Wednesday, 27 May 2015

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.

Tuesday, 19 May 2015

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?

Wednesday, 29 April 2015

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.

Thursday, 23 April 2015

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 :)

Wednesday, 8 April 2015

The difference between adequate care and exceptional care

So yesterday we saw the reflections midwife at our local hospital and I have to say I left pretty disappointed.  I think the problem is having seen Kim the epilepsy midwife we had just set our expectations too high.

So I guess I need to start by reflecting on what went wrong last time and that can be broken down into four key parts:
  1.  I ended up going into hospital at 9cm dilated – my waters hadn’t broken so there was still the opportunity to put an epidural and after over an hour of trying they finally got it in. I then didn’t deliver for another 12 hours because the epidural mixed with taking clobazam slowed everything down.  When I finally did deliver Riley was dragged out with forceps because we had both become distressed.
  2. Rich was forgotten just as things were getting really stressful – he got told to wait in a side room while I was taken off to theatre – he wasn’t told anything.   He didn’t know what was happening to me, he thought I had died.
  3. After delivering Riley they forgot to administer pain relief and I was in huge amounts of pain and they then did internal examinations on me.  Of the whole labour for me this was the most traumatic part, I had given birth, it had taken over 24 hours but I didn’t get to hold or even see Riley for what seemed to me to be hours, instead I was in immense pain and having people poke and prod me.
  4.  I had to stay in hospital because I was on IV antibiotics and during that time at night when Rich had to leave Riley was placed in the cot with me to feed for hours on end because she wouldn’t stop crying.  The neurology team had dropped my medication levels straight down from 650mg to 450mg overnight (I have since found out I should have been weaned off them) and I hadn’t slept for 3 days – the risk of me having a seizure was high and I was alone in bed with a newborn baby…
So the first thing the reflections midwife did was say she wanted to talk to me on my own – looking back I should have refused from the beginning but she said that was how things worked there and I didn’t want to set off on the wrong foot.

We talked through what happened last time and I kept saying, it was hard for Rich too, highlighting that he had been left not knowing what was going on (similar to what was happening again right now!) and she kept saying she’d talk to him after we’d run through everything.  I also kept saying that I couldn’t really remember the details because of the clobazam making everything a bit muddled up and I definitely couldn’t remember time scales and it would probably be best to check with Rich about the details. 

Towards the end I was close to tears, when I mentioned how hard the first few months were and whereas with Kim it felt OK to cry – this time I felt like I just needed to pull myself together and it was at that point I knew this woman was a means to getting things down in writing so it could be different this time, I wasn’t going to get anything deeper out of it.

When I was finally able to go and get Rich he was understandably upset and there wasn’t really much more to say.  The thing is it’s not that she did anything wrong – the whole way through she agreed that everything that happened shouldn’t have happened and things needed to be different this time around and we agreed we’d write a clear care plan which at the end of the day from a practical point of view is all I needed it’s just we had hoped for a little more.

As my blogs title says I guess it’s just the difference between acceptable healthcare and exceptional healthcare.  In London they’d always included Rich in my care – always looked at the whole picture and Kim well she was beyond amazing – talking to us both, giving us so much time, empowering us together. 

We are lucky to have my consultant and Kim involved in my care and at the end of the day making the biggest decisions – and that’s what I need to hang onto.  If it wasn’t for the appointment we had with Kim I think I would be feeling a lot more worried but as it is I know what I want and I just need to make sure that’s communicated to the local hospital.

Monday, 6 April 2015

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.

Wednesday, 1 April 2015

Riley’s proud to announce she’s going to be a big sister!

Yes, that’s right, and that’s the reason for rather a lack of posting in recent months on here.  I am now 13 weeks and 2 days pregnant, which makes the baby due on 5th October 2015.  Yesterday we had our first scan and I am so relieved that everything is looking good so far and it really makes the whole thing seem more real.

Sitting in the waiting room I had that same mix of excitement that we finally get to meet the baby and also fear that something could be wrong with the baby but all is ok and it is just so amazing to see baby on the screen.

So the first 13 weeks… well I knew I was pregnant literally a few days after I conceived – I felt sick and so tired, at least I hoped I was pregnant.  I had put my Keppra up after having a few focal seizures in November and so the alternative was that it was a side effect of the medication in which case we’d be looking at alternatives at the next appointment because I couldn’t live like that!

The next 2 weeks before I could actually do a pregnancy test dragged by but when those words came up on the test I was so relieved and excited.  Last pregnancy I had had a seizure by that point so things were going well.  I felt awful and was being sick regularly.

In my next blog I am going to talk about the appointment I had with the epilepsy midwife just after I found out I was definitely pregnant.  I can tell you it was a turning point for me – it made me realise what happened during my last pregnancy and labour didn’t have to happen this time – this time things could be different and that although I knew it would take some fighting for I wanted this pregnancy and labour to be more natural.

So I have now also had my booking appointment which went really well.  It was with a student midwife (overseen by a senior midwife) but she really seemed to understand how I felt, that I felt anxious about what happened last time and wanted things to be less medical this time.  They felt things hadn’t gone as well as they could and we are now seeing the birth reflections midwife next week so I will talk more about that after we have had our appointment with her.

They seemed to support me in having as few appointments as possible.  As I am under consultant lead care I will need to see the obstetrician once but they are going to make sure it is the consultant and not a registrar and then as long as everything continues to go well I can just see the community midwife at my GP like any other women would.

I don’t like to tempt fate but I have been a year free of convulsive seizures.  Now that can happen for me, I have been over two years before without one and then had one for no reason but it’s got to be a good thing.  I have actually been completely seizure free since November – I’m not expecting that to last but somehow I feel Keppra is working better than the Lamotrigine was… it’s early days and we’ll just have to see how things go.  I have learnt a long time ago not to get my hopes up too much – but I am going to be quietly confident – otherwise what’s the point?

So anyway the sickness is now easing and I can finally eat again which in turn is giving me more energy and I feel like I can get back to life again and all it brings which includes this blog.  So watch this space as I’m going to be blogging about becoming a mum again as well as being a mum already so there’s going to be lots to talk about :) exciting times!