You are stronger than you think
For Purple Day I am going to be talking about my role as a Young Rep for Young Epilepsy. I have been a Young Rep for the charity for the past couple of years. In this time I have met so many incredible people that have helped me with my epilepsy journey.
I got diagnosed with absence epilepsy when I was eleven years old. It was a very daunting time and I didn’t know much about the condition. Also, I didn’t know anyone else with epilepsy which felt very isolating for me. As I grew older and started to understand my epilepsy better, my confidence grew. This led me to want to talk about epilepsy more and raise awareness about the condition.
Being part of Young Epilepsy
Young Epilepsy has helped me to not feel isolated through being a Young Rep and meeting other young people living with epilepsy. It enabled me to be part of a community that could understand or relate to my journey with epilepsy. Even though everyone’s epilepsy journey is unique and different, we will always have things in common and be able to relate to current or past experiences of living with the condition. Being a Young Rep means we can support one another and guide the charity to help meet the needs of children and young people with epilepsy.
Through being a Young Rep it enables us to use our voices, help others through what we have learnt and have an impact on the future of young people living with epilepsy. We come together to help fight the stigmas around epilepsy and make a difference in society.
Being a Young Rep has enabled me to be part of an amazing community and also provided me with many new experiences and opportunities. For example, interviews, workshops or being part of the Digital Programme Board. All these experiences have helped me to learn and develop my skills. My communication skills and confidence has grown hugely through being a Young Rep.
A supportive and active community
If I could tell eleven year old me anything, it would be that you are not alone and it will be okay. Young Epilepsy have a supportive and active community to help young people living with epilepsy. This includes information, support and advice which can be found through The Channel or The Hub. The Hub is a great community where you can talk to others about epilepsy, ask questions and find advice.
I will be forever grateful for being part of this community.
Today I am going to be sharing my experience of epilepsy and mental health. I was diagnosed with absence epilepsy at eleven years old. Since then I have been on a journey with my anxiety. Through this post I will talk about the struggles of mental health but most importantly how I overcame them.
How my anxiety started
Being diagnosed with epilepsy at the age of eleven was a daunting and confusing time. Combined with the fear of not knowing when another seizure would happen and medication side effects. I went from being a very confident and energetic girl who had never experienced anxiety to a frightened and reserved individual. My anxiety initially came from the fear of worrying when a seizure could happen. This manifested in my head and over a period of a couple of years, I became too scared to go to school. At the time I felt like I was the only one feeling this way but Epilepsy Research conducted a survey and found that “56% of adolescents with epilepsy had signs of mental health problems, and that these issues contribute to a low quality of life.”
My anxiety became so bad I would have panic attacks and it lead to me feeling very low. My panic attacks felt terrifying. I would get dizzy. I’d feel sick. My heart would race. My vision would blur. I knew something needed to be done to help get me out of this vicious cycle. But thirteen year old me was too scared and confused to talk. On reflection one thing I wish I did sooner was talk about how I felt.
The journey to control
I vaguely remember being in my early teens and my neurologist referring me to counselling. As although I didn’t talk about how I was feeling at the time, my parents knew that I needed support. I believe these sessions with the counsellor could have been very helpful but I felt too scared to talk about how I felt. This was partially down to the fact I didn’t have an understanding of what was happening. It’s so important society has a better understanding of mental health and it is spoken about more, especially as children with epilepsy are four times more likely to experience a mental health problem.
As I reached around the age of fifteen, I was still experiencing anxiety and low moods. But I learnt to focus on small steps or goals and these would then lead to helping my mental health. For example this could be, taking the dog on a walk or going to the cinema with friends. I started these small steps and gradually they turned into bigger goals over time. I started studying at a new sixth form and this really helped my confidence. I could feel the happy and energetic Jasmine returning. However, at the back of my mind I still struggled with my anxiety and the fear of if I would have a seizure. This is when I started Cognitive behavioural therapy. (https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/)
It is okay to find it overwhelming and scary at times
For me personally, cognitive behavioural therapy had a huge help on my mental health and overcoming the fears that had manifested in my brain. Also I had reached a point where I understood what was happening and felt I was able to talk about it. The more sessions I had the more I noticed the anxieties going and the confidence growing.
One thing I wish I could go and tell my younger self is that being diagnosed with epilepsy can be a lot for a child to go through, so it is okay to find it overwhelming and scary at times. I was very lucky to have the amazing support and love from my family but I was too scared to talk about how I felt. However, over time I have gathered various tips and below is a list of what has helped me:
My top tips
• Counselling - talking to someone and being open about how you feel about your mental health and epilepsy can really help.
• Cognitive behaviour therapy - is a form of talking therapy, which works on changing the way your subconscious mind thinks and reacts to situations.
• Walking - walking my dog was a great way to get exercise and fresh air.
• Time with friends or family.
• Take small steps - make achievable and small goals, these gradually build up over time and feel very rewarding.
• Spend time with pets - whether its walking my dogs or spending time on the sofa hugging and stroking them, it has always been a great way for me to relax.
