So Why Do CFS Sufferers Get Cognitive Symptoms?

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Man in an Orange Sweater, Sarah Fincham 2017, mixed media on paper, 8 x 8″

I sincerely doubt I am the first to make the connections which just fired in my brain this morning, but I’m also sure I won’t be the last, so I wanted to share my small but significant aha moment. I’ve also got some ideas for both helping calm the stress response, and reducing cognitive symptoms.

You’ll know if you’ve been here before that I believe that stressors are what cause ME/CFS, and that the illness itself is an out of balance, dysfunctional Autonomic Nervous System. We swing between over arousal (tired but wired, pushing through, keeping going with no rest) and underarousal (total fatigue, brain fog, no energy, flu like symptoms)*

And you probably already have at least some understanding of what happens when the body is stressed and we go into fight, flight, or freeze: blood is diverted from the pre-frontal cortex, the digestive and reproductive systems, we stop thinking and start reacting, our muscles are pumped with blood and our heart rate goes up. Our senses are enhanced, and everything is on full alert.

And this is why we get cognitive symptoms: we actually have less blood flow¹ to the prefrontal cortex overall, and I believe this is a result of our dysfunctional ANS.Because it is dysfunctional, blood flow does not return to the prefrontal cortex as it should, following arousal.

But what to do? Well I found that my cognitive symptoms, which were severe in 2015, improved within two weeks of practising Yoga Nidra – so starting a Nidra practise will likely help! But why? Because it calms us. And that’s what we need, to calm our fraught vulnerable systems which have been chronically overstimulated. To give our ANS a chance to rebalance itself and relearn to direct blood back to our prefrontal cortex: the thinking, conscious part of our brain.

Unfortunately one of the reasons a lot of us struggle with meditation when we have CFS is because our minds race so much and we have high levels of anxiety, due to the illness. I had this, plus intrusive imagery. Well meaning, experienced, meditators say that everyone has monkey mind and I know that’s true, but for us, it is monkey mind x 100, and that can make some meditation styles undoable.

That’s why I tried Yoga Nidra myself – because I could not cope with what happened when I tried meditation styles I’d used prior to my illness. I think Yoga Nidra has another advantage though – it also takes us into a deeply relaxed state very easily and this is exactly what those of us with CFS/ME need.

However we also need short-term strategies for daily stress management: symptom tracking can help with this, as we begin to identify what triggered our symptoms and what we were doing or thinking prior to worsening. But we also need tools to deal with stress in the moment, because in my experience so far people who develop CFS do not know how to self soothe and have few resources for dealing with stress or other less pleasant feelings, coupled with a tendency to push through limitations.

So the first step is to pay attention to limitations and accept them. Right now, right where we are, we need to practise acceptance. The second thing we need is to learn how to soothe ourselves, to find things which comfort and calm us, and then do them. When my Hyperosmia (heightened sense of smell) was at an all time high the nicest thing I did for myself was introduce things into my environment which smelled good to me. I now use calming essential oils regularly, and burn Tibetan Healing Incense. I found some excellent information about which essential oils to use here. Interestingly my Hyperosmia lessened quite quickly once I began to fill my life with positive olfactory associations.

Sesondly we need to try to bring into awareness our early warning systems – this is a journey I still struggle with: I recently attended an event which was held in our village hall. The acoustics were strange, and the noise level of thirty people talking was deafening. Additionally I needed to eat and had thought there would be something suitable there, but only sugary things were available. I knew I was getting stressed but I didn’t remove myself. Consequently, even though I was only there for an hour, I was so wound up afterwards I picked a row with D on the way home. Not constructive for either of us!

But there are things I, and you can do: one is to simply place your hand on your heart and focus on your heart beat – even better, go somewhere quiet and place one hand on your heart, the other on your forehead and again, focus on your heart beat. Placing a hand on our hearts probably doesn’t need explanation, but why on your forehead? Because, energetically, your hand is an electro-magnet and will draw blood back to the pre-frontal cortex, giving you your power of thought back. If you think energy medicine has no validity, that doesn’t matter – remember we often instinctually put our hands to our foreheads when stressed, so it obviously has a calming effect.

