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Posted by Red in SUDEP Awareness Day on 2017-10-23 17:59:34
Today is SUDEP Awareness Day. SUDEP is Sudden Unexplained Death in Epilepsy, and 1 in 1000 people with epilepsy will die from this. People who have uncontrolled seizures, who experience a lot of seizures, or who have tonic clonic seizures are believed to be at higher risk (1 in 130). There is no way of predicting when SUDEP will happen, it just does. The cause is unknown, but it's believed to be in part when seizures affect your breathing our heartbeat. SUDEP terrifies me, and is just one reason I am so so desperate for the NHS to actually listen to me and diagnose me. Having on average 10-20 (but sometimes 60+) seizures a day, I need medication to lower that rate, because I don't want to die. I don't want Lyle to wake up next to...

Posted by LynnW in About the girls on 2017-10-19 20:31:15
Hen cam has been offline again for a few days now. I hope everything is alright.

Posted by LynnW in A weekend of A&E and negligence on 2017-10-14 23:12:59
Oh wow, Red..how horrible a time you have been having! I hope you can find someone to help you.

Posted by Kateb in A weekend of A&E and negligence on 2017-10-10 15:50:29
Oh Red I'm so sorry the NHS is letting you down so badly. I come across so many staff who really do care and try to help, but there are so many more who just can't be bothered and seem to override and overrule anything remotely good that is done. Don't let them put your mom off - tell her to make them give her everything in writing. Ask for a copy of their complaints procedure, a copy of your medical records, and keep pushing for answers. I hope you get some help and relief soon. xx

Posted by chief chicken in A weekend of A&E and negligence on 2017-10-10 15:18:30
Bless you Red, you poor girl - what a horrible time you had of it. I'm glad Helen's on the case - hope she gives 'em hell! Any record of the nice Doc who spoke to you about a neurologist? I hope you're feeling a little better now...

Posted by Red in A weekend of A&E and negligence on 2017-10-10 12:18:35
So just after I was getting to grips with my seizures and feeling like we were managing them much better (and had reduced them to about a dozen a day), autumn hit and the grey days have bright them back as bad as ever I'm right back up to having 25-30+ seizures a day. On Saturday I had a really seizure heavy day. I was out of it for several hours, having near back to back seizures and not coming around or being coherent in between. In the early evening, after a hellish day, we called 111 to ask what to do, as we know our GP won't help. The guy from 111 wanted us to go to A&E and said he would send out an ambulance - when we said we could make our own way there so we weren't wasting resources, he said we had to get there by ambulance...

Posted by Kateb in Carrots and Bananas, what's your rant for the day? on 2017-10-03 23:02:30
Haven't had chance to ask yet - always a tricky one as never know what the manager's view is! It's frowned on by some!

Posted by chief chicken in Carrots and Bananas, what's your rant for the day? on 2017-10-03 15:56:34
Poor you...can't you do flexi time and go home later and come in later?

Posted by Kateb in Carrots and Bananas, what's your rant for the day? on 2017-10-02 21:05:10
30 minutes to get to work at 7am ... 75 minutes to do the return journey at 4pm. Hate having to work in Birmingham.

Posted by Kateb in My July Garden on 2017-10-02 21:01:56
A birthday present from Mother Nature!!

Posted by Kateb in Happy Birthday Lynn on 2017-10-02 21:00:01
Happy birthday Lynn! I hope it's been a wonderful day. xx

Posted by chief chicken in The best thing that has happened to you today. on 2017-09-30 16:14:13
Lawks, that looks sore!! Hope it feels better than it looks - poor you!

Posted by LynnW in My July Garden on 2017-09-30 06:20:29
I didn't think this Summer would EVER come to an end..I love the smell of the first few rains too,NN..I had almost forgotten what it smelled like.

Posted by LynnW in Well it made me laugh on 2017-09-30 06:15:00
Makes me want to take up drinking.

Posted by LynnW in Happy Birthday Lynn on 2017-09-30 06:11:54
Thanks Red, I had a wonderful birthday.

Posted by ollie in UK in Well it made me laugh on 2017-09-29 22:44:15
Now that makes me feel very sad, so now I need a glass of wine!

Posted by Red in The best thing that has happened to you today. on 2017-09-29 20:41:02
Ah thank you guys Life has taken an upwards turn, and we're fighting hard to keep things good! Yes CC I have a blog aimed at MH / 'spoonie' stuff...basically covering everything to do with my illnesses and life, and also trying (- usually failing!) at helping others/offering advice :P Got a cracking wallop to my head yesterday in a seizure tumble...least it'll be gone by my birthday, I'm just getting it out the way????

Posted by Red in Happy Birthday Lynn on 2017-09-29 20:32:49
Happy birthday Lynn, I hope you've had a really awesome day!!

Posted by chief chicken in Well it made me laugh on 2017-09-29 18:17:32
How very true...

Posted by LynnW in Happy Birthday Lynn on 2017-09-29 18:17:22
Thank you for the Birthday wishes, NN & CC

Posted by chief chicken in Happy Birthday Lynn on 2017-09-29 18:15:19
Yes, have a lovely day, won't you? xxxxxxxxxxxxxxxxxx

Posted by nanny north in My July Garden on 2017-09-29 11:57:10
Yay so please to hear at long last you got some relief from the drought Lynn. Bet the air smelt really sweet and fresh with that first shower. I love that smell after all the heat. I will be back soon for a chat with pictures of course xxx

Posted by nanny north in Carrots and Bananas, what's your rant for the day? on 2017-09-29 11:52:24
two jobs tidy garden or sort out airing cupboard ............. Its raining so got to do cupboard Ugh still will be pleased when its done its just the having it to do that irks me !!!!

