Happy New Year!
I hope you all have a fabulous 2018 :)
Evie :) x
Tuesday, 2 January 2018
Friday, 27 October 2017
7,000 pageviews for Living with Cerebral Palsy!
Hello everyone,
I haven’t posted in ages, I’m so sorry! I’ve been really busy with school and my Grandad hasn’t been very well in hospital for the past six weeks therefore I haven’t had any spare time to post. I hope you are all well and are easing back into the new academic year, I realise we’re already half way through the first term but it’s been very full on for me! ;)
First of all, I just wanted to let you guys know that we’ve hit 7,000 pageviews! This is huge and shows that people are reading and sharing my blog which is such a nice thought. The more people this blog reaches, the more awareness will be spread about Cerebral Palsy. I’m stunned about how far this blog has grown over the past year or so, it’s truly incredible and it wouldn’t have happened without each and every one of you: my readers. I THANK YOU from the bottom of my heart. Let’s just keep this going, if you know anyone who might benefit from reading my blog, please just share the link! Obviously, I’ll have to do my bit too, which will, definitely, be to post more often about various different topics: as I always say, if you do have any suggestions/requests please don’t hesitate to contact me! I’d love to hear your ideas. I think that is a plan: together we can continue to help this blog grow and thrive to ultimately acheive worldwide awareness for Cerebral Palsy.
On the subject of awareness, on Friday 6th October it was Worldwide Cerebral Palsy Day and I cannot thank my friends and school for all the support! It was truly incredible and touching, by the end of the day half the school and most of the teachers were wearing handmade badges with the green awareness ribbon on them (special thanks goes out to everyone in 10AOK for making these and handing them out to anyone they saw!). Everyone in my class had green ribbon tied around their ponytails as well. The best bit though was if anyone asked why we were wearing green, my classmates would happily explain and by doing this, further awareness was being spread! We also did a special assembly on the following Monday, focusing on what CP is and how you can help people with the condition. Honestly, it was so nice to see everyone getting involved as there are 17 million people across the globe living with Cerebral Palsy and not everyone gets the adequate care or assistance they need to be able to reach their full potential. Thank you to everyone who helped spread awareness, you’ve made a difference!
Something really exciting happened a couple of weeks ago, something I had been looking forward to for months. On Saturday 14th October, it was the CP Teens UK annual charity Ball! It was such a lovely night, I cannot believe I have to wait nearly a year for the next one! I met so many incredible people and learned an awful lot too, one thing being that if I had plucked up the courage to wear heels I would have been in agony by the second hour so thankfully for me, I went for slightly more sensible footwear, some navy blue fringed ankle boots! I had so much fun and would go back to that beautiful night in a heartbeat! If you would like to see the photos from the evening, please visit the CP Teens UK Facebook Page :)
In other news, I’m finally having a physio appointment next Wednesday which hopefully will be great as I am in great need of one. Some how I’ve managed to injure my left hip and it’s been agony when walking and standing for about a week now so I’ll be very grateful to be able to get some advice! It’s nearly the end of half term, I go back to school on Monday. This half term, I haven’t really done much apart from sleep, recover, sleep, recover and more sleep! But to be honest, I think that’s what my body needed: a break from the 11 hour school days to just do nothing but relax. I’m looking forward to going back but I’m also slightly worried about how tired I’m going to be getting and whether my body can cope with that but I love the school to pieces so will do anything to make it work. I’ll keep you updated. Seizure update: I’m very stable at the moment which is good but I still suffer from side effects of the AEDs, drowsiness being the main one which is awfully annoying! But I guess I just have to pace myself and see how I go.
Thank you very much for reading and if you haven’t already, please can I ask you to join my mailing list so you’ll receive an email every time I post, which let’s be honest isn’t that often so I like to think of it as a gentle reminder ;) you can join by entering your email address into the box below ‘Follow by email!’ at the top of this page to your right! :)
Thanks again,
Evie :) x
I haven’t posted in ages, I’m so sorry! I’ve been really busy with school and my Grandad hasn’t been very well in hospital for the past six weeks therefore I haven’t had any spare time to post. I hope you are all well and are easing back into the new academic year, I realise we’re already half way through the first term but it’s been very full on for me! ;)
First of all, I just wanted to let you guys know that we’ve hit 7,000 pageviews! This is huge and shows that people are reading and sharing my blog which is such a nice thought. The more people this blog reaches, the more awareness will be spread about Cerebral Palsy. I’m stunned about how far this blog has grown over the past year or so, it’s truly incredible and it wouldn’t have happened without each and every one of you: my readers. I THANK YOU from the bottom of my heart. Let’s just keep this going, if you know anyone who might benefit from reading my blog, please just share the link! Obviously, I’ll have to do my bit too, which will, definitely, be to post more often about various different topics: as I always say, if you do have any suggestions/requests please don’t hesitate to contact me! I’d love to hear your ideas. I think that is a plan: together we can continue to help this blog grow and thrive to ultimately acheive worldwide awareness for Cerebral Palsy.
