Staying Healthy Appetite Anyone?

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What’s the most important thing anyone can do for themselves? Eat Well and Be Mobile? However if you rely on traditional advice and the NHS you will be disappointed. There’s big gap between what I know I have to eat to aid healing and health and the food I actually get to eat. So 16 years into this chronic pathway I have last week begun a food prepping experiment, a little late if I may say so.

As I talked about in my first post Sleeping Beauty the relentless slog involved in cooking and providing food has lost its hold over me but I still need good wholesome nutritious food every day, three times a day and then pudding. This gives me the energy to get up, wash, tidy a bit and then do the important work of the day, my personal projects. Without food this quickly falls into disarray, well not only cos of food obviously, but definitely cos of food. So I made,( with help, thanks Ben,) and froze:

7* burritos, filled with scrambled egg, roasted tomatoes, loads of spinach, and little rashers of bacon. 7 *half pittas with falafel, spinach, avocado pesto, (pine nuts, fresh herbs, garlic, olive oil, avocado) and tomato sauce (homemade), 4* Rice with green beans, spiced pork balls, spinach and tomato sauce.3* Falafel, tomato sauce, spinach and r ice. 7 *small chopped veg bags, ( broccoli, onion, potato, peppers, courgette). 2* chicken breasts marinated ready to roast, sauté, etc. 10 *Muesli (nuts, seeds: chia sesame, pumpkin, sunflower, linseed. hemp protein, maca, lucuma, raisins, chopped apricots. Served as porridge with almond milk, or yogurt, plain of course. Or banana, plums, and berries.4* smoothie mix, tropical fruit, banana, ginger. (Spinach)24* mini fruit pies, with cream, custard, or whatever.

This was an experimental week and I’ve really learned so much. I’m refining the menu, and prepping a 14 day plan, to be cooked and frozen in 3-4 hours, with help again. The biggest lesson was that at my stage of illness or disease, food fuels me in real time, I don’t have the resources of the more robust or fit to miss a meal and this week has been a rare event in that I’ve eaten so well with no work , also less washing up and hardly any waste. I did cook when I felt like it, which was fun again. What stopped me doing something similar before was an emotional relationship to the stuff and bluster of the kitchen, of a something to do, a task to be finessed, enjoyed and shared. A purpose. Living alone with little energy has forced me to be more imaginative, to use my skills in the kitchen, and my knowledge of nutritious food, to be less fussy and more discerning about how I look after myself to the best I can. And finally giving myself the time to work on my projects. Not just dipping in my toe to test the water, finally able to jump right in and immerse myself in the ideas and passions, as they come and go.

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………so whats the big picture here? No appetite.

that’s a problem not easily solved, drugs, depression, fatigue, loneliness affect the capacity to want to eat. All things which a chronically ill person contends with daily.

Some of my prep lies in the fridge and freezer uneaten, vegetables not prepared go mouldy on the counter top, days and days cooking and yet no closer to the YouTube promised 2 hour prep for 14 days meal. My personal projects ignored, my house in chaos.

So I’m accepting my fate, eating the best I can when I can, knowing its never gonna match the vision in my mind, I can’t forget cooking with love and eating in joy, sharing something nourishing, and when that can’t happen I’ll microwave a piece of plastic, and put the telly on.

A Sheroes Quest


this week, while in tooth ache hell, I have been watching a load of films, which all had the theme of the elderly or ill road tripping to find the lost loves of their youth, usually against the better judgement of their close family, aided by the youngest, for “one last chance” at love and adventure.

what a delight they all were, exploring the nature of hope and adventure, corralling others to join in, the right to make personal choices and mistakes, bonding and belly laughs, adversity and opportunities, love in unexpected places, and with it pain.

The seemingly random theme had been triggered by an old friend recalling one such youthful trip of ours, where I too had been in search of a particular man, in a split screen camper van and a whole bunch of friends setting off into the night with vague clues and purpose.

Remembering from the here and now it was unusual, special and a bit wild, we friends christened ourselves with heroic nick names, took mind expanding drugs, headed out on our S/heroes quests, chasing the possibilities of life , decorated (fashion), sound tracked, ( bands and musicians) and passionately embraced (love affairs, betrayals, one night stands).