• Routine and rest - getting a good routine and sleep schedule really helps me to manage my mental health.
• Be kind to yourself.
• Yoga or meditation – really helps me to have a calmer and clearer mind.
• Talk to someone - the big one for me. It is important to share with someone you trust how you are feeling so you can get the right support and help. This could be a family member, teacher, GP, friend or Young Epilepsy Helpline (01342 831342).
I am now twenty-three years old and it is fair to say from time to time I still experience moments of anxiety. But overall, I can say through the methods I have learnt how to gain control of my anxiety and am proud of how far I have come. Overall, the important factor is to not suffer in silence and talking about how you feel to someone you trust is key.
This post is starting with a throw-back to thirteen year old me. I remember when I was thirteen it was a really tough time with epilepsy and my mental health. My seizures were the worst they had ever been and I was missing more school than ever. This also had an impact on my mental health. Following on shortly after this, my health became so bad I had to become home schooled for a couple of years At this time I remember thinking to myself ‘I am never going to be able to like everyone else, I am never going to be able to live independently or go to university, I just wanted to be like my friends’. However I am very pleased to announce that twenty-three year old me has just finished my BA hons degree in Graphic Design.
"I am never going to be able to like everyone else, I am never going to be able to live independently or go to university, I just wanted to be like my friends"
As mentioned previously on my blog education, especially secondary school time has been a struggle for me, whilst managing my epilepsy. Finding the right supportive system and coping with the social side has been challenging. But the determination pays off. My education has certainly been a rollercoaster of a journey but I am very lucky to of found a university which has amazing disability support, is adaptive and understanding. On reflection when I look at the past three years my lectures have done what any kind, good teacher should do, they have offered me support to do a degree whilst managing my health. And previously I haven’t been that lucky with teachers being so understanding. I am very grateful to of had such amazing lectures and disability support. And for me this shows that even with the challenges of epilepsy with the right support and having people who listen you can do it. Which is something thirteen year old me thought was not possible.
I also wanted to touch on living independently, which I have done for the past five years. As I have spoken about before I lived in halls for the first year and a student house for second and third year. This whole process was certainly made a lot easier by meeting my incredibly kind and amazing house mates. But being able to have that independence, whilst living in a student house and knowing if I were to feel ill or have a seizures I felt I was safe. My friends knew what to do which is very important and also it enabled me to settle and feel at home.
I am so grateful to of met so many amazing and supportive people both at university. And reflecting on this and how I made my experience a smoother journey. I think it is down to being open and honest about my epilepsy and how I feel. This is something I could never have done at thirteen or even eighteen. It has definitely taken time to understand myself, my condition and what I need to tell people. I did this by taking small steps, having chosen a university that had an incredible track record for support, I felt comfortable talking to disability support about my condition and how it could affect me in a lecture of my university work. This then leads to building to discussing with the lectures and throughout the three years I made sure to keep them up to date on any changes in my health or if I was struggling. Then with my friends and house mates. Firstly, telling my house mates early on was important so I felt safe in my new environment and then as you are living with your friends they soon learn and understand how my condition affects me. I will be forever grateful to of met such an amazing group of friends.
This blog post has been a bit all over the place in terms of information and advice. But overall, I just wanted to communicate education can be challenging when having epilepsy but finding that supportive environment is so important. And I know from experience that personally if that support isn’t their then I really struggle. But having an environment that is understanding, safe and encouraging you can thrive like any other student. I was able to live independently, socialise, learn and live like all my peers. I have to say a huge thank you to my parents and family as they have always been an incredible support and my rock. Bouncing back to the start of this post, ‘I am never going to be able to like everyone else, I am never going to be able to live independently or go to university, I just wanted to be like my friends’. Well through a supportive environment I managed to do all of following, live independently, go to university and be like everyone else! I did it!
As part of Young Epilepsy’s ‘Back to University campaign’, I will be discussing my experience of living with epilepsy and attending freshers’ week at university.
Freshers' Week is a seven-day programme where new university students attend both day and night events - it can involve a lot of drinking and late nights which can be daunting for someone with epilepsy. However, I have experienced fresher’s week twice and have gathered some useful information on how to have the best and most enjoyable experience whilst still being safe. I will discuss both of my freshers’ weeks and talk about how I coped with managing my health and starting university life.
I first experienced Freshers’ when doing an Art foundation at the University of Arts London and secondly when doing my degree at The University of Gloucestershire. Freshers' week is a daunting experience for anyone and I was certainly full of mixed emotions. Of course I was very excited about moving away for the first time, but with the excitement came a lot of fear. Also, I was filled with this worry and anxiety that my body wouldn’t be able to keep up with the busy and chaotic time of freshers. However, through taking one day at a time I learned how to adapt to university life.
