January 10, 2013

To Know It Is To Loathe It

Posted in Crashes, ME/CFS, The Bad Days tagged , , , , at 7:17 pm by Reva

Today I hate ME/CFS.  Not that I usually love it, or even like it, but usually I tolerate it.  It’s there, there’s not a lot I can do about it.  But today I am having a day where I really hate it.

I hate the feeling of waking up tireder that when I went to bed.  The feeling that my eyes are stinging, that I would have been better off staying awake all night because for some reason the idea of having stayed up all night seems less tiring than how I feel this morning.  And the reason I know it’s worse than a normal night is that I slept right through the night.  Usually I wake up at least once.

I hate that the dreams I have during a crash are insanely weird.  I never remember the full story, just snippets.  From last night I remember being in a cooking competition, making “a trio of nachos”. There were appetizer ones that had individual corn chips lay neatly on a tray, each with a dab of tomato salsa and a sprinkle of cheese, grilled until just brown, then drizzled with an avocado sauce in a neat bottle.  There was also a heap of people who I haven’t seen in years, who I was sharing a house with – I think I was back at uni.  There was hiding from someone, in what looked like a storage room with glass windows and open metal shelves – like the ones you see on medical shows on TV.  Then I was at work, in some place I don’t recognise.  And the weirdest, hiding parts of a dead body.  I have no idea what that’s.

I hate that on these days I become so emotional.  The smallest thing sets of the tears.  I had one of most emotional work trips today driving through a small town where a murder occurred since I last drove through, past a road sign to another small town where out of control grass fires tore through homes earlier this week, past the fire fighters out washing down there truck after fighting those fires.  On a regular day these would have touched me but today I welled up.

I hate the way my brain seems to go on strike, the way it stops mid-sentence.   It reaches a point where it not only happens when I’m talking but even in my thoughts.  And if it doesn’t stop it goes off on tangents so often that I suddenly stop with no idea what I was supposed to be saying.  Trying to get back to the point is like treading water in my head…if I keep talking maybe I’ll remember the point and find my way back to it.

I hate that there is so much I need to do and knowing that it’s not going to happen.  Or if it does happen, I’m going to be in even worse shape.  I need to wash my car properly – it has moss growing in crevices because I keep giving in and taking it to a drive through car wash so it’s never properly clean, or dried.  I need to change the sheets on my bed, but making it will probably take me all day.  I need to make a heap of phone calls.  I need to restock my freezer. 

I hate that despite knowing that I need to do all of this I spend all spare time outside of work sitting on the couch, watching bad summer TV.  And that when I get back to work people ask what I did on my day off/weekend, because when I try to come up with something the best I can manage is “watch tv” or “not much” and they respond “oh that sounds so nice, I wish I could do that”. I don’t have the energy to do even the seemingly restful activities like sewing or writing or reading.  Sometimes even watching TV is too much. 

Most of all I hate how negative I become.  I’m sure I’m not like this on the good days.

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  1. Fiona said,

    I can totally empathise with you and it’s just so hard to let things go when you feel everything is getting on top of you and you don’t even have the energy to think of a way out. Do you have access to any more support services? How long do these crashes usually last? It must be so frustrating to be going through this. You are definitely not a negative person. You can only try not to be hard on yourself. Can I help in any way? A housecall perhaps with some macarons and a chat (I’ll make the coffee) and help you with your bed and anything else. x Fiona.

  2. Reva said,

    Thank you Fiona xx
    This is the longest crash I can remember. I think the weird weather, Christmas and some major work stuff is causing it to drag out. The weather I can work with – I’m being good with my fluids and keeping pretty cool. Work is tricky but I found out today I might be able to see our return to work officers at work (it’s taken me a while to find them). I’m always ready for a coffee and a chat – see how go for time and how the weather is treating you (It’s supposed to be nasty again by tomorrow) and give me a call.
    Here’s hoping a big vent got it all off my chest and tomorrow will be a better day 🙂

  3. Fiona said,

    No probs at all. Can totally empathise as you know. The hot weather really knocked me about. Not looking forward to tomorrow being hot. I have messaged you on FB too in case you didn’t see this message, with some suggestions. I don’t have your phone number (lost that sheet of numbers) but if you send it to me via FB message or reply there to my questions, fiona xo

  4. hayley said,

    It sounds dreadful. I can’t properly imagine what it must be like but thank you for writing about it and allowing the likes of me a small bit of understanding. I hope this one lifts very soon.

  5. Reva said,

    Thanks Hayley, some days are worse than others and I think I needed to vent. I’m trying to put some things in place to help which I think are slowly helping

  6. jackiewriting said,

    I can relate to everything you’ve written here :/ x

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