My Menopause is Wise

My menopause is wise

I don’t care what he thinks of my eyes

I roll them at him and I sigh

I am weary of parting my thighs

My menopause is wise

 

My creativity is on the rise

My spirit strong and free and blithe

I will no longer part my thighs

My menopause is wise

 

This energy is mine

Wider than the skies

You cannot part my thighs

My menopause is wise

 

Sex had me deafened with her loud and sweet cries

Children and survival provided alibis

And over and over I opened my thighs

But my menopause has made me wise

 

Sweat drip mood swing hot flush flash

Life change pace yourself headed for a crash

All you ever did was everything but much of it was rash

So hydrate, eat clean, close those thighs

And listen to your menopause, for she will make you wise.

 

Where do we go from here? (“is it down to the lake…”)

Water is life.

Lake Zurich from train

Since I was a child in the 1970’s (and, indeed, before), scientists have been warning about climate change and global warming. It’s here. Combine that fact with the constant threat of fracking and our collective marriage to fossil fuels and we are pretty much fucked.

Given that our world ‘leaders’ and the real fat controllers behind them appear to have no interest in either saving the quality of life our species now expects or stepping up to responsible guardianship to retain food and water and comfortable living environments for the other fauna (and flora) of this planet, how much can we reasonably do as individuals?

I am fifty. If family genetics are anything to go by, and despite health problems, I probably have between twenty to forty plus years left here. Mik and I are looking into simple water solutions (water butts, sand filters etc.). We are planting food where the chickens lived (they take up too much room and eat too much food for the return).

We do not run a car and have taken other baby steps to contribute less to the problem and feel more part of a solution but I suspect without political will these are merely feelgood manoeuvres.

What is anyone else doing? What can we do together? I work full time and am finding it difficult to find time to make the switch to homemade cleaning products, but switch I must as palm oil is disguised as so many other things I no longer know what to buy. We know from where our food comes and prepare meals, 80% if not more, from scratch ingredients.

What next?

This is not intended as a negative post. I am being realistic about our future. We are where we are. So let’s embrace life and our responsibilities and show our children and grandchildren how to continue our best lives on our beautiful home..

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more about my story here

and a bit about some of my health issues here

More than a uniform

Following a year off salaried work due to complex health issues; a very brief spell in a call centre and a disastrous attempt at working in a small office rife with bitching, politics and bullying, I applied for a job in customer services/sales for a railway company. The position was to be temporary for one year, while the company downsized ticket offices and I thought about what exciting career move was next.

Having managed a toy museum; designed and run educational sessions; sung on the southern French circuit; hosted all manner of professional events; worked with homeless, mad, addicted and bad; I feel I have a lot of skills and experience and was planning to go back to something either exciting or ‘worthy’. People asked me what I do – “Oh, I just sell railway tickets, for now.”

How I judged myself. Wearing a uniform. Working for the man. ‘Just’ selling tickets and giving travel advice. Working for a sometimes unpopular company. How I had compromised myself.

My time at the railway was extended for another six months.
This was lucky as I had forgotten to find something else to do.

Now my time is over, I have decided what I’d like to do next. It’s an epiphany for me.
So, I am going away for a fortnight and then I start my new permanent position doing something I really love, am good at and that affords a decent quality of life. My new career is….
Selling tickets for the railway!

I’m off to a different station on a permanent contract and I have chosen to do this. I have learned so much about myself (and others) in the last 15 months. I had no idea I was such a snob, for a start. What is wrong with giving great customer service, calming anxious people, finding solutions, de-escalating fraught situations, saving people money and seeing them off to their jobs, family visits, holidays etc? Why did I spend a year thinking I should do better?

Why did I think that a certain kind of person did this job? My colleagues are kind, selfish, funny, dull, fascinating, deep, shallow… you know, just people. Mostly though, they are really interesting, pretty damned intelligent, humorous and kind. It does take a certain sort of person to work with the public in this way, in a beleaguered industry – to remember that the frustrated traveller is angry at the uniform or the surprising cost of a peak fare or unexpected lack of service when things go wrong at the last minute and they have to catch a plane, be at a job interview etc.

It also takes a special kind of person to remain calm and kind when confronted by an unreasonably angry customer – I repeat the phrase “take nothing personally” to myself several times a day. I also remind myself of the times in my life when every last penny had to be accounted for – for food and rent with nothing or next to nothing left; when life was a struggle; when I was life-threateningly sick; when I had two children under two and no clue; when I was in an abusive relationship; when I was depressed; when fatigue was my constant companion; when I had a bad day. I remind myself of those times when confronted by a rude person as I know I can present as very rude when I am frightened, depressed, tired or generally struggling. Take nothing personally.

The job requires boundaries and staying grounded too – it’s all very well being proud of great customer service but that does not mean tolerating abuse or unreasonable behaviour. It does not mean giving in to requests for free replacement tickets because ‘I’ve lost my ticket but here is the receipt’. (Friends – if you buy a train ticket then treat it like cash. You get a ‘receipt’ when you withdraw money from the bank but if you lose a twenty pound note the bank won’t replace it because you have the payment slip. Neither will we replace your ticket. Look after it.)
It means understanding empathy – I can feel your anxiety, anger, intoxication but I am not stepping into it. Sometimes, I have to physically step back very slightly before continuing a conversation to remind my body not to play that game! Then, I subliminally invite you into my calmer world and sometimes I am effective.

Job satisfaction is not entirely down to interpersonal strategy. Planning long-distance journeys with a number of different fares, companies and changes plus the money handling part of the job is great for brain function. “Mathematics is food for the brain,” says celebrated American maths professor Dr. Arthur Benjamin. “It helps you think precisely, decisively, and creatively and helps you look at the world from multiple perspectives . . ” Regular maths calculation is a brain exercise that is shown to improve and retain memory function as we get older.

To summarise – I am writing this piece for two reasons.
Firstly, for myself – for the part of me that continues to judge my decision to stay in the railway. I am happy, the pay is reasonable, the conditions are comfortable, I am happy, the holiday allowance is acceptable, the free travel is fantastic and I am happy. Also, I am happy. I love working with the public, I love problem solving and diffusing. I love cracking jokes, showing sympathy, being quiet, speaking French, hearing your stories abut visiting your grandson for his graduation or helping you getaway for a much needed break. I love saving you money if I can. I love seeing the green light when I count the money I have taken and till balances. I love it all. So, my inner saboteur judge can shut up and suck it up. We need good people in ALL the jobs – not just hospitals and homeless centres.

Secondly, for you. So that you know we are so much more than our uniforms. We are parents, grandparents, intellectuals, anarchists, dreamers, writers, engineers, singers, cos-players, jewellery-makers, linguists, degree-holders, scientists, photographers, painters, builders, farmers, engineers, former refugees, historians, poets… people.

And actually, there is a third reason for writing this – to celebrate my colleagues…

You are all so much more than a uniform.

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my story here

Crohns and Colitis Awareness Week 2017 Day 2

 

 

aware-2313777_1920Blogging about chronic disease when one is inured to what others may see as ‘suffering’ feels almost attention seeking. But this is part of the problem, I suppose so I will continue to make my small noise on the subject.

My daughter, who has Ulcerative Colitis, posted on social media that people see her as lazy when she is in fact chronically fatigued. When my mother posted about her multiple surgeries; being held together by pig mesh and the continuing effects of previous over-medication – I cried at the memory of our traumas. All of us, who have these conditions, and especially those who have experienced major operations, are left with psychological scars. These are as invisible as our ulcerated bowels.

Following multiple surgical life-saving procedures I am fortunate to be left with a functioning and mostly healthy internal pouch. I did spend a year dealing with complex PTSD which left me pretty much glued to my favourite place – my Big Red Bed. Like those who call themselves IBD warriors, I could not just give in though. I’ve found a full time, though sadly not permanent, job that works for me. My managers and colleagues are connected to me on social media and I am always aware that I may be undermining my chances of a permanent contract or a sideways or upward move when I blog about or even mention IBD. I do feel we have to talk about this though, as more and more people are falling ill with auto immune conditions. We need to be understood and show that there is understanding.

