I have had absence seizures since about 17 years old, we don't know why they started but one day as I was locking my bike up at college I wondered how I had got there. I'm sure there were other things that happened that made me go to the Dr but my memory is bad and I don't remember them now. I remember seeing the consultant at the hospital and having an MRI scan and being admitted for what is now called video telemetry (it was called a cassette EEG in 1996). I remember staying in hospital quite clearly and was hoping I would never have to be admitted again as I did not enjoy the experience (old hospital, horrible food, toilets that didn't lock, that sort of thing).
My absence seizures at the moment happen about 4 times a week, sometimes I can have about 6 in a whole cluster almost one after the other until I have a nap. Others it's a one off and I'm back to normal except for missing the 30 seconds to 4 minutes that I have been having a seizure. I don't fall to the ground, I just stop what I'm doing for a moment, some people don't even know I'm having them if they are short. I'm aware of what is going on around me, I can put a book mark in the book I'm reading or go find a seat to sit on. Sometimes one or both arms will shake but its not a whole body violent shaking.
I was put onto carbamazepine in 1997, this worked fine for a good number of years, I was happily seizure free but slowly over time they appeared again so in 2004 I went back to the Dr and referred again to the consultants, it took seeing a number of different registrars for me to convince them that I had become immune to my tablets but got there eventually. In 2005 I was put on lamotrigine and was again seizure free for some time. I was on lamotrigine whilst pregnant and had a very healthy little girl, Princess C. Until 2009 when again they returned and referred again. I saw a great registrar (a good one makes a huge difference after all the rubbish ones I have seen) who really listened and instead of increasing meds switched me to keppra and again my seizures stopped. That is until 2012 when again they came back. My Dr increased meds due to the low dose I was on but this made no difference so early 2013 I was back to the hospital and saw a new consultant. She is really excellent and decided that we will go back to the start and have the tests retaken but add in a new tablet, vimpat, on top of the keppra.
Sadly the vimpat just did not work for me, it made very little difference to my seizures and the side effects were dreadful, I don't know how I made it through some days I struggled with talking, finding words, I had no want or desire to do anything and made mistakes on some of the easiest tasks. After a few desperate calls to the specialist epilepsy nurse at the hospital I came off vimpat.
So this year I have had another MRI scan and went for an outpatient EEG (they stick metal disks to your head and measure the electrical activity). Sadly the outpatient EEG didn't give the consultants quite the answers they were looking for so in August I went for an impatient VEEG (video telemetry). Thankfully I managed 6 seizures over the 5 days I was in hospital for and so didn't have to stay in any longer, and the experience was so much better than last time. The west wing at the John Radcliffe Hospital in Oxford has purpose built rooms and wonderful staff. It's not fun having disks stuck on your head for 5 days and being videoed 24/7 and not being allowed to leave the room but hopefully if the results are good they will be able to find me a better medication.
This blog post explains really well about what having a VEEG is like with photos.
It's still a waiting game, I'm still on meds that don't work, I'm now waiting for an appointment at the memory clinic and will hopefully see my consultant in a few months to see where we can go from here. Being a female of child bearing age also makes a difference to medication, I've done the "safe" medicines so now the options left are those that are untested or not suitable for pregnancy so epilepsy has made the decision for us to only have one child. A hard one to accept at times.
So how do I cope as a mum, I just do but with a lot of support from family. I don't let it rule my life and I try not to let it stop me doing things. ReaditDaddy and I have always been open with Princess C (who is 5) about my epilepsy and both of them can tell when I'm having even the shortest of seizures, as Princess C has got older she has understood more about letting me rest when needed or taking something off me if I'm holding a cup for example. It's rare for me to have them outside of the house or office. It's like something inside me will hold them off until I'm in a safe place... not always though. The hardest thing I find is not the epilepsy it's self but my memory. Events and conversations new and old that I just can't recall. I can't drive and probably find this the most frustrating bit (which means I rely on ReaditDaddy and buses a lot), I shouldn't really go swimming by myself or with just my daughter. But I often think of the things I shouldn't do after I have done them!
Wednesday, August 28, 2013
Tuesday, August 20, 2013
|Thankfully no houses were burgled / bricks hurled during the making of this blog post|
So for most of the day and the entire evening I had time to myself - which is a rarity and not always a welcome one. After spending a lot of time sketching and drawing, and doing household chores (any man who tells you that they lounge around in a deckchair watching sport wearing just a pair of pants has never been on the receiving end of his better half's wrath when she finds out he's done "absolutely sod all" while she's been away!)
I missed my girls. I missed the house feeling lived in, noisy, messy but most importantly feeling like our family home rather than just some place I'm living in.
