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.

Once upon a time there was a little robot called Tim-Tron...

I thought I'd write a bit about a new book which will be available from The Children's Trust (where I work) from next week... it is called Heads Up Tim-Tron and is about a little robot who bangs his head.  The aim is to help explain brain injury to younger children in a colourful and interesting way.

The story was written by my manager Ian and has beautiful illustrations :) there is also an audio read along track by Richard Hammond.  It will be available for just the cost of postage and packing so hopefully it will reach as many families as possible.

You can read more about how Tim-Tron was created in a blog written by Scope:

http://blog.scope.org.uk/2014/01/03/creating-tim-tron-the-robot-with-a-brain-injury/

It is one of 3 publications that The Children's Trust are releasing next week, the second one is a Medi-Kidz comic book which aims to explain acquired brain injury to older children.

There is an epilepsy Medi-Kidz comic already which is available for free from Epilepsy Action (click on the comic to order a copy)...

The final book is a parents handbook which will be packed full of all the most key information about childhood brain injury.

All the books will be available on Monday and I'll post the link to the site when it's up and running :)

Children in Need ~ tomorrow night

The charity I work for is going to be on Children in Need tomorrow night :)

The Children's Trust's play team are partly funded by Children in Need and tomorrow night there will be a father telling his very brave sons inspirational story to help raise money for Children in Need everywhere :)

So watch Children in Need tomorrow night from 7pm on BBC1

My new job ~ really positive start

I am really enjoying my new job.  The fact that I can still get out and about and talk to staff and parents about what I am doing to get there ideas is fantastic, I couldn't imagine doing an office job sitting at my desk all day, I just can't keep still that long!  But on top of that I feel like I am helping parents, or at least have the potential to help parents if I do a good job :)

And one of the best bits is I'm not thinking about my Epilepsy the whole time while I am at work as it makes no difference to my job, even if I was having regular big seizures I could still do my job, that is a good feeling, it means I no longer worry so much about having a seizure in relation to my job, and now Riley is getting bigger, if I do have a seizure with her the impact would be far less for her.  Don't get me wrong, I still think sometimes if I have a seizure now Riley could get hurt (especially now I'm carrying her up and down stairs as she's too big for her car seat) but the fact is I think about it less at work, which can only be a good thing :)

New Job ~ First Week

I haven't written anything for a while.  The main reason is I started my new job this week and it has taken up most of my brain power!  My first week seems to have gone well, everyone in the team seems lovely and I think most of what I have been taught this week has sunk in.

I've basically started in the role of online community co-ordinator for the information section on the website of The Children's Trust where I have worked as a rehab care assistant for the last 4 years.

It's a big change, first off because it's non clinical, I've never done an office job before so it's a bit strange sitting at a desk, hope I don't get fat!  But the biggest change is it's something that before I did this blog I knew nothing about, and this blog only scratches the surface.

But it is very exciting, the brain injury hub is great and I think what it provides is a great service to parents and families of young people with epilepsy.  They need the support of each other as they travel on their journeys full of highs and lows.  I am really looking forward to getting stuck into it, so watch this space.

(Also it has prompted me to link this to my twitter, now I know a bit more about twitter)

Nanny's First Day with Riley

Yesterday was the first day I left Riley with Nanny while I was at work.  When Rich and me came in after work, Riley was sitting on Nanny's lap all ready for bed reading a book.  When she saw us she gave us a big smile and wanted a cuddle, but no tears like when we pick her up from nursery.

Nanny said they had had a lovely day, they'd been to The Nest, spent time in the garden and had a walk with Lily dog.  Riley must have been knackered out as she slept from 8pm until 6.30am without a feed, woke for a feed and is now still asleep! (it may help a little bit we've put blackout curtains in her room...)

I am so glad they had such a lovely time and Riley was so happy, at least that's one day of the week I won't need to worry about her being upset and unsettled.  All I know is Riley loves her Nanny :)

Back to Work ~ Perceptions Change

Well I'm back to work and I don't know whether I have ever really said what I do... I work in a rehabilitation unit for children and young people who have had a brain injury.  They can be any age from 0-18 and can have suffered any injury to any extent.  So it is a very varied job.

