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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
Dear Teacher… Supporting children at school with invisible illness (Part 2)
An open letter to teachers of children with invisible illness I know that teachers want to do the best for my children with invisible illness, I can see it in their face. I’m not blaming them or shaming them, the opposite in fact, I want to help them. I wonder if they...
Dear Teacher… Helping Children at School with Invisible Illness (Part 1)
An Open Letter To Teachers of Children With Invisible Illness This open letter to teachers first appeared on my original blog My Stripy Life back in 2015 and writing it was an emotional and cathartic experience. It was based on supporting my three children through...
Managing Chronic Pain – 4 Things To Stop Today
Pain has been a part of my life for as long as I can remember, sprains and strains as a kid, always falling, unable to weight bare on and off throughout all my childhood which I now know was due to a Labral hip tear and impingement, as well as dislocations,...
How To Cope When You Are Overwhelmed By Your Chronic Illness Diagnosis
Why do you feel overwhelmed when you have a chronic health condition Dealing with a chronic illness diagnosis can be overwhelming, leaving you feeling lost, frustrated, and even powerless. Chronic illnesses can cause physical and emotional challenges, which may lead...
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...
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