Friday, 1 January 2016

Hello 2016 and the running shoes are back on!

Tomorrow Benji will be three months old, he's sleeping pretty well (giving me a good 4 hour stretch most nights followed by 3 hours) so what better time to start running again than New Years day!


Although saying that I don't want it to seem like this is a New Years resolution that will fall by the way side in a few days or weeks.  Far from it, running is something which has always been important to me, at school it was my way of coping with the stress of life at that time. I always wanted to run the London Marathon and was working towards that goal when I was diagnosed with epilepsy.

In fact it was while running that I had my first few seizures which really knocked my confidence at the time, made me fear running, but now while it makes getting back to running a little daunting it's also a big challenge which would prove my epilepsy was controlled once and for all.

Before getting pregnant with Benji I had started running again and it was going really well.  An added benefit of running was that it seemed to counteract the negative effects that Keppra was having on my mood, another reason I am so keen to get back to running again.

So all in all the idea of getting my running shoes back on today was a really positive step and it felt really good to be out running again, I feel my mood lifted already after just one run.  I'm not going to lie, it was tough and I know I have lost a lot of fitness but hopefully in 14 weeks I'll have built up to running 10k, that's where I was at when I was diagnosed with epilepsy 10 years ago.

After that I plan to start doing some park runs, working up to running the London parks half marathon next October and then the 2017 London Marathon - achieving an ambition I had long before being diagnosed with epilepsy but which has become all the more important as the years have passed.

And I'll be running the London Marathon to raise money for Epilepsy Action.  I don't even have to think about it, they have given me so much support over the last 10 years, without them I wouldn't be in the position I am now.  When I was first diagnosed it was at an Epilepsy Action event where an accredited volunteer (you know who you are) stood up and told his story, suddenly I saw a way in which I could turn this awful situation into something positive, into a way to help others.  Becoming an accredited volunteer turned my life around at the time, it gave me a purpose.

Epilepsy Action has helped empower me to become more knowledgeable about my condition than most of the health professionals I come into contact with.  They gave me the confidence to push for better care and the wonderful team I now have in London.  Probable most importantly they introduced me to Kim, the epilepsy midwife who helped give us the confidence to try for a second child after such a traumatic first birth, who empowered us to take control of my second pregnancy and made it such a positive experience.

I want to do something to make sure that others like me get similar support and facing the huge challenge of running the London Marathon just makes perfect sense.  Writing this post sets it in stone and hopefully if all goes well in just over a years time I'll be achieving a huge life goal while also raising money to help others with epilepsy gain the support they deserve.

So here's the reason I am running - for the two beautiful children we have been blessed with and the hope that others with epilepsy have the same support to start a family if that's what they want.

Wednesday, 30 December 2015

Benji's first Christmas and the end of 2015

Benji's first Christmas turned out to be pretty great.  Riley really got Christmas this year and it was just so magical to watch her face light up with all the magic of Christmas.  We are starting to build our own family traditions, visiting the Christmas lights, Olympia and making church and the religious side of Christmas which is so important to me fun.

So here are a few Christmas photos, which sum up the excitement of the end of what has been a very eventful year with the arrival of Benji who really does make our little family complete.

















 





 

Wednesday, 16 December 2015

Epilepsy and Pregnancy makes The Sunday Mail

Taking medication during pregnancy is always worrying but for some of us we have no choice which is why it is so important we have all the facts so we can make informed decisions.

I feel lucky that I was put on the safer drugs that carry the lowest risks in pregnancy and as a concequence it seems I have 2 healthy children.

But Epilim has been found to carry much greater risks both with birth defects and neurodevelopment  problems in children so why has it taken 40 years for this information to come out especially as ot was known when the drug was first licenced.

Now don't get me wrong I don't think Epilim should be band in women as I have friends who nothing else works for who don't want children. I don't think they should have to suffer with seizures and having a family is a person choice it's not what everyone wants so it shouldn't be presumed everyone wants kids.

