Lily and the hospital

Today can be described in one word - blindsided.

It was Lily's sleep study follow-up appointment today.  After we all met up last week, I was feeling hopeful about the hospital appointment.  From everything that she said it sounded as if the doctors were finally beginning to use the word narcolepsy as a possible diagnosis.  Her thyroid had been tested and she had been referred to a fibromyalgia consultant who suggested that it may be sleep apnea or narcolepsy.  Hence the sleep apnea study.

I've never visited this particular hospital before, it's relatively new, very fancy on the outside, light and airy on the inside.  We arrived 15 minutes early for the appointment and I was impressed when Lily was called 10 minutes early.  I was introduced as a friend who was giving her some support.  Her consultant began to discuss the results from the sleep apnea test, negative, then I was impressed as he began to ask her the right kind of questions.  The kind that shows that he is considering narcolepsy as a reason for her E.D.S.

Lily sat and explained the very best that she could (through the sleep craving) what her day to day life was like.  How she remembered fighting off the urge to sleep while in high school.  How her need to sleep had steadily increased.  What a normal Lily day is.  Single parent.  Two young children, one on the autistic spectrum, both at school.  Her day starts at 7.30.  School run, do a couple of small errands, home by 10.30am, asleep by 11am (or if it's a really good day she can last until middday), alarm set for 2.45, school run, heat something up for them to eat because she has no energy and then bed around 11.  She explained that there is a short period during the evening that she feels a little bit more awake, but only if she has been able to have a nap that day.

He asked what happened if she was unable to nap over the space of several days.  Did she ever just fall asleep/unconscious without warning.  At the time, I assumed that he was ignorantly referring to cataplexy, as it was quickly followed up with him asking if she ever woke up unable to move while she was asleep.  She answered no to both but mentioned that she has very vivid dreams every time she sleeps.  That she had restless achy legs as she falls asleep.

Up until this point, I had been able to give Lily little pointers about the things she wanted to discuss with the consultant because she easily forgets what she wants to say or is unable to get her point across because she is so tired.  I don't just mean that she is physically tired, I believe she's mentally exhausted from continually trying to explain to doctor after doctor how tired she feels and getting absolutely no-where.  Up until this point, i was still hopeful (albeit rather less than before) that the appointment was turning out to be pretty positive. 

I've forgotten to mention here that I went to university at one of the top psychology departments.  My reason for study was to understand how the brain worked on a nuerological level. Ultimately I wanted to study at a university with a proper department dedicated to sleep study, but the nearest place was a 2 hour commute there, a two hour commute home.  Not really possible in my circumstances.  So every semester I picked all of the neuropsych and computational neuroscience subjects available.  My final year dissertation was heavily neuropsychology led.  I was so priviliged to be involved in an fMRI study.  I was actively involved in a control case scan, and given a side project of my own to collect, analyse and compare data from.  Shown how to use highly specialized computational software.  It truly was an opportunity no other undergrad had been given that year.

I also forgot to mention any of that to the consultant today.  It's not like I don't have the ability to talk to them in their own language.  I've lost count of the amount of times I have went with my husband to see his doctor/consultant, armed with the latest research about why my hubby should be trying a particular cataplexy med instead of what he was prescribed etc. and they had listened.

The sudden relevance to the university stuff???   When the consultant asked Lily to describe her bedtime without a word from me, he began to ask leading questions, something I understand to be pretty devious. He grasped on the fact that her short alert times occur at in the evening if she has napped.  Was she able to fall asleep easily every night?  Lily answered truthfully, no not every night, sometimes she falls asleep very quickly, sometimes she lies awake for a couple of hours.  He made his main focus about the nights she didn't manage to fall asleep straightaway.  Not once was she asked how many nights she felt like this, compared to how often she fell asleep pretty much straight away.  It had been made clear to me that he only wanted to hear from Lily.  I sat on one hand and clamped the other firmly over my mouth.

