World Mental Health Day 2016

World Mental Health Day 2016

Mental health can affect anyone at any time in their life. The time it affected me and is still affecting me is because of a little thing called epilepsy! There are many factors of epilepsy that can cause mental health issues and I’d like to discuss my personal journey with you as a little world mental health day special!

I take a medication called levetiracetam! It’s known for having side effects including anorexia, suicidal thoughts and depression amongst a whole host of things ! Why do I take it ? Because some day I would like a family and it’s meant the safest medication for women with epilepsy who want to conceive. It also controls a lot of my seizures! I don’t have many at all now and It’s great! 

Just being diagnosed with epilepsy and having seizures has an effect on mental health. It’s all so new and draining! Test after test, some quite invasive, being in hospital and the effect that seizures have on your brain generally. This is where I feel a lot of my anxiety stems from. I get very frightened of things happening to me and get very anxious about people watching me and what they are thinking about me. Sometimes friends can be scared about your epilepsy because they don’t know what to do but in my case I get anxious that they are when there not ! Hope that makes a tiny bit of sense ? That part comes from losing friends through having seizures, sometimes people can’t handle it and decide to shut you out. It’s hard but I’ve found manageable to a certain extent. Yeah the jealousy is there when I see them with new friends but that’s okay they clearly didn’t care about me in the first place. 

My anxiety has got better but stems up a lot when I go through a medication change or increase. Learning to control it and not let it control me is so important as I don’t want it to stop me from doing anything that I want to do ! But I’m so lucky to have people on my support group who know what it’s like and are there to support me as well as my family too! 

When I first went to my GP and mentioned about my anxiety, taking medication is an option but I don’t like to risk anything messing with my levetiracetam as I do not want to have a seizure. I got a leaflet called ‘time to talk’ which told me about options for counselling. I have also been using an app called ‘headspace’ which focuses on mindfulness, I use the therapeutic adult colouring books and also have recently started to drink more water and get lots of fresh air so I’m not sat in bed just a simple ten minute walk even can help you out, I’m taking better care of my body and I’m reaping the benefits! 
There are some great websites to read more into mental health about including…

http://www.mind.org.uk


Check out the campaign for #WMHD here…
https://www.mentalhealth.org.uk/campaigns/world-mental-health-day 

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Friendship 

Friendship 

So today I learnt two pretty big lessons …

 One – 

Your true best friends will be there for you no matter what. 

I’m lucky enough to still have the friends I had from school and even though different lives send us in different directions we always end up back together again laughing like old times still trying to convince ‘street sellers’ we’re not 18 so they don’t bother us! Even with a new diagnosis they aren’t up to scratch on just a conversation and the show of a leaflet I carry and it’s like ‘okay that’s fine I can do that if need be’ 

My friends who I’ve spent time abroad with who love me no matter what,even if I do go crazy sometimes and cry over cookie crisp! There for me at stupid times to talk. Don’t freak out at the prospect of me having a seizure and if I do they are the ones who have already asked the question ‘what do I do if’ and some who have dealt with it so many times they just know the drill. I know they are always there. As I am for them. 

Two-

When your diagnosed with a condition like epilepsy, you will find out who your real friends are, the ones who text and make sure your okay, the ones who make time to see you, who even send you cards and well wishes to let you know they are thinking of you. But then there are others, who shut you out. It could be fear, ignorance or just not being bothered with the hassle of having a friend with a health condition like epilepsy. But know this, friends who do not bother to make sure your okay are not friends at all, maybe once you hung out all the time but maybe you were just company ? Because if you were friends they would still be there. It’s a hard lesson to learn but it’s a worthwhile one, don’t chase someone who doesn’t care. They are not worth your precious time or effort. 

To all my amazing friends.. Thankyou. 

Imagine this. 

Imagine this. 

So your living your life to the full travelling you have the best friends, a great job and everything was going the right way. Yeah maybe these seizures you have could stop but you’ll live with them for now, they’ll go away. Right ? 

‘Were sending you home’. You lose your job. 

‘You have epilepsy’. Facing the reality of diagnosis. 

‘Please leave your message after the tone’. You lose friends, or people you thought were your friends.

‘Overdrawn charges will be applied to your account’. Financial independence. Gone. One of the most frustrating things. 

‘I’m sorry but these claims take time’. What am I meant to do? Live on thin air? ‘There’s nothing you can do but wait, we will call you back at some time’ 

‘We should go out when your better’. That’s never then. I’ve heard that one more times than I can count. 

When people hear epilepsy, they think of a tonic clonic seizure. They might think of a persons name they know who has epilepsy. What they don’t think ?

– they don’t think of the discrimination we face. 