We can also just breathe. Long slow breaths: even better go outside, stand barefoot and breath. Use essential oils, take Rescue Remedy, if it works for you, and finally if you have any suggestions which aren’t mentioned here, please share them. Sharing stories and resources is a powerful healing we can all benefit from.

And what to do when your system was triggered, and you found yourself flooded with adrenaline, and nowhere to release it? Move your body! Do what animals do and quite literally shake it out, pace up and down, dance even. Do whatever you can to use the adrenaline constructively and discharge the response. This should bring on a feeling or relaxation, which is normal and healthy. This may sound weird, but try it, because it really does work. And it’s far better than picking an argument.

There is of course one more thing we can all do: let ourselves off the hook when we don’t do the things which help. The worst stressors are not external, they are internal and beginning to recognise them can transform our experience. But that’s a topic for another post.

Much love,

Sarah

*paradoxically, even when we swing into underarousal some of our stress related functions don’t shut down so we can end up with hyperosmia, photosensitivity and hyperacusis,  for example.

¹Biswal B, Kunwar P, Natelson BH. Cerebral blood flow is reduced in chronic fatigue syndrome as assessed by arterial spin labeling. J Neurol Sci. 2011 Feb 15;301(1-2):9-11. PMID: 21167506

Bodies Are Like Books

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The Last Flight, Sarah Fincham SOLD

I often think I should have the words, ‘Don’t Push The River, pinned to the wall in front of me, together with ‘Take The Path of Least Resistance’. Not only because of my personal tendencies to take the opposite approach, but also because society is constantly telling us to do the opposite:

‘You’ll never feel ready, so just do it now’ (in my experience this is so not true!)

‘Go for it’

‘Obstacles are just lessons’

‘You’ve got to put it out there’

‘Show your work’

‘If not now, then when?’

You know the sort of thing. And I expect for some people they are true. But not me. And I have known this for a long time, but until very recently it has been very hard to listen to the tiny voice inside me, to obey the resistance and not judge it negatively. To wait for the moment when the timing feels just right.

Because resistance is just fear right? But what if it isn’t? What if resistance is just another form of intuition? What if, for me (and maybe for one or two of you, as well), resistance is actually wisdom, telling me when something isn’t for me, or when the timing simply isn’t right?

I wrote here about learning how to listen to the small voice, and I do most of the time now, but the physical resistance I often feel is harder to listen to. I feel it in all sorts of circumstances – maybe I want to buy something but I can’t quite seem to make the decision. Or I think about doing something and I feel a weight in my solar plexus. Partly it’s my own naturally skeptical mind saying I shouldn’t listen, but it’s also all of those messages from the internet – those ‘inspiring’ quotes – interfering with my own personal brand of wisdom.

Learning about Energy Profiling has helped somewhat – if my energy is like a river, then the path of least resistance makes complete sense in terms of my inner guidance: what does water do when it meets an obstacle? It flows around it. And if it can’t do that, it builds up until the pressure is such that it’s greater than the obstacle in its way. Either way, the water flows where it wants to, sooner or later, when conditions and timing are just right.

And clearly, it does not need pushing!

It’s obvious though that this method would not suit everyone. Part of the problem with the world of personal development and all it encompasses is the ‘one size fits all’ mentality which really dominates. Perhaps that’s why so many of us end up with piles of books which we once thought contained the answer – and why so many of us feel like failures when the techniques described don’t work for us.

But they don’t work because they were never written with us in mind in the first place. We need to let go of the belief that it is us that are the problem, and begin to absorb the idea that actually we are our own solutions.

And maybe the place to start is not within the pages of a book at all, or within our own minds, but within the pages of our bodies. To learn how to read them like books:  books written in our own language which make sense, perhaps, only to us.

And the one and only resistance we really do need to go through, is our resistance to understanding our own self knowing, our own intuition, our own wisdom.

