Anxiety, Mindfulness and Me

This blog was written for the Living Well With Epilepsy Blog Relay, November 2017.

So I have been battling another one of my demons recently, anxiety... I have always been quite an anxious person, always worrying a lot about everything but it wasn't until I was diagnosed with epilepsy that it started to get out of control.  During the first few months of having epilepsy I would wake in the night, with my heart beating in my head in a real state.  At the time I put it down to the lamotrigine as after a few months these episodes stopped and I didn't really think anymore about it.

In the years since there have been moments where my anxiety has seemed to get worse, during my pregnancy with Benji when I was worrying about labour was one of those times but it was then that I learnt about mindfulness and really used it to take some control back over my thoughts and worries.

When I was planning going back to work I thought it would be ok Benji starting nursery, me starting work, Riley starting school and running my first half marathon all in the same month... but again my anxiety took hold.1

I started to wake in the nights again with these panic episodes and found it hard to control my mood when I was tired. My thoughts start to spiral out of control and could feel myself panic about every tiny thing. I knew it wasn't healthy and definately wasn't helping things. I also knew I was more likely to have a seizure and I really don't want this seizure free streak to come to an end... but at the same time I don't want to add another medication to my list of meds.

So I turned to mindfulness. I find that focusing on the breath when my thoughts get out of control helps centre me. And by doing a meditation before bed such as a body scan my sleep is so much improved. It's time consuming but it helps and I know I need to do more to feel more in control.

I have started trying to fit meditation into every day life more too, just taking more time to concentrate on the tasks we tend to do on autopilot. Like taking time to think about how a meal looks, smells, tastes, feels and sounds as I eat rather than gobbling it down with my mind wondering over other things.

I think mindfulness should be taught to everyone with epilepsy, everyone with a chronic condition in fact. The research behind it is really solid, this paper gives a really good overview of some of the benefits seen in mindfulness. It actually changes the way our minds and bodies work for the better. Yet there is next to no provision for it within our health care and I think that needs to change.

There is a lot of information out there on mindfulness and it has become a bit of a fad but honestly give it a chance, find a book that breaks it all down and find the right form of it for you. It might just changet your life. 

As I sit here early in the morning I can hear the door in the corridor creak, I can feel the cool morning air on my face and rather than letting my worries for the day consume me I feel calm and grounded in the precious present.

NEXT UP: Watch for Jewel's story on http://liveoutloud4epilepsy.org/ the full schedule of bloggers participating in the Epilepsy Blog Relay™ visit livingwellwithepilepsy.com.

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.

Medication in pregnancy ~ does the guilt ever go?

When you are pregnant you want to do everything you can to protect your unborn baby.  You watch what you eat and drink, giving up things you loved before just in case it impacts on the life you are growing inside you.  But for those of us who have no choice but to take medication during pregnancy it is a huge weight on our mind throughout those 9 months and beyond.

Pregnancy and the early days

That first scan is so scary, but then so is every scan after that, what if they find something, what if the drugs have affected the baby, I think it’s the only time in life where you want your child to be completely average and I felt blessed that both mine were.

Then they are born and the relief that both my babies we’re ok was huge.  The first few days with Benji were a worry, he didn’t poo straight away and the doctor was questioning whether his digestive tract had developed correctly.  We heard her making irate phone calls to the consultant and the whole time I was sat there thinking maybe this is because I took Keppra in pregnancy.  It turns out he is fine but the worry at the time was very real.

So once they are home I though the guilt would pass, we have two healthy children we could get on with life.

Small problems start to show

But then we noticed Riley’s eyes would sometimes roll outwards, to begin with I thought I was imagining it but by the time she was two others started to notice it too. It turns out she has a divergent squint, she controls it really well and I am so proud of how grown up she is when she goes to the hospital and has her eyes tested.  But in the back of my mind I question why does she have this problem, could it be the lamotrigine I took in pregnancy?  She may need surgery in the future, it’s not a problem that is likely to go away and I worry that other children will notice her eyes and bully her for it.

