This month is NERVEmber. A month dedicated to raising awareness for Complex Regional Pain Syndrome.
The more people that are aware of CRPS the better. The more understanding we can create in the medical and non-medical worlds would be amazing.
When you think of hell, you think of fire and brimstone. CRPS is like living in hell, every single minute of every single day. It is relentless. It does not discriminate. It doesn’t care if you are young or old, if you are starting your life or living your life. It doesn’t care if you are planning your future. It is a lasting tornado leaving a trail of destruction in the lives of the people who live with it, and those around them.
Constantly defending yourself to people gets old extremely quickly. Some days you can do something, but other days you can not do it, let alone function.
I got my new wheelchair this month, after a few disasters and near misses with the power assist on my manual chair. I have gone for a fully powered chair this time. Trying to navigate our home town with the angled footpaths, old concrete, pavers, dirt and wheelchair eating cracks was becoming really difficult. The power chair gives me the ability to be more independent. I can pop up lips, cruise over cracks, and handle the angled paths without issue. The vibration is also a lot less then it was in my manual chair. I haven’t given up on that though. Its handy to get in and out of the car quickly and gives me some good upper body exercise. The new chair is orange so it’s really well timed!
I went on the grass! It has been so long since I have been able to go out on the lawn safely. I almost burst into tears. Not because of pain and the bouncing over the grass… but because I was on the grass. I was in a place that I had not been for a long time. To some it is insignificant and they will shake their heads at me. But when for so long you haven’t been able to do simple things, these simple things become epic accomplishments.
The only downside to a new chair, is trying to explain it to some people. Some are great and have encouraged me from the beginning to go down this path, but my stubbornness got in the way. With others, it’s not this easy. They don’t understand why I need to use a wheelchair. I dont think they understand about CRPS and the effect it has on my life. I constantly try to explain it. I’m constantly defending myself. After talking with them I begin to question my choices. They make me feel weak and ashamed. They make me feel guilty for things that I cannot do, and things that I can with modifications. Sometimes I dont think they want to understand, and it hurts. Talking to them is like trying to talk under water. No matter how hard you try to get the words out, they become muffled by the water. All you seem to do is let out lots and lots of bubbles. No matter how loud you scream, they dont hear you.
This is why November is such an important month for CRPS. Awareness is key. Sharing our experiences in the hope we can create understanding and help others in our situation. It’s our chance to escape from the shadows and shout it from the rooftops. Putting ourselves out there to show that CRPS is real. It may be an invisible illness but we are living proof. Knowledge is power! If we can create more awareness, maybe more research can be funded for alternative treatments and one day a cure! This month I wear orange for me, and for my fellow CRPS warriors.
For more information about CRPS and to see how Australia lit up orange in support of ‘Colour the World Orange Day’, please check out https://www.facebook.com/CRPSnetworkAustralia/
#NERVEmber #CRPS #CRPSreallygetsonmynerves #colourtheworldorange