Splats and Bum Wiggles

So what have we learned this week? Other than that I am rubbish at keeping my promises to post, obviously. 

1) That Mr Pop is not a good game for narcoleptics!  Little Prince has renamed it Mr Splat.
Basically, Princess Mummy got all overexcited when she saw this game.  At the Castle where I grew up, I was the champion Mr Pop player! I'd spend ages putting those little face pieces in, desperate to beat the clock before the game POPS up and flings the tiny missiles back at you.  Well now it's a splat-in-a-box. Because every time Mr Pop pops up, Princess Mummy falls down.

2) That 3D movies are NOT suitable for this particular narcoleptic! For similar reasons to Mr Pop but without the shrapnel.
Prince Daddy and Princess Mummy went to Big Town last week to see the new Mazerunner film (reviews here) 
I don't have much of an opinion of the film as yet because - without spoilers - there are a few jumpy bits which made Princess Mummy go Splat and Prince Daddy had to rescue me from face-planting my own nachos! 
We'll try to see it again- fully dosed on meds and in 2D this time and I'll let you know how that goes!

3) That as well as Princess Mummy's fabulous good looks and gung-ho attitude to most anything, Little Thug has also inherited Princess Mummy's smart mouth and inability to resist the last word. Which while he's a cute little 18 month old is kinda funny but I can see his elder years being a battle of wills. - I just hope that Prince Daddy and I can walk the line between discipline and not crushing his spirit. Wish us luck with that! 

4) And finally, that Little Prince is responding so well to his new medication for ADHD.  He's focused in school which is improving his work but,  more importantly, boosting his confidence no end. A lot of the emotional issues ended with the change of meds although they weren't listed as side effects.
So Prince Daddy and I can enjoy our Little Prince without him bouncing around like Tigger on Speed. And best of all,  Little Prince says he doesn't feel any different but "They stop my bum wiggling on its own."

And no one likes an independently wiggly bum!

A Whole New World

Well, Prince Daddy has taken both Little Princes out to Ninjas so I'm grabbing my chance to blog while I can. 

The Littlest Prince has turned life at the castle upside down, given it a good shake and put it back together inside out.  We knew we were lucky to have a "good" baby with Little Prince - slept well, ate well, grew.  Littlest Prince is doing none of the above.  Although he is drinking milk like it's going out of fashion, he isn't gaining weight as he should be and so our Health Visitor has recommended changing him onto Lactose Free milk as she suspects he may be intolerant.

 

She's weighing him again on Friday so we'll see if he's done giving us scares.  At birth he decided that breathing and keeping his heart beating wasn't quite for him and so pooped in his waters and gave up.  So as I was being sewn up after an emergency caesarean, he was rushed to Intensive Care at the Special Care Baby Unit.  I didn't meet him until he was over 24 hours old.

 

Prince Daddy took Little Prince in to meet the Littlest Prince in the evening.  He is now totally smitten with his baby brother and is thrilled to have met him before even me.

 

Little Prince spent last night reading The Gruffalo to Littlest Prince.  It was Little Prince's favourite story as a baby and he insisted on finding his book to read to Littlest Prince.  Strange how these things come back to you-both Little Prince and I could recite it from memory, having read it on many, many bus journeys, every night at bedtime and as an afternoon filler before a nap.

 

The Littlest Prince worships his big brother and gives him all his best smiles and is even-at 10 weeks-trying to laugh.

 

Narcolepsy and Newborns aren't the easiest combination to handle.  Prince Daddy and I are ships that pass in the night as we alternate looking after Littlest Prince and sleeping.  My planned naps are more important than ever with a new baby to be responsible for; and as a night worker, Prince Daddy needs at least 7 hours unbroken sleep in order to be of use to his boss.  And so we are playing Pass the Baby as children play Pass the Parcel but as you unwrap the nappy layer, the prizes aren't nearly as nice.

Elephant Length Pregnancy? Or Just Having an Elephant?

So we've had a hectic few weeks at the Mummy Household.  And all on behalf of the Littlest Prince.

Our local hospital should just give us a bed and let us sleep in - we've been in at least twice a week for various things over the last few weeks.

 

Due to Princess Mummy being overweight at the start of the pregnancy and not gaining any weight during (both of which has annoyed my doctor- just can't win!) extra baby growth scans were scheduled at 28 and 34 weeks.