But what is important isgirls and women are not put on Epilim as a first line drug and also the risk to a baby is made clear and effective contraception is given.

It's crucial women with epilepsy are given all the information and nothing is hidden from them so they can make truly informed decisions. That's why it's so good to see it in the papers - just hope all the truth comes out now about all the drugs.

If you want more information about the drug you are on then you can contact the UK epilepsy pregnancy register. It's also crucial to register with them if you are pregnant to make sure we have the best data on birth defects and how these drugs effect our children. Find out more here:

www.epilepsyandpregnancy.co.uk

Sunday, 13 December 2015

Riley loves the water ~ and now she can really swim!

So proud of Riley - this term she swam 5 metres indepently (actually she can manage a width which is 7 metres). She just loves the water and next term will get to play with flippers and snorkels. We love aquatots :) Benji starts in January and because my seizures seem pretty controlled I'm going to take him. Very exciting.

Monday, 30 November 2015

A birthday blog! A year seizure free!

Today I am 31, nothing special just another year older...  but today also marks 1 year completely seizure free. I still can't get my head around it as it was only 2 years ago that I came to terms with the fact my focal seizures may never be controlled. I can’t even remember the exact date of my last seizure just that it was in November last year.

So today marks the day I could technically drive again, not that I will because I still don't feel confident that it's controlled. Part of me thinks maybe it's because I was pregnant. Plus even though Benji sleeps better than Riley I still don't feel it's enough sleep and so don't feel safe to drive just yet.

In a few months when Benji is in his own room I will consider driving again but it's scary - I haven't driven in 6 years since my epilepsy was properly diagnosed as focal epilepsy. To just be handed your licence back brings mixed emotions - joy of course that I can have a bit more freedom but also fear of being able to drive and also losing that freedom again.

A lot to get my head round! But the main thing is I am now a year seizure free, the keppra looks like it's working, it's my birthday and the most amazing thing happened this morning. Riley woke up and said 'Happy Birthday Mummy' - she just remembered :) one happy mummy - the best present ever!

Thursday, 22 October 2015

Sleep - the big issue!

Today a miracle happened, to many it may not seem much but to me it was a miracle - Benji was lying on the bed watching me put away the washing happily babbling away and then the next minute he was asleep! Then I realised it wasn't the first time, I didn't realise babies could do that... settle themselves, Riley never did... so it took me a good few minutes to decide how to use this time, do I shower, tidy the house, I just never had this with Riley!
It's funny as I had just been reading a great article on sleep in babies and a comment underneath said:
"I don't understand why parents have such problems with getting their children to sleep through the night - my two did from a few weeks old - it's all about a good routine"
Well I thought, I dare you to have a third child...
Sleep... I was a bit obsessed with it before having kids, but now at least it seems everyone is talking about it not just me!
I think for many of us with epilepsy sleep is so important, and I know I feel more at risk of seizures after a bad night. The thing with sleep is while it is something we have some control over, for example, chosing what time to go to bed and having good 'sleep hygiene' as the professionals put it... There is also a lot we don't have control over like whether out bodies and minds will actually allow us to drift off and whether the neighbours are planning to turn their music up to top volume... so no wonder it's such a hot topic in the epilepsy world and why I have always obsessed over it.
When we had Riley we got no sleep I mean I was literally adding up the minutes between her waking to get to a total of 2-3 hours a night. We tried everything and I mean everything - white noise, singing seahorse toys, lullabies, dummies, the list was endless. We had done everything by the book, starting a bedtime routine from day one and she just would not sleep. By 6 months we were desperate so we did controlled crying - Google it... I dare you!
Controlled crying is highly controversial. We had friends who had done it and their children seemed fine and we really didn't have much choice with Riley, we'd tried everything and I was going back to work soon and a seizure was a real risk. Well we used the super nanny technique and the first night she screamed for 2 and a half hours and I cried my eyes out. But the next day she woke up happy and was in such a good mood. By day 3 she was able to self settle herself in just a few minutes and it changed our lives finally I was getting a decent stretch of sleep just waking to give her a night feed.
Now aged 3 she sleeps through the night consistently and has never got out of her bed but she has very much been trained to sleep, she needs her routine and a quiet dark room to get to sleep which makes holidays a little tricky but we get round it by chosing holiday cottages rather than hotels.
Now Benji seems like a saint in comparison although if he were our first I think we'd still be exhausted - as I said before he can just drop off to sleep sometimes which is a new experience for me.
He just struggles to settle at night to begin with and doesn't always settle after his night feeds and quite often wants to suckle on our fingers (he won't take a dummy). Once he is asleep he'll sleep for about 4 hours between feeds which gives me a decent stretch of sleep. I don't know how I'd cope with a 3 year old as well with any less sleep so I am so grateful he sleeps better. Now we just need to work on him self soothing to sleep at night so hopefully we don't have to go through controlled crying again!