On the subject of awareness, on Friday 6th October it was Worldwide Cerebral Palsy Day and I cannot thank my friends and school for all the support! It was truly incredible and touching, by the end of the day half the school and most of the teachers were wearing handmade badges with the green awareness ribbon on them (special thanks goes out to everyone in 10AOK for making these and handing them out to anyone they saw!). Everyone in my class had green ribbon tied around their ponytails as well. The best bit though was if anyone asked why we were wearing green, my classmates would happily explain and by doing this, further awareness was being spread! We also did a special assembly on the following Monday, focusing on what CP is and how you can help people with the condition. Honestly, it was so nice to see everyone getting involved as there are 17 million people across the globe living with Cerebral Palsy and not everyone gets the adequate care or assistance they need to be able to reach their full potential. Thank you to everyone who helped spread awareness, you’ve made a difference!
Something really exciting happened a couple of weeks ago, something I had been looking forward to for months. On Saturday 14th October, it was the CP Teens UK annual charity Ball! It was such a lovely night, I cannot believe I have to wait nearly a year for the next one! I met so many incredible people and learned an awful lot too, one thing being that if I had plucked up the courage to wear heels I would have been in agony by the second hour so thankfully for me, I went for slightly more sensible footwear, some navy blue fringed ankle boots! I had so much fun and would go back to that beautiful night in a heartbeat! If you would like to see the photos from the evening, please visit the CP Teens UK Facebook Page :)
In other news, I’m finally having a physio appointment next Wednesday which hopefully will be great as I am in great need of one. Some how I’ve managed to injure my left hip and it’s been agony when walking and standing for about a week now so I’ll be very grateful to be able to get some advice! It’s nearly the end of half term, I go back to school on Monday. This half term, I haven’t really done much apart from sleep, recover, sleep, recover and more sleep! But to be honest, I think that’s what my body needed: a break from the 11 hour school days to just do nothing but relax. I’m looking forward to going back but I’m also slightly worried about how tired I’m going to be getting and whether my body can cope with that but I love the school to pieces so will do anything to make it work. I’ll keep you updated. Seizure update: I’m very stable at the moment which is good but I still suffer from side effects of the AEDs, drowsiness being the main one which is awfully annoying! But I guess I just have to pace myself and see how I go.
Thank you very much for reading and if you haven’t already, please can I ask you to join my mailing list so you’ll receive an email every time I post, which let’s be honest isn’t that often so I like to think of it as a gentle reminder ;) you can join by entering your email address into the box below ‘Follow by email!’ at the top of this page to your right! :)
Thanks again,
Evie :) x
Friday, 25 August 2017
My summer break so far and what I have been up to!
Hello guys!
How is everyone doing? It's been a while since I last posted and I have been up to rather a lot during my summer holiday therefore in this post I will tell you all about it!
Before I continue, I would just like to congratulate my fellow blogger and close friend, Chloe Tear, for taking part in Scope's campaign to change attitudes towards disability and her amazing interview this morning on BBC Breakfast discussing this issue! Well done Chloe, you were incredible! If you would like to read Chloe's blog, go to the 'Links' page!
As I said in my previous post, I went to Mallorca on 10th July. This was the first time I had been abroad since having seizures therefore I was very relived that it went smoothly seizure wise. Unfortunately however, there were several issues with the travel company we booked with therefore the first few days were extremely stressful and upsetting. The hotel did all they could to help us enjoy the rest of our holiday and I'm so thankful to them. Before I went, I did have some concerns about flying with Epilepsy as it was a new experience for my family and I but I'm happy to report that I didn't have any major seizures on the plane. Yay! If you would like to see some holiday snaps, please check out the 'Photos' page!
After we came back from Mallorca, I had a few days just lazing about the house to recover and then I went to stay at my Grandparents for a couple of nights which was lovely! They live near the sea so I was able to swim everyday which was lovely, there is nothing I like better than swimming in the sea at the beach I was pretty much brought up on. When we younger, my sister and I were convinced we were mermaids! Sadly, since I've started having seizures I haven't been able to swim as freely as I would like as I now wear a flotation jacket just in case I was to start seizing in the water.
Starting on 27th July, my Dad and I went to Camp Bestival which is a relatively small music festival held in Lulworth Castle, Dorset. This was our 7th consecutive year going and as you can probably tell, it has kind of become a tradition in our house! It was extremely enjoyable despite the wet weather and mud! There weren't that many famous artists playing therefore we sent most of our time in the Comedy Tent which was great fun! Again, I had to adjust my festival experience due to having seizures: making sure I didn't get too tired, remembering to take my AEDs and avoiding flashing lights as much as possible which you can probably gather is quite a difficult thing to do at a music festival! We couldn't watch any acts in the evenings as this is when they would start using strobe and other lighting effects which trigger my seizures. However, even with these adjustments, I still managed to get into the festival vibe and thoroughly enjoy myself! I'm already looking forward to Camp B 2018! ;)
A couple of days into August, I went to be fitted for my new school uniform! I am SO excited to go back and absolutely can't wait! We start on Monday 4th September and it can't come soon enough. If any of you are wondering, I think I've decided to take triple Science, Geography and Spanish for my GCSE options as well as Maths, English Language, English Literature and Religious Studies (which are all compulsory) leaving me with a total of nine GCSEs.
On 31st July, my Auntie and eight year-old cousin arrived to visit from Belgium. It was lovely seeing them again and as they stayed this my Grandparents, we will able to go to the beach with them most days! We only get to see them approximately once a year so it was lovely to catch up and see how much my cousin had grown!
