Tuesday, 23 December 2014

Would you like to share your pregnancy story and your experiences of being a parent with epilepsy?

Read the pregnancy diaries onlineEpilepsy Action is building on the Pregnancy Diaries which Riley and me were involved in.  They’d love to hear from new people.

It was an amazing project for me to be involved in.  Nicole who put the whole thing together is so approachable and it really helped me to feel that I was helping making a difference to other women.  I felt very alone during my pregnancy and I didn’t want anyone else to feel like that if I could help it.

You can read the pregnancy diaries here.

So now it’s your chance to get involved.  Drop Nicole an email to find out more campaigns@epilepsy.org.uk


And watch this space, I’ll keep everyone updated as the project moves forward in 2015.

Saturday, 20 December 2014

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.

Wednesday, 19 November 2014

Managing Mood ~ getting back to running

I wanted to write a little bit about mood.  It’s such a difficult thing to judge which I guess is one reason why mental health problems are so difficult to cope with.

As far as my epilepsy is concerned sometimes my brain cuts out, I fall to the floor turn blue and have convulsions… that’s not normal… that needs treating medically.  But when it comes to our mood, what is normal?  We all have our down days and sometimes the day’s role together to form weeks.  But when do we need to get help… and what should that help be?

The thing with epilepsy is it impacts on our mood because it impacts on how we live our lives; we live with an increased level of risk and a certain amount of judgement from others.  Even seizures can be confused for low mood and vice versa.

Since stopping Lamotrigine (which is a mood stabiliser) I have become much more aware of the ups and downs of my mood.  At first it scared me, was I depressed, was this normal?  But after a chat with my sister I am coming to realise that ups and downs in mood aren’t bad, they help make life more worth living.

And because to me this is new it is a chance for me to think about how I can manage my mood, make me feel more in control of it and so get the best of both worlds… the ability to feel the highs and lows of life but at the same time not letting the lows get on top of me.

So I have started running again, it’s how I got through my teenage years and it is doing wonders for me now.  I try to get out three times a week for about 30 minutes and started by doing ‘Couch to 5k’ which I would definitely recommend.  


You wouldn’t believe how much better it makes me feel, how positive I feel not just straight after the run but the next day or so too.  I feel like it’s what gives me control over my mood.  It’s a weird situation because I first started having seizures while I was running so it holds a bit of fear too.  

I’m also looking into mindfulness training too; I think that would really help me as anxiety is something I can struggle with.  I am not saying techniques like exercise and mindfulness can cure all mental health problems and I don’t want this to seem like I am criticising anyone.  It’s just as I weaned off the Lamotrigine and started Keppra I have become much more aware of my mood and this is my way of responding to that.  

Me with my tetrathlon team when I was at school and used to do soooo much exercise before I started having seizures running!

Tuesday, 11 November 2014

Tap2Tag

One of the people who was presenting at the Epilepsy Action weekend was tap2tag.

Tap2Tag is a new way to carry your emergency medical information.  It uses NFC technology which most new phones now have.  All you have to do is tap your mobile phone against the bracelet or keyring and it will bring up the persons name and an emergency message on the mobile phone.

This simple video says it all:


This is a fantastic product which could make a huge difference to people with epilepsy.  They are also about to release a young child's size wrist band which I will get for Riley so she can wear one in case I have seizure and she runs off.

Monday, 10 November 2014

Potty Training

We have been trying potty training for a couple of weeks but it has not really happened.  She doesn't really ask to use the toilet so it has meant the only way to stop her having lots of accidents is to keep sitting her on the toilet.  I think she's then just got fed up and her behaviour has started to deteriorate.

I'm not sure whether she has full bladder control and either way she doesn't seem to want to use the potty so we have decided it is best just to leave it for a few months and come back to it.  It's Christmas coming up and we just want to enjoy that time together as a family.  She's not even 2 and a half yet, potty training can wait, for now we just want to enjoy time as a family.  I don't want it to become a big thing.

The one thing I would say is that you are given so much information about breastfeeding and weaning etc etc but when it comes to potty training there isn't that much guidance, people just sort of say "you'll know when they're ready" which hasn't really been what we have found.  There is no real way of going about it... no advice as to what to expect.  But anyway it hasn't happened first time around, but never mind, as Riley's book says "all potty stars need practice - no-one's perfect straight away!"

