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!