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“You either walk inside your story and own it or
you stand outside your story and hustle for your worthiness”.
Brene Brown
An Open Letter To My Charcot Marie Tooth Disease
Writing can help you to manage stress by understanding what’s going on in your mind + can be a healthy + intimate way to deal with your emotions about your health condition and what that means. I have always found the process extremely cathartic : here is a letter I wrote to my Charcot Marie Tooth disease.
The Top Three Things That Help Me Manage My Chronic Illness
Narrowing this list down to just three things that help me manage my chronic illness has been tough. I've tired not to choose the top three things that help me manage EDS or CMT or even look at it through the eyes of the main symptoms but more through the lens of my...
Emotional Mastery In Chronic Illness… Lessons From Disney’s Frozen
What if the thing you really want is hiding right where you are afraid to look? This week my daughter turns 12. I am not quite ready to accept that she is ALMOST a teenager - my sweet little girl is turning into a bright and sassy young lady. For a birthday...
95 Things NOT To Say To Someone With EDS
I bet if you have a chronic illness, especially one as misunderstood as Ehlers Danlos syndrome (EDS), someone somewhere has given you a piece of well meaning advice that hasn't quite landed. As you will see, even from well trusted medical professionals. Unless you...
Evolution. Life After My Rare Disease Diagnosis.
20 years ago I was diagnosed with my first rare disease, but this story is not just about diagnosis. Looking back on my life I don’t recognise the woman I was before, or who I became in the beginning. It changed me then allowed me to evolve, this story is my evolution.
Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness
It happens to everyone no matter how many hours we have in a week, how supportive our families are or how great we are at delegating. Everyone. No one has there shit together all the time no matter how much they pretend that they do. But when you are living with a...
I’m Fine… What the f**k does that even mean?!
I’m fine. I used to use this reply all the time when people would casually ask me how I was. Short, sweet and to the point, but what does 'I'm fine' even mean? The dictionary would have you believe that I was feeling 'in a satisfactory or pleasing manner or very...
EDS And CMT One In Twelve Million
Does it make me special? One in 12 Million... the odds of having both hypermobile Ehlers-Danlos syndrome (EDS) and Charcot Marie Tooth Disease (CMT), based on current prevalence! Some days it feels pretty special, let me tell you why. I’m not going to dwell on the...
The A-Z of Ehlers Danlos Syndrome (EDS)
The A-Z of Ehlers-Danlos syndrome (EDS). Simple, jargon free and real. From adrenaline highs, mast cells and slipping rib syndrome to the zebra mascot. If you have EDS or know someone that does these thing will sound familiar. But, do you know everything there is to...
The Top 10 Surprising Health Benefits Of A Cup of Tea
The great British cup of tea… I have to admit as I sit here cup in hand, I am slightly addicted. Meeting up with my with my girl friends at the local coffee shop on a Friday morning wouldn’t be right for me without my nice cup of tea. In recent years coffee has made...
Acceptance – Why it is so important when you have a chronic illness?
Acceptance in human psychology is a person's agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it. In simple terms getting your head...
Managing Chronic Pain Without Medication
7 golden steps to manage your chronic pain I have lived with pain for as long as I can remember, it’s now chronic, it’s never going away. I have Charcot Marie Tooth disease, a neuromuscular disease that affects the motor and sensory nerves to my arms and legs, you can...
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