I did a quick mental recap over things that had been said while they talked.  The fact that there is a very obvious sleep problem was undisputable.  Is it narcolepsy?  I don't know, I'm no expert, but I knew the restless leg thing, the vivid dreams and the need to sleep excessively daily are all warning signs that every doctor should be aware of.  I was drawn back to his question about falling asleep without warning.  Had he been trying pretty badly to describe a cataplexy attack or was he under the delusional image of narcoleptics falling asleep face down in their bowl of soup.  If Lily does have narcolepsy then it's most definitely without cataplexy.  The E.D.S, fragmented night sleep, vivid dreams and restless legs are definitely pointers towards narcolepsy.

I'm so gob-smacked over what happened next that I can't remember the exact order of events.  I think he said, 'well, Lily, from everything you have said to me today I really don't think that you are showing any signs of narcolepsy'.  I lost my ability to stay silent.

"I dispute that. I agree she doesn't show typical signs of narcolepsy but she is showing 4 clear indicators", I piped up. "Oh I'm sorry, I didn't realise you were a doctor", he replied. Although the anger was building up inside me I calmly replied that no, I wasn't a doctor but my husband has narcolepsy and I'd done extensive research into the disorder. The friendly consultant pointed out that my husband is one narcoleptic, he had seen hundreds of them in his career and done his research too. I sat there, his words stinging in my ears, completely taken aback. He then turned back to Lily. He agreed that she might feel tired but he did not believe she was as tired as she was implying. We exchanged the same stunned expression as he carried on. "No Lily, what I believe is wrong with you is that your sleep pattern needs adjusting. You sleep through the day, therefore struggle to sleep at night which means you feel tired the following day.

He explained that he would send Lily for a blood test to rule narcolepsy out and arrange a sleep resistance test. A blood test? Yes, to test for HLA markers. But Lily isn't showing any signs of cataplexy, will the HLA test show anything if she only has narcolepsy, I asked. "Of course it will", was the reply.  By this point I was seriously beginning to doubt myself and my sanity.  I was tired.  I am so annoyed that I forgot to mention the university stuff now.  I'm so annoyed that I allowed him to make me doubt myself.  Lily asked what would happen if the tests came back as inconclusive.  She would be referred to one of two hospitals, both a fair distance away, for a polysomnygraphy and MLST.  I asked if the local hospital where my husband had those tests still did them.  According to him, they never have been able to conduct either test.  I asked about the other local hospital, again thinking I must have got it wrong.  Again he claimed that hospital has never done the tests.  Besides, he told us, they have no sleep specialist available at either hospital.  I hope he heard the sarcasm in my laugh when I told him that I was already aware of that.

I asked him that if he agreed that Lily was suffering from EDS was it possible to give her medication to help her stay awake through the day.  We were told that only one medication was available for EDS and it's nothing more than a supercharged caffeine like feeling, so there was no point.  Now, I don't know what other narcoleptics think about their Modafinil but the hubby definitely did not agree with his description.  A follow up appointment was made for the second week in December and we trotted off to the blood clinic feeling like naughty little schoolgirls.  We discussed his appalling attitude while waiting for them to take blood.  I cursed not having any internet access to quickly Google the effectiveness of an HLA marker test for narcolepsy alone.  And Lily told me this was how she had always been made to feel by doctors and consultants.  I was still stunned.  Maybe the doctor had reflected on the effectiveness of the blood test (although I very much doubt it) but he came to the blood clinic while we were waiting to tell us that he wanted Lily to wear an actigraphy watch.  No matter how he made us both feel at least the ball is definitely in motion to rule out/diagnose narcolepsy/some other sleep disorder.

 When I got home and spilled the whole lot out to the hubby he was mad at the way we were treated, mad that I hadn't mentioned the true extent of previous studies and research stuff but not too surprised at the consultants ignorant analasis and sleep hygiene lecture.  He may be a narky narcoleptic at times but he usually has a way of calming me down enough so that I can look at something from more than 1 angle. Yes, that doctor was arrogant, patronising and completely ignorant, but I guess in his eyes he saw and heard a couple of internet diagnosers.  That I was just some random who was trying to prompt Lily into a narcolepsy diagnosis based on a little bit of internet searching.