Then there are her little toes, they are slightly deformed, they are slightly high on her foot and the nails are small and impossible to cut. I have mentioned it to the doctor and we were told they may well bother her when she gets older and require a small surgery to correct them.  But a few weeks ago Riley asked me why her toes are funny, it was because Benji’s are normal so when I cut their nails together I can do his really quickly but with hers I have to get clippers out and try to pull the nail back to cut them and it hurts her.  She asked why her nails were so hard to cut when Benji’s toes were so much smaller and yet his nails were easy to cut…

Finally there is potty training, this has been a complete nightmare, the hardest part of parenting so far for us… we have tried everything.  We have used so many different reward charts, we have got her to clean up the mess, we have used a wobble watch to remind her to use the toilet, we have given her big drinks to try to stretch her bladder and still we have regular accidents.

Don’t get me wrong things are improving, we definitely have less accidents now than 18 months ago but we struggle to go more than 2-3 days without an accident and some days we will have loads.  The health visitors are all out of ideas, nursery are all out of ideas and for a child so bright and articulate it seems strange she can’t grasp a simple concept of using the toilet.

At first it was really hard seeing all her friends just getting it.   But it has gone on for so long now I have learnt to accept it but it is still hard when there are children so much younger than Riley who are successfully potty trained.

There is also so little support out there when you are struggling.  I had to break down in floods of tears to the health visitor to even see them.  We had a scan done and it showed her kidneys are normal but it would appear her bladder is small.  We don’t know why yet but we have finally got a referral to the paediatric urologist, it has taken a long time and a lot of heart ache to get there.  And now I wonder could it be the medication I took in pregnancy which is behind this problem.

Could it be the medication?

The truth is we will probably never know whether these problems are caused by the lamotrigine because while data is collected on major birth defects at birth, small problems like this are not recorded anywhere and without the large data sets you can never tell whether it’s just unlucky that she has these problems or whether it’s due to the drugs.

Of course these little problems wouldn’t have stopped me having a baby because I was taking epilepsy drugs, I wouldn’t change Riley for the world.  I suppose it’s more the guilt that is linked with them, I blame myself for Riley’s problems.  Because no one can tell me either way whether it’s the drugs I blame myself for the decisions I made, like to up my lamotrigine dose during pregnancy because my levels dropped.

It’s also a funny situation because I feel like because Riley and Benji were exposed to different drugs during my pregnancy and Benji doesn’t seem to have these problems that if I had taken the plunge and tried Keppra sooner Riley might not have these problems.  I chose not to try Keppra sooner because I was worried about it effecting my mood because of all the things I had read about it so I feel guilty for that.

What needs to change?

I suppose what I am trying to say is that more needs to be done to record the long term effects of medication on children exposed to it in uterus. Drug companies need to take more responsibility for their medications so women can have all the facts available to them.  I wouldn’t have chosen not to have children because of these small problems but now I feel guilty for every problem my children have, it would be good to know which are linked to the medications and which aren’t and just to receive better support and understanding from health professionals.

There is so much information on the risks of smoking and alcohol in pregnancy and at the end of the day there is no need for women to smoke and drink in pregnancy (and the risks seem pretty obvious) yet there is so much data on the risks.  But for medications that many women have no choice but to risk in pregnancy the data just isn’t being collected and that seems wrong somehow.

Mindfulness ~ my lifeline over the last six months

Mindfulness has received mixed press recently.  While lots of people praise its benefits it is also being labelled the latest craze and many companies are pushing to make money out of it.  It’s sad really when all the scientific research is pointing towards it being an effective way for us to treat conditions like anxiety and depression which up until now it has been all too easy just for doctors to prescribe pills to ‘solve’ these complex problems.  

Mindfulness takes work and dedication, at the end of the day it is changing the way we look at the world and  acknowledge our own thoughts.  But I have to say having spent the last six months using it to overcome my pregnancy anxiety, it really does work and I will be taking what I have learnt through mindful birthing forward into the rest of my life.

Foundations of Mindfulness

Beginner’s Mind – don’t let fear from past experiences take over new experiences

Non-judging – things don’t have to be good or bad they can just be

Patience – learning not to let things get to you by coming back to the breath

Non-striving – there is nothing to achieve in mindfulness, it’s all about learning to be more present

Self-reliance – learning to listen to ourselves

Acknowledgement – accepting things just are without trying to change them

Letting be – learning to accept situations as they are without trying to run away from them

Kindness – towards ourselves and towards others

The first thing to learn is how to use the breath as a tool to bring you back to the present moment.  Breathing is something we all take for granted, it keeps us alive, and yet it is something we carry with us all the time without even thinking and something we can use to focus our mind on.  Once you come to realise how amazing our breath is you understand how powerful it can be in reducing anxiety and depression.