On 12th August, my Grandparents did what they have done for several years now and hired a beach hut for a week for us which was extremely generous so THANK YOU! It was a lovely week and full of many swims in the sea which made it even better! Again, I stayed with my Grandparents for several nights during that week which was really nice and I enjoyed it so very much.
Over the past week or so, I have been doing several hours of volunteer work at my local library which I really enjoy and find very rewarding. I spend my time working for the Summer Reading Challenge which is a programme set up to encourage children from the age of four to read! I basically sit at a desk and children come up to me and say they have read more books and I give them stickers, once they have finished the challenge, they receive a certificate and medal. It's lovely when the children enjoy describing the storyline of the book they have just read and their favourite parts etc!
I have just over a week left of my summer holiday and I have to say it has really flown by! The good news is that my seizures have continued to be pretty stable therefore I'm feeling quite positive about that aspect! I have an appointment with my specialist neurologist in Southampton on 18th September (my sixteenth birthday!) so that will hopefully all go well and I'll update you afterwards! My Dad has the whole of next week off work so we can do things as a family which will be nice. My sister received her A-Level results last week and has got into Reading University!!!! Well done Grace, all your hard work has finally paid off, I'm so proud of you! It will be strange to be the only child in the house and will definitely take some getting used to!
I apologise for this very long post but I had so much to update you guys on! :) I'm debating whether to set up a Facebook page to run along side this blog so I can do live Q&A sessions and other things! Do you think that would be a good idea and would you enjoy it? Please let me know your thoughts by either commenting on this post on contacting me another way. Thank you for reading and I hope you are all having lovely summers!
Evie :) x
How is everyone doing? It's been a while since I last posted and I have been up to rather a lot during my summer holiday therefore in this post I will tell you all about it!
Before I continue, I would just like to congratulate my fellow blogger and close friend, Chloe Tear, for taking part in Scope's campaign to change attitudes towards disability and her amazing interview this morning on BBC Breakfast discussing this issue! Well done Chloe, you were incredible! If you would like to read Chloe's blog, go to the 'Links' page!
As I said in my previous post, I went to Mallorca on 10th July. This was the first time I had been abroad since having seizures therefore I was very relived that it went smoothly seizure wise. Unfortunately however, there were several issues with the travel company we booked with therefore the first few days were extremely stressful and upsetting. The hotel did all they could to help us enjoy the rest of our holiday and I'm so thankful to them. Before I went, I did have some concerns about flying with Epilepsy as it was a new experience for my family and I but I'm happy to report that I didn't have any major seizures on the plane. Yay! If you would like to see some holiday snaps, please check out the 'Photos' page!
After we came back from Mallorca, I had a few days just lazing about the house to recover and then I went to stay at my Grandparents for a couple of nights which was lovely! They live near the sea so I was able to swim everyday which was lovely, there is nothing I like better than swimming in the sea at the beach I was pretty much brought up on. When we younger, my sister and I were convinced we were mermaids! Sadly, since I've started having seizures I haven't been able to swim as freely as I would like as I now wear a flotation jacket just in case I was to start seizing in the water.
Starting on 27th July, my Dad and I went to Camp Bestival which is a relatively small music festival held in Lulworth Castle, Dorset. This was our 7th consecutive year going and as you can probably tell, it has kind of become a tradition in our house! It was extremely enjoyable despite the wet weather and mud! There weren't that many famous artists playing therefore we sent most of our time in the Comedy Tent which was great fun! Again, I had to adjust my festival experience due to having seizures: making sure I didn't get too tired, remembering to take my AEDs and avoiding flashing lights as much as possible which you can probably gather is quite a difficult thing to do at a music festival! We couldn't watch any acts in the evenings as this is when they would start using strobe and other lighting effects which trigger my seizures. However, even with these adjustments, I still managed to get into the festival vibe and thoroughly enjoy myself! I'm already looking forward to Camp B 2018! ;)
A couple of days into August, I went to be fitted for my new school uniform! I am SO excited to go back and absolutely can't wait! We start on Monday 4th September and it can't come soon enough. If any of you are wondering, I think I've decided to take triple Science, Geography and Spanish for my GCSE options as well as Maths, English Language, English Literature and Religious Studies (which are all compulsory) leaving me with a total of nine GCSEs.
On 31st July, my Auntie and eight year-old cousin arrived to visit from Belgium. It was lovely seeing them again and as they stayed this my Grandparents, we will able to go to the beach with them most days! We only get to see them approximately once a year so it was lovely to catch up and see how much my cousin had grown!
On 12th August, my Grandparents did what they have done for several years now and hired a beach hut for a week for us which was extremely generous so THANK YOU! It was a lovely week and full of many swims in the sea which made it even better! Again, I stayed with my Grandparents for several nights during that week which was really nice and I enjoyed it so very much.
Over the past week or so, I have been doing several hours of volunteer work at my local library which I really enjoy and find very rewarding. I spend my time working for the Summer Reading Challenge which is a programme set up to encourage children from the age of four to read! I basically sit at a desk and children come up to me and say they have read more books and I give them stickers, once they have finished the challenge, they receive a certificate and medal. It's lovely when the children enjoy describing the storyline of the book they have just read and their favourite parts etc!
