By Naomi Creek
As a parent, you naturally want the best life for your child. But just say, out of the blue, they developed a disease that would affect them for the rest of their life?
This is what happened to me, when I was a healthy 10-year old girl, then one day started getting sore feet and legs. These unusual symptoms for such a fit and flexible girl started getting in the way of my active life. For a number of years, the doctors dismissed my symptoms as ‘growing pains’, but they gradually became more frequent, until one day, I simply couldn’t stand up. My legs wouldn’t hold me.
I spent a week in hospital while they did lots of blood tests, x-rays and examinations before coming away with my diagnosis of Rheumatoid Arthritis (RA). I was put on a regime of medications to help with the inflammation and pain and was told that I may grow out of it.
As I was so young, I really didn’t understand what I had and how it would end up shaping my life. It was also difficult for my family and friends to understand, as it seemed uncommon for a child to have arthritis. It was 1982 after all, with no internet or information readily available about how to cope or manage with such an illness. So, I struggled through high school with a great deal of pain and uncertainty but with the optimism that one day it would go away.
Unfortunately, that was not the case for me and now 36 years on, I still live with the condition. I’ve had a number of joint replacements on both knees and hips and my shoulder. These have given me back my mobility, however as my condition affects almost every joint in my body, I still need to take medications to prevent the RA from progressing and damaging my joints, and to help with daily pain. I also live a very healthy lifestyle of eating well, keeping fit with yoga and reducing stress, to keep my body in the best state possible.
Today, it’s rare for anyone to have undergone double knee and hip replacements by the age of 25, as I did. Most people diagnosed with RA today will not need to fear that outcome because advanced treatments, such as biologics, can manage arthritis symptoms and reduce the risk of permanent joint damage and disability, if the disease is caught and treated early. In some instances, remission can be achieved.
Arthritis can strike at any age with no warning, as in my case. Some forms, particularly inflammatory types such as RA, can create long term pain and disability if not caught early. Therefore, learning what signs and symptoms to look out for, can help early diagnosis and ensure the best possible future for those of a younger age. If you or your child experience some or all of these symptoms, it’s a good idea to see your doctor for advice:
- Joint stiffness (particularly in the morning)
- Joint inflammation (visible swelling and possibly redness)
- Tender and sore joints
- Noticeable ongoing fatigue (not just general tiredness)
- Loss of physical function (losing strength and the ability to move your body the way it normally should)
My 5 Tips For Living Well With Arthritis
One of the things I didn’t do enough of in the early days of living with arthritis was keep active. I am now learning, after all these years, that doing regular exercise to strengthen muscles and retain flexible joints is vital. I took up yoga a couple of years ago and it has been the best thing for me as it’s gentle enough, yet builds enormous stability and strength in all parts of the body (including my mind). It’s important to find a type of exercise you enjoy and is safe for your particular needs. Setting some goals within your exercise regime can also help inspire you to keep going. For me, trying to get out of the house each day, even if it’s just for a short walk or some shopping, keeps the body moving and motivated.
It sounds so common and “I’ve heard it all before” but eating healthy, wholesome food, is so important to be able to live with vitality. There is ample research to show that refined sugars create inflammation in the body and too much fat and junk food are not good for us. I for one know how awful I feel in my joints and pain levels if I steer off my healthy eating path. I became a vegetarian at the start of the year and this, in addition to already eating a nutrient rich diet, made an enormous difference to my inflammation levels. Another interesting thing I found was that after I started yoga and started noticing the benefits, I wanted to eat healthier. I was actually put off eating junk food.
BE YOUR OWN ADVOCATE
Ultimately, we are in charge of our own health, not our doctor, friends or family. They are there to support us but we are the ones who get to choose. Be open and honest with your healthcare team. There’s no point sugar coating anything with them – they are there to help you, so ask questions and speak up about your concerns and what else can be done if things aren’t going in the right direction. Also, I think for far too long I pinned all my hopes on what my doctor was prescribing me and didn’t really take charge of the other aspects of my life, such as what I ate and how I tried to keep active. I realised that for me to live in the best possible way, it was going to take more than the pills I was prescribed. Being well is a multi-disciplinary act.
Stress is a known factor for exacerbating arthritis symptoms. It activates our body’s inflammatory response system and for someone living with inflammatory arthritis, this is not a good idea. So be mindful of what triggers you have in your life – working long hours and not getting enough sleep will inevitably cause the body stress and a flow-on effect into other aspects of your life. Spending time in nature and doing fun things with others always helps to reset our body and mind for another day.
Living with a chronic condition like arthritis can affect us emotionally and sometimes cause self-esteem issues, making us retreat and become less engaged in the world. We can lose sight of who we are because pain and disease overtake the person we thought we once were. Some of the things I like to do to feel good about myself are: I try to look my best each day, even if I’m not going out; I keep well-groomed and put make up on; I make plans with friends and set goals to ensure I have some enjoyable things to look forward to; I use positive techniques such as mindfulness and meditation to remind myself that I am capable and strong; I volunteer with community groups and help others living with arthritis.
Giving your time and loving others selflessly reminds us that we are important and can make a difference – and that feels good.
Having lived with rheumatoid arthritis most of her life, Naomi Creek is the national coordinator for CreakyJoints Australia. A long-time advocate for the arthritis community, Naomi also co-leads the Young Women’s Arthritis Support Group (in Victoria) and previously was a community guest speaker, telephone helpline operator, and board member of Arthritis Victoria. Naomi lives in Victoria, Australia and is a graphic designer, artist and self-confessed volunteer junkie.