Cadbury World

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What girl does not want to go to cadbury world, the place where chocolate is made! and in my case dreams !

Ive always wanted to see the world of chocolate, to be in the biggest chocolate shop in the UK and to smell chocolate being made. It was a 2 hour trip to Birmingham – I really didnt realise it was so far. When My bestie said about going I never thought it would be so far. We arrived after the journey and entered Cadbury world. 
there is so so much to say about cadbury world but if i did then it would ruin the surprise for you going yourself.  There are alot of talks, lots of lessons about chocolate and a chocolate bean ride, 
We were bombarded with chocolate bars at the beginning and then little pots of heaven… i mean to say little pots of melted chocolate around the course of the tour. 
Then you get to write your name in chocolate and watch chocolate being made the new way and the old fashioned way. I could never work in a chocolate factory it would be far too tempting. 
There were lots of shapes made from chocolate,… i even found a chocolate clarinet and saxophone ! 
Sadly these were not for sale. 
the day was fab, very tiring and i was struggling that day but totally loved the experience.

Robin Hood Country

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I am just going to say that the holiday blogs are going to be just that until the thursday. Yes I had seizures during the week. some big ones, lots of little ones but for once I want a little bit normal stuff on here just a week. 

So It is Sunday and sherwood forest was calling… Well not literally but we were off to sherwood forrest. This is something Ive wanted to do for more years than you can imagine.. It was on my bucket list and something that i read as a child and said then “i want to go there” ive said it with ashdown forrest too (the 100 acre wood for those of you that do not read winnie the pooh novels).

Anyway we were all ready (ralph, Linda, Mum and me. Jade couldnt come which was a shame but we all piled in the car). Ralph I now know is a ex chauffeur which makes total sence now as he took us the long way round to show us the beautiful sights of the area. I was literally stunned when we came across sights such as this:

We arrived at Sherwood forrest… somehow it was not how I imagined. This is not a good or bad way just completely different than my pictures I had in my head. It was also alot bigger. It seemed ages before we got to the car-park and then we had to walk a long long way to the Major oak. The major oak was stunning, though tainted by supports that kept the branches from falling down in storms. It seemed so sad that something so naturally beautiful was now subject to being held up by man made structures. However it was still beauty, Just like everything, beauty lies within.

There were other trees round the forrest that were “quirky” too 
This was my favourite 

on the way home we had a picnic in the grounds of a beautiful abby, It was like a dream, I had just visited the major oak and was now on the grass picnic and blankets and calm, peace, no grr’s nothing. seriously amazing all I can do is thank the people who made it happen because you will never know how much that meant.

Mum, Me & Ralph
Mum and I 

Me and my best friend 

By the time we got home I was exhausted, I ached all over from lots of walking but It was one of the most amazing days ever.

living in a bungalow !

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The next day was saturday, this was a chill out day really as we had a important show to go to…. jades! 

We did however open our pressies we’d brought each other and dyed my hair… purple ! yes i know bit crazy? but hey it was something off my bucket list so why not ! 
Anyway we dyed my hair, it went how I wanted it to in the end… it was a bit traumatic really as i had to have it bleached first….. i have a hell of a lot of hair. By the near end my head was pounding and I was getting tired but we finished it and the result? amazing ! 
me and linda, the pink and purple girls!
During and after hair dying we opened our pressies,…. I found out this was not just going to be the only thing i ticked off my bucket list ! 

there was also one more (picture cannot be found yet!) 
anyway all pressies were put to one side as we had a show to prepare for ! 
Jade was red riding hood in the play into the woods in the GAPA variety performance, I’m proud to say she stole the show.

