And Now For Something Completely Different


Two page Spread – a challenge I set myself

You would be forgiven for thinking I’m absolutely wallowing in misery given the nature of my last few posts, but it’s not actually the case. Blogs are always only a tiny slice of a life, aren’t they?!

In fact most of the time I’m happy enough and extremely grateful to be leaving the flat from hell. To be somewhere quiet and free from fragrance is blissful after the last few months. I still have packing to do, the dreaded ESA50 to complete, I’m exhausted but…it’s okay.

I’ve recently started doing some collage again – collage is something I circle back to over and over – not in a big way, usually just in small books: this is my ‘scraps’ book, an Ex Libris Annonymous journal I’ve been collaging in since the beginning of 2013. Maybe it’s about time I finished it!


exploring angles

I’ve signed up for Katie Licht’s Cut & Paste class, hosted by Studio Calico which looks like it will be fun so I’ve also started a new, slightly bigger book for that, too. Even though collage feels very…natural to me, I’ve long admired Katie’s work and promised myself if she ever gave an online class I would take it. It begins tomorrow so it’s not too late to sign up if you’re interested. No,I don’t get anything for this – I just like to support things I like.


the bits left after something has been cut out are my favourite

No collage today though – it’s a glorious day, still and warm and the site is closed so I shall be finding a spot outside to enjoy it.


So Anyway, THIS Happened Yesterday…

A woman walked into my* home and when confronted, she carried on going!

Yes. Really.

I was resting on my bed when I heard the door go. I knew Dave was on the mainland so I assumed it was a visitor as the site is open and occasionally there is one who thinks the barrier is not for them and fails to read the A3 size sign on the door saying Private Residence. It’s one of the downsides of living on a Nature Reserve that this kind of thing happens sometimes.

So I got up to tell whoever it was to get out, opened my bedroom door and was face to face with a woman who has a p/t seasonal post here and who should have known a damn sight better.

I was stunned actually, but manged to say, ‘What are you doing here? This is our private residence, you shouldn’t be here!’

To which she replied – whilst calling me darling over and over again – ‘That it was an emergency, she’d locked herself out of the office and had to show some people around, and that she thought no-one was in!’

And she then continued down the hall and through the connecting door** to the office. Wow. 30 seconds later the adrenaline kicked in and I was furious, I followed her but fortunately for her she had already unlocked the door and gone.

I say fortunately for her because unfortunately for me I inherited my mother’s caustic tongue and, as I was incandescent with fury; I would have let rip regardless of consequences. I can’t tell you how utterly inappropriate it feels to be called darling by someone under those circumstances. It really drives home how rude and inconsiderate their behaviour is.

I phoned Dave, who said he would talk to his (and her) line manager immediately and then her when he returned to the office. I decided to sit that talk out as I really didn’t feel I could trust myself – I’d calmed down enough to realise that shouting at her wouldn’t help in any way, but I was still angry enough to want to give her a lengthy piece of my mind.

She, apparently, was full of apologies by the time Dave returned – no doubt she had realised how utterly out of order her behaviour had been. Added to which she had not even been locked out – she had been told where to find a key, she just failed to listen properly.

So she apologised, but I realised this morning that I needed to talk to her face to face because I need to say that it wasn’t just that she violated mine and Dave’s privacy, it’s that she then demonstrated a total lack of respect for me when I challenged her. Apologies I couldn’t care less about,  I want to hear from her own lips that she understands and that she  will never ever do anything like that again.

And she’d better not call me darling while she does it…!

*I might have moved out, separated from Dave and now moved back in but I’ve lived here for the best part of five years, so it feels like my home.

**Unfortunately because of the layout of this building our flat has to also be a fire escape for the office staff, which is why the connecting door isn’t locked. This has actually been okay, I don’t love it obviously, but apart from one episode a couple of years ago, our privacy has always been respected.

ME/CFIDS CFS Fibromyalgia and Sensory Sensitivities Again

Following my post on my problems with Sensory Sensitivity the other week I did a little bit of research. This was partly because I always have an insatiable need to know WHY with pretty much anything I experience, and partly because I was looking for solutions – or at least help with coping. I spoke briefly to my GP, too. What a waste of time – he didn’t get it at all.

Usually the method of dealing with any kind of sensitivity is to start exposing oneself to controlled amounts of the stimulus until tolerance is built up/re-established, but it turns out that is not at all the case when Sensory Sensitivity is associated with ME/CFIDS, CFS or Fibromyalgia. It also turns out that my perception that continued exposure to noise and smells I could not control had increased my senstitivty to both was absolutely accurate.

The Hyperosmia, Hyperacusis and often Photosensitivity which frequently accompany the above conditions are caused by the autonomic  nervous system -the fight or flight response which has become ‘stuck on’, as it were.

Under normal conditions – i.e the conditions we evolved to cope with, not the conditions we have created – when the fight or flight (or freeze in some cases) response is triggered the threat is a short term thing – our bodies go into a state where everything is on high alert – we quite literally see more, hear more  and smell more in order to be able to quickly assess what and where the threat is and act accordingly. Once we are safe, the parasympathetic nervous system takes over and our systems return to normal.

But not in people with ME/CFIDS CFS or Fibromyalgia. And in fact, for us, repeated exposure to lights, noises and smells increases our stress response, worsens other symptoms and can lead to Phonophobia (fear of sounds) Photophobia (fear of/sensitivity to light) and Osmophobia (fear of smells). I have indeed started to fear both noises and smells and my sensitivity to both has become so bad that it has been causing me an enormous amount of misery, actually. I can no longer go into enclosed spaces where there are other people, or cleaning products have been used, unless I’ve got something I can completely cover my mouth and nose with.