Going back to work as a parent has made me look at the children and their families from a slightly different angle.  I didn't think it would make a difference but I feel it somehow does.  I think I put myself into their situations a bit more, don't get me wrong I can't begin to imagine what the families are going through.  But I can't help thinking what if that was Riley?  How would we cope?  I don't think it makes the job any harder and I still really enjoy work, I think it just adds a different dimension to situations.

I have always been so inspired by the children and families I work with, they have such huge challenges to face and they work so hard, I don't know how they do it, but I hope we help to support them as much as we can.

Riley's 2nd Full Day at Nursery

Yesterday Riley went to nursery again.  It was the first time I left her as I had managed to palm it off to Rich last week.  It was horrible, she was screaming and it was so hard to walk out and leave her.  I spent the whole afternoon worrying about her.  But it turns out she actually had a good day, in fact possibly enjoyed it... she cried everytime the door opened but apparently stopped pretty quickly and carried on with what she was doing.  I am so relieved she is settling in, I knew she would and I know she'll love it eventually.

Not being with her yesterday made today somehow even more special, it reminded me just how much she means to me :) we went to Bocketts Farm and saw lots of really new lambs and piglets, was so great to see her so happy looking at all the animals.  She's a bit insecure at the moment, she doesn't like being held by other people but I'm hoping as she gets used to being with other people and knowing we will come back for her she'll become more confident.

Back to Work

Yesterday was also my first day back at work, luckily I have gone back to work on the unit I left so everyone is very supportive.  Although it was a little daunting by the end of the shift it was like I hadn't been away.  It'll take some getting back into the swing of things and learning about the kids on the unit as they are all different from when I left.  Working part time means I think it will take longer but I feel like I still have a lot of time for Riley which is how I want it to be.

It is still a little frustrating with the limitations that I have from my Epilepsy but that's life and I feel very lucky to be working with such a great team who all know my situation and look out for me, it definately makes things easier :)

It was actually a very strange feeling being back at work and away from Riley, I felt lost not having her around but it was also quite nice to be doing something for me, even if it is work...

Nursery ~ what a nightmare!

Well returning to work is looming, in just over a weeks time I'll be back. I'm now going back to the unit I left until a new unit opens which means I can settle back in where I know I can do the job and have a lot of support. So at least that's sorted.

But nursery is a nightmare, Riley was ill Friday, had a temp of 39.2 so we went off to the doctors as I was very worried she seemed really distressed. The doctor said she had a sore throat so was probably a virus. Well over the weekend she was fine, couldn't believe how quickly babies can go from well to ill to well again!

Well maybe she wasn't so well... after spending an hour in nursery with me there screaming she came home and had diarrhoea yesterday evening so obviously she can't go back for her sessions today and tomorrow.

She was so unsettled and distressed there, it really upset me and now I feel bad as maybe she was feeling rough and that's why she was crying... anyway now her first settling in time on her own won't be until Tuesday and then Wednesday I'm back at work but luckily Rich is off :( so she won't have to do the full day in nursery.

It's all just being drawn out and it was really hard yesterday... wish I didn't have to go back, but I do so I just want to get into a routine and for Riley to be happy and settled, hate seeing her so upset :(

Nursery ~ Riley's first taster...

Yesterday was Riley's first taster of nursery... we went to look round the nursery to see what it's all about.  It seems like a really good nursery, the days are much more structured than I imagined them to be.  They have amazing toys and so many activities.  The emphasis seems to be on messy play, I wouldn't send her there in her best clothes, but in my opinion the messier they come home the better time they've had!!! The have a mud pie making area which basically looks like a mud pit with lots of kitchen things and toy kitchen stuff, looks amazing!