 

I dress a little quirky at the best of times, I had made an effort and wore a long skirt, a blouse but wore a pair of long stripy socks.  I might not have pulled the smart, semi-professional look off.  But that shouldn't have mattered.  Because Lily doesn't have sleep paralysis or cataplexy symptons he dismissed the possibility of narcolepsy, of any sleep disorder.  He truly believes that if Lily dropped the naps her whole life will miraculously be vastly improved.  What does he think, that she's never even tried that in all the years she's been feeling this way. All she wants is to be awake enough to live some sort of normal life.

I'm still mad at myself AND at the doctor.  I feel like I have let Lily down, let myself down.  Next time we meet won't be the same.  I have a problem with ignorance and narrow minded people.  Ignorance from a doctor is even worse.  Trusty Google gave me the medical papers to show him the inefficiency of the HLA marker test in Lily's case, that narcoleptics are very often prone to RLS and the efficiency of Modafinil vs caffeine (supercharged or not).  All things he shot me down for suggesting.  I'll wait until after the diagnosis and probable polysomnography appointment have been made though.  I might even slip him some research about narcoleptics that also suffer from insomnia.

Until I met this consultant, I had thought my husbands consultant was rubbish.  He isn't a sleep specialist which has been my biggest bug-bear.  At least he has always been willing to listen.

Two sides

I spent a little of my spare time at the weekend looking at the narcolepsy forums I've recently discovered and read one of the nicest posts I've ever came across.  It was written by someone who was in the early stages of a relationship with a narcoleptic.  He wanted to give his new partner support in the areas which would help her out the most and also to understand the condition more.  I commended his desire, offered what little bit of advice I could and ended with a statement which reminded me of the reasons I began this blog.

Sometimes the tiredness over rules EVERYTHING and a seemingly normal conversation can rapidly turn the narcoleptic into the world's most argumentative, angry person.

As a wife and human being, that is the side of narcolepsy I have had the greatest problem understanding.  It rarely escalates to that point and when it does it's generally because I'm beyond tired myself.  A throw away comment from either of us at moments like that can rapidly become a lit fuse.  The rational me is able to shrug off the barbed comments.  The tired me takes the bait.  The tired me wants to sleep.  The tired me resents that an argument has been started and the hubby can just fall asleep while the pointless, childish argument has robbed me of that opportunity.  That's when I HATE narcolepsy with a vengeance.

Last time was different though.  I'm far from a needy, whiny person but occassionally, just like everyone else, all I need is a pair of strong arms around me especially when I'm thrown into a gross situation.  With my extended family that seems to be just around the time when we have finally put the previous imposed drama behind us.  We argued, I felt crap, he fell asleep, I stayed awake worrying.  My eldest son was missing, considered to be a vulnerable person, a risk to himself.  I reminded myself that sleep is the Mistress above all, that after a nap he would remember that he loved me enough to see he had acted unreasonably.

After his nap I tried to explain how his narky narcoleptic side had made me feel, how I had to remind myself it was the narcolepsy and that I understood the narcolepsy made him behave in ways that the husband I loved never would.  His reply devastated me.  I didn't understand anything about this wretched disorder, that the narky narcoleptic and him were impossible to seperate into the two pigeon holes held within my mind.  I did what I do best and withdrew into myself, pulled my big girl pants on and worked through the whole missing son/pointless argument/hurtful statements on my own, in my own way, music and internet research.

Keeping my 'normal' narcoleptic husband seperate from the black narcoleptic was always my safety net.  His lack of empathy, along with his insistence that the two sides were inseperable, along with my own stress, anger and tiredness were all making me question my sanity.  I began searching for support groups created by people like me, then turned to narcolepsy forums, then to blogs written by narcoleptics.  I eventually stumbled across the Narcoleptic Wife's blog.  Finally, after 12 years, I was reading it from the other side, my side, the partners side.  This was the first entry I read.

