So, it's CRPS awareness month, who knew? Not me and I've been challenged by it (Complex Regional Pain Syndrome) for over 10 years, I found out via a retweet, thanks @lisafaulkner. I feel compelled to help raise awareness.
I had a minor operation when I was 24, at the time I was working full time and reading English full time at Brunel. I was teaching English to foreign students part time and I was also a part time Potter making and selling items made with love, for fun. My time was filled with socialising, horse riding, dancing, yoga, cooking, gardening and much more. I liked being alive and doing lots.
In January 2001, I had an operation to remove a ganglion from my right wrist from then on my life hasn't been the same. For the first year the pain was so over whelming I was unable to use my right hand or arm at all. So no driving, no writing, no cutting up my own food. My pain quickly spread, it affects my entire body especially my arms, right hand, back and legs. I was advised to limit my movement and accept a wheelchair. Thankfully I couldn't accept my situation and fought to find ways to cope with the pain. Over time and with a good deal or stubborn determination I have adjusted to living in pain. The pain in my hands when I use them, as I am now to type, is excrutiating but I am now to a certain extent acclimatised to it. There are still so many days when I am unable to do much but when I feel strong enough I do.
However, I am no longer able to enjoy most of the activities I once loved, I miss working, I miss teaching, I miss the feel of a lump of clay and being able to transform it and I really miss being able to brush my hair without agonising spasms.I spend all day every day in constant chronic pain that is punctuated by extremely painful spasms. The slightest breeze or touch on my skin gives a burning sensation, this pain is referred to allodynia and affects many people who suffer with CRPS. Other than having type 2 CRPS and dealing with sleep deprivation and allodynia, I also get frequent migraines, sickness and dizzy spells. CRPS really is the gift the keeps on giving. I can now manage quite well, if I am able to get a couple of hours sleep a night but on the nights I don't, it's a struggle to cope and stay positive.
The primary condition and all of the secondary conditions it triggers are a relatively small part of the issues CRPS sufferers face. Loss of independance, limited choices, adjusting to disability, grieving for the life and the you that you've lost are massive obstacles. For me, my confidence took a severe nose dive, I'd never really thought about my self esteem and what drove me, I just enjoyed each moment and made the most of opportunities. I am now so grateful that I lived for the moment and seized opportunities when I had them.
Pain of this nature can often be hard for other people to see or understand, it's my duty to help you understand. Most days I feel like I'm in an invisible cage, with bars made of pain, nobody sees this prison, it can be so lonely, it is devastating. Imagine being forced to carry your cage whilst taking part in a perpetual endurance contest and you get a glimpse of the challenge. But it's a race you can never win, survival is your trophy and you must learn to cheer yourself on, whilst feeling utterly drained and stuck in the pain prison.
The weird part is you have days where the lack of sympathy is a blessing, I don't want to be seen as "poor Nadia" and then days where I feel like I deserve a prize for surviving. The sad truth is on days when you are able to cope, people around you enjoy the break and you're worst days you get pain blindness. Unlike other achievements in life like working, competeing, creating and so on, we never get a minute off, we get no reward or incentive to continue. We must know our strengths and use them every day, it is a valuable life lesson but at a high cost.
I am lucky, I am strong and I never forget things could be so much worse. I have an amazing family made up of my beautiful sister and cousin, my huband, inlaws and lots of valued friends. We have a lovely house and garden and two gorgeous furry friends. My husband has been amazing and has done lots of research. He frequently finds new treatments for me to try, his love and support give me strength to keep going and his clowning around is a joy.
I must mention how tough it is for our loved ones to watch us endure this CRPS challenge. They share out frustrations and feel helpless. They have days where they don't want to share, want to block it out, have their own stuff going on and so much guilt. Guilt for not being able to help, for being tired and not wanting to hear it and for some even guilt for being the healthy one. When friends or family have their own stuff going on, I relish the opportunity for balance. I get to just be me and offer my help.
It's not easy, CRPS and all that is entails is hard core. I now listen with different ears, speak from a new perspective, CRPS has changed my life. I have CRPS but am not a victim, I am a survivor. My life has changed but it isn't all doom and gloom I do remain a positive person and most days I find reasons to be cheerful. I enjoy today and look forward to the future. I am hopeful about finding a route to financial independance, about finding a creative outlet not thrwarted by pain and about helping others cope with their pain. Thanks for reading!
