MIA

[Image: a woman kneels on brown carpet, forehead touching the ground in the yoga pose known as Child's Pose or Balasana which helps her gastric pain. Light shines from the window behind her, reaching a chair covered in a bright red throw rug.]



Eight minutes and six seconds. That's when my exhausted body said hell no. I lay on my yoga mat listening to Adriene, from Yoga with Adriene instructing me to massage my feet. A panting blob lying on green rubber matting not even capable of a proper savasana. Autumn sun was a lovely idea. The birds were chirping, the chooks scratching away in their yard. Even the workmen that have been at my neighbours for weeks were silent. Freyja came over and nuzzled my pasty face before deciding to take a poo less than a metre from my head.

And in that moment, the last couple of months were summed up neatly. Short lived joy followed by a large foetid mustard-coloured dog nard from which your slow and exhausted body struggles to escape.

I'm not quite sure what happened. The usual illness malarky was muddling along, when suddenly it all went pear-shaped eventually ending in a long overdue ED visit and a protracted recovery phase that still feels in its infancy.

I've tried repeatedly to take a deep breath and step out into the world only to be hit hard with payback. I've dressed up and gone to a cafe only to be forced to watch Mr Grumpy eat while I swallowed down vomit and ate antiemetics. Sit out with my chooks and recovery sleep is measured in hours. Yesterday I went out for 20 minutes, saw some cows in the paddocks next to our housing estate and today I woke up struggling to breathe or lift my head from the pillow.

Dip my toe in the world. Tell myself I can push through. And my saggy, stretch-marked, arse is where I keep on landing. Payback comes in metric fuck tonnes these days. And it can no longer be ignored. My droll husband tells me at least I look sick now, but even he finding little in that line amusing.

I have a collection of vintage cutlery. In amongst it all I have several tiny silver, salt and mustard spoons. Smaller than my little finger. My spoons have been in short supply of late and those I do have are reminiscent of those tiny salt and mustard spoons. So I've hermited. Built myself a pillow fort and tried to simply ride it out. When existing is hard the rest of the world has to be put aside to focus on trying to heal. And of late it's been pretty bloody hard.

I've tried to put pen to paper or fingers to keyboard and realised there was nothing. My brain too flummoxed to conjure up a coherent thought let alone hold that thought, coordinate fingers and get it onto a screen or piece of A4. Reading has equally been beyond me. And I have been bereft. Two of my greatest pleasures gone and my world far more claustrophobic.

I have known that I have cognitive issues for some time, more than just regular old brainfog. I had a brainSPECT scan last year that confirmed moderate impairment in the blood flow to my left temporal lobe, and mild to my right. I haven't fully processed what it all means, but it's effects are clear at present. My reserves are piss poor and now documented in a series of rainbow coloured scans. Add in worsening health and it would seem those reserves have been wiped out.

To respond to emails or messages is difficult in the extreme. Primarily because even reading them is exhausting. It's a weird place to be. That which was once my strength is muted. I have to believe it'll come back when this patch has passed. Losing my words isn't an option I want to contemplate.

This is the most I have written in over two months. It's been a struggle. But it's better than the usual staring at the screen, perplexed and frustrated, impotent hands poised over the keyboard, that has marked the last couple of months. So I'm taking it as a cautious sign.

The pain in my arms and wrists and the exhaustion that have come from these few words are worth it just to see them sitting there before me. They aren't perfect. But they exist. A small piece of me out there in the world again.

Michelle

I wanted to say thank you to everyone who has sent emails and messages of support and concern. I haven't been able to respond and sometimes even read bar the first line or two, but those messages are much appreciated. I'm not really on social media at the moment except for a bit of Instagram where deep cogitations are not really required. I'm not sure when I'll get back on properly. I need to be ruthless in my energy usage to try and get on top of this again.

"Come on my friend

Drink to good times

Golden wishes

To your health and mine."

(PJ Harvey, You Come Through. 2004)

Reinventing my Routine: Finding What Feels Good doing Yoga with Adriene.

Earlier this year I was featured for the Digital Writers Festival as part of a collaboration with the lovely Madeleine Dore from  Extraordinary Routines. I discussed my day and shared photos of my writing routine. My routine had elements that I tended to use every day but I had no real timeline for how my day would play out.

Living with an unpredictable chronic illness like Dysautonomia, plans and strict routines can be more depressing than helpful. Each time I failed to meet a deadline or complete a To Do list (or lost my To Do list!) I beat myself up. A trait I learnt back in the cradle. I wasn't giving myself any compassion or understanding and stupidly ignoring the physical impediments that were frequently out of my control. In writing out my day I realised how fluid my routine had become. Apart from taking medication and my morning shot of caffeine there was little structure.

