Monday, 18 August 2014

Ain't got no/I got life

(A sunbeam hit my Dorothy slippers and Freyja and I both sparkled. 
Sometimes it's the little things.)

I've been trying to actively pull myself out of the funk that's sprung up around this latest exacerbation. Being stuck in 4 walls for weeks on end and perpetual pain are not all that good for my mental health and I may be going a little stir crazy. I often think of those pictures in old zoos, where a tiger would be seen pacing up and down at the bars of it's cage for hours on end. That's what it feels like, although my pacing lacks the languid grace of a top feline predator. But I may take a feeble swipe at anyone stupid enough to pass close to the bars, in my directionless irritation. Which reminds me, my 'claws' seriously need a manicure and lets not even mention the abomination that are my pedicure-lacking lower claws. Shaking hands and nail art are not good bedfellows. But I digress.

One song has continued to pop into my head in the midst of all this. Nina Simone singing Ain't Got No/I Got Life.

I have been a huge Nina Simone fan for a long time. Do I Move You and I Want a Little Sugar in my Bowl, are two of my all time favourite songs. But Ain't Got No/I Got Life is one of those songs that is just right at times like this. From memory it is a partially a combination of two songs from Hair. But don't quote me on that. I have never heard two versions that are the same. The one I have in my play list is slightly different to any of the live versions I have seen, and none of those are exactly the same either. Verses are added and subtracted in each. But the basic theme is the same. It starts by listing all the things missing and then takes pleasure and in turn power, in listing all the things that are still there. They are simple things. And I like simple. There is so much joy in the simple.

Got my hair, got my head
Got my brains, got my ears
Got my eyes, got my nose
Got my mouth, I got my smile

It's so easy to get caught up in all the things we don't have. So easy to remember the loss, the hurt, the lack. Stuck in bed in pain means I have been ruminating on life. And I'll admit some of those ruminations have been about the negatives. It's so easy to see the hurts. They stand out like a flashing neon signs. Or maybe those long harsh fluorescent lights, that buzzes, ticks and flickers, doing it's best to make you break. But the good things? They can be so hard to spot when everything feels like a loss. But I'm getting there slowly. Some days are better than others. Some days are best forgotten. But I keep trying. 

Seeing the positives and finding joy are a little like riding a bike. Even if you haven't done it for a while you don't really forget how. You get back on. Your feet slip off the pedals and there are some quickly aborted starts. But after a wobbly beginning and a couple of practice rides up and down the street, you are back riding once more like you never stopped. Once you retrain your eye and get in the groove, you can start finding them in the smallest of things.

I just need to remind myself that I can. I just need to remind myself that there are many things that are good in my life. Little things. Dotted throughout the day. That add up and make life shine.

As Nina sings, 

I've got life
And I'm gonna keep it
I got life
And nobody's gonna take it away.


Do you have a favourite Nina Simone song? Or is there a particular song that helps you refocus and start the road back to finding the happy parts of life?

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. Sorry Michelle that you are having such a bad time of it. I just got through three days of elevated pain and I'm so glad it's behind me for now. It's a repeating pattern so I don't get to think it isn't going to happen again -- although I live in hope. I get angry when the pain first descends. No one would know I'm angry because it would hurt me too much to expend the energy to tell anyone. I think that I probably become angry (although I don't like feeling this way and it's a nasty confirmation that the next 3 days are going to be bad) because what I'm really feeling is fear of the pain. I'm expressing fear as anger to myself.

    But the better days come, I remember. On Sunday I finished with a three day migraine pain. I was able to watch modern family and my husband made a joke about something I said about the show. I laughed out loud, something I could not do for 3 days, and remembered that life was good right at that moment.

    I've been stuck at home too. With husband telling me I need to get out. I know I need to get out. I want to get out. The longer I stay here the more unfit I become but truthfully, I'm not fit enough to deal with 'outside' anyway, at this time.

    Your post was a nice reminder that good things are interspersed with bad things but sometimes we just have to look for them and see them.



    1. Sorry to hear you're struggling too, Blue. "The longer I stay here the more unfit I become but truthfully, I'm not fit enough to deal with 'outside' anyway, at this time." really resonates. Mr Grumpy has given me an open invitation to leave the house whenever I'm up for it, even for a short burst, but dealing with outside can be incredibly tiring when you are already exhausted and using all your energy to deal with being ill or in pain. I think pain is such a hard one, in the moment it can be so overwhelming, when it 'passes' you have the realisation that it is highly likely to come again. Do you make the most of the lull or do you use it as time to store up energy for the next burst? I think that's the head space that does me in a lot.

      All we can do is keep trying and keep remembering the good and give ourselves a break when it doesn't go how we want. Or at least that's what I tell myself. :)

  2. This is one of my favorite posts on your blog (I have been reading it for a few months). Thank you for sharing this.

    1. Thanks Danielle. Glad you liked it :)

    2. I got out of the house today. Walked down to the local shop, all of one block, got very weak and heavy leg-ed on the way back, climbed two floors to my apartment and now lying on on the lounge wondering if I got away with it, or if I have just started another crash that hasn't hit me yet?

      But the walk to the shop felt nice and interaction with the people who own the shop felt a lovely normal.
      Good to feel those things. Although all that time, in the back of my head, is the voice, 'how long is this going to last? And will I make it home?'

      Talk about this crazy little thing called POTS.


    3. Is it weird that I got really excited for you, Blue? Love to hear when the little victories happen. Fingers crossed for you payback won't be too bad. But still, totally stoked for you :)

  3. I have scars from when I first learned to ride a bike. I crashed into a chest-high chain link fence, the kind that end in sharp barbs where the wire was cut halfway through the diamond? They're faint, but still there after all these years… and I imagine that the scars and memories I carry from learning to ride my bike in this regard will stay with me for many years to come as well.

    My heart goes out to you. I understand the "laid up in bed for weeks because of pain" more than any person has a right to. This should not be, for either of us, and it's not fair, but it is interesting to see the mental shifts and processes that happen in people when faced with unrelenting adversity like this. It's almost impossible to stay on some middle ground, I think. Either it breaks you or you become wise and strong. Clearly, you've opted for the latter, because even though you have a tough time of it in general it is obvious that you are in no way broken. (Well, spirit-wise, anyway. It's also obvious that your body is definitely broken, my poor little sausage!)

    Love the sparkling picture of you with Freyja. Very symbolic summary for your post, I think. Darkness closed in thick all around, but a chance ray of sunshine illuminates the intentional act on your part to be positive, and it lights up the world around you a bit. And even though it's dark for the most part, your faithful companion and supporter has never left your side. Very beautifully illustrative.

  4. I so resonate on reading about your process with your latest exacerbation. So sorry to hear you're in the midst of it.

    I'm in week 3 of an exacerbation (fatigue), working with not reacting or going into fear, on enjoying what I have, and appreciating all the practice over the years that makes it easier so far, with this particular round (some days more than others, for sure). The practice makes me very grateful. As does your post. This theme of how to keep being - with ourselves with compassion, kindness, and self-love.

    I never heard Nina Simone until today. Listening to her, WATCHING her, and getting the truth of her words, and yours.... of our journeys on how to keep finding the beauty in life, in the moment, brought tears to my eyes. Tears of appreciation and feeling connection, because suffering takes so many forms on this journey of being human, regardless of our circumstances.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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