Epilepsy Weekend For All

I feel really bad as I haven't got round to writing about the Epilepsy Action Weekend for All which I went to last weekend.

The last week has been a bit of a blur, I have just had so much going on, from adoption to seizures, potty training to just being really tired... I have just got so much to blog about but just haven't had the time to get it all down on paper.  So here goes... I will be writing individual posts about some of the topics which were brought up over the weekend so I want this blog to be a short overview of the weekend.

The main thing about the weekend is that it is such an opportunity to talk to others with epilepsy.  It's a chance to catch up with old friends and make new ones.  In day to day life you just have to get on with things, epilepsy affects so many areas of our lives but you just have to knuckle down and get on with things as best you can.

The weekend gave me a chance to hear what other people both struggle with and are achieving.  It made me feel less alone, gave me inspiration to really go for the things I want and also gave me a chance to reflect on some aspects of living with epilepsy.

There was a girl there who has a lot of seizures, but she really inspired me, she doesn't let it stop her from doing so many things, from traveling on her own to riding her horses, it made me realise I need to really go for my dreams.  So the two things I really want to go for this year... training for the marathon and trying to adopt.

It also made me think about the way I treat the people around me, it made me think about the impact my epilepsy has on my Mum and Rich.  I think sometimes I don't think about them enough, I don't realise how hard it is for them.  Talking to people who don't have epilepsy themselves but their loved one does made me think about things a bit more from their point of view.  I think it is something I need to work on.

But generally it was a weekend full of lots of information and fun :)


Thursday, 9 October 2014

Learning to live with the new me...

Now this is going to sound strange… but as I am weaning off the Lamotrigine I am starting to feel different.  It was my sister who put things in perspective for me last week.  She asked how the med change was going and when I said OK but I feel like I am a bit moody some of the time.  She then said she thought I was much more like the old me, less zoned out and more aware of the world around me.
Then suddenly I could see it, what if this is what normal people are like, what if I have been so dosed up on Lamotrigine (which at the end of the day is a mood stabiliser) for the past 10 years that I have just been not quite experiencing the highs and lows of life.  Feeling a bit annoyed when people don’t seem to give a damn, being grumpy when I’m tired, getting frustrated… maybe that is all normal.
And all of a sudden I have realised I am think more, that probably sounds a bit crazy but if I am walking somewhere I find my thoughts are moving quicker.
All this increased mood and thinking is taking some getting used to, it makes me feel really tired by the evenings and I find it hard to put sentences together sometimes because I feel like I can’t keep up with my thoughts.  But I am feeling so much more alive, I think I just need to learn to order these increased thoughts and control some of my moody moments.
I just hope this is normal and not just that this fast thinking is a sign my brain is working overtime and it’s just a matter of time before I have a seizure…
But for now I am just going to enjoy being a little bit more alive :)
Me before I was diagnosed with epilepsy

Monday, 6 October 2014

Our adoption journey ~ another step forward

We got accepted to move forward with the adoption process!!!  Apparently about 50% of people get turned down at this point.  Now they are not saying my epilepsy won’t be a problem, not over that hurdle just yet but I don’t think they would be so enthusiastic for us to move forward if they thought it was going to be huge problem… anyway we will see.
I’m not going to be able to talk too much about the process I don’t think but I will put little updates along the way, it is an exciting journey but scary at the same time, there is a lot to consider.  I guess it’s a roller coaster a bit like our journey to parenthood biologically with Riley was.

Sunday, 5 October 2014

Run or Dye...

I did it! I ran 5k without walking and without having a seizure.  It was very relaxed and just a lot of fun and I have to admit I am pretty proud of myself.  I did however suffer a little the next day and so because I have proved to myself my brain can cope with a 5k I am now going to start training properly and hopefully get back into this running thing, maybe even run the 2016 Marathon...  So here goes nothing… going to be doing the couch to 5k training programme for the next 9 weeks 


Thursday, 2 October 2014

Finally a buggy with a dead break :)

So it's a bit late for me but finally a buggy manufacturer has done it... produced a buggy which has a dead break built in and the buggy looks fantastic.  Well done Phil and Ted's :)