Once you have got your head around the breath you can move onto a variety of both formal and informal mindfulness practices.  The idea of formal mindfulness practice is to take time out of your day to ‘formally’ carry out meditation.  These sorts of practices include:

• Body scan – where you really think about the feelings and sensations in your body
• Yoga – using the breath as part of a series of stretches and exercises
• Pain Practice – using Ice Cubes to simulate contractions and learning to use the breath to cope
• Walking meditation – concentrating on the rhythm of walking
• Loving – kindness meditation – sending loving thoughts to your baby, yourself and others

Informal medication is how mindfulness slowly takes over your life and makes you look at life completely differently.  It’s all about taking opportunities to focus on the here and now.  It might be just taking 2 minutes at work to really focus on your baby’s movements or when you feel pain or an itch.  It could just be taking the time to really concentrate when you are brushing your teeth or walking in the park rather than letting yourself get caught up in your thoughts and missing what is happening in the here and now.

Mindfulness somehow seems to address all the issues around birth.  Whether it be the straight forward how am I going to deal with the pain of labour or the more complex emotions of fear and anxiety from a previous traumatic pregnancy and labour.  To the even more complex emotions of losing a baby in the past – there seems to be a way for mindfulness to help and so I would recommend it to anyone – no matter the situation.

Mindfulness also is so important in our future roles as parents.  Parenthood is filled with challenges, from the pain and struggles of breast-feeding, sleepless nights, sick children, temper tantrums, potty training, the list is endless.  Being able to take a deep breath and let go of our anxieties and judgements allows us to view all these challenges in a more clear way and make better more balanced decisions.

Mindfulness also strengthens our relationships with our partners, how can it not, values like patience and non-judgement can only ever strengthen a relationship.  Becoming parents is hard, having a baby will never fill gaps in a relationship, it will only highlight them all the more and gives so many new opportunities for problems to raise their heads. Mindfulness teaches us to be kind and loving, to try to understand how the other person is feeling and to take a breath before we say something we later regret.  I believe mindfulness helps to fill gaps in our relationships and so I know I will make sure I continue to use it to help me to cope with the challenges of life.

Almost 38 weeks ~ our baby loves chocolate!

Wanted to post something to cheer myself up and hopefully make you guys all smile.

I have been feeling a bit sorry for myself the last few days.  I have managed to pick up Riley’ cold and so have been feeling grotty on top of feeling enormous – not a great combination! Also I have heard from a few of my friends that things haven’t gone so well for them in their pregnancies, labours and with their children.  It makes it feel like there are so many ways things can go wrong and bringing up happy, healthy children is really more luck than good decisions.

But amongst all this I have noticed that our baby loves chocolate! Not 100% sure this is a good thing but it makes me smile.  So when I sit down with a glass of water and my favourite choccy bar then give it 5 minutes and suddenly I can feel baby moving around and kicking lots.  Always puts a smile on my face and feel we have something in common!

37 weeks ~ the reality it could happen any time!

So yesterday I had a panic, I really don’t know what came over me as I have been feeling so in control but all of a sudden I just felt so anxious and out of my depth.  I haven’t been feeling quite right the last couple of days and I was sitting with Riley on the sofa and thought I had started having contractions… I guess it made me realise it could happen at any time now and I just don’t feel ready.  But do you ever feel ready?

I guess I have just been trying to keep such control over the process and all of a sudden the reality that labour is completely out of our control hit me.  It will happen when it happens and we’ll have to drop everything and just get on with it.  After having had my little panic and then doing some mindfulness I fell asleep and woke up in the night to realise it wasn't the start of labour and everything could carry on as normal… for now!

I think last night made me realise this isn't going to be easy and I need to work on my mindfulness more than ever now to keep some control over my anxiety and not let it get on top of me.   Let’s face it in a month the baby will be here and we will hopefully all be home getting used to life with a new little person in it.  The process that gets us there is out of my control so taking a deep breath and accepting things as they happen seems like a good way to live life right now!

Becoming a big sister!

Riley is well aware she's going to become a big sister in the next few weeks and she seems really excited.  She talks to my bump, kisses and cuddles it and tells everyone she's going to be a big sister soon.  She seems quite aware of what having a baby around entails, she breastfeeds her teddy and can change a nappy!  All in all she seems super excited which is fantastic.

