Thursday 14 August 2014

It's life, Jim, but not as we know it.

(Made it to have 1/2 an hour at a local lake a couple of weeks ago. It was overcast and set me back, but it was beautiful watching the swans and just feeling the breeze.) 

(The words and thoughts are sort of rambling and unconnected and flowing today. Headaches and pain and blech all mixing together.)

Life. It's not going exactly as I planned. Or even remotely in any way shape or form like the life I had planned.

But, Mousie, thou art no thy lane [you aren't alone]
In proving foresight may be vain:
The best laid schemes o' mice an' men
Gang aft a-gley, [often go awry]
An' lea'e us nought but grief an' pain,
For promised joy.

Robert Burns, To A Mouse on turning up her nest with a plough, 1785*

Lying in bed again. Again. Again. Again. It's starting to wear me out. If it's not the pain, it's the post-pain exhaustion. Not that the pain ever actually leaves. It's just a question of degrees now.

Life is.... challenging, testing, demanding, confronting, painful, sucking, shit, crap, f'ed up.

I lay curled up in a ball next to Mr Grumpy last night. Across the bed because that's where I fell after making my way from the bathroom. He just picked up my head and lay it gently on his stomach and opened his book. Because that's where we are now. Because carrying me to the couch to eat dinner, knees clasped to chest, carrying me to the bathroom, and me being a constant ball of pain are just normal. He brings me heat packs and rubs my back. He holds my hand and makes jokes about keeping the pain moaning down to a minimum so he can sleep. Abnormal normal strikes again but this time with a side of unrelenting gastric pain.

Two months until I see the specialist. Two more months of pain, if past months are anything to go by. Wait lists. Cancellation lists. Force the food. Feel the pain. Force the food and still lose weight. Force the food. Feel the nausea rise.

And we wait. I say we because it is we. My little family are waiting with me. They have a pain of their own in watching me writhe, and not being able to help.

Small victories are celebrated.

An excited, Hey you're out of bed Mum?
Followed by a wry, You must be cured!

We find joy where we can. My foray into the cinema of superheroes continues. Lets face it there's not a lot of thought required and a decent chance of a reasonably attractive hero or villain to satisfy. My youngest (though at 16 I'm not sure I can call him youngest any more) sat in bed with me watching Iron Man. Discussing the total waste of time, and crime against cinema, that was The Hulk, and who is the best Marvel character. It is hard to explain how much those times mean to me. That at 16 he's still willing to go out of his way to spend time with his mum. I treasure every moment.

I have surrounded myself with books and magazines that feed my soul and challenge my brain. That let me escape for a while. That don't mind if I read them in fits and starts, in a contorted mess of limbs. Poetry and classics. Philosophy and comedy. Each filling a needed role. I am surrounded by a husband and sons who love me just as I am. Who sit with me and accept me whatever comes. Who make me laugh when I least want to and who give hugs and silence when that is what I need most. I look out the window at the small park across the street. The galahs gather every night on the park and our front lawn. Squawking waves of pink and grey. Freyja comes and gently pushes her head under my arm, pushing and flicking, pushing and flicking until it goes high enough that she can dart underneath, and stick her face as close to mine as possible. I lay on the pillow with whiskers on my cheek and warm, smelly breath, regular and comforting, in my ear.

Life is.... beautiful, joyful, loving, amazing.

It's life. My life. It's not what I would choose. Not for me or anyone else. But it's still life. I have moments of wanting to fight against it. I have moments of despair. And moments, like last night, where I just want the pain to stop. Where I would give anything to have my old plans back.


Life changes. Even without the mark of illness it changes. It's not static. It would be less if it was. We grow and change and transform. We continue on, maybe not as we expect or want, but we continue on all the same. Tired and weary, we continue on.

I am a mess of conflicted thoughts and conflicted feelings. I want to cry and to embrace all around me. I want to hide away and force my way back into the world. I reach out and hold on. I reach out and lose my grip. I reach out and continue. Life is messy and contradictory and mine. F Scott Fitzgerald said,

The test of a first-rate intelligence is the ability to hold two opposing ideas in mind at the same time and still retain the ability to function.

