Life isn’t fair, but I can make the best of it

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”

Our accessible home anniversary

Wow I can’t actually believe we are in May where has the time gone!? The first weekend in may ‘bank holiday weekend’ is a special memory for hubby and i, but more for me it was the weekend we finally moved into our accessible home provided by Habinteg – I have spoken a few timesContinue reading “Our accessible home anniversary”

Why I am in the activist

Let’s face it this last year has been a number of emotions for all of us. In the midst of it all, I have been thinking a lot about activism. I’ve been thinking about why and how I became an activist in the first place, plus about how activism is even more essential now thanContinue reading “Why I am in the activist”

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”

Removing barriers of employment for disabled people

If the future me had wheeled into my pub at 24, sat me down and said your life is going to change in more ways than one. It might take you a few years to find your place within society and where you truly belong in this crazy world but you will. When i wasContinue reading “Removing barriers of employment for disabled people”

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”