But I am under no illusion that this is going to be an easy transition for her, even now there are little tell tell signs which let me know she needs our support even more at the moment.  Every time someone special leaves we have tears at the moment and asking for 'one more' kiss and cuddle.  But as I have said in previous posts all we can do is show her we love her and take each day as it comes.

I know she is going to be an amazing big sister.  Here's a picture of us on our last holiday as a little family of 3!

28 weeks ~ appointments and birth plans

So I'm 29 weeks pregnant and starting to think about my birthing plan.  It's a weird situation to be in because in my last pregnancy I didn't feel like I had any choices and so didn't see the point in writing a plan - I just went along with what the doctors wanted.

This time I feel like I have a voice, I feel like I have choices to make and most importantly I feel like I am being given all the information I need to make those decisions.

Over the last 2 weeks I have had quite a few appointments and the amazing thing is they have all been really positive and I really feel like I now have a pretty good idea of what I would like to happen during my labour.

Anaesthetist appointment

The first appointment I had was with the anaesthetist at Epsom hospital - all I can say is she was amazing.  Having looked through my notes she said she didn't blame me that I didn't want another epidural after what happened last time.  She also said that I coped so well with the pain last time she didn't feel I would need one this time anyway.

She also said that hopefully this baby won't get stuck like Riley did as second babies tend to get into the right position easier so hopefully I won't end up needing a forceps delivery.  Also I hope to be able to move around more this time so that will help the baby's position.

So the plan is that if I need to have a c section or forceps delivery this time they will just do a spinal - which is a smaller needle in a different part of my spine.

I also found out that if I had a seizure they wouldn't give me either an epidural or spinal as they are both seizure inducing, if I needed a c section due to seizures they would put me under general anaesthetic anyway.

Community midwife

I finally met my community midwife and she was lovely.  She really seemed to understand that a natural labour would be the best thing for me.  She said that there is now a consultant midwife at Epsom hospital so I am going to go and see her to write my birth plan rather than the reflections midwife at the other hospital who I really didn't find very helpful last time.

When I said I felt like I had failed because I had ended up co-sleeping with Riley in hospital she said no you didn't fail, we failed you... that meant a lot hearing that she understood.

I also had my anti D injection as I'm rhesus negative so that was another thing ticked off the list this week.

Epilepsy specialist at The National Neurology Hospital, London

We saw my epilepsy specialist and she was really pleased with how I am doing and feels that the Keppra is working. I've had no seizures for eight months and even the idea of driving again soon was brought up! I'm not going to get my hopes up and I think even if I am still seizure free in November I won't be rushing to get my licence back.  But who knows when the baby is sleeping better if I am still seizure free it will be amazing to be able to drive myself places in the evenings, I'd have a little bit of freedom back.

We discussed IVs during labour and she said she liked women with epilepsy to have one during labour but could understand why I didn't really want one after last time.  She has left it quite open for us to discuss it further with the epilepsy midwife and Epsom hospital.  She is also supportive of the fact from an epilepsy point of view I should be discharged as soon as possible and if not Rich needs to stay with me.

She also agreed that Clobazam probably wasn't a good option for me during labour as I didn't react well to it last time and my seizures seem better controlled this time anyway.

Epilepsy midwife at Royal Hampshire Hospital, Winchester

This was the most amazing appointment of them all.  She is an amazing woman who makes us feel empowered to make this pregnancy and labour what we want and not what the doctors want.

The main things we discussed were:
1. This issue of an IV - a recent study found a 1-2% chance of having a seizure during labour but failed to look at whether there were any causative factors for these seizures.  So with such a low risk and with my epilepsy well controlled she doesn't feel I need an IV.  I have never been in status and if I do have a seizure during labour I wouldn't need emergency medication unless it lasted longer than 5 minutes as the baby wouldn't be affected by a self resolving seizure.

2. She feels if everything goes well I should be discharged home as soon as possible and if we do need to stay for any reason Rich must be allowed to stay to ensure the baby is safe.

3. Eating and drinking  during labour - last time I wasn't allowed to drink for 12 hours due to them putting the epidural in - this time because I don't want an epidural I should be able to drink during labour.  I just remember being so thirsty last time, if I can avoid that it would be fantastic.

4. Hypnobirthing can trigger seizures... she also says it can make you feel less in control, something I really struggled with last time.  She was really positive about mindfulness though and so I think I am just going to continue to concentrate on mindfulness exercises to help me through labour - I'll talk more about this in another blog as it is something which is really helping me to feel more in control of everything.