Because of course the fear itself puts my body into high alert. I’m an intelligent self aware person: it’s frustrating to me to watch myself develop these fears, but no matter what I do, I can’t seem to stop it.

Which is of course why I was looking for help. And I did find it – whilst  the ‘cure’ is sysnonymous with healing with my ME, in the short term it turns out by fleeing back to husband-that-isn’t’s house I’m doing the right thing. Because it is possible to reduce the levels of sensitivity, but to do that we have to get away from the problem or if we can’t do that, do everything possible to reduce exposure

It is extremely quiet on the reserve – it’s rare for there to be unexpected noises, and even rarer for them to be loud but there is some noise which is actually a good thing: though I crave total quiet, if I had it all the time I would never be able to tolerate the mainland again. And smell wise I have a lot more control here. There are no air fresheners, perfumes are extremely rare (the odd site visitor) and aftershaves rarer still. I have bought a steam cleaner so all cleaning can be done with water, and I had already been using a loo cleaner I can tolerate. I’m making up a shower spray to replace the one D uses. There are other smells here of course – mildew and fustiness at times, but in many respects I find these less of a problem than perfume! At least I can clean them up, whereas hosing people down would probably get me arrested.

Also I have the added comfort of knowing D’s line manager understands and sympathises, which helps a huge amount, as he’s the go to person for things to do with living here.

Hyperacusis and Hyperosmia have had a really severe impact on my life over the last four months and I know I’m not alone. Nor will I be alone in not being understood by my GP, I think this is one of those problems which can only be fully understood by others who live with it.

I’m just keeping my fingers crossed that reducing my exposure will calm both my sensitivity and my incipient phobias!





How I Became Estranged From My Mother

And stepfather, and step-siblings…

I am going through another round of processing my feelings around being estranged from my Mother & co and felt I wanted to write about this part of my life here. Blogging helps me process things – and I’d like to hope that someone somewhere might benefit from reading my thoughts. People are beginning to talk about estrangement more these days, but it is still a very difficult subject for many, and still taboo for others.

Yet it’s way more common than people think. For example, my husband-that-isn’t’s Mother was estranged from her sister, and his two sisters haven’t spoken in years.

So what’s my story? Well, this is my second estrangement from my mother and her family. When I was about 28 I made a decision to cease contact with my mother and stepfather. I did try to remain in contact with my stepsister but it was tricky. I had no argument with either of my step-siblings, but as you can imagine it was very difficult to sustain anything with them: my stepsister rented a house from our two parents and my stepbrother lived in the same building and worked for them, so I became estranged from them by default, really. We were no longer close anyway, and neither of them had made much effort to stay in contact with me once I left the family home some years previously, so it was not so surprising that things worked out they way they did.

To be perfectly honest I don’t remember how I decided the first time – it was 21 years ago. Suffice it to say that my mother fits all the criteria for having a variant of Narcissistic Personality Disorder and my stepfather and I had never had an easy relationship. He did have qualities I liked (he’s dead now) but they were rather overpowered by the ones I found very difficult – especially the way he was constantly subtly undermining both me and my mother and putting other people down behind their backs. All I do remember is that I came to the decision that it would be better for me to be away from them.

What followed was difficult – an estrangement is very like a bereavement, but without the markers of a funeral, or the social support. In fact those who choose estrangement will often find themselves being treated as if they are monsters if they are not careful, because despite it being more common than we think, estrangement can trigger a lot of reactions in other people – including a fear of being on the receiving end themselves. And of course for most people, Narcissism or other abuse, and the impact it has on a child, is completely out of their experience, so it can be hard for them to relate to those who have experienced it.

So I grieved. And it was hard. Apart from my therapist, no-one supported my decision. But it was right for me.

Then my father died. I felt duty bound to inform my mother as she had, after all been married to the man once. And he lived in the same area. I had been estranged from him for years, but had never gone through the grieving process as I did with my mother (my relationship with him is a whole ‘nother story), but nevertheless as the sole child, and given that he died intestate, I was the sole heir.

So what followed was around a year of sorting though his papers – a horrible experience as he was a hoarder who had died in his bed and lain there for ten days – whilst I waited for probate to be granted. If you have ever smelt a decomposing human body you will understand the horror that was my once childhood home. Of course his body was long gone, but the smell stays. It gets into you somehow, into your hair, under your fingernails: it haunts you, you feel like you can smell it all the time, even when you are far far away. Then there were the echoes of my childhood to deal with too. No wonder I supressed my feelings so thoroughly.

My mother, stepfather and I reconciled – after a fashion – as in, we talked about nothing that had happened, all tension was buried underground, nothing was resolved and everyone pretended that it was all one big happy family again. For my part, I seemed to go into some kind of organisational overdrive. I disconnected from my emotions, organised the funeral and hired a solicitor.

Meanwhile my mother and stepfather said they would help with the house and persuaded me that I should hold onto it, do it up and sell it for more money than I would get if I sold it as it was. My intention had been to get rid of it as soon as possible, but they started talking about how shameful it was and how I couldn’t let people see it in such a terrible state – because it was in a state, believe you me.

The truth was, that they were ashamed, they were so obsessed with other people’s opinions that they couldn’t bear anyone to know about it – even though, given what a small town it was – many people already did. There was no reason for their shame, after all they were not responsible, but they influenced me, and I went along with it because I was already distanced from my emotions and I had spent 23 years of my life living with these family dynamics. Shame is powerful – painful and powerful.

I’ll spare you further details, suffice it to say that my mother and stepfather wanted money for what they were doing ‘for me’, and despite the renovations the house took over three years to sell, by which time I was really regretting my decision to do as they suggested and our relationship was inevitably breaking down.