One of my psychological scars is a constant need to prove my worth, I didn’t care so much before or maybe, as a singer, I felt I proved it differently. Ulcerative Colitis put an end to my singing career and now I feel I have become a slightly needy employee – ‘look what I did, I’m not sick, I’m a great worker.’ I am working on a play in the UK, have co-written and continue to perform a play in France, am making a film project to raise awareness for people with chronic diseases and/or mental health issues, have adopted three dogs and am about to foster a fourth. And still I worry I’m not doing enough. I may not go to the gym or do yoga but in other ways I am doing as much if not more than many other fifty year old grandmothers who work full time. But that doesn’t even matter, the thing we could all do with remembering, diseased or not, is it’s not a competition.  In education when we get exam results many of us want to know what everyone else got so we can place ourselves. The real questions, for tests and life, are:

Did I do my best?

Was I properly prepared?

Am I genuinely interested in this or do I, at least,  need it to further my plans?

Do I feel good about myself?

We mostly take what life throws at us, as a species we are incredibly adaptable. 2009/10 were the worst years of my life – I lost my home, my partner, my singing career, my life in the south of France, my colon and my dignity and self esteem. I wanted to end it. I planned it many ways.

I am still here. Bigger and definitely better. I have a home in the south of England, all those projects, a decent job, a loving relationship, many dogs and a wonderful relationship with my family. I survived. I more than survived.

Life is not a competition. I am not interested in being more or less sick than you. I do not have to prove my worth to society or myself. I do enough.

I am enough.

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Crohns and Colitis Awareness Week Day 1 here

More about Crohns and Colitis Awareness week here

Idea behind awareness raising project here

More about my personal story here

I don’t want to have the world at my fingertips

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I don’t want to have the world at my fingertips…

I want to have the REAL world at my fingertips…

I want to touch grass and take photographs in my mind and I want to talk to my friends about their day and listen to their real stories and watch their mouths move and their eyes light up when they tell me about something that made them smile today.

Sit on a train and everybody is staring at their screens,

“Oh but we’ve never been more connected!” Oh, but I’ve never felt further away from everything. A screen is not a window, it is a separator.

Look out of the train window, nudge the person next to you and say “look on that hill over there, I can see sheep!”

I look at the carriage before me, real human beings with beautiful brains and deep souls, each locked into a device designed to bring us further away from our bliss and further away from each other…

I can see sheep.

by Kat Savage

Crying, dancing and vomiting… confessions of an ambivalent mother.

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I didn’t want babies. I was often unhappy as a child and I didn’t see how I could raise happy children. At thirteen, I declared I would not have children. Ever. At sixteen I said “Well maybe after I’ve turned thirty. But probably never.” At seventeen, I was pregnant.

I learned something about myself, sick in a hospital bed, a few weeks pregnant. I learned that my emotional and physical body disagree with abortion. For me that is, not you. You do whatever is right for you. Always. Despite the Darwinian desire to recreate myself, I was terrified of being a mother. Even stronger than that fear was a certainty that, now pregnant, I had to get on with it. My nature was definitely stronger than my nurture in that instant!

The pregnancy was sickly. Morning, midday, afternoon and night sickness. And not just the first trimester. I spent much of it in bed. When I ventured out, I had to find new routes to town as we lived in a bustling almost city, full of takeaways belching out nausea-promoting odours. I had to avoid the bus routes too. A bus in the Eighties emitted a filthy fuel stench that encouraged in me a street-vomiting session. Mostly, I stayed home and cried. The father brought me weird herbs and concoctions designed to temper sickness along with dry toast; arrowroot and such. I vomited. And I cried.

So there I was, eighteen and a mother. Having spent the entire pregnancy convinced that I could love a Barnaby but not a Naomi (intended names for first child) – did not want the responsibility of a girl, did not love myself enough to create a mini-me – I birthed a daughter. Her father doted on her. He changed nappies, he sang to her – he took part in all of it bar the breast-feeding. He even got a job.

My emotions were all over the place. I fed her. I cried. I played with her. I cried. She slept, I stood with a damp finger under her nostril to make sure she was alive and I cried. She cried. I cried.

I think it was the day I gave up breastfeeding her that I fell pregnant again. This pregnancy could not have  been more different from the first. Now, an experienced old hand at motherhood, Naomi having reached the ripe old age of one year with no bruises; state intervention or death, I was ready. I wasn’t sick. I didn’t cry. I got on with looking after my little one and my body. This pregnancy saw me dancing in the snow at seven months, a bump so neat you couldn’t even tell from behind. The only dampener was the the fear, the exact opposite of before, that I now could never love a boy. My love for my existing girl was so fierce.

I needn’t have worried about the gender. Following an event-free pregnancy, Audrey arrived. In distress, cord around her neck, blue – it was all over in a terrible hurry and a terrifying birth experience, for both of us. I had no emotional support following this harrowing event. Their father tried but he was tired from work and drink and, being almost twenty years older than I, of a less emotionally-mature generation of men. However, she was an easy baby, thankfully. She slept when I put her down. Weaned early and easily and smiled a lot. I filed ‘dealing with difficult birth’ as emotionally pending.

Being a parent to two children under two was difficult; as they grew they became ever more competitive. My relationship with their father became increasingly difficult as he drank and I tried to keep up with him. I ended it around Naomi’s sixth birthday.

It did not take me long to meet another man. It’s never taken me long. I took almost fifty years to meet myself though.

I had two daughters at school and a job in mental health that I loved and was good at. When I fell pregnant the third time, I talked myself into an abortion. I was not putting myself through all that again. He, however, had other ideas. He had two girls from a previous marriage, daughters with whom he felt he hadn’t been able to spend enough time. He begged me to keep the child. He promised me I could go back to work, that he would take the child if anything happened between us, that I would never be assumed to be wholly responsible.

It was another difficult pregnancy, with more than one hospital admission – all day all night every day every night sickness with malnutrition and dehydration. The obstetrician explained that my body was really good at growing and feeding a baby – to the extent that it neglected my own body’s needs. This time, I had no particular wish for either gender. I think I disassociated very early on, telling myself I was having this baby ‘for him’.

A third girl child! I refused to feed Petunia when she was born. I did not want to connect, knowing what a wrench returning to work would be. I asked the midwives to take her to the nursery overnight so I could sleep. I tried so hard to not connect.

Returning home was fraught. Between my husband and I, this girl had four big sisters! My hormones had kicked in, I was programmed to protect her but I felt like I was giving her away. I shut myself in my room and I cried. He took her out. I cried. Her sisters cooed over her. I cried. When she was six weeks old, I returned to work. I cried. I was on night shifts when Nynex began drilling outside our home during the day. I couldn’t sleep. I cried. Shortly after, our landlady died and her daughter sent people to value the house and do it up for sale. Not for us, just for their profit. I cried. By the time Petunia was little more than two years old, I was crying just before 11 am every single day. Wherever I was, whatever I was doing, I would just stop and cry. I wore sunglasses all the time! Small surprise then that I had a complete breakdown. At the risk of writing a cliche, the breakdown turned out to be a breakthrough. I rediscovered my creativity and vowed to be true to myself – no more compromise – they might not learn how to be a great mum from me but my daughters would learn about freedom.

Lots happened – I enrolled on a music course, I worked two jobs, I formed a band. He  stayed home, cooking, washing and getting stoned. (I did the last bit with him, ever the codependent!) Inevitably, wanting different things and never having really understood each other in the first place, we separated. He was true to his word. He took her and raised her. I moved away. Contact was sporadic. It took me a long time to realise the effect of intoxicants on mine and my children’s happiness. I’m clean and sober now and… better. I know that it could be too little too late but it is what it is.

