Welcome to the chaotic life of Mhairi.
This page shares the ongoing story of my chronic conditions and how it all began. It's a journey that was entirely preventable, and I'm here to shed light on it.
This will be a blog with personal updates and FVSD updates.
This week has been hectic and a bit more dramatic than expected. We started off in London at the INFACTUK meet up which I think would have been a better idea to attend on my own but it was really helpful and also quite weird because of how I'm there representing myself and my family and then there are others fighting for support and grieving for lost children.
Well, what a week it's been in my house. My Oldest son lost his first tooth. It's half term so absolute chaos with four kids. We had a few updates on the medical front. First of all We were told that we could be referred to genetics for my older son to see if we could find a cause for his unexplained hypoglycaemia which is being treated as ketotic hypoglycaemia And according to the Nhs guidelines, he should have grown out of more than a year ago. He's had a metabolic disease panel done before but I think it's possibly something hormonal or something either so rare or so simple that's been missed. I dunno that's why they're the doctors. We have got good support in place. So we shall see.
In a slightly unexpected way I got into trouble with TikTok this week for spreading misinformation. I created a pair of videos discussing the situation of the FVSD families and how the government has responded. The second video was posted no issues however the first video which was posted they took issue with claiming disinformation and political posturing which honestly it was neither. It threw up warnings and was taken down by TikTok. I appealed and it was rejected and then when I tried to complain there was no response. It's a common issue with the platform that creators don't have the ability to discuss complaints or issues with a human. I'll post the videos and let you decide if it was inappropriate. Please email me with your feedback. Jockamum@gmail.com
I honestly cannot thank Emma and Janet enough for setting up this community meet-up in Manchester. It helped me in ways I didn’t even fully understand at the time. Speaking to other families and sharing stories felt like something I really needed to do.
If anyone ever asks me in the future why I decided to start doing this, there would be a lot of reasons. But sometimes it’s simply a case of: I just felt like doing it.
Jockamum
