Moose here - again. Following on from my epilepsy thread.

[moosemama]

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

[moosemama]

Couthy, you need complex carbs, basically wholegrains, as they won't be converted to sugar as easily in the body. Wholemeal toast with a scrape of peanut butter, potatoes only in jackets, brown rice, wholemeal hot-cross-buns? Malt loaf is a good one as well, v low fat and great for b vits - much better than fruit loaf and more filling with much smaller portions.

A huge bowl of porridge with fruit in might help a well. Make the porridge with water and if you want it extra tasty add a finely chopped or grated apple and half a tsp of cinnamon - then put a splash of milk on when it's ready - low cal and it tastes like apple pie.

I am having a really strange weekend. Been trying to rest up as I have a horrible week next week. Dh is away for two long days, I have my neuro appointment, ds1's IEP and a meeting re SATs at the school.

Had a glass of red wine and some cocodamol both last night and the night before and slept really well, so no more night time episodes. They definitely seem linked to lack of sleep and exhaustion in general. The more nights of decent sleep and not too much daytime activity and stress the fewer I seem to have.

Dh is downstairs as I type, watching the dvd with ds1. We thought we weren't going to be able to get him to watch it, as he's been a nightmare all weekend and flatly refused to watch it before his friends, but dh insisted, so fingers crossed it's going ok.

I am sitting on my bed, still in my pjs, packing ds2's case for his outward bound trip next weekend. It's very strange. I literally worried myself sick about ds1 going, even had a thread about it on here, but now he's been and loved it and because ds2 doesn't have the same difficulties I am remarkably calm and unruffled about him going. I need to go through the activity list with him, as the SENCO wants me to give them a list of anything he feels he might not be able to do due to his hypermobility as well as those things he'd like to do but might need extra help with. I'd completely forgotten she'd asked for it, so have to send it in tomorrow.

Anyway, am off to the Sports Direct website to order him some thermals (which he says he won't wear ) having seen the weather report for this week.

Sorry you are both having difficult weekends. I feel really guilty, because, ds1's mental state aside, I have had quite a relaxed and restful one.

Hope today is better for you both. x

[moosemama]

Link for Couthy on how to manage carb cravings.

[MerryCouthyMows]

I'm in bits here. They've done a 'reconsideration' on my DLA award and stopped my DLA totally.

Apparently it was a letter from my GP that stopped it.

He told them I wasn't having fits or blackouts - well why the FUCK is he prescribing 1500mg/day Gabapentin for fucking fits then? Why the FUCK would he tick & sign a form for my buss pass SAYING that I will not get a driving license due to fits or blackouts?!

It makes NO fucking sense.

Apparently I have NO mobility issues...yet on Friday another GP at the surgery told me that I DO have mobility issues, and he is sending me for X-rays and blood tests, and has prescribed naproxen to help with the pain.

How can they pay me ONE months money & my back pay and THEN say that I'm not entitled to DLA?!

There are around 15 things on this letter that they SAY I can do without help that I CAN'T do without help.

I'm in bits, I just can't cope any more.

It's a daily thought for me that maybe my DC's would be better off in care, because obviously I'm fucking imagining the pain I'm in, obviously I'm imagining the seizures that even my Gynae consultant saw.

I can't fucking fight any more. There's nothing left to fight with FFS.

I can't go on like this with no help.

[moosemama]

OMG Couthy!

My younger sister is going through a very similar thing with her GP and DLA at the moment, so I know how awful it is.

I can email her and ask about how she got her appeal started if you like.

It sounds like a breakdown in communication at the GP's end - can you call the GP you spoke to on Friday and find out who completed the form?

Can't remember if you have a SureStart centre near you - but if you do, my niece has had a lot of support from them re fighting benefit cock-ups - so that might be worth a try.

Let me know if you want me to contact my sister for advice for you - she used to work supporting people in similar situations herself so has a lot of knowledge.

[moosemama]

Leonie, I told you there was nothing to worry about. Glad he was able to put your mind at rest.

I have had the wind well and truly taken out of my sails today. After a whole week of no episodes and starting to feel better, I stupidly stayed up until gone midnight after resting all weekend and ended up having a massive cluster of them between 5.20 and 6.00 am this morning. They were short lived, not as severe as some of my worst ones and didn't get as far as the blinking stage, but they just kept coming. Every time I thought it was over it started up again. Three medium sized ones back to back then loads of really quick short ones.