While we were looking round Riley was sat on the floor playing with all the toys and smiling at everyone. Well I left her with a couple of the carers for 5minutes while I went to book in some more sessions for her and when I came back she was in tears, I thought she'd be fine me leaving her there but it would seem this nursery business is going to be harder than I first thought.  I'm sure she will settle in and love it but it was aweful seeing how upset she was with me just leaving her for 5minutes...

Anyway we've booked in a few trial days the first with me in the building doing the paperwork and then 3more 2hour times where I leave her on her own!!!  We will see how it goes...

Going back to work is becoming more real and more daunting, I have my second return to work meeting a week today, it's getting a bit close to my starting day and I really just want to get things sorted out and know where I am going.

Going back to work ~ daunting!

9 months is looming near, actually very near... mid February but with annual leave which I haven't taken it's more like April I have to start.  If I'm honest I'm not really looking forward to it and keep putting off thinking about it.  But I really need to face up to it.

Don't get me wrong, I love my job, just I love being a Mum more. It's not that I haven't thought about it at all... I have a place at the nursery from April, my Mum is getting a cleaner to have her one day a week and then I'm hoping to work every other weekend.

But I need to have a meeting with my manager and HR to put it all inplace and check my holiday all fits in.  It was meant to happen last week but then it snowed and haven't got a new date.

I haven't even started to think about getting to and from work without being able to drive and fitting in with Riley's bedtimes.  Then there's the issue of milk feeds... Riley's still having 2-3 milk feeds during the day so going to need to get on formula but hoping she might take it out of a tippy cup so no sterilising... but I need to try that and push drinking as she doesn't seem to drink much.  Also don't know how we're going to get her up and at nursery by 7, Mum's offered to come and stay till she wakes up.  Just so much ligistics can't get my head round it all!

That's even before the emotional side of leaving her at nursery and the scaryness of starting work all over again and getting back into the swing of things :(

All in all very scary, but once I'm back I'm sure I'll love my job again just like I did before I went on maternity leave.

24 weeks ~ MAT20 form

I had another appointment with the communitymidwife, it was a different midwife, which didn’t really matter to me as mostof my care was being carried out at Epsom Hospital anyway, but it did mean Ihad to repeat my medical history again. Having had to tell so many people my medical history has meant that Ihave managed to fit it into a nutshell. The main thing was I got my MAT20 form and was then able to hand in mymaternity request.  I had decided I wanted to try to work until 12^th May, that would give me 3 weeksuntil the baby was due, I knew we could only afford for me to take 6 months off and so I didn’t want to waste too much before baby is born.

22 weeks ~ work update

I haven’t spoken about my situation at work recently, I had really given working on the unit a go but was really struggling, Due to the changing nature of the unit, taking on more 1:1 technology dependent children, I was finding I was feeling more of a hinderence than a help, I was feeling stressed and like I was letting the children down because I was always having to wait for someone to come and help me.  I felt every day I was at work it was all about what I couldn’t do and not what I could.  I eventually decided I had to have a chat with management and got moved to another unit.

From the first shift I felt less stressed and more able to do a good job. Because the children were less dependent you worked as part of a team so there was always someone else around to ask for help.  I felt more supported and I didn’t need to worry about being left on my own because everyone was looking out for me and often the children were independent anyway.  It was like a breath of fresh air, I found I was enjoying the new challenge of working with children who were more aware of what was going on and my confidence was building.

It is great to work somewhere with such a huge diversity of children and units.  I feel very lucky to be able to be moved somewhere more appropriate to my needs.  It is still hard all the limitations put on and working below my potential but that's life, there's nothing I can do about it so may as well make the most of it.  The children I work with are inspirational and if I can help them to meet their challenges that's what counts.

4 weeks ~ pregnant! and who to tell?