– they don’t think of the everyday things they take for granted that we can’t do.

– they don’t think of the side effects of medication we take.

– they don’t think of the worry our families endure every single day.

– they don’t think of the tears we cry every night wishing life could be different.

They don’t think about the reality of epilepsy. All the small details. 

It’s not just about seizures. 

I’m one of the lucky ones. I have a few friends who support me and have done for the past two years. I have family who support me in more way than one. I have a great neurologist and epilepsy nurse. And still every day I am sad. Selfish really, I see what others with epilepsy have to face and I’m the one crying. And that’s okay because you know what. 

At the moment. 

I’m finding it really fucking hard. 

Daily Blog #1

Daily Blog #1

So I wanted to tell you a little bit about my day and how I’ve been doing recently ! What better to do that than in a daily blog ! I’m going to try and do these once in a while because I always find them interesting to read ! 

So I had a slow start ! I could not get to sleep for shit last night literally up and down, in my mums room running round the house thinking we were being robbed, hearing noises ! Was cray ! Anyway I finally got to sleep at one point and woke up this morning a bit dazed and tired ! (Yawwwwwwwn)

Anyway so me, my sister and mum went out, as we were in the car I started the feel really sick! My appetite has been really off and for those who know me personally will be like oh my somethings really wrong here haha ! Your right I hardly eat my meals anymore either through forgetfulness Or just because the thought of it makes me sick ! But then when I don’t eat I feel even sicker ! Nightmare ! Anyway so we got to the cutest garden centre and decided to go to The cafe ! I got some water and some food which made me feel a lot better ! 

how pretty is this water !

After that we went and had a look around the place ! There were the cutest gifts and the most amazing tropical fish centre so I decided to take to snapchat and record the finding nemo film hahaha ! Would be rude not to right ? Tell you what though in the pond fish section there were some right massive fuckers !! 

check out this bad boy


There were so many cute little gifts I wish I could have got them all !! 

Although we were looking around the plant section and found this.. I mean like wtf … 

I made a friend
literally these are the definition of village girl goals ! if you know you know

So anyway we got home and I went for a lay down as I was still feeling a bit sick !! Ewww and then when I settled I a bit I joined the fam for some roast dinner it was sooooo good ! And now I’m sitting here waiting for it to come back up TMI ! Soz ! 

Hope you have had a lovely day ! 

Tori X 

Would you know what to do ?

Would you know what to do ?

So today has been so busy and exciting ! I’ve been working on a project to help raise awareness of seizure first aid ! 

Personally I think that people would be less afraid of helping someone out having a seizure if they actually new what to do! So I have started my own little campaign so people can get themselves clued up on how to deal with a situation in which they discovered someone having a seizure!


I recruited my niece, mum and my sister to be my models and we started getting to work on some pictures and then decided to start filming some footage for videos! it was hilarious I should have made a blooper video !


A really good part of this though now my niece knows how to do the recovery position and what to do in case of a seizure! hopefully she will never have to use it but its always handy to have right !

The videos have taken to YouTube and I’m so excited to show them to you !! I’ll post the links down below for you to check out ! 

I’ll be doing a series of blog posts covering this subject ! As well as a video I’m currently planning to fully go through what to do if you discover someone having a seizure! 

Let me know what you think !! 💜

Link to the videos on YouTube : 

💜Twitter – @tori96s 

💜Instagram- @epileptic20something 

💜YouTube – epileptic20something 
 

 

Self Help 

Self Help 

So through my blog and support group I’ve made quite a few friends and talk to various people about there experiences! 

We all know limits and when we should and shouldn’t be doing things and I think it’s really important to talk about self help when dealing with epilepsy as a lot of our lifestyle choices can affect our seizure activity. 

For example – someone drinking alcohol who has numerous seizures every single day, well of course it’s not going to make you feel good and increase you seizures  ..? Why would you do it to yourself ? 

Know your limits – seizure free for a week and you have family and friends over for dinner, yeah maybe in that situation treat yourself to a glass of wine ! But if you don’t think you can hack it don’t ! Is that wine or beer really worth a seizure ? No ! It’s not ! Is it going to benefit your health ? No ! So try self control and go for an alternative ! For a healthier you ! They don’t just write warnings on medications for the fun of it ! It’s there for a reason ! 


Diet and exercise – reading more into my condition I’ve seen how important diet and exercise have a roll to play in epilepsy, cut out the crap that messes with your brain, yeah have a treat but your health is more important. I’ve found green tea is a great way to keep on top of this ! Detoxifying the body ! Making sure your topped up with fluids to keep that brain ticking over beautifully!