If you are staying in halls of residence, which I was, the other students living there will be the first people you’ll meet and bond with. On the first day, once we had settled into our rooms, I made sure to communicate to a couple of my flat mates about my condition. I was in a flat of five and decided to tell two of the people living with me who I felt most comfortable telling. I know this is scary in itself but for me this was vital for many reasons. One reason was for safety, if I had a seizure they would know what was happening and had an understanding of what to do. I also explained to them, due to my medication side effects and seizure triggers, I might not be able to come on some nights out, I won’t be drinking as much as them and I require a good night sleep. They were super understanding and just wanted to make sure I was okay.
My main seizure trigger is fatigue so as freshers’ week is full of nights out this was scary for me - but I made it work by having a balance of socialising and resting. At university when you have a night out, people normally have pre-drinks at someone’s flat before going to the club. Personally, I learnt that for me a great balance was going to pre-drinks (where I could chat and make new friends) then most of the time I would head back to my room to go to sleep instead of heading onto the club or evening fresher event. Therefore I would not be putting my health at risk and get a good night sleep. This for me is a clear example of balance and compromising as you are still meeting people, interacting and making friends but still getting enough sleep. However, if I did decide to go out to the club, I would make sure I always stayed with one of my friends from my halls of residence. And if I started to feel tired or poorly, then thankfully one of my amazing flat mates would come home with me to make sure I got back safely. If I did go to the club, then the next day I would make sure I was set for a full day of rest as I knew how important it was to allow my body to recover. This meant staying in bed, having a day of watching films and letting your body recharge.
If going to parties and nights out aren’t your thing, then don’t worry as freshers has a huge amount of day events happening. Every university will have a daytime fresher’s fair which is an amazing place to make friends and join societies. The university will provide a wide range of different societies which allow you to meet people with similar interests.
When I did my art foundation in London, I would only drink a very small amount of alcohol. My neurologist had advised me if I was going to drink alcohol only have a small amount, for example one glass of wine or a beer. But personally, I found it doesn’t mix well with my medication - it would bring out more medication side effects and I would feel drunker quicker than everyone else. I was adamant if someone offered me a drink I would decline. However, you do get the occasional person ask why you are not drinking or joining in with the drinking game, and from my experience the best thing to do is just be honest and say something like: “oh because of a medical reason.” Or if you feel you need to give more detail add on that you are epileptic. I found most people would understand straight away and move on. Be strong and don’t give into peer pressure.
When I joined the University of Gloucestershire, I had stopped drinking alcohol completely due to not liking how it mixed with my medicine. So I did my second freshers completely sober. The way I managed to still be involved with freshers was by attending more day-time events. I still made lots of friends but I also made sure to create strong bonds with my flat mates. I learnt if they are going to be a good, true friend they don’t mind that you’re not drinking as your health is important to them. So even if you aren’t into the party scene and drinking, as I am aware through personal experience epilepsy can limit this, you can still go to so many day time events and make so many friends. Not everyone does drink and there will be other people in the same boat as you.
To me, Freshers’ was about planning and balance and always remembering to put your body and how you are feeling first. There is a lot of social pressure at university, but it is important to put your health first. If I felt like my body was struggling and in need of a rest, I would stay in and watch some films. I am a strong believer that it is important to listen to how your body is feeling and don’t allow the pressure to push your health over the edge. But most importantly have fun!
Here I will summarise with some quick tips for Freshers' week -
1. Be honest and open with your friends – make sure to communicate to the people you are spending freshers with that you are epileptic and what to do if you have a seizure.
2. Drink responsibly – It is fine to say no to a drink. If you are drinking alcohol drink lots of water too. You know what is right for your body so don’t ignore that.
3. Rest – make sure you get enough sleep. For me fatigue is a big seizure trigger, therefore I would always make sure if I had gone out the night before to get enough rest the following day.
4. Attend day events – so much happens during fresher’s week in the day too. This is a great place to meet people if you are not into partying.
5. Flat mates – making effort with flat mates is important as this can provide a great set of support for you!
6. Listen to your body – Attending pre-drinks but not going to the club after was a great way for me to make lots of friends but not do the full night out. This is a great balance!
7. Eat and drink lots of water – Fresher week is a busy week but it is so important to eat and drink well to keep your body at its strongest.
8. Stay with others – When on a night out and at fresher’s events make sure to stay with someone who is aware about your condition and to know what to do if you had a seizure.
9. Medical ID bracelet – This is a great way to feel safer when out with people who don’t know about your condition.
10. Have fun! - Epilepsy can cause you to need to plan a bit more but this doesn’t mean you can’t enjoy yourself and have fun at freshers!
As part of Young Epilepsy ‘Back to University campaign’, I will be discussing my experience of living with epilepsy and moving away from home to university for the first time.
Moving away from home is an exciting stepping stone in life but can also be very daunting, especially if you have epilepsy. I first moved away from home at eighteen to go to university, this was a huge step for me. I was full of mixed emotions. I had a lot of anxieties about it to do with my epilepsy, such as: “How was I going to manage moving away from the safety of home and look after my epilepsy? How was I go to lead a ‘normal’ university life whilst balancing my health?”But I learnt as I went along and through my experiences how to manage. I will share my advice on what made it easier moving away from home to university whilst managing my condition, epilepsy.