My daughters are all adults now. They are incredible young women, in spite of their parents. They are making their own choices – having babies, travelling, drinking, writing, studying, staying sober, getting stoned, singing, dancing, playing guitars, making things, walking in the woods, picking mushrooms and throwing them away.

I’m told it isn’t nice to let your child know they weren’t planned, maybe not even wanted but I don’t think it’s nice to pretend. What a precedent that sets.

There is so much more I could write and maybe one day I will. For now, as my youngest – the beautiful and fragile Petunia flower, turns the Discordant and magical age of twenty-three – I want to declare that I love my daughters with the same burning fierceness I experienced at their births. I want them to be safe like I did when I sobbed and howled as the family took the newly born Petunia out for a walk. No more denial, no more running away – only love. I want to connect.

I hope you’ve learned and are still learning about freedom.

 

 

7 steps to saving 75% of your disposable income.

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7 steps to saving 75% of your disposable income whilst making a green-anti consumerist choice and helping out someone who needs it.

  1. Go to town to spend some money because you have money and you ‘deserve’ something new.
  2. Find a busker whose music makes you feel good.
  3. Wander in and out of nearby shops, casually browsing but continue to listen.
  4. Decide how much you want to spend on a new pair of shoes/dress/thing you don’t really need.
  5. Give a quarter of that to the busker.
  6. Hang around and have a proper listen until you’re ready to leave.
  7. Go home 75% better off than you would have been with that slightly smug altruistic glow that is, I’m afraid, unavoidable if you’re a bit middle class.

 

Deadbeat or in tune?

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I’ve just been reading a Facebook thread about ‘deadbeat mums and dads’. It’s hard bringing up children as a single parent with little or no financial support but it is equally so easy to judge other people’s decisions.

Try replacing the word ‘deadbeat’ with ‘damaged’, ‘struggling’, ‘unwell’ and many other problems that a person could have that could result in them being either physically and/or financially absent from their children’s lives.

My father was absent from my life from when I was about 2-3 to when I was 35. My mother did a brilliant job, not without its fraught times but who’s to say that would have been better with my dad around?
I left my own children and went to live in France to get to know my dad. It was hard for all of them and I was very harshly judged by, in particular, my ex-husband and his family who had to pick up the delightful slack of raising our daughter but also by many of my ‘friends’.

With hindsight, what I see is that on finding my dad a huge part of me reverted to being a needy child. So I left everyone and went to get to know him and to grow up. Both of these tasks are now well underway thanks to that literal and emotional journey. While I was away I lived on busking and playing the odd party. I briefly ran a business too and, when I could, I paid for my daughter’s flights to spend holidays with me and bought her new clothes while she was with me but it wasn’t much. I never sent any money to my ex. Wait – I think I did once, maybe twice but whatever – I barely financially contributed.

Our child missed me, she’s shared her diaries with me since. I made her very sad with the constant goodbyes and airports and such. What she can’t know is how much sadder she would have been dragging me out of pubs, or beds or wherever I certainly would have ended up had I stayed. And that is as it should be. Some of our parenting, present or not, will ‘screw up’ our children or – present them with opportunities for growth.

Only I can know what was really going on for me then. What I do know is that, as a result of this process, I have been afforded the possibility of learning who I am in order to become a better, healed person, one who no longer drinks to excess, doesn’t smoke or take drugs nor seeks validation from a string of unsuitable lovers and no longer needs to bitch about my family, my ex, my lot in life, my past etc etc.

How selfish is this to abandon one’s family and to choose to live with barely enough to support oneself, let alone those who are supporting one’s children? I can’t judge these things. Partly because, if I do, then I have to get upset about my own father’s absence and if I do that then I can’t get on with having a functioning relationship with him right now; partly because I don’t want to judge anyone else’s personal decisions as I’m not in their head and heart; but mainly because I have a fantastic relationship with my three wonderful daughters who are growing into evermore wonderful women daily and I believe I have shown them that sometimes we just have to go our own way. If I hadn’t, I’d still be in Worthing – depressed, drunk and barely functioning. A fine example to my children.
So, judge away, if it helps. I am almost impervious. (Not quite or I wouldn’t have needed to write this.)
But do remember that each time you feel smug about a sacrifice you made or a thing you didn’t do, you may have been denying your soul a chance to grow; you may have been hiding behind your current life through fear of building a new one – at least that is what I did. Until I didn’t anymore. And each time you get angry about what someone else is or isn’t doing they are living rent free in your head and you are expending energy you could most likely put to much better use. Is it helpful to your child to grow up with a bitter, judgemental and angry parent? It may even drive them from you and into romanticising about the absent parent.

Most importantly, and this is a note to self as much as anything, remember those judgements can only be based on you, your own experiences and how you tick, you will never be anyone else so it’s a flawed process.

Of course I love my children and I know that I love them so much better having allowed myself to build better relationships with my own parents, and above all, love myself.
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Read more of my story on how I found my father here
And the birth of a project here
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The Beautiful Beast

Totally-Boaring

Thirteen years ago I moved to a caravan in the south of France. I cooked on an open fire when the season permitted (fires are banned in Spring and Summer for obvious reasons). I washed in the lake. I walked a mile or so up and down hills to fetch drinking water from the village fountain. I hitched to market to busk and then buy food. I trusted.

One night I heard a terrible, terrifying growling outside the caravan. All my senses came to the front as my thinking brain switched off. I listened, I watched in the darkness, I remained perfectly still, I felt

Remembering the time I was wild camping in Scotland and heard a mad axeman outside, hell bent on rape and murder, who turned out to be a hedgehog I tried to relax and eventually went back to sleep. That growling though…   I supposed it was a wild boar and hoped it wasn’t a herd-leader or pregnant or with babies as they can be aggressive.

The next night, it happened again. And I needed a wee. Outside. I was so scared that I tiptoed to the edge of my caravan door and tried to wee like a man out the door, hoping that the scent would deter rather than inflame whatever wild beast was growling in the woods.

This continued for several nights, I had to go outside to squat further from the caravan as my doorway was in danger of becoming a very smelly place and I did like to receive the odd guest occasionally. Whilst outside I heard it again, louder and ever more menacing from behind the nearest bush and worse still – I could feel its eyes on me.

I started to feel it was watching me during the day too. My woodland sanctuary became a Halloween Hollow – I lived in a state of permanent fight or flight arousal. It was exhausting.

A week later, I hitched into town to busk the market and made a lot of money for a few hours’ work. I decided to treat myself to fresh fish. I did my shopping and got a lift home. I felt those eyes again as I cooked my fish over my fire and then – it happened. The beast burst out of the bushes and yelled at me midway between bush and fire. It screamed its deathly menacing “mew, mew” as its beautiful golden eyes pleaded for food. It was a tiny black cat with matted fur and half a tail.

I got to know her over the coming weeks, tempting her closer with fish heads and bones and ham. It took a while as I only had meat and fish on the weekend, having no fridge. And she was very shy. She could hunt though, even with only half a tail. I watched her take off after the song birds – it was incredible and no sign of cruelty, simply hunger, the hunt and a need met.

She let me stroke her after a month or so. She was very muscly and strong and… pregnant!

I called her Mabel as a nod to the French Ma Belle- My Beauty. She was, a Beauty and a Beast.

Shortly after that I heard the mewling of a litter. I never found them and it seems that only one survived – she brought him to visit when she felt he was old enough.

I don’t need to write clichés about appearances and prejudging, facing fear, what is real and all that – you’ve understood the story and can write your own morals and life lessons.

And the reason I’m only telling it now, thirteen years later? I left France a while ago now but was visiting a couple of weeks ago. As I walked from my father’s cabin (latterly constructed up the hill from my former home) to his outside dry toilet I heard a cat. It was Mabel. She came to say hi. She purred and fussed around my hand. I never went to the toilet without my phone/camera again. She never came back.

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read my story here

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and my inspiration here

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Smooth(ie) Talking

Day 3 of #7daysofIBD – What can I eat?