 

At the 28 week scan, Littlest Prince was supposed to weigh around 2lbs- a little under would be ok.  After a lot of muttering about "generous sizes" and checking the measurements twice, the sonographer told us that our Littlest Prince would weigh in at around 4lbs or a little over!!!

 

At the look of horror on my face (I've got to birth him!) she told us kindly that a low birth weight was more concerning and that he would probably cope very well with an early delivery with very little intervention if any.  She also, on finding out that my midwife and obstetrician appointments clashed, told me to keep the obstetrician and miss the midwife so that inspired me with confidence.

 

The obstetrician gave a low whistle looking at the scan (nice) and told me she wanted to repeat the Glucose Tolerance Test because a baby this big suggested Gestational Diabetes.

 

Anyway, much to-ing and fro-ing and tests and results confirm that, yes, I DO have gestational diabetes and on Friday was issued with my own personal blood sugar monitor and testing log.  Which was a very exciting gadget til she showed me how to jab my own finger with the pokey pin shooter (technical term) then I lost interest and decided I didn't want to play.

 

So I test blood sugar 4 times a day - before breakfast for a fasting reading, then an hour after each meal which has to be planned carefully to suit sugars and carbohydrate levels.

 

As of Monday, I think I'll be summoned back in because even my fasting levels are very high and so my post meal levels are astronomical, despite following the diet plan to the letter.

 

Oh, and according to the midwife I'm already measuring at 39 weeks which explains why I'm now confined to a wheelchair to get around instead of long walks (hard to accept at first but the freedom is dizzying) and why my liver is struggling which makes me itch ALL the time!

 

At least with the GD they are looking at bringing my due date forward to mid-to late January instead of February so now at least, the end is in sight!

My Narcolepsy and Me

When people hear I have narcolepsy, their first response is usually "oh that falling asleep thing".  And to make life easier, I tend to say " yeah that's it".  But Narcolepsy, like so many other things in life, is rarely that simple.

 

Everyone has seen the "funny" pictures and memes on the internet, the videos on YouTube. People with Narcolepsy falling down.  I'm as guilty as anyone of perpetuating the myth that Narcolepsy is a funny illness that just means sleeping a bit more.

 

So here's my attempt to put the record straight and explain my Narcolepsy and how it affects me.

 

I do fall down asleep.  Let's all get that laugh over with.  This, in my case, is known as Cataplexy and in most cases is linked to my emotions.  Imagine being afraid to laugh, to cry.  Even pride or shock are triggers for me.  I cannot watch a horror film or a comedy without having someone to supervise me.

 

When Cataplexy attacks, I can suffer a number of symptoms from the mild - head bobbing, slurred speech - to the major. A complete loss of muscle tone.  A puppet with the strings being cut.  And all the time, I'm awake inside and aware. 

 

Bathing is a major pitfall for me.  How many readers enjoy a long soak in the bath? Maybe taking in a book and a glass of wine?  I've lost count of the number of times I've nearly drowned.  Taking a bath, and hearing a car door slam outside.  Or a cat fight in the street.  Or even a dog barking if I'm relaxed enough.  Each of these can be enough to trigger a Cataplexy attack which is a loss of consciousness - although inside I'm awake and screaming.  Imagine feeling the water going up your nose and into your mouth and not being able to do anything.  The more scared and panicked you become, the more impossible it is to move and the more you can feel yourself breathing in the water.

 

The only reason that I'm still here and blogging is Prince Daddy.  He has pulled me from the water, drained my lungs.  He knows what is likely to trigger an attack and the most likely effect it will have on me. 

 

I cannot drink as even a small amount of alcohol makes me incredibly drunk incredibly quickly.  So that glass of wine is out.  I also sober up very quickly, finishing a night out as though I had not drunk anything at all.  Some say this is a side effect of the medication, some say it is my metabolism.  All I know for sure is that alcohol stops my medication from working for days ahead and so drinking becomes more trouble than it's worth. 

 

Although Narcolepsy is commonly known as a "sleep thing", it is classed as a Sleep Disorder because although sleep is a feature of Narcolepsy, the quality of the sleep is very poor and not necessarily restful.  From the moment I go to sleep, I dream.  And I dream until I wake.  Non-Narcoleptics cycle through a number of stages of sleep including deep sleep which allows rest.  I do not.  And the hormone your body releases in order to paralyse you and prevent you from acting your dreams is not always there.  So I regularly act out my dreams.

