If we lived in a fair world, Muscular Dystrophy would not exist. But that also goes for all diseases, yes? Unfortunately, life isn’t fair. Life has a way of dealing you cards you wouldn’t of picked for yourself, I was diagnosed with the muscle-wasting disease 18 years ago. Even with an uncertain future, there’s noContinue reading “Life isn’t fair, but I can make the best of it”
Category Archives: Muscular dystrophy
I am ready to move forward after my second jab
I am officially vaccinated up! Twelve weeks ago i had my first dose, i can finally say that on April 21st, I received my second dose of the AstraZeneca COVID-19 vaccine. According to AstraZeneca who confirms 100% protection against severe disease, hospitalisation and death in the primary analysis of phase III trials. Like most vaccinationsContinue reading “I am ready to move forward after my second jab”
An open letter to muscular dystrophy parents
It’s easy for me to sit here writing about my experiences when it comes to living with muscular dystrophy but what about the parents that live though every fall, slip, hospital appointment. Muscular dystrophy can affect all ages at any point in life. Whether your child has been living with muscular dystrophy for years orContinue reading “An open letter to muscular dystrophy parents”
Overcoming being self- conscious about using a power chair
If you already follow my journey though this crazy imperfect life, you will already know the exciting new i announced a week ago about receiving my new wheels, and if your new to my page welcome it nice to have you here. I think it’s easier for society to automatically think that if you’re aContinue reading “Overcoming being self- conscious about using a power chair”
Our Powers of Observation
Muscular dystrophy takes my physical abilities, but not my powers of observation if anything it just heightens my ability to observe more than others! I may joke about calling me a superhero because of the name of my muscular dystrophy ‘FHL1 Gene mutation’. – my physical limitations just heighten other abilities like my observational skills,Continue reading “Our Powers of Observation”
Redefining the word ‘independence‘
I have written about the importance of Independence in the past and you will hear me in almost all of my interviews talking about it as well. But I read something the other day that made me think, so let me talk about independence in a different way! As children we all strived to becomeContinue reading “Redefining the word ‘independence‘”
Muscular Dystrophy and fatigue
Fatigue is the bane of my life! Having a rare form of muscular dystrophy that’s a progressive muscle wasting condition fatigue can be a huge part of my life but what is fatigue and how does it affect people with Muscular Dystrophy. It’s a feeling of extreme tiredness, exhaustion and a lack of energy. ButContinue reading “Muscular Dystrophy and fatigue”
My body is ready for better weather!
Clocks have changed, nights are getting long does this hopefully mean better weather is on it’s way too. My wheels are crossed and my body is ready! Don’t get to excited i’m about to pull out my bikini and flash flesh, have you tried wearing a bikini in a wheelchair i have definitely not masteredContinue reading “My body is ready for better weather!”