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!”

What having Muscular Dystrophy feels like

Muscular Dystrophy still a very misunderstood condition, if you are familiar with the muscular dystrophy then it’s probably easy to tell if someone has it. But unfamiliar you could easily mistake it for something else like MS say. I can’t tell you the amount of times this has happened to me! However, muscular dystrophy affectsContinue reading “What having Muscular Dystrophy feels like”

As an adult with Muscular dystrophy, i have a responsibility.

I have always said our superpower is having the ability to share our experiences. The older i get i feel a sense of responsibility to the next generation growing up. Or not yet living with Muscular dystrophy. As an adults with myofibrillar myopathy a rare form of muscular dystrophy I do believe we should helpContinue reading “As an adult with Muscular dystrophy, i have a responsibility.”

What my wheelchair has taught me about life.

Everyday is a life lesson some way or another. I have a rare form of Muscular Dystrophy a progressive muscle wasting condition I use a wheelchair 24/7, 365 days of the year unless we have a leap year of course. That has been my reality of more than two and a bit decades. But myContinue reading “What my wheelchair has taught me about life.”