A Post by Prince Daddy

Princess Mummy is taking a short break from blogging due to a broken scaphoid and a recurrence of severe narcolepsy symptoms.  She will try and come back in the new year.  Apologies to all. 

Prince Daddy

Pride coming AFTER a fall

There are times I am so very proud of Little Prince, yet at the same time, so sad for the responsibility he has taken on.

Princess Mummy and Little Prince spent yesterday at Queen Mummy’s house and took the early evening bus home.  Princess Mummy was struggling to stay awake on the journey and so called Prince Daddy to meet the bus.  Prince Daddy has been known to flag the bus down and physically shake me awake before today.  It’s the only part of a journey I do unaccompanied.  Big Sister puts me on the bus and Prince Daddy meets me off.

Prince Daddy advised me to get my medi-tags out in case I did drift off.  As I wrapped them round my wrist, Little Prince took my phone from my pocket.  “Mummy sleep, I answer”.  I let him have it.

Around 20 minutes from our flat, I called Prince Daddy and gave him our eta.  I was already struggling to stay awake, and at some point, lost consciousness.  I was awoken just a few minutes from our stop by Little Prince stroking my face and kissing me.  “wake up Mummy”.

He pressed the bell for our stop, and seeing Prince Daddy, said “Mummy needs help”.

Prince Daddy helped me off the bus and I walked home, flanked by the two men in my life. 

Sometimes I worry about Little Prince.  I had a cataplexy attack last week which I couldn't rouse from.  He grabbed my mobile and hit the green button until he reached someone (Queen Mummy) It was only on telling Prince Daddy that we realised he had tried Prince Daddy first, then managed to scroll through last dialled.

When I had an attack with just him, Queen Mummy and me present, he wouldn’t allow Queen Mummy to take care of me.  He sat next to me, stroked my hair and said “it’s ok Mummy, I’m here.  You’re ok Mummy”.

Everything he knows, Little Prince has learned from Prince Daddy or does instinctively.  He is never asked to do anything, yet does so much to help out.  Although he is not 3 until January, Little Prince is so mature. 

Can someone remind me of this when he’s in his teens and I’m begging him to grow up please?

I’ve changed my mind. This diagnosis sucks!!!

I’ve not written for a few days as I’ve been getting my head around some pretty serious stuff!!!

Since I was 16, I’ve been one of those people who fall asleep.  Anywhere and everywhere!  It’s been a running joke in my (few) friendships and Prince Daddy was on the rota in college to make sure I was awake for my next lesson.

Since the birth of Little Prince and my subsequent Pneumonia and Pleurisy, I have suffered collapses.  Both total blackouts where I lost consciousness and “grey-outs” where I lost control but was still aware but woozy.  I have been back and forth to my GP who was adamant I had Chronic Fatigue Syndrome (M.E.) or depression.

In desperation, I saw a different GP at the surgery who recommended me to an ENT specialist who in turn recommended me for an overnight sleep study  and MSLT at the Walton Centre in Liverpool.

4 months ago, I went for the results with The Doc who was, I felt, the first person who really took me seriously.  Even the doctors that had referred me were doing it, in part, because I was demanding answers rather than because they felt it was necessary.

In that appointment, The Doc sat and read my history.  He looked at my results and initially diagnosed Idiopathic Hypersomnia.  This just means “excessive sleepiness, cause unknown.”  He prescribed stimulant tablets to stop me blacking out and recommended I look up Narcolepsy as he suspected that would be his ultimate diagnosis.  As far as I was concerned, this was fine - the ENT doctor had already told me something similar. 

On Monday we met again to review the medication.  The stimulants do stop the blackouts, but the “grey-outs” have not changed.  On telling The Doc this, he nodded.  He had expected this.  He diagnosed full Narcolepsy with Cataplexy and advised me that there is no cure, and people do not spontaneously recover.

Although I gave up my driving lessons when I first started to collapse, I now had to surrender my license to the DVLA as it was unlikely that I ever could drive again.  Unlike epilepsy, which has a seizure free tariff of around 2 years, narcoleptics must be totally cataplexy free for 7 years before reapplying.

I would never be able to drink again as the alcohol would deactivate my medication for some time to come.

And I could never give blood again.  Apparently it can bring on Cataplexy and makes more trouble than it’s worth for the blood donor people.

Although I was fully expecting this diagnosis,  I did not realise how hard it would all hit me.

My blogger profile already says I suffer from Narcolepsy.  I chose to say that as most people find it easier to understand than IH.  My immediate family and closest friends also know the score, but most people in my life do not know.  I suppose I haven’t told them as I was waiting to be proved wrong.

Narcolepsy will be with me for the rest of my life.  That also means that this is also a life changing illness for Prince Daddy.  And, to a certain extent, Little Prince.

Whereas we had dreamed that “one day” I would get better and life would be normal again, we now have to face up to the fact that this is it.  My symptoms might never be as tightly controlled as I would like and we may have to give up the idea of another Little Prince or Princess.  (The drugs I’m on are not approved throughout pregnancy)

I will still have to be accompanied whilst outdoors until the cataplexies are under control-which in effect, leaves me housebound unless someone is with me.  I will be limited as to the work I can do – if any employer will take on a narcolepsy sufferer.  I have years of office, shop and call centre work experience, but I cannot be left alone in a shop or do a high stress telephone job.  I’m all for equal opportunities in the workplace, but I understand that the best candidate should be offered the job .  And if I keep falling asleep, I cant be the best candidate for many positions. 

Now that it’s had a chance to sink in, I’m back to the bright side though.  This isn’t a life threatening condition.  I can still live and live a good life.  I just need to be more aware of my personal safety.  I need to be less embarrassed about people knowing I’m ill and actually wear my medi-tags!  Because of my automatic behaviour (brain asleep body awake) people need to check I’m actually awake before having a serious conversation.  And little things like keeping the door key out of the lock (so i can’t just turn it and walk out) need to be remembered.  I also write things down as i go as my short term memory is somewhat sieve-like.