The first half to be honest could have done with more work and it was only jades group dance that saved it. The second half was excellent but then im biased as Jade was in the second half alot. It was great to finally see her perform and do her stuff. One talented lady is going to come out of that girl and even more so now she is starting college. 
We came home (or rather we sat on a street wall for half a hour as James came to rescue us from our flat tyre).
James did rescue us and we went home. I sorted a entire 64gb worth of photos out and then woke up under the table ! Yeah seizure hard concrete floor but lovely people thankfully caught me… or so im told ha ha…. i didn’t have too many bruises anyway! That was the first sudden seizure Linda had seen… It was really horrible waking up on someone else’s floor not knowing what they just saw. Linda is one of my bestest friends in the world but it didn’t make it any easier until I felt that hand. Somehow when someone isn’t afraid to hold your hand you know its going to be ok. 
Yes this seizure may have been caused by tiredness, exhaustion, and lots of music light and a headache but it could have happened anyway. I always think that unless i fall and drop there and then at the point of the lights camera action or whatever… it could be anything. 
After I recovered we went to bed… Stairs after a seizure Very new concept of trying to tell my legs, feet and body to move in a upward direction before I can rest (i live in a bungalow and im so glad!). 

Holiday preparations.

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So Friday 28th we were due to go to Lincolnshire to see one of my bestest friends. The packing was a well…. Ummm….. Challenge. Lots of pressies and lots of stuff which I felt I needed (I still think I need it) plus a lot of medical stuff (whole suitcase to be exact). A few play about bits including my old flute (don’t like being without a musical instruments).

Finally we were ready. We had to take Magick to cattery which although it was the best cattery around 5* and very lovely people I still had a lot of tears. He had all his home comforts there though and looked ok when I left. I try not to think of him too much as I know he will be fine. 
The taxi came, Nigel was lovely. We had lots and lots of traffic on the way though 

Eventually we got to Lincolnshire, OMG the scenery. Lots of fields and pretty lanes. Some we saw as on the way to Linda’s we got a little lost but finally after about 5 hours we arrived at Linda’s. 
Cuppa and meet the dogs and chill out was for the rest of the day. It’s was lovely to see her again. 
We went up to our room and the bed was lovely made and there were Disney cushions! So fab… And they were for me. What a surprise. I am a huge Disney fan! 
There was even a finding Nemo one…… 
“Just keep swimming” 
After a long days travel my head was quite bad, a little while on the oxygen and it eased a bit though. Bed time was very welcomed. So much fun ahead of us. 

traffic jam! Gig and hospital

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This morning is 22nd June. I had my consultant appointment at 10 so I couldn’t leave home to the gig any earlier. we got up and ready and went to my appointment. That was both good and bad. Good that after reviewing the EEG’s better they have better idea of the issues surrounding my temporal lobe areas. Bad news being that after this I now have to go back to London where the treatment is better than down here. I don’t know what this will entail yet but it’s a wait and see. I’ve normally been going to kings college but this time i have to go to the national hospital for neurology and neurosurgery. It’s a bit of a bummer but at least it’s another step forward.

After my appointment I ended up  sitting in a 5 hour traffic jam on my way to the Kent airshow as I was supoesto be playing at a gig there. Eventually (after the 5+ hours) we turned round and came home because the band had already played and by this point I was not interested in walking round a field of planes. 
By the time I got back to nan and grandads I got out the car and my legs went to jelly… I literally got out the car and crumbled into a heap. In the end I had to laugh. 
In the car in the traffic jam! (Before I got bored! This was about hour 2) 
The very long traffic jam! 
My wristband ready to use

Worries, Happiness & Prayers

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My last post was about sci-fi weekend. well the next day I had band.
I managed to get enough rest to go to band. I love band but with Epilepsy there are a lot of things, worries, situations that I have to prepare for that many people do not see. Monday night my friend was not there.. It meant that before hand I had to deal with mum who was in a small state of panic as to what would happen and how would I deal. I got over this by mums phone number on a piece of paper being given to the conductor… I really hate all this but its safety I guess plus no one would have known what to do really. The next problem was that the gig the band are doing this weekend is at the East Kent Airshow. its a huge event and we are playing.. however to get in you need a ticket. The band get in for free however tickets are about £20 ! thats alot in our world. Money we cant afford for a gig that mum really didnt want to come to apart from to make sure that if I were to have a seizure I could be safe and she could help me and get me home, administer my pills and oxygen. Anyway we got given a wristband each at band and i was praying there would be spare ones… i dont know if there were or were not because they disappeared quickly. They were very coveted. Some people knew my situation and one extremely nice band member who already had brought a family ticket gave me their wristband. I am so so thankful I dont think they can ever know how much that meant to me. Mum hates planes and noise but knows how much i wanted to do this gig. I am so so happy to have the oppertunity to go.
Of course it will all depend on if the beast lets me have a good day but fingers are crossed.