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There’s no cure for IBD but a careful, if expensive diet, can sometimes help to manage some of the symptoms and provide an energy boost. These ingredients became today’s breakfast juice.

Six years ago, when I was in and out of hospital, I asked my Gastroenterologist how I could change my diet to make me well. He said categorically that there is no link between this digestive disease and diet. Now, patients are being referred to dieticians and nutritionists and it is widely accepted that all forms of inflammatory and auto-immune disease can be, at least, managed a little better with clean eating and constant dietary detective work.

So, if I avoid all processed foods, most grains, most dairy, sucrose, green vegetables, legumes, pulses, raw food such as salads etc., onions, apples, garlic and more then I can limit but not eliminate my symptoms. Add coconut oil, a little raw Manuka honey and some other anti inflammatory ingredients and I’m almost well. Sort of.
Oh – what can I eat? Meat, fish, root vegetables, the green part of leeks and spring onions, citrus fruit, bananas, bananas, bananas. I can’t bring myself to eat factory-farmed meat though so that’s quite expensive too but I have to get my protein from somewhere! And bananas.

As the NHS does not officially agree with this I can’t get a £30-£50 jar of honey or cold-pressed organic virgin coconut oil on prescription.

Not that I expect everything for free just because I’m sick but here is the cycle in which many of us find ourselves:

  • Work/run around after children/have a “normal life” eating out occasionally, grabbing a sandwich in town because you’re really hungry and you forgot/were too tired to prepare some slow clean food and now you’re out/absorbed in work and it’s way past lunch time.
  • Get sick
  • Lose job through too much hospital time/surgery etc.
  • Go bonkers on clean low inflammatory smoothies (see my breakfast in the picture above) and clean eating.
  • Run out of money because you’re now on benefits
  • Eat apples and bread or what ever is available because it’s cheap
  • Stay sick
  • Get money for Christmas from family/small lottery win/tax rebate from when you were working.
  • Top up on  £30-£50 jars of honey, cold-pressed organic virgin coconut oil, hemp oil, organic turmeric etc.
  • Get better or at least well enough to…
  • …get a job
  • Return to the top of this list and repeat until retirement age.

Does anyone want to see my CV? It’s really good. I’m genuinely currently seeking employment. Will work in part for  £30-£50 jars of honey and cold-pressed organic virgin coconut oil.

 

 

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My story here

Birth of a project here

 

 

Gutless – well, almost.

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This week is international Crohn’s and Colitis (IBD) awareness week. I’ll attempt to write something each day to participate in raising awareness. I’ll start by explaining what I know about IBD.

IBD is Inflammatory Bowel Disease. It is an auto immune disease. There is no cure. It is not IBS, which is horrid but not a killer. I know, I nearly died from Ulcerative Colitis (UC), once from the disease and then again from complications following surgery.
I’ve had my large intestine removed. It was full of holes and I was being slowly poisoned so there was no other option. I now have an internal pouch, called a J-pouch. This cannot be seen. So few people have one that many health care professionals know little to nothing about them. I’ve had all the nurses on a ward come to my bedside after handover to ask me to explain, a radiographer look on his screen and ask me what he’s looking at, doctors asking me about my stoma (I don’t have one) etc. A fellow J-poucher even had a doctor ask her to show him her pouch. Remember, it’s on the inside!
So, when I become symptomatic I am very resistant to seeking help as I have little faith in the majority of such professionals. There’s a specialist J-pouch nurse at my local hospital, thankfully but it’s not her only role so she is very busy and I must be sure not to be in a lot of pain at the weekend or at night as she’s only available Monday to Thursday during office hours. That said, she is knowledgeable and caring so I’m already luckier than many elsewhere in the country.

Whether I have the internal pouch or a colostomy bag I am still not cured. There is no cure. Furthermore, since my colon was removed, my eyes, thyroid and joints have been attacked by inflammation. This is not uncommon. Other IBD-related symptoms are skin problems, mouth ulcers, fatigue, depression and more.

GI consultants like to prescribe steroids in the first, second, third and many subsequent instances. They didn’t work for me but the side effects sure did. They made me fat and more irritable than any bowel ever was. Yuk.

I find I can limit the damage caused by inflammation, with diet but other than the obvious culprits such as sugar and wheat etc. the triggers seem to change on a regular basis so I’ve had to become something of a dietary detective.

Now I have a pouch I get Pouchitis instead of Colitis. What I currently have is considered low grade and, whilst I’m nowhere near as unwell as I was when I had UC, I’ve had it for a year on and off and it’s cost me a job that I loved, my musical career, social life and much precious family time.
So, I’m almost gutless but I’m told I’ve got guts. Sometimes I’m so tired I’m witless too.  Perhaps I should call this Gutless & Witless, but not in Seattle!

That’s enough information for today. I hope your awareness is a little raised.

In conclusion, when you have chronic bowel disease you:
  • really know who your friends are
  • have to learn to take each day at a time
  • become very aware of spoon theory (Google it)
  • want to go to all the events you’re invited to but
  • often end up in PJs and slippers by 5pm (if you even got dressed in the first place)
  • know that pain is a part of life
  • worry a lot about being believed (sometimes I try to do more than I can because even I think I might be faking it, I’m not.)
  • need a beautiful bathroom with strong wifi signal, constant hot water and lots of books
  • don’t look sick
  • don’t look sick
  • don’t look sick

Also, you don’t look sick.

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My story here

Birth of a project here

“She leaped out of her mobility scooter and ran into the shop, there should be controls or something…”

It was almost certainly me who you saw in the little Sussex seaside town. I did indeed leap out of my mobility scooter, sort of run into the shop and rush out again with a bag of shopping.

The title refers to a complaint I read recently in a community Facebook page. I didn’t address it then. I still get embarrassed about my bowel incontinence. Who wouldn’t? Inspired by Sam Cleasby’s (www.sobadass.me) blogging to raise awareness of IBD and her hashtag #stoppoobeingtaboo I am responding now.

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It probably was me who you saw. I leaped out of my mobility scooter, sort of ran into the shop and came rushing out again laden with vegetables and health foods.

I have Inflammatory Bowel Disease and am currently highly symptomatic. After reading your post I stayed in bed for a week, believing I don’t deserve a life and that it’s just too risky to get up.

When I am flaring, in addition to the fatigue, joint pain, acute stomach pain, eye pain and needing the loo every hour, I have bowel incontinence. At the beginning and end of a flare I can just about control this if I remain seated. So I thought I’d sit, on my mobility scooter, ride it to town and buy some essentials. I had to rush into the shop, despite pain and fatigue, or I may have had an accident.

I had to think hard about whether I was well enough to go out. I have to push myself sometimes to see how I am. Sometimes, by making the extra effort, I realise I’m going into remission. Lately I’m more likely to realise I wasn’t really quite well enough to go out. But I have to try.
I have auto immune diseases; my body is fighting itself, I am full of my own judgements over whether I should just hide or not, whether I can honestly go back to a job which my health will continue to sabotage or whether I can justify (and afford to live on) state benefits.

I look fine. And I’m proud so I present as fine. It’s hard for me to even admit to the medical profession how bad things are so I’m certainly not going to go out looking like a victim. I’m already so embarrassed by the scooter that I barely use it. So, when I’m not housebound by incontinence and pain, I’m housebound by shame.

Judgement has not been helpful. I would ask everyone, from the disabled toilet queue, to the blue badge parking spaces, from the priority seats on the train to, well, just everywhere to stop this negative judging. I’m a positive person generally but sometimes, other peoples’ projections can make it difficult to maintain that outlook.

We are hard enough on ourselves, let’s work on that and not assume that everyone else is somehow on the make.

Do you really think I want to be in a mobility scooter? 

Read a more positive post here

And my personal tale here

Expectations – a birthday blog

Organic chocolate orange cake - wheat, dairy and sugar free with fresh raspberries and blueberries. Mmmmm. And it was heart-shaped. Aw.

