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.