Category Archives: Uncategorized

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”

August seems to be the month for visiting the hospital. I was diagnosed August 2019. I got my feeding tube plumbed in August 2021. Recently I visited the hospital for my first serious choking incident, August 2022. I accidentally inhaled chicken instead of swallowing it, which they say anyone can do, MND or not. ButContinue reading “Day 1101 – Near Death By Chicken”

Some of the feedback from my previous post showed that many of you found it upsetting or that it made people angry.  I think it’s really important to share my journey, warts and all. I don’t want to sugar coat anything. It’s also therapeutic for me to write down how I’m feeling. So I hopeContinue reading “Day 1020 – Birthday’s, Blood clots & Tears”