Tag Archives: adventures

Heartbeat

This is just a quick entry to explain what happened today and why I’ve not really spoken to anyone and said yeah drs fine, 1) because i’m too exhausted and 2) because I don’t know whats what yet. 


Well today after a night of head pain and added noise of a cold and windy night and out back gate banging in the wind and hence very little sleep I toke to a day at the dr.’s…. little did I know this at the time. The 1hour job ended up taking 4 hours! A lot of waiting was involved and Im now typing this after having a sleep and I still feel exhausted!
I left the house at 8:45 and managed to get my appointment with the dr, We just went over what had happened over the past couple of weeks and made some minor medication adjustments and then was sent for a ECG. Last time I had a ECG my heart rate was slow and as I am now on the new drug which can cause problems with the heart they are keeping and eye on it. I was really pleased when I asked the nurse from behind the curtain if my heart rate had gone up and she said yes… I thought this was going to be far better than my last appointment. How wrong could I be. 
I got dressed and the nurse said she would show the dr. Well it turns out there was something wrong with the ECG this time… I was ready for it though as Id been given a copy of the ECG which read “abnormal ECG”. I was tired, cold, my head and feet hurt and I was fed up with waiting ! 
An hour nearly passed in which time all things wonder through your head. Finally the nurse came back and blurted some stuff which I have no idea what it meant “A Junctional rhythm with non-specific ST and T wave abnormality – Abnormal ECG”which was pointed out to me on this paper followed by a the doctor wants you to book another ECG friday afternoon with an appointment to see her afterwards. Well i though i’d never get an appointment for that soon and for both at the same time… well actually I did which is unheard of at our surgery… normally I’ve been booking my ECG’s a week and a half beforehand. So mum was standing looking kinda freaked out… to be honest Im not overtly worried, Yes I’ve had some chest pain but this isn’t anything new from my last ECG and nothing bad has happened yet so why worry what a few lines on a bit of paper say!. Friday is just 2 days away so we will find out more then. For now i’m not thinking about it. 
Needless to say being at the dr’s for that long was exhausting, I’ve had a little sleep and now plan a long hot soak in the bath. 

Other than the escapades of today things have been slowing down a bit. The headaches are easing although still getting on average 3 attacks a day. Im now able to concentrate a bit more on the fundraiser and am making awareness ribbons and other things ready for 19th October. Its all quite exciting as i’ve never done anything this big and organised the lot before. Its going to be really good though and Im really hoping people turn up so we can raise lots! 

Well Friday I had my repeat ECG. It was a bit of a nightmare and I’m putting it down to being Friday 13th even though I’m not really supersticious. The surgery computers had crashed and that included 
the ECG machine. They finally got half of it up and running so I was able to have the test done. The dr came in while I was having it done as she wanted to see it. It turns out that the on previously had shown I had first degree heart block. The dr was hoping that the heart would recover and only do this occasionally and recover in between which it looks like it does. At least I know know why I get my chest pain every now and then however good news is that so far I can still stay on the pills but need close monitoring. 


Pushing boundaries

It was amazing to see my friends from Australia yesterday. I really enjoyed the catching up we did and it was lovely to see them well and hear all about their travels. However I am paying for having a good fun day yesterday. I didn’t go mad yesterday, I was really very slow in what I did as my head was still in quite alot of pain as were my joints. However I pushed a little and made it to talk and have a cuppa coffee. 
Despite this and being careful and mum doing the preparations and still taking my medication today I am in agony. The pain in my head is much worse, i ache from head to toe and Ive already had 2 seizures today and I think its pain induced. The cluster attacks are more than yesterday and the day before. Im really struggling. Im tired too as last night I was woken many times in pain. After taking my pain meds the sleep is not what I call real – its forced and drug induced and i can still feel the odd stabbing of pain despite being asleep. Its hard to describe.

However was it worth it? Yes. I cannot stay locked away in a darkened room all my life. If i have to live the next however many years of my life like this then Id rather push the boundaries every now and then to do something great than not.

Fun in my life seems to have a price. No matter if  it be having a seizure at the titanic ball or being in more pain than usual because I did more walking or more of whatever. The price is normally paid by mum moaning about how I shouldn’t have done (fill in the blank here) and me saying I would rather live my life and push the limits and pay the price than not have the life or experiences at all.