Before choosing the university, I would do research into their student support services (disability support). I specifically chose The University of Gloucestershire because it had been rated high for their amazing disability support/student support services. I had read many great reviews online from previous students. It is very important to me that they have a strong understanding disability support system in place. In the past I haven’t had this and it makes a big difference to your education and wellbeing when the support is good and they understand you.
I would also meet with the disability team before moving to the university. This is to communicate with them what support you require from them, the university and what they can do in advance to make you feel more comfortable. For example, I expressed how important it is that it is explained to my lecturers about my condition, how it affects me and to share any of my concerns or worries. To have the support set up and someone to go to when you are in need is of great help.
I was aware the disability team had sent an email to my course leader about my condition. But I also set up meetings with my course leader and tutor to inform them about my epilepsy and how it can affect my learning. I think talking face to face and being honest is the best way to gain their understanding. I have learnt how important it is they understand what you are going through, so they can be there to support and guide you.
Another important thing to organise is signing up to a new doctor in your university town. Have an appointment with them to discuss your medical history and your epilepsy. Also it is important to set up your repeat prescription. For me these are two key things to organise at the start of term or even prior. Top tip: The more you organise before you move to university the easier and more comfortable you will feel when you arrive.
Next for me was being open and honest with friends about my condition. This allows me to feel safer and more comfortable in a new environment. I would always make sure to tell my closest flat mates and friends in my lectures about my condition: how it affects me and what to do if I have a seizure. I also gave my parents contact details to my friends. This made my parents feel more at ease about me being away from home. I felt reassured that if I was to have a bad seizure and needed to go to hospital, my friends could let my parents know right away.
For me it is important I eat regularly and healthily. Before leaving for university I literally only knew how to cook an egg and that was about it! So the summer before I moved my parents taught me some healthy, simple meals to cook which was really helpful. Also I brought an easy student cookery book. When I cooked, I would always tell one of my flat mates that I was cooking, then they would cook with me or chat to me whilst I cooked, just to be safe, in case I where to have a seizure when preparing or cooking food. I believe after eating a good warming cooked meal you can get a lot of comfort from that and feel better in yourself.
Getting enough sleep is an important part of looking after my health. This was a big worry for me when I was moving to university. What I have learnt is be strong and listen to my body. There is a lot of peer pressure at university. So you learn the importance of declining going out or a late night if you are tired and rest is needed. Sleep is so important. You feel a lot happier and settled when you had a good night sleep. I learnt my friends understood if I wasn’t going out and needed to rest because they knew about my situation.
Also, most first year students choose halls of residence. This is a great way to get into university life and make friends. However, I have learnt depending on the bedroom you have this can be noisy. Therefore when applying for you room communicate with the university accommodation team that you need a quiet room, away from the kitchen, main road, entrance door, lifts and not on the ground floor. Knowing you have a quiet, non-noise disturbed room really helps with settling in to university life; it is reassuring to know you can get a good night sleep.
Choose halls or accommodation nearest to your university campus. This depends on if your university is a campus university or not, mine weren’t. But I made sure my halls where near to the campus. This was because if I felt ill during a lecture or was tired after a day of university, I was comforted that I didn’t have far to walk back to my flat.
Take care of yourself, your mental health and take some time to go on a walk to the park or do some exercise. I joined the gym in the second year of university; this was a daunting prospect for me as I am not a sporty person! But I wanted to do it for more for well-being. Having found a routine of going to the gym in the morning, when I didn’t have lectures, really helped me settle and contributed to a healthy mind. Doing some form of exercise, yoga or meditation can help you settle quicker; stress is a seizure trigger for me and having exercise as a stress realise was a great help towards managing my epilepsy.
Overall, I learnt I am at my happiest and most settled when people around me understand my condition and know what to do if I was to have a seizure. These people include my flat mates, my friends, my lecturers and my disability support team. Establishing an environment where to feel safe in and having a support system in place is key.
Here are some of my top tips for moving away from home for the first time to university -
1. Accommodation – notify the accommodation team that you are epileptic and require good sleep for your health. Then they can provide you with a quieter room for example, not near an entrance or main road
2. Take care of yourself – sleep well and get fresh air. All these factors will help towards settling in and feeling good.
3. Meet with disability support – make a meeting before you start to communicate the support you require so they understand your situation.
4. Open days – visit the university, see their support team and accommodation to see if it will be suitable for you and your epilepsy.
5. Be honest with your friends – tell them about your condition and what to do if you have a seizure.
6. Sign up to a local doctor and pharmacy.
7. Make your university room feel like a safe haven – decorate your bedroom with lots of photos of friends, family and made it feel homely.
8. Make sure your lecturers/teachers are aware – it is so important teachers are made aware of your condition and how it affects you. Help them to understand you.
9. Eat well – learning how to cook the summer before university was a big help to me!
10. Choose halls near your university campus – this will help with fatigue and it is comforting knowing your room is only walking distance away!
