Tuesday 25 August 2015

Injection time ~ and a chance to build a few life skills!

I had been thinking a lot about the best way to give Riley her MMR and preschool boosters as to me giving a baby two injections at once seems quite mean but at least they don’t remember it after.  But take a three year old who is just developing her own strong opinions on how things in her life should work and it seems to me like a recipe for disaster.  Added to that the fact that I know vaccinations can make you feel a bit rough I decided it would be better to have them done separately.
Then I realised I could time Riley’s MMR with my whooping cough vaccine, it seemed like the perfect situation.  We discussed what would happen at home when I had made the appointment and that we would both be getting injections in a few weeks which might hurt a little bit at the time but would make sure we didn’t get ill.  Riley seemed happy with this and after asking a few more questions went back to playing happily.
So yesterday was the day and it was pouring with rain, so after a 45 minute walk to the doctors I was soaked and feeling a bit fed up (it’s days like yesterday when I really miss being able to drive).  As we entered the nurses room the nurse said, ‘did you get my message?’ I said ‘no’ and she explained most people get the two vaccinations done together as it can be quite traumatic for the child.  Riley can’t have her pre-school booster for another few months so the nurse suggested we waited.
I explained we had talked about what was going to happen and I wanted her to have her MMR now and pre-school next year (as in a couple of months we would be a bit busy with a new baby) and Riley then said ‘Mummy’s going to have her whooping cough injection first and then I am going to have my injection, I’m a big girl, I’m three’.  I think the nurse was quite surprised that Riley was so clued up on what was about to happen and yet not making a fuss at all.
Riley sat on my lap while I had my injection and then snuggled into me for hers.  She then turned to the nurse and said ‘that didn’t hurt and that she didn’t want a plaster because mummy didn’t have one’ and then she chose a sticker with a dinosaur on and explained it looked like Dub (her imaginary dinosaur) and skipped out of the room saying a cheery ‘thank you, bye’.  The nurse smiled and said if only they were all that easy!  Riley then walked home skipping in all the puddles as she went.
We’ve always tried to be open and honest with Riley about everything, explaining things to her in as simple a way as possible but without hiding things from her.  I think sometimes people don’t give young children enough credit for what they can deal with and maybe we shelter them too much.  It’s all about giving them the tools and support to be able to deal with what might happen in life – life’s not perfect and does have good and bad bits and part of our role as parents is to equip our children to deal with this and make sure they know they are loved and cared for no matter what happens.

For us my epilepsy means we have no choice but to talk about some difficult situations.  Things like injections are a good exercise for doing this too and I am so proud of how brave and grown up Riley was yesterday. 

Saturday 22 August 2015

34 weeks ~ birth plan's in place

I cannot thank Kim the epilepsy midwife enough for all she has done to get us to this point.  It has been her support which has given us the confidence to stand our ground and push for what we want.  We are now finally at a point where we have a clear plan which is agreed by both the consultant midwife and obstetric consultant at the hospital.


We wanted to be in the birthing unit by due to the size of the rooms we have agreed it would probably be better to be up on the ward but they are going to move the bed and medical equipment to the side of the room and put mats and a birth ball out.  My labour will be managed by the midwife unless anything goes wrong.  I am going to have intermittent monitoring of the baby so I don't have to be strapped to equipment.  No IV - something we have thought long and hard about but due to me never having been in status it seems like an unnecessary intervention.

Pain relief

Mindfulness and moving around using different positions as well as a TENS machine which I found fantastic last time.  Then gas and air as needed. If I need any intervention such as forceps or a c section I will have a spinal instead.


We're planning to be discharged reasonably quickly and they have said we can have a private room so that Rich can stay with me, so it's not the end of the world if I have to be in for one night.

It's just been nice to have it acknowledged by both the consultant midwife and the consultant that what happened last time was pretty traumatic for both Rich and me.  The fact they understand that I know my condition the best and are listening to what I want is refreshing and helping me feel more confident and less frightened about this labour.

As far as I am concerned, I am still seizure free and well.  There are no concerns at the moment with more or baby and baby has their head down and seems to be getting into the right position.  So all is looking positive.

Don't get me wrong, I know a lot can change in the next 6 weeks, but all we can do is prepare as best we can and go with things as they happen.

Tuesday 11 August 2015

Epilepsy & Me ~ BBC Three

Last night BBC Three showed a fantastic documentary as part of their ‘Defying the Label’ season.

The documentary looked at what it was like to live as young person with epilepsy.  It particularly addressed the hidden nature of epilepsy.  Something which I think can be difficult for us to come to terms with but also those around us.

Amy, Jack, Olivia - Epilepsy and Me

What happens when people can’t see your disability? It’s hidden and can strike at any time, without warning – when you’re walking down the street, in a classroom, at a party or on a date.

The programme looked at four young people with epilepsy and covered a wide range of topics in a short time.

It was also filmed mainly at Young Epilepsy, a place which I know very well from working there for two years and so it brought back a lot of memories of that time of my life too.

Loss of independence

One of the biggest things for me was how closely supervised these young people are.  How can you grow up and lead an independent life when you can never be left alone?

I feel blessed my family have never been overprotective of me.  Even when my seizures were new and much more regular they still allowed me to go off to university.  They must have worried about me, but they never let that show and I am forever thankful to them for that.  I think sometimes we don’t give the people around us the benefit they so much deserve.