It's also hell on my diet. As it's just me for most of the week and Princess C will be eating at her grandparents for three of those days I didn't shop - which meant hoovering up whatever food was left in the cupboards and freezer (not a lot!) so I made too much pasta sauce, ate too much pasta and polished off a stack of jaffa cakes that were about to go out of date. Bleugh.
Time alone might sound like a delicious luxury to some folk but to me, it's just weird now. Not right without Mummy and C.
Wednesday, August 14, 2013
Stupid idiot things that you think are hilariously funny at the time, but will bite you squarely on the arse #1: Nightmare Cheese
|The white bits are safe, the blue bits give you nightmares. FACT!|
Now, picture the scenario where you - the ardent cheese lover - try to convince your child (in this case, Princess C) that "Veiny cheese gives you nightmares" and the blue bits are the worst for doing so.
Amazingly enough I never had to beg or plead with Princess C to get her to eat anything weird like Blacksticks Blue or a really good piece of stilton. She just does but oh yes, that nightmare cheese thing really did kick me (or rather my poor long suffering other half) squarely in the pants. I put Blacksticks Blue in Princess C's packed lunch yesterday. She ate it, enjoyed it, but the closer we got to bedtime, the more apparent it became that I'd done something really stupid. No not necessarily putting the cheese in a sandwich for her to eat, but starting off the whole nightmare cheese thing ages ago only for it to 'pay out' some way down the line.
First she bellowed for me to come into her room shortly after we'd put her down for the night.
"The nightmare cheese made me dream that there's a skeleton in the middle of my floor!" she said (not ten minutes after we'd closed the curtains and turned out the light, and the little blighter hadn't even been asleep).
I switched on the light. No skeleton. Tucked her in and kissed her goodnight. Again.
Then of course at 3am Princess C had the mother of all nightmares, and woke up wailing. My wife dutifully went down to her but there was the unspoken promise that because I'd 'slept through it' (I hadn't, but it wasn't my turn for the night-time thing) I would be made to PAY later on...!
Of course, it now means that Princess C has shot herself in the foot as well as making me look like a terrible dad who doesn't know when to quit on a joke. She'll never experience the tangy melting deliciousness of really good cheese ever again during her childhood because I'm durned well not going to carry the blame for any more nightmares. She'll also never get to watch the rest of the Harry Potter movies (they've recently been airing on TV over here, and I bought a box set to finish them off - but as the series goes on, it gets darker and darker, and more harrowing - so that little avenue of enjoyment will also be cut off just in case...)
Random nightmares will come and go, undoubtedly - and it's impossible to shut off a kid from everything that might scare them during the night - but stubbornly I'm going to dig my heels in. No more nightmare cheese, no more monsters before bedtime. That way at least I won't get the blame!
Monday, August 12, 2013
|Meet the veggies, meet the veggies...they grow here in my nursery!|
When I fell pregnant we both decided that our child would be brought up as a meat eater and they can make up their own mind as they get older as to what they would like to be, I didn't expect that to happen at the age of 5 though.
Princess C has up to now always enjoyed dinner at her grandparents and happily eaten what ever has been put in front of her. At home we used to buy sausage rolls or ham for sandwiches. But over time she has slowly gone off one item after another. First sausage rolls, then chicken, then ham and now its a struggle to get her to eat any meat, telling us that she is vegetarian. This is the girl who until a few months ago would eat chorizo and peperoni, anything with a bit of flavour to it.
She also won't eat meat substitutes like quorn or tofu either telling us that its chicken. Give her veggie sausages and shes worried its meat and so is a bit wary even of those.
She is mostly a good little eater, we haven't had too much trouble there thankfully but this decision has stumped us as we weren't expecting it to happen so early. Now we are left wondering where to go with her decision. do we try to offer meat to her where we can or accept that she is now a veggie too and only offer her that option?
Daddy's take on it
We've seen some amazing examples of kids going off the rails with food and we always strove to ensure that Princess C would be exposed to lots of interesting food. Quite often I'm the one who prepares meals so with a fussy eater (mummy) and now a fussy would-be vegetarian (Princess C) my work just got that much harder. What worries me also is that we're going to find the going even tougher when she goes back to school - particularly if we opt back in to school dinners (as the only sandwich filling she'll now eat is tuna, and you can't just eat tuna every single day can you?)
There are a ton of interesting food options available to vegetarians but when you get home at night and literally have about 10 minutes to get something together before bedtime, it's no fun at all. Mummy bloggers who convince you that it's all so easy to do all your baking and making at weekends, freezing everything ahead so you can just pop it in the microwave and serve up interesting meals just have no idea what the average weekend is like when both parents work a full working week, and have to cram in all the other chores into a weekend.
So no doubt, I'll be trawling recipe pages and suggestions for quick stuff, and by the look of things, we're going to be in serious hot water if we try to visit other countries that think 'vegetarianism' is some new fad that will never quite catch on.