Here's the key features:
  • auto stop braking system: safe & convenient
  • 26 riding options to accommodate 1 or 2 newborn babies up to 2 toddlers
  • rear facing double kit option
  • attach 1 or 2 car seats
  • cleverly engineered 'kerb pop' for ultra light handling
  • lightweight at just 12.5kg and 59cm narrow
  • one hand fast fold & automatic frame lock
  • easy adjust tail-free 5 point safety harness with shoulder pads for comfort
  • multi height adjustable handle with comfort foam grip
  • premium fabric
  • deeper, taller & easily removed main seat
  • seat back length: 64cm 
  • multiple seat positions from lie flat for a newborn baby to fully upright
  • follow-the-sun hood with handy storage pockets
  • one hand double kit recline
  • moldable neck support on double kit (sold separately) for a younger baby
  • large shopping basket
  • 12” air filled tyres
  • durable & easy clean plastic footwell 
  • 2-mode front wheel for multi terrain: swivel or lock straight
Here's the Phil and Ted's video... 



now I can see what they are getting at but checking your phone as you push your buggy towards a railway track or adjusting your sunglasses as you walk along a sea wall... seems like irresponsible parenting to me... sort of highlights that any parent can have an accident with their child and actually because we have epilepsy we are more aware of these risks and plan better...

Anyway I'm getting away from the point... this looks like a fantastic buggy and at £449 it isn't ridiculously expensive either compared to other buggies.

And here's the link to the online shop:

http://philandteds.com/uk/Buy/push/navigator-Buggy#.VC2u4PmwL-s

Saturday, 27 September 2014

The 'Look' of disappointment

There are lots of aspects of epilepsy which I hate but I think possibly the worst is ‘The Look’.

 Maybe it’s just me but I have found that there is a certain look which people give you when they are risk assessing in their head how your epilepsy is going to impact on a situation they are in control of. 

I like to think my epilepsy won’t stop me from doing anything and I am always really open about my epilepsy, I have been very lucky because my family and friends have always been really supportive and understanding.  But it’s when you get into the world of businesses and the main reason for it I guess is the suing culture we now live in. 

So I’m talking about when I sat in my occupational health appointments at work and they say ‘sorry you aren’t safe to work with the children on your own in case you have a seizure’ and then at the gym when they said ‘sorry I don’t think it’s safe for you to use the equipment more than walking in case you have a seizure’.
 
So why do I bring this up now?   Well finally at our adoption appointment last week, they said we would be put forward straight away if it wasn’t for my epilepsy but ‘they’d have to speak to their manager’ accompanied by ‘the look’.   

The Look is also usually accompanied by ‘are you sure you don’t know what triggers my seizures and I have no warning?’ with a slight air of desperation.  I would give anything to know my triggers and to get a clear warning, but the fact is I don’t, asking me over and over isn’t going to change that. 

I suppose I should in a way feel good because ‘the look’ isn’t one of judgement, more one of disappointment… so I fit all the criteria for whatever they want really well, they just can’t say yes because I am too much of a risk. 

The thing is there is nothing I can do about the possibility I might have seizures (and even if they are now controlled on Keppra it will be years until anyone can really rely on that because my seizures are so far apart) so there is nothing I can do about ‘the look’ other than not to even try for these things, but I don't want to do that either.

I guess that’s why underemployment is so high in people with epilepsy… there’s only so much of ‘the look’ you can take.

Thursday, 18 September 2014

Our little Welsh getaway

We managed to get away for a week to Wales.  We were really lucky with the weather; it didn’t rain the whole week we were away which was fantastic.  It was just so lovely to have some family time doing the things we love together.


We went back to Porthmadog where we went with my Grandad when I was just pregnant so it was a really special trip.  Some of you may be reading this without my back story so just a quick recap.  When I was 4 weeks pregnant I had a tonic-clonic seizure.  The week after we went away to Wales with my Grandad to explore where he used to go on holiday as a child.  I was very close to my Grandad and sadly he passed away 2 weeks before Riley was born which made the first few months quite difficult.

But our week there was amazing, we explored the beach and as Riley loves to tell everyone ‘caught crabs’! But seriously crabbing was so fun, I don’t know why I’d never done it before.  Just a tip, crabs love frankfurter sausages (not pepperami though).

