Getting Out of Bed (Myalgic Encephalomyelitis)

Getting out of Bed is always a pain.  This morning was the same.  Set an alarm – yeah yeah – the alarm goes off at 7 O’clock (Party Time) but that’s or more less only first warning – I rarely even remember getting up to switch it off.  8 O’clock alarm more like it – brain is thinking – get up take mediation; but I’m still sleeping come 10 O’clock.

It’s easy when you’re living with someone.  My daughter shouting to me; “Are you awake?”; “Can I go to the toilet”…  She’s a huge encouragement; generally to help dispel the normal doom which causes me to roll over and go to sleep when she’s not there.  A wife nagging you to get to work; or just the thought of it used to get me out the door – but hell, I remember stopping the car and going back to sleep for an hour on the way to work!

Let me explain.  One of the major symptoms of M.E. is muscle fatigue as if the energy you need isn’t there; which leads to pain; breathless; poor circulation – everything is running at 80% efficiency – you just not getting enough.   But the brain is thinking:- pain, anxiety, push harder, finish what you started, get up, get going, breath…  and then there’s what is called inappropriate adrenalin response…

That means that when you wanted to push, to get up, to do anything – nothing happens; and then later or when you want to relax bang… adrenalin.   This is relentless; try working when you need to – or sleeping when you should.  Pretty soon you really fatigued!

Doesn’t fatigue help you sleep?  Well, in a word no.  Because you can’t control it.  You are likely to be stressed by the end of the day, – because you achieved nothing or little that day or because you’ve already started thinking how you’re going to get up the next day.  Then there’s the physical pain; when it’s bad it warps around you when you lie there trying to sleep.

Getting relaxed, taking your mind of the day’s worries, stopping working or thinking an hour or so before bed is excellent advice.  I rarely achieve this state of mind.  I only wish life would let me?

Getting out of bed requires a number of things to be right.  Firstly you need to have had some refreshing sleep.  (1 in 100 chance of that if you have got life in order to try and stop the anxiety) but possible?

A glass of water immediately on rising; before the alarm is off and soon as you are on you’re feet.  Not bed sitting in bed – you’ll fall right back into the pit.  Oh, and put the alarm downstairs.  Drink the water, slosh and straight downstairs… switch of the alarm.

Hopefully both the rush of drinking the cold water; together with dash to alarm will have woken you enough to stand by the kettle and wait for it to boil; at least when it does – you’ll wake up? (without the glass water I’m back in bed and in a stupor before I know it!)

Next is up to you.  Set a few goals or things to do immediately.    It’s easy when you know the kids need breakfast, but on your own… you’ll fall asleep on the sofa.

I boil the kettle

Switch on the kids TV (not the news – you’ll end up channel hopping for 2 hours waiting for something interesting…)

Switch on the Computer

Then I follow them around:- make Coffee, log-on, put in toast, load Outlook, butter toast…  this way I’m moving and not sitting down backsliding towards sleep.  After I’ve eaten then allow myself to relax… but not sleep?

From Dr. Slump. Volume One by the wonderful Akira Toryiyama! Helping us all keep a sense of humor!

I’ve struggled to get up for over twenty years; long before my diagnosis.  I know I’ve ruined parts of my life, or missed them altogether, – even slept in when I’ve got tickets to go places…  Without a solid routine to chase me around in the morning I sleep for the rest of the day.

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