Then she started asking me if I had thought about how I wanted the baby to be monitored during labour and also what I want to happen about delivering the placenta after the baby as these are also things I have a choice over. 

This is a strange thing for me to get my head around firstly because the period after delivering Riley was the worst part for me but also because last time I didn't get any of these choices.  So I'm going to go away and have a read up on my options.

It was just so good to be planning my labour as a positive experience where I can use my mindfulness training to deal with whatever happens and be treated like a 'normal' woman.

So I really feel like my birth plan is coming together.  I feel like we have so much support now from my specialists and midwifes in Epsom that hopefully the doctors will back down and realise I've though all this through and I'm not being irresponsible.

It may sound strange but I sort of feel that I need to win this battle not just to give me the best chance of having the birth I want but also to give women with epilepsy everywhere the confidence to stand up to doctors when they over medicalise things so that women are less likely to go through what I went through last time.

The best bit is the epilepsy midwife wants to write our story as a case study which would really help highlight everything which I feel I have had to fight so hard for but which I hope in future won't be such a struggle for women with epilepsy.

 

The pressure of being seizure free...

I have been totally seizure free for 6 months now which is the longest I have ever been seizure free for since I was diagnosed 10 years ago.  Now don't get me wrong I am really happy but part of me is terrified too...

The seed for this blog was planted by a friend of mine who has really inspired me to talk out about something which I find difficult to put into words and which I sometimes feel guilty for but here goes – I just hope this makes sense and that I don’t upset anyone.  

For many years I have felt in a difficult place, my seizures don’t happen, daily, weekly or even monthly but my seizures have never fully gone away, in fact at one stage I went over two years without a major seizure and then had one for no apparent reason.  I often find myself feeling bad that sometimes I get down about my epilepsy because so many people have it so much worse.

But talking to my friend made me realise something…  now don’t get me wrong I would never want to live with more regular seizures but in having seizures so irregularly sometimes I feel I can’t be completely honest about how I am feeling around people whose seizures are so much worse.  

I often feel bad posting on epilepsy forums about my problems because they often involve issues people whose epilepsy is so severe can only dream of facing.  When your seizures are under control you have to get on with your life – live it to the full or you are wasting that time but the epilepsy is never gone, it is always there in the background, always posing a risk. 

This weekend I mentioned this to my husband and he totally understood what I was saying.  He said it’s like if you have seizures all the time someone is constantly hitting you with a bat which hurts and stops you being able to get on with things.  But when your epilepsy is controlled it’s like you are being followed around by someone holding a bat who might hit you at any moment for no good reason – you can’t forget it’s there and you always have that worry with you.

He also told me about an experiment carried out in the 1960s where monkeys received electric foot shocks that were signalled by a preceding tone.  Monkeys were in pairs, with one in each pair able to press a lever to avoid the shocks.   The other monkey in the pair could not press the lever and so received all the foot shocks that were delivered.

The monkeys who had control over the lever quickly began to show signs of stress such as gastric ulcers and some even died.  The monkeys who received shocks but could not try to avoid them, remained healthy although I’m thinking probably weren't particularly happy!

They concluded that the shocks themselves were not severely stressful as the monkeys who had no control over the shocks showed little sign of stress; the critical factor was the stress associated with trying to avoid the shocks.  Having control was the stressful element.

In a way if we get our epilepsy under control with drugs and by making sure we look after ourselves it’s a bit like being the monkey pressing the lever to stop the shocks – we can avoid the horrible seizures but we have to make sure we take our medication every day, get enough sleep, eat healthily, don’t drink alcohol.  

The more we do to try and stop the seizures the more pressure we put on ourselves not to mess up.  Then because we don’t have seizures any more we take on more responsibility, we drive, have children, take a job which relies on us being seizure free… and then it’s even more important we don’t slip up – miss our medication, have a bad night’s sleep, get stressed over things, because the consequences of having even just a single seizure are so much greater now…

It’s something I have always felt bad talking about because I feel I should just feel lucky to have such control over my seizures that I can do so much with my life, but suddenly I realised I'm not alone in feeling like this and by not speaking out about it I am bottling up stress and anxiety which isn't healthy.  

Maybe just maybe there are other people out there who feel the same and by writing this blog I might reach out to you and make you know it’s OK to feel anxious and down sometimes even when your seizures are well controlled – because we still have to live with the unpredictability of epilepsy just in a different way.

