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.
Sophia Galpin is a food, health and lifestyle blogger battling with chronic Lyme disease and Postural Orthostatic Tachycardia Syndrome (POTS). On her blog Spoonie Sophia, she shares her thoughts on coping with chronic illness as well as her passion for creating delicious healthy recipes.
Tell us a little about yourself.
I’m Sophia, I am 26 and suffer from chronic Lyme disease and Postural Orthostatic Tachycardia Syndrome (POTS). Despite my illness I am a keen baker and a health/food blogger. I live in beautiful Cornwall with my boyfriend and little dachshund pup, Copper. I enjoy nothing more than little trips to the beach; feeling the sea air on my face whilst sipping a hot chocolate!
When did you first get sick?
I have suffered from chronic neuropathic pain from the waist down since 2008 (when I was 18). I January 2013 I started getting new symptoms including migraines, muscle pain, weakness, crippling fatigue, joint pain, insomnia, heart problems (tachycardia), and became very sick.
In what ways does having POTS and chronic Lyme disease affect your daily life?
To be honest, it affects every aspect of my life; my social life, home life, relationships, my independence, ability to work and more. I gave up my job as a speech and language therapist when I became ill just under two years ago now. I spend most of my time housebound either in bed or on a mattress in our living room. When I do go out, I use a wheelchair. I need help with daily living tasks – I cannot go food shopping or do much housework, and I need help with cooking etc. This is because I suffer a huge array of extremely debilitating symptoms on a daily basis.
Do you have any tips for coping with physical symptoms like dizziness, tachycardia, shortness or breath, pain and fatigue? Is there anything you (can) do to prevent relapses or flare-ups?
My main tip would be to listen to your body. Plan your days according to how you are feeling and take regular breaks between activities such as showering, talking to a friend etc. Never feel guilty for needing lots of rest. Take note of what triggers your flares so you can fine-tune how you do something next time. Sometimes flare-ups are unpredictable and even when you’ve been really sensible they can just appear out of nowhere. As frustrating as it is, try and accept it and believe that it will pass, it always does.
Pain is a difficult one: it’s extremely difficult to cope with and despite rest, it’s often constant. Try and keep yourself as distracted from it as you can be by watching your favourite TV program, reading a good book or even doing some colouring!
Mindfulness and relaxation exercises are good things to do too as they reduce stress and keep you calm. Avoid stress as best as you can as that always makes the pain worse and reduces your ability to cope.
How do you keep joy in your life on a day-to-day basis?
One good thing has come out of me being chronically ill – that I now appreciate the smallest things in life! I couldn’t be more grateful for my friends, family and boyfriend and for the tiny things that bring me joy, like the brightly coloured autumn leaves, being outside, a small phone call with a friend, flowers and a good cup of tea! Being grateful makes me feel happy.
And I cannot forget to mention my dog who brings me an enormous amount of joy – he’s always making me smile and laugh, even on the particularly bad days!
What would you tell others who are diagnosed with POTS and/or chronic Lyme disease?
I’d say try not to panic about what your future holds, instead focus on the here and now and getting through each day – you don’t know what will happen and dwelling on it brings a lot of negativity and sadness. Hold on to hope as best as you can as that will keep you going no matter how dark some days are. It’s not going to be easy, and recovery will be a slow balancing act, but you have to believe you will get there!
Do you suffer from chronic Lyme disease, POTS and/or dysautonomia? What helps you deal with the debilitating symptoms and keep your spirits up on bad days?