Category Archives: Uncategorized

Anticipatory grief is a feeling of loss or grief that occurs before a death or loss happens. It can be experienced by the person who is dying, their loved ones and their family. Living with MND is continuous cycle of loss, grief and adapting to change. The body is in a permanent state of decline.Continue reading “Day 1882 – Anticipatory grief & What could have been”

Another year has passed and I’m still here. It’s not incurable it’s just underfunded. It could affect you or someone you love at any time. 💙 Thank you so much to everyone who liked, commented and/or shared the video of my 5 year diagnosis anniversary. I’m blown away by the response & in 24hours it’sContinue reading “Day 1828 – FIVE YEAR DIAGNOSIS ANNIVERSARY”

Disclaimer:- This post contains an image of an open wound. Also my memory of recent events is a little hazy due to the strong medication I was given but I have tried to document everything as best I can. It’s a New Year! Many of you will have set yourself goals for 2024. To be moreContinue reading “Day 1686 – Don’t write me off”

“A new documentary has been released which follows a key discovery made by researchers at University College London that suggests a promising target for new treatments to tackle motor neuron disease (MND), a terminal condition. Backed by LifeArc and other MND charities and the MND scientific community, the short-documentary ‘Turning the Tide’ details the scientificContinue reading “Day 1600 – Turning the Tide”

When I started this blog, I set out to share my journey ‘warts and all’. I had hoped to share positive experiences too but they are far more rare than I would like. Previously when I have shared some negative experiences I have received a backlash from those involved. They haven’t taken kindly to havingContinue reading “Day 1532 – My First Hospice Experience”

I’m not very good at talking to the camera but I thought I would do something different while my voice is still strong. Getting through each day robbed of your independence & future, trapped inside your own body requires a lot of mental strength. I wouldn’t wish this on anyone. Please consider an MND charityContinue reading “Day 1462 – Four Year Diagnosis Anniversary”

Apologies for the late post. There’s been a lot going on. Mainly issues with my care provider which has taken up a lot of my time and head space. Whatever time I have left I feel should be stress and drama free but that seems to be impossible to achieve. I’m very depressed, very withdrawnContinue reading “Day 1402 – Don’t let me die”

I found Christmas really difficult this year. Social media has a lot to answer for. My newsfeeds were flooded with images of everyone’s perfect Christmas. Pregnancy announcements, engagements, a new puppy. People my age making christmas special for their kids. Family photos in matching pyjamas. Friends out drinking ‘merrily’. I’ve been stuck in the sameContinue reading “Day 1268 – Clinical Trials and Test Results”

It’s been a difficult time since my last post. I was disappointed to learn that it was misinterpreted by some and caused a lot of upset. That was never my intention. I naively presumed that all of my readers would be able to see things from my perspective and would be able to put themselvesContinue reading “Day 1222 – Updates & Losing Doddie”

I really didn’t think that we would be here again. I thought I had a better relationship and better communication with my care provider. I thought they had learned and moved on from my experience detailed in my post from “Day 950”, but no. I had a message on Monday to say that the carersContinue reading “Day 1147 – Seen but not heard”