Epilepsy Sparks

Epilepsy Sparks Follow

International organisation educating regarding #epilepsy and making people smile. Valuing science. 💜 Guest blog with us: www.epilepsysparks.com/blog

http://www.epilepsysparks.com/

513 Followers  84 Follow

Share Share Share

Now ain’t that the truth!! 😑🧠🤦🏼‍♀️
~
It’s wonderful to have controlled seizures as a result of AEDs (although, yes, one would rather have no seizures and no AEDs either!) and it’s something that we all desire. It’s terrific and those who no longer have seizures are very grateful for this. 🤗💜🤗💜🤗💜🤗💜 But...
~
The AEDs that most still have to take have side-effects. Especially if one is on them, like, forrreverrrrr! 🤦🏽‍♀️ such as:
- Drowsiness;
- A lack of energy;
- Agitation;
- Headaches;
- Uncontrollable shaking (tremor);
- Hair loss*
- Unwanted hair growth*
- Swollen gums
- Rashes *Seriously. EXTRA hair. Or LOSS of hair. 😑

Then:
- Anxiety;
- Depression;
- Moodiness.... Aarghghghghgh!!
~
And yes, people still having seizures (who may have refractory/ pharmaco-resistant epilepsy) experience the above too, we are just explaining that those with controlled seizures aren’t free from the dodgy-brain effects entirely...) 🧠🧠
~
Then there’s the:
- “What if I do have a seizure again?🤭
- “When will I have a seizure again?”🤭
- “I’m scared to drive again because what if I have a seizure if I when driving and kill someone?”🤭
- “What if I do change my life, move to the country, get a new job, start a family; and then start having seizures again?” 🤭
- “I’m so lucky to not have seizures...but I feel guilty because so many others still do have them!”🤭 ~
Another common thought (although rarely spoken of due to embarrassment/shame) is:
- “I hate my epilepsy but I’m used to life with seizures. What do I do now?” 😳
....then;
- “Everyone is going to expect me to get an amazing job, live life as ‘normal’ (whatever that is), be happy, flourish and just ‘fit-in’”. 😢 ~
Sometimes, there are even vile people with epilepsy who make people have thoughts like: - “The epilepsy group thinks I’m fine now because I’m not having seizures. I feel abandoned and alone. I don’t fit in anywhere 😭.”, and;
- “A person I spoke to is angry and jealous of me because my seizures have stopped. I get it and I wish the best for him/her but why should they be mean to me? Is everyone in the group going to be like this now?” ⭐️Post continued in comments!!🌟
We have our first guest-blog from the African continent: from Fred Kiserem in Kenya!! 👌🏿
Check it out (check our “PS” & “PPS” down below before you do):! https://www.epilepsysparks.com/Epilepsy-In-Kenya-Forming-a-Foundation
~
Fred has epilepsy, came to terms with it whilst in Iraq (!) and formed the Kiserem Epilepsy Awareness Foundation back in Kenya! 🌍
~
You’ll see from the piece that Fred really has his work cut out... Many people in Kenya don’t just still believe in witches and ghosts 👿👻, but also believe them to be responsible for seizures. ~
Fred has really inspired us this week! We support Fred in his amazing work! 🙌
~
PS Fred’s blog contains information about some very upsetting crimes being committed against those with epilepsy in Kenya. Please don’t read the blog if you think it might make you feel worse. 🤗

PPS On a very positive note (!), Fred is slowly helping to turn things around by identifying these awful behaviours taking place. 💜
.
.
.
.
.
.
#kenya #kenyan #epilepsy #epilepsysucks
Thank you you all! We are a professional organisation who educates, is honest, discourages falsities & encourages laughing with others. ~
You are amazing! 💜🧠🤗
.
.
.
.