Organic chocolate orange cake – wheat, dairy and sugar free with fresh raspberries and blueberries. Mmmmm. And it was heart-shaped. Aw.

Yesterday was my 48th birthday and I was spiky and sad.

I claimed to have no expectations and no desire for celebration. So why was I so spiky and sad?

I suppose it is impossible to have zero expectations after years of being a child, with parents and grandparents trying so hard to make it lovely for you despite their own stresses – personal, financial or other, the expectations have grown from sixteen years plus of treats and parties. As an adult I’ve developed a pragmatic “it’s just another day” approach, or so I tell myself but really I think I want someone to whisk me off my feet and shower me with lovely stuff. Except I’m fairly sure that I don’t. My health is not up to my being “whisked”, I hate surprises and I don’t really want more “stuff”. My diet is so restricted I’m unlikely to be able to eat any offerings of cake, chocolate or accept a lunch invitation.

My Mum took me to the opera. My daughters and grandchildren showered me with affection, lovingly homemade offerings, cake I can eat and pampery gifts. Even my Dad remembered and sent me a Skype voucher.

The day was rounded off by attending the gospel choir I belong to and having them sing a simultaneously rousing and moving chorus of “Happy Birthday (to ya)” in several part harmony.

So why was I so spiky and sad?

Birthdays are a time for reflection. I have a good life, full of love, but a birthday reminds me of what I’ve lost – my childhood, my grandparents, my health – not much different to any other relatively privileged working class “baby buster Generation X” woman but enough to make me sad (and spiky).

As I write from my big red bed, I am aware that, despite being currently highly symptomatic – which means I am in pain, fatigued and unable to stand or walk for longer than 10 minutes without needing the toilet, despite all that I am safe, warm and dry, loved. It’s ok.

So why am I so spiky and sad?

Loads of reasons and it doesn’t matter. It’s ok. These emotions remind me I’m not dead. So if you see me crying, don’t ask me what’s wrong. There’s no story. Well, there’s always a story, isn’t there? But I don’t need to tell it anymore. If you see me crying, smile and acknowledge me. If you see me crying, cry with me. Let’s be real with each other; shake off the programming and get a bit visceral (just a bit, I’m still British!).

I’m spiky and sad and blessed and joyful and tearful and another year older and it’s all fine.

I’m alive. I am loved. And I have a big red bed.

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Here’s what’s physically wrong.

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Here’s how I’m dealing with it.

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And here’s a true and happy story!

The Gift -a “dream” sent to Tracy Tigger Savage

She is tired.
Tired and tired.
So tired that she barely has what it takes to tell the bedtime tale.
Almost too tired to sing softly slumbersome songs to her child until sleep settles.
Almost.

Obligations wearily and lovingly tended to
She slumps
Heavy in her comfy chair.
The television is on.
Something about slavery and justice and freedom and family.

She is tired.

She hears her doorbell sound.
Despite her tired and heavy self she rises to answer.
There is no one.
A sweeping scan of the pavements below
Reveals streams and streams of semi-stagnant water.

The entire Battersea council estate has been teleported,
Transported and transplanted into a watery Venetian landscape.
She takes this in and realises there is no one.

Silence.
A strange stillness.
And there is no one.
No.
One.

And there they are.
They stand so tall, maybe seven feet.
So tall and slender.
So very slender.
More slender and bearing more grace than a catwalk model
Or a Masai warrior.

There are eleven of them, maybe twelve or thirteen.
They shine so slenderly that they become difficult to see.
They are cloaked, enrobed in shimmering fabrics of colours and hues
Never before revealed to humanity.

Later, she will say they were dressed in colours that don’t exist.

They reach her mind.
Remaining in complete stillness their message is projected directly to her heart.

Later, she will say that these were their words:
“We sounded our presence in many dwellings.
Only you answer.
We offer a gift from our myriad of medicine.”

She considers this.
She knows that now is the time to ask for world peace or an end to famine or maybe personal wealth, health and happiness.
“I would rather like a hug.”
She hears herself say.

“We are sorry, little thing, we cannot cross the water and, if we could, it would bring the end should we touch.
We offer, instead, this – our music, medicine song.”

For the first time they moved.
Even then, only their mouths.
One at a time they sang out a note – pure and true.
Each of the Elders held their beautiful, humble, proud, strong, trembling one note and all notes, building layers of sound; a bridge of music built of impossible harmonies that no one has ever heard.

Later, she will say that they sang in harmonies that do not exist.

These harmonies resonate through every atom of her, float upon her every breath and whisper through her DNA to her soul.

She listens to these most incredibly beautiful, humble, proud, strong, trembling, terrifying on note that is all notes that she has never heard.
She listens to the sound of the bridge-building to her soul by which pure love will flow. She sees the shimmering fabric of colours and hues that no one has ever seen.

She hears the song of the Old ones, the New ones, the Dear ones.
She hears the harmonies of intervals created from numbers we have not discovered.
She hears with atoms and DNA.
She hears with heart and soul. She says

“Thank you”.

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More of my story here

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Ode to Any Man (and all women)

“Woman is angry and you are unhappy…”

Click on the orange button to listen…

Brother, father, lover, friend, neighbour, stranger, husband
Man
I offer you my hand
I offer a glimpse of what this woman knows

Man
Give me your hand,
so I may sense your knowing
And together let’s close this divide.

Man
Take my hand and do not mistake humility for submissiveness
As I will not mistake strength for aggression

Oh Man
You have been twisted out of shape and used as a weapon.
Woman is angry and you are unhappy.

Can we just stop?
I’m tired of my sisters’ anger
Is one angry with a rock thrown through a glass window?

And actually, I’m a little bored by your misery, Man
You’re not a rock, stop allowing society to throw you at greenhouses.

As we collectively stir and re-member I wonder …

Heal the land?
Heal ourselves.
Let’s first heal Man.
And our relationships

Let’s teach nurturing to our sons
And strength to our daughters

Passionate poetesses perform their domestic pieces,
furiously sharing their struggles, their grief, their rape.

And it’s all part of their healing.

Man?
How do you heal?

My prayerful prose is for peace between us…

It starts here.
I’m bringing the all we that we lovingly shared in the forest
To my heart
And to my hearth

Man – Will you help me carry peace to the town and beyond?

It’s heavier than it looks so we’ll have to lay down our stories of violence, rape and more.
We’ll have to lay down our rage and our blame.
Brother, father, lover, friend, neighbour, stranger, husband
Man
We have to look into each other’s eyes and know we are the same.

Here is my hand, look into my eyes Here is a glimpse of what this woman knows
Let’s just bear our burdens together and let’s just go home.

Read some of my story here

Mother

20th June 1985

I was at the Stonehenge police check, then the alternative site, talking to travellers who’s homes had been impounded by the police, I was crying with earache in a pool of water INSIDE my tent while Hawkwind played loudly just outside (we didn’t pitch next to the main stage, we were as far as we could be until they MOVED the main stage due to the weather), I was stubbornly drinking and smoking and speeding despite a raging ENT infection. When I returned home I saw myself topless and totalled, staggering around near the main fire, on the national news. I hoped my grandmother hadn’t seen it and recognised me.

I was dangerously hitching rides along the road to the city of Self-Destruction.

October 27th 1985- my 18th birthday

I was on a self-inflicted estrangement from my mother, still spiralling; a kind older woman practically bullied me out of the pub (where I could barely stand) and took me to hers for food. I escaped later for more vodka and speed.

A few weeks later I was back in hospital with ANOTHER severe kidney infection.

A nurse came and told me I was pregnant.

I was terrified.

But I had to keep the unborn child because, apparently, my soul is a Catholic!

I was sick. For 8 months, I was sick. We tried arrowroot, water, plain toast – but I was sick. If I walked past a fish’n’chip shop, kebab shop, take away of any sort – I was sick. I lived in Hove, full of such establishments, so I was sick often! It was wretched – I was weak with dehydration and malnutrition, I loved the unborn child with a terrifying passion, a strange drug and alcohol free passion, so alien to me that I began to wonder who I was.