This post is going to be a big one as I have not posted in a long time which you will find out why as you read on. As you may or may not know I take two medications to control my epilepsy ; Ethosuximide and Lamotrigine. These have enabled my seizures to be under control for about six years now, which I am so thankful for. However, I experience daily, life controlling side effects from these medications. This effects my day to day living.
Therefore in summer 2018 I had a discussion with my consultant and explained that I was really struggling with how bad the side effects where and how it was effecting my lifestyle. And if there is anything I could do about it. He suggested to do an EEG to see if there is any seizure activity and take it from their. I had an EEG which thankfully showed no activity. And as my seizures have been under control for six years he concluded he was happy to advise a withdrawal from one of my medications. We decided to choose lamotrigine as it was the first medication I tried and it never fully controlled my seizures just made them shorter. Ethosuximide is the one that seemed to control them. Also I thought lamotrigine was causing the challenging side affects, such extreme fatigue, dizziness, poor focus and foggy brain. Which I have been dealing with for 10 years now.
This was not an easy choice to withdraw from a medication that I have been on for ten years. It's a big safety blanket being taken away. On top of that we had to discuss this risk of withdrawal effects, seizures returning and danger of Sudden unexpected death in Epilepsy. With all this considered it took me a long time to make a choice but I was willing to see what would happen. So it was decided, I would gradually withdraw from lamotrigine.
The withdrawal :
I started the withdrawal in January 2019. I was on 400 mg a day (200 mg in the morning and at night). I would gradually reduce it by 25 mg in the morning and 25 mg in the evening every two weeks.
I was so scared, my body was use to ten years on this medication, and I didn’t know if I would have a seizure at any point. It was a really daunting experience. However I was determined to do it. The first couple of months I felt great, my energy was increasing again, I could do more and the dizziness was going. I felt human again.
But then I withdrew from 150 mg a day to 100 mg. And my body freaked out. It was clearly too much too soon. I felt like someone had brain washed me, it was so scary. I was experiencing extreme mood swings, I would randomly start crying or laughing. And I suddenly became this angry, aggressive person. And I was also extremely anxious and depressed, which lead me to just hide in bed, I rarely left the house. I also lost my appetite and every time I did eat I would feel so sick, get bad and upset stomach. It felt like it was so out of my control.
So I went to my GP and he said as it is a medication that is also given to people with bipolar you are experiencing mood changes from the withdrawal. He said it’ll pass but next time I reduce it do it by a smaller amount. On top of this I was coming the end of my second year at university and had missed weeks of lecturers. So we decided to pause the withdrawal, to let my body adapt to a lower dose and allow me time to get my university deadlines done. This pause was just what I needed as it allowed my body to gradually get back to a normal mental state, this did take a couple of months.
Once I had handed in my coursework I was back to withdrawing the medication again but this time I would do it by 25 mg a day every two weeks. I was so scared what happened before would happen again. Thankfully doing it on a lower dose, reduced the amount of withdrawal effects. So I was still experiencing anger and mild mood swings but on a manageable amount. Although I had suddenly been hit with a lot of fatigue. I feel my brain is just working super hard at the moment. So as I am typing this I am down to 25 mg in the morning and 25 mg at night. I And am hoping it will be worth it in the long run as I am already seeing the difference in me in regards to side effects. It has been a really scary experience but made me even more determined and brave.
Please remember all medication reacts differently to everyones body. And it was after many many discussions and tests with my consultant that this was the right, safe choice for me. So please don’t think about doing this without talking to your doctors.
Although it has been a challenging year with my health it has also an incredible year with a lot of amazing opportunities thanks to my blog. For Purple day through Epilepsy Action I spoke to the media about my story and it got successfully published in various newspapers, here is a link to it - https://www.dailymail.co.uk/health/article-6850769/Woman-daydreaming-actually-epileptic-seizures-kept-diagnosis-secret-FIVE-years.html. This also lead for me to do a Radio interview at BBC Wiltshire to educate people on epilepsy and the stigma surrounding it.
In February I had an incredible week of work experience at Epilepsy society in their communications team, which I am so grateful for as I learnt so much and know have a clear view on where I want to go in my career. A blog post about that is here — https://www.epilepsysociety.org.uk/blog/Jasmine-talks-epilepsy-work-experience-22-02-2019#.XTXFPC_Myu4
And at the start of the year I become a Young Ambassador for the charity Young Epilepsy, which allows me to be part of incredible projects they are doing to support young people with epilepsy.
I also ended my second year of uni with a high 2:1, which I am delighted with.
All these incredible charities I am part of have allowed me to share my story and help make a difference which I am so grateful for. It has been the most challenging year yet but also the best thanks to the amazing opportunities I have been part of.
I apologise for not posting in so long. The truth is I have been on an up and down journey over the pass several months. I started getting ill from my medication side effects, it was destroying my immune system and quickly reducing my red and white cell count. Causing a huge amount of fatigue and viruses. And I was also balancing having a crazy busy time with university. In this post I will be discussing how vitamins and minerals saved me from these awful side effects and allowed me to live a healthy, normal life again.
