Like any chronic illness, Complex Regional Pain Syndrome (CRPS), affects everyone it touches. From the person who actually has the disorder, to immediate family members, other relatives, close friends and acquaintances.
Like concentric ripples in the water when you drop a pebble into it, the closer you are to the person with CRPS, the stronger the affect is on you.
When I first had the accident that caused my CRPS 17½ years ago I was a single Mum to 3, very busy, school aged children. 2 girls aged 14 and 10 and 1 boy, aged 12. Our lifestyle pre-accident revolved around sport, a LOT of sport! Before school sport, after school sport, weekend sport and coaching sport. We were only ever home to sleep!
My lifestyle post-accident was completely sedentary, other than to go to medical appointments. My worst positions were sitting or lying flat. I took my bed out of my room and spent all of my time in a hammock instead. My son, who was in an elite training program, was also in the car accident and, due to his injuries, was now unable to continue and was becoming depressed. My girls still had their sports but didn’t have a mother capable of getting them there.
They had an increasingly irritable parent who was fairly absent for the first 8 months. I kept setting deadlines to be walking, and those deadlines would come and go, and I would set a new one and ‘fail’ again – over and over.
Somehow my kids got themselves to school and sports with the help of parents of their friends. They became my carers. They looked after each other. They learnt to cook and took it in turns. They made their own lunches. They also got really good at predicting my mood based on my pain levels. ‘Is mum in so much pain that she will yell at me if I ask for something?’ Or just enough pain that she will say, “Yes, WHATEVER!’
Having a chronic illness sorts out your REAL friends, really quickly. Real friends really are the family that you choose yourself! When someone asks ’How are you?’, very few people actually want the truth, very few people with a chronic illness actually tell the truth, and only a true friend can tell when you are not really okay.
Real friends are the people that stick by you. That check in if you have been a bit quiet. That are there for your kids, whenever they need them. That will make sure you have something in the fridge to eat or will pick up your medications if you are having a pain flare.
Over the years I worried about the effect CRPS was having on my kids. Thankfully I realised at around 8 – 10 months post-accident that life was passing me by and I could choose to be a part of it or not, so I accepted the advice I was given to use a wheelchair. I had missed the best part of a year of my children’s school lives, assemblies, sports days etc.
I worried about the times when I was irritable and frustrated or angry and my kids took the brunt of my mood. I worried about the times I was depressed and how that affected them. I worried about them missing out on a lot because finances were tight. I worried about everything they had to miss out on because I was in pain or simply because we had no way of getting to places as my only mode of transport was an electric wheelchair! Not a car.
Thankfully my kids turned into 3 of the most empathetic, caring, considerate adults that I am so very proud of. I am now the grandmother of an amazing young boy, who has always known to be careful of my legs and feet and to be quiet when I am sore.
And so, just when you think the ripples of the effect on family are getting smoother a larger pebble is thrown in my pond. A devastating blow to remind me that this beast called Complex Regional Pain Syndrome likes to be in control.
My youngest daughter has just been diagnosed with CRPS. I would do anything to take this from her. Despite having tried to hide the worst of how I felt over the years from my children, she has grown up watching my CRPS go from 1 foot to full body plus internal organs. How scared she must be. How much do I feel that I, my genes, have failed her? A ridiculous notion, I know.
My mother, some years ago complained of severe pain when in a cast from a broken wrist. I insisted she get referred to a pain clinic for suspected CRPS where she received the appropriate early treatment. That resulted in a partial remission and she now only suffers from mild CRPS from time to time. Do I blame her for my disease? Not in the slightest! That is stupid.
So why do I feel bad about my daughter?
Because I am scared silly for her. Because I want the same outcome for her. She is my baby (okay, she’s 25, but still). We have caught it early. We have the best pain specialist we could possibly ask for. I want her to beat this. That’s not asking too much, is it?
Co-Founder: CRPS Network Australia