Love,

Sarah

 

 

Things People With CFS Have in Common

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Blue Pool, Sarah Fincham, mixed media on panel, 12 x 12″

Writing this post makes me feel a little uncomfortable: many people with ME/CFS hate any suggestion that there is a psychological aspect to CFS. They feel they are being blamed for the illness, or it’s the next best thing to saying ‘It’s all in your head.’ But I am doing neither here, I want to be clear about that. Of course I know CFS is a ‘real’ illness, in my opinion it is related to stress, but it is not psychosomatic. That said there is nothing wrong with psychosomatic illness anyway, that just means something has traumatised you, or is distressing you and you have pushed it out of awareness, or blocked it and it is now causing you a great deal of stress which is manifesting in physical symptoms. If that is happening to someone, it is serious and it does need healing. But it is not what’s happening with ME/CFS.

However, like it or not certain psychological traits or issues are almost universally found amongst people with ME/CFS, and for any recovery to be possible we do need to be honest with ourselves about how these issues present in ourselves. Because left unaddressed they all cause a huge amount of internal stress which helps perpetuate the illness and/or makes it worse:

  1. Perfectionism/holding oneself to impossible to reach standards.
  2. Desire for social acceptance
  3. History of pushing past limits
  4. Driven and/or hardworking
  5. Childhood trauma or stressful childhood environments
  6. Tendency to neuroticism (which is not a trait, but more likely to be the result of stress or trauma in childhood)
  7. Poor stress management skills
  8. Highly Sensitive.
  9. Introversion

Whilst the first seven issues have been identified through various research projects, the last two are based on my own experience and conversations with others who have been diagnosed with CFS/ME.

The first seven issues also have something else in common – shame.

Each of them has a relationship to shame: holding oneself to impossible to reach standards is a defence against shame. Desire for social acceptance (which is of course never fulfilled, if it was we wouldn’t have it) is born of not feeling good enough, which is in turn related to shaming childhood messages. The history of pushing past limits is again born of shame: we don’t feel good enough unless we’re achieving or doing, but because shame is about being, no amount of doing ever compensates. Same with being driven, or hard-working – it’s linked to the perfectionism, too. And childhood trauma or stress causes shame. And poor stress management is born of not being able to soothe oneself. This is common amongst those whose feelings were invalidated as children. And yes, invalidation is shaming too.

Introversion and higher than usual sensitivity on the other hand are inherent traits – the sensitivity, according to Elaine Aaron, is linked to biology and Jung believed Introversion and extraversion to be natural tendencies. And I think most parents would agree with that.

This is purely speculation on my part, but high sensitivity means we tend to feel things deeply, which makes even mild shaming a very intense experience. Our sensitivity to others too, combined with shaming may well be the drivers to developing over achieving, driven, perfectionistic and hard-working tendencies.

The good news is because the first seven issues are developed or acquired rather than inherent, they can be changed. We can learn new ways of being and we can heal the shame.

Now I want to say here really clearly that I don’t think any of the above causes the illness. But I do think they are contributing factors: from childhood we have asked too much of ourselves and for those of my generation and younger we have grown up in a world which has changed at a phenomenal rate, and continues to do so. It is also noisy, bright and over stimulating, full of toxins and just generally a stressful environment for people with higher than average sensitivity. Especially when we don’t know how to manage our stress. And when you put these things together, add in a major stressful event, or toxic exposure, or chronic stress plus a virus, then you have a recipe for illness.

Like I said I don’t think the traits themselves are causal, but they certainly perpetuate the illness and I have had to deal with all of them over the last 12 years, in one way of another. And the really big one has of course been the shame and self loathing.

Doing so hasn’t made me miraculously better. I wish! But it has changed me. And I look back now and see that despite that drive and the ridiculous standards I was always clear that I needed plenty of down time. That for me, a weekend of walks and reading and cups of tea was perfection. I like forests and silence, I have never wanted fame, or cared about having a magnificent career – and for a long time I felt ashamed of this  – but now I can own that, and instead of feeling that was a problem in me, I can see that there is no issue at all there. The kind of life I want is exactly suited to the person I am.

Now as I contemplate my future I’m thinking of a four-hour working day, flexibility during the week and no work at all over weekends, not even an email. I’m thinking of taking a month off in the summer and at least a fortnight at Christmas.

I’m thinking about time to garden, to read, to wander through forests. but most of all I’m thinking about meaning: Meaningful work and meaningful play. Things which are impossible when we are driven by shame and low self-esteem. Things I couldn’t contemplate when I was driving myself to do just one more thing, or beating myself up for failing to be perfect.

