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”
Tag Archives: FHL1
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 personal Independence payment and decision
Back in August the brown envelope of doom came throw my letter box (thanks Mr Postie!), I wasn’t expecting it so at first my anxiety was fine then I opened it read the first few lines and boom the panic set in. Not going to lie how much fear the thought of the assessment processContinue reading “My personal Independence payment and decision”
Changing places and why I started campaigning!
In aid of Changing Places Awareness Day 19th July 2019 This will be my 3rd year celebrating the world of changing places, it’s definitely been named by my husband, family and friends as my favourite subject to talk about! I kinda fell into Campaigning about changing Places toilets by mistake after reading an amazing blogContinue reading “Changing places and why I started campaigning!”
HDU Ward 6 – Milton Keynes university hospital
I’ve had many trips and sleep overs (hubby likes to say I abandon him) at Milton Keynes university hospital in many different wards but it was my first experience staying on the high dependency unit. Due to an operation i underwent in April of this year I call it my fanny MOT. After my fannyContinue reading “HDU Ward 6 – Milton Keynes university hospital”
My Cough Assist machine
I like my Life to be full of smiles and laughter… But I want to share apart of my life I don’t normally show everyone, not because I’m ashamed or scared of what others may say, And I’m definitely not looking for any sympathy as this is my life and I’m ok with that it’sContinue reading “My Cough Assist machine”
My secret toilet campaign with Tesco supermarket!!
The day has finally arrived where I can share with the world, shout it from the roof tops… YES it’s true I’ve been keeping a big secret since June 2018, As much as it was going to kill me to keep this secret I knew I had to, it was far to important to riskContinue reading “My secret toilet campaign with Tesco supermarket!!”
Reflection on 2018
Well can you believe we are just about to wave goodbye to 2018 going into 2019 or maybe some people are sticking their fingers up to it!. it doesn’t feel real anyone else feel that way? where did this year go!? My 2018 break down 2018 started with a beautiful family wedding, but unfortunately itContinue reading “Reflection on 2018”