#epilepsy #epilepsysparks #epilepsyeducation #epilepsydoesmyheadin
Ok, so depending upon your country, the statistics do vary, but about 1% of the human population have epilepsy. Meaning between 50-70million people!!! 😲⠀
~⠀
If you think of it like that...those that THINK that they don’t know/have never met anyone with epilepsy are very likely to be wrong. 😑🤦🏿‍♀️⠀
~⠀
We’ve met people who’d found out that a member of their family had epilepsy....decades after their diagnosis. ⠀
~⠀
We met a woman who found out that her best friend’s mum had epilepsy (as did she)...but the mum had kept it a secret for 30 years!! 😞⠀
~⠀
Education is key. Let’s TALK about epilepsy. If you don’t yet feel comfortable doing so, learn as much as you can to build up your confidence. 💜⠀
~⠀
You are amazing. 💜🤗💜🤗⠀
⠀
#epilepsy #mentalhealth #confidencebuilding
What do you think of the new hashtag?! Feel free to repost this (tag us) with the new hashtag!!⠀
~⠀
In the UK, “does my head in” means to “irritate or annoy” (see, we are being polite again!). See the URL link at the bottom! ⠀
~⠀
What do you think of the double entendre? 🤔
~⠀
Big hugs everyone! 🤗💜😁💜🤗⠀
.⠀
https://www.google.co.uk/amp/s/www.urbandictionary.com/define.php%3fterm=does%2bmy%2bhead%2bin&amp=true⠀
⠀
.⠀
.⠀
.⠀
.⠀
.⠀
.⠀
#epilepsydoesmyheadin #epilepsy #epilepsysucks
It’s a bit cheesy. We know.... 🤦🏼‍♀️ But it’s true!!⠀
~⠀
Some of the most empathetic people we’ve met have been those affected by epilepsy (or indeed another neurological health condition). 🤗⠀
~⠀
It’s because we are more likely to have been through the social, personal, physical, neurological and psychiatric mill. Maybe we still are being churned. Maybe we will be again in the future. We don’t know.⠀
~⠀
Having experience of what epilepsy can “bring” or remove from your life (or how about “detonate”?! That’s a good word for it, right?! Epilepsy can feel like a bomb going off sometimes....) is actually an education like nothing else. It’s like when you find out why a nurse becomes a nurse, or a counsellor becomes a counsellor: they’ve very often had similar experience to those of their patients. 💜💜⠀
~⠀
Accept your positive trait as an empathetic person. Maybe write yourself a note to remind yourself something positive like this, or put it as your screen saver (in case you forget 😂)?! ⠀
~⠀
You are incredible. You are amazing. 💜🤗💜🤗⠀
.⠀
.⠀
.⠀
.⠀
.⠀
#epilepsy #mentalhealth #disability
Epilepsy training for employers is key!
~
It you know an employer that needs this training (in the UK), then contact @epilepsyaction !! 💜 ~
Today, @torierobinson10 spoke to & trained (on behalf of Epilepsy Action) a team at Raymond James Investment Services in London. They are a professional firm who realise the importance of:
- Learning about epilepsy;
- What to do should an employee/client have a seizure;
- How epilepsy affects a person’s life overall;
- What they can do to accommodate a person with epilepsy
- That it’s possible to laugh and smile even when you’ve had part of your brain removed! 
#epilepsy #hr #seizures #discrimination #epilepsypositivity
Hey All. Right now: VIRTUAL HUGS!! 🤗🤗🤗🤗
~
Heaps of us have had/do have some mental health issues, for various reasons. 🧠🧠🧠
~
Thank you to all of you and others in the world who are now being more understanding and helping to reduce discrimination against those of us affected by mental health issues. 👏👏👏
~
Our Founder @torierobinson10 will be working with the Ortus (part of the famous South London & Maudsley Trust) next year to provide training regarding epilepsy & mental health; the two are so closely linked.
~
Those with epilepsy have a 20% higher rate of suicide, in addition to other conditions caused by a mixture of: society (discrimination), seizures, isolation, the effects of drugs, and more.
~
Seriously you fabulous people: call the Samaritans if you need to talk. There isn’t anything that you can’t talk to them about. You won’t be judged. You don’t have to have any other illness. You can be 10 or 80. You can be a banker or a rubbish-collector.