Love,

Sarah

 

 

From Self Loathing to Self Love

 

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Fox Contemplating the Rising Moon, Mixed Media on Paper, 30 x 45cm, Sarah Fincham 2016

Until very recently – the last couple of months in fact, I have struggle with self hate. Actually hate isn’t a strong enough word: what I felt was a vitriolic self loathing and utter disgust towards myself.

I was perfectly capable of also recognising positive traits in myself and of seeing good things I had done, but this did not change the fact that my feeling towards myself was self loathing. I would wish I were someone else, berate myself for failing to live up to my potential (utterly oblivious to the fact that non-one can realise their potential if their internal monologue is telling themselves how awful they are constantly).

More mornings than I could ever count, the first thought I had on waking was quite literally, ‘I hate myself’. I did not want to be me. Perhaps it’s needless to say that I have suffered from depression for large chunks of my adult life. And my childhood too. I wrote about one such period here. This post is one of the most read posts on this blog, sadly. I’m glad it helps people who also struggle with this issue, but I’m sad it’s so needed.

I can actually remember the day I first felt spontaneous joy as an adult, it was such a novel feeling. I’m sure I had felt it at times as a child, because no child is born hating themselves, but by the time I was in my twenties I had forgotten what joy felt like. Then it happened, I was cycling to work, the sun was shining and suddenly this feeling burst through me. I feel tearful remembering it. I still hated myself too, but this feeling was a glimpse of another possibility, spurring me on to keep going, keep trying to heal.

All of us on healing journeys get these moments, they are necessary and they increase in frequency the further you travel. But despite that increase in moments of joy over time I continued to feel like I was a despicable person deep down. My self hate was so intense, so total, that I was unable to voice it in therapy. The problem with self loathing like that is it has its own logic which goes something like this: No one else hates themselves like this, so that must mean I’m really as bad as I believe I am, because if I weren’t I wouldn’t hate myself. So I can’t tell my therapist I hate myself, because if I do she will see how awful I am at my core.

And so those of us who need more than anything the gentle mirroring of someone who can really see us, are kept trapped in our own isolated circle of hell.

But I have escaped. It seems miraculous now, perhaps it is, but I have moved from self hate, through choosing myself and into self-love. I am finally happy to be myself. How did this happen? Earlier this year I began working through forgiving everyone who ever hurt me (no, this is not a tale of how forgiveness healed me, but it is a part of it). I began this process by doing a daily ‘Cord Cutting‘ practise for a month. This is something I have done before – I like it because you can see it metaphorically or you can interpret it literally depending on your beliefs. Either way it will work.

I also like it because you cannot force it: if you have unresolved issues with the person and are trying to force forgiveness because you think you ‘should’, or others are telling you it’s necessary, it will simply raise those issues so you can deal with them. Forgiveness cannot be forced and can only happen if we want it to, if we are really ready, and feel it is necessary to us.

And as I was working through my month of cord cutting I also discovered a programme using the Emotional Freedom Technique for CFS. To be honest I had not had much success with EFT in the past and had given up on it, but Kelley’s book was only 99p that week so I thought I’d give it another try. When I decided I was going to heal my CFS I knew I had to be willing to try absolutely anything. So I read the book, I really related to Kelly and her story – she believes CFS is linked to being highly sensitive – and I also liked her approach of listening to the symptoms. This has been invaluable for me, and I will write more about it another time, but for now let’s just say I was persuaded and I signed up for her online course.

Though the course I learned how to use EFT effectively on myself and since then I’ve been working through basically every unresolved issue in my life. Because although I went through the cord cutting I still had a lot of hate and resentment towards those who had hurt me, so I worked through that. And I started working on some very deeply held beliefs about myself.

And as I was doing all of this, something interesting started happening during my daily Yoga Nidra  practise: I  started to feel genuine love for myself flood my body. It didn’t, and still doesn’t happen every time, but it does now happen pretty regularly.

This prompted me to try using EFT on the feelings of self loathing I still had, and I cleared them, just like that.

It took minutes and an entire life to move from self hate to self love.