I’ll let the photos tell the rest of the story :)


Getting the train to the top of the mountain




Roar!!!!!


 Fun at the beach





Riley loves animals




CRAFTY IDEA: We collected shells from Shell Island and made little presents to take home to everyone (just remember to boil the shells before you stick them together so they don't smell!).


Angel rays as Riley plays on Black Rock Sands, I'd like to think it's Grandad looking down on us enjoying the place he used to enjoy as a child.


And you can't go to the seaside without having an ice cream treat... yummy!


Wednesday, 17 September 2014

27 month check time



So Riley had her 27 month check and all is fine.  Her speech has really come on now and she is learning so quickly.  She comes out with things that just astonish me, it makes me think where or how did you learn that?

They talked about squints and we've already had an appointment at the eye hospital because she does have a slight squint, but her eyesight is fine so they are just monitoring.  As for eating and sleeping everything is fine with that.

The next hurdle is potty training and we have now bought a potty training book (someone should really write one which isn't so pink and cringe-worthy!). I'm not sure Riley is quite ready yet but hopefully in the next few months.  She sits on the potty a lot and we have had some success so that is a good start I think.

Here's a little picture of her playing with her train set.

Embedded image permalink


Sunday, 31 August 2014

Seizure Triggers

I sometimes sit and wonder, what triggers my seizures?  I have come up with many concepts over the last 10 years but alas I feel maybe my seizures just highlight the fact that we as human beings find patterns within coincidences.

My first 4 seizures occurred on a Wednesday afternoon... the first 3 happened 4 weeks apart, the 4th was 8 weeks after that... I know what you are thinking, must be the full moon thing right?  (OK maybe you weren't thinking that but it was my theory at the time)

Then I have had a few during or shortly after running... so maybe they are exercise induced?  But then I have had one when I was just sitting down.

I also seem to have them in the worst places, on my horse, on a chair lift, on a treadmill, walking upstairs... so my latest theory is maybe they are brought on by worrying that I'm going to have a seizure.  So I shouldn't think about it... but then I'm thinking about it more...


It is all so confusing and our brains are so complicated I don’t think I’ll ever know what triggers my seizures.

Sunday, 17 August 2014

Robin Williams


Usually when I hear a celebrity has died I think ‘that’s sad’ but then just get on with life.  But when I read Robin Williams died it made an impact, it made me stop and think.

So many of his films have had an impact on me: Mrs Doubtfire, Good Will Hunting and most of all Patch Adams.

"You treat a disease, you win, you lose. You treat a person and I guarantee you win"

Depression is such an awful thing.  It holds such a stigma.  It can destroy a life.  People struggle and struggle and just about cope and then something small can tip the whole balance.

It is something which I was becoming acutely aware of even before Robin Williams death. 

Epilepsy medication affects your mind, at the end of the day it aims to control the activity going on in your brain. Some medications like Lamotrigine are mood stabilisers, some like Keppra are linked with depression and mood swings.  So during medication changes it is so important to be aware of how you are feeling and talk about it.

The drugs can make you tired which makes everything seem that much more difficult and the risk of having a seizure at any time hangs over you.

It can be so confusing; it’s difficult to remember how you felt before starting a medication.  All you can do is give it time and keep talking to your family and the doctors.  The psychological side effects of medication are so much more difficult to cope with than physical ones.

It’s not surprising that mental health problems such as anxiety and depression are higher in people with epilepsy than in the general population.

I hope that Robin Williams can be remembered for everything he gave to the world and not for the fact he took his own life.  Through his work he touched so many people’s lives, brought smiles and tears to so many.  And from everything that the people closest to him say he was a generous and truly lovely person fighting such a difficult challenge.

I will always remember him, he has changed the way I look at the world and made the world that little bit better by making people think outside the box.

Friday, 15 August 2014

Epilepsy Weekend for All - Southend-on-Sea, Essex 2014

Yeap it's that time of year again!  I am so excited.  Really really looking forward to this :)

So what's happening this year?

