Sometimes there is absolutely no rhyme or reason for why the symptoms are worse & that can be the hardest part of this journey; accepting what simply cannot be explained or understood. The poison-in-my-veins feeling is the one that floors me more than the fatigue or the dizziness or the nausea or the sensory overload … Continue reading 7 years

I have lost the ability to make decisions. I find them quite distressing. Simple choices have come to feel as if they are the most important decisions in the world. I don't know why. Perhaps it is a lack of confidence; that I have lost confidence in my physical and cognitive abilities, so how can … Continue reading Decisions, decisions

Every now and then I have a complete crisis of confidence. Not regularly, and not for very long, but every now and then.  I question why on earth someone like him would choose someone like me. I wonder if my friends have only stuck around through pity. I struggle to see myself as more than … Continue reading Self worth 

It can be hard not to feel pathetic sometimes. If I have big plans in the evening, and by big plans I mean leaving the house, I tend to spend all day just sitting and waiting.  It would be lovely to be able to potter around beforehand, but my energy is so precious that I … Continue reading Pathetic 

Thank you for all of the well wishes ahead of tomorrow ☺️ I'm feeling very organised and grateful to my little team of helpers. It'll be a BIG day for me and I will struggle for a while afterwards but it is always worth it and I feel very strongly about raising awareness of this … Continue reading The Final Countdown