Since then I have also found DYT, learned more about my nature and become so happy with who I am, I really can’t believe it. I feel pinch myself happy, just simply because I am alive and I’m me. I don’t have to do or be anything to feel it. It is, quite honestly, amazing.

And when shame gets triggered, which it does occasionally of course, it is far less severe, much more easily passed through and it is much more easy to stop any negative self talk before it even starts. I have even been able to post photographs of myself online. My official stance has been I don’t do it because of previous experiences with some unpleasant creepy men. This is true, but there was another, more compelling, reason: I could hardly bear to look at photographs of myself.

The healing I have done over the last few years is deep and profound.

Sometimes, in the past, when the self loathing was really bad and I was in despair, I would wonder if I was going to have to cope with this for the rest of my life. The thought was horrifying. I worked so hard to overcome this, for so many years and progress was slow and at times non-existent. To be free of it is nothing short of miraculous, and I wish it for everyone who is suffering in this way, or in any other.

Much love to you,

Sarah

 

Seems Like I’ve Had CFS my Whole Life

 

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Girl with a Plait, Sarah Fincham, mixed media 22x16cm

I am continuing to reflect on the insights I’ve been getting from learning about Energy Profiling, which I first wrote about here.  What an interesting journey this is turning out to be.

For those of you who don’t know what it is, this is what you need to know for the rest of my post to make sense: There are four types of energy, we are all a mix of all four to different degrees but we all, also have a dominant energy which moves through us. This is not personality, which can be learned and shaped through experience, this is something we are born with, and never fundamentally changes. We do not display all of the characteristics of our dominant type, usually around 60-80%.  We also have a strong secondary type, and here’s where it gets very interesting: if for whatever reason we feel it is not safe to be who we are when we are young, we may bring forward our secondary energy and live from that. Doing so puts us out of balance, however, and our secondary energy may be of a significantly  different level of movement to our dominant, which can cause all kinds of problems.

I am a dominant Type 2, and as such I am sensitive, physically and emotionally, and need a slower pace and plenty of downtime and alone-time. My energy flows like a river, steady and peaceful. (There’s far more to it than that, but I want to keep this post manageable! ) My Secondary energy, however, is Type 1: Type 1 energy is animated, upward and outward, social, random and light.

Can you see the potential issue there? Especially when I realised I started living from my Type 1 energy much of the time as a child and that continued until shortly before I developed CFS.Why did I do this? To try and cope with a world which didn’t welcome my sensitivity; to deal with my job as hair stylist which I found hugely draining; because not all of my feelings were welcome at home. I was supposed to be happy, not sad, or crying. My mother couldn’t even hug me if I cried. And my unhappiness was labelled as ‘moodiness’, an invalidating and shaming term if ever there was one. No doubt there were many other reasons as well – all having their roots in a deep need for acceptance and love, which I felt I simply wasn’t getting as my natural Type.

Of course I was not my Type 1 self all the time, that would have been impossible, instead what I began to notice was that I had two speeds: Fast and Stop.

What is the essence of unmanaged CFS? Stop, definitely – and do-as-much-as-you-can-when-you-have-the-energy at other times: Fast and Stop, Boom and Bust.

I have spent the whole of my adult life swinging from periods of high energy living, which lasted until I collapsed. Often literally. I would ‘breakdown’, giving me the opportunity to go inward, retreat from the world, rest, hide, do the things I was denying myself the rest of the time. And I abused alcohol during this period too. Very badly in my teens and twenties, then gradually tapering off into my mid thirties and finally stopping about 9 years ago when my body just said No. Stop Now.

CFS/ME is characterised by periods of Sympathetic Nervous System over-arousal (extended periods of fight or flight, feeling wired but tired, getting so over excited about good things that you can’t sleep for days), followed by a Parasympathetic slump which can last for months. As I look at this now, and back at my whole life I’m seeing the entire thing as an increasingly rapid swing between boom and bust, until finally I tipped over into illness.

Blimey. I was going to get ill no matter what happened. I’m really glad that in the belief it was solely stress and trauma that caused my illness I have spent a lot of time working on all kinds of unresolved issues, because I feel so much lighter as a result. But.

