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


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