Through workshops and discussion sessions, we will be looking at some of the many ways epilepsy can affect daily life. There will also be opportunities to chat with epilepsy professionals over a coffee. Topics will include:
  • Planning a family – pregnancy and parenting
  • Parents and carers – the challenges and joys of living with epilepsy
  • Adults – diagnosis and treatment, relationships, social life, achieving potential and managing risk
  • Ketogenic diet – find out more about this epilepsy treatment
  • Managing epilepsy – memory, mindfulness, coping with stress, sleeping well and medication issues
There's also loads going on for young people this year:

The challenge for young people over the weekend is to work together and support each other to create films, graphics, music and drama. Working with multi-media professionals you will learn new skills as you share your thoughts and feelings about epilepsy. You can choose from these options:
  • Drama – exploring living with epilepsy through performance
  • Podcasting – interviewing and recording
  • Graphics – designing and printing
  • Photography and videography – capturing your imagination
  • Editing for audio and video
  • DJ – mixing your choice of sounds
Information and discussion sessions:

  • For teenagers – relationships, alcohol, getting out and about safely, education, work...and play
  • Siblings – a chance to share experiences
Also happening:

  • Relax and enjoy a clothed massage
  • Family disco and karaoke (and we all know who the stars will be hehe!)
  • Keep in touch – photo wall and contact envelopes
  • Halloween fun – apple bobbing and snap apple
  • Creche
  • Face painting
This year the weekend is taking place at the Park Inn by Radisson Palace at Southend-on-Sea. Our special price includes your accommodation, meals and all of the Epilepsy Weekend for All activities. We hope you will join us - book today to be sure of your place!

Prices:
Adult (18yrs and over): £60 each (day pass £25)
16yrs and 17yrs: £30 each (day pass £15)
Under 16yrs:  Free
Twin, double and family rooms are available. We also have a limited number of accessible rooms for those with mobility requirements. Single rooms are not available but we will pair single guests with another delegate of the same gender, or feel free to bring a friend.
Car parking is free but permits must be arranged in advance (residents only). There are excellent rail links, with Southend Victoria and Southend Central stations close by.
For more info and to book your place visit the Epilepsy Action website here

Tuesday, 12 August 2014

Our Adoption Adventure

Rich and I have been thinking long and hard about having another baby.  We want Riley to have a little brother or sister and another child would complete our family.

All our friends are now having second babies and so it is becoming more of a topic of conversation.  At the moment with my medication changes it wouldn't be the right time for us to try for another baby.

So it got us thinking, do we want to go through pregnancy and the first few months of having a tiny baby?  I didn't enjoy the first few months, not from an epilepsy point of view, but I just found it so so hard.

I wouldn't change having had a baby for the world; it is something I think every woman should be able to experience whether or not they have epilepsy.  I don’t want it to seem like I am being a hypocrite in doing all this.  In fact in a way I want it to prove that there is another way to have a family if you have epilepsy.  The fact is pregnancy isn't for everyone (whether or not you have epilepsy) and I don’t think we want to do it again especially when there is another option.

That’s why we started thinking about adoption. It doesn't matter to us whether I give birth to our child, it doesn't matter at what age they join our family, they will be loved just as Riley is and I hope we have a lot to offer a child who hasn't had the easiest start in life.  It’s actually really exciting and something which I think will make our family complete. It's a whole new adventure for us as a family.


We know it could be a long process and I hope we don’t fall at the first hurdle.  I hope my epilepsy doesn't stop us.  So I guess this in a way is a new chapter in our journey.  We've just started contacting some agencies and looking into the process.  We hope we can start the process in the New Year.  So I guess watch this space.

Saturday, 9 August 2014

Commonwealth Fun!

Riley doesn't watch a lot of TV but with the Commonwealth Games happening at the moment we've been watching some of the sports.  Riley has some favourites... her favourite is the swimming and it's funny because when she swims on a Sunday she's started touching her toes before she jumps in like doing a racing dive!

She also likes the running which is coming in handy as I can wear her out by saying run to the wall and back, ready steady go and off she goes with a huge grin on her face!

But the best bit is her forward roles... she loved watching the gymnastics and the next thing we knew she started doing forward roles and now she does them everywhere!!!

video

Thursday, 31 July 2014

The funny thing about memory

Ok, so I struggle with people's names, I mean really struggle and it has been shown that Temporal lobe epilepsy (like mine) affects that sort of memory.  It is something which makes me so so anxious and so something which I am very aware of.

