12 hrs sleep, 2 strong coffees and no work…

That’s all I need to make it through a day well it seems!

I slept almost 12 hours last night except for a brief hour or so in the dark with my thoughts some time in the night – I don’t look at the time anymore.

The blood test didn’t go well.  I thought it had but walking down the street, it suddenly spouted a geyser and distressed me but not my 3 year old.  She took it in her stride and asked ‘why’d you hurt your arm?’.  Blood stains your hands and is really obvious so I was reluctant to go into a cafe without having cleaned it off, but all I had with me was some tissues and hand sanitiser.  It worked.

So this blood test will look at liver function again, thyroid function, iron levels and vitamin levels.  I am curious to know what it will show but also reluctant.  Same as with the suggested method of ‘pacing’, if my blood tests come back negative for anything unusual and I also reduce my workload and still struggle with fatigue then that’s scary.  I haven’t wanted to look up chronic fatigue syndrome much so far, but often the information online is all about how the condition has been mislabelled and proposing ridiculous new names for it instead.  Although I can relate to the reason why that would be a help.  When I thought I had Ross River Virus, I had a known and understandable condition that while still being indeterminate in length was at least recognisable and relatable.  When I tell people I have parvovirus, most people reply ‘Isn’t that a dog disease?’ and when I say it’s post viral fatigue, they nod, pause and then say ‘so… you’re not better then?’

It’s ok.  I get it.  If you haven’t had it, you won’t understand how real it feels.  It’s not like I’d just prefer to lie down or feel a little overstretched.  Most days my bones ache with tiredness, I plot my movements across a room to maximise the amount of things I can reach/pick-up/retrieve with the minimalist of expenditure.  I wake in the morning, even after 12 hours sleep, feeling tired.

I read some time ago a piece written by a woman who needed the assistance of a wheelchair from time to time.  I can’t remember why and it’s not important.  She was commenting on how it was easier for her to use the wheelchair than deal with the judgmental stares and comments from people who clearly didn’t understand how she was getting up from a wheelchair.  It seemed that in their minds, if you were in a wheelchair, you bloody well better need it and stay in there!  It’s very sad that this prejudice exists.  I also have learned that we all judge and it’s almost unavoidable – think of yourself walking behind someone in a wheelchair, then seeing them get up from it.  You might suddenly think a miracle has occurred and shout hooray for them!  You also might wonder why they are using the wheelchair but you don’t have to say it!  It’s such a extra burden that people without obvious afflictions somehow have to prove to others that there is something wrong with them.

So anyway, there isn’t much likelihood that I can maintain a lifestyle of 12 hrs sleep, 2 strong coffees and no work… unless I get a 24 hour nanny, a coffee machine and win the lotto.  So lets see what happens tomorrow when I’m back to work for an 8-hour day.


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