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.