The Good, The Bad & The Downright Ugly

There are those days where I’ve actually managed to get a block of decent sleep, wake up more or less refreshed, and have enough energy to be up and dressed by 9.30am (a feat which still astonishes me after being bedridden and unable to get dressed for nearly 10 years in my twenties and thirties due to severe M.E.).  I greet the day with enthusiasm, do laundry, drive into town to do a bit of shopping or to see my parents, actually walk my dog (as against taking him out on my scooter with his lead clipped to my waist) and still have the energy to make myself something for dinner when I get home.  I’m still in pain, and I’m still exhausted beyond most healthy people’s imaginings, but I can function and I don’t feel “ill”.

And then there are times like this week when it’s all I can do to drag myself to the loo and back and change channels on the telly.  I barely sleep, go all day without having a wash or brushing my hair, feel hungry and sick at the same time so that just thinking about food let alone cooking it is beyond me, and drag some jeans on over the top of my pyjama bottoms to let the dog out in the garden for a quick pee before crawling back to bed.

My current crappy week is down to hormones.  Every 4 weeks my period knocks seven bells out of me and my M.E. goes into overdrive.  I feel like I’ve got flu.  I sweat, I ache and my whole body feels like it’s made of concrete.  My collagen is even stretchier than usual, so the slightest movement feels like my muscles are tearing.  During menstruation I wear every single one of my braces and currently have the 1st two fingers of each hand taped together for stabilization while I wait for 4 new DIP joint supports (I look like Flipper 😉 ).  I have serious insomnia, which results in my being grumpy and irritable.  My brain function is so poor it actually scares me: I have no clue what day of the week it is, my memory is appalling, and my head feels like it’s full of treacle so that my every thought is like wading through mud.  Even lying still I have stinging, burning pain throughout every muscle and the whole of my back is on fire.  Nothing I do seems to soothe it and the whole experience sucks in a big, big way.

Despite the fact that I’ve been ill now since 1994, these really bad days still surprise me.  I forget how sick I truly am and even now, despite knowing these times are transient, I lie there worried stupid that I’ll never feel better again.  Which I know is daft, but at times like this reasoned thought goes AWOL along with my sense of humour and any ounce of positivity I might otherwise possess.

Being severely ill is boring as hell, as I’m too unwell to do much of anything.  I can’t concentrate on the tv, my eyes are too painful to read, and despite the fact I’m blogging being on the laptop is giving me the start of a thudding migraine (it doesn’t help that, for some unknown reason, all the print on the screen looks green, underlined and is moving like the waves of the sea!).  I tell myself I should be able to just ‘be’.  To lie peacefully and listen to the wonderful birdsong (I’m so lucky to live in the countryside) and just let my mind wander.  But it’s hard to find peace when your whole body is cramping, and sore, and burning, and aching, and thoughts tumble and race because your mind is bored literally out of its skull.

I can only hope that tomorrow is a better day.

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5 thoughts on “The Good, The Bad & The Downright Ugly

  1. zebraboo

    I freak myself out with my continual, repeated, surprise at the bad days as well. I think it’s because I distract, minimise and purposefully forget them as soon as they’ve gone, and I’ve got so good at doing it that when I have another hideous day I think ‘wow I’ve never been this bad’. I think it’s a coping mechanism to stave off major depression!!!!

    More than anything my body can do, when my mind starts to turn off and become full of treacle sludge, that’s it then, that’s the bit I can’t stand. My body can totally screwed but as long as mind is working then I’m ok….the brain-fog is just the most horrible thing. Forgetting people, words for things, where I am, where I’m going, what I’m doing, replacing words with similar but totally inappropriate ones, slurring, stumbling….. simple maths….following what someone’s saying…GAAAAH.

    Do you get a lot of visual stuff when you flare? I have been beginning to wonder if I’m having complex seizures. I’m really not sure – the funny font struck a chord. I get weird pixels over stuff, sparkles, flashes, undulating things like they’re in a heat haze…. totally bloody weird!

    *hugs* you feeling better?

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    1. bertieandme Post author

      Ta for the hugs, much appreciated 🙂 I’m not quite so shite, but still not brilliant if I’m honest. Roll on the flippin menopause!!

      I get all sorts of weird vision stuff: I get the undulation like a heat haze a *lot*. I loathe supermarkets because for some reason the weird flooring they have often feels like it’s moving and coming up to meet me! I have *horrendous* floaters – one is so big it actually showed up on my recent eye x-ray at the Opticians. I also get the sparkly lights and flashes – sometimes these then turn into zigzag lines and is the start of an aura migraine (I get those without any head pain, but they make me feel completely spaced out). I also get weird black crawly things in my vision, and I panic thinking there’s a spider in the bed. S’all good fun!

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      1. zebraboo

        Woah that sounds just the same! My docs/optician are not sure if what I’m getting is ‘silent migraines’ – just the freaky aura. My optician spotted a floater of mine too hehe. I have hundreds of the nasty buggers.

        I’m sorry you’re still feeling pants x

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  2. bertieandme Post author

    Migraine with aura but without headache are called “classic migraines” http://ihs-classification.org/en/02_klassifikation/02_teil1/01.02.03_migraine.html. I had aura migraine without headache for years, then all of a sudden they changed to common migraine (no aura but excruciating head pain).

    The flashes of light in my vision are different to my auras though – the aura are unmistakable, it’s like viewing life through a kaleidoscope (my vision is totally obscured) and even with my eyes closed the aura continues like a firework display in my brain. I often find eating something starchy, like some toast, helps for some reason! They last anything up to an hour, which is quite long for aura apparently x

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    1. chrissy

      Oh my. I have had these now for the past six months or so. Especially the firework effect when eyes are closed. No idea what is causing it. All to do with histamine overload? As I type this with insomnia at 2am and my lips swollen like Pete burns after I think maybe eating some blackberries – who knows! Yet eaten them all my life with no effect. What the hell is going on?

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