Lots been happening wiv Rach

I realised how long its been since I’d written my last blog, a v. long time & so much has been going on in my life. My epilepsy is still not controlled. I will try & cram it all in this blog but my health has been quite up & down.

My memory has taken a turn for the worst, seizures still no different, having them every day & just so tired from them. Now I seem to be doing things during my seizures that scare me.

Due to me having absence seizures, on Christmas Day morning around 7am I actually walked out the house without knowing I was doing so with an empty cereal bowl, as I thought I ate my cereals but obviously I’d thrown them in the bin without knowing. I then walked down the street & knocked on my neighbours door asking for Dean. I can’t remember this at all & feel anything can happen any time any day!

Epilepsy 💜 has really run me down & caused me to get anxiety & depression. I even hear voices now & again but am due to see a Neuropsychologist about that as it has been most confusing & upsetting. I’ve even tried to catch what words I hear in my head but its so hard & upsetting. Also I’ve had those nasty thoughts which have been appearing in my mind now & then, most unpleasant. My Neurologist & epilepsy nurse know about this, they are so good as gold with me.

I even enrolled myself back at Talking Therapies but only got as far as speaking in an in-depth conversation on the phone. No appointment as yet. Hopefully that will help me too CBT or face-to-face counselling.

Big hugs to all that read this & sending my love xx

 

 

 

 

Epilepsy & Damaging Muscles

As I haven’t done a Blog for a few months I thought I’d do one as lots have been happening!

For the past 5-6 months my body has been slowly getting affected by my seizures. As I have my seizures more at night it’s not so bad, as can sleep the seizure off obviously depending on what time I have it, earlier the better!!

It seems when I have a bad night I have 2 seizures or more, which I’m sad to say I do have more less every day but on a good day I’ll have 1 seizure and on an excellent day it’ll be none which is rare!

As I’ve lived with it all my life I do try not to let it disturb me too much, though I can have my “down” days! Which is naturally normally when u look at it in reality.

Anyway about the subject I was talking about; my muscles! When I first noticed this I thought nothing of it and thought maybe I had overdone it whilst in my voluntary gardening job. But as this pain and aching in my muscles continued, some days worse than others but like I said at the beginning of this Blog, having seizures every night there was a slight pattern occurring. So I decided to visit to my local doctors & my GP decided to write to my Neurologist as my next appointment with her wasn’t until October 2016.

I’ve now given my voluntary gardening job up, which I miss awfully! but hopefully one day aim to go back 🙂 but I don’t know what my Neurologist will do to help me as the amount of days I’ve been hobbling around due to sudden muscular jerking by my seizures which I have mainly have at night & it effecting my knees, legs & back.

So obviously depending on how many seizures I’ve had that night, all I do every day is just sit down, resting but I do try to keep myself occupied at home. Though I have had a good night and haven’t any aches and pains then I go for a short walk to just get some fresh air!

My appointment to see my Neurologist and Epilepsy Nurse about all this is 16^th May 2016 and wow I can’t wait until that day!! 🙂

I hope every reader understands & enjoys this Blog, look after yourselves and take care x

After Appt with Neurologist

I had my appointment with my Neurologist last week & things didn’t go as well as I’d hoped.

Mind you saying that last year I had my Vagus Nerve Stimulation turned off since September 2015 due to my anxiety and at my appointment my Epilepsy Nurses and Neurologist decided to give it a go & turn it back on again, which I was pleased about. They did put it onto the lowest setting it could go but when I have my appointment again in March, then it’ll be upped a setting or two 🙂 But as soon as the VNS was turn on and I knew stimulation was going through me I panicked & went into a panic attack, started choking & almost fell to the floor but with the managing of my breathing exercises that I have been doing at my TalkingTherapies #CBT I managed to control it but was very knocked out afterwards. My neurologist was very concerned at the severity of my anxiety that she wanted me to go & lie down in a little room & I was given a cup of tea & we were allowed to leave when I felt stronger.

So now I’ve got poxy epilepsy & have panic attacks and the reason my anxiety has got worse is due to my epilepsy & the loss of my dear daddy last year. God bless him!
There’s me hoping to try a new epilepsy medication to help sort my epilepsy out but my Neurologist doubled my anxiety medication instead which I wasn’t greatly happy about but she did say hopefully in 6months – 1year they’ll be a new medication out for me. Fingers crossed eh! Good luck everyone 🙂 I hope you’re all doing well big hugs xx