I resisted voicing the big, fat HA! I felt as I read it.  But I suddenly realised I'm not alone.  I felt a new invigoration reading her blog entries.  I carried on reading and eventually came across these interviews from narcoleptics.  And suddenly, I saw things completely differently.  The last 30 months have been pretty hard on an emotional level.  Family stuff beyond our control but stuff that still had a huge impact on us both.  Sure I'd managed to deal with most of it myself but in doing so I'd lost sight of us as a couple.  Neglected one of the most important people in my life.

Through that blog and reading more and more posts written by narcoleptics I realised that it wasn't just me who had felt alone but the hubby has been too.  We were able to talk properly about it all for the first time in far too long.  I've never been able to tell him about the negative impact the "narcolepsy" has on my life before unless it's been shouted in anger.  I knew the negative impact it had on his life but I had forgotten how that impact affects him inside. I had been wanting to talk someone who truly understood how I felt for 12 years, he had lived with his diagnosis for 25 years and never talked to another narcoleptic.

I'm hoping that he'll read some of the forums/blogs written by other narcoleptics.  25 years is a very long time to never meet or talk to another narcoleptic and only another cataplectic can understand what an attack feels like.  Tomorrow we are meeting up with Lily for a get to know you chat before her hospital appointment.  Lily has endured years of no-one understanding that she's not lazy or idle.  Her overwhelming tiredness has left her too sleepy to even consider socialising just now.  The isolation and ignorance about the disorder makes me feel an immense frustration.  There are other spouses and sufferers out there who are still feeling that isolation.  I don't know where all this is heading but I do know that something in me has changed.  The N.H.S. broke my spirit 6 years ago over their repeated ignorance.  Life stuff kept that spirit broken.  Narcoleptic's Wife helped restore it.  Let's see if the N.H.S. is ready for the new and improved spirit.  I'm certainly ready for them.

Lily's tale

I mailed the name of my hubby's specialist to Lily and wished her luck for her sleep study.  I followed her updates on the Facebook group and it began to look as if she was dealing with appointments alone.  A mixture of this thought, coupled with the thought she may have to deal with my favourite consultant made me act in a completely alien way.  I mailed her asking if she had a strong support unit.  As I hit send I knew that I had to offer her as much help as I could, no going back.

The following conversations between us only strengthed my determination.  Lily is a single parent of 2.  All her life people have classed her as being lazy, idle.  Her closest family members have told her she needed to be more organised.  More organised!?!?  This lady has been napping almost daily for the last 12 years, suffering from excessive daytime sleepiness since she was a child. Looking after her young family.  This was a very independent lady, who had been beaten down with indifferent GPs and tiredness.  She didn't want anything else other than to feel awake.

 

It was quickly established that Lily was going to the hospital appointment alone when it eventually came through. My mind immediately returned to the last appointment I went to with the hubby.  A 90 minute wait in a warm waiting room with no external stimulation.  In other words, the perfect seductive sleep environment.  I also remembered sitting in that waiting room watching an obvious narcoleptic, who was either undiagnosed or their meds were totally wrong, fall asleep, wake up, fall asleep, wake up on and off for 60 of the minutes I was there.  The person was eventually woken up after their name was called several times and off they went, alone.  If you know someone with narcolepsy or suffer from it, then you will know the brain fog, auto-behaviour head that person was feeling when the consultant talked AT them.

It was also quickly established that Lily had been sent for a sleep apnea study along with a blood test.  The blood test is all new to me but my guess is that it's to rule out other things that might be causing the EDS.  I'm annoyed that it took this long just to get a sleep apnea test with the hospital but it's a start.  Lily has also allowed me to attend her up-coming appointment with the hospital respiratory consultant.  I shall be wearing my narcolepsy advocates hat that day for sure.  Maybe it is sleep apnea.  Listening to Lily's symptoms I'll wager I shall be meeting with my favourite consultant sometime in the near future. I hope he's ready for me.

The lack of support from GPs, the lack of information and aftercare given after a positive narcolepsy diagnosis is really beginning to grate on me.  I can't think of any other life-long or life-changing condition that is diagnosed and the patient is given zero information.  I don't know where I'm going but I'm sure this is just the beginning.