I was struggling hugely with my fatigue and due to my medication my red and white cell count was low. Therefore I had low iron and my immune system was poor. To put it into perspective I couldn’t go through the day without a nap and every other week I was getting ill with a virus due to my poor immune system. I came to a point where the side effects from the medication had fully taken over my life and something had to be done. So I spoke to my consultant and we suggested various vitamins to get my body healthier. Honestly I thought how can these little vitamin pills help me that much. But I was willing to give it ago to help my body.
So I started taking a combination of vitamins and incredibly it has mad a massive difference. I have started taking a mixture of vitamins ; Iron and vitamin C, Magnesium and Complex B. Since taking them I haven’t been ill with a virus for months. My energy, dizziness and general health has improved hugely. It is also helping towards my sleep, mood and anxiety.My skin, hair and nails are healthier. And I haven’t had a migraine or nausea since. I wish I started taking them sooner!
For the first time in ten years I feel more like the old me before the medication side effects, of course I am still not 100% and I have hard days but in contrast to how I was it is a vast improvement. It has made me think so much more of what I want to do once I finish university. I feel now I can get a full time job and I am now keen to travel the world whereas before I felt my health would stop that. I have been doing things I never use to be able to do, cycling and horse riding for example!
From writing this I hope people give it a go as I know how nasty side effects can be and the struggle. I just wish I had found out sooner how these vitamins could help my body. I have learnt so much through my journey with epilepsy. And now I realise I am working with my body to fight epilepsy, not against. I am building it to be strong and healthy.
I realised the medication I take it is amazing how it can control the seizures but equally it is harsh on my body so giving it vitamins to help it along balances it out more. My cell count is up to a normal and healthy amount. And my immune system is fit and healthy! So my advice would be figure out how your medication effects your body and match the right vitamins for you and the change you could see could be vast.
Below I have written what my vitamins do to help my body and also there are others you can take so I have placed a link to a website explaining in detail what they do.
Website link - https://medlineplus.gov/ency/article/002399.htm
Iron and vitamin C - Iron helps towards my fatigue as it builds up my formation of red blood cells. This is very important as my medication reduces them. So this helps balances them out so I have a normal healthy amount. It is also helping to transport oxygen around my body therefore I don’t get as dizzy and out of breathe when walking long distances. The vitamin C is helping boost the absorption of the iron and also contributes towards keeping my immune system strong and healthy!
Magnesium - Helps to reduce fatigue, headaches, and migraines. Also reduced anxiety and depression.
Complex B - Helps towards healthy cells and immune system. Reduces tiredness. Boost immune system. Helps to level out your mood.
In this post I will be discussing, my update in what is happening in my life and how it is affecting my health and when your body needs time to rest and zone out. And trying to balance life with this all going on, with tips and advice.
So, as you can tell I haven’t posted in a while, that is due to starting a new university, new flat mates, and living in a completely new environment. For anyone it is scary starting anything new, but for someone with a chronic illness and anxiety it is increased a level or two. Its that fear of will my new friends understand my condition, as I’ve experienced in the past people who are mean and don’t want to continue a friendship as they struggle to understand the condition and how it affects a friendship. So combine all of this mentally and physically it has been exhausting. Thankfully the people my new close university friends have been very understanding and respectful towards me needing rest and managing my health, in which i am very grateful for.
However, due to the intensity of the work load, and everything combined with the past few months my body has gone into all I want to do is sleep, curl up into a ball, and the cherry on the top is currently a combination of a cold and food poisoning from chicken…happens to every student, right!? But when you live with a chronic illness life is about balance I spend every day making sure I take my tablets on time, eat on time to keep my blood sugar levels up, balance my hours and work at university, still making sure i socialises, and get a good night sleep.
When something irrupts this as simple as exhaustion, a cold and food poisoning, it affects me a lot more than an average person, suddenly that control and balance I have gets shaken. For example I couldn't keep my tablets down due to food poisoning yesterday, and it is terrifying that, what is controlling your seizures, and making you function on a day to day is not going into your body. But thankfully after a lot of trying it was okay the end. Also, I’ve hardly wanted to eat for the past 48 hours so i’ve been living off toast, rice and dry cereal, which to anyone else wouldn't really matter but then your brain automatically goes into panic off well my blood sugar levels are going to be so low, its like waiting for a seizure to happen. The only way I can explain to someone who doesn't have a chronic illness is my body is fighting a battle every day, so when something else, even something small is thrown into that it is mentally and physically exhausting.
I am also one of those people who hates letting people down, I get very anxious and worried that the person is going to hate me and not want to talk to me. So letting friends, my boyfriend, family or even my teachers at uni down, I find that a huge challenge. For example this weekend I was meant to go visit my boyfriend but I felt too ill and exhausted from food poisoning to do so, this was hard for me to accept and frustrating. But you then realise it isn't your fault, and if that person truly loves you and understands all they want is for you to be okay. And I am so, so grateful to have people now in my life like this now. I had little friends in my early teens and have lost many to them not understanding my condition, so it makes you appreciate even more those people in your life presently.