I felt bitter too, about their desire for money – yes of course they had helped me, but bear in mind that these same people didn’t want to come to my graduation ceremony because it would be ‘too expensive’ for them to hire a relief milker, and they couldn’t be away for so long…they did end up coming in the end, arrived late, left early and my stepfather behaved appallingly, like a sulky child. Two years later they spent at least £15,000 on a lavish wedding for my stepsister, complete with marquee for 200 and horse-drawn carriage.

So, there was that. There was the fact that I was back in a ‘relationship’ where I had to do all the work – no-one phoned me to see how I was, I had to make all the calls. No-one visited me – instead the 400 mile round trip was mine to make, and when I did make it no-one was remotely interested in my life. Instead I would be treated to a monologue from my mother which would begin the moment I entered the house and seemingly not stop until I left, about all kinds of people I had never met (any mention of this fact to my mother would be met with denial: ‘Of course you know them’) and most of it negative comments about them. Stepfather mostly hid behind the paper and the TV, he was really only interested in talking to other men.

From the moment I entered the house I would have a scream lodged in my chest. I would get through the days by promising myself I could raid the drinks cabinet after they went to bed and stuff myself with chocolate. I would take long walks and play with the dog and wonder why the hell I had put myself through this yet again. At the same time I would try to be the daughter they wanted, alternating between smothering my own feelings and then getting angry with them.

My mothers sixtieth came round and I phoned to wish her a happy birthday only to find my stepfather had arranged a surprise birthday party for her and not invited me. Ouch. I suppose it was a passive aggressive form of revenge, then again he’d never really wanted me and my mother had long since made it clear that I should have been grateful he gave my 17-year-old self a home.

But still I continued the relationship for a few more years. Then something happened which left me incredibly traumatised – I was triggered into reliving a rape. I knew I had been raped, but had no real memory of it, then suddenly there it was. Reliving a memory is nothing like every day memory. You experience all the physical reactions you had at the time – it was terrifying, physically painful, my body was convulsing and it seemed to go on forever.

And it left me as traumatised as if it had just happened. I still didn’t know who my rapist was, he was standing against the lights in my memory and all I could see was a halo of sandy hair, but I had a better idea of when it had happened – I would have been around 16 or so, possibly older.

Other events followed this, difficult ones which I handled badly because I had PTSD. I was unable to talk to my mother, and the one time I tried she changed the subject (this was typical behaviour for her). I did have a therapist, which helped but I was actually spending a lot of time talking about my relationship with my mother and it was becoming increasingly apparent just how thoroughly fucked up it was.

Talk to any of my childhood friends and they would probably tell you my mother was lovely – she charmed them. A child herself, she desperately needed everyone to approve of her, so she courted them, courted their favour and they never got to see her other side. The side only I got to see. The controlling, shaming, emotionally cold side. The side which required me to meet her needs, instead of the other way round. No doubt other adults who know her now probably think she is charming too. Narcissists are by nature hard to spot, because they charm and they win people over.

It was around this time that I began to feel tired. A lot. It’s only recently that I’ve realised that this was the first hint of my developing ME – back in 2004. In fact I didn’t just feel tired, I felt exhausted and the effort needed to phone my mother and listen to twenty minutes of her talking about the minute details of her life and latest purchases, and bitching about people I didn’t know and had no interest in, seemed beyond me.

I didn’t decide not to contact them, in fact I didn’t intend to cease contact at that point. I had already been through considerable trauma and didn’t need more stress, but I just couldn’t ring. A few weeks went by. Nobody rang me. You understand that they did know I’d had a very difficult time. They may not have been willing to discuss it or support me, but they knew, all the same. My mood went severely downhill. I didn’t contact them and I heard nothing.

A couple of months later I got an angry vitriolic letter from my mother. I wasn’t able to read much of the letter, I just couldn’t take it at the time, so I burnt it. When angry she had a tongue which could flay at twenty paces. She really really knew how to hurt.

Back then all I could feel was hurt: I just couldn’t believe that given what she knew about events in my life it hadn’t occurred to her that I might be depressed or sick. These days I think she was venting the repressed anger that she had not voiced before, when we re-established contact. Even so though, the letter so far as I could see, just like everything else in her world, was all about her.

And that really sums up why I am estranged from my mother still: everything was always all about her.

I have no idea if she is still alive – I do occasionally check to see if her death has been registered and so far I haven’t found it, so I assume she is. I spent about 18 months a while back really diving deep into my feelings about being estranged, asking myself if I would regret not trying to re-establish contact if I should find out she had died. And then there was a possible inheritance, too. Given my ill health and the low income that is a result, was I willing to walk away?

The answer eventually came back a resounding yes. I was willing to walk away. I do not want their money, and I do not want their dysfunctional idea of parenthood.

In 2011 I found out my stepfather had died in 2007. That was a shock, of course. My first response to knowing he was dead though? Immense anger – I wanted to go and dance on his grave. I hadn’t known I hated him so much, I mean really hated. It stunned me. Then as I talked about it to D, something else started to come back up, something I did my best to deny and repress and rationalise away. But it kept coming back: the knowledge that he was my rapist.

There are times when I still think this cannot possibly be true. I just can’t see how it can be true. Yet. My heart says it is.

In many ways it doesn’t matter if it was him or not. I know I was raped, if it was him, he’s dead, and if it wasn’t then whoever else it was, is likely also dead. The trauma was the same regardless who the culprit was, because I was always aware it was someone I already knew and had trusted.

I found out he was dead because there was an obituary published in a trade magazine. It doesn’t sound at all like the man I knew, but then it was written by a man, who talked to other men. I of course, am written out. Only my step siblings and mother are mentioned.

I have no doubt though, that my mother and sf believed me to be evil incarnate. No doubt they thought I ‘used’ them in relation to my father’s house, even though it was their idea, not mine. This is not paranoia on my part – I know/knew these people well, and how black and white they are/were.