Rain + sunshine = a rainbow

Reading The Narcoleptic's wife blog made me feel a multitude of emotions.  The sadness came first.  Sad that it took me 10 years+ of having the internet to find someone who understood, especially when I consider myself pretty computer savvy.  Sad that life events had spiralled to the point where I was clinging on to my sanity and had somehow lost sight of my husband's daily fight.  And sad because I suddenly realised that our life had travelled along in limbo for the last 3 years without me even realising.

It made me feel frustration.  Frustration that his supposed sleep specialist knew less about narcolepsy and cataplexy than I did.  Frustrated at the N.H.S. dragging their feet to prescribe him Xyrem while people were being funded tummy tucks and breast enlargements.  Frustration at the missing support network within the UK.

But most importantly it gave me renewed hope to fight.  The knock on reading made me realise that yeah, life is tough, but there are narcoleptics out there who don't have access to the N.H.S.  Narcoleptics here, who have had a long hard fight to be diagnosed (12 years is the average time in the UK of a diagnsis from the first symptoms) People who have no choice but to live med free because their insurance doesn't cover it.  I can't begin to imagine my hubby without medication.  Every day.  Religously at the same time. Every day.  I'm such a bad time keeper.

So I began to look at groups which had been set up on Facebook.  The first one was full of vitriolic shpeel (maybe the angry members had no meds that day?), the second way more friendly.  The more I read though, the madder I got.  Mad at the stories I read about the hurdles within the N.H.S and the benefit system that narcoleptics had to jump over.  A lady called Lily told her story. She was going for an overnight sleep study.  Lily's tale grabbed my attention, mainly because I realised that she lived in the same catchment area as my hubby. 

Initially I was excited when she told me she was going to a different hospital than my hubby's but the catchment area still concerned me.  I can't remember the amount of times his 'specialist' has referred to my hubby's cataplexy attacks as cataleptic attacks.  Hmmmmmm they sound the same vaguely but are totally different things.  I was faced with a sudden dilemma.  In my off-line life I'm not the most sociable person you'll ever meet.  Lily has suffered from EDS since she was a child, her symptons became markedly worse 12 years ago and this was to be her first encounter with a 'sleep specialist' in this catchment area.  If I made contact, that would mean fighting her corner.  If I didn't then I knew she was likely going into a lions den, unarmed.

I had no choice.

Stepping into the unknown

Narcolepsy.  It's been a big part of my life for the last 12 years.  I don't have the illness, my husband of 7 years does and has had for the last 25 years.  In some ways I'm grateful that I've only known the narcoleptic husband because I know how much the illness has changed him even in the time that I've known him.

So, why a blog after all these years?  The answer is simple.  Some days/weeks are harder to get through than others and this week has been particularly difficult.  After yet another argument when the soul destroying demon narcolepsy overtook my husband's reasoning skills, I suddenly realised that there was no-one that I could really talk to.  No-one who understood what it was really like to live alongside "narcolepsy".  Sure, my husband knows what it's like for him but what about me?  The resentment and frustration that I occassionally feel.  The fact that I put his illness first all of the time and when I needed him to put me first, the seduction of sleep won every time.

Just as I was ready to scream the frustrations away I discovered a blog.  Not just any blog though.  A blog written by a narcoleptic's wife.   A wife who I could relate to completely.  Someone who not only expressed the same frustrations that I was feeling, but felt the same guilt at expressing them.  I drank in her posts about the mood swings, nodded my head at her post about feeling isolated and felt her pain when she blogged about the affects of living alongside narcolepsy when tiredness/sleep is the mistress above EVERYTHING.  Not only that but she had replies to her blog posts, replies from other narcaleptic spouses, all able to relate and reassure.

And suddenly I realised that I was not alone. 

I was also reminded about all the different ways that narcolepsy makes my husband feel, something that is ever present but something that I'd also became complacent about.  Sadly, there have been no updates from The Narcoleptics wife for over a year.  In one of my darkest moments, her blog shone out as a beacon of hope.  I hope that this blog can maybe help someone in the future, just like The Narcoleptic's Wife helped me.