I helped at mini camp at the pony club I used to go to and it was really strange. I managed to remember 7 children's names only being told them once.  It wasn't the child I could link the name to, it was the pony...

There must be something in that... I just wish I knew what and how I could use it day to day... other than making everyone ride around on a pony.

So here's Riley on a pony (so I never forget her name!)

Sorry it has been so long

I can't believe I haven't written anything for so long. Time just seems to be flying by and I guess quite a lot has been going on in my life.

I'm going to start with Riley and how amazing she is. At the moment she is just learning something new everyday.  The most amazing thing is how fast her speech is developing.  She was a bit behind in her speech when she turned 2 but it seems like she has just skipped the sticking 2 words together stage and is now talking in full sentences! Everyday she learns new words, I just can't keep up with her!

The second main thing going on is this meds change.  I am now 2 weeks away from being on the maintenance dose of Keppra and have started weaning off my Lamotrigine.  It's all going ok, no major seizures at the moment which is good.

I just feel so so tired though. It is very difficult to judge whether I'm feeling low because of the Keppra or just because I am so tired. I just can't be bothered sometimes and I have been a bit snappy at times but again I think it's just because I am tired.  The main thing is that should get better.  I think I just need to be patient and give it time.  (I have a lot more to write on this subject but I am tired and can't put it down in words right now).

I have had some little panic attack things and one focal seizure... things just seem a little unsettled at the moment but hopefully everything will be settled by Christmas time.

I'll leave you with a picture of Riley, can't believe how fast she is growing up.

Photo: We found the Gruffalo!

Sunday, 15 June 2014

Side effects ~ do we just get used to them?

So we all take these meds, everyday for the rest of our lives.  I can't remember what life was like before taking them, so how do I know whether I am having side effects?  Do we just get used to living with them?  

At the end of the day it's really hard to say I can't live with these side effects for the rest of my life unless they are really really bad... the tiredness, stomach problems and dizzyness, I CAN live with it but should I? How much is it affecting how I live life?

Anyway now I am starting Keppra it seems like it could be a new start, maybe my stomach problems will get better and I'll get seizure control... the idea of reducing my Lamotrigine in a few weeks time comes with mixed feelings... hope that it could be the one and fear because it could lead to more seizures.

Wednesday, 11 June 2014

Epilepsy Care Free Monitor

I realised I never wrote about the epilepsy alarm my parents bought me when I first had Riley.  I have recently had a few problems with it and had to send it back to be fixed which is why it got me thinking about it.

It has made me feel safer and given my family peace of mind.  Hopefully I will have it back before I start to reduce my Lamotrigine in a few weeks.

There are a few things to remember:

  • It only works a certain distance from the alarm box
  • It's not waterproof
  • It needs to be charged 1hour in 24hours
  • If you clap too enthusiastically along to a children's song it sometime alarms
But it is a fantastic monitor, it is expensive but it has definitely made me feel more confident about looking after Riley :) 

We got ours from a company called Independent Living Supplies who have been fantastic both setting it up and since then when I have needed to ask questions and recently with the problem which is currently being fixed.  Their number is:

01438 821251

Tuesday, 10 June 2014

Riley's 2nd Birthday Party

So Riley is now 2! I can't believe how fast time has flown by.  We had a lovely BBQ on Sunday for her birthday.  The weather was good and it reminded me how lucky we are to have such amazing friends and family :) Here's a few pictures of her birthday:





So I think this is a good time to look at what Riley is doing now... so she can run and has literally just learnt to jump.  She has really started talking more in the last couple of weeks.  She's stringing 3-4 words together and you really feel you can have a proper conversation with her.  It's a really exciting time, she is learning all the time and it's amazing to watch her.

Friday, 6 June 2014

Here goes nothing!

Well Wednesday was my epilepsy specialist appointment.  I know I say it all the time, but I feel very lucky to have such good care.  So where are we at?

I am now on a med change to Keppra.  Hopefully it will all go OK, apparently 10% get mood changes, so either depression or snapping at people.

It’s going to take 6 months… it seems like forever, I knew it would take a while to swap but I wasn’t expecting quite that long.  I know it’s for the best to do it very gradually but it seems like it’s going to take a long time to get to a base dose which may or may not control my seizures…

I guess the truth of the matter is I’m scared, scared of the possible side effects, scared I’m going to have even more seizures and scared that time is slipping by and it just takes so long to know whether it’s under control.