I am completely convinced now, that this illness is equally a result of how I have lived my adult life – yes trauma has certainly been a causal factor, stress even more so as the way I was living was highly stressful to me. But whether you think Energy Profiling has any validity or not, living as I did, swinging from one extreme to another for years, well I think I was setting myself up for illness. I’m just extremely grateful that the illness which has come is not life threatening. The picture could have been a whole lot bleaker.

And this illness, which like any chronic illness feels at times like a curse, has in fact taught me how to live in a way which honours my sensitivities, my need to spend a lot of time ‘doing nothing’, my need for quiet and my need for a radical self-care practise. None of which I was capable of before. I have also developed a robust spiritual life too, something I yearned for, but could never quite allow myself before. And of course, most vitally of all, it has led me back to myself, to my truth.

I’m acutely aware at the moment though, how this swing between Energy Types still plays out, and how for me, there is an  association between happiness and Type 1 behaviours, and sadness and Type 2 behaviours*, and this is reflected in the swinging back and forth pre-illness too. My breakdowns were all of the emotional kind. The problem was, although they were golden opportunities for change, the self loathing I carried prevented any real change from happening. Even though I always turned towards therapy, I could never go deep enough, so I would go just far enough to recover and then slip back into my old ways.

CFS is basically my Rock Bottom.

I’ll be writing more about all of this soon.

Love, Sarah

* the association is purely down to my experience – these Types are not actually associated with these particular emotions. 

Listening To the Small Voice

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Posts are always better with pictures,IMO, so I’m going to post images of my paintings which have at least a tangential connection to my words! ‘Sleeping Shaman’ SOLD

I’ve just pulled myself away from an online exchange which basically began with a comment I made. I aired my opinion about the Medical Medium (Google it, I’m not linking). My words were actually conservative, given that my actual opinion is that he is a charlatan preying on vulnerable people: ‘I have a low opinion of him’. Of course there was one person who rushed in to defend him: She is currently getting benefit from his protocol and told me I should read the book. I have of course, I would not have said even what I did, without having first researched him and his work thoroughly. I want to get well and I will consider any possibility, however I do check things out pretty well first and in doing so I found his advice to be rubbish and I have serious doubts about his claims to be guided by a spirit second only to God. Anyway, apparently his private FB group is full of success stories. Strangely, I can find nothing at all on the internet about people who’ve had success with his protocol, nonetheless, she claimed there are many.

But really that’s not the point of this post – I’ve included it as an example of listening to that quiet voice inside which says, in this case, ‘walk away’ (-okay, also to air my opinion – but this is my blog, I’m allowed!). Just as this woman will not change my opinion, I will not change hers, particularly as she didn’t seem to believe I’d read the book.

In the past I would not have walked away from this exchange, I would have got quite stressed about it, and I would have wanted to be right. Not just for me, but for her, too. Instead I heard the small voice, maybe not immediately, but I did hear it, and I walked away.

My journey with CFS has had this learning at its core. I did not used to heed this voice. Not when I was tired, not when I had had enough of chores and needed to relax. Not when I made yet another commitment to something I did not really want to do. Sometimes the voice would yell: it wasn’t a small voice anymore, but a screaming child, saying ‘I don’t want to, I don’t want to’. My therapist said I needed to listen to this voice, but I wouldn’t. I wouldn’t because it got in the way, because by that time the voice was so frantic that it no longer wanted me to do anything at all. I tried other ways of working with it, anything but simply hear it and follow the wisdom.

Because it was wisdom. But I heard it as fear. And because I heard it as fear, I thought it was wrong. Unfortunately I was the one who was wrong. That voice knew I needed to slow down, to reassess, to heed it.

The voice was me of course, whether you want to call it my ‘inner child’, my ‘authenticity’ or my ‘inner knowing’. I continued to hear it as fear, just as I was taught as a child, and then things happened and I got sick.

I used to think I got sick only because of the stressful things which happened to me but a couple of months ago I had a real flash of insight. I saw myself age 26, trying to explain to my mother how I really had trouble handling stress. At this time in my life the voice was screaming too. And I was ignoring it, continuing as I had been, living in a way that was slowly but surely wearing me down.

One of the biggest lessons of Pacing which was, and still in some places is, the recommended main management tool for CFS, is learning how to stop before you feel tired.