I burned some bridges and built some, I feel quite proud of myself, my memories, my own experiences, I can’t now walk more than a few steps; had a wheelchair delivered yesterday, how ever the richness of the minds eye still makes life a blissful, beautiful, magical quest. Laughing at all the things that happened, lots of crying over split milk, and as my isolation grows the reality of expressing my own personal freedom reveals its true colours, no not the shame of chasing a man I met tripping at a festival, but the ancient themes, the archetypal call to adventure,

and just like the films, of last chance loves, and disabled adventurers there is always one more quest, one more Last Go, on and on, so watch “Grandmas Wedding”, and be glad that life doesn’t give up and all we really have to do is attend. Whatever we think at the time.


now I have myself only to answer to I’m surprised how much has fallen away, slap dash about brushing my teeth, getting dressed, washing generally, hair now on 8 weeks, eating standards.

I feel like I’m in mourning, for the world that’s passed, nostalgic about the vibrant Ottoman empire and the Aztecs, British street food and house parties. I wonder sometimes is it because I feel my life so often close to its end and I am merely extruding my personal anxiety and sense of loss ,

or is it a reality, a cold hard data stream of systemic systematic failure, le grand homogenisation, industrialisation the good old end of days, the kali Yuga doing its thing. Does anyone about to leave this mortal coil experience a yearning for the way things were, cos of course, you know, you are in it, either potentially future wise or actually was part of it, so course it was better, no ego much.

managing expectations part two

I wasn’t expecting the process of mourning to increase in intensity. I thought it’d be some zen like nirvana, but instead I’m wracked by uncontrollable bursts of tears, I feel like a bear with a sore head.

I am in isolation because I don’t fit the outside world, I’m too slow, my breath holds me up till the situation has moved on without me.

In my own time and space all are welcome and yet few want to be there.

I’m looking through so many veils that I am neither seen beyond my difficulties or can see beyond my difficulties.

the advice comes pouring in, to obfuscate the real.

Winter is still here.

I haven’t been out for two weeks.


Sleeping Beauty

Turns out we don’t all live forever and other happy endings…and this is the cycle of life, and natural, but I do wonder what to do when I get up now…..

Should I bother? The question I am  facing is this:

When all has been stripped away, the husbands the children the ambition the future, however you found yourself here, and whatever age, you must feel what was the point? Or more domestically what IS worth doing?

I look at my son, home from Uni (✔️) who’s life couldn’t be further away from me than it is in time and space, yet like two photons at the start of the Big Bang heading out into the billions of years separation we still respond in unison,very quantum,✔️

Yet his coming and going is very unsettling, our time is done in the physical world, I can barely make it to the bathroom let alone engage with him in the outside world. After a week of action he’s restless and off early back to his life (✔️)((sad face)) …… and for the first time in 20 years or so I didn’t care if I made us food or not and it was with heavy heart that I experienced that lack of motivation.

Like a rock sinking down into the darkness in a swirling sense of regret, that incorporated every last ambition and dearly held belief and ritual.

The veil of food preparation as love was disabused. Well modified at least.

 So back to the question,  left to my own devices, on waking I engage the other hidden entity, buried deep within the folds of that deep veiling: the engine, the heartbeat, the light which has shone on undiminished by ignominy or exile. Forgotten , ignored, now resurrected. What does she suggest I do?

If I listen really carefully to that tiny whispering voice I have an authentic day. Even on a bad day!✔️

Keeping on keeping on

…. so I started this blog as with every new venture full of excitement and inspiration, in my minds eye I saw myself have new and insightful things to write about every week, and would end up writing a weekly column in the Sunday Supplements, and be invited onto every hip new podcast going, maybe a novel? Why not every one else seems to.

In my heart I know I have a an eight week life span for most projects, from historical analytical data, that’s eight weeks from start to finish, so I’m half way through. Maybe…

In the earlier course of life I had ideas which I would put in escrow, all for another day when I wasn’t so busy grappling with an active and full dramatic life, but now what I have is the thoughts themselves, in the cold hard light of the today, do or die, there is no more time to put things off, there are no active relationships to take up my energy.

What’s interesting about failure Elizabeth Day?

I guess this is the point at which in another life completing projects and have some results would have bolstered my self esteem. I don’t feel as if I did, although that is a clearly subjective and not necessarily true. When I muster the courage to speak these words aloud to someone I am shot down in flames with a litany very true and real accomplishments…..ummm, yeah I gave up some pretty big opportunities though, which I just cant seem to cut ties with, emotionally taunting me with their Paradise Lost-ness.