However over the years I have learnt I have to accept that it is not me doing this it is my body, and my body needs the rest to get better. And the people who love me, and care for me will understand and I am hugely grateful for the people who surround and support me. So my advice for when you have to cancel last minute or plans going all over the place due to feeling ill, a seizure, a panic attack or feeling low, stop think my body needs this rest, I’m fighting here it deserves this break, its screaming for a break and allow it to do so. Also its important to mentally have a break so you can stay calm and relax, and zone out of that mental battle. And believe me your loved ones just want to be there for you and to help you through it, wether a big or small situation.
Overall, what I am communicating to the epilepsy warriors and to people who know someone with epilepsy. You are fighting a battle every day of your life you deserve to zone out, relax and let your body have the rest that it needs. If this means postponing a lunch with a friend, educational work, an event. You can catch up with that work when you’re better. And you’re going to do a much better job at it when you’re re-charged. You have to try and teach your mind that is is okay to rest and it will be okay in the end. I heard a simple but such a good quote the other day which was 'it will pass'. This fear you're letting people down, or having a bad day, or a bad seizure or anxiety, it will always pass. Hope and strength gets you through it. And it is always so important to step back look at the positives around you and realise how grateful you are for people, and certain things in your life. And never forget how far you have come, and give yourself a hug pat on the back or if a loved one has epilepsy give them a big hug, and make them aware of how amazingly strong they are.
Firstly, I would like to apologies for my inactivity on social media and my blog posts in the last couple of months. In this post it will all communicate the reason for this. I am going to discuss medication change and the anxiety that this can bring on.
I would also like to say before you read this everyones experience with medication is different and how they deal with it. This is just my story of how it affected me as I am aware I have a very sensitive body to different drugs, so it is risky changing or trying new ones. And how important positivity is in a situation like this.
A couple of months ago I found out that Essential Pharma was causing discontinuation of the branded ethosuximide medication. Therefore meaning I would need to change to a genetic version of ethosuximide. As soon as heard this information I was filled with anxiety, worry and dread of the day I had to change. I went straight to my GP to discuss the change. He informed me that changing from a branded to generic medication shouldn't affect my seizures. However my body may suffer differently from the side affects. Also I had read online that changing can sometimes affect your seizures. So filled with this information I was given the positive news that with the controlmeant of the seizures it should be okay but I was still filled with that ‘what if?’ feeling. I would also like add I’d been on this type of ethosuximide drug for nearly six years so for me I realised id become so reliant on it and how scary it would be to go back to having several seizures a day. It was the fear of the unknown.
If you've read my previous posts you would know that I experience anxiety and certain things can increase it hugely, this sent my anxiety through the roof, I couldn't settle my mind was going a thousand miles an hour worrying about what could happen. But i said to myself I've tried different medications before, I've lived for years with uncontrolled seizures and I managed to do it. So if I've done it already, I can do it again.
About a month ago i started my new generic medication. Another fear would be I could react badly to the other ingredients in the medication, causing an allergic reaction. And about six hours after taking the first tablet, I came out in a very odd rash. It started on my face, then my hands, then spread to my stomach and back. It wasn't hives, like an allergic reaction. They where this bumps about 1cm by 1cm which would be itchy when they first came through but then would scab (sorry for the gory details ) and take days to heal. But when I say a rash it was hundreds all over. Therefore back to the doctors to see what this could be, me thinking it was an allergic reaction. Thankfully he said it wasn't an allergic reaction and to this day we are still unsure of what it was. It could be the stress and anxiety that brought on the rash or a side affect to the new drug but the rash lasted a couple of weeks and slowly started to clear up over those weeks.
In the first couple of weeks of taking it, I had this waves of sickness and a banging headache but I knew had to be patient and let my body get use to it. And a lot of tiredness. With patience came results, successful results. Fortunately I haven't notice a negative change in my seizures, they are still controlled. But anyone who is on anti epileptic drugs knows the stress of a new medications , with side affects being a struggle. But over the years I've learnt its hard to start with you body needs to adapt to these new drugs but over time it is hugely worth it. As after a couple of months of stress, worry and anxiety I have come out the other end stronger and one up from epilepsy.
My overall advice is, epilepsy is an unpredictable condition. you don't know what is round the corner, it was going smoothly for me and then this happened but it shows the resilience and how it is so important to keep fighting as with the patience and strength you can get back to living a normal life. Yes it can be tough not only on you but your loved ones around you. I think that is so important to have support to help you get through it. But please if you're struggling with uncontrolled seizures, mental health, medication side affects or anything related its scary and a challenge but you've come this far so whatever is thrown at you, you can take it and keep fighting, fellow warriors.
Summer has arrived, whoop whoop. Chatting to my friends they're going to festivals, party holidays and basically anything that involves late nights and alcohol. But where do I fit into this, having epilepsy can limit you with situations like this. However you can always find a way round it. In this post I am going to give some tips through my good and bad experiences of holidays to chat about how I think it is best to plan when having epilepsy and also in my case anxiety.