I have just over a week left of my summer holiday and I have to say it has really flown by! The good news is that my seizures have continued to be pretty stable therefore I'm feeling quite positive about that aspect! I have an appointment with my specialist neurologist in Southampton on 18th September (my sixteenth birthday!) so that will hopefully all go well and I'll update you afterwards! My Dad has the whole of next week off work so we can do things as a family which will be nice. My sister received her A-Level results last week and has got into Reading University!!!! Well done Grace, all your hard work has finally paid off, I'm so proud of you! It will be strange to be the only child in the house and will definitely take some getting used to!
I apologise for this very long post but I had so much to update you guys on! :) I'm debating whether to set up a Facebook page to run along side this blog so I can do live Q&A sessions and other things! Do you think that would be a good idea and would you enjoy it? Please let me know your thoughts by either commenting on this post on contacting me another way. Thank you for reading and I hope you are all having lovely summers!
Evie :) x
Saturday, 8 July 2017
Update with Regards to School
Hello everyone!
I thought I'd just write a quick and short post just to update you about my school trial that I mentioned in my previous post.
The trial went extremely well, I really do love the school and everyone in it. I am therefore pleased to tell you that I will be staying there which is so amazing! As of last Thursday, it's our Summer Holidays and I'm going to Mallorca for a week on Monday. I will update you about how Mallorca was and include photos when I get back!
Apart from that, there is not much to report. I'm looking forward to my two months off and will take full advantage of it as much as possible!
I'm sorry this was very short but I'll write a post in a couple of weeks which will far more detailed!
Thank you for reading,
Evie :) x
I thought I'd just write a quick and short post just to update you about my school trial that I mentioned in my previous post.
The trial went extremely well, I really do love the school and everyone in it. I am therefore pleased to tell you that I will be staying there which is so amazing! As of last Thursday, it's our Summer Holidays and I'm going to Mallorca for a week on Monday. I will update you about how Mallorca was and include photos when I get back!
Apart from that, there is not much to report. I'm looking forward to my two months off and will take full advantage of it as much as possible!
I'm sorry this was very short but I'll write a post in a couple of weeks which will far more detailed!
Thank you for reading,
Evie :) x
Friday, 16 June 2017
I'm sorry...
Hello everyone!
I thought I'd post today because I feel so guilty for leaving you hanging and not posting in ages. I'm sorry. I will try and explain what has been happenning in my life and why I haven't been able to post. Thank you to everyone reading this and sticking by me, it truly means a lot and I really appreciate it so thank you! :)
I've had a very different but exciting past few weeks as I have been trialling a new school. It has been tiring but I'm absolutely loving it! Just to be clear, I liked my previous school however it is extremely big and I just felt a smaller school would suit me better. I've actually gone two weeks today and I'm feeling so much more positive. This school has an extremely gentle and caring aspect to it and for me this has been really nice. I have made lots of new friends who are lovely and I'm generally just loving being there. The days are longer: I get up at 6:30am and have to be on the minibus by 7:35am so it's an early start for me! Lessons finish at 4:30pm however the minibus doesn't arrive until 6 o'clock meaning there is a bit of time inbetween either to get work done or attend a club. I arrive back at home at around 6:50pm therefore it's an extremely long day but I am getting used to it...slowly! I have three weeks of my trial remaining and then hopefully they will offer me a place for September which I will be delighted to accept!
Anyway, because of these long days I haven't had much time to post but I'm finally getting round to it now (yes, I realise it's a bit late but oh well!). I've also had to sit eight end of year exams therefore many of my short evenings have been spent revising. However, luckily exams are over now and the stress is off! I've started getting a few of my results back and I've very pleased since I had only been at the school for three days before I sat my first exam and with the meds I'm on, I do regularly suffer from brain fog!
With the school gossip over, I'll very quickly update you about the rest of my life. I had my brain MRI but I haven't received the results from that yet which I must remember to chase up! In terms of seizures, my meds have been stable for quite a while now and my seizures are decreasing (praise the lord) with on average only one major seizure per month which is incredible. Hopefully, this summer we may be going abroad which will be lovely as I've had to cancel two holidays due to my condition being too unstable. But if I do get to go abroad, I'll embrace every moment as I have been praying for this for months and months! To be honest, that is about all that has been going on in my life over the past month (I know, not very exciting!) my time has mainly been taken up with school things and although that may sound annoying, I'm loving every moment!
Once again, I'm sorry it's been so long and I also can't apologise enough for how uninteresting this post has been but I don't lead an incredible life, I'm just grateful for the little things! Thank you for getting to the end of this post without dying of boredom, I do appreciate it! ;)
I promise to speak soon,
Evie :) x
Saturday, 13 May 2017
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.
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
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 |
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
Sunday, 2 April 2017
School with Cerebral Palsy
Hello everyone,
I hope you have all had a lovely week. Today I thought I'd
post about what school is like with Cerebral Palsy. I had a suggestion from Sam
to do this post so thank you for your input.
