A while back, I mentioned the benefits of a seizure diary to help monitor seizure activity and potential triggers in our day-to-day life.
But I also have a second book…
For me, sleep is really important, if I lose too much I know there will be trouble. I can’t afford to go to bed feeling tense with my head swimming with the stresses of the day and sometimes there are issues you can’t always talk about with others.
So a few years ago I began to offload my bad days to a notepad before I went to sleep.
It worked wonders, and as the period of bad stress reduced in my life, I used it less and less.
Yes, there are times I have had to pick it up again, but that’s life, everyone has stress from time to time.
I never realised how I depended on it, until recently, when I was thrown into a horrific week and I discovered myself searching for it before I went to sleep.
It’s my lifeline for when things are tough, and my saviour for a better night’s sleep, you scribble it all down and you feel as though a weight has been lifted.
I would recommend it to anyone – especially someone with epilepsy who needs their sleep like me!
(Tip – keep the book in a secret place, so you can pour your heart out. I’ve done such a good job of hiding mine I’ve yet to find it! )
I recently realised that I’m now over five years seizure free.
Having controlled epilepsy brings conflicting emotions. The majority of the time it’s great, yet life is never perfect, because life never is. 😄
I used to look at the glistening goal of being seizure free, to me, it was the solution to a my problems but I was wrong.
My epilepsy hadn’t magically disappeared. It’s part of me, even if it’s dormant, I’ve accepted that now.
People still had problems – friends, colleagues, potential partners etc. Would learn that I had epilepsy and regardless of whether it was controlled or not it was an issue for them. I wasn’t expecting that. Always remember – If anyone has an issue with, walk away they are not worth your time.
I felt I had more to lose – I now had a record ‘x’ amount of time seizure free and I would be doubly disappointed when it would come crashing down. I then had a car, what if I lost that? But finally I realised whatever happens will happen, you have to live in the moment and enjoy the good days.
And I believe that’s crucial, appreciating those good days and although hard, worrying and less letting go of the small stresses in life.
I’m so utterly grateful for how my health has been recently. This year has been great, here’s to the next!
I know that my last blog was: Tips for Staying Safe in Heatwaves and I follow the tips strictly, but when I wrote the blog I wasn’t expecting the heat wave to last so long, and with each passing day of this warmth, I find myself building with tension and anxiety fearing that I may become unwell if the temperature doesn’t soon begin to cool.
I don’t want to complain about the nice weather, it brings us together and people of all ages are appearing to have a wonderful time in sun.
Have you ever noticed how the heat in the UK always seems different to abroad? I have been to places like the Mediterranean and Australia and as I have exited the plane the warmth embraces you. At home it seems so much more stifling, and as a country we don’t seem to be equipped for the heat either – or any extreme weathers we are used to receiving such a mixed bag. I think this may be part of the reason why I find heatwaves here so difficult.
I have been seizure free for over five years and naturally I’d like it to remain that way. My triggers are normally from sleep deprivation and stress and the fact that I haven’t slept properly since the heat wave began is starting to make me just a little bit anxious.
I know that I am not the only person who is currently feeling this way and I know what I have to do. I have to take it easy, keep doing the good things; i.e. drink plenty, get rest whenever I can, keep as cool as possible, and hardest but most important thing, is to try to take my mind off things remind myself that everything will be fine and that this is Britain, the heat wave will be gone soon – hopefully.
My heart also goes out to everyone who has been unwell with epilepsy during this weather, I have been there, I know how horrible it is, and I think you’re doing great.
If anyone else is feeling anxious you’re welcome to send me a message,
Thanks for reading,
I can’t be the only one that has a love hate relationship when it comes to summer and hot weather. You want to be outside enjoying yourself, but you overheat too quickly. You spend most of the day walking around like a zombie after been awake all night, and your are either coping with auras and seizures or worried that due to the heat something is bound to appear soon. Then you worry about worrying – that awful cycle.
I used to always dread summer, as it would be a time where my health would decline. Thankfully, the last few summers have been good and here are 5 tips that I follow.
I hope these help, even now I am learning more things to help me stay protected from the heat.
1. Stay hydrated
This is really important. The moment you feel thirsty grab a cold drink. Avoid caffeine like; teas, coffees and energy drinks as they will dehydrate you.
I highly recommend buying a drinking bottle, you can keep it in cool in the fridge and take it with you if you’re go out.
2. Apply plenty of sun cream – don’t burn!
You may think this sounds obvious, but it’s surprising how many people don’t bother. I will also share this tip I recently learnt. When buying sun cream check the UVA & UVB star rating as well as the SPF. As we know, UVA & UVB protection blocks the harmful rays from the sun, so if your sun creams UVA & UVB rating is low it’s not protecting you from the harmful rays.
If you’re worried that good sun cream will be expensive, it won’t. I bought a SPF50 sun cream with a UVA star rating of 5 (the highest) for £1.50.
(It’s also useful to renew sun creams every year, to make sure they are working their best.)
3. Head for shade
When out and about be mindful of how long you are staying in the sun, especially during the middle of the day. Don’t push yourself if you start to feeling hot or tired and take a break and relax in the shade.
