Living With Undiagnosed Illness – A Day In The Life Of Jodie
In this interview series we highlight various chronic illnesses and the amazing warriors who deal with them daily. My aim is to raise awareness as well as celebrate the many ways in which our fellow warriors overcome the limits illness and disability has placed on them.
Today I have the privilege of sharing Jodie's "A Day In My Life" interview here on Chronically Hopeful. Jodie has fought hard for years to get a diagnosis - a battle that many chronic illness warriors know all too well. She has a lovely blog where she writes about her health, her goals and victories on her road to recovery.
What is your diagnosis?
Technically I have no official diagnosis - only a lack of diagnosis and a long list of symptoms which exactly match those of M.E/CFS.
Briefly explain the process you went through to get your diagnosis.
It was a tremor so bad that I dropped a food tray in my hostel dining hall one night that finally drove me to seek help. I went through almost every doctor the University could offer and was told it was everything from high cholesterol to depression and even that I was making it up.
A Neurologist at the local hospital suggested, with a shrug of her shoulders, that I should spend a year in bed and then I'd be fine! It took many months to find a doctor not only willing to accept that she didn't know what it was but also that she would do everything in her power to find out what it could be. Even then it was a long time before she discovered the possibility of M.E/CFS.
What did a typical day look like before you fell ill?
I was pretty active - running or going to the gym three times a week as well as dance practice daily. I attended school full time and was hugely involved with extra curricular activities there. I was actually a bit of a nerd academically and was very dedicated to study and a high achiever when it came to grades.
What does a typical day look like now?
When I got ill I struggled to motivate myself to leave bed, let alone study! I was forced to drop out of a lot of my papers and my degree took my an additional year to complete. Dance was out of the question and a short walk to uni was enough to leave me exhausted, struggling for breath and with legs that felt like they were made of concrete.
I'm no-where near this ill now and live an 'almost normal' life - I work full time and am back to dancing for 1 hour a week!
Which activities or hobbies do you enjoy doing?
I'm a dancer so I spend a lot of my time when I have energy doing that or yoga. I've also recently re-taken up flute lessons, so fingers crossed this doesn't completely wear me out!
I have a motorbike so I enjoy taking that out on a sunny day and I absolutely love spending time with my friends and family. I feel hugely blessed that I am once again able to do all of these things, although not as intensely as I would have before I fell ill.
What are some of the helpful adjustments you have made at home or at work?
Learning to manage stress. Dealing with stress management has been a HUGE help for me as I find stress to be a major driver in causing flares. Resting often is also something that I never would have thought of previously but is now a part of my usual routine.
I often find myself just sitting in bed and being - not necessarily doing anything at all. It's a good way to recharge. I've also had to learn to let my partner do a lot more around the house than me, the guilt around letting him care for me is still something I struggle with daily but without him taking the lead I'd never be able to live the life I currently am.
Share your favourite survival kit items.
Ibuprofen - I never go anywhere without this...
Walking stick - my walking stick folds down and fits in my bag! So so so so useful. You never know when you might run out of energy and need something to lean on.
Phone - not only for emergency contact and peace of mind but also because it holds music, games, books, my to-do list and calendar so I've always got something to do if I need a distraction and reminders if I'm having a brain fog kinda day.
Where can people go to find out more about your condition?
Would you like to be featured in this series?
If you would like to share your story to help raise awareness of your conditions and show others they're not alone, please visit this page. I look forward to hearing how you are rocking this chronic illness thing! - Char
Char's note: I have a folding walking cane too - they are great, quite sturdy!
I bought a cheap metallic purple one with flowers on from Amazon - pretty and so helpful!