I really don't know where to start, I have been in school
for nearly eleven years now and have attended three different schools. I have
had very negative experiences but also extremely positive ones too. I will
start at the very beginning and tell you about my first school. In the UK, we
start school when we're four years old however most people will go to preschool
before that for a couple of years. I went to preschool from the age of two and
a half, it was connected to my first school where my sister was. They were
really supportive and did everything they could so that I could be like any
other toddler and also, because I was so young, I didn't really realise or
think I was any different from anyone else. Yes, I had to wear splints and I
was a bit more 'wobbly' than the other kids but nobody really cared, as you do
in preschool I could walk up to someone, spend half an hour playing in the sand
pit and next thing you know, we'd be best friends. That was just how it worked,
everyone was so young and innocent, they didn't care who they were seen with or
what they looked like, they just enjoyed the simple pleasures of life.
At the age of four, it was time to go to school and start
learning. The first few years were fine, I played mainly, did some simple numeracy,
literacy and maybe if I was lucky I'd learn some IT skills. However, it
was too good to last. At the age of around seven, I began noticing my
disability and differences, I remember questioning an awful lot of things,
including 'why did god put me in this body?', To be honest, even to this day I
still ask myself that and I don't think I'll ever find an answer that will
satisfy me. Maybe, it's because I'm a stronger person than I would have been
without my disability? I don't know but to be honest I am really happy with my
body. Yes, I have bad days where I do question things but then again doesn't
everybody? Right, I feel like I've drifted off topic slightly so let’s get back
to it. I started doing daily physio at school with a TA, who I know will
probably be reading this and she was incredible and made my entire school
experience so much more enjoyable. Thank you! The physio exercises were tough
and as a small child, I often rebelled against them however I now know that if
I hadn't done them all those years ago, I'd be much worse today. For the
remainder of first school, nothing much changed, I still generally fitted in
and had a good time. I learnt a lot whilst still having fun!
At the age of nine and at the end of Year 4, it was time to
move on from the school which I had been at for five years to middle school
which was four times the size! I think moving from first school to middle
school is a big jump for any child but because of my disability I believe the
move was even tougher. Before we go on any further, I just like to mention that
throughout my school years I've always had full time 1:1 support, this means
that I have a TA with me every lesson. One major change that I had to endure
from first school to middle school was that we had to move to a different
classroom for each lesson. Previously, I had been in one classroom throughout
the entire day so I didn't have to move around much. The increased movement
meant there was a much higher risk of falling and therefore injury. I was
extremely tired for the first few months because my body was having to work so
much harder, all in all though the first two years of middle school were pretty
good. A couple of months into Year 7 however my health began to deteriorate, I
was experiencing very bad back pain and increased muscle spasms. As a result of
this, I had almost a term off school because I was in so much pain. When I
came back, sadly most of my friends who were there before had moved
on and forgot about me. I can fully understand that they had to make new
friends in my absence but unfortunately when I did come back they weren't
willing to welcome me into their new group of friends. As
you can probably imagine, this lead to me feeling very down and sometimes
depressed, it is a well known fact that your pain tolerance is
dramatically reduced when you're mood isn't great. So there I was, in pain and
being excluded from friendship groups. It was NOT a fun year. In Year 8, I
continued to be bullied but even worse this time, I would be called names, be
excluded from anything and everything and people would make up stories about me
and say that I'd done horrible things when I hadn't. Even though in some ways
Year 8 was worse than Year 7, I think I coped with it better because I was in
less pain and I tried not to let the bullies bring me down. My attendance was a
lot better and I realised that it wasn't long until I would leave that school
and never have to speak to my 'friends' ever again. I could just leave them
behind with all the awful memories and start fresh at upper school.
I think another reason why I hated that school was because they weren't
supportive or equipped to help people with physical disabilities, I was the
only physically disabled child there and I felt really alone.
When I was thirteen, I finally left middle school and came
to my current upper school. Most people were really nervous about leaving
but I couldn't wait! All I wanted was a fresh start. I am currently in Year 10
and taking my GCSE options. This school is definitely a lot better than my
middle school. They're really supportive and caring. I get daily physio is
a specialised department which is incredible because before I barely was
allowed to even do it and when I did, I was in a room so small it felt
like a cupboard! It is also nice because everywhere is accessible and there are
about fifteen students in total with physical disabilities so I have people to
talk to who I can relate with. The lessons are really good as well and most of
the teachers are really supportive and will do anything they can to make
sure you're included and just like any other student. The support staff
are amazing too and since I have started having seizures, they are not fazed
and know what to do which is a reassurance. I have made some really brilliant
new friends both in my tutor group and in lessons. Yes, they are still the
odd one or two people who are bitchy or discriminative but I just try to
ignore them and focus on the people who really do care. Obviously, the past few
months haven't been great with the seizure and medication but overall I
enjoy school and I am absolutely loving that I am now back full time after over
three months!
In other news, I pick up my new splints and orthopaedic
shoes on Wednesday which will be good as I have been feeling a lot less stable
over the past few months so hopefully this will help. On a slightly more
negative note, I had quite a large cluster of seizures lasting over half an
hour on Thursday therefore, because of the school's protocol, I was taken up to
hospital by ambulance. Luckily, I wasn't admitted and after about an hour and a
half I was discharged from A&E. This has left me extremely tired and I'm
still in quite a lot of pain now but I am getting better and before Thursday I
hadn't had a large seizure in almost a month so that's a positive. I am still
awaiting my EEG results but I should hear from my doctor soon who hopefully
will be able to give my family and I more information about the nature of
my seizures which will be good. Thank you again Sam for suggesting this topic and I hope you have all enjoyed reading this post.