4. Invest in a fan
It’s never a good thing when your sleep gets interrupted because of hot, humid nights. It’s important that we get our rest! Fans can be an excellent solution to this problem. Tower fans are usually good, and they are not too expensive
5. And finally…Relax!
One of the worse things that you can do in hot weather is exhaust yourself. Its only natural that you are going to have busy schedules, and that combined with hot weather can be a dangerous mix, especially if sleep has been disturbed during the night. The most important thing you can do is recognise when you are feeling a little depleted and take a break, head for shade and have a drink.
Hello, happy father’s day everyone! Today I have decided to talk about my dad.
There is no mistake that everyone in my family was effected when I was first diagnosed with epilepsy, but for my Dad I think it was a little different. I saw a type of fear in his eyes, I was his only daughter and up until that point he had been able to protect me from everything I had feared, and now I was facing something massive that neither of us could control.
I know my parents didn’t have a clue what was happening when I had my first seizure at 14. As I have mentioned in a previous post, my dad noticed that my lips went blue straight after I fell unconscious, believing that I was choking he put his finger in my mouth a bid to clear my airways. This is when the seizure began. Obviously I bit his finger and he needed stitches. I was horrified when I discovered what happened – probably more than I was about the seizure. (note: don’t put fingers etc. in people’s mouths when they are have a seizure, you’ll be sorry)
Over the years my dad has been a huge support to me from being; my taxi, my counsellor, my mentor, my mechanic, my handyman, my friend, my father. There is no one quite like him. He will do the utmost to support his family. He has always put my health and wellbeing as a high priory, something which can hard to recognise as a teenager, but today with controlled epilepsy I cannot help but look to
my Dad and thank him for everything, as I know I wouldn’t be where I am today without his love and support.
As I have mentioned in previous posts, a few years ago I was feeling a little isolated with regards to my epilepsy.
In a bid to see how achievable a full and exciting life can be, I decided to Google celebrities who had been dealt the same hand as myself. I was a little reluctant to do so, afraid of what I may find. Many people with epilepsy have a certain stigma attached to them, in that they may not be as intelligent as others – which we all know is a myth, or worse, that epilepsy has connections with madness, an even older myth.
I have overheard conversations of people discussing how they believe epilepsy is connected with insanity. It really hurts to listen to it, knowing that they couldn’t be more wrong. This was one of the reasons that I was a little afraid to research this topic. I was expecting a tiny list, where celebrities of the past were too afraid to be open about their diagnosis.
You can only imagine my amazement when I discovered the full list of famous people with epilepsy throughout history. It’s a list that includes names of leaders, inventors, writers, artists and musicians. Many of whom I had admired all my life.
I have compiled a list of their names and here it is, dating from 500BC to the present day:
Pythagoras (570BC – 495BC)
Socrates (470BC – 399BC)
Aristotle (384BC – 322BC)
Alexander the Great (356BC – 323BC)
Julius Caesar (100BC – 44BC)
Alfred the Great (849 – 899)
Michelangelo (1475 – 1519)
Leonardo Da Vinci (1452 – 1519)
Martin Luther (1483-1546)
Charles V of Spain (1500 – 1558)
Louis XIII of France (1601 – 1643)
Sir Isaac Newton (1643-1727)
George Frederick Handel (1685 – 1759)
Peter the Great (1672 – 1725)
James Madison (1751 – 1836) 4th U.S. President in 1816 potentially he had epilepsy suffering from attacks which were similar, Madison wrote that he had “a constitutional tendency to sudden attacks somewhat resembling epilepsy which suspended all intellectual function…. They continued throughout my life with prolonged intensity”
Paul I Russia (1754 – 1801)
Sir Walter Scott (1771 – 1832)
Nicolo Paganini (1782 – 1840)
Lord Byron (1788 – 1824)
Hector Berlioz (1803 – 1869)
Edgar Allan Poe (1809 – 1849)
Robert Schuman (1810 – 1856)
Charles Dickens (1812 – 1870)
Fyoder Mikhaylovich Dostoyevsky (1821 – 1881)
Lewis Carroll (1832 – 1898)
Alfred Nobel (1833 – 1896)
Peter Tchaikovsky (1840 – 1893)
Vincent Van Gogh (1853-1890)
Theodore Roosevelt (1858 – 1919)
Agatha Christie (1890 – 1976)
Bud Abbott (1895 – 1974)
George Gershwin (1898 – 1937)
Truman Capote (1924 – 1984)
Richard Burton (1925 – 1984)
Neil Young (1945-)
Danny Glover (1947-) Actor
Margaux Hemmingway (1955-1996)
Hugo Weaving (1960-)
Susan Boyle (1961-)
Lil Wayne (1982-)
Dai Greene (1986-)
Next time when you hear someone say something a little in insensitive or you have a day where you feel that nothing is possible, just remember this list of people who achieved amazing things despite their medical issues and ignored what others must have said to them.
Some used their experiences to their advantages and incorporated it into their writing giving us famous and now beloved works.
I do not doubt that throughout history having epilepsy must have been hugely concerning especially without the medical knowledge and medication that we have today.
This only in-grains my belief that if they could tackle life and still achieve their dreams, so can we.