Monday 24 June 2013

Epilepsy Action's London Weekend for All ~ Fri 1- Sun 3 November 2013

In 2012 Epilepsy Action held a weekend full of talks and workshops relating to all areas of epilepsy and they are doing it again this year...

People with epilepsy and their families are invited to take part in our ‘weekend for all’ event. It’s the perfect opportunity to get away, relax and have fun while learning more about epilepsy and meeting other people and families affected by the condition.

People will have time to hear from professionals, ask all their questions in an unhurried and relaxed atmosphere and make their own networks and contacts for the future. There will be workshops, creative and learning sessions and games and activities.

It's going to be held at Baden-Powell House, South Kensington

People can attend on one or both days, stay overnight or travel daily as long as they book appropriately in advance.

It looks really good and I maybe helping to run a workshop for women thinking of having a family, are pregnant or have young children... will hopefully be a great way to set up some sort of network so we can all meet each other and help support more women.  If you're interested in coming along you can book tickets at the link below...

They are also looking for people to be involved in helping out at the event be it helping to set up etc or sharing experiences.  They are also looking for proffesionals who can spare their time to give information and support to many people with Epilepsy...  they are looking for the following professionals:

  • Epilepsy Specialist Nurses
  • Doctors with an interest in epilepsy, particularly Neurologists specialising in epilepsy
  • Surgeons experienced in epilepsy surgery
  • Technicians working in MRI and other scanning in prep for epilepsy surgery
  • Psychologists with an interest in epilepsy
  • Occupational and Physiotherapists
  • GPs
  • Pharmacists
  • Relaxation and Massage Therapists
  • Craft Workers
  • Youth Workers
  • People with epilepsy willing to share their experiences
  • Volunteers willing to give their time to look after our delegates and professionals on this weekend
  • Entertainers 
If you're interested in getting involved and can give up some of your time e-mail Marie Edgar:

St Elizabeth's ~ an Inspirational Place

I just wanted to write a post for a charity my Dad came across... it is a charity supporting people who cannot control their Epilepsy and who have other complex needs.  It looks like an amazing place and I thought it might be of interest.  For me it puts into light for me how lucky I am that my Epilepsy is well controlled.  The impact it has on my life is nothing compared to some people, it is why Epilepsy must never take over our lives, it is just another challenge to overcome...

Monday 17 June 2013

Wow, we're in Prima Baby and Pregnancy magazine!

 Well we are in Prima baby magazine this month... a 3 page story!  It is very odd to see ourselves in a magazine, but I just hope it helps at least a few women with epilepsy to be more confident about having a baby, because it is the best feeling in the world being a mum and I hope that Epilepsy doesn't stop anyone from experiencing it and having all the support they need.

If you are reading this blog after reading the magazine then thank you for taking the time to read my blog, I hope it is interesting and most importantly I hope that it helps a few people.  Please contact me if you want a chat, my e-mail is or join the facebook group which is very much in it's early days but I am hoping will give people a way of contacting one another to share experiences and give support.

Thursday 13 June 2013

Riley's 1st Birthday Photos :)

As promised... Riley's special day :)


Picnic Bench from Nanny


A Tyre Swing from Ed and Lauren

 Lily Dog


Paddling Pool with Friends

Gruffalo Cakes

Aunty Nikki's Picnic


Sickness Abroad ~ Nightmare

I think sometimes we all take the NHS for granted...  while we were away in Switzerland, while we had a fantastic time, Riley firstly got conjunctivitis then the last 2 nights she just wouldn't settle... it was worrying for us because we thought something could be wrong and we didn't know exactly what to do if something was wrong.

At home we always feel safe in the knowledge that for non emergencies outside doctors hours we have 111 and for emergencys we obviously have 999.  We don't even need to consider how much it will cost and how we'll pay for it.  But abroad we just don't know the processes and although we had travel insurance you just don't know how it works...

It got me thinking about what would happen if I had a seizure abroad... while in Switzerland we had my friend to send us in the right direction... but if we were on our own it would be a bit scarier.

Riley's 1st Flight and America

So our Riley's first flight...

On the way to Switzerland it went really well, we kept her reasonably well amused and she put her hands in the air on take off and landing.

On the way home things weren't so great, we all had colds so as we came into land the pressure in our ears was really bad.  Riley was screaming and squirming around, it was horrible, I felt so bad.

So what we have learnt is hope Riley doesn't have a cold when she flies, understandably.

I don't think I have spoken about it before but now the flights are all booked... we're off to California in March next year.  We used to go as children, we have always skied (my Dad's a ski instructor!) so the plan is to fly into San Francisco and head up to Lake Tahoe to ski, then head down to LA.

It's all very exciting and we are in the process of saving for it.  Lake Tahoe is truely beautiful...