Half way there ~ the ups and downs of epilepsy and pregnancy!

So we had our 20 week scan yesterday and baby is doing really well.  It was actually done by a consultant who while extremely quick seemed very competent so whilst we didn’t get much of a chance to really see baby, I feel like the baby has been checked by the best person possible.

 

The other good thing about this is that it now means we don’t need to see any medical professionals for a while which I am really happy about.  I can now get on with enjoying my pregnancy which is going really well at the moment and the epilepsy midwife I have been in contact with is making me feel really positive about the whole thing.

I have also been convulsive seizure free for 16 months and completely seizure free for 6 months – this is something I really didn’t think possible and while I am very aware that my epilepsy is a type which is difficult to fully control and so may rear its ugly head any minute I just want to enjoy it while it lasts.

But unfortunately we are really struggling to keep my pregnancy non-medicalised and I’m finding it very frustrating.  We had a hospital appointment a couple of weeks ago with the consultant team at the hospital I am giving birth at.  I was meant to see the consultant but because they were running so late I ended up seeing a registrar who knew absolutely nothing about epilepsy.

We clashed over a number of issues... 

Firstly – scans – they wanted to do an extra scan at 34weeks, the epilepsy midwife has told me a detailed scan at 20 weeks by a consultant is enough and I want to stick with that.  They weren’t happy and told me I wasn’t thinking about the baby and then brought up the fact I had refused the Downs Syndrome Test and told me the babies neck was normal thickness which was a good sign –but we didn’t want to know and now you have told us – what if it hadn’t have been normal would they have told us then???

Secondly – an IV – they want me to have an IV in and I don’t want one, their answer to that was – keep seeing the councillor – like she’ll be able to convince me to do what they want!  I don’t want to have it put in so they can put lots of other things through it to cover every possible eventuality.  If there is a medical need during labour then they can put one in then.

Thirdly – discharge – so apparently I’m not going to meet their early discharge criteria even if I have a normal pregnancy and straight forward labour so they will want me to stay in – when I asked why they replied because you are at a high risk of having a seizure after – my argument was that I don’t need to be in hospital if I have a seizure as they have always self-resolved and I will have much more support at home from Rich, family and friends and will be much less stressed at home.  I can self-discharge so although I don’t want to do that I guess it may be the only way to ensure I am in the best place for me and baby.

Fourthly – seeing the consultant team again – I didn’t want to see them again unless anything changes, they want to see me regularly, in the end we decided I would go back at 34 weeks after I had seen my specialist in London.  They told me 4 times ‘you MUST tell us if anything changes with your epilepsy’ making me feel like I was being irresponsible but all I am doing is following the advice from the only epilepsy midwife in the country and I am planning to travel down to Winchester to see her again before this appointment as well just so I feel confident in my decisions. 

But on a positive note I could feel the stress that in the past I know has triggered my focal seizures and I didn't have one - so maybe the Keppra really is helping.

To be honest if I do have a seizure they won’t be the first people I call because they won’t be much help, apparently they can’t even take my Keppra levels so I’ll have to go to London for them anyway, I’ll be calling my team in London first and the epilepsy midwife second then I’ll let the obstetric consultants know.

 

I hate that they are making me feel like I am being irresponsible by not wanting intervention, especially when I am doing what my epilepsy midwife and specialist have suggested.  I am happy to be monitored like any other woman and if they have any concerns at any point I am happy to increase the amount of monitoring and intervention.  But at the moment my epilepsy is the best controlled it has ever been and my pregnancy is going well – why can’t I just enjoy that and feel blessed to be in this position rather than thinking about all the horrible things that could go wrong?

Mindful birthing

Having had such a traumatic experience of labour and being a new mum last time I wanted to find an alternative way to cope this time.  I have been interested in mindfulness and its health benefits for a while now and dabbled a bit in it but never seriously looked into it.  Then last week I was lying in bed worrying about what was going to happen in labour this time when suddenly I realised – perhaps now was the time to take a serious look at mindfulness and I am so glad I did.

I am only on the sixth chapter but already I can relate so much to it.  The idea of going into every situation with a “beginners mind” is particularly helpful, the idea that just because it happened a certain way last time doesn't mean it will happen that way again so concentrate on what is happening right now, experience each moment as it happens, without judgement. 