But I need to take what I learnt at Cherish and be brave.  I think I need to focus on helping others and all I can do is wait and see what happens with this med change.  

Tuesday, 3 June 2014

Riley's 2 today!!!

I can’t believe Riley’s 2!  I don’t know where the time has gone. 

Today we had a fun day at Priory Park in Reigate with her best friend Noah.  They played in the playground for ages, then we had a picnic and they played football, then we walked round the pond and saw all the ducks, followed by more playing in the playground and a cup of tea to finish.

Riley has been very lucky and got lots of lovely things including the slide/wendy house/tunnel we bought her and an amazing red tricycle which my Mum and Dad got her.


On Sunday we are having a BBQ for her so I will put up more pictures then.  Fingers crossed for good weather.

Photo: Can't believe Riley is 2 today! Where has the time gone? Spent a lovely day playing with good friends :)

Monday, 2 June 2014

Riley's Riding Pipe!

We've got Riley riding before she's 2 (just)

Photo: Riley's first proper ride :)

...and all I can say is she loved it.


(Thank you Pipe for being such a star pony)

Cherish Women's Conference

So I went off to Cherish women’s Christian conference last weekend.  I didn’t really know what to expect but it turned out to be great fun and very thought provoking!

It was a good chance to spend some time with Emily, and to get to know a lot of the other girls at our church better.

I know that a lot of people don’t believe in God and I’m definitely not here to try to convert anyone.  But it is part of my life and spending a few days really thinking about my relationship with God did make me see things in a new light.

I think what I took away from the conference is be brave and do as much as you can to make a difference in this world.


I’m not saying the future will be easy and that I won’t have bad days, but what I do know is that as much as possible I am going to face my challenges and use them to do something positive.

Saturday, 31 May 2014

Sleep ~ finally getting there!

Sleep... it has been a long hard slog but touch wood Riley is now settling to sleep on her own and usually sleeps through from 8pm til 7am... touch wood.  Sleeping in the day is hit and miss but I can live with that.

I thought I would share a couple of little things which have helped us on the journey to a good nights sleep...

Ok first blackout blinds - we bought easyblackout blinds which basically Velcro onto the window frame.

http://tinyurl.com/ntkgmme





The second thing was clips to keep her sheet in place... it sounds silly but when she's screaming because she doesn't want to sleep or just wriggling in her sleep, the sheet comes off and she ends up sleeping on the waterproof mattress.  Her cot is an odd size so fitted sheets don't fit.  So we got these clips and they are amazing! 

http://tinyurl.com/noaap4z

Wednesday, 21 May 2014

It's National Epilepsy Week

This year Epilepsy Action are asking what it’s really like to be diagnosed with epilepsy and letting you know what support is available.

So I thought I would try and answer that question.... 'what is it really like to be diagnosed?'

In one word...  SCARY. It was scary for me, scary for the people closest to me and scary for the people seeing me have a seizure.

It seems a long time ago now, I've been diagnosed with epilepsy for around 10 years, but I probably had epilepsy my whole life, it's just I only suffered focal seizures until 10 years ago.  But I still remember those first few months, a blur on one hand because of the seizures and yet a time I will never forget.

I remember being told it was epilepsy and being told I couldn't drive anymore and just bursting in to tears.  In fact I did a lot of crying in those first few months, crying because I woke up from a seizure confused, crying because friends didn't want to know me anymore, crying because of the side effects of the drugs...

But as the months and years have passed and my seizures have come and gone with no rhyme or reason it has become part of life, part of me and I have learnt to accept it.  That doesn't mean I'm not still scared, the fact I could have a seizure at anytime is scary, I have just learnt to manage that fear and put it to the back of my mind most of the time so I can get on with living life to the full :)

The most important thing is to find support, I am so lucky to have my wonderful family, friends and neighbours.  

The second most important thing is to find out all you can about your condition that way you can advocate for yourself, sadly doctors are not always right and by learning as much as you can you can find the one who knows more than you do and who you feel safe in the care of.  It has taken a while but I feel very lucky to have my epilepsy specialist and the nurses at Queen's Square looking after me.


