Jockamum Blog:

What's going on here then?

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. 

August 2026

Summertime Struggles and Raising Awareness for FND

Functional Neurological Disorder is something that can affect many people living in the UK, it estimated by the BMJ to be a least 100,000 people. It's also been reported in people living with FVSD. It's a condition where the brain malfunctions and fails to communicate with the muscles in the body properly. Unlike with Epilepsy there are no abnormal electrical signals that can be detected with the appropriate diagnostic tests. They can have non-epileptic seizures and find themselves incredibly physically disabled by loss of movement in legs, vison loss, incontinence and even the ability to speak. This particular community has experienced the real care of the NHS at it's worst and knows full well the struggles of families coping with difficult and rarer conditions. 

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Not taking I don't know for an answer

For quite a long time I have been fatigued and everything you can think of has been blamed on it as the possible cause. After my 4th baby it was discovered that I had an adrenal problem. I also had a pituitary cyst which somehow disappeared and I'm actually quite prone to cysts. That in itself is uncommon for it to disappear especially if it is causing symptoms. I was getting nowhere with my local endocrine team so have decided to seek some private tests by finding an expert in this and trying to solve the mystery. If I can it may in turn help others with FVSD as I suspect this is a yet undiscovered symptom of the condition. If it is then I will endeavour to help others so we can take this to the research team at Manchester.

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July 2026

Fatigue, pain and struggling on

I had planned to write in the blog either weekly or fortnightly but I just wasn't feeling well enough to multitask and I was trying to concentrate on my TikTok videos but I just dont know if it's going anywhere. I'm planning on doing a bit more updates on here over the next few weeks anyway. This blog will hopefully become a resource for families affected with FVSD and go on as an account of what happened. so good news first BOTH my sons have been accepted to be seen by the genomics team at Sheffield and I'm not leaving that appointment without an agreement that I'm happy with. 

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Heatwave

Summer is the worst time of year and best time of year. All the pleasures of summer with the worst parts of having adrenal insufficiency. I am reasonably confident that I have secondary adrenal insufficiency due to a pituitary cyst that has magically disappeared according to my doctor. I don't think that is the case at all and have been struggling immensely with dehydration, migraines and fatigue for the last few weeks. Spinal problems are causing flares of low cortisol and fatigue which makes normal life just that bit harder. Despite my husband reminding me to drink I feel no thirst and feel sick when I try to drink anyway. It's thoroughly unpleasant. I think Starmer leaving is a good thing because he never struck me as a confident man who had the ability to appear calm on the surface. Will it help the FVSD community? Unlikely.

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June 2026

Westminster and Migraines

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.

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May 2026

Progress and Posts

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. 

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"There aren't many people with FVSD who have been able to lead a "normal-ish" independent life, and that's what makes my perspective unique."

Jockamum