Switzerland ~ a wonderful weekend away

So we went to Switzerland on Thursday and got back on Tuesday.  It was a fantastic few days away and we really enjoyed ourselves.

It was so good to see my friend Leti and for Riley to meet her little boy Nico.  They seemed to get on really well and Riley loved watching him as he's 3 and so bigger and cleverer than her!  Leti is one of my closest friends, it's hard being so far appart but we've kept in touch for 4 years now so I think that shows we're pretty close :) Nico is gorgeous and he is so full of energy, very clever and interested in everything that is going on.  I hope Riley grows up to be so full of life.

We were very busy, we had glorious weather all weekend pretty much, temperatures into the high 20s.  So we were outside pretty much the whole time.  We went to the lake twice and Rich swam in it!  Riley stick to the kids pool (and I think picked up conjunctivitis ~ will get to that bit later!)

We climbed up a big hill (to the british probably a mountain...), went to the zoo and explored some of Zurich and the village just outside where my friend lives.

I also visited another friend who I went to junior school with.  She is a nanny for a family in a very nice part of Zurich!  She seems to be really good at her job, the children she looks after are lovely.  Talking to her I came to realise that while we complain about childcare in England, the cost of childcare in Switzerland is huge.  Children come home from school at lunchtime so Mum's can't get a job for the whole school day as they have to be home at lunchtime.

Speaking to my friend who we stayed with, she actually pays more in childcare costs than she earns, she just works to keep up her skills!

They pay £170 a day, makes the £35 a day we pay seem nothing!

Wednesday 12 June 2013

Euston Station Collection ~ £300 not bad!

A couple of weeks back we did a collection in Euston station, we actually raised over £300.  It was an eye opening experience...  it's amazing how people can look straight through you and even walk into you!  I spent the first half of the afternoon just smiling at people which seemed to get me a bit of money, a lot of people just said they felt guilty with me standing there!  However one lady just walked over and gave us a £10 note!

In the second half of the afternoon another girl joined me, it was great to chat to her, we seemed to have a lot in common.  I don't have many friends with epilepsy so it's always great to meet others in a similar situation to me :)

Apparently it is illegal to ratal a charity tin in London as it is intimerdating... hmmmm... well we found a technique of sort of moving our buckets in the direction of groups of people thus not intimerdating anyone individual... well that was our understanding of the issue anyway.  It seemed to work pretty well and I think raising £300 as a group over the day is pretty good.

Wednesday 5 June 2013

Nursery ~ maybe we're getting there?

Today Riley was at nursery, she cried when I left her but when I picked her up she was sitting in the garden smiling away. She didn't cry when she saw me :) so maybe we're getting there.

When I start this new job she's going to be at nursery one more afternoon a week so hopefully that will help her settle in even more.

Riley's 1st Flight ~ Off to Switzerland in the morning

Well tomorrow we are off to Switzerland extremely early in the morning. We are getting the 5.20am coach from the end of our road which is fantastic. Our flight leaves at 7am so we'll be in Zurich mid morning :)

We're going to visit one of my closest friends so it's very exciting, Riley hasn't met her yet so it will be a very special trip. It's Riley's first flight, hopefully she'll be ok.

I'll write all about it when we're back on Tuesday, Bon Voyage :)

A New Job ~ Online Community Co-ordinator

Well up until now I haven't mentioned about my job situation much. But I have a new job :) it's a new challenge, something a bit different but sort of an extension of my blogging... which is fantastic. It's a bit scary, having something which at the end of the day comes down to me, but I am really excited about it and have some ideas to work on :)

It's a way of supporting parents without the limitations of not be able to work one to one with the kids, so I can give my full and it is a real challenge. It's developing the online forum which is linked to the brain injury information hub, so I'm not leaving the place I work just transferring departments. I will have a lot to learn but I'm really up for something completely different.

Everything seems to be just slotting into place, I feel very lucky. I start on the 1st July, so watch this space :)

Tuesday 4 June 2013

Riley's 1st Birthday :)

Monday was Riley's 1st Birthday I can't believe how fast time has flown by! She had a lovely weekend with a BBQ for her on Saturday, we are very lucky to have such wonderful family and friends, she had a wonderful day playing with her friends and being fussed over :) she was exhausted by the end of the day, she fell asleep in a bucket! She got lots of beautiful things, clothes, a hand made door sign, a knitted doll, a sand pit and probably one of the most special presents a swallow mobile, it was so touching, a tribute to my grandad :)

On Sunday we went for a picnic and walk at a wildfowl reserve for my sister Nikki's birthday and had a lovely day in the sunshine. Then on Monday we spent the day with Nanny and Lily dog and yesterday we went for a picnic in the sunshine with two of her best friends.

So all in all a wonderful Birthday period ~ photos to follow soon :)