I discovered that I seriously cannot stand to be touched when it's happening. Dh, bless him, kept trying to put a reassuring hand on my back/shoulder etc and I couldn't stand it at all. I woke him as soon as I woke and felt the dread building, so he was awake for the first three, but then I thought it was over and he went back to sleep and I didn't bother disturbing him for the endless mini ones. I concentrated on trying to be 'mindful' and remain calm while it was happening, so tried to breathe steadily - which is not easy when you are yawning really deeply incessantly without being able to stop and your eyes are literally pouring. By doing that I was able to ascertain that I am in no way panicking or stressed, what is happening is beyond my control and I can't stop it - whatever it is.

As a result I am zombie girl again today. Have gone from feeling almost normal by the end of last week to being totally exhausted, unable to think straight, feeling a bit like I am just outside of my body, rather than actually in it and in control, iyswim and am left with residual burning hand and foot on the left side.

Am really p'd off about it, as I was daft enough to think I may have turned a corner.

Neuro appointment is tomorrow, but I really don't know what to expect. Different/locum neuro, so haven't a clue what he's like or if he'll even listen - if I am brave enough to speak up and explain what life has been like for me for the past few months. Dh is coming along, but he's hopeless at medical appointments, so not much help really.

[moosemama]

I have everything from the past fortnight written down in a diary I bought to keep records of episodes. Other than that I would have to go back through our threads and find where I've mentioned having episodes and I know I haven't always been on and recorded them on here, so it's a bit hit and miss really.

I reckon I'm going to get the usual "We'll keep an eye on you - see you in 6 months." line - if anything.

Ds was clear that he didn't think I was panicking at all as well and he has seen me have panick attacks in the past - a very long time ago - so he knows the difference. Hoping an independent witness might help.

[MerryCouthyMows]

Don't feel like that, I'm glad things are wworking out for you.

[MerryCouthyMows]

What happened was was that my GP sent them a letter on 16/01/13, obviously telling them I don't have fits (yet he's prescribing me AED's personally...) or mobility issues.

Then the DLA medical officer came out to see me on 21/01/13. She obviously told them I DO have epilepsy & mobility issues.

Then DLA made a decision in mid-February, based on all thus evidence, and decided to award me LR mobility & MR care from 09/10/12 - 08/10/14.

Then they paid me my back pay & first payment on 5th March.

Then on 13/03/13, they posted out a reconsideration letter telling he that they had decided that I wasn't entitled to DLA because I have no fits and no mobility issues...

I received that letter today, so I rang them. They told me that they had reconsidered my award based on my GP's letter WHICH THEY HAD BEFORE THEY MADE THEIR FUCKING DECISION IN THE FIRST PLACE!!!

They have lodged for a reconsideration based on my phone call, and they are going to send me out a copy of my file.

I can't wait to see what it says...

[MerryCouthyMows]

For once, my useless Mother actually had a point - if the GP doesn't think I'm having fits, blackouts or seizures of any kind, then surely it's illegal for him to be prescribing me Gabapentin for the last year, for a disability he doesn't think I have...

And surely if I don't have any mobility issues causing me pain, another GP in the surgery shouldn't be prescribing me naproxen for painkillers...

So either I DO have epilepsy and mobility issues, OR I don't, and the GP's are prescribing me medications I shouldn't be taking...

She's usually useless, but for once, she actually has a good point!!

[MerryCouthyMows]

Oh FFS with MN eating my posts.

[MerryCouthyMows]

I'm just one person and I think I'm broken.

If I'm imagining the seizures, if I'm imagining the pain I'm feeling, if I'm imagining my mobility issues, then I MUST have done sort of MH issues, which surely should be being addressed?!

I have other people that have witnessed me having seizures - my DC's, my Ex, my friends, the staff in my local Tesco, the Gynae consultant and the nurses that looked after me when the multiple seizure thing happened.

If all these people have seen it, how the hell can I be imagining it?!

I'm starting to think I'm Alice in fucking Wonderland, because nothing seems to make sense any more!

If I aren't having seizures at all, then why am I addling my brain and taking so much Gabapentin? Why would the GP prescribe that if he didn't think I was having fits?!

Nothing makes fucking sense in my life any more. Feels like I'm in the effing Labyrinth or something.

[MerryCouthyMows]

D'ya know what? I'm going to ring my GP's surgery, and ask them WHY I'm being prescribed Gabapentin as an anti-seizure medication if the prescribing GP doesn't believe I'm having seizures.

And I'm going to ask if I should stop taking them. Because obviously if I'm not having seizures, then I don't need anti-seizure medication...

Lets see what they say!

[MerryCouthyMows]

They've booked me a telephone appointment with the prescribing GP for this evening.

The receptionist said that I was asking a 'very pertinent question'...