Wednesday, 14 May 2014

The ups and downs of epilepsy awareness talks

Giving epilepsy presentations is a strange thing sometimes.  I get quite nervous when I do them, but I think they usually go quite well.  But it is amazing how the audience makes such a huge difference. Sometimes the room is filled with people who would rather not be there but have been made to go by a manager!
But this afternoon I went to a really inspiring school who truly wanted to do as much as they can to support a little boy who had what sounded like quite severe epilepsy.   They were working so hard to give him as much independence as possible while keeping him safe considering everything from reading time (where he often fell asleep) to going to the toilet.
I always find it easier to answer people’s questions rather than just talk at them and they asked so many questions mainly about how what they had heard could impact on the boy himself.  They are in contact with the little boy’s consultant it gives them a huge opportunity to help him and I think the training left them with 2 key points which I think are important for everyone:
  •         Know what it normal for the person so you know when to seek help
  •         Know what’s important to monitor both from a seizure point of view and also the medication side effects.

It really gave me hope that trying to raise awareness of epilepsy is making the world better for people facing its challenges even if it is just one person at a time.

Wednesday, 7 May 2014

Getting Riley into Horses early!

On Saturday we went on a girly day out to Badminton Horse Trials, my mum, Riley and me (3 generations). The weather wasn’t amazing but somehow we seemed to find a break in the heavy showers and didn’t get too wet.  The wind was pretty bracing though.  And it struck me that walking the however many miles (mainly with Riley in the back carrier, but she walked a long way) there were children of all ages (even tiny babies) and I didn’t see a single child whingeing.  Basically I think kids brought up around horses are pretty tough and I’m so glad Riley is one of them.


Monday, 28 April 2014

Riley's Swimming Lessons

Riley is still doing swimming lessons on a Sunday and it really is amazing what she can do at only 2.  I’m not saying she can swim lengths; she can’t even swim a metre.  But she jumps in off the side, can turn herself round in the water and can climb out of the pool.  I think the most amazing thing is she is just so confident in the water, she goes underwater and just looks so happy in the water.  She really is a water baby.
But the biggest thing she can do is climb onto a big float, run across it and then jump into the water.  It really is amazing, I wish I could show you a video but alas it takes other children and parents to hold the float so I can’t.  But you’ll have to take my word for it, it is amazing!



Wednesday, 23 April 2014

All change on the meds front...

Ok so now it’s definitely going to happen… 2 seizures in 3 months is not good for me. A med change is inevitable.  I know I could just call my epilepsy nurse and we could start the transition to Keppra straight away, but that just seems such a light way to make a huge change.  

I feel I need to discuss it with my consultant, I don’t know why really, I guess I just have lots of questions and would rather ask them face to face.  How long will it take? (I know the answer will be we don’t know) What happens if I get side effects? Is Keppra even the only option? The list goes on and on…

I guess the truth of the matter is I’m really anxious about it all, I mean 10 years of being on 1 drug, at least I know where I am with Lamotrigine.  I’m worried Keppra is going to change me and I won’t know it.

Anyway at the moment I’m trying not to think about it too much, the sun is out and I’m just going to enjoy it.  My appointment is at the beginning of June so after that I know there will be challenges to face but for now I’m going to try not to worry too much.

Sunday, 20 April 2014

Our amazing American adventure in pictures

Where do I start?  It was amazing!  I think it will be easier to put it into pictures so here it is…

We're on our way :)



Welcome to America (at 1am London time)


Riley's behind bars! (at Alcatraz)



Gotta get a Tram in San Francisco

]

Baby, Mummy and Nanny


Winchester Mystery House


#DancingRobot


Exploring Gold Country


The Big Trees



Exploring the wild west (film country)


The beautiful Emerald Bay at Tahoe


Snow!!!




Rich and me on skis together


My wonderful Dad who looked after me during my seizure


So Cool!


Auntie Nikki and Riley on a sledge


Some apres ski



Groveling around in the dirt :)


Fun in the desert



How old are we????


Enjoying the Oasis



Badwater


The view from our beautiful hotel on the last night


Seaworld



One exhausted baby!


Last stroll along the beach


Sleepy, happy baby flies home :)


All I can say is it was an incredible 2 and a bit weeks :)