Thank you,
Evie :) x
Saturday, 25 March 2017
Cerebral Palsy awareness, EEGs and new splints!
Hello!
Before I start this very detailed and probably long blog post, I have to apologise for the lack of posts over the past few weeks. I am sorry I haven't posted for a while, I have been busy and tired but hopefully this post will make up it as this is a huge update about my life! Anyway, let's go on.
First of all, I like to thank the people who have got into contact with me regarding this blog! It has been lovely to hear from you! If you wish to get in touch with me whether it's with a question, idea or just to chat please refer to the 'contact' tab! I look forward to hearing from you :)
Well, what a busy few weeks I have had! I don't know where to start. It's Cerebral Palsy Awareness day! Approximately 17 million people worldwide have Cerebral Palsy, it is so important that we raise awareness. Even though 1 in 500 babies are born with Cerebral Palsy, the majority of people probably don't really know what the condition entails. It is our job to raise as much awareness as possible therefore people will become more educated and less afraid of becoming friends with someone with CP.
Last week, I began doing full days at school which was such an incredible feeling as I hadn't done a full day since December 2016 so this was an amazing achievement even though it may seem small! I have now done 7 full days and yes I may be tired but this has been my goal since Christmas so I honestly couldn't be happier!
My anti-epileptic drugs seem to have taken a really positive affect over the past few weeks and my seizures have been dramatically reduced, I have gone from having seizures several times a day to once or twice a week, this is a huge achievement and I definitely am feeling more positive. On Wednesday, I had a 48 hour home EEG, ECG and video. This meant that I had 25 electrodes glued onto my scalp to measure my brainwaves, 2 wires attached to my chest to monitor my heartrate and breathing and a very high-tech camera with infrared to film me 24hrs a day. I had to go up to Poole three times; firstly to have it all fitted, secondly after 24 hours to get the batteries changed and the data synched and lastly to get it all removed and to make sure the data was safely downloaded. I had one seizure during the test so hopefully now they have captured that, they will be able to give my family and I more information and a firm diagnosis. So now, all I have to do is wait as it will take the medical professionals a few weeks to work through the data and understand what is going on inside my brain! I have an inpatient EEG, ECG and video booked for Monday 10th April so if they don't get all the information they need from this test, I will be admitted for five days and they will try and capture more and different seizures.
On another topic, I had an orthotic appointment a couple of weeks ago and I am getting two new AFO splints (for my feet, ankles and legs) instead of just the one I have for my left foot at the moment. I am also getting a new pair of orthopaedic shoes as the soles have started falling apart on my current ones. For people who have never had splint casting done before, basically it is the same as a plaster cast which you would have for a broken leg apart from they are removed and used to mould my splints so they fit my feet correctly. I have had AFOs on and off for my entire life but I haven't worn two since I was about ten so it will be interesting to see if and what difference they make to not only my walking but my pain as well. I chose purple for the colour of course!
Thank you for reading this awfully long update post, I hope it didn't bore you too much! ;) By the way I am about to hit 4,000 page views which is absolutely amazing and it's all down to you guys, my readers so thank you!
I hope you enjoy the rest of your weekend,
Evie :) x
Before I start this very detailed and probably long blog post, I have to apologise for the lack of posts over the past few weeks. I am sorry I haven't posted for a while, I have been busy and tired but hopefully this post will make up it as this is a huge update about my life! Anyway, let's go on.
 |
| Born at 29 weeks |
Well, what a busy few weeks I have had! I don't know where to start. It's Cerebral Palsy Awareness day! Approximately 17 million people worldwide have Cerebral Palsy, it is so important that we raise awareness. Even though 1 in 500 babies are born with Cerebral Palsy, the majority of people probably don't really know what the condition entails. It is our job to raise as much awareness as possible therefore people will become more educated and less afraid of becoming friends with someone with CP.
Last week, I began doing full days at school which was such an incredible feeling as I hadn't done a full day since December 2016 so this was an amazing achievement even though it may seem small! I have now done 7 full days and yes I may be tired but this has been my goal since Christmas so I honestly couldn't be happier!
 |
| EEG Camera |
 |
Splint cast
|
Thank you for reading this awfully long update post, I hope it didn't bore you too much! ;) By the way I am about to hit 4,000 page views which is absolutely amazing and it's all down to you guys, my readers so thank you!
I hope you enjoy the rest of your weekend,
Evie :) x
Monday, 6 March 2017
Living with Medication!
Hiya,
I hope you all had a lovely weekend. This post us all about the ups and downs of living with regular medication. I have been on lots of different meds so please be aware this may be a long one!
As all of you probably know, I have Cerebral Palsy. Cerebral Palsy is caused by brain injury before, during or just after birth. I was born at 29 weeks and had a small brain haemorrhage which led to me having brain damage and as a result I have Spastic Diplegic Cerebral Palsy. Spastic Diplegia basically means all my muscles are stiffer than they should be, all four of my limbs are affected but my legs are more affected than my arms and my left side is worse than my right.
Let's move on to medication, as my muscles are stiff I can experience painful spasms, these got drastically worse when I was about ten or eleven. To reduce my discomfort, I was prescribed Baclofen, which is a muscle relaxant, this medication really helped my spasms but it also loosened me up generally so I was able to do more and walk further which was a bonus! I have now been on Baclofen at 80mg per day for over four years and it has been really beneficial to me.
