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!

Drug update.....

List of drugs tried & tested so far

1.Keppra
2.Carbamazapine
3.Lamotrigine
4.Oxcarbazine
5.Topiramate
6.Phenytion
7.Clobazam

I am currently on 3,6 & 7

7 seems to be having the best impact on my seizures out of the ones I've tried so far or should I say 'at the moment'!!

My consultants plan is to try and get me on less drugs, but first she has to try and stabilise my seizures before she can pull me off any of them. She said the more drugs your on the more fatigue and tiredness you will suffer and just generally feel more 'rough' and struggle.

Clobazam is the drug that she is aiming to gain some stability with. It totally whacks you out (extreme tiredness & fatigue) for about 2 weeks when you first start it or when you go up a dose.
So am struggling a bit on this one. Initially it helped seizures loads, but now seems to be getting less helpful (fucker)

I've gone up one dose already since starting Clobazam, so watch this space.

Soooo lonely

I think anyone that hasn't got or had an illness can appreciate how fucking lonely it is. How you have to deal with daily struggles, tears, med side effects, how it all affects the people you love etc (and there is loads more) on your own, on a daily bases and how you are left to pretty much 'get on with it'.
I am struggling to take Jamie to school now on my own, because I feel it's unsafe for both of us. It's too far to walk, can't trike it, the buses aren't ideal times in the mornings and I haven't the confidence to go on the bus on my own with Jamie anyway (the 'just in case' factor).
Every now and again the 'old' Jane in me say's 'fuck it, just get on the bus or what ever, just do it' But every time I'm brave and try to do something I have a big hideous seizure that injures me and causes me deep distress.
Anyway I'm lucky I have my sister, she will do everything and anything to help me if she can and she has been doing school run for me and Jamie.
But that's ALL I have in my day now, drop Jamie at school and pick him up and I can't even do that job properly (on my own). But I don't care how bad things get that will always be my thing I do for Jamie (my job for Jamie) It is isolating for me and my boys having to deal with all this stuff, everyday.

I don't tell people what's going on with appointments and meds anymore. I have so many appointments, I just wanna go in, deal with it, deal with what's said or decided and get on with it. It's so much easier that way, coz I don't have to worry about anyone else! I can just be selfish and focus on me and have Lee there as my support.
I just want to have normal chit chat with people and not talk about it every time I meet up with someone, It fucking depresses me. I wanna feel more normal and chat and laugh about silly shit. I also hate seeing the sadness in people's faces when I tell them stuff, so i'd rather not.
I do feel a bit sorry for my sis though as on our coffee day I do off load on her a bit, but then we chat about everything and I wouldn't not say.
My mum said a classic last week that made me smile. I was talking to her about all the crap stuff that had happened in the week (weekly crap update) and she said (in a soft way) 'oh you pooooor cow' I think a lot of people probably think that. But it was just the sweet way my mum said it.

Anyway really fucking tired now. Normally in bed by 9pm!!!

Shit summer

This year without out a doubt has been the hardest time of my life so far.
Haven't been on my Blog, even though it's my 'Therapy' because everything has been too emotional, horrible and hard for me to even think about it.

One of the main reasons being my seizures, over the 6 months or so they have just gone down hill big time! As you all know I have partial seizures that affected my right side. Well they've changed from twitching in my arm & leg and my arm coming up to my face, head turning etc. To being unable to balance whilst having a seizure even when sitting down, gurgling, choking noises and dribbling, my whole body trying to twist right round. I am still fully aware of what's going on around me, which in a way makes it so much worse. Because I know what's happening but am powerless to do anything about it.

I had a bad fall when I had a seizure back in June now I think! I cut up my shoulder pretty badly and hurt all down my left side. As I fell i just thought 'oh shit' and then when I was laying on the floor before my seizure finished I was just thinking 'please no one come over to me' It was the worst experience of my life.......Well so I thought! (other bad seizure crap has happened) but don't wanna go into all that.
After that fall it really affected me, in the fact that I didn't want to go out because I would never know if it would be a bad seizure day! (I still don't) I was worried about my safety and more importantly Jamie's safety when we would go out. Even sat on the floor I can't balance I still fall and hurt myself. So it's now become un-safe for me to go on my trike as I would just fall off if I had a seizure. For weeks after I wouldn't engage in conversation with anyone other than family just 'in case'! I wouldn't go out on my own unless I really had to (taking Jamie to school) it has been hideous, lonely and scary.....and still is, oh and I still have all those feelings, but maybe not to that extent now.
I've shut myself away and have been trying to deal with the shit day by day. Because my med's still aren't controlling my seizures and they have become quite bad, I now have to tell people so that they don't totally freak if it happens in front of them. Having to explain to people what might happen has been a really hard thing to do as well, I don't wanna have to be explaining something to people that I am finding really hard and emotional to deal with. I hate feeling like I have to tell people and its not people I chose to tell, its people I HAVE to tell (e.g Jamie's school etc)
Anyway enough about all of my hideous seizure crap.

Now the Drugs...... The other reason for not being on my blog is the extreme tiredness from my drugs. At one point I was on 4 drugs at the same time, down to 3 now. I am still suffering from very bad tiredness (its a bit better), but thought I'm ready to get back on here now and do some ranting of my shit.
Oh and I'm on drug number 7 and still going......Consultant said I will have to live with my Epilepsy, but hopefully we can aim to get the 'bad' seizures under control, but that may not happen either. But said all we can do is keep trying.
She has arranged a 2nd opinion with an epilepsy consultant for me, as she is my neurologist that deals with epilepsy. So she thought the other consultant might have a bit more experience to help me a bit more, but I think it will just be a case of 'well which drugs do you wanna try me on now?'

So much has happened in the last 8 mnths (in terms of my illness). I usually see my consultant every 3-6 mnths depending on how my meds and seizures are and I've been seeing her once a mnth for the last 6 mnths now.

Feel super sad that my boys have to live with this, with me. But they are both really brave and I'm glad they are there. Thank fuck I have the love and support of all my family.

Anyway its all been extremely fucking shit for all of us and that's all I want to say about it all. So lets leave it at that.