 

When my body does release the paralysing hormone, it does not always dissipate as it is supposed to, meaning I can "wake", be still stuck in a dream, and unable to move or speak.  As a child these were known as Night Terrors-a precursor to Narcolepsy, if we had only been told.

 

Because my body does not always distinguish between sleep and wake, I lapse into sleep during waking hours - not always realising.  I recently blogged about hallucinating a cat.  This is one, more humorous example.  Some of the hallucinations are more scary.  Having a pet made it easier to tell truth from fantasy.  If the cat reacted, it was real. If the cat ignored it, then I was probably confronting my own dream.

 

This doesn't even touch on the dangers of Automatic Behaviour.  The wandering off, the waking up, realising I've lost 10 minutes or more of my life and done things/been places I had no intentions of.

 

The limiting that comes with having to plan a life around Planned Naps in order to limit the amount of Cataplexy attacks that may come later. 

 

Next time I'll blog about Narcolepsy and Family.  About the effect Narcolepsy has on Prince Daddy and Little Prince.  And on the people around me.

 

I just hope this helps others to understand.

Narcoleptic Nightmares

I spoke too soon.  I know I did.  I even said I was speaking too soon in my last post.  But I did it and this week I have paid.  And paid.  And paid.

 

I have not had an easy week this week.  Every night I've woken up from the worst nightmares.  Cold sweats, the lot.  And trust me, a Narcoleptic Nightmare is scary.  We can't always tell real from fantasy - which isn't as much fun as you might think.  In fact, there should be an age limit, a really tall height bar and, hell, a maturity test before you're allowed to wander through my subconscious.  It's got to the point now where I'm actually a little afraid to sleep and when I actually do sleep, I act out my dreams and wake as tired as I went to bed.

 

As a result my days have been as bad as my nights.  I've been running slower and laggier than a 1980s PC.  Seriously, anything that needs doing? Ask Prince Daddy cos Princess Mummy is just not functioning. 

 

Another fun side effect of severe sleep deprivation is the increase in periods of automatic behaviour.  For non-narcoleptics, that means my brain is taking a 5-20 minute siesta without telling the rest of me.  So I carry on doing whatever I was doing before sleep.  Saturday, that something was eating grapes.  So I carried on eating grapes - until I'd eaten damn near the whole pound! I also missed a big chunk of what I was trying to watch on TV and was as sick as a dog.  (Eating a pound of grapes in a sitting will do that to you!)

 

Last night I had my first full night's sleep in over a week.  Woke up this morning feeling tip-top.  Took Little Prince to school - all of a 5 minute walk away and continued to prove my fineness by having a splat in Tesco.  So, one good night's sleep does NOT conquer all!

To update from last week's post, I met with the Anaesthetist at the hospital.  He was quite excited that I was his first Narcolepsy sufferer in 30 years of practice.  Vaguely disturbing.  He had, however, thoroughly researched Narcolepsy, Cataplexy, and their effects on Pregnancy and Labour.  He is quite happy for me to try for a normal birth which was good news as some people in my Narcolepsy group reported that their consultants etc had pushed for a caesarean section under the heading of "better safe than sorry." 

I don't know if I should be happy or scared that, as my obstetric team have no experience of Narcolepsy, they are happy for me to make all the decisions and call all the shots.  So much responsibility on my little - nonmedical - shoulders.  Still, I assume that if anything was to go wrong, or I were to suggest anything outrightly dangerous, they'd step in.  Right?  Right? Um.....

Sex? Yes Please!

Princess Mummy has had her 20 week scan and everything is going great guns.  The Nugget has been checked and has 10 fingers, 10 toes, 2 matching arms, 2 matching legs, a beautifully functioning heart, spine etc.  Oh, and a Willy!!!

The Nugget is now officially to be known as the Littlest Prince. 

So much for this bump "feeling" female! (although I was hoping for a brother for Little Prince.)   We have dithered somewhat on names - the first name we chose we weren't completely sold on and, when the radiographer told us we were the seventh person with that baby name that week, we felt that the Littlest Prince couldn't possibly be one of the crowd.  So we went to our backup name.  Which was also the name of Queen Nanna's dog which passed away 2 years ago.  So; back to the drawing board. 

