Will I ever wake?

This is a weird post. Too long for Twitter. I guess I would normally put something like this on Facebook, but I don’t want to give certain people the satisfaction of seeing it. Yet I have to get it out for my own sanity.

A little background for those who don’t know: I have sleep apnoea. I’m not allowed to drive (since May) until it’s under control. The CPAP machine made it worse, so investigations are being done to find out the cause, and hopefully to fix it.

In the meantime, I exist in this foggy half-life. I can function as a normal person, working hard, smiling and laughing, for maybe 5 days in a row at most. Then, the effort of maintaining that facade hits me. I can barely get out of bed at weekends. When I am up, I yawn so much my jaw hurts (coupled with bruxism, from grinding my teeth, trying to stay alive in my sleep).

If I try to tell people, a colleague at work for example, just how exhausted I am, I get told in a mocking tone “yeah, I’m always tired too – I just don’t let it bother me”.

Comments have been overheard too, people talking about double standards, and why I’m not being disciplined for having a few days off here and there, and refusing to accept that they all relate to an existing condition.

I’ve heard the term “invisible illness” before, but only now do I fully understand just what that means, and what effect it has on the person suffering with it.

Today I slept through all of my alarms. When I finally woke, after I should have been at work already, it was just all all I could to phone and tell them I couldn’t come in, before falling back asleep.

I’m cancelling more plans than I’m actually going to. Often letting people down at the last minute as I just can’t find the energy to get ready.

My life is getting smaller and smaller.

The depression I’ve suffered from since I was a teen, has taken on a whole new lease of life. It’s more powerful than it ever has been before, at a time where I barely have the energy to get out of bed.

I think it’s starting to beat me. And I’m so scared. I’m scared of never driving again (my God, do I miss it). I’m scared of seeing my colleagues’ posts on Facebook later, about me having “yet another” day off (ambiguous enough so I can’t prove its about me, but still very obvious and hurtful). I’m scared that my life will just continue to get smaller and smaller until one day there’s nothing left except tears.

But most of all, I’m scared that the latest round of tests/studies will reveal nothing. And that it really isn’t going to get any better than this.

1 thought on “Will I ever wake?

  1. Im feelimg your Pain! As you know i have sleep apnoea to, i stopped breatjimg on average 52 times an hour on average without the cpap machine.
    I had sleep analysis test last week at papworth hospital. I had to lay flat in bed had a load of electrodes stuck to my head face and calf muscles, a band around my chest and a pulse oximeter probe on my finger.
    I slept okish felt like utter shite whem i woke up.
    Then came the day time tests. I was sent to bed every 2 hours from 9am lights out blackout blind down and told to try and sleep(which was a piece of piss) then woken up after 20 or so minutes. I was them detached from all monitoring then re connected 2 hrs larer and start all over.
    Results came through on monday, it looks like i habe REM sleep behaviour disorder as i was kicking out and shouting in my sleep, the Consultant said my body was hovering above REM sleep but some type of brain activity was preventing me getting beyond that and into a proper dream sleep. Naturally inwas pleased to have deifinitive proof of a brain and that it was active!!!!
    Changes will ne made at work once ive seen occupational health. Plus i had break through apnoea with my cpap on !!!!!!
    Hoep you dont mind me off loading but you light be one of the only people i know who could be closest to knowing what it feels like.
    Have you tried pushing for sleep studies??? Might provide some answers. Hope it all picks up for you soon xxxxx

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