In fact I can hear them now, ‘After all we did for her, she just stopped phoning us – we helped her out with her father’s house and it was such a state…she always was an ungrateful girl, nothing you did was good enough. Just like her father.’

Rape notwithstanding, it would never have occurred to either of them that they too might be responsible for the situation that ensued. That this estrangement was as much down to them as it is me.

I imagine few people actually want estrangement. I suspect for many, like me, it just becomes the only possible way forward. There is so much hurt and so much unsaid that a relationship just stops being tenable. The truth is my mother simply exhausted my feelings for her. Whilst I will hold my hand up and say I was definitely not an easy teenager, I was troubled and traumatised by childhood events, never mind the rape I repressed in my teens, but more than anything I was deeply hurt by having a mother who was simply incapable of ever offering any emotional support or meeting my emotional needs, but instead made me responsible for hers.

I only really began to learn how to meet my own emotional needs once I distanced myself from hers. And I’m still working on this – I doubt I’ll ever stop.

Thank you for reading this. I hope you haven’t experienced anything similar, but if you have and are in the UK there is now a charity for estranged people Stand Alone.



Metaphor or Escape?


Consulting the Ibis (II) 2013-2015, oil and oil pastel on paper

Is art making, or other creative expression an escape for you? Or do you see it as a metaphor for life?

I am firmly in the first camp – for me all creativity is pure escapism: it took a few years to really get that sense of flow back, that we all experience as children, but these days I find it pretty easy to access. I get thoroughly involved in what I’m doing and everything else just melts away. I love this feeling.

I am intrigued though, by those people who regard creative expression as a metaphor for life – the ‘struggles on the canvas, the lessons learned, are a reflection of living’ sort of idea, or ‘art making as practise for living’. Flora Bowley talks about this a lot.

My fascination though, is not that I would like my creative life to be my practise ground for my ‘other’ life – heaven forfend, no! (Just wanted to inject some drama there), it’s more a fascination with something I just don’t get.

Intellectually, I do understand what metaphors are and I do intellectually understand what people such as Bowley are saying, but I don’t connect with it at all. Perhaps it is simply that I am not a metaphorical thinker, I am literal in every way – here’s a really mundane example for you, yesterday on the phone to my new Doctor’s surgery trying to make an appointment for the first time and finding myself flummoxed by the recptionist asking me if I needed a routine appointment or an emergency one. Well, neither, actually! I’ll spare you what followed, and I sincerely wish I could have spared myself.

Moving on. The man I no longer am with, but who is my husband and friend found my utter inability to see metaphor in films and books staggering and occasionally amusing. I felt the same way about his ability to see them. It wasn’t until I met Dave that I really became aware of how literal I was – I knew there were certain things that I did not quite grasp, but I kept them to me, like a guilty secret because I didn’t want to look stupid. And I’m intelligent enough to be able to cover up anything like that quite easily. A mixed blessing if ever there was one.

So perhaps this is why the idea of art-making-as-metaphor-for-life feels so distant to me.

Then again, perhaps it is simply that I want escape: I feel at odds with this world for all sorts of reasons, having an escape enables me to cope.

And here’s the really odd thing – I can make paintings which other people read metaphorically and write fictional stories which can be read metaphorically – of course those metaphors aren’t there for me, but I enjoy hearing that others find them and I’m glad I can make things which stimulate such interesting responses in others. It is intriguing though, and perhaps demonstrates just how fluid the interpretation of a painting or other piece of art can be. Is the metaphor in the work? Can I create metaphors even though I cannot see them myself? Or is it something that the individual viewer brings to the work?

I have rambled a bit in this post, starting out with one set of questions and ending with some slightly different, though related ones. I’m going to let it stand though, as I enjoyed the journey of writing it, so perhaps you might enjoy the journey of reading it.



Giving up Camping


I’ve had several ideas for posts swirling around my brain for the last few days, and it’s hard to decide which one to start with! So perhaps a little recap – I spent last week away from the flat from hell, and three of those days were spent camping.

I haven’t been able to camp for a couple of years, because unfortunately it’s hardly the ideal holiday for someone with limited energy. But I love camping, more than anything really, particularly near trees:I once stayed in my tent for four weeks in woodland and I was so sad to leave – I was taking part in an alternative living experiment thing. I have wanted to live in woodland ever since.

But I’m digressing – despite knowing camping was a really bad idea in some ways, I thought to hell with it, if I get exhausted, so be it. Of course I did, and I still am, and I have had to accept that camping won’t be featuring in my life again for the foreseeable future, but I did have a nice time even so.

The campsite was great – very expensive because all the pitches are private, surrounded by trees and bushes and the remains of an old brickmaking yard – the kilns were next to our pitch. Mostly they have been reclaimed by trees, ivy, brambles and grasses now, but one building forms the walls of a ‘jungle’ shower. Which I didn’t use – I used the also very rustic one with gas heated hot water. I know, I’m a wuss ;D

I spent around 75% of my waking hours simply sitting looking and watching. The rest were spent occasionally sketching, and eating. I slept around 12 hours a night, which is a lot even for me, but still I would get up feeling drunk and uncoordinated, a horrible feeling which lasted until lunchtime. Seems to have stopped again now though – maybe I was drunk on fresh air.

Anyway the trip was rounded off with a visit to the Shell Museum, which is far more interesting than it sounds:  it does contain its fair share of hideous shell ornaments, but also featured fossils and archeaological finds – and these amazing Albatross skulls, which were my favourite thing in the entire museum.


I have pretty much been unable to move since I got back on Saturday – today, Tuesday, I can feel myself beginning to recover although my legsstill feel like I took a fifty mile hike. I guess its caravans for me, now, at least for a while. I need a loo that doesn’t require me to walk to it (or, ahem, get in the car)!

