What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their stories and tips.
Victoria Wilson is a thirty-something mum and wife who suffers from a neurological condition called Charcot Marie Tooth Disease. Through her blog Happy Tired Mummy, she wishes to inspire everyone to make at least one healthy choice everyday to work towards becoming healthy and happy.
Tell us a little about yourself.
My name is Victoria and I’m a Mum to two little girls and wife to the most supportive guy. We live 2 hours south of Sydney, Australia with our two cats. I am a beginner yogi and I enjoy Pilates, eating well and spending time with my family.
I have a disease called Charcot Marie Tooth Disease (CMT). It is an inherited neurological disease that causes slow degeneration of the peripheral nerves including feet, legs, arms and hands. Muscles are weakened due to the loss of stimulation by affected nerves. The severity of the disease can vary from person to person even within the same family. The symptoms are also varied. The type of CMT I have means my children had a 50% chance of having too. My oldest has CMT and my younger daughter isn’t showing any signs of the disease.
When did you first get sick?
I was born with CMT but didn’t show obvious symptoms until my mid-twenties. I first started noticing symptoms after my first baby was born in 2010. I was experiencing numbness in one of my feet when walking around the shopping centre. I couldn’t lift my big toes either and my hands were also changing. I was having trouble with fiddly tasks like buttoning up clothes. I was diagnosed with CMT in early 2015 after seeing a neurologist, and my oldest daughter was diagnosed later that year.
In what ways does having Charcot Marie Tooth Disease affect your daily life?
CMT affects my life every day in everything I do. I have trouble walking as I have footdrop. I walk quite slow and can easily trip over my big toe if I’m not concentrating which can be very painful. I have trouble cutting up food when doing the cooking, and pegging out clothes is very tiring. Scrubbing showers is now virtually impossible as I don’t have a lot of strength in my hands. CMT can also be very fatiguing as my muscles are working harder to compensate for the ones that no longer work.
How do you handle everyday practical problems?
I wear ankle foot orthotics when I’m out and about which allows me to walk safely and comfortably. I use jar openers of various sizes and I generally use frozen vegetables rather than fresh so I don’t have to do any chopping up. It saves me time and energy in the kitchen.
I used to be able to do all of my housework in one morning, but over the last couple of years I have had to break it up and clean just the bathrooms and hard floors or just do the vacuuming. I often buy my groceries online and have them delivered. I love this as it saves me so much time and energy allowing me to put that energy into preparing my family’s meals. I can’t wash my children’s hair (I either poke them in the face or get shampoo in their eyes) so my Mum does that job for me.
Do you have any tips on coping with symptoms? Is there anything you can do to prevent relapses?
CMT causes me to have very tight heel chords and hamstrings. I also get a stiff back (probably caused from the way I walk). I find yoga and stretching on a daily basis helps keep away aches and pains. I also like to try and massage my hands and feet as they get extremely tight. If I don’t stretch regularly I become very uncomfortable all over and much more tired (and cranky).
Lately I’ve been working on strengthening my body through Pilates, yoga and light hand weights. I am hoping the stronger I get the less fatigued my body will feel.
Being a chronically ill parent presents special challenges, from lacking the energy to run after your kids to experiencing guilt towards your family or anxiety about the future. How do you deal with these emotions and obstacles?
I would love to have the energy to do more things with my girls and my husband, but I do the best I can with the energy I have. I spend all of my time with my kids and I cuddle them to sleep every night. We have our favourite shows to watch and just “hang out”. I am at a point where I don’t let myself feel guilty. I know I’m doing my best (and my children seem to love me), and that’s all I can ask of myself. I’m more likely to have Mum guilt when I have to clean the house and they have to amuse themselves.
I do sometimes feel anxious about the future (both mine and my oldest daughter’s future), but it doesn’t do me any good to feel that way. I try to focus on short term goals and just getting on with what we need to in terms of school commitments and everyday life.
I try to live as healthy and happy as I can as it is all these small moments that add up to make my life.
How do you keep joy in your life on a day-to-day basis?
I find joy in a lot of simple things. I love cuddles with my family, even just watching them play and chat to each other makes me so happy. I love a good book, meditating, watching my children’s favourite shows with them, finding a good documentary to watch, learning, green smoothies, being silly with my husband, and even just resting. I suppose it’s just feeling grateful for the people around me and being in the moment.
What would you like to tell others who are diagnosed with chronic illness?
Focus on what you can do and not on what you can’t do, and don’t compare yourself to other people (or even yourself in terms of what you used to be able to do).
I could focus on the fact I can’t walk far even with ankle foot orthotics (afo’s) on when I used to be able to wear regular shoes and do errands for work. I could think about how other people can wear flip flops, or run when I can’t. I’d feel miserable if I focused on that.
Instead I focus on what I can do. I have access to afo’s which have improved my life, and I can get out and about safely. I also have the ability and opportunity to strengthen my body and improve the muscles that aren’t affected by CMT. I have just learned to do static lunges and I balanced on one leg barefoot for 20 seconds the other day. It was my own personal “win” and it’s little improvements like that make me feel strong, capable and determined. It doesn’t matter what other people can do! It doesn’t even matter if I used to be able to do more than this.
The other thing I would suggest is try to incorporate some stretching into your day to alleviate aches and stiffness, and to get your circulation going. I’m often happier when I’ve stretched.
I could go on (but I will refrain). Over on my blog Happy Tired Mummy, I aim to share stories and helpful tips that have worked for me in terms of feeling happy and healthy despite chronic illness or disability.
How do you deal with chronic illness on a daily basis?