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.
Tell us a little about yourself.
My name is Rhiann and I am nearly 30 from a small town called Pontypridd in South Wales. I was diagnosed with a neurological condition, known as a long-standing brain stem lesion which causes dizziness, vertigo and a symptom known as spastic paraparesis which causes severe stiffness and weakness in the legs. I have a 2:1 degree in Psychology and currently live with my parents and dog called Honey. I write on my personal blog called ‘My Brain Lesion and Me’.
When did you first get sick?
This is a really interesting question and one which we cannot answer! Funnily enough, when I was first born the doctors thought that there was something wrong with me, and I had a brain scan at 2 days old. Looking back there were little signs throughout my childhood that there wasn’t something quite right, but they were easy to brush off as part of growing up. Throughout my late childhood and teenage years, the dizziness was a big part of my life, which only deteriorated as I became older, along with all my other symptoms and especially the problems with my mobility.
In what ways does having a neurological disease affect your daily life?
I am sure like with any other person living with a chronic illness; living with a neurological condition affects every facet of my life. With my symptoms – including the dizziness as well as legs that can give way with no warning – I am unable to go out on my own which has significantly affected my independence, my social life (now non-existent) and relationships with friends. I have a carer that takes me out about twice a week to go to appointments or do errands but much of my time is spent at home. When I do go out for long periods I need a wheelchair due to the weakness in my legs. I also need a lot of help with a lot of daily chores, for example due to the fatigue and other debilitating symptoms I am unable to do things such as the main food shop, cook by myself or do much chores around the house.
How do you handle everyday practical problems?
I take a lot of breaks! The trembling and weakness in the legs is obviously very debilitating and means that I am unable to walk or stand for very long so everything has to be done in little chunks and a rest is then needed before I’m able to anything else. Pacing is an important tool when learning how to self-care whilst dealing with chronic illness.
Do you have any tips to cope with trembling legs, severe dizziness and other symptoms? Is there anything you can do to prevent relapses?
The thing with those living with neurological conditions, is that no patient is the same – no two will experience the same symptoms and as such no one coping technique will work for every person. So, my top tip would be to learn about your condition, listen to your body and determine anything that triggers your symptoms or make them worse. Keeping a journal or notebook, I have found is the easiest way to keep track of this.
In my experience, a person living with a neurological condition needs plenty of rest and breaks in between activities, especially when living with trembling legs as it can so easily lead to falls. As my symptoms are constant, apart from resting and taking breaks, there is little I can do in terms of coping. I have found that massage really helps with the excruciating pain but unfortunately this is a very rare occurrence due to the high cost.
Distraction often works to some extent, so take time to do the things you love whether it be reading, binging on your favourite TV show or even doing some arts and crafts!
How do you keep joy in your life on a day-to-day basis?
One way that helps me to remain positive even in the darkest days living with a long-term health condition is my positivity board and scrapbook that is filled with positive and inspirational quotes, photographs of great memories and cards from great friends. Just a small collection of things that make me happy and reminds me that there are still good times despite living with debilitating symptoms everyday.
Practicing gratitude is also important in still keeping joy in your day-to-day life with illness. Reminding yourself of everything that you are appreciative of in life and taking time to appreciate the small, everyday moments really does help to keep joy even on bad days.
What would you like to tell others who are diagnosed with a neurological illness?
Never give up on hope or your dreams. Don’t jump to the belief that you are no longer able to do things that you did before. You may not be able to do them in the same way as before, but with a little thought and creativity you may find new ways of achieving your dreams. I thought I would never be able to travel again, when the symptoms became so debilitating; spending a lengthy wait at an airport and then flying just felt like too much for the dizziness and vertigo to handle. But then my parents and I considered a cruise and this year I’ll be going on my third cruise visiting Norway, a country I have always wanted to visit!
For more personal accounts and tips on living with a neurological disease, check out Rhiann’s blog My Brain Lesion and Me.
Do you also suffer from an invisible illness? What helps you deal with the debilitating symptoms and to stay positive? I’d love to hear your best tips and tricks in the comments.
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