Update with photos!

Hello everyone,
Long time, no talk. I'm really sorry I haven't posted in ages,  I've been really tired and busy! Anyway, today I thought I'd update you on what is generally going on in my life at the moment. This topic was suggested by Beth, thank you for the suggestion and for getting involved! Remember, if you have any queries, ideas or post suggestions please don't hestitate to contact me either via the contact form to your right or check out the 'Contact' page on this blog to find out other ways you can get in touch! I look forward to hearing from a few of you soon.

First of all, I'd like to thank YOU, my readers, for the ongoing support. I am really thankful. Amazingly, I have almost reached 5,000 page views which is absolutely a dream come true and I hope this blog continues to grow and spread awareness of chronic conditions all over the world!

Over the last month or so, my seizures have been continuing to reduce which is really good! In late April, I had an appointment following my 48 hour video telemetry EEG in March and I was given a new diagnosis of Cortical Myoclonus. This causes either one group of muscles or several groups to jerk and therefore causes seizures. Depending on which and how many muscles are involved the severity of these seizures can vary hugely: I may just have a brief jerk of one limb or pretty much all my muscles can be involved leading to a much larger seizure where I cannot move. In many people with Cortical Myoclonus, it is caused by epileptic waves. However, in my case because I have pre-existing brain damage, it is this which causes the wrong signals to be sent out or signals to be disrupted causing a seizure occur. Cortical Myoclonus can mean you have other seizures, for example in my case I have absences, complex partials and occasionally tonic clonic seizures. Luckily, my seizures are not caused by epileptic waves however they are treated the same as if they were epileptic. Therefore, I am just on a load of Anti Epileptic Drugs and thankfully these seem to be keeping the majority of my seizures under control which is a huge step. Cortical Myoclonus is rare and the symptoms vary from person to person.

I am not currently having anymore EEGs but I'm having a brain MRI on 25th May just to rule anything else out and to check my brain damage. I am seeing my paediatrician every 6 months now and if have any worries at all, I can just email her which has been a great help. I have an appointment this coming Monday with a specialist neurologist in Southampton, I'm not sure what will come if this but I will keep you updated.

AFO splints

My life generally has been pretty good to be honest. I am attending school full time and mainly keeping up with the work load although it can be extremely tiring at times! I'm really glad to be back at school though: I'm slowing gaining independence and getting my life back on track! My new AFOs have really helped to improve my walking and are surprisingly comfortable! I now wear them everyday as they also improving my balance so I am more stable. On 30th April my sister Grace turned eighteen making her officially an adult which is crazy. She will be leaving for university in September and it is going to feel so different around here... We may argue all the time but I will really miss her when she leaves!

On a slightly more negative note, I have been struggling with horrendous back and neck pain which has been made worse by a seizure I had on concrete last week. I have been trying the usual pain relieving techniques including applying heat and ice, doing gentle stretches and using a T.E.N.S machine. These have all helped to some degree however I'm still in a lot of pain and needing to take Codeine on a regular basis. Today, I bought some Deep Freeze spray which seems to be helping my neck which is good however if anyone has any suggestions/advice for me please do leave a comment or get in touch another way. Thank you!

Again, I apologise for not posting in a while, I promise I won't leave it this long again! Thank you for  taking the time to read this post and I'll speak to you guys soon!

Evie x