Posted by nanny north in Well it made me laugh on 2017-09-29 11:49:09
Todays giggle is

Posted by nanny north in Well it made me laugh on 2017-09-29 11:48:19
Be lovely to see some photos of them when you get time Lynn xxxx Hope Dash isnt as fussy and picky as mine are. Luckily the Koi are really huge now so more than happy to polish off any leftovers from them.

Posted by nanny north in Happy Birthday Lynn on 2017-09-29 11:41:31
Happy Birthday Lynn I hope you have a really magical and wonderful day xxx

Posted by Kateb in My July Garden on 2017-09-21 21:03:22
At last!!!

Posted by Red in Carrots and Bananas, what's your rant for the day? on 2017-09-21 19:56:48
rants: having to deal with morons like this... Watch the video / read the blog here This exact scenario is how Toller broke four bones in her leg, and why she is now a three legged dog. I am absolutely fuming there is no way to report dog owners like this, and it's responsible dog owners (and their dogs) who end up paying the price :'(

Posted by chief chicken in My July Garden on 2017-09-19 14:59:36
Brilliant - you can have a bath now! :D

Posted by LynnW in My July Garden on 2017-09-18 20:16:07
We got our rain finally yesterday and for several days this week too..WOOO HOOO!! No more 90 to 100 degree days either..I'm so glad to see Fall get here, it's been a rough Summer.

Posted by LynnW in Well it made me laugh on 2017-09-18 20:04:09
NN, I love that one!!! Dash and Chloe are doing great..I'll have to see if I can find a new picture of them. Dash is way bigger than Chloe now..and heavier too..the kid eats like a pig.

Posted by chief chicken in My July Garden on 2017-09-17 14:49:00
Absolutely; I leave our tap running for a while so it gets really cold (no,we aren't on a meter!).

Posted by Kateb in Well it made me laugh on 2017-09-16 21:20:53
LOL!! Excellent!!

Posted by Kateb in My July Garden on 2017-09-16 21:19:46
I love drinking really cold water - tap / cooler water just isn't icy enough!

Posted by Kateb in The best thing that has happened to you today. on 2017-09-16 21:17:44
What a wonderful post Red, so glad to read how happy you are! It's an old phrase but life is what we make it, and despite not having much you're doing great! Lovely view too! xx

Posted by Kateb in Our Ben on 2017-09-16 21:12:13
Isn't nature wonderful! We are lucky in the UK that the majority of our insects are pretty safe compared to other countries!

Posted by nanny north in Our Ben on 2017-09-16 19:29:48
Thats such a shame about your special wasps Kate. We had a huge looking wasp on our budlia bush this year. at first we thought it was a hornet Jay and I took pictures and googled it and discovered it was a hornet mimic hoverfly

Posted by chief chicken in Well it made me laugh on 2017-09-16 19:23:24

Posted by chief chicken in The best thing that has happened to you today. on 2017-09-16 19:22:00
Fabulous, Red...are you sharing all this with people who have similar problems? It must be such a beacon of hope for them. You're brave, clever and funny - keep writing about this and getting it out there. I'm so glad your life is on the up at last.

Posted by nanny north in Well it made me laugh on 2017-09-16 19:06:42
Ha ha

Posted by nanny north in Well it made me laugh on 2017-09-16 19:03:17
I love that Lynn Our Mickey is just the same. I am sure he is trying to work out how to get the packet open. How is Dash and Chloe I would love to see a picture of them I bet Dash has grown xxx

Posted by nanny north in Crafty things on 2017-09-16 18:59:52
Thank you all for your kindness. G/N has made a couple up just the board no log for indoor use if any one is interested xx

Posted by nanny north in My July Garden on 2017-09-16 18:57:09
Glad the nettles took CC but you might be cursing getting them if you ever want to dig up the roots. One plant almost broke my back trying to get all the roots up when we did the fruiting area. Got a bit more orange coming in that Pumpkin Lynn so am hoping for the best I do love a bit of pumpkin pie and we dont seemed to have the canned pulp over here. I bet the well water is super cold when you pump it up Lynn. My Gran used to have a well and I used to love a glass of it straight from the pump, It almost froze your teeth and had its own special fresh taste and smell.

Posted by nanny north in The best thing that has happened to you today. on 2017-09-16 18:48:19
Awwe that is so fantastic Red and I am so mega happy for you both. Ive been thinking of you and this is the very best news I could have wished for. Hope you can post again real soon xxxxxx

Posted by Red in The best thing that has happened to you today. on 2017-09-16 10:34:10
My best: So within the last few weeks, me and Lyle have been rocking life! That sounds weird, but for 18 months I couldn't go anywhere. I didn't leave the village, I couldn't travel, I couldn't even go in shops. If I tried, I would have back-to-back seizures. But we found ways to manage my seizures ourselves (because y'know the NHS isn't going to help!); CBD oil has taken my seizures down from 30 a day to 15, polarized lenses mean I am able to go on buses / trains and into shops - I still have seizures, but they're manageable and don't leave me messed up for hours. A wide brimmed hat is also hugely helpful. If I need to sit or lie down whilst out to recover, I will. It's only been the past month we've been able to have a life, and...