ME/CFIDS CFS Hypoglyceamia and Migraines: things which might help

*Before I begin, just wanted to say thanks for your empathy and comments regarding my last post. Writing that post and reading your comments really helped me to feel more in control and able to deal with these problems. I have organised to be away for the next five days, which will give me some welcome peace, quiet and fresh air and I can’t wait.*

2. Diet

I’ve realised that in the contemporary litigious climate I need to make a disclaimer: I’m just a person with ME who has found that some things help her, and I’m sharing them here, but I’m not qualified other than that. If you choose to try these things it is your choice and I suggest you check things out with your medical practitioner (bearing in mind that some medics would reject some of these things out of hand :0 ). Oh yes, I talk about poo and farting here too😀

Apart from the standard medical advice to pace myself which I was given on my visit to the ME Clinic at James Pagett Hospital in Great Yarmouth, a change of diet has made an immense difference to me.

Stabilising my blood sugar and eating more protein and fat keeps my energy levels stable – I don’t expereince huge peaks and troughs any more- and it means I can be hungry without experiencing that horrible drop in blood sugar which brings on shaking, irritability, heavy legs, headaches and nausea – followed by extreme fatigue after eating and often stomach cramps. And whilst I still get some referred pain from the trigger points in my back (more about them another time) they no longer trigger migraines. Finally, my gut issues have almost resolved as well.

It’s notable too, that in the run up to getting really ill 18 19 months ago, I had let my diet slip and was eating a lot of carbohydrates in the form of grains and pulses, as well as eating cakes and consuming sugar. During this period I also went up to around 10 migraines a month.

And that paragraph probably gives you a heads up of the direction I’m going in! Before I go any further though, as this topic is huge and I really am not someone who remembers details, I’m going to append a list of the books which have helped me to work out the best way forward for me. Apart from Good Calories Bad Calories, which is recommended background reading, rather than specific dietry advice, all of the books I’m listing recommend the same broad approach – it will just require tweaking according to individual circumstances. Finally if your gut problems are severe I highly recommend investigating the Specific Carbohydrate Diet. Whilst this diet usually tends to focus on diarrhea, I found it gave me almost immediate relief from slow motility/constipation, which I’d had for over a year. Following the diet also helped me to work out that starch is the culprit for me too, I just can’t digest much of it and my ability to process fructose is also very limited.

And I have finally eradicated GERD – which I believe was caused by low stomach acid levels. Incidentally, GERD is also often linked to constipation and slow motility.

I will be honest though, none of this is easy, it does require extra effort, however the benefits are worth it to me. I give myself occasional holidays when I eat borderline foods, or buy some ready cooked meals that fit in with my dietry requirements. This helps me not get too fed up with all that food prep. Frozen veg are helpful too.

A note about coffee: caffeinated coffee carries two concerns for those of us with these health issues: for one it’s a powerful stimulant – not to mention addictive so it can exacerbate anxiety, ANS arousal and consequently interfere with sleep, even if you only drink it in the mornings. It also impacts blood sugar – though I have found it’s only a problem if my blood sugar is already unstable. Once I stabilised my blood sugar, I could drink caffeinated coffe without it causing instability. That said, I currently only drink water decaffeinated coffee, because of the stimulant effect. Personally, If you are struggling I’d recommend giving it up for a while at least – but wean yourself off slowly, as withdrawal can cause banging headaches.

So what do I eat? Ideally:

Lots of fresh or frozen, organic, fruits and vegetables, but I limit nightshades (burping and belching) and cruciferous veg (loud, embarrasing farting), and only eat them well cooked.

Occasionally I have potatoes which have been cooked and cooled – not allowed on the SCD though.

Plenty of mainly saturated fats – I eat/use butter, ghee, goose fat, lard when I can get stuff that isn’t a product of the food industry, and ditto beef dripping. Also Extra Virgin Olive Oil for dressing foods (empahtically NOT for cooking), avocado oil, and walnut oil – which is higher in Omega 3s than EVOO.

Coconut oil is also excellent, however I cannot tolerate coconut in any form at the moment (I could, then I think I ate too much and suddenly it started giving me stomach cramps – such are the trials of ME)

Moderate amounts of animal protein – because I don’t take much exercise my protein requirements are moderate, and too much makes me put on weight – Mark Sissons has a good article on this– so bearing that in mind: pork, beef (preferably from older animals as more nutritious and tastes better too) – fatty cuts are particularly good, as well as cheaper, all game, some offal (try this liver recipe) lamb, chicken, and plenty of oily fish and eggs. I also make stock from bones and for a sweet treat jelly from fruit juice and gelatine – from grass fed cattle. Always avoid the stuff from the supermarket, it’s been bleached and god knows what, and the animals were probably not treated well.

Nuts – I love nuts, and fortunately I can digest them without trouble. I mainly eat almonds, walnuts, hazelnuts and occasionally macadamias. I also eat some cashews – which are actually legumes, not nuts. My main issue with nuts is to not overdo it!

Small amounts of dairy – mainly in the form of SCD 24 hour yoghurt, which I strain until it reaches the thickness of greek style yoghurt. About once a week I eat hard cheese. If I weren’t lactose intolerant* I would also drink some raw milk. I’ve also started making my own sour cream.

*Myths about lactose intolerance include the idea  we can’t eat any dairy – not necessarily true. Depending on the idividual butter, cream, sour cream, hard cheese and yoghurt can be okay in small amounts – and SCD yoghurt is actually lactose free. Some can also consume raw milk. I can’t though, which saddens me as I love it.

Sweetener – refined sugar is out for me because of the headaches, I cannot tolerate maple syrup (which is just plain weird if you ask me), and it’s not allowed on the SCD. I have small amounts of honey, but I do not cook with it. Except for special occasions I try not to have baked goods (made with nuts of course) because I don’t like to heat honey and too much makes me fart like crazy (fructose). I’m currently experimenting with molasses as a sweetner in my comfort drink of the moment (which is a topic for another post).