As a result of having CP, I experience chronic pain, CP is just a very painful condition! Aha. Therefore, I take painkillers frequently, mainly Paracetamol but on a bad day especially after cluster seizures, I have been prescribed Codeine which really does help.
Recently, as you may know I have been experiencing seizures, since last May to be precise. In December 2016, I was diagnosed with Epilepsy and put on Anti Epileptic Drugs called Levetiracetam (Keppra) and Clonazepam. I am on top dose now and my seizures, even though I am not seizure free, have been significantly reduced. I am on 1250mg twice a day of Keppra and 1.5mg of Clonazepam at night.
So there you go, all my medications! 23 pills a day plus painkillers if needed, everyone says I must rattle! Aha. I have previously been on Diazepam but as I was put on Clonazepam to help control my seizures, there has been no need for that over the past few months. I also take vitamins once a day because apparently they can help reduce pain?! Whether this is true or not I'll never know but it is always good to take extra Vitamin D!
I am sorry if this post hasn't been very interesting but I really aim to post weekly and I didn't want to let anyone down. To be honest, I am struggling for topics so please if you have any ideas please comment, email or Facebook message me! I'd love to hear from you. If you are looking for something slightly more exciting and interesting I'll link a few of my more 'popular' blog posts for you to check out:
http://livingwithcerebralpalsyevie.blogspot.co.uk/2017/02/what-is-it-like-to-have-friend-with.html
What is it like to have a friend with Cerebral Palsy?
http://livingwithcerebralpalsyevie.blogspot.co.uk/2017/02/oh-joys-of-hospital-appointments.html
Oh the joys of hospital appointments!
http://livingwithcerebralpalsyevie.blogspot.co.uk/2017/02/common-stereoypes-surrounding-disability.html
Common Stereotypes Surrounding Disability
http://livingwithcerebralpalsyevie.blogspot.co.uk/2017/02/an-old-facebook-post-of-mine.html
An old Facebook post of mine
Here is a link to my Facebook so if you'd like to get in touch please do!
https://www.facebook.com/evie.lemon.18
Thank you for reading and I hope you have a lovely rest of your day.
Evie :) x
I hope you all had a lovely weekend. This post us all about the ups and downs of living with regular medication. I have been on lots of different meds so please be aware this may be a long one!
As all of you probably know, I have Cerebral Palsy. Cerebral Palsy is caused by brain injury before, during or just after birth. I was born at 29 weeks and had a small brain haemorrhage which led to me having brain damage and as a result I have Spastic Diplegic Cerebral Palsy. Spastic Diplegia basically means all my muscles are stiffer than they should be, all four of my limbs are affected but my legs are more affected than my arms and my left side is worse than my right.
Let's move on to medication, as my muscles are stiff I can experience painful spasms, these got drastically worse when I was about ten or eleven. To reduce my discomfort, I was prescribed Baclofen, which is a muscle relaxant, this medication really helped my spasms but it also loosened me up generally so I was able to do more and walk further which was a bonus! I have now been on Baclofen at 80mg per day for over four years and it has been really beneficial to me.
As a result of having CP, I experience chronic pain, CP is just a very painful condition! Aha. Therefore, I take painkillers frequently, mainly Paracetamol but on a bad day especially after cluster seizures, I have been prescribed Codeine which really does help.
Recently, as you may know I have been experiencing seizures, since last May to be precise. In December 2016, I was diagnosed with Epilepsy and put on Anti Epileptic Drugs called Levetiracetam (Keppra) and Clonazepam. I am on top dose now and my seizures, even though I am not seizure free, have been significantly reduced. I am on 1250mg twice a day of Keppra and 1.5mg of Clonazepam at night.
So there you go, all my medications! 23 pills a day plus painkillers if needed, everyone says I must rattle! Aha. I have previously been on Diazepam but as I was put on Clonazepam to help control my seizures, there has been no need for that over the past few months. I also take vitamins once a day because apparently they can help reduce pain?! Whether this is true or not I'll never know but it is always good to take extra Vitamin D!
I am sorry if this post hasn't been very interesting but I really aim to post weekly and I didn't want to let anyone down. To be honest, I am struggling for topics so please if you have any ideas please comment, email or Facebook message me! I'd love to hear from you. If you are looking for something slightly more exciting and interesting I'll link a few of my more 'popular' blog posts for you to check out:
http://livingwithcerebralpalsyevie.blogspot.co.uk/2017/02/what-is-it-like-to-have-friend-with.html
What is it like to have a friend with Cerebral Palsy?
http://livingwithcerebralpalsyevie.blogspot.co.uk/2017/02/oh-joys-of-hospital-appointments.html
Oh the joys of hospital appointments!
http://livingwithcerebralpalsyevie.blogspot.co.uk/2017/02/common-stereoypes-surrounding-disability.html
Common Stereotypes Surrounding Disability
http://livingwithcerebralpalsyevie.blogspot.co.uk/2017/02/an-old-facebook-post-of-mine.html
An old Facebook post of mine
Here is a link to my Facebook so if you'd like to get in touch please do!
https://www.facebook.com/evie.lemon.18
Thank you for reading and I hope you have a lovely rest of your day.
Evie :) x
Monday, 27 February 2017
My obsession with audiobooks!