 

A lot of people come into contact with the black dog (depression) whilst having epilepsy ! Yeah we have those shit days where we want to just lay in bed feeling sorry for ourselves ‘ohh poor me’ all that but that’s your sign to get up and do something ! Stop those horrid thoughts and focus on some positive energy !! Sometimes easier said than done but have your cry and power through !! 💪🏼 


Take your meds – Keep on top of your medication ensuring your not missing doses ! Use a tracker or a pill organiser to make sure you take the right amount at the right time ! Missing just one dose can cause a seizure so be extra vigilant where that’s concerned !! 

Communication – communication is key ! Write down your feelings, what you ate.. Keep a seizure diary ! This is all so helpful to your neuro and epilepsy nurse it will help them determine more about your condition and deliver more answers !! Feeling down ? Find a way to tell someone so you can get help before it gets any worse and you find yourself in a darker place ! 

BE SAFE !!! – wear a monitor or some kind of detection device to ensure someone always knows when your having a seizure ! This can prevent injury, status epilepticus and save your life !! Take precautions when doing things ! Be prepared for any situation ! 

i have a tag on my handbag ,carry am epilepsy toolkit and ID aswell as wearing an ID bracelet and epilepsy smart watch from epilepsy solutions !

Be pro active and be bothered – think you have a bug ? Get advice from your doctor about illness and if it will affect your epilepsy ? Be bothered to care about yourself because your so worth it !! Your worth caring about and keeping healthy ! You only get one body so treat it well even if parts of it don’t treat you well #brain ! 


 Positivity is the key to success ! Love laugh and look after your body ! 💜 

Over and out 💜

Medication Madness 

Medication Madness 

Okay so I won’t be the first person with epilepsy to say medication drives me bonkers ! I’m often chatting to my friends with epilepsy about how they’ve throw dinner across the room, cried over there duvet not being on right but it all comes with medication and the side effects ! 

When I first started medication for my epilepsy this is something that I didn’t really consider I mean they said there would be side effects but seriously.. How bad can it be ? 

How wrong was I ….. 

So below are the common side effects of the medication I take … 

“Common side effects of Keppra include: infection, psychoneurosis, drowsiness, weakness, nasopharyngitis, nervousness, headache, apathy, hyperkinesia, abnormal behavior, hostility, anxiety, depersonalization, depression, agitation, aggressive behavior, fatigue, personality disorder, laceration, irritability, mood changes, and emotional lability. Other side effects include: tonic clonic seizure, dizziness, vertigo, depressed mood, decreased neutrophils, neck pain, and pain. See below for a comprehensive list of adverse effects.” – https://www.drugs.com/sfx/keppra-side-effects.html

Yes you read right they can cause seizures… Why would an AED cause seizures …? It’s all a bit weird !

At first with the medication I experienced extreme tiredness, I literally couldn’t go 4 hours without taking a nap ! Literally ! And one of my triggers .. Tiredness ! Seizure seizure seizure ! 

After a couple of weeks that wore off and I’ve started to feel a lot better on it ! Before it I would seize a lot more frequently so it’s controlled them to an extent which is really good it was just a case of getting used to the medication ! So if your sitting there thinking ‘no I’m not doing it anymore I’m not taking it’ like I was a few weeks ago … Stop ! Take a deep breath because with time it’s going to get better !  

You may do weird things, be angry, sad, hyper but it will change given time ! Don’t get me wrong I’m no doctor but keep your GP or epilepsy nurse in the loop, write down how you feel and get someone else to observe you and write aswell ! It all helps ! 

While your getting used to it

Take up a new hobby ! I put my hand to doing small crafts and creating things for people ! But you could literally try anything craft, baking is another favourite of mine ! 

Blog/vlog – creating my blog is by far the best thing I’ve done ! Especially if you go back to the first few posts you will see how much I get out of my system haha ! #sorrynotsorry

Speak to people. Be it your local support meeting, Facebook groups .. Anyone 🙂 

Here is a link to my support group I created and run with a group of fantastic bloggers ! Come a join in ! It might be the best thing you ever did ….. 


https://www.facebook.com/groups/324889234525834/


Join in the conversation with the hashtag 

#epilepsyspeaks 

Sam Meideros- http://thestorminsidemyhead.com/ , Twitter @epilepsystorm 

Daisy Robson- http://www.daisysepilepsy.wordpress.com/ , Twitter @princess9m62

Louise Glover – YouTube.com/louiseglover3 , Twitter @louiseglover3 , http://www.uponasunshine.co.uk 

Clair Cobbold- http://www.becomingamumwithepilepsy.blogspot.co.uk/ , Twitter @mumwithepilepsy 

Faye Waddams- http://fairyfaye1986.weebly.com , Twitter @fairyfaye1986