I spent the entire pregnancy riddled with guilt about the amount I had drunk on my 18th birthday and some of the other things I had done before I knew I was pregnant. I completely cleaned myself up of alcohol, drugs and bad foods. I loved that baby, even if I didn’t yet love myself.

I wanted a boy. Called Barnaby or Solomon. I would never shorten his name. If it was a girl I was afraid I wouldn’t be able to love it. I sang to my unborn child, I played him Mozart and I spoke in German to him often. I tried to encourage “Dad” to talk to him too, but he is a painfully shy person who needs alcohol still today before he can communicate with others. He was even shy of his unborn child but I nagged long and hard so Barnaby/Solomon would be used to both our voices. This one of the very few of the epic Qin/Tigger battles that I won!

The unborn child was a dancer. It was the only time in my life I have enjoyed loud gigs. We’d spend many an evening at the Prince Albert or the Hungry Years, me clutching an orange juice and Barnaby/Solomon bopping around, rhythmically inside me.

June 28th 1986

Our perfect daughter arrived with minimal fuss at Royal Sussex County Hospital. I honestly can’t remember the time or much! I do remember all fears about loving a boy/not loving a girl flooded out with my waters and I just loved her. It’s a terrifying love – I have to keep “this” safe for ever. And “this” is an actual person. I’m crying as I type – it didn’t come easy –  all that love, it was so overwhelming I would try to deny it in the coming months but (almost) always held her closer as she cried (loudly and often), crying myself sometimes, doubting my capacity for the life changing task of even getting her to her first birthday.

I say “perfect” – I knew so little about babies that, when she was born with a full head of dark hair, I thought there was something wrong with her – after all, babies are bald aren’t they?

Obviously Barnaby and Solomon were no longer suitable names. “Naomi”, I whispered to her as she learned to feed for the very first time. Her father walked into the birthing room.

“Naomi?” I said to him, questioningly.

“Too Jewish”, he replied.

“OK then, how about Rebecca?”

He agreed to that. And I always felt that in that naming, I honoured my Solomon!

As she grew, so did I. She is wise, clever, beautiful, strong and still a great dancer. The last fight we had during her teenage years ended with the giggles as she demonstrated her strength and wisdom to me.

Today, as I type, we are preparing to celebrate her 29th birthday. I did it! I got her safely to her first, and second and so on. She has taught me to embrace the “alien” love and it now flows easily for all three of my daughters and for my grandchildren too.

I also learned to accept my own mother’s way of loving.

Tig'n'Becca 1987

Happy birthday Rebecca – I bet you’re glad you weren’t a Barnaby/Solomon!

Read more about my story here

When you’re having a bad day…

“But I am very poorly today and very stupid and hate everybody and everything”
Charles Darwin

So Bad Ass

You know those days where everything seems like hard work? When life is getting you down and everything is against you?

I’m sure you do because we all have those days. The ones where you need to crawl into a duvet cocoon and hide from the world, eat a whole tub of Ben and Jerrys and watch weepy films.

When you have a chronic illness these days can occur more often and it can be really hard not to let it all get on top of you and for it to be just too much.

I’ve had a few days like that recently. I’m still recovering from the jpouch surgery, though it was over a year ago, I was told it’s a 2 year recovery period and I’m still learning about my new body. I get days when it’s perfect! And then days where I am on the loo A…

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Kidnapped by society – do you have Stockholm syndrome?

Society is sick.

Many of us are sick.

I believe my disease (dis-ease) is a reaction to this sickness. Society represents my parents, my tribe, my teacher. We went too far, too fast and now my subconscious mind and my physical body are paying the price.

If I know this then why am I not bailing out, going off grid and “getting back to the garden”?

Well, I think I have Stockholm syndrome.

My society wants to look after me, educate me and keep me safe. I want to be a part of something I have grown up in, I want to feel I have credibility, I want to command respect from wage-slaves in suits despite the evident cognitive dissonance of knowing that our food, water and air are all poisoned in the name of progress and profit by those responsible for creating and maintaining this failing system. For the longest time I had negative feelings about God/divinity for allowing all this to happen. Even now I neglect meditation and contact with my divine self despite being (because I am?) chronically ill.

We are animals still, children of nature.

  • How can we be healthy continuing to live in brick houses with electricity, microwaves, mobile phone networks and wifi running through them?
  • How can we be healthy pumping all manner of toxins into the air we breathe and wasting and poisoning our precious, life-giving waters?
  • How can we be healthy eating processed foods, or meat intensively reared and treated crops?

My body knows I need to get off this runaway train. It can’t attack society so it attacks itself. How many of us present with these signs of abuse?

I feel stuck in these questions. I know the answer is to bail but because I’m sick I’m afraid to let go of my bed, my bath, my flushing toilet, my fridge, my internet connection – the things I am conditioned to love yet I am (almost) convinced that I would recover if I did let go. We can’t go backwards and we can’t ALL go off grid but we surely have to better manage our resources, our environment and our lifestyles.

I have no answers today – I have eliminated “bad” food from my diet (with the odd lapse) but am unwilling to let go of the wifi, the walls and hot water for washing!

In reality, we still hold all the cards. Sadly, if I know this and I’m unwilling to change my life in order to be well I guess I’m a huge part of the problem along with most of you.

What do you think? Do you have Stockholm syndrome? Can we change and get out of this battlefield hospital and into a beautiful convalescent space? Do you agree that we are all abused children, where Nature/Earth is our true mother and Society our kidnapper?

“Stockholm syndrome is considered a complex reaction to a frightening situation, and experts do not agree completely on all of its characteristic features or on the factors that make some people more susceptible than others to developing it. One reason for the disagreement is that it would be unethical to test theories about the syndrome by experimenting on human beings. The data for understanding the syndrome are derived from actual hostage situations since 1973 that differ considerably from one another in terms of location, number of people involved, and time frame. Another source of disagreement concerns the extent to which the syndrome can be used to explain other historical phenomena or more commonplace types of abusive relationships. Many researchers believe that Stockholm syndrome helps to explain certain behaviors of survivors of World War II concentration camps; members of religious cults; battered wives; incest survivors; and physically or emotionally abused children as well as persons taken hostage by criminals or terrorists. Most experts, however, agree that Stockholm syndrome has three central characteristics: The hostages have negative feelings about the police or other authorities. The hostages have positive feelings toward their captor(s). The captors develop positive feelings toward the hostages.” From: http://medical-dictionary.thefreedictionary.com/Stockholm+syndrome  

“Stockholm syndrome is considered a complex reaction to a frightening situation, and experts do not agree completely on all of its characteristic features or on the factors that make some people more susceptible than others to developing it. One reason for the disagreement is that it would be unethical to test theories about the syndrome by experimenting on human beings. The data for understanding the syndrome are derived from actual hostage situations since 1973 that differ considerably from one another in terms of location, number of people involved, and time frame. Another source of disagreement concerns the extent to which the syndrome can be used to explain other historical phenomena or more commonplace types of abusive relationships. Many researchers believe that Stockholm syndrome helps to explain certain behaviors of survivors of World War II concentration camps; members of religious cults; battered wives; incest survivors; and physically or emotionally abused children as well as persons taken hostage by criminals or terrorists.
Most experts, however, agree that Stockholm syndrome has three central characteristics:
The hostages have negative feelings about the police or other authorities.
The hostages have positive feelings toward their captor(s).
The captors develop positive feelings toward the hostages.”
From: http://medical-dictionary.thefreedictionary.com/Stockholm+syndrome

Afterthought – If you were born into generations of slavery by stealth and kept in reasonable to good conditions would you even know you were a slave?

 

Finding my father

Project Route 50 UK – raising awareness of chronic health conditions – how it began

 

 

 

 

 

 

 

Open letter to P.I.P. assessors

Dear PIP Assessor,

When you visited my home I answered the door to you myself because there was no one else. Had I not been expecting you, I would not have got up and walked very painfully, albeit without apparent struggle, to let you in.