Hello lovely readers,
This is a bit of a random post of let's just go with it. I am going to be talking about my love of audiobooks.
I don't actually enjoy reading that much. I know you may be thinking 'no!' or 'why not?' but it's better to be honest! Before you wonder, I DO read but mainly articles or non-fiction, I don't really like fiction. However, if I find a novel I like, I will read it like there is no tomorrow whether I'm in the bath, eating or just about to go to bed, I'll get through it in a few days and then probably read it a second time a few months later! I will start books but unless I actually enjoy it, I'll usually just stop when I realise that this book just isn't for me, in other words I won't just power on through and hope it gets better. So basically I am not an avid reader, I have read maybe two dozen actual long novels in my lifetime but the books I do read, I really enjoy.
Right, now I have explained why I don't tend to read novels I will get on and tell you about my love of audiobooks and how I came across them. At the moment, I tire easily and find it even harder to read after a long day, my brain just cannot process what my eyes are seeing so it is pretty pointless. For a lot of people, reading is what they do last thing before they go to sleep as a way to wind-down and relax. For me, I set up my sleep tracking app and my alarm, I then open 'audible' (which is an app for audiobooks) I select the book I would like to listen to, at the moment I am re-listening to Me Before You by Jojo Moyes, I put it on a sleep timer, plug my phone into charge and place it next to my pillow. I love listening to a book before I go to sleep because it means I can shift down in my bed, get comfy and just listen. I find this really calming. I don't just listen to audiobooks before I go to bed, I will sometimes put them on in the background whilst I get ready for the day or when I am tidying my room. I just find listening to books works better for me than reading them, especially now, because of my medication, I tend to be quite spacey.
The only downside of audiobooks is they tend to be almost double the price of paperbacks even when it is just a download and not a CD. I guess this is because they sell a lot less audiobooks than your average paperback. It is quite annoying though because at the moment, I've been getting through them so fast. But anyway.
I find audiobooks a great way to escape from everyday struggles and worries, just to be somewhere else in a different life for half an hour. This is the same for books and I have nothing against reading, it is just more difficult at the moment.
In other news, I have picked up my new pair of orthopaedic boots and insoles, my last pair were identical but sadly the soles started wearing through because of the way I walk but I have a new pair now so that's all good. My anti-epileptics are back up at top dose and I haven't had a 'large' seizure for almost three days so that's a small victory! I haven't heard anything about my inpatient EEG yet but it should be either this week or next.
I haven't been feeling brilliant for the past few days, I think I have some sort of bug therefore I'm sorry if this post isn't very good, I'm hopeful next week's one will be better but thank you for sticking with it!
I hope you have all had a good day.
Evie :) x
This is a bit of a random post of let's just go with it. I am going to be talking about my love of audiobooks.
I don't actually enjoy reading that much. I know you may be thinking 'no!' or 'why not?' but it's better to be honest! Before you wonder, I DO read but mainly articles or non-fiction, I don't really like fiction. However, if I find a novel I like, I will read it like there is no tomorrow whether I'm in the bath, eating or just about to go to bed, I'll get through it in a few days and then probably read it a second time a few months later! I will start books but unless I actually enjoy it, I'll usually just stop when I realise that this book just isn't for me, in other words I won't just power on through and hope it gets better. So basically I am not an avid reader, I have read maybe two dozen actual long novels in my lifetime but the books I do read, I really enjoy.
Right, now I have explained why I don't tend to read novels I will get on and tell you about my love of audiobooks and how I came across them. At the moment, I tire easily and find it even harder to read after a long day, my brain just cannot process what my eyes are seeing so it is pretty pointless. For a lot of people, reading is what they do last thing before they go to sleep as a way to wind-down and relax. For me, I set up my sleep tracking app and my alarm, I then open 'audible' (which is an app for audiobooks) I select the book I would like to listen to, at the moment I am re-listening to Me Before You by Jojo Moyes, I put it on a sleep timer, plug my phone into charge and place it next to my pillow. I love listening to a book before I go to sleep because it means I can shift down in my bed, get comfy and just listen. I find this really calming. I don't just listen to audiobooks before I go to bed, I will sometimes put them on in the background whilst I get ready for the day or when I am tidying my room. I just find listening to books works better for me than reading them, especially now, because of my medication, I tend to be quite spacey. The only downside of audiobooks is they tend to be almost double the price of paperbacks even when it is just a download and not a CD. I guess this is because they sell a lot less audiobooks than your average paperback. It is quite annoying though because at the moment, I've been getting through them so fast. But anyway.
I find audiobooks a great way to escape from everyday struggles and worries, just to be somewhere else in a different life for half an hour. This is the same for books and I have nothing against reading, it is just more difficult at the moment.
In other news, I have picked up my new pair of orthopaedic boots and insoles, my last pair were identical but sadly the soles started wearing through because of the way I walk but I have a new pair now so that's all good. My anti-epileptics are back up at top dose and I haven't had a 'large' seizure for almost three days so that's a small victory! I haven't heard anything about my inpatient EEG yet but it should be either this week or next.
I haven't been feeling brilliant for the past few days, I think I have some sort of bug therefore I'm sorry if this post isn't very good, I'm hopeful next week's one will be better but thank you for sticking with it!
I hope you have all had a good day.
Evie :) x
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