 

Out came the Modern Book of Baby Names - offering such gems as Ethelred, Cuthbert, and Mehitabel.  But seeing as we do love our Littlest Prince, we went with something more traditional and less likely to get him beaten up in the playground.  We asked Little Prince for his choice of names, but rejected Optimus, Ratchet, and Ultra Magnus for the same reason Mehitabel didn't make the cut.  Although Prince Daddy maintains that Optimus might well be the coolest kid in the playground.

At risk of speaking too soon, this pregnancy - narcolepsy aside - has gone like a dream.  The worst I felt was doing the drugs withdrawal thing which passed (eventually).  Since then, I have cruised through - although a lot of credit should go to Prince Daddy who has gone over and above the call of duty in terms of housework/supervision etc whilst Princess Mummy has reclined on the sofa indulging her cravings for salt. 

Which makes my non-existent weight gain a bit of a mystery.  As I now weigh LESS than I did at the start of the pregnancy, my consultant is insisting extra scans are the way forward.  Although it's a little hard to put all my faith in him at the moment.

When my midwife told me she wanted me to see the Medical Conditions Consultant because of the narcolepsy, I was a bit nervous.  More nervous when he told me he'd NEVER had a patient with narcolepsy and proceeded to google it in front of me.  Tomorrow I'm meeting the head consultant who, I hope, knows a little something about the condition, otherwise I'm taking myself and bump off to Narcolepsy Clinic and having the baby there!!!

Finally Feeling Real

So I've now hit the 20 week mark and am finally starting to feel like this pregnancy is a real thing that is really going to happen. 

 

From the first day I found out, I was afraid that November might repeat itself and that I would lose my last chance to be a mother for the second time.  Prince Daddy and I agreed that, no matter what happened, this would be our last attempt.  Losing our baby once was so very hard; if it happened again we wouldn't risk going through the pain for a third time.

 

Plus, being pregnant and suffering narcolepsy is hard!  The moment it was confirmed, I had to stop taking my Modafinil and Clomipramine.  Like, dead stop.  Cold turkey.  And boy it was not a good time!!! Sweats, chills, hallucinations, you name them I suffered them and am determined never to do that again! When my GP said it would be like the withdrawal from cocaine, I thought she was exaggerating.  If she was right, I've just found yet another reason not to play with recreational drugs.

 

Now I'm officially half way through my pregnancy and I'm hoping to find the second half a bit more bearable.  Although I still can't take any of my meds - the lack of which I'm really feeling - I know I'm on the home stretch and I have a finite period of time left that I just need to get through. 

 

Princess Mummy is looking proper pregnant now! I have a ginormous bump and can feel The Nugget moving inside.  From flutters and bubbles, this week we have graduated to full kicks and wiggles which are unmistakeable and are helping me, finally, to truly feel like this is a real thing which is happening to me! 

 

I thought the 12 week scan would be enough to help me accept this was real, but, although I could see the scan and knew the baby was there, I suppose some sense of self preservation stopped me getting attached.  Now, however, I cant wait til our 20 week scan.  Which is Tuesday.  In 3 days time I get to meet our Nugget and find out if we're having a Nugget or a Nuggette.

Little Prince was adamant we weren't allowed to find the sex of the baby - until he realised that once we have a gender, we can go about picking a name.  Now he can't wait to know if he's having a brother or a sister.  He's already (using the tried and true method of asking me 10 minutes before the alarm went off) got me to agree that as soon as I have the scan, he can have the picture to take to school to show his class.  

So, to sign off on a prediction: I have a feeling that this baby will be a girl.  When asked what we want, Little Prince always answers "A Transformer".  Prince Daddy and me say a boy would be easier so that he and Little Prince can share a bedroom.  But this bump, for lack of a better word, feels female. 

So when I blog again on Tuesday, I'll either be very smug or be typing here with egg on my face.  Who knows?

Sports Day and Other News

Little Prince's School held their annual sports day last week.  As he is still in the infant section, they don't do formal sports but have 35 stations around the school field where the kids rotate round and do little events.  Such as the rugby "try", the bunny hop, shooting basketball hoops etc.  It was a joyful shambles. Half of the younger kids kept wandering off and having to be rounded up by the leaders.  The older kids had set up the events and the "jumps" etc were spaced too far apart for the miniatures to jump in one leap.  The queue system fell apart quite early on as all the kids wanted to have a go and sundry calls of "Jo-fish" and "Welly-ottt" were heard. A lot. 