I also think we should encourage family and friends to speak out more about their own experiences of the person’s epilepsy.  So many of the problems for people with epilepsy is being limited from doing things because people don’t think it’s safe or don’t know how to reduce the risks. How can we ever change this if the amazing people who support us don’t feel they have a way to talk about how they allow the person they love so much to live life to the full.

Big decisions

The programme also looked at 14-year-old Thomas who was having tests to see if his epilepsy was due to a newly discovered brain tumour.  After many tests it appeared that the tumour was the most probable cause of his seizures – he now has to decide whether to go for the brain surgery which has a 70% chance of curing his epilepsy but risks leaving him with speech and memory problems or to live with his seizures.  

These are big decisions for people so young to face and part of me feels lucky that surgery has never been an option for me – could I make a decision that big?

Stress, anxiety and excitement as triggers

One of the people I related to most was 24 year old Amy, she obviously had no idea when she had had a seizure, the way she was when she came round from her seizures rung true for me, that being confused but not sure why.

She was desperate to live an independent life and was looking for a long term placement, she found The Meath in Godalming and set her heart on it.  Her seizures then got worse so her supervision increased… somehow I could relate to her, doctors put her increased seizures down to her medications but I’m not so sure, I think often the emotional triggers of seizures are overlooked because we can’t fully understand them.  But I know my focal seizures are triggered by stress, anxiety, excitement, it’s a hard thing to accept because all those feelings are part of life, we need to feel them but what do we do if by feeling these intense emotions we end up triggering a seizure?


The only area I felt the programme didn't do justice too was the issue of driving.  And that is a biggy for so many people with epilepsy.

21 year old Olivia hadn't had a seizure for four years and wanted to learn to drive.  I really felt for her as it seemed like a lot of the people around her weren't supportive of her learning to drive. 

They repeatedly said you needed to be seizure free for three years before you could learn to drive and I think they needed to be clearer about his as the general rule is one year seizure free.  I don’t know whether it was her family who had told her 3 years or apparently there are rare cases where due to being on controlled medication you can’t drive but it was a little misleading and I think will lead members of the public to question people with epilepsy driving after only a year, something we really don’t need.

I really felt for Olivia because it seemed like her family didn't have much faith in her abilities.  It made me feel so blessed to have always had my family fighting for my independence, be it carrying on with the activities I loved so much, horse riding, skiing and swimming to getting married and having a baby.  

It’s a scary thing letting a person you care about so much take risks, part of you wants to keep the safe and as a parent now I can understand that all the more.  But for my family it's always been a case of how can we do this but with the least risk, be it wearing a helmet and body protector riding or getting an alarm when I had our baby.  I can’t thank my family enough for their attitude towards my epilepsy, they are amazing.

If you are looking for information on driving rules Epilepsy Action has some great information here.

You can also watch the programme on BBC iplayer here until 10th September 2015.  Definitely well worth a watch - inspirational young people showing us how to live life to the full with epilepsy.

Thursday 6 August 2015

31 weeks ~ not long to go now!

So less than two months until my due date and things are coming together.  So just wanted to give a little bit of an update.

Community Midwife Appointment

This week I had another appointment with the community midwife.  Again she was lovely and very understanding.  I had decided that I was going to ask if there was any chance of me having the baby in the midwife lead birthing unit at Epsom Hospital... if you don't ask you don't get! I was all ready for her to say no when to my surprise she said that was where she was thinking would be the best place for us!  It's early days as she can't grant us this but we should be seeing the consultant midwife soon who will be able to grant us this and then it's just a matter of running it past the doctors... ok so maybe not so easy but the fact is it's not been ruled out! Yay! Fingers crossed nothing goes wrong between now and when baby arrives.

I am however measuring quite big and so need to have another scan to check the baby isn't too big.  I am fairly sure it is all fluid (especially as my placenta was so big last time) and also the baby is lying right in the middle of my tummy.  But you never know until you scan, but hopefully it's not going to be a huge baby!  I think we're going to take Riley along to the scan which I think she will love :)

Now I am really working on my Mindfulness and trying to practice that as much as I can so that I am prepared for labour as best I can.  I am also finding it useful in all areas of my life so it's definitely something I would recommend to anyone.

Getting ready for baby!

We have bought a new buggy, a Phil and Teds Navigator 2 which has a dead break built into it.  The problem was that I wouldn't have been able to attach a buggy board to my Quinny because of the breaks so that is now up for sale - if you are interested drop me an email as would really like it to go to someone with epilepsy if possible.

We have also ordered a Moses basket this time - I think it will be worth it as I can then have the baby next to me in bed whereas last time I had to get up to pick the baby up out of the cot.  It might be a waste of money but if it gives us any chance of some sleep I'll pay it!

We've also started decorating the babies room, we have bought a matching curtain, blanket and lamp shade set which has made the room seem more like a nursery and less like a spare dumping room!   Our lovely friend has also given us a lovely throw for the sofa so it is really starting to feel like a baby's room.

Riley's chosen the babies first clothes so all that is really left to do is to get all the old clothes down from the loft and wash them.

Riley's growing up

I can't believe how grown up Riley is becoming.  She is going to be doing an extra couple of half days at pre-school from September.  I am really making the most of the time I am spending with her at the moment as I know it's not going to be as easy when the baby arrives.  I am really looking forward to being on Mat leave so that I can spend a bit more time with her. 

She's now learnt how to use my phone now and can call my mum or Rich if I have a seizure - I feel like we have got to a point now where if I had a seizure when Riley was around she'd be able to cope with it and know what to do.  I find that amazing, that at only three she is able to take on so much responsibility.  She is amazing and I feel so lucky to have such an amazing little girl.