And that’s it! Usually I don’t feel deprived, though I do have some cravings for things like bread, but the cost isn’t worth it. I do make a type of bread from cashew butter, but the main issue for me is the effort – eating like this is challenging when I’m tired, and I won’t sugar coat that. I do find a slow cooker is invaluable and I always try to opt for the ‘cook once, eat twice – or even thrice’ choice.

Roasted veggies are useful too, and almost any vegetable can be cooked this way – which saves on washing up, too. Salads are limited for me: I’ve never been fond of cold food, and raw veggies, no matter what you may hear from raw foodists, are not always better and are actually harder to digest. The only things I eat raw are carrots and beetroots, salad leaves and sprouted seeds, but you are the best judge of what is the right balance for you.

A final note: my basic rule of thumb is always to ask, ‘do I feel better or worse after consuming this?’ Clarifying what is causing problems can be tricky though, so again, if you are really suffering I recommend the SCD as an option.

If you’ve tried any dietry changes I’m interested to know how you got on. I know some people have had success with Vegan diets, and even raw food diets, but I’m afraid I am not persuaded. Before ME I used to be a vegan and had bad hypoglyceamia all the time then too. And of course there’s the problem of both diets simply not providing essential nutrients such as B12. So my personal rule is this: if I have to supplement in order to follow an eating plan, then it isn’t appropriate for me. And just in case you are wondering, the above diet provides everything we need as humans. You can supplement, but it’s not necessary, unless you don’t get enough sun, in which case vitamin D is essential.

A final note: I have avoided labelling this way of eating. I’m tired of endless debates about whether it’s correct to call it paleo, or ancestral or whatever and endless snarky remarks from opponents about baked goods made from nuts. As far as I’m concerned it’s food – real food, which often comes with dirt or leaves and sometimes  blood. If it doesn’t have a list of ingredients then it’s okay by me!

Further Information

Good Calories Bad Calories

Specific Carbohydrate Diet

Marks Daily Apple  Blog and forum, both of which offer a wealth of dietry information, personal recovery stories and recipes. I also recommend The Primal Blueprint, Mark’s book

The Migraine Miracle – highly recommended if you are plagued by migraines as it explains why they are happening and why although it seems certain foods are the trigger, in reality it’s overall diet that’s the problem. Written by a neurologist specialising in migraine and former Migraineur.

Brain Maker why what you eat matters to your brain as well as your gut.

And on the topic of ‘real food’ I recommend anything by Michael Pollan



Sensory Sensitivity

This isn’t the post I was planning, but unfortunately sensory sensitivity is on my mind continually at the moment both as thoughts and reality.

I have actually been sensitive to noise and light since birth – some noises and light conditions cause me physical pain, and I wear sunglasses for much of the year because of this. The worst light conditions for me are actually caused by cloud cover, believe it or not: for those of us in the Northern Hemisphere, those days when the cloud cover is around 90-100% but it’s not raining, and the cloud is pale grey, i.e most of the time!

Having ME has not made my photosensitivity worse, but it has certainly made me even more sensitive to noise, and added in smell sensitivity to increase the fun – together with odour receptors which do not ‘turn off’ (most people will only smell a new smell for a few seconds or so, then they will stop registering it – that doesn’t happen to me). I get something similar with noise – I don’t hear a blur of noises I hear everything seperately, rather like people who have Autism/Aspergers do, I think from what I’ve read (and yes I have and do wonder, given that this is lifelong). Perhaps the worst thing about this, besides being in places where there are smells, is trying to convey to other people what this is like when their sense of smell operates normally.

I have found that my sensitivity to smells fluctuates, according to how fatigued I am, how overloaded my other senses are and how many other intrusive smells I’ve been exposed to in the preceeding days. The effects are definitely cumulative.

And as I’ve discovered living in my present flat, prolonged exposure to things which I am sensitive to, actually causes increased sensitivity, which in turn worsens my other symptoms.

When I viewed this flat, the previous tenants told me it was quiet, and to be fair, in the evening it wasn’t bad, and Sundays were usually quite peaceful. But the rest of the time? It’s really bloody noisy. And then Summer came, and needing to open windows, and the general increase in activity that summer brings, and the people who stand smoking near my open windows, the woman who smokes with the loud grating voice which she uses, apparently, all day long and the air conditioning unit in the unsoundproofed attic just 15 feet away from my window and the throaty motorbike which accelelrates as it passes my building at 7.50 every morning and incredibly loud stereo systems in cars with open windows and…

I have been at the absolute outer most edge of tolerance. Well, beyond it really, for the last three months. It is way too hot to close the windows, and a fan only helps so much. I have done absolutely everything I can to make this bearable including wearing ear defenders.

I was just about coping and looking for somewhere else, and then. And then. A dog grooming parlour opened up in the commercial premises below my flat. I was a bit concerned about the additional noise, but it turns out the noise is not the main problem. Oh no. The problem is a hideous and frankly, in my opinion, *cruel product known as ‘dog cologne’ And I can smell it every single time it is used. Which is many times a day. This is an old building, the smell comes straight up into my living room cum kitchen. And it lingers long after the business has closed.

The owner is a really nice woman (well apart from inflicting this hideous product on the dogs) and I did talk to her  – because initially I thought it was air freshener and I didn’t think there would be a problem asking someone to reduce that. But no, it’s dog ‘freshener’, and whilst she said she would use less, it’s still invading my space.

