P.s........

There isn't anyone else I would rather be locked in that cupboard with!.......well as long as people can still pass me chocolate through the letter box :-)

Locked in a cupboard!

Have filled in all the forms, ticked all the boxes, spoken to the right people and done all the appointments. Well at least we think we have!!!.......for now.
'Hard times' is what me and Lee keep saying to each other!

I had 2 mega seizures in one day last week, that has never happened in the history of 'Jane' (2 big one's in one day). My seizures just scare the shit out of me now! Never knowing if it will be a mild or bad seizure. Not feeling safe on my own or with Jamie. Scared to do anything 'just in case'. I haven't just been 'freaked out' by my seizures and become a sad recluse loner type person over night. Its not a case of 'my seizures are bad I don't wanna go out, I'm too scared to do things on my own now'. Its been nearly a year of my seizures gradually getting worse to end up with me being/feeling this way. I've always been a 'just get on with it' type person and over the summer my seizures have slowly worn away at my 'oh fuck it, lets just do it' attitude.

My re-accruing story in short.....
Have a bad seizure, fall & hurt myself.
Scares me, knocks my confidence, don't do my usual stuff and hide away for a while.
After a few days-a week think 'fuck it, be brave' and pick myself up again.
Try to carry on with my usual life/daily routine with Jamie.

Imagine doing that over & over again with your seizures getting worse and more frequent. Each time having to be brave and try and get on with things.
Well my seizures have taken all the 'fuck it, be braves' out of me.
It has also become unsafe for me and Jamie to be out and about on our own as I never know when a bad one is gonna hit me. So even if I had any 'fuck it, be braves' left in me. It's not worth putting me and Jamie at risk.

My seizures have become even more scary now as I choke and don't have any control over my mouth or throat towards the end of a 'bad' seizure. So I don't want to be on my own really.
At the moment my family are trying to pull together to help look out for me and Jamie, but realistically it's only a short term solution.
So after the shit summer of shite and how my seizures are continuing to get worse, me and Lee have decided to look for some kind of proper care/help now. Which is a very hard thing to do for both of us. But it needs facing and doing.
That's all I wanna say about that for now.

Went to see my 2nd opinion consultant today, not impressed!! anyway she's put me on yet another drug to try on my seizures, Zonisamide (drug #8) a fairly new drug. That will take me back up to 4 drugs at the same time again. Will start that one in the next couple of days. Still having crappy side effects as well as seizures everyday. So life is jolly la la.

Me and Lee have had some really tough times over the last few weeks and still are! But at least we have each other to get through it all, even if we are moody fuckers at each other!! It's so emotionally hard and stressful, I couldn't even blog that down if I tried.
Only me and Lee know what it's like to be in this nightmare!
'Jane way' of explaining it: It feels a bit like we have been locked in a cupboard from the outside world and the key is inside the cupboard somewhere but we just kind find the key. We get stressed at each other coz we are in this cupboard and neither of us can find this fucking key. But we still keep trying. No one on the outside of the cupboard can help us find the key, coz its inside the cupboard. But they can still pass us food, drink and encouraging words through the letter box!!!

Not that I've ever been locked in a cupboard with a 6ft+ skin head before!! but you either get the 'Jane way' of explaining things or you just think I've lost the plot and you don't 'get' me!!! I think that most people mainly think 'lost the plot'.......never mind!!

Quote of the day

Love does not make the world go round
Love is what makes the ride worthwhile

Facing another week of struggle!

Tears yesterday knowing I've got to face another week of struggles. I have even written on my calendar 1 house job to try and do each day (how sad is that). Even tho totally knackered I managed to get my 1 job of the day done, but had a seizure doing it!.
More side effects on drugs this week: cognitive problems e.g short term memory probs, unable to multi task, slow thinking, forgetting what I'm gonna say or do, still having headaches and struggling with tiredness. To top it all off I have a stinking head cold too now.
I just can't stand this daily struggle any more, it's become to much for all of us. We are now looking at getting some care help. It's depressing and upsetting as you have to go through all the in's and out's of your illness. Explain everything, tell them all the shit that you don't wanna be reminded of. Explain what your days are like and when you have to say it all out loud and to a complete stranger its hard to keep it together.
I feel so alone, I just can't even begin to try and explain!!
Welcome to my week........

Mines finished.........

.......now it's your turn.
I think it's your turn to tell me things 'you think' I might not know about you. Off you go.........
Don't think I need 100 tho :-)

Need cheering up, having a bit of a shitty time at the moment or should I say shitter time!

Am a bit floaty!

Been suffering with bad headaches this week. Been taking strong pain killers, which make me feel a bit 'floaty' Headaches are probably a side effect of Clobazam! been up, down and all around on this drug so far. Done a bit too much today I think! it's because I'm not feeling as tired at the mo, so I then tend do more and then flake later!!

100 Things you might not know about me.......

I was thinking that when someone dies and people start to talk and remember that person. The sentence 'I never knew that about....John' (or who ever) is said.