You spotted the piano as you came into my sitting room and commented on it; I told you I hadn’t touched it since coming out of remission as I have brain fog and no motivation. I wish I had encouraged you to run your hand over the dusty keys, then you might not have used my owning a piano as evidence of my rich inner life (am I supposed to sell all implements of pleasure now I’m sick?). You also mentioned the books. I told you they were kept out of sentimentality as I have not been able to concentrate on a book since my last operation five years ago. Again, you went away and wrote that I am clearly mentally well as there is evidence that I read. I have a bicycle, cross trainer and a boyfriend too. I am physically unable to take advantage of any of them so it’s a good job you didn’t spot them all lurking in the shed.

I have always been brilliant at passing tests so counting back from 100 in sevens was easy-peasy. According to your system this is a much better test for cognitive problems and brain fog than the fact that I took two Tramadol four hourly the other day instead of Loperamide, persistently forget my thyroid meds, often forget conversations almost as soon as I’ve had them and cannot remember what I’ve read as soon as I have finished reading a short paragraph.

I told you that I cannot stand for long enough to prepare and cook a meal. On my frequent bad days I can’t even stand to stir food in a saucepan. Were you trained to persist, terrier-like, at the idea of me preparing baked beans on toast being some kind of life saver? I told you three times I cannot lift the grill for toast, cannot stand to stir the beans and most importantly, even if I could my compromised digestive system cannot cope with bread or legumes. Eventually I sort of acquiesced as you had worn me down and I think I said “if you say so”. I call that bullying.

You witnessed me bending, moving and even rushing to the toilet. This was all evidence, in your eyes, that I do not need extra help. The bending, twisting and other movement was to try to deal with pain – I hadn’t taken any Tramadol as I wanted to be clear-headed for our interview. The rushing was because I wasn’t willing to have an accident in front of you. Perhaps I should have pooped in the sitting room before your very eyes as proof of my need.

When I told you I could, if I absolutely had to, walk a little but I might need a nappy and would need a sit down every ten minutes I did not expect you to suggest that I carry out my life in this way. Do I carry a chair with me everywhere when I struggle to carry my handbag, which only contains keys, phone and an empty purse? Is it right and dignified to expect me to wear bowel incontinence aids when I am sobbing and trembling at the very thought?

I told you that I only really feel safe at home. My GP says I have PTSD in addition to all the physical conditions listed on my application. This, I was not even questioned on. In your decision it states I showed no signs of anxiety. I was at home. Where I feel safe. Duh.

After you left I sat in the toilet for an hour and bled from my bottom, in agony and cried. I then physically crawled to my bed. It was two in the afternoon, I stayed there until the following day and slept for most of it. You hadn’t even asked about the fatigue.

In conclusion, I am very grateful that I have friends and family around me who can help with shopping, cleaning, dog-walking, getting me to hospital appointments and my sometimes expensive dietary requirements . Your and your employer’s lack of understanding and support has at least highlighted that. I am very concerned about those who are or who feel more isolated by their chronic disease.

Yours very sincerely

a chronically diseased patient

PS My boyfriend wasn’t really hiding in the shed.

Programmed to put on a brave face - perhaps not always the best approach?

Programmed to put on a brave face – perhaps not always the best approach?

I have, according to my doctor, a complex auto immune disease incorporating Hashimoto’s hypothyroidism, Ulcerative Colitis, bouts of Ileitis, Iritis/Uveitis and probably arthritis (tests ongoing). My immune system  is currently attacking my guts, my eyes and my joints. Where next? I do have bad days, very bad days, good days and better days. It took me over a month to write this piece!

I wish my super-powered immune system would attack THE system.

My story here

Read about Friends and chronic illness

Consent: Not actually that complicated

If a self-invented Rockstar Dinosaur Pirate Princess isn’t a star in their own life then I don’t know who is. Also, this piece about consent is spot on. I’m going to make some tea which you may or may not decide to drink as you read it…

rockstar dinosaur pirate princess

http://kaffysmaffy.tumblr.com/post/780535517 http://kaffysmaffy.tumblr.com/post/780535517

A short one today as my life is currently very complicated and conspiring against my preference to spend all of my days working out what to blog. But do you know what isn’t complicated?

Consent.

It’s been much discussed recently; what with college campuses bringing in Affirmative Consent rules, and with the film of the book that managed to make lack of consent look sexy raking it in at the box office. You may not know this, but in the UK we more or less have something similar to ‘affirmative consent’ already. It’s how Ched Evans was convicted while his co-defendant was not – and is along the lines of whether the defendant had a reasonable belief that the alleged victim consented. From the court documents it appears that while the jury felt that it was reasonable to believe that the victim had consented to intercourse with the co-defendant, it…

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Life with chronic illness – what it’s really like

this is sometimes my life, like now for example. And Sam says it so well. Sometimes even shiny stars can blink.

So Bad Ass

“Get well soon!” That’s just one of those every day sayings right? But what if you have an illness that you will never get better from? The worst part about having a chronic illness is that it is a life sentence, unless there is some miracle cure, if you have a chronic illness, it will be with you for forever, there is no getting better soon, no happy ending,  there is no end in sight, there is no cure or end game. And that is why, often it isn’t the physical pain that is the hardest thing to deal with, it’s the emotional pain that goes along with it.  The guilt, the idea that you are a burden to those around you.  It can feel like you are being crushed, that the illness is drowning you and swallowing up the person you are, leaving only this shadow of a person, a…

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Journey Woman

We ARE almost home…

Starring Role in YOUR own Life

River
I have seen death
experienced suffering
I am renewed from within my own ashes like a young plant in a rich compost

And after all, we are strong and adaptable

My trunk is strong
My branches have learned to bend and sway with the wind
There have been hurricanes, pieces of me were blown away
and I screamed my pain and my loss
but I can withstand still more

And so can you.

Did you know, we are a strong and adaptable species?
The most adaptable, this is why we are sad

We journey all the time
even though we sleep through much of it
What if we all woke up
And let the landscapes lead our lessons?

What if we ceased to cling to
photos, locations, artefacts, addictions and patterns from paradigms practically lost?
We need very little, it’s all already here.

Wake up – we’re waiting by the…

View original post 104 more words

Patient

I have many friends in “conscious community”, “spiritual” research and “new-age” life styles. I also have many friends in western health care and academia and even some in scientific research. Your presence – be it physical or virtual or even thoughts across the ether is felt.  Your love and well wishes have a healing capacity all of their own.

Being a patient is strange.

Being in hospital is tough. People telling you how to heal or deal with your situation is, generally, not useful. Many new-agers or “spiritual” types talk about not giving your power away in these kind of situations. My experience is that when you are quite literally near the edge of death and people start to take care of you, you let them. For me, four years ago, I was far too unwell to “defend” my power and, despite signing consent forms etc had no real understanding of what was going on. In hindsight, I would also say that I was in shock.

OPEN LETTER TO FRIENDS, LOVED ONES, WELL WISHERS, DO-GOODERS, PRIESTS, WITCHES, DRUIDS AND VIRTUAL BYSTANDERS

Dear known and yet to meet Friends around the world,

please know this: I am an intelligent, intuitive and educated woman.

Since I was seven I could use a research library. I’ve used computers since 1988 and had the internet since it was readily available for private homes. I can find information from sources I trust. Swamping me with links pertaining to IBD, what else it might be and how Peruvian badger pee heals all life says more about your latest road trip on life’s journey than about what I need (unless you’re actually researching me!). Thanks to social media, workshops, “chance” meetings etc I know what you’re into and can and do ask for more information. You see, I am really not closed to your input. It’s just I trust that I will find what I need when I need it – most of your stuff gets lost in the maelstrom of cats, politics, dinner, rants, events, babies and prat falls that currently whizz past my bedridden consciousness!