 

The whole day was an incredible success.  The day was well supervised and the teachers and children gave their all.  Parents and kids had a great time and winners were declared by house colour.  The only formal race that was run with winners was the 60 metre race which was run in heats.  Even though Little Prince was spectacularly bad at all of the events bar the bunny hop, he had a great time and everybody was upset when 3 o'clock came round and hometime was declared.  Little Prince's sports day was so different from the sports days of Princess Mummy's youth.  Maybe it was the fact that it was an afternoon instead of the whole day.  Maybe it was that the event was planned for May instead of mid-July, or maybe it was because the teachers were so enthusiastic and engaged that the kids couldn't help but be sucked in. 

 

In other news, Princess Mummy has started Weight Watchers.  Last April I climbed on the scales and the numbers went up, and up, and up.  So, when Prince Daddy broke his leg, and I had to take care of him, I was thrilled to see the weight drop off.  But then it stopped.  Then it crept back on again.  And so, finally, I took matters into my own hands and dragged my sorry bum to WeightWatchers. 

 

Honest to Goodness, I've never eaten so much food in my entire life.  Instead of the whole "eat less, move more" mantra, I've found myself eating better.  Tonnes of food, but better quality.  And 3 meals a day!  I haven't eaten 3 meals a day since I was 18 and moved out of Queen Mummy's house. 

 

Being in WW has caused me to reconsider how I treat food.  Prince Daddy has always said that my relationship with food is downright unhealthy.  And now I'm starting to see what he means.  Apparently one meal a day is not healthy.  Ok, one meal and a giant bar of chocolate. 

 

Yesterday, for example, I ate 2 poached eggs on toast, a baked potato, pasta in cheese and tomato sauce, mini biscuits, a banana, and some grapes.  And still, at first week's weigh in, I lost 3 1/2lbs.  How does that even work? 

 

I'll keep you informed whether it works again this week.  Keep everything crossed for Wednesday's Weigh In.

Stockholm Syndrome - Induced by a Professional

I'm living in a dictatorship and sadly, I don't seem to be top dog.  This is not how my life was supposed to happen.  I was gonna be large and in charge and run my house like a military operation.  Iron fist in a velvet glove and all that.  Except real life isn't as easy as the fantasy.  And motherhood isn't as easy as Queen Mummy makes it look.  So, really, it's all her fault for doing it too well.

 

Anyway, the despot in question is 4 foot tall and 3ish stone. And totally without mercy.  Seriously.  A career in Gitmo is in his future.

 

I think I might have developed Stockholm Syndrome.  Little Prince has been testing the theories in his the Sleep Deprivation / Rewards for Good Behaviour portion of his "Dictatorship For Beginners" book.

 

Granted, he has a head start running the sleep deprivation ruse on a narcoleptic but there you go.  Every day for the last week, I have been woken between an hour and an hour and a half before the alarm.  With kisses and cuddles.  Little Prince has a lot on his mind and needs answers.  Now.

 

So the big questions of the week are as follows:

 

What does snail poo look like?

 

Why don't snake's willies fall off when they slither on the floor?

 

Why do penguins "wobble" instead of walk?

 

(The answers, by the way, are white strings, they're tucked inside the snake until they need to be used, and because their legs are short and their bums are big.)

 

After the most recent wakeup, Prince Daddy and Princess Mummy held a summit meeting.  We decided to explain to Little Prince that Princess Mummy needs unbroken blocks of sleep.  That waking me up is ok if it's important, but other things can wait til alarm time. 

 

Little Prince listened, took it in, gave me tons of kisses and cuddles and it all seemed to work.  Four clear nights.  Until this morning.  At ten past six a small shadow slipped into the room and between the covers. 

 

"Mummyyyy...?"  (kiss)

 

"Grugh!"

 

"Mummy, its important.  I can't sleep and I need to talk to you." (kiss, kiss)

 

"Grugh!"

 

"Mummy!  Why aren't hearts heart shaped?" (kiss)

 

"WHAT?!"

 

"Mummy." (kiss) "Just google it for me and then you can sleep."

 

Fail!