The Man Who Sleeps With Both Eyes Open

Sleeping with eyes open sounds weird but for us it is old hat and a real bugger.

Have you ever been shocked awake out of sleep with someone panicked and worried if you are ok?  Or how a good nights sleep feels less refreshing & leaves your eyes dry and scratchy making you more irritable?  What often happens with FSHD is that for many people they cannot close their eyes while sleeping.  Not entirely unusual, there are many medical conditions that have this.  Even with almost wide open eyes.  Often my husband will fall asleep like this where the only detectable sign he is asleep is a snore or unresponsiveness.  Well that and the tablet he may be holding to read or watch slips out of his hands without notice.  While sleep meds can help someone go to sleep, or stay asleep, they do not ensure that sleep may be entirely refreshing or in terms of the eyes beneficial.

Some mornings even the daylight hurts and you can be forgiven for being annoyed at the pain.
 

Hence the name Mr & Mrs Grumpy.  Not just grumpy but Mr/Mrs Grumpy.  It can be really terrible when sleeping difficulties, breathing difficulties and pain team up on you, often when you desperately need to rest.  For anyone they will be irascible when undergoing those conditions long term and when living with people they will, even unintentionally, direct that irritation in response to the people around them.  Patience is a big key, along with recognition.  However the recognition and patience must be a two way street.  As my partner and I share sleep, breathing and pain issues we end up both experiencing a bad morning often.  Sure we have occasional morning arguments like every couple has about who didn't flush the toilet, or put out the trash, or responded to a question with a slightly more inflected tone.  We can end up having arguments by bouncing off each others mood and unintentionally upping the ante, even without meaning or wanting to.  But by now the arguments become fewer & just the grumpy tone is left on many bad days.  We have gotten better with dealing with some pitfalls.  Yet even on bad days any contact can be painful and leave you wanting unconsciousness, just to get away from some of the pain, (even just to pause it for a short time). 

In the movie Pi the lead suffered terrible migraines, I think they captured the feeling quite well.

So as another key to patience the next big thing is the word 'sorry'.  Great sometimes even used at the beginning of a reply to preempt when we know we are having a bad morning.  I know what I say will sound grumpy like I am possessed by the stereotypical grumpy old men who found the footpath outside their house filled with teenagers... on skateboards.  Especially good if we are really dazed to start the day with FSHD or ME symptoms and in a lot of pain so our response may be more croaked out instead of spoken.  Sorry, please sound down, loud.  You may also notice words, grammar and sentences can get clipped down to less physically & mentally arduous levels.  I end up doing it more for pain & neurological speech issues where forming a single word can be the challenge of lifting 50kg in one hand.  Like the mind is fully focused on it but it feels like that part of your brain has nails in it, or completely disconnected so trying to do or access what can be a simple skill like speaking just no longer works.  In scuba diving divers use hand gestures to convey even complex concepts & discussions.  It helps when you can recognise the other person is in pain & can read their unspoken messages patiently.  We help each other in anyway we can, even if that means leaving them in a dark room to work through the pain at odd times.

We had 20/20 vision, but during rough flares our sight often has blurring, auras, delays, etc. But these things can change suddenly or gradually. Permanent damage can creep up when not looking.

Where the eye chart comes from? Father Ted  "Slovakia's premier lens manufacturers"

But sleeping with your eyes open does not just make them dry, scratchy, your sleep less refreshed, painful and more irritable.  What we found out recently was the distortion caused by the moisture differential over time was distorting the vision in the eyes.  Years of this caused the vision to become more blurred and my husband could no longer read as well in short distances.  Suddenly text he could usually read from 10m away now could no longer be read even when held in front of him from a couple meters.  The blurring got so bad it became painful to work coding, constantly trying to focus the eyes.  It was time in his 30s to get eye checks usually only those decades older address.

Interesting look inside an eye producing almost artistic views which can get hard to focus on.

He even got to look at the scan of the retina where they look for serious eye diseases including glaucoma, macular degeneration and retinal changes that may be associated with diabetes.  $500 and two weeks later and we had a pair of prescription glasses with tailored lenses.  The difference was noticeable.  The headaches related to the sight blurring during reading reduced, and after getting used to the glasses they mostly stopped, (he still had a host of other headaches but the sight related ones were clearing up).

Yep we lost a couple of glasses so far to the mysterious crows... named falls & lost.

Going forward not only are the glasses required, but also gels, drops & eye masks for every nights sleep.  Finding a good mask appropriate for the task is not always easy.  Most are designed with the assumption the eyes can mostly close as well.  So the linings are bad for contact with eyes and quickly become unsanitary or move around too much.  Ideally something we could regularly clean & disinfect like a form of durable plastic, similar to the gel ones used for cooling but with a better cover for blocking out light.  It is hard & expensive to start the habit of glasses, gels and masks.  They often don't make it into the budget & get rationed.  But now they are a necessity none the less.  There is no question about it.  We must adapt to counteract the issues with eyes open.  Plus we regularly check in on each other, especially when breathing is problematic.