Type of Epilepsy & Mood

A day rarely goes past without me having a seizure or 2 during the day/night and it’s really driving me scatty and running me down so without Dean, my other ‘alf, I don’t know what I’d do.
I know some of my twitter friends have a positive outlook on their epilepsy but I feel sometimes I’ve really had enough & some days it drives me to tears 😦 sorry this is so emotional but its how I feel.
I do say to myself “keep going Rach u can do it” :- get that smile back on your face! x
My consultant diagnosed my epilepsy as Multi-Focal Intractable Localisation-Related Frontal Lobe Epilepsy.
Intractable Epilepsy is a seizure disorder which patients seizures fail to come under control with treatment / medication there is a 5% chance of it improving fingers crossed. And my consultant said that as I’m hitting the menopause now it’ll either get worse or stop altogether gawd I’m hoping I really am!
As I’ve said in a previous Blog, had a Vagus Nerve Stimulation in situ since 2001 and a battery for it was replaced in March 2015 but due to my anxiety the VNS has now been switched off since September 2015. I feel the longer the VNS is off I just won’t want it put back on, I suppose I’m scared – silly really but it’s just how I feel.
Every previous medication I’ve been on from –
Gabapentin (Neurotin)
Sabril (Vigabatrin)
Perampanel (Fycompa)
Clonazepam (Rivotrivil)
Lamotrigine (Lamictal)
Phenobarbitone (Phenobarbital)
Epilim (Sodium Valproate)
And many others…….

But all the above had just had no luck in helping my epilepsy so all I can hope for someone to bring out a new drug, trying it out and just hope!
Big hugs Twitter friends and thanks for the support & luv xx

In Anxiety Recovery & Coping with Epilepsy

Last week I attended my 1st “CRUSE Bereavement Group” & this week I’m due to attend my 1st one-to-one with “Talking Therapies”.
When I went to “CRUSE” I was very nervous & after a night of emotion, where a few tears was shed, a few giggles due to nerves & general fun with the group too.
After getting a lot of emotion off my chest talking about my family loss, I am kind of looking forward to next week now as I feel “CRUSE Bereavement” will help remove a lot of my anxiety & emotion after my loss of Daddy dear 😦 God bless him!
I start my 1st week at “Talking Therapies” this week, which at the moment I don’t know how I’m feeling about attending, I suppose I’m trying not to think about it too much! Think positive Rach, I’ll be fine, it’s all to help me 🙂

Also I’ve started up Piloga (Pilates/Yoga combined) to help with my relaxing and to try and get me out the house more because as at one stage I was finding it very hard going outside without my other half, Dean. But I’m finding by doing this its slowly giving me more confidence. Plus helping me regarding my weight as due to my anxiety, I’ve done a lot of comfort eating so need to get the weight off! But that at the moment is really the least of my worries! Who cares about weight?

Looking at my “Epilepsy Diary & List of Seizures” I keep on a daily basis, that I keep for my Neurologist, I don’t think my anxiety has badly affected the amount of seizures I have had luckily! I’ve still had my usual 1-2 seizures a day, mainly having them at night in bed or early morning which then I am very lethargic the following day. I can either ‘vaguely’ remember them or ‘never’ remember having them which is a kind of a good thing I think!

I’m still on the anxiety medication but hopefully won’t be on that for long, because I’m going to beat this anxiety and well regarding my epilepsy I’ll keep going but I do have my down days as all my Twitter friends probably do! But I’m sure we all do our best 🙂
Big hugs for reading this blog x

Epilepsy & Anxiety Disorder

I don’t know how long I’ve had this now, but Anxiety Disorder has now been another addition to my life but it’s definitely not going to stay here for long!
I’m going to try my hardest to fight this one & am seeking help from “Talking Therapies” & also CRUSE bereavement Therapy.
When I was told from my Neurologist that I had this I was quite shocked because I wouldn’t have thought it. But it’s crept upon me, plus it has been a really sad, emotional year due to the loss of daddy.

Due to my Anxiety Disorder I lost my voice for over a month which some of my twitter friends might have seen from my previous tweets. My partner, Dean & I did think it was my VNS (Vagus Nerve Stimulation) playing up, so on seeing my Epilepsy Nurse she did turn the stimulation of the VNS off & my voice came back & then went for a few days, then I completely lost it again. So on another appointment on seeing my Epilepsy Nurse she turned the whole VNS off & it’s been turned off altogether for a good 2months now, but it wasn’t the VNS playing up all along it was my Anxiety.
It hasn’t really affected the amount of seizures I have had with it turned off which is good…. I know my VNS will be turned back on again but not until my Anxiety Disorder is better – soon I hope!

My epilepsy has really been driving me down to the ground as well. Seizures every day, sometimes I would have 2 or 3 a day or if I’m lucky I might go seizure-free which would be rare! On a bad day I would have seizures that went on for a whole day unless controlled by Valium or a trip to hospital to which I didn’t want as there is nothing better than your own bed & home to rest & sleep the seizures off & I think all my epileptic friends on Twitter would agree with me here 

I will admit, I am a very sensitive person & do worry a lot which I know isn’t good for an epileptic & it just takes one upset for me & I’m tearful. I expect that’s the anxiety taking part in my life that at the moment.
I do find myself eating a lot of sweeties at the moment & I have put half a stone in weight in on but that’s the least of my worries really…. I always find Twitter & a good old chat with my big Sis helps as she always talks a lot of common sense & perks me up & makes me laugh if low!

