My virtual marathon 🏃

Hello, my name is Georgia, I am 21 years old. I love swimming, horse riding, baking, crochet and being involved in Girlguiding. I am just about to go into my final year at university. I have Ehlers-Danlos Syndrome, POTS and multiple other health conditions. I have also recently been diagnosed with FND/NEAD. So, what is FND/NEAD? FND stands for functional neurological disorder and NEAD stands for non-epileptic attack disorder. NEAD is part of FND. Functional neurological disorder itself is an umbrella term for a wide range of symptoms including movement disorders, non-epileptic seizures (which can resemble epileptic seizures), dizziness, nausea, difficulty walking etc. It can also affect cognitive functions during attacks. However, like all medical conditions the symptoms can vary hugely between individuals. The doctors are not entirely sure what causes it, although there are many different theories. The way I like to think of it is that it is a miscommunication between the body and the brain. How does it affect me? As mentioned previously there is a lot of variation in symptoms and even individuals can experience different symptoms at different times. For me personally, my left side is more severely affected than my right. My right arm can sometimes remain unaffected even during seizures. There are some days when I can seem to be completely fine and can do everything that most people my age can do. I can go on days out, swim, help run the local Brownie unit, all with no symptoms. There are other day’s when I can barely sit up or walk, have very limited control over my limbs and cannot eat due to extreme nausea. There are also in-between days. This is also partly where the randomness of FND/NEAD comes into play. During some of these in-between days I can follow complex crochet patterns but be unable to navigate around our local supermarket or find things that we buy nearly every day. I can have trouble walking (it often looks a little bit like you might imagine a drunk person or someone with cerebral palsy) but can swim with no problem. However, I try and not let any of this get in way and try and lead as normal a life as possible. This is partly why I am completing a virtual marathon to raise awareness and funds for FND Action (a charity which helps support patients and works towards research). What is a virtual marathon? A virtual marathon is where you cover the distance of a marathon over a specific time period. I am doing it between 1st and 31st August this year. One of the reasons I am choosing to do the virtual marathon specifically is because of the effects of FND on my (and many other patients) ability to walk. Also, because it can be done at my own pace (mostly) it allows for the days when I struggle to even sit because I can catch up on the good days. How you can help? There are a couple of ways you can help support me with my virtual marathon. One is to donate to the GoFundMe page. Another way is to share this blog post, and help spread awareness of FND.

Thank you very much for taking the time to read this post.

Georgia x