Its not just the gig and the beast I have to worry about saturday. I have a appointment with my consultant on Saturday morning before the concert. Im really worried about this appointment as I get news of what next. Having this news prior to a important concert is not really how Id like it. I worry that if it is band news I will not play well. Then again if it is good news im going to be so so bouncy!

All I can do until the morning is have faith and pray.

Weekend & Confidence boosting.

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Well last week I was on the verge of breaking down, this week I hope things are on the up. My weekend started Friday when I had an appointment with my Dr about my ECG and the probability of me going on the new pills… Well Due to the ECG and the “unlicensed” meds The answer was a No – However he will prescribe them if my London consultant says yes. I have an appointment with him on  22nd. Fingers crossed once again. 
For now Im stuck with the situation im in. Medication making me tired and sleepy if I take it – having seizures and being in pain if I dont. Its a conflicting situation. I have no choice with the seizure meds but I try and hold off on the pain killers as long as I can. The likes of Codeine, ibuprofen, Diclofenac and some other injection that I cant spell and morphine are not nice meds to take.

After the recent events Ive been really like a recluse an not wanted to go out much for fear of seizures as they have been quite bad… except the drs of course. 


However This weekend My weekend started friday. 

1) My Grandad is out of hospital. Its a long story but he went in for a knee replacement last year which went teribly wrong. His leg had to be straightened, a year later and the work they had done had broken and crumbled and so he needed another op to repair his crumbling bone. He is now out of hospital with a straightened leg and two rods and bolts through it and in plaster however it is fab to have him out as he normally ends up really poorly in hospital with infection…this time, so far so good all is ok. This also means mum and i do not have to live up there to be with nan. Not that I mind but it is one less hassle of taking all the necessary things up there. And they are both happier now they are back together. 

2) My Camera arrived. Ive been asked to do alot of blogs and vlogs recently and my video camera I previously had (the Flip HD) was not up to the job, plus its hard to video yourself when you cant see what your video’ing. Now I hate videoing myself, moving picture is fine but if I have to talk im not so happy however I do it for Epilepsy awareness so Im trying to get over my fear and improve my self confidence by doing this. Also I need it for the next piece of good news. 

3) Friday I got the news that I am reviewing things for this new company IWBYE which stands for “I will beat you epilepsy”. I am honoured in being the first person ever to receive one of their tshirts designed by them and I will be doing reviews of their products via this blog and my youtube channel (tiggerifficjem) please go take a look at my channel and subscribe. It is totally free to do so and you will get a email when I upload a new video. Also the more subscriptions I receive the more knowledge gets out there and the more I will be doing. 

You can visit them at this address

Click here for IWBYE

4) This weekend was Sci-Fi weekend. Saturday Lara came over and we chilled out, she visited me at studio Tigz  (my little craft and relaxation room) and we had a good time. I re sealed her dreadlocks and we done nail art In preparation of sci fi day. I may look into making some dreadlocks as apparently Lara thinks I would be able to do it and there are few people to get them from. So I will be looking into that when I get back off holidays. Ive got too much to do until I get back.