So here's my silly little list of things you might not know about me

1. I only have salt on eggs & mash
2. I don't eat chewing gum
3. I can only enjoy a cheesecake if I eat it with a fork (not a spoon)
4. I don't drink coffee
5. I drink around 15 cups of tea a day (that's an obvious one to people who know me)
6. I had size 4 feet before I had Jamie but now I am a size 5
7. I have been every size between a size 8-18
8. I hate marmite
9. I wipe from the front
10. I am neurotic about my hair
11. I have had eczema since I was a baby
12. I sleep on the left
13. I have a scar near my left eye where I had a sever plucking accident when I was a teenager
14. Favourite cake is carrot cake
15. My hands are really cold right now
16. Never owned a goldfish
17. I love cheese on toast
18. I don't like takeaways
19. I can't stand Mcdonalds (I call it Mc shit)
20. The only flavour milkshake I like is Vanilla
21. I got married when I was 22yrs old
22. I got my ears pierced when I was 6yrs old
23. I'm 5ft 1 and have been since I was 12
24. I love PIZZA but only margarita's
25. I smoked for 13yrs
26. Gave up biting my nails when I gave up smoking!!!
27. I pick and eat my boogies, not not snotty one's (and i'm not ashamed to admitt it)
28. I have a brother....I know!!!
29. I LOVE tea
30. I was bullied at secondary school
31. I LOVE Cadburys dairy milk chocolate, love it, love it
32. I can't stand full fat milk
33. I lost my virginity at 15yrs old (not proud of that!)
34. I shaved all my hair off and had a skin head for 3 years (hair dresser fucked up my hair)
35. Lee has put me off onion, can only eat it if its very finely chopped and there's not to much of it in anything
36. I have been a vegetarian since I was 12, but eat fish (I think they call that a demi-vegetarian) so I'm one of them.
37. Don't like spicy food
38. I LOVE icecream (Proper Italian icecream is my favourite)
39. Used to be a fitness & aerobics instructor
40. I have owned a smart car (loved it)
41. Can't drive any more
42. My birthday is in October
43. My dad died of a sudden heart attack when I was 26
44. I have never mowed a lawn or used a lawn mower
45. I am always hoping someone will make me a tea
46. I LOVE my sleep and lay ins
47. Longest distance I've ran in one go is 10km
48. I HATE anything pink
49. I had piano lessons when I was younger
50. I lived in Devon for 8yrs (hated it)
51. I have 2 scars on the inside of my mouth from putting the top of a baked bean can in to suck off the sauce
52. I HATE maggots. Some people are scared of spiders etc and freak out. Well I feel that way about maggots.
53. I like mint feast's (icecream lolly)
54. I got engaged at the top of the Iffel Tower
55. I'm the oldest child in our family (3 of us)
56. I think Simon Cowell is so so wrong!!!!!
57. I used to have weebles and a little swing for them when I was little (absolutely loved them)
58. I've had double pneumonia
59. I sleep with one pillow
60. I have lived in a pub
61. My maiden name was Sutton
62. I was born in Luton
63. The colours my hair have been: black, all shades of brown, blonde and electric blue
64. I don't read books, only fact ones when I need to.
65. I studied Graphic design at college
66. I've drawn naked people (life drawing class)
67. I have blue eyes
68. I wrote in my school book when I was about 8 that when I grew up I wanted to be an electrician
69. I only brush my teeth once a day
70. I have to have mayo with chips otherwise I can't/won't eat them
71. I only eat salad cream with fish fingers
72. I CAN NOT drink pissy tea
73. I'm scared of the dark
74. I don't watch any soaps (as in programmes! not the washing hand kind)
75. I'm allergic to 1 type of banana milkshake
76. Passed my driving test 3rd time
77. Can't and won't each anything slimey
78. Can't and don't drink alcohol any more
79. Don't like white chocolate
80. I don't like beans with any main meal, just on toast or in a jacket potato
81. I've ALWAYS wanted to be REALLY SUPER skinny
82. I had the same stats as Sam Fox when she was a page 3 model when I was 14
83. I can't stand 'the green balloon club' it makes me wanna vom
84. I have had all of my little lady waxed before
85. I first got drunk when I was 12
86. I don't eat ketchup
87. Put on 4 stone when I was pregnant
88. I text when I'm on the toilet
89. I hate my hair
90. I've never done a crossword
91. I NEVER share chocolate (seriously)
92. I have 2 tattoo's. One I like and One I hate
93. I don't own a pair of flip flops (donated by Louise)
94. I don't mind crisps, but I prefere not to eat them (donated by mum)
95. My sister is my best friend, she hopes :-) (donated by Louise)
96. I have 17 cousins and Lena is the bestest (donated by mum, adapted by me and my mum corrected by Lena)
97. My top 3 favourite swear words: Fuck (& all in the family of fuck. E.g fucker, fucking, fuckedy etc) Shit and Twat.
98. I've seen 'The one with Ross in the tanning booth' episode of friends at least 50 times and I still laugh every time (donated by Lee, adapted by me)
99. I used to call all children 'Aliens' (donated by Lena, yeah thanks for that one cous!!!)
100. My middle name is Emma. My sisters is Eleanor heeee he, sorry Louise just had to do it!
     

That will do for now. I'm sure there are some bits you wish I hadn't shared :-) but never mind.
My 100 is finished now :-)

It would be funny to think of people reminiscing or talking about me after I'm not here any more and saying some of those things. Like 'me having my little lady waxed'
But it's probably more likely to be 'oh do you remember when Jane wrote that stupid list on her blog? how random was that?'
Oh Well at least you all know a little bit more about me and that's never a bad thing!