This year I have found it hard to find a break in symptom flares. If it's not Dysautonomia it's a migraine, or a flare in my gastric pain, or a bowel that stops working, or my heart throwing up new problems, or....the list has been never ending. And with that I have lost most of even my tenuous routine. Recently I realised the lack of routine was starting to affect me negatively.

When Madeleine recently asked the question,

One of the most delightful things about rituals and routines is how effortlessly they belong to our days and shape who we are. That morning coffee, the way you tidy your desk before you get started, that sip of wine after work where you let everything escape from your mind 🍷🙊 But sometimes routines and habits are stubborn. No matter how many times we mark something on our to do list, we just can't make it work. We can't rise at 6am, or write those two pages of creative prose every morning. We miss coffee dates, skip exercise and procrastinate. We want to hear about that one habit you wrestle with. Comment below and be in the draw to win a double pass to an Extraordinary Routines - In Conversation event at @emergingwriters ✌️

A photo posted by Extraordinary Routines (@extraordinary_routines) on May 20, 2015 at 4:05am PDT

yoga and mindfulness (which I'll discuss in another post) were two aspects that came immediately to mind.

Now admittedly my neuromuscular weakness, disc problems, and autonomic issues make activities like yoga difficult. I can't stand for long, or frequently short, periods and holding certain poses ends with my weak muscles shaking and giving way. Not to mention exercise intolerance. But I know from experience even simple yoga stretches make me feel lighter and in turn calmer.

Earlier this year I was alerted to a 30 Day yoga program run by a yoga teacher from Austin, Texas.  30 Days of yoga with Adriene, made me realise how much I missed the practice. What I liked most was Adriene herself. She is relatable and easy going. Her motto of Find What Feels Good resonated. This wasn't a program where I felt like a loser when I couldn't do the poses or finish a full day. I didn't feel bad when I skipped a day or two as my body played up. And I did A LOT of child's pose when I was unable to keep going or needed a break. But at the end of each session I felt like I had achieved something.

And then I stopped.

Life, or more my body, became complicated yet again and I didn't keep going.

I had subscribed to Yoga with Adriene on Facebook but just flipped past the posts as I fell into a familiar, comfortable, apathetic, life sucks, pouting, mode. Then about the time Madeleine asked the question, a link to Adriene's video for Bedtime Yoga* popped into my feed.


 
At a time when stress and insomnia were taking turns to give me atomic wedgies, it stood out. So I clicked on the link and fumbled my way through the sequence.

And I enjoyed it.

I didn't sleep better, but tension was lessoned. And I finished the whole sequence. A small achievement for sure, but it's surprising how good that can feel. So I did it the next night. And the next. And the next. I may not have been sleeping but I was more relaxed. Given that my insomnia is a creature of years I don't expect that it will disappear after a couple of weeks of yoga, but I am enjoying the process.

The sequence is easy and as ever Adriene is encouraging and relaxed. Find What Feels Good resonates throughout. Plus she makes a joke about her "rack" and that made me laugh. A yoga teacher that is not only relatable, not cracking the whip because you don't find your inner light or do a move perfectly, and makes a boob joke? That suits me to a T.

(Must get one of these)

Recently I decided to incorporate her Morning Yoga sequence into my routine.



Similar to the Bedtime routine it is easy and slow. I have tried other morning routines in the past and they were so quick and energetic with little time between moves. And filled with jargon. And I quickly gave up. On the bad mornings (well really it's more a brunch yoga than morning yoga, for me) I only do the lying down movements and only the bits I can, but at least it's movement and I can even do that in bed.

Plus all of it is free on Youtube. And free is a priority for those of us who pretty much need to sell a kidney just to pay for our continual medical needs. Given I can no longer drive, it also takes out the need to organise lifts to yoga studios, yet another bonus.

My routine has expanded and is now bookended by these two videos. I lie here on my yoga mat in my lounge room in country Australia and follow videos from Austin, Texas. And feel lighter.

Now if only I could stop Freyja from coming to check on me when I am lying on the floor with my eyes closed. An unexpected face full of Great Dane breath or a forehead lick does break through the relaxation aspect a bit.

I'm working on other parts of my daily routine. The balance between structure and flexibility can be hard one. Especially when you are living with complex chronic illness. But factoring in a bit of self care during the day is worth it. Even if I forgot for a while.

Michelle

*As always, before beginning any exercise program you should check with your doctor that you're okay to start. And not everyone will be able to do even these easy yoga poses. And that's okay. Mix it up. Do what you can. Don't force it. As Adriene says Find What Feels Good.

Sing it Nina, Feeling Good. This is one of my favourite pick me up, belt it out songs. My scatting needs a lot of work but I always feel like I can kick some serious arse after singing along.

Feeling Good, Nina Simone by mrfnk