Slipping away has great allure for the difficult stage in a project. You can turn your back on it and get on with the other life, as simple as that.

However what stops that happening for lots of people is some kind of support and encouragement. I’m not talking about the outliers here people, we all know someone who thrives in what ever conditions they are in, motivated, driven….. but most of us need a network, a blueprint tested or a precedent witnessed, when things reach a certain stage of development. Or an existential crisis takes hold.

Often what stops me is a quest for perfection or “bestness” but really unveiled that’s more about not really thinking what I’ve done is good enough, or will be successful or well received.

Clearly I am a “glass half empty” kind of gal. But also maybe just a really fast thinker.

Getting back to yourself

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To say I’m not affected by the image of myself as chronically ill or disabled would be untrue. But in reality its the fact of it which I really resent. What people think or how I’m judged can be a shallow annoyance. But a powerful thing. I feel written off. I become someone either to help or avoid. Not someone to reach out to. And I too don’t feel able to reach out either. At various times of life, I have been embarrassed, guilt ridden, terrified, hopeless, helpless, useless….valueless and in the way. But mostly felt burned.

Being true to yourself : a must have I think if you want to survive the gruelling days of chronic disease management (sometimes called life), there’s not much wiggle room and it requires overcoming societies expectations, family and friends, but more importantly your own.

so what to do… I have diseased lungs so it takes forever (well 5/6 mins) to recover enough breath from getting in somewhere, like a shop or a café, or a hospital, to be able to speak. This is a very difficult part for people able to walk in and get on with buying, looking, talking straight away. A mighty big thank you to everyone for even trying.

I’m really trying to rediscover what are my preferences and passions, after the years of overcoming the deep depression, and long cycle of allopathic treatments and culture which follows a diagnosis, so that when I can voice my needs, they have a chance of being met, rather than just politely , and gratefully taking what’s offered.

When so much of your life relies on others for basic needs, its easy to forget what only you can offer yourself.

A Brief History of My Time

After a diagnosis in 2007, I was told by a 20 something Dr. that I had probably two years to live, and laughed when I mentioned my work, saying “oh you won’t be going back, you’ll be spending a lot of time here while we try and figure out what’s the best option for you”. Flicking her hair and really terribly excited.

As a single parent to a seven year old son, just back into full time work, which I loved and was good at, her 15 minute consult, which I had sat in a corridor from 11.15 am (appointment time) to 7.45pm to hear was devastating.

I accepted my fate and began “le grand tour” of hospital consultants, and their minions.

I’m sitting on the sofa and suddenly realise I’ve been a bubble for maybe 20 minutes, shake it out and remember making coffee,

all the people I know in person, with chronic conditions have some aspect of terrible lifestyles, diet and habits, but don’t really address it. This is the real enemy in many cases. The diagnosis brings with it many charms, validation for the suffering you’ve been through, a drug filled melee, softening the mind and resolve, thank you Oromorph, offering some relief, armies of staff and clinical and hospital care, at least here in the UK, and a clearing of the confusion of what’s happening to you.

sadly what happens next can come as a bit of a surprise,

I turned into a toxic toad, massively overweight due to steroids, a moon faced triangle of flesh, who only slept badly and drank at least two bottles of wine a night, wired and angry, the pain had gone though,(happy face)

Half way through 6 months of chemotherapy I kind of woke up. My mind had been planning it for a while, picking up clues here and there from various sources. What had I been waiting for?

In two weeks I was completely transformed, looking like a different person, so in that two weeks I had stopped taking all my painkillers, and began green juicing, herbal raw food cleanses, drinking enough water, no alcohol, no caffeine, skin brushing, no meat and fish, no stress, (well that’s another story.)

I didn’t stop the chemo though. I finished the course. As far as I was being told I had a chronic debilitating lung disease, an autoimmune attack causing scarring on my lungs. I was oxygen depleted and at the same time had a connective tissue disorder causing severe debilitating pain in my joints, so…. I was able to stop the infection by taking control of the factors causing an internal environment so toxic that the body’s system imploded, generating scores of infections to course through by precious body.

I learned so much about healing myself, and the world of alternative therapies that I thought I had become a master(sic), using myself as a guinea pig, I would try almost anything, I was a personal folk hero to myself for boldly rejecting the allopathic western model of healthcare, and became increasingly bold , in order to reach nirvana, err I mean a cure, for myself. I almost nearly did it.