And it’s tipped me over. I spent yesterday afternoon curled up and crying. Because what the fuck do I do? I simply cannot live with this. I was just looking forward to being able to shut my windows more often and cut out the noise and cigarette smoke, only to find that now I have to have them wide open in order to keep the smell from being nauseating, but that then means that every time someone walks down the street wearing perfume or aftershave, that wafts in as does the cigarette smoke from the people across the road.

Currently my options are: stay here and get really ill again – well, obviously not!

Stay with ex husband, as he has said I am welcome to stay there – but if the local authority finds out I will be in trouble as they pay my rent, and will see me as defrauding them, and I am tied into this contract until the 6th October.

Thinking through this I see that I probably need to get to the Docs and see if he a) is able to understand, and b) will be willing to back me up should I need it.

As I said I’ve been looking for somewhere else, but there is nothing around at the moment in my price range and in a rural situation, which is of course what I need.

Moving away is not an option as I am a) not able to cope with the stress of a relocation, never mind the house hunting and b) I need help, so I need to be near people who can give me help.

Apart from Dave, everyone I know lives in an urban environment, and of course they use smelly things in their houses, which I can’t be around. So my options are very limited right now.

Currently I’m looking at weekdays at Dave’s, weekends here, so I can sort and pack my stuff ready to move as soon as somewhere becomes available, hoping my Dr will back me up should the need arise.

Have just taken off my ear defenders as they were sweaty and I can now hear:


loud voice woman

hairdryers from the salon because the back door is open


other people talking

stationary engine running

car stereo

No intruding smells though – oh, spoke too soon, someone is smoking. Time to shut the windows, as fortunately, dog parlour hasn’t opened yet.

Hopefully my next post will be more cheerful!

*poor dogs – if the smell is bad for me, a human, upstairs in a separate room, imagine how those dogs must suffer given how sensitive their noses are?

ME/CFIDS CFS Fibro:Things Which Can Help

No 1: Yoga Nidra

Well hello out there. I have quite a few posts in mind around ME/CFIDS etc including a review of the recovery programme I enrolled in – so many in fact it was hard to know where to start! So I thought I’d start where I started, when I began researching ways to improve my situation other than what I was already doing (pacing, change of diet – I will write about these too at some point).

I’m including Fibromyalgia in this one for two reasons: because my personal belief is that ME and Fibro are related and secondly yoga nidra promotes relaxation and improves sleep patterns amongst other things and anyone dealing with a chronic illness of any description tends to benefit from these two things. Having a chronic illness is in itself stressful – so it’s always worth exploring ways of both reducing that stress and improving how we handle it.

I discovered Yoga Nidra about 15 months ago, when I was really desperate to feel better and looking for an alternative to mindfulness meditation (this is what is recommended for all sorts of conditions, but it doesn’t work for me  – I shan’t go into the whys in the interests of keeping this post to a reasonable length). I liked the sound of what I read about it, and free recordings are available on the web, so I gave it a go. I’ve since bought a number of different recordings.

I am so glad I did! Within two weeks of daily practice my cognitive symptoms had improved hugely, and I started knitting and was able to read in short bursts. Continued daily practice led to both increased concentration, much better sleep and an overall improvement in wellbeing. I am so glad I discovered it – and in fact I have since completed an (online) foundation course as well. And I continue to practise – it’s the backbone of my recovery, as far as I’m concerned.

So what is it? There is more than one school of Nidra – of course there is – so for the sake of simplicity I’m going to put the Himalayan tradition to one side, and just talk about the more modern interpretations which derive from Satyananda Yoga Nidra. These interpretations, by the way, are pretty much compatible with other religions if practised just by following pre-recorded scripts. Himalayan isn’t, and iRest is more secular in orientation, and therefore fully compatible with any other religion. I know this is a concern for some people.

The forms I have talked about here are done lying down, usually in ‘Corpse Pose’, or Shavasana, with a blanket over you (plus supports if you need them to lie comfortably). However you can also lie on or in a bed, so this is suitable even for very sick people. You just need something for the sound and a pair of headphones. As a beginner, all practise is guided: you get comfortable, turn on the recording, close your eys and away you go. You will usually (but not always) be taken though these stages, not always in this order:


Sound focus


Rotation of consciousness around the body

Focus on breathing





*Sankalpa – translates as ‘Holy Vow’, but you can also use this opportunity to state a positive intention for your health, or perhaps a statement of something you desire  – Though this shouldn’t be a material thing. For simplicity, you could compare it to an affirmation.

The process can take 10 minutes or 50 – depends on your choice of recording.

The Satyananda tradition – from which I-Rest also derives – is really a marriage of ancient yogic techniques with Western relaxation techniques. I think this is what makes it both so beneficial for ME and also what makes it easier for people who suffer with ME/CFIDS CFS etc. All you have to do is follow the instructions and lie there.

Apart from the benefits I experienced, why should you even bother with any kind of meditation? Because long term regular meditation improves immune function and whilst these articles refer to mindfulness meditation, Yoga Nidra produces the same brain wave changes as mindfulness meditation and it seems possible therefore that Nidra may also produce similar improvements in the immune system and we need all the help we can get with our suppressed immune systems. Additionally, learning to really relax will help with sleep and the ability to manage stress – essential for us.

And of course the one thing you can be certain of, is that unlike many prescription drugs, it definitely won’t do you any harm.

I feel it has helped me enormously and perhaps it can help you, too – even if you have a different chronic illness, or none at all. If you do decide to give it a try – I’d suggest a month to really see – I’d love to know how you get on.

*You can find some great free and paid for recordings here: Total Yoga Nidra

Free iRest recoding here

More about iRest here

More about the Himalayan School here – note though, Swamiji does not consider Satyananda type Yoga Nidra to be ‘proper’, but that’s irrelevent for our purposes.However if you are interested in the spiritual traditions of Yoga Nidra I can recommend his free course on Udemy – linked on his page.