~
Tels:
116 123 (UK & ROI)
135 247 (Australia)
Or just google for your local number.
~
To everyone out there: as alone as you may feel and as embarrassed as you may feel, mental health is an illness - sometimes like a prolonged chopping off of the leg. You aren’t alone. You are amazing. 💜💜💜 #epilepsy #mentalhealth #mentalhealthawarenessday #neurology
Hey, whoever you are, of whichever sex, sexuality, etc., we all have emotional times/days/weeks! 🧠 Acknowledge!! ⠀
~⠀
What heaps of people don’t appreciate is how impactful our emotions are on our physical and neurological health. ⠀
~⠀
If we feel awful/emotionally unstable then our posture, eating habits, activities and general lifestyle can change for the worse too. These can then sometimes increase  our likelihood to have seizures...then we feel awful...then we get a bit stuck in the loop of “awfulness” (you know we are trying not to swear right?! 😁).⠀
~⠀
Our point is, that being “at one” (sorry, we’re sounding “deep” here) with yourself, listening to your emotions and your mental state is equally (if sometimes even more) important than being aware of your physical state. Your mental health is...KING/QUEEN. 🧠🤗🧠🤗⠀
~⠀
Now we aren’t going all: “be at peace with the world maaaaaaan” on you 😂, but, we are saying that for those of us with epilepsy, it’s crucial to be aware of our feelings and realise that if we aren’t feeling “good” then the threat to our neurological health is significant; i.e.: we might go and have a seizure. Or a cluster. Then who knows... ⠀
~⠀
Remember, you aren’t as alone as you may feel (millions of us around the world have epilepsy and BILLIONS have/will have a mental health condition at some point). ⠀
~⠀
You are amazing. Hugs. 🤗💜🤗💜⠀
⠀
⠀
⠀
#epilepsy #mentalhealthawareness
Fancy reading something inspiring? Lucy Francis is so supportive of her husband (who has epilepsy) - she now even does epilepsy training for companies! 👏🤗💜👏🤗💜
~
This blog is truly heartwarming!! #epilepsy 
#epilepsysparks #disability
It can be hard, we know...when so many people don’t “get” what affects us so deeply and so negatively. But... ⠀
~⠀
When you accept that it’s not them being horrible people (most of that time) but instead they just haven’t consciously needed to learn about epilepsy, then their ignorance stops being such a big deal. Instead, it’s opportunity for us...💜⠀
~⠀
It’s like meeting someone who just doesn’t understand how people can get so depressed - because they haven’t experienced it before (lucky people!). 😞⠀
~⠀
As long as these people are open to education and are listeners, then them not knowing anything prior is an opportunity for us! 👊⠀
~⠀
We can be that person who makes someone not fearful of epilepsy and instead, interested. We can enable them to understand epilepsy (at least to a degree), which benefits them, us and the rest of society. 👏⠀
~⠀
If we meet people who don’t understand epilepsy (and are honestly ar££holes about it), we seriously giggle. And should they not be open to using their own brains, we walk away from them. 🏃‍♀️🏃🏿‍♂️ (sometimes easier said than done though, we know...)⠀
~⠀
Let’s educate ourselves, surround ourselves with good people, talk with confidence and educate the world regarding one of the  most common neurological disorders in the world! 🧠🌍⠀
~⠀
You are not alone. You are amazing. 💜🤗💜🤗⠀
⠀
⠀
#epilepsy #discrimination #education #neurology
Lightening is beautiful. But, like the “lightening” in our brains, it can also go over the top... ⚡️🧠⚡️⠀
~⠀
“Extra-curricular” brain activity is not welcome; from aura through to tonic-clonics. Well, apart from those who do enjoy their auras (yes, some of us do)! ⠀
~⠀
If only epileptic seizures looked as pretty as lightening... ⚡️⠀
~⠀
If only they didn’t feel as impactful as lightening!! ⚡️⚡️⚡️⠀
~⠀
Meh. ⠀
⠀
⠀
⠀
⠀
#epilepsy #epilepsysparks #neurology #lightening⠀