I suppose I’m just asking you to stop and think – is that post for me or about you?

In the “spiritual” community it’s worse – what with you sending me connections between specific emotions and parts of the body, platitudes about attitude and advice on how to be “in my power” I feel like you’re saying it’s my  fault I’m diseased. If I had meditated more, got angry with my parents, followed my bliss when I was 20 then now I would be healthy, slim and shiny, doing yoga and 5-rhythms, digging my organic, heritage-seeded garden and harmoniously cohabiting, getting loads of great sex in a consenting, conscious polyamorous relationship. That if I had dealt with my stuff, eaten a better diet and lived more authentically I would be whole.

Asking me to learn new spiritual practices in my current state is a little insensitive. It’s like all those millions going into therapy while they’re in crisis. I think, if you’re going to look at potentially traumatic events or emotions, that it is best done when you’re strong. How can you process when you are in fear, anxiety and mental or physical dis-ease? However well-intended it may be I find that this approach to my being unwell is at best patronising and at worst dangerous. I’m not really upset, I do understand why and where you’re coming from and I promise I will ask for help, advice and information when I need it. Send me stuff, of course, just – like I said – is this about your mission or my condition?

I am eating an organic, Paleo diet, I am informing myself. I am positive with an attitude of gratitude, I am loved and loving, I continue to be the star of my own life. I am also currently unwell.

I am in my power.

scroll down below image for medical explanation
Hospital Admission for IBD

Hospital Admission for IBD

I had Ulcerative Colitis (UC), apparently. I write “had” because my colon was removed in an emergency operation.  I write “apparently” because my body never responded to accepted treatments. Not one of “their” drugs worked. Not even the “magic” new, still-in-trials-please-sign-here, injection. After two years of operations, bungled and successful; after 18 months with a colostomy bag; after further surgery to form the internal ileoanal pouch or “j-pouch” and after three years of being well I am sick again. We can’t call it UC because it’s not in the colon. It’s in the ileum (so it’s ileitis) and in the pouch (that’s pouchitis).  

Finding my father 

Merry Xmas?

Another Star of his own life is Jamie Catto. Here, he writes about how Christmas heaps pressure on children, pressure endorsed by society and condoned and perpetuated by parents. Let’s stop.

Jamie's Blog

Something I feel needs discussion is how we, at Xmas time, build the kids up with a frenzy of expectation; the presents, the things Santa will bring, the orgy of receiving and getting, all so that the adults can get a kick out of seeing the kids so excited, so we can milk their excitement (really for ourselves NOT them) and then, when the big day comes and the inevitable disappointment kicks in (because what experience could ever match that build up?), the kids, one way or another, melt down, behave ‘badly’ or spoilt or disappointed on Xmas day, and then, I feel abusively, having created this sensory ‘sugar-crash’ of materialism, we SHAME the kids for their behaviour and ingratitude! It’s a double abuse we perpetrate on them – first a fake building up of hope for something which is never delivered, and then an unjust shaming when they don’t…

View original post 68 more words

Label Me Lazy

Screen Shot 2014-08-19 at 21.55.38
lazy
ˈleɪzi
adjective
unwilling to work or use energy.

I do not glorify constant doing.
Busy, to me,  can mean
I claim some time to stand and stare
We all need that
When I am not being a human doing

I sit and stare…

I’ve always been this way
bursts of energy invested in activity and problem solving
then staring time.

I have always been this way.

And yet,

Still I must shake off my “lazy” label.

Leisure

What is this life if, full of care,
We have no time to stand and stare?
No time to stand beneath the boughs, `
And stare as long as sheep and cows. `

No time to see, when woods we pass,
Where squirrels hide their nuts in grass.
No time to see, in broad daylight,
Streams full of stars, like skies at night

No time to turn at Beauty’s glance,
And watch her feet, how they can dance
No time to wait till her mouth can
Enrich that smile her eyes began?

A poor life this if, full of care,
We have no time to stand and stare.

W. H. Davies

Read my story here

What Women Want

MVI_9491

What women want?
Are you repeating it like a mantra
Do you think your poetic pondering
Is tantamount to tantra?
What do women want?
I think it might be code
For “hippies chicks are where
I want to shoot my load”
What do women want?
I often hear it said
That there’s a man who knows
And he’ll kindly share his bed…
Well, I am older now, wiser and wider, free-er and fatter
Pretty cool with my karma, as I live in my mind way past all the matter
But I’m hearing from all these men “enlightened”
About what women want  and I am a little frightened.
Not for me you understand
As I’ve had plenty and now I’m a gran
I’m passing under all the bridges and I’m happy in this water
But reading all this “consciousness” makes me fearful for my daughter.
Please be advised, I know that she’s wise
but she’s young and your words,
though they sound quite profound,
often turn out to be empty
So tell me “Conscious Man” do you think that you can
Do right by a girl of twenty?
Or shall we be honest and say that this isn’t really about a journey or growth
It’s about those hot yoga mamas or gullible girls or both
And how you can bag them and shag them and move on
While I witness nothing changing as you get your groove on
“Conscious Man” please don’t write with your erection
“Conscious Man” please stop this endless projection
Look to yourself and trust that my sisters are doing the same
It’s always been a dance and that’s part of the game.
Sex can be holy union born of desire
It can be a base urge it can fuel Kali’s fire
It can be used as weapon to promote the divide
It can be a journey deep inside
It’s a means to an end
As we create ourselves again and again
It is often a matter of scratching an itch
But let’s not prescribe a formula which
Decides “what women want”
you are striving behind
a false premise, and you seem blind
as you seek bump and grind
 For if you really look then you’ll find
 
That the consciousness, drive and desire
of all Womankind
is not 
a
hive mind.
my story here
my charity project inspiration here 

Words from the Chalice Well

Chalice Well

How can we fight to protect our rivers and sacred waters
How can we heal these life-threatening wounds to our Holy Spirit
How can we be in service to the good of all life
How can we bring about this Kingdom of Heaven on Earth
When we ourselves are broken
Fighting – born of such ignorant fury
Healing – a buzzword for the bardic bandwagon
and Serving – faceless masters
An army of such wounded warriors is surely doomed to die
And so, my prayer:
That we learn to heal ourselves so well
That we free ourselves
And in so doing
Our children’s children are freeborn
And they will play in the heaven we have left for them
I accept this, the challenge of healing.
I will be well
As all will be well
When we are well
We will heal the world
Because we are the world
Will you accept this , the challenge of healing
that we may reach such a point of strength and integrity
as to seamlessly uncover the true foundations
onto which our children’s children will co-create
the diamond-sparkling spaces where we were always meant to play;
they themselves so whole – heart and soul and all that is…
Will you hold my hand and leap into that most perilous safety?
And did you know that
We
can
Get there from here?
more of my story here

Journey Woman

River
I have seen death
experienced suffering
I am renewed from within my own ashes like a young plant in a rich compost

 

And after all, we are strong and adaptable

 

My trunk is strong
My branches have learned to bend and sway with the wind
There have been hurricanes, pieces of me were blown away
and I screamed my pain and my loss
but I can withstand still more

 

And so can you.

 

 

Did you know, we are a strong and adaptable species?
The most adaptable, this is why we are sad

 

We journey all the time
even though we sleep through much of it
What if we all woke up
And let the landscapes lead our lessons?

 

What if we ceased to cling to
photos, locations, artefacts, addictions and patterns from paradigms practically lost?
We need very little, it’s all already here.

 

Wake up – we’re waiting by the side of cool, clear water
We’ll never get there by adapting to darkness
Nor by polluting the sky with madness
We were given sun, moon and stars
Will you open those sleepy eyes and gaze with me

 

We’ve come so far and we’re all so tired and it’s easy to sleep
but look at this cool, clear running river
listen to the evening birdsong
wait for the sky to fill with stars
and read them with me

 

Did you know, we are a strong and adaptable species?
The most adaptable, this is why we are sad

 

And we are almost home.

.

.