5) SCI-FI DAY: Yes today Is sunday. I am sitting on the sofa, in my pj’s totally exhausted. I have been here since 2 o’clock this afternoon! Today was the first time I’d been out properly since being poorly again. I wasn’t feeling my best when we left but I took meds and felt I could do it. With Lara by my side I always feel happier. She is one of my true best friends who Ive known for many years and It doesn’t matter where in the world/country we are we will always make time for each other  Anyway so Im exhausted but it was all worth it. Lara came over early and we got ready, Hair and last touches of make up – not that mine was anything spectacular but we both felt better – I wore the Superman (girl) tshirt that lara had brought me and we were off. We arrived at 11am and had a look round, From the outset we could see many characters and costumes and stalls and music and people – there were hundreds of people ! We handed over our tickets in exchange for a hand stamp
The Giant Ghost buster marsh mellow was hard to miss, There were lots of lovely people there including those that helped organise and set this extravaganza of sci- fi up. We walked around the first few stalls and then came to the Activity box stall. It was really good to see Abi and Barbs as I’d not seen them for so long. Lots of hugs all round and I felt happy to be out. My confidence was growing. I left my oxygen behind the stall as It is really heavy. We looked round a few more stalls until my legs couldnt carry me anymore so we went back to the activity box tent for a reset and chat. It was great to introduce lara to other people in my life. I like it when everyone knows everyone – I guess thats the country person (as my grandad would say) coming out in me. I went to another stall on the next look round that done face painting/temorary tattoos’ I chose a nemo design an had it on my cheek. I love the Finding Nemo film – especially the quote “just keep swimming” i really believe that if i just keep swimming in life I will get through this. 
 The day went on and we took lots of photos and video (i tried to do a scilent VLOG for my first one to get my confidence up so I will be sorting and editing that in the next few days and it  will be up on you tube. 
My head started to get worse and at 1:15 I called mum to come and get lara and I . Lara had to go home to Essex too so she had a long trip ahead. I came home and apart from editing a little video and photos I have been resting. I face timed with my other bestie Linda which was fun… I love facetime. We are both getting really excited now about me going up to visit soon. I cant wait. Lots ot do and fun to be had… Of course I will be bloggin! 
Nite Nite for now and Thank you to all those people who made today possible and to those who made me feel more “normal” 
XXX

Confidence again?

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Well monday. I was sitting at home after sleeping on and off for the majority of the day. It was band practice night. I love band do not get me wrong but As always after a bad spell I was super nervous about being anywhere that there are alot of people and Im in this sort of space. hey ho. I went. All was fine but I felt exhausted and drained and it was so so cold but I enjoyed it all the same. 

The rest of the week has been a bit crazy.  I had an appointment at the drs re my neck being so so painful. So I went and I came home with literally a bag full of medication. It was a new dr who I handnt seen before…. Normally this is bad news as they are scared of changing anything without my consultants approval. This one was different though and very thorough. He went through everything – epilepsy – cluster headaches – my recent pain in my joints and especially neck – questioned me about my pcos which I don’t really take much notice about. Anyway I was sent for a ECG re going on theist resort pills for cluster headaches. I have had this ECG before but it came up with a problem and I wasn’t allowed to go on the pills. This time he thought it may be different so I booked in for the next day. ECG done and well yep there was a issue in amongst all this I’ve been trying to get my prescription for my emergency injections and after two weeks I still can’t get them. The chemist is now going to the manufacturer to see if they can get some. I prey they are here by my holiday. I can’t be without these things. It’s ok being about here cos I can go to the hospital but its not the sort of thing I want to do on holiday. 
Anyway here we are it’s Friday and I’m off to the drs again this time to talk over the new ECG and the probability of being able to take the new meds and to find out what the heck I going on with my heart. 
Life can be hard sometimes but I got to laugh and enjoy it when u can. I’m a bit excited today as I’ve treated myself to a camcorder! I’ve been using my phone a lot for film but its not very good so I’m hoping to be able to do some film and maybe add bits to the blog. Maybe do a vlog! Anyway I will have to work out how to use it first- may take a while! 
So apart from dr appointments and wires, injections and that this week has been pretty quiet. 
I have had only a couple of seizures a day and yeah that’s good for me!



So I’m mega excited about a few things  going on in the next few weeks. Firstly my friend is coming down this weekend again and we are going to sci fi by the sea! which if i can i will try video a bit if the camera arroves. then mext weekend the band I’m in is playing at a huge air show. The weekend after I am on holiday (my first in 5 years!) and the weekend I get back I’m going to a ball ! All I have to do is get through it all and have the confidence in my brain to enjoy it all. 

Easier said than done but I am so excited! 