It may sound a bit silly but because I had to have a really heavy epidural for them to do a forceps delivery last time; it meant I didn't actually feel giving birth and that is just one thing I really feel I missed.  I felt so disconnected from the whole experience that I just didn't really experience any of my labour.  I want that to be different this time.  It may not go to plan but I want to be present in the moment this time round, I think this quote sums it up best:

“Mindfulness doesn't give you the birth experience you want, but it gives you a way to fall in love with the birth experience you get.”

So even though I may have to have an epidural or an IV I want to be more present in the moment and more aware of what is going on in each moment so that I feel in control.

I would definitely recommend Mindful Birthing to any expectant mum and I will keep you updated on how I use it throughout my pregnancy, labour and beyond.

Potty training is... hard work!

I have been told by so many people - it only took us 3 days and he just got it and it will be easy when they are ready... well I don't believe that for a minute!

We have had our second attempt at potty training over the last couple of weeks and yes it's definitely going better than last time but it is most definitely not easy and any parent who says otherwise is either very very lucky or lying!

It hasn't come easily to Riley, I can tell when she needs the potty so there have been a number of days where we haven't had any accidents but she doesn't consistently tell us when she needs it, so if she is with someone else it doesn't always go so well or if I take my eye off the ball for a while.

There are a few things that all parents should be told about potty training...

1. Wait until your child can understand what's happening and you can explain what they are meant to do.  It is also easier if they can definitely understand two phase instructions.

2. Don't do potty training in the winter - use the weather to your advantage - warm days mean less clothes to get wet and the chance to get washing done and dried quicker than your child manages to get it wet again.

3. If your child hates being in the house like Riley does spending a full week in the house while you do 'Potty training' isn't going to be a great incentive for it to actually work.  Two days in and Riley started to connect wearing big girl pants with being imprisoned in the house!  This is where summer comes in again, my advice is go to the park, take a picnic, lay out the picnic blanket and potty and spend the day there.  They no longer feel imprisoned and accidents don't matter.

4. Bribery is ok!  We are now at the point where we have told Riley if she tells us she needs the potty and does a wee or poo on the potty she gets some chocolate (thus needing to understand a two level command).  Everyone says use stickers but you know what sometimes stickers just aren't incentive enough!

5. Pull ups are just the nappy companies way of getting those last few pennies out of parents - they can be really confusing to a child as they feel like nappies so they definitely gave Riley mixed messages, she just didn't get it.  Now there are times when accidents just aren't an option like when Riley rides my friends pony but we found 'Bambino Mio training pants', they are cotton with a waterproof layer in the middle so the child thinks they are still wearing pants but you have a back up 'just in case'  and they are washable so reusable.

6. Don't worry if it doesn't work out first time, if it all becomes too much for your child or you then just go back to nappies and try again in a few weeks or months.

But my biggest message to you is potty training is hard for your child and hard for you.  It's the first time you have to take a huge developmental step with absolutely no advice and as with many parenting topics there is a lot of pressure to succeed and make it look easy, but lets be honest it's not.  But just remember you don't see many teenagers still in nappies so it does happen it just takes time and practice and lots of praise and don't let it take over your life - still remember to have fun with your child.

I thought I'd leave you with this picture of Riley eating roasted marshmallows off a stick - what a great way to celebrate after a week of potty training pressure :)

Epilepsy Midwife appointment ~ emotional rollercoaster!

I want to post this today as tomorrow we have our appointment with the reflections midwife at our hospital so it seems important that I get this up beforehand.

On our journeys with epilepsy we meet so many professionals all of who have some impact upon the way we view our own condition.  Not all those meetings will be positive and that's why it's so important to reflect on each contact.

In February I was lucky enough to get an appointment with the only specialist epilepsy midwife in the country!  I met here through some of the campaigning I have done with Epilepsy Action.  All I can say is she is amazing - her knowledge is incredible and her calm yet competent approach has given us some of the confidence we so greatly need.  The appointment has changed my expectations of pregnancy and labour and helped me feel empowered to do the best for me and baby.

Here's a brief summary of what we talked about:

Keppra and birth defects

Although it's still early days as far as the statistics for birth defects with Keppra are concerned the numbers are getting to be statistically significant and it's looking like it could be a safer drug than Lamotrigine.  Barely increasing the risk above base line.  Also there is no one birth defect which is showing as being linked to it - another thing which helped put our mind at rest.

Could it have been post traumatic stress?