People who knew my story supported when they could , and I had a grand old time, getting better. New foods, new lifestyle, new friends and colleagues, yes I became one if the wounded healers so beloved of folk lore, but not really, never really took off, obviously, but it did keep me going well past my newly ascribed 2 year expiry date.

I halted the infection enough to remain stable in my out of breath permanently desaturated state until 2015. I caught double severe pneumonia, and was told probably won’t get out of this one. This was the first time I had accessed allopathic treatment in six or seven years. And was testament to how far I had fallen, how words not deeds had become dominant, I had lost the plot.

I remember thinking oh god I really made a mistake, oh boy this is it, a sinking fast condensing of my life, and no I didn’t pray to god for a stay of execution, but I did accept it and with that acceptance came the sure knowledge it wasn’t my time yet, I knew my body better than that.

So I made it out alive and damaged, enough to need full time oxygen, 24/7. At the time I was just grateful, but honestly now I feel so gutted that I didn’t resist and heal enough to not need it or cope without it.

So up to date. I’m an integrated care patient, I use and rely on Alternative methods of healing and also what is useful from Allopathy. I have great respect and love for both.

Bad Dog Day

….perhaps you know the one, the day before was great, yoga session, friends visiting, positive phone calls and errands, food delivery, great night of TV and planning ahead, then BAM..

6.39, you wake, agitated and hungover,(oh did I forget to mention the double shot of Brandy, the shame), and all reasons to be cheerful sucked out by the night. The energy and inspiration all washed up and depleted, a grim winters day, wind howling, light already fading here in the North West, I want to sleep on but can’t, I want to sleep on in perpetuity, I could….

every move I make the dog trips me over, the veil of positivity and logic is transparent today, I can only walk two or three steps before I ache for oxygen, the toilet door catches my tubing, and pulls painfully at my nose and ears, the green lights in my world turn to red. I want to run out the house and escape the encroaching crunch down, the loud constant hissing from the oxygen, the dark damp mildewed walls, the washing up, the piling rubbish and laundry. I sink down to my knees and wait for something to change, all by its self.

I lift my head, my hands and feet blue and numb from the cold drought circulating round me on the floor, t-shirt and pants, tears fall, no help arrives, no mummy, no body.

this the lesson I should have learned in childhood, self soothing, in womanhood, self soothing, marriage and life, self soothing.

so yoga pose baby steps, crawl, pull, stand, washup, sun in my eyes, blinding me, hot water on my hands, I feel less hopeless, yes, life’s not worth living, body doesn’t know that though, so keeps getting what it needs, water, hot drink, food, defecation, ok, I’m back….

sb #3

Honestly I take a certain pride in being what I call “a living sacrifice”, pretty much like a “living deity”, but just with a different angle (call me big headed, I dare you) but you know whatever it takes to get thru’ the day is alright with me. No judgement. So I’m swanning around my bungalow like a faded film star, glory-ing in my trees out back, loving the Cote d’zuresque Marina at the bottom of my garden…..

seeing the divine Goddess within has helped me cope with the unjust affliction I am shouldering for the rest of humanity. And I know…. I’m not the only one.

I remember sitting in the car one day looking at all these amazing women who, unlike the adverts, don’t looked groomed and calm, funny and alluring. Out shopping , or picking up children, maybe strung out, or busily being perfect, working, cooking, cleaning and nurturing anyone, but developing tics and other leakages of stress, ahh…. stress that monster in disguise. Ill, overweight, underweight, bit of both at the same time and everything in between. Pretty much me 20 years ago,” bringing up baby”, and the divine comedy being played out is our invisibility, our low status, our vulnerability, victims of violence and sexual predation.

imagine if you will just for one moment a world where we were appreciated and respected, nee worshipped for the magic and power we bring to the table. Where a rape or threat of violence would be inconceivable, and teenagers telling their mums to fuck off would have their tongues cut off ( no, never happened to me, my son still has his tongue at 19), it is this very humble day dream that revealed to me the spark of divine life within me, promoting my status to one of “living sacrifice”. I mean I thought all that other stuff had been hard, dysfunctional family, terrible marriage, and the long road of parenting alone, but it was almost like a training, a preparation for the end game.

Life doesn’t get better, it gets worse, and we all head into abyss equally reluctantly under whatever circumstances. However, Life is good, even at its worst. So I wake up realising today is good because I woke up.

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