I suggest you try more than one recording before making a decision about Yoga Nidra, and also try finding one in your language/accent – I prefer British accents because I’m British and I don’t get distracted by the use of words such as ‘butt-cheeks’ instead of buttocks, but I also like Spanish accents as I find them melodic and soothing.

This is an interesting article, discussing the future of research into Yoga Nidra that you might like to read: Defining Yoga Nidra



On Separation and Not Taking Things Personally

I’m not talking about the marital kind, though it is linked, but it’s not my focus. What I am talking about is the understanding that what others do and say usually has little to do with us. We don’t control it (though some think we can), but definitely by the time we are mature adults – usually before middle age, most of us have some fairly entrenched behavioural patterns.

Of course these behavioural patterns do not occur in isolation – they are products of our family back grounds, friends and the wider culture.And usually we surround ourselves with/are surrounded by people with complimentary behaviour patterns. Generally speaking, because above all we love the familiar (and there are sound biological reasons for this), those patterns will echo a person’s family of origin – who isn’t familiar with the idea of marrying one’s mother? Or one’s father?

Now you’d think, knowing all of this (and there’s plenty of research backing up everything I’ve said here) that it should be relatively easy for me, as a very self aware person, with several years of therapy under her belt, a degree in psychology and sociology and years of reading around the topic (trying to understand my self and others is a lifelong obsession), that I would find it relatively easy to separate myself from others.

On the contrary: it has taken years of concerted effort not to react to all sorts of things other people do and say. I’m not talking about suppressing my emotions here, just about learning not to immediately open my mouth. Or violently tap my keyboard, which is the more frequent scenario.

Having ME/CFIDS does not help – those of us with ME know full well that even small things can really get to us – our systems are so sensitised that it does not take much to throw us completely out of balance. And the horrible anxiety which is a feature for many makes us irritable and reactive. We can’t help this, but it’s shitty, both for us and those on the recieving end.

I do feel having ME has really held me back in many ways – but this is not a blog about ME so much as my realisation that, finally I am getting to a point where I don’t take every damn thing personally. And that is a cause for celebration.

You see when I was a child I learned this: What other people think is the only thing that matters.

And: I am totally responsible for what other people think and feel toward me.

Woah. Talk about a recipe for anxiety and paranoia! Person over there I had a conversation with yesterday is in a grumpy mood and doesn’t say hello today? Must be my fault!

Someone is nasty/bullying/sarcastic to me? Well of course it’s down to me! I am raped? Well of course it’s my fault. etc., etc., et painful cetera.

Put like this it all sounds slightly ridiculous, I know that. But when you spend the first 23 years of your life surrounded by this message on a daily basis (my stepfather was the same as both my parents in this regard and I didn’t leave home til I was 23) it is so ingrained in your psyche that even when you know it’s ridiculous to think this way, the feelings associated are so powerful and strong as to be impossible at times usually to overcome.

And in fact, it doesn’t take 23 years to create that kind of conditioning – whatever we are taught in our first four or five years is our default setting; put us under stress and we will revert to that learning. This is also the root of that tendency to return home later in life and adopt familial patterns that were once rejected.

It takes tremendous will and determination to overcome early conditioning, yet I regularly read things in self help books and on the internet suggesting that not taking things personally is actually an easy change to make. I certainly haven’t found it so. And I’d be pretty surprised if anyone had – maybe I’m wrong though?

One of my triggers, for example, is unrequested advice: this comes partly I think from the years with my stepfather who was constantly telling me how to live my life, how I couldn’t cope without them etc, yet when asked directly for real advice I actually wanted he wouldn’t give it. He’d say something like, ‘well if you do what I say, you’ll blame me if it goes wrong’. I shall not say what I think of that! Partly it also comes from that early conditioning I mentioned above.

And partly from that fact that unrequested advice is almost always disliked: it tends to make us want to do the opposite, because we want to preserve our freedom to choose for ourselves and not always but sometimes,  it comes with other unpalatable things like superiority or condescension – vis my stepfather. And when it’s repeated over time it actually becomes a source of stress, whether we realise this or not.

So I get annoyed at people invading my personal freedom to make my own mistakes (dammit!) and because I feel under stress I switch to my default setting and immediately assume that these people have a poor opinion of me, see me as a child and that matters because what other people think matters and it’s my fault if people hold me in low esteem so I must be a shamefully bad person who can’t deal with life and ohmygod I hate myself…then add in the fact that I have a quick temper AND I have ME/CFIDS and what do you know – I get angry. I react.

And this has not been good -for me. And for those people who occasionally give me their advice who I do, in fact, like. Now don’t get me wrong, when it comes to saying something I usually try to be civil at least (but I am a direct person, so I don’t wrap it up), and with those people who matter I have usually managed to work it out, but. There are quite a few people out there who would probably tell you that I’m unpleasant and ungrateful, that they were only trying to help, and I got angry.

Unfortunately  the stress my own reactions have caused me has been high, and this needed to stop.  I want to share things freely on the internet, and be able to deal with comments I find difficult without getting angry and feeling under stress. Because I know such comments will happen at times.

And this is one of the reasons why I’ve worked so very hard to separate myself – I want to write freely here, and elsewhere, about whatever is crossing my mind, and I want to accept that that means people are free to respond as they like and that it has nothing to do with me what they say – trolls notwithstanding of course.

And I’m glad to say that finally I seem to be getting there!

And to bring us full circle regarding marital seperation – I wasn’t able to seperate peacefully from my husband until I fully accepted that most of his behaviours which I found destructive and hurtful in our relationship, were actually nothing to do with me. Accepting that both allowed me to accept that I could no longer be with him, and for it to be a peaceful, mutually respectful separation.

This is an immensely long post – thank you for reading it, I hope you found it interesting!