Thursday, 15 October 2015

Our first few weeks ~ settling in

Sorry I haven't posted for a while, it's been a crazy few weeks of adjustment to having two little people to care for. Can't believe he's 6 weeks old tomorrow! Here's a little bit about our first few weeks as a family of four.

Baby Blues

So last time I really struggled with low mood and looking back it was probably either post natal depression or post traumatic stress.

We had an excellent midwife visit the first day, she seemed to know more about epilepsy than anyone else I had spoken to at Epsom. She asked about my keppra dose and whether it had dropped and said it could rise a little now and because keppra could effect mood it could make the baby blues worse. It was something I hadn't even considered but just acknowledging it made me feel less worried.

I've had some teary moments and some down times especially when I am tired and feeding hurts. It's not easy bringing up two kids. I feel like caring for a baby this time round is easier but added to the mix is making sure Riley still gets the time and attention she deserves.

I will write a separate post about this soon as it's something I feel needs to be spoken more about.

Feeding

So this time round feeding has been a real challenge. Luckily we have some great breastfeeding clinics near us who have helped. Initially he just wouldn't latch on at all and I was so worried I had no way to feed him. But the midwife showed me how to hand express and feed him out of a little cup - he was able to lap it up like a cat.

The first couple of weeks he slept so much, completely different to Riley! I was so worried it was the keppra. I emailed the epilepsy midwife she suggested taking my meds just after feeding him so that hopefully when the levels peak (an hour or so after) he won't need a feed. This seemed to help. She also said they could take levels in my breastmilk but as by 3 weeks he seemed a bit more awake, was waking for feeds and was finally back to his birth weight (having lost nearly 11%) I decided we probably didn't need to.

Now I am struggling with sore chapped nipples. It hurts so much it makes me cry sometimes. The breastfeeding councilor helped adjust how I put him on so I am hoping that will help with the soreness. She also said breastmilk is the best thing to help them heel. So we will see if it improves.

All I can say is it is hard and every baby is different, just because you breastfed last time doesn't mean it'll be easier second time! But I hope the benefits make it all worth while.

Sleeping

Well don't want to say too much as don't want to jinx it but he's a pretty good sleeper. He usually goes between 2-3 hours between feeds and sleeps in his moses basket. So I'm getting 5-6 hours a night which isn't bad. I'm still tired as it's broken and let's face it I could do with more especially as my meds make me tired but it will come and I can't complain as could be a lot worse.

Epilepsy

Incredibly I still haven't had a seizure, not a focal or a tonic clonic, so that makes it 1 year pretty much. It's the longest I have ever been without a seizure and can't quite believe it. I'm not about to go out and get my driving license as I need more time to feel confident. It's a strange thing being seizure free after living with something for 10 year, a third of my life. It's hard to explain, part of me is over the moon and the other part is scared to accept it in case it gets taken away like it has so many times before.

Smiles

And so it started happening at about 3 weeks - proper big cheesy grins. Now he'll smile right at you and it just makes it all worth if. All the tough bits are made up for by that one cheesy grin!

I'll leave you with some pictures of our first few weeks (including some cheesy grins!).