Apparently one in 2000 people in the UK suffer from Narcolepsy in some form, although many do not know it.  Some people just are sleepy people who drop off easily.  Some are in the middle where cataplexy manifests itself only as slurred speech and drooping head which disappears a few minutes later.   And some are like me.  Where they have all the above and full drop cataplexies.

Oh, and the only UK support group has a £10 per year subscription per person!  Talk about profiting from illness!

Laughing at the afflicted

The Castle now has an invalid in residence on the couch, moaning gently in pain.

Prince Daddy had quite a bad accident yesterday on his bike and his loving wife was not terribly sympathetic.  On his way out of the door to work, Prince Daddy wiggled his back wheel, commented it was loose and decided to fix it “later.”  100 yards down from our house, the wheel and bike parted company and Prince Daddy and the kerb made acquaintance.  Forcefully!

Prince Daddy brought the bike home and set about walking the 3 miles to work, albeit with a limp, the sound of my sniggers ringing in his ears.  Several hours later, his slightly more sympathetic boss, noticing his leg was swollen to the point where his trousers were bulging, whipped him into her car and off to the local A&E.

Many hours later, the aforementioned boss brought Prince Daddy home with the instructions to stay away from work for the next 3 days.

In the fall, (leg meeting road) Prince Daddy’s kneecap parted company with Prince Daddy’s knee and now the two have to be bound together until they make friends.

Little Prince is very impressed.  He is loving playing doctor with a captive patient and the knee is receiving lots of kisses.  Doctor is also demanding cups of tea for the invalid.  He approaches invalid, wakes him up with a smacked face and a kiss (tough love) asks if he wants tea then drags Princess Mummy off insisting I make tea for Prince Daddy.

I fear one of my Princes is taking advantage.  As Prince Daddy was putting his tea to his mouth, Little Prince shouted “stop”.  Two pairs of identical eyes look into the cup then met mine.

“I think this needs a skit mummy.  Shall we lets have skits?”

With a sigh I went to collect the biscuits. 

“Daddy only likes chocolate” shouted the most demanding doctor in the world.

Santa Claus is coming…

Little Prince met Santa Claus for the first time EVER yesterday! 

Well, when I say "ever," there was the time 2 years ago, just before his 1st birthday when we encountered a Santa who scared him so much he cried and vomited everywhere but we don't count that! (Little Prince cried and vomited, not Santa)

Yesterday was Little Prince’s first visit to a grotto to see Father Christmas and tell him how good Little Prince had been all year.

So we duly trekked into Wrexham town centre to see the grotto and we were pleasantly impressed.  In the centre of Queens Square, behind a “Sky" van and nestled close to the Christmas tree, was a little wooden two room shed.  The porch was wreathed, the windows painted in snow, and a sneaky peek through revealed the kind of sitting room only seen on the cover of our “Night Before Christmas” book. 

A discreet sign outside said we had to go into the tourist information centre next door to buy tickets as Santa was a busy man and didn’t like to forget anyone. 

We gave Little Prince’s name on purchase, and by the time we reached the grotto again, Santa was waiting to greet Little Prince.

Little Prince is very shy with people he doesn’t know, and especially men, but Santa had him talking 10 to the dozen in no time.  He found out Little Prince would like Play-Doh (red) and a Thomas the Tank engine, (blue) and (due to a clever arrangement with the elves where I would nod if a present was likely) promised to deliver accordingly. 

Santa posed for a photo with a beaming Little Prince, and on the way out, thrust a present into a hot, trembling little hand “to help you remember to be good”

The Noddy book was worth the £3 admission alone, but to see Little Prince’s face as he sat in the grotto by his hero, and hear him tell everyone he met afterwards how he’d met Santa was totally priceless.

Over the last 20 years, Christmas Magic has faded a little in the Castle.  It started to return as Little Prince grew, but this year?  Meeting Santa Claus sprinkled Christmas Magic over all of us.

Childhood Demons Confronted

Yesterday my brave soldier had to go to the dentist.  I made him breakfast in his special bowl, sent him to brush his teeth and ironed his favourite clothes.  On the bus, I reassured him I would be waiting right outside and would go in if he needed me.  As he went in, I promised soft boiled eggs for lunch. 

Seeing that sad little soul go through the dentist’s door, I had to clutch Little Prince for comfort. 

Smiling through the tears

Yesterday was quite a sad day for the Mummy clan.  It was GrandKing’s birthday and so we went to the crematorium in Anfield to visit his grave.  Princess Mummy, Little Prince, Queen Mummy, GrandQueen and Princess Mummy’s Littlest Sister.  We took flowers, and GrandQueen took a tiny poinsettia to plant for Christmas. 

A Play Day

Princess Mummy and Little Prince have had a very busy day today.  Up early as Prince Daddy had an early shift, we then napped for most of the morning.  Or at least one of us did!  I purposely didn’t take my stimulant tablets so we could cuddle up.  Not as much fun as you might think!  Little Prince might be affectionate and snuggly when awake, but asleep he claims bed with all the grace and compassion of a gang claiming new turf!

A lazy weekend

Princess Mummy owes everyone an apology! I haven’t been writing for a few days because losing my voice heralded the start of a cold. This meant the Narcolepsy kicked in for some reason and I kept falling asleep at random times. In the middle of conversation, or during dinner for example. I was forthwith banned from going on the stairs alone

A very quiet entry

Princess Mummy is decidedly grumpy and has no voice today.

Who's punishing whom?

Discipline has taken a look into the castle and run screaming in the opposite direction!