Bullying & discrimination with Epilepsy

Don’t get me wrong whilst reading this as I did have some real genuine friends at school but it was just a certain few bullies that knew how to upset & tease me due to my seizures. We are talking over 20yrs years ago now, when I was at school & in my teenage years but my mind is still haunted with what the bullies said & it still quite upsets me when it does creep into my mind. Words like “epi”, “schizo” “oh she’s going again, she starting!” giggling whilst saying it.  Now when you’re young & hear words like that it’s not nice at all but I know that some of my Twitter friends do use the word “epi” now, but I know that word is definitely meant in a different temperament than from when I was at school 🙂

I couldn’t talk so openly on other social media websites as I like doing on Twitter; reason being is I know a lot of my “school friends” go on these certain sites.
I know a lot of you will say they aren’t really friends if they bullied me & I agree no, they aren’t my true friend but I suppose they’ve grown up & some have got children of their own so I’ve given then the benefit of the doubt, as it’s in my nature to do so.
But I’m still upset & it hurts me when I see the bullies name or the actual person, which luckily I don’t do much as we have all gone our own separate ways now we’ve become adults.

Several times throughout my previous working day’s I’ve been hit badly with discrimination due to my epilepsy.
I used to work in retail therapy where I was on the tills serving people. I used to enjoy it too being a people person. I can’t remember what year it was, but one day at work I had a grand mal seizure & fell to the floor knocking my colleague by accident.

When I everything was more less back to normal & I had recovered, I got told I had scared & upset many customers & injured my colleagues elbow, next thing I was told was I had to leave my job due to what had happened & due to scaring & upsetting many customers as well as injuring my colleague, I was stunned & it knocked my confidence terribly! Luckily I was in a member of a Union which helped a little bit & my other half wrote to the Manager of the main store complaining of the horrible situation I was put in & I just felt well….. Word’s can’t explain how I felt, even now!

This has happened several times now loss of jobs due to my epilepsy – discrimination. It’s just really not fair, why me, I say! I just really feel there are so many people out there who are ignorant to epilepsy & need to understand more about it hence #epilepsyawareness

Seizures & Feelings

First I want to thank all twitter friends from reading & liking my 1st blog as I must admit I felt a little uneasy (daft Rach) doing it but as many friends told me just write everything on my mind down & it’ll be great.

When I have bad days with my epilepsy say for example; have lots of auras or “de ja va” feelings I find that doing my Take A Break Magazine which contains lots of x-words or word searches helps.

I also have the odd situation when I find it hard in the head in thinking that what I’m saying isn’t coming out right & comes out all wrong.
Its weird & is quite hard 2 explain but when this does happen other people say your speech is fine its just you? Which then confuses me? So why at the time did I feel as if I was going to have a seizure? I just say to myself “be strong Rach please be strong!”

I definitely have the family & friends & even a great Neurologist Team who I know are there for me whenever I’d need them but, to be honest I really can’t understand my brain but I expect that how all my epileptic friends on twitter feel.

I won’t deny I do get very fed-up with my epilepsy. I know by doing that it only gets me in an emotional frustration & due to the amount of seizures I have during the day or night whether they are absences, tonic clonic, simple partial & complex partial seizures, it really gets me nowhere.
But I know whenever on low through having my seizures I have great friends on twitter to talk too which is really appreciated  big hugs to you all
So on that happy sentence bye for now xx

Life of Epilepsy

I’ve had epilepsy since I was 4months old & it seems alot has happened as it probably does with all my epilepsy friends on Twitter. I’ve actually got Left Frontal Lobe epilepsy.

During my school years I think i was at my worst with an awful lot of seizures everyday and was in and out of hospital like billy-o. I do remember one day having 20 seizures one day. My poor mum really had alot to cope with and she was so good with me and so strong too as we were in and out of hospital so much! Whether it was my hormones of growing up I really don’t know?

I finally left home but the only reason for this is I got admitted to a Neurological Hospital there Frenchay Hospital and on it’s grounds was a little hospital called The Burden Neurological Institute where I was an in-patient for several months. I had an awful lot of treatment at this hospital ranging from EEG’s, WADA’s Test (Assessment before Brain Surgery) & Ictal SPECT Scan’s. But due to the results being what they were it wasn’t advisable for me to have Brain Surgery so thats where I was offered my VNS (Vagus Nerve Stimulation) & I had the operation to have it put in 2001 back at Bristol.

I won’t deny I do get fed-up and emotional at times at the amount of seizures that I do have, which can range from none a day luckily – 3 on a bad day. But they do occur most days! I find Twitter helps an awful lot and on even my low day I’ll perk up chatting away to my Twitter friends 🙂

So this is my first Blog….. let me know your views and big hugs to all.