I think mum can see both sides of the story – or I hope she can. I hope she knows that I don’t do any of these things to annoy her or cause her trouble and Just because I do something she doesn’t agree with it doesn’t mean I think any less of her or do not love her. its not. It because i want to try to be “normal” (whatever that is). I want to live life rather than spend it locked away. 

I love mum dearly. 

You only get one chance at life though and I plan to live it to the fullest I can, and yes I will push the boundaries the next time I want to experience life. 

Don’t loose out on life, you only get one chance and it’s too short for if’s, but’s and maybe’s. 
go enjoy what life has to offer. 


Splitting & Moving

I was discharged home to my home with mum. Gavin was having to work so being in an hour and a half away on my own was not a good idea till i got on my feet. Although Gav was good in the hospital when i got home things changed. He became grumpy and wanted me to do things and go places and I knew I didn’t have the energy for . I still couldn’t see and i was scared. How would i be a nurse if i couldn’t see? 

Mum had phoned the university and had my course suspended until i could return they said it wasn’t a problem and all would be ok. This put my mind at rest. 
It took a couple of months before my sight returned, It was still blurry and i i get re-occurent blindness after a big seizure. but i got stronger and stronger. I was able to walk and finally i could see too. 

I went back to life with Gavin yet things were not the same. I was not prepared to do the things that would push me as i was scared of ending back in hospital. Where as once we would travel for hours i was now scared to go more than an hour away from places i knew. 
The relationship ended and we went our separate ways. 
I returned home to mum who was more than happy to have her little girl back. She was far from happy with me moving out in the first place and to have me back at home also meant she had backup with my dad. 

Dad is a whole new story, We have had a off relationship for as long as i can remember. The first memories i have of dad are of me being shut in a dark room with him holding the door closed. The memories that followed were not good ones either. I dont dwell on dad too much. i can’t change him, and i don’t think anyone could. Life is a fight without trying to win one i know won’t happen. We live our separate lives and thats how things work. 
So anyway mum was glad to have me home. 


On 28th August we were due to move. I wasnt going to be moving with mum and dad but overall I’m glad I did. Since moving I met new people, friends and had good times I would never have done if I hadnt moved.
Moving day was difficult for me despite this. Not knowing that good things would come of it I was moving to somewhere I knew little about and didn’t want to be.
I had made friends where I was, I’d grown up partly where I was and I felt comfortable. My house was lovely and I like it I was not keen on changing to somewhere else that was not homely yet. I’d moved from home to be with gavin and now I was packing boxes ready to go again.
Now I’m a Kind of person that would think nothing of going backpacking if my health was different so at the same time moving and packing boxes was an adventure that I also used to de-clutter and clear out. I threw out loads though my Disney collection stayed.

Moving day was difficult. I was not feeling great and I had already had a seizure that morning. Yet as I la on the last remaining piece of furniture I watched the removal men carry out our belongings and bundle them into a white lorry. I moved and the last piece went. As I sat on the floor looking around I was engulfed by sadness, I was overwhelmed as I remembered the happy times I’d spent in this house,

                 
Old House
New House


Welcome, & my decision to go public !

This Blog is about my life and ride with Epilepsy. Through my own personal journey with epilepsy I want to help other people and let them know they are not alone. So many times i have felt alone…. even in a crowded room, vulnerable… never knowing when a seizure will strike.Ive been writing long before blogs were invented but it is only recently I discovered the impact that a web journal or “blog”  can have on the areas i cover in my writing. Especially on subjects close to my heart that need help to be published and awareness raised. I entered the world of “internet and epilepsy awareness” about a year ago and discovered truly that I wasnt alone. There are other people out there thinking the same as me. Struggling like me. This writing has previosuley only been my personal Journal, however through gaining confidence from the people i’ve met online and with the urge to raise more and much needed awareness of the condition I want to make my words public. This includes the non-edited raw truth about my life.I thought one day i would edit it and make it all nice and fluffy as i call it… but why? life isn’t like that and my aim is to show the truth out there so here we are. I started blogging on another site a few years ago but left all entries private… since deciding to “go public” I decided to move to blogger as they seem to have more features which I like…. so here it goes. (please bear with me while i move my blog over as this may take some time) Through going public I hope I will be able to raise awareness but also raise money in the aid of research for more treatments of the condition. so far this year my total is £720. Please give me feedback on my words and donate to my just giving page if you are able.