Hospital again and drug trial

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Well things didn’t get better after the last blog. I ended up in the large hospital about half an hour away, my head pounding and the seizures not stopping. I’m limited into what can happen how as most the drs don’t want to take me to theatre to administer the drugs I could do with fast. So I end up with lots of muscular injections, oxygen and oral meds. I thought this had worked and we managed to get home Monday morning. Unfortunately this wasn’t the end.
 I ended up with one of my own dr’s coming out a few hours later as the hospital drugs wore off and I ended up in the worst pain known (cluster headache has really set in). Having epilepsy is one thing but add that to this disease called cluster headaches which is defined in medicine as “the most painful condition known to man” and life is somewhat harder. So here I was more injections and drugs. My neck was really giving me alot of pain too as Id hurt it in a previous seizure a few years ago and it is a recurrent thing which normally gets better after a few days…. this time it hadnt. It just added to the pain :-(. 

For the next 24 hours I lay in bed sleeping, waking intermittently and more sleeping. I was trying to keep awake but it wasn’t happening my body once again taking over.  

I did eventually manage to wake up and be more alert but the drugs were making me sleepy. I had to get an appointment for the dr that week so 3 days later (when I felt strong enough to get to the surgery I tried to get an appointment. Well like most Dr’s surgeries in the UK despite being told by the dr to make this appointment the guard dogs (AKA – drs receptionists) wont let you book an appointment unless you are dying which at this point I thought I was with my neck. 
The next day I tried again…. I managed to get an appointment with a dr I’d never heard of. 
This is normally a waste of time for me as not many Dr’s are willing to change any medication or do anything without my epilepsy and cluster consultant’s and London consultant being notified first. This Dr however was different. He was lovely. He even had a skill very far and few between Dr’s ……. he listened. 

After a chat and examination it looks like ive damaged my neck as Ive had years of seizures.The epilepsy medication damages the bones, nails, teeth and all things like that so with the combination of medication since i was 4 years old and the recurrent seizures slinging my neck in awkward positions it is not surprising. I received some pills for my neck and then he asked me many questions.. We now have some different injections for home as well and medication to help the seizures when Im going through a bad spell. I already had some but these ones are apparently stronger and the ones I normally have whist in hospital so should mean another step away from hospital. Great!. 

About a year ago now I was told that there was a new drug to help the pain I get from my head and seizures and cluster headache however it was strong and acts upon the heart. I was told to get a ECG heart trace which I did. This was given to my consultant and I was then told I couldn’t go on the new drug. I was not given much of an explanation to my satisfaction apart from it was not right. Therefore I asked this new GP what was wrong with my ECG. Apparently he couldn’t even find it so I am due for another trace on Tuesday. Fingers crossed I will get a better reading and be able to trial this drug and maybe get relief. 

In the mean time I am also staying at my nans during the day at weekends with my mum as my grandad went into have his leg straightened again on Monday. The week has been hard but Ive managed one hospital visit and im at nans as I type. I am so sleepy on the new drugs and feel like im under water. Everything I do is an effort but I am forcing myself to get back to normal. 

Yesterday (Saturday) I installed Laras Dreadlocks ! I had never installed dreadlocks in my life before but with the help of youtube (god I love youtube) I managed it… 

Im really pleased with the result and I think Tink is too.


Today Ive rested and Im on the strong meds again as my neck is pretty painful. It doesn’t seem to matter what I do or what position I am in it makes no difference so its just medication and grin and bare it. The seizures are still unpredictable as usual and I need to get my confidence back fast. 
A spell like this always makes me think about doing anything or going anywhere cos what if I had a seizure…. but if you live life like that you may as well not live at all. Grab the bull with both horns and have faith no fear. 


Tomorrow is monday and I so want to go to band practice. I am going to see how I go and maybe even if I sit out for a bit I will at least get to play something. 
I love my music and could really do with chilling out at band and not thinking about much while I play. I miss everybody too. Strange really as you rarely get to talk to many people while there but Its nice to be with people who I do class as really good friends. 


Kent Coastal Concert Band is an amazing band.


My experience with epilepsy