On arriving home after the holiday Rich just mentioned in passing it was strange Ihadn’t eaten the chocolate we had in the fridge while we were on holiday.  It got me thinking, my Mum had always saidwhen she was pregnant she went off chocolate…

I knew there was the possibility I was, I had had to stop the contraceptive pilla few months earlier as it was interacting with my epilepsy medication.  I went out and bought a pregnancy test andthe next morning took it.  It didn’t takelong for that word to appear on the screen, I was pregnant.  Part of me was so excited, we had talkedabout having a baby, not just between the two of us but also with my epilepsyconsultant in London, so it wasn’t that we weren’t prepared, it may have justhappened a bit quicker than we had expected. Then I suddenly got a feeling of worry, the seizure I had had a coupleof weeks before… how could that not have had an effect on the baby?  I remember walking in to tell Rich, I have toadmit it wasn’t that moment of intense joy I imagined, the worry of the seizurehung over me and so many thoughts about pregnancy and being and looking after ababy with my epilepsy.  But Rich seemedso happy and said if the baby had made it through the seizure it must be apretty tough baby.  Rich made me feelmore confident about it and we started to talk about the future with a babyaround.

As I was now being treated by a specialist at the National Neurology Hospital,they have an epilepsy nurse service that you can call whenever you need someadvice.  As soon as I found out I waspregnant I rang the epilepsy nurse who rang me back after a couple of hours andreassured me my seizure was unlikely to have affected the baby and made me anappointment to come and see him and have a chat about pregnancy and parentingwith epilepsy.

Next we had to decide who to tell, I took a second pregnancy test to check, I didn’twant to be making all these decisions unless I was sure but that one came uppositive just as quickly.  We decided wewould tell my Mum, she wasn’t just a mum to me but one of my closest friends, Itold her everything and she had supported me through all the years of seizuresand doctors’ appointments.  Rich and myMum had become a little team when it came to my epilepsy, I could never havedealt with it without them. Because no-one could ever tell whether yourepilepsy would get better or worse through pregnancy and having had one seizureI knew the possibility of having more seizures was very real it seemed onlyfair my Mum knew the whole story.  When Itold her she seemed happy but surprised, we were in the process of moving houseas well so it wasn’t really the best time to happen but then is there ever abest time to have a baby?  A little whilelater mum said she was just surprised I felt ready to have a baby when myepilepsy wasn’t completely controlled but she said she thought we were verybrave and that she was very happy for us and looking forward to being a Nan,not a Grandma as that made her sound old!

Wethen told my Dad, my sister Nikki and Rich’s brother Dan as they all live withmy Mum and it seemed unfair to expect my Mum to keep it from them, we also toldmy Grandad as we were a very close family and my Mum sees him every day so itmade sense to tell him especially as it would be his first greatgrandchild.  So going back to the point Imade before, my sister and Rich’s brother live with my parents, you may wonderhow that came to be… Nikki and Dan are in fact an item and have been for wellover a year now, pretty much since we got married.  It may seem a bit strange and if I’m honesttook some getting used to but it has turned out as a truly wonderful thing, wesee each other all the time and have become a pretty strong little unit.  It never surprised me when they got together;they had been practicing for a set they played at our wedding party, which wasamazing, so they had been spending quite a lot of time with each other.   We always knew they had a lot in common,they were both very creative, both artistically and musically, and justgenerally were very similar in their outlook.

I also told my friend in Switzerland, Leti, she is probably my closest friendeven though we live so far apart and I really wanted her to know.  I needed someone my age to talk to about itall with and she had had a baby about a year ago and so I knew I could ask herall the questions I so much wanted to ask but couldn’t because I didn’t wanteveryone to know I was pregnant.

I had to go see the occupational health doctor before I could return to work due to the seizure.  Understandably to keep the children safe more limitations had to be put on my role, I didn't want to put the kids at risk, but it didn't make it any less difficult for me.  It makes me feel very useless, frustrated and down that the job I chose to do I can't give my full potential due to epilepsy.  It's one area where however positive I am about my epilepsy, it will understandably have a huge negative impact on my life :(

But as far as the pregnancy is concerned, I am not going to mope around, I will work as hard as possible for as long as possible :)  pregnancy is not a disease!