The beginning of 2018 marked 13 years since I first fell ill with M.E (I will share my story properly soon). At 28 years old to have spent nearly half my life living with this illness and striving for health has not been easy, but there’s been beauty in the battle and I’m grateful for all that I’ve been through.
I’m often reluctant to share how long I’ve been ill for, for fear of it worrying those who are recently diagnosed, however I think it’s important to be honest and to acknowledge that everyone’s experience with this illness is completely unique.
I also want to make it very clear that 13 years is not a signifier of my time spent bed ridden or housebound. I’m so excited and endlessly hopeful that full recovery is possible and one day I’ll achieve life beyond this illness, and I’m forever mindful that there’s so much life to lived during it.
I’m truly grateful that at 15 years old I learned lessons that many will live an entire lifetime without ever truly grasping. It gave me a powerful perspective on what really matters in life and I’ve carried that with me in all that I’ve been able to achieve.
Here’s a wee snap shot of some of the lessons I’ve learned:
No ones position if privileged in life is concrete. Things can rapidly change in any givien moment, that works in both positive and negative ways.
Laughter is as necessary as breath.
Do something creative, not because you’re good at it, but because you genuinely enjoy it.
Symptoms speak in a language we’ve never been taught to understand. They are the bodies way of communicating its needs. Listen and take appropriate action.
Suppressing negative emotions heightens symptoms. It’s not your duty in life to people please. You thoughts and feeling matter.
Your gut is right 99.9% of the time. Listen to it. Trust it. Act on it.
Boundaries are vital - set them clearly and consistently.
Having honest communication of your emotions, firstly with yourself, then with others, is paramount. Bottling everything up will not help.
Avoidance is the maintenance of every problem.
There is something to be grateful for every single day.
Loneliness is hellish. Reach out to those who are alone. Especially the elderly, housebound, disabled, new mums. Anyone experiencing a change in circumstance, let them know you’re here.
There is phenomenal power within your breath.
Music is soul fuel. Create a happy playlist and on your toughest days feel the energetic shift with each joyful song.
Say ‘no’ without guilt laden explanation.
There’s always something you CAN do. Acknowledge what you can’t and what you don’t want to do, but focus your energy on what you can.
Grief gets easier with time. Missing someone doesn’t but that’s an indication of how loved they were and memories will forever be cherished.
‘Friend’ is more than a noun.
Don’t waste energy trying to appease fairweather friendships.
Acupuncture is brilliant.
The companionship of a dog is heaven sent.
Podcasts are the short term antidote to boredom in isolation. And a long term source of hilarity.
Stop explaining yourself to idiots.
Stop worrying about being judged. If someone judges you for being ill they are displacing some self loathing on to you. Offer them kindness, or at least indifference, and move along.
Being able to walk out of your front door, alone and with ease, is a true luxury.
Do not drive when you’re dizzy. It’s illegal and genuinely terrifying.
Don’t be like the rest of them.
Lack of empathy is a worldwide epidemic. Don’t let that deter you from heading through life as you are. Your sensitivity is a superpower.
Everyone’s a little bit mental.
Living with friends is so good for your health. Living with your parents...is a means to an end. And temporary.
Move with flow not force - always.
Speaking about what you’re going through is not an act of attention seeking, compliment fishing, uokhun enabling, spreading negativity or being a moaning Minnie. It is finding strength in vulnerability, providing a safe space for others, a means to connect with likeminded souls, it’s brave, beautiful and incredibly freeing.
Sharing what has helped you may help others to not go through what you’ve been through, for as long as you have. Parting nuggets of wisdom, tips and tricks that to you may be fairly common sense, could be life changing to someone who’s trapped in the thick of it and can’t see the wood for the trees.
You have an illness. You are not your illness. You are brilliant and worthy of a rich and fulfilling life.
The face of adversity will always be freckled with light.
13 may be unlucky for some, here’s hoping it’s about to get unlucky for M.E and luckier for me.