My experiences and what I learnt -
I have been on a wide range of holidays both positive and negative experiences, unfortunately due to my health struggles when I am away. In my mind I find going abroad rather daunting as it is so far out of my comfort zone. However I am strong believer in you should not let your hurdles, anxiety or health stop you for new and amazing opportunities. Therefore I think positive and make sure I plan everything. Therefore it makes it as calm and non-risk on my health as possible. Below I have listened the different points I go through to make my trip safer.
Firstly flying isn't my favourite thing, I don't like the thought of being in a area where I cant get out of to get some fresh air incase I feel a bit anxious. So a plane joinery can be challenging for me as you can't just pop outside to get some air! However I have had experiences of smooth, calm plane joineries and lets just say the complete opposite. But I have learnt from that experience, I use to get myself into such a panic and mess but now with a healthy, positive mind it can make such a huge difference. Also I now plan what I am going to do on the plane to distract my mind, so I focus on either a film, writing, drawing or reading a book. Find something that distracts and you enjoy to make the time go quicker.
When I arrive at the place I am staying at I find it is important to feel comfortable and at home. Especially where I am sleeping so I can get a good night sleep. For me this is vital as my main trigger for seizures is sleep deprivation. I have gone on a couple of group holidays before, classic eighteen year old holidays, with late nights drinking and partying and I managed with a balance to experience what others where. I find you have to do what you feel comfortable doing. So if you want a drink and feel safe doing so, do it. But don't feel you have to due to the people around you drinking or going out. If they are your true friends they will understand if you are not drinking or you need an early night. My best friend who I have a been on a few holidays with has been the most amazing, supportive, understanding and patient person possible and if you have someone like that by your side you are so lucky!
Last summer I had a massive flop when away in France and was an anxious mess constantly scared I would have a seizure due to not sleeping well where we stayed. Therefore this shows it is so important to go away with people who understand your condition, and what to do if something does go wrong. And of course if you are with your family they are likely to know what to do. However make sure you are open with them if you have any anxieties or worries.
My view on travelling is I love visiting new places as I adore art and photography so find it amazing visiting new places, such as i visited Paris for a week with another friend. And loved see the different environments and little cobbled side streets. Showing that you can equally have the same experience as others.
Tips and important things to remember when going away -
Medication is on of the most vital parts of going on holiday. Making sure you have enough medication so if you are going for a long period of time it is important to go to your doctor or chemist to bigger dose of your medication.
Time difference and medication -
For me the furthest place I've been is Greece therefore the time zone is two hours, which didn't make a huge difference on taking my medication. Obviously if you where travelling to a place where you have a greater time zone it is important to talk to your doctor about it for more information on the safest way to do so.
I make sure I take medication both in my suitcase and my handbag which I take on the plane, in case my suitcase goes missing or ends up in the wrong place! So that is a huge tip i would give! Also because I'm taking it on the plane with me I have to take it through security. One of my medication is liquid and over the amount you're allowed to take on the plane for other liquids such as water or shampoo. It is important you bring a medical or doctors note to show that your medically need to take the medication on board with you. Also when I was in France going through security they did a swab test or put it in some container which looks like a microwave with my medication to check that it is what I'm saying it is. The first time this happened I was alarmed but now its just the norm.
On both my medications it says do not store above 30 degrees. Therefore I make sure I consider when travelling and landing in a hot country it doesn't getting too hot. Also when storing it in a hotel room or your accommodation make sure that 24/7 it is at room temperature and not getting too hot.
Travelling is tiring for anyone and if you're epileptic and like me it is extremely tiring. Therefore I make sure I get a good night sleep before, don't do much the day before travailing so I'm not too tired from the previous day. Personally I always feel safer booking a flight at a ‘normal’ time for example not booking a plane at 6:00 in the morning as I know i'll have to get up in the middle of the night to get it therefore it would make my sleeping pattern messed up and cause extreme fatigue putting me at a higher risk of having a seizure.
When I am on the plane I like to make sure I relax, am comfortable and try to nap as I find this is the best way to make the time go by and get a bit of energy back. When I land I make sure that I have a calm relax first evening and go to bed early. Also i am normal still tired the next day so i have a relaxing pool day or just child the day after arriving to boost my energy levels.
Before I go away to any location I always make sure a hospital is near by with the contact details just incase I need it. Also look into near doctors also.
Medical bracelet -
Epilepsy medical bracelet are a important, helpful and poetically life saving object. Especially if you're travelling alone or are separate from your friends and family. As this allows strangers to understand what is happening to you and what to do if you have a seizure.
Friends and family -
Make sure the people you are going away with have an understanding of what to do if you do have a seizure. And any worries or anxieties you have about going away.
Lastly i am going to talk about anxiety as I have said at the start of this post my holidays have been very up and down…But i have learnt to use meditation, breathing and calming methods to over come this when both traveling and away as it is so greatly out my comfort zone. The advice I would give is re-search into those methods. Go away with someone you feel comfortable and safe with. And most importantly look after your body and have fun!
Hi welcome, to my blog! Come follow my journey and read my experiences of living with epilepsy.