So a major part of our appointment was reflecting on what happened during labour last time. Rich and me both ended up in tears and it was really hard talking about what happened.  We'd always felt our experience of labour hadn't been great - but hearing it from someone so specialist brought with it mixed feelings - relief that our fears aren't unjustified and hope that things could be different this time around.  Looking back I went through quite a lot and it's not surprising by the time I got home I was exhausted and traumatised.  Those first few months were so tough - I found it so hard to bond - could it have been partly post traumatic stress, hearing that gives me hope things could be better this time round.

Different this time around

I think that is the most important thing I am taking from the appointment - things could be so different this time around - I know now I want things to be as natural as possible.  No IV, no clobazam, no epidural.  As the midwife said I did most of the work at home on my own with a TENS machine last time.  I want as few hospital appointments as possible - I'm not going to be stupid about it but at the same time I don't want my pregnancy to become medical.  I want to go home as soon after having Riley as possible and if not I want Rich there with me.  All this is supported by the midwife and she's going to write it all down so I really feel like this could happen.

Monitoring drug levels

I have also learnt that there is mixed research behind monitoring medication blood levels.  That's not to say it's not worth it but they are not sure whether just because Keppra levels drop in the blood stream they necessarily drop in the brain - so if I don't have any big seizures why put my med dose up?  It's good to know if they are dropping especially if they go out of therapeutic range completely but has definitely opened up my mind to the pros and cons of it.

So all I can say is I left that appointment feeling empowered - like I do have a choice.  Things may well change, I might start having more seizures or something completely non-epilepsy related might go wrong but at least I know that it might be possible to have a natural labour and that for me is a good base line to work to.

Thank you to this amazing lady for helping turn this experience around for me - I went into the appointment so frightened and came out feeling empowered with a plan.

How do you explain epilepsy to a 2 year old?

I can’t believe that just a few months ago when Riley turned 2 we were worried she wasn't able to say much.  Now she talks and talks and can say pretty much anything she wants, I think of all the developmental milestones her speech has to me been the most amazing.  It’s just so nice to be able to walk down the road and have a conversation about what we can see and what we are going to do.

But now she is able to understand so much it has got me thinking maybe I need to start looking at how I can explain to her about my epilepsy and what she needs to do if I have a seizure.  It’s such a difficult thing to judge, so far I have never had a seizure while she has been there so if she saw me have a seizure it could really scare her.  Knowing what to do could really help but I don’t want to scare her by telling her too much or something she doesn't really understand.

Is 2 just too young? How do I go about explaining something so complicated to her in a simple way?  These are all the questions I have started to ask myself.  My mum bought me a lovely little book for Christmas which I think is where I am going to start.  It is called ‘Epilepsy Book for Kids’ by Layla Reid who is seven and whose mum has epilepsy.

This then got me thinking – everyone’s epilepsy is so different and everyone’s situation is different what would be lovely would be a personalised book for Riley, about my epilepsy – in fact maybe this is something I could actually look into – could I develop personalised books for children whose parents have epilepsy…

So I am going to do some research into it and maybe in the future I can take it further.  In the meantime if you have any advice about explaining epilepsy to young children I’d love to hear it – send me an email to claircaxton@hotmail.com

Adoption rejection

So I told you before we were going to try to adopt, well we are rather gutted as we were rejected based on Riley’s age.  Apparently they like a big age gap between a natural child and adopted child.  Also there second reason was that there are very few children in Surrey who need to be adopted.

We are obviously gutted but it just frustrates me, surely adoption is something which should be a national scheme.  Surely it makes sense that in somewhere like where we live there are more families looking for children than children looking for families, it’s an affluent area… but elsewhere in more deprived areas I am sure it is the other way round.  It seems crazy to me.

As for them wanting what’s best for Riley I don’t really buy it… I know people with children Riley’s age who are fostering. Surely having a different child living with you every few months is far more ‘disruptive’ than adopting a permanent brother or sister.

They also told us it was to do with statistics showing that adopting a sibling close in age leads to adoptions breaking down in teenage years… I would like to think that we will bring our child/children up in a stable and loving enough environment that a comment from Riley that her brother or sister isn’t a real brother or sister because they are adopted wouldn’t bring our family to its knees.  Let’s face it, I think you have to cope with more in life than that.   We’d talk it out and set the record straight.

But anyway so it is our council won’t move forward with our application.  Everyone we speak to thinks it’s ridiculous but there is really nothing more we can do for now.  You can’t argue with them.