid spasm...this is freaking scary :( I have quite a lot of areas with super hypersensitivity, a simple bump or brush past can make me scream in pain...its umm interesting finding which parts of the body want to behave or not behave each day lol! It is challenging me thats for sure, I am sure learning a lot about my body!!! Due to the spreading of the crps pain, finding a comfortable position to sleep is incredibly difficult! Nothing can touch my bad leg, it overhangs my bed or rest on the inside of the leg on a pillow (outter side of my leg is the worst spot). Due to the lower back sciatica problems, I have pillows to go under my hips and my blanket to make it comfier otherwise, then I have to find comfortable positions for my arms to go without sending my whole body in pins and needles and pain spasms...and I'm a tummy sleeper, have been since I was born...which means I'm lying on my delicate ribcage, which gets really sensitive and sore, so more pillows to help stop that pain...yep and once I find a comfortable spot, I try to meditate to calm down my body to sleep, if no success, I will read (books on my phone) to try and nod off...sometimes I am lucky, I sleep okay and get a few good hours...sadly though, I do not sleep deeply and even with 10hours sleep, I wake up exhausted. I often have nightmares from medications and "halluncination" dreams where I feel my pain while dreaming light sleeping, its freaking scary!!! The meds make it hard for me to wake up too, I am usually groggy for the first few hours "awake" after sleeping and takes me a few hours to be able to get out of bed. And yes you will find me on chat on FB at ungodly hours, usually I am talking to another chronic pain friend, thank god for good online communication!
To my friends and family,THANK YOU for all being there for me, putting up with me, adapting for me, praying for me and everything else you all do, I know I dont say it enough. I know a lot of you have known me for many years or my whole life, you dont understand how I can go from a healthy, sports crazed person to what I am today, and trust me, that makes me cry more than you understand. However, I battle each day to find peace and release the anger about this and the CRPS, I am moving forward towards finding more peace, but I still get extremely, extremely frustrated by it. It is hard to accept and deal with, however I would ask of just one request, could you please help in sharing the awareness about this disease! Over the month of November, I will be adding information or pictures like the ones in this blog, to my facebook page. On Monday, its November 3rd, its CRPS Day!! I will be wearing my CRPS shirt and orange ribbon, please help me in sharing awareness, by wearing orange, even just an orange ribbon will do! You can then share with others that the orange is for CRPS, a bad chronic nerve pain disease, you never know you might just help someone out!!! Thank you to you all!!
I am writing another blog currently, this one took me over 5 hours (bad brain fog day!!)...the next one is a personal post, please be sure to keep an eye out for it in the next two days xx Kate