I'll take that at the moment. I'm still functioning and I am still contradictory. I'll win and lose all on the same day, all in the same minute.

Do not go gentle into that good night
Rage, rage, against the dying of the light.

Dylan Thomas, Do Not go Gentle into that Good Night,1939.

I love that Thomas poem. I remember reading it aloud in my English Literature class years ago. It needs to be read aloud and with passion. It still strikes me now. The feeling imbued in the words. But, I think I'll take a gentle rage. A whispered defiance. A slow and steady persistence. A peaceful acceptance and endurance. A knowing that each breath is a sword drawn and shield raised. 

In the midst of the pain it is those little sparks that keep me going. That put me back together. Or at least hold the parts in place.


NB For those who didn't grow up in the 80s, the title of the post comes from a nonsense song Star Trekkin'.

And yes, John Steinbeck was inspired to title his 1937 classic Of Mice and Men, based upon the Robert Burns poem I quoted.

Just a quiet little song today

You worry much about things you don't understand

But don't give up, if it doesn't go with the plan

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.


  1. Love and hugs to you. I hope they can find answers with solutions to your pain when you see the specialist. I went through a lot of abdominal pain and nausea over the past year, and the only thing that has marginally helped was a low histamine diet. I started out eating just one thing that I knew didn't hurt and then slowly adding more things. I could often tell with just one bite if the food was going to make me hurt. I still the pain and nausea, but it isn't as frequent. I'm not saying it is a solution for you, I just wanted to share in case it would help you. I'm sure you get lots of suggestions that are just as tiring as the pain.
    I wish good days full of small miracles and large joys for you. <3

    1. Thanks a better Julie. Thanks for sharing. I'm already restricted on what I can eat (oh what I wouldn't give for a big flakey croissant) as I have a nice collection of allergies and intolerances, but it's just not cutting it anymore. This year for some reason my stomach has turned it about about a dozen notches so now it's wait to see the even more specialist specialist and see if he has any solutions. Thankfully have the good nausea meds now so at least that is helping that aspect. Here's hoping for better days for us all :)

  2. Damn,and here i am 2:06am eastern time as i would start out at your writing's with "life Changes" down to the end,and apply it to my life a "Man" who can relate to clearly to what a woman has written! Having no one to embrace sends my thoughts saying to myself this isn't supposed to be happening to a Strong Handsome Man like myself,but yes it did,and is,as i receive no sympathy even from the one's who turn this all upside down losing part of my blood that separate from immediate family,but at the end of these times i'm alway's reminded who's the strongest here,it's definintly not my hypocrites!!

    1. Sorry things are so tough for you, James. Glad you could relate and really hope for better days for you. You are strong. :)

  3. That got me right in the feels... I know how you feel a lot of the time and yet, we are all different and experience life differently... but life must go on, the small victories are what we live for and what make the good memories the ones we cling to. Mr Grumpy sounds like an amazing guy, My fella is the same, having that support there when you need it is enough to push you through the worst of pain and illness... Love is a small Miracle, it keeps us going, and also knowing you are not alone... gentle hugs from Ireland, Lette -The Fainting Goat <3

    1. Oh Lette you've been to hell and back of late. You're a ballsy chick and have such an amazing attitude but you are so due a break from it all. I hope the trip across to the UK can help you out and give you some solutions. I'm glad you have your man too. With little external help for us, I don't know what I'd do without my tiny nuclear family xx

  4. Hey Michelle, get Mr Grumpy to check your PO Box. I've sent you a non-casserole in the interests of food safety. X

  5. ...and that song! I made my first class do a dance number to Star Trekkin! It's life Jim, but not as we know it, not as we know it, not as we know it! Damn, it's gonna be in my head all day!

    1. HA! Brilliant. It does get stuck in your head. Sorry about that, not ;)


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