Turns out, that’s easy if I listen to the voice. She actually knows when to stop. She knows when I’ve had enough and more would be foolish. And as I’ve listened she has become stronger, her voice is louder and calmer.

It is also the voice of an adult now. An adult who trusts that I will no longer push it. That I will choose relaxation first, and not push to do everything I ‘must’ first, so there is no longer energy to wander in the forest.

Interestingly she says yes more now, too. As my energy grows I want to do more things, and so long as I don’t try to do *all the things*, she’s happy that we are headed in the right direction.Has my energy grown because I listen? I do wonder.

Either way, now I’ve stopped pushing I am, strangely enough, so much happier.

Love,  Sarah

I’ve Been Down a Rabbit Hole

Hello, this is me, after a long overdue haircut. Not the best photos, but I think you can see enough. If you do take the profiling course, you ought to be able to tell me what type I am, it’s fairly strong in my face. And my blog posts are a pretty big clue, too. I’d love to hear what you think!

And then some. I’m certainly not done with it yet, either! but it is something I’d like to share. Just before I went on holiday I discovered Carol Tuttle, she was talking in a documentary called The Abundance Factor which I was half watching as I was knitting. I had no idea what her work was about – which is a really good thing because I’d have walked on by – but what she was saying resonated with me. Also, I was thinking about having my hair cropped at this point and I like her haircut!

So I looked her up – and found Energy Profiling. It has been quite the journey since then. The Energy Profiling course is free – well, it costs your email, but there’s no other cost. And as you see it seems to be all about beauty. Like I said, had I just seen the site I would have passed it by as not for me. But I was curious about Carol so I signed up.

I’m so glad I did. To say this resonated with me is an understatement (even though I got my type wrong first time around). Although this is indeed ‘Beauty Profiling’, it’s beauty profiling from the inside out, the idea being that you identify the energy that expresses itself through you, then dress accordingly. There are four main Types, and we are each of us a blend of all four, but one energy is always dominant and it is evident in the way we move, sit, gesticulate and in our facial features, as well as in aspects of the self.

Just an aside, this is not a personality thing, it runs much deeper than that: personality can be learned, or developed through painful experiences – many of the traits we think are actually our personalities are in fact defences against pain. This energy, on the other hand, is with us from birth, it is the basis of our authenticity. Because I have often felt lost, and as if I don’t know who I am, I found the course tremendously profound in it’s impact – at least once I started to really see myself. I’ve had an awful lot of ‘Oh so I do..’ moments!

I would encourage you to check it out, as I said the first part is free anyway, so it costs nothing but your time. Since taking the course I have read one of her books, ‘It’s Just My Nature’, and am just about to read another – ‘The Child Whisperer’. The second is actually a parenting book, but people who’ve read it have found it healing and useful for understanding their own childhoods in a different light.

And I have continued to gain from this perspective: I also now have an understanding of how my energies – my Primary Type and my Secondary intersect with my illness.  I can see how  living from my secondary energy has been a big part of me developing my illness. I have had other models for looking at this, but Energy Profiling whilst it might sound a little woo  woo, has actually given me some really practical ways of dealing with this as well as raising my awareness.

At another level it’s a really healing journey regarding my femininity too. I was raised by my mother to see appearance and attractiveness to men as everything. Other women did not matter, what happened inside did not matter, what mattered was how you looked and whether men approved of it. I don’t think I saw my mother without make up until I was in my thirties! And of course I was deeply affected by all this – so much so that I went on to live out my Mother’s unlived life: I trained as a hairstylist. the career she had desperately wanted but was not allowed because you had to pay for apprenticeships. She had to go work in a bank, instead.

As you can imagine appearance was everything at work for me, too. When I finally managed to extricate myself from that environment, thanks to encouragement from my boyfriend at the time and a realisation by myself that I was going to be so very unhappy if I carried on as I was. I applied for and arrived eventually at university and simultaneously began to reject this focus on my appearance. Apart from anything else, I just wanted to fit in. And after some years in a fairly radical feminist environment I developed a lot of shame around looking ‘feminine’. So no I not only had shame about my big bottom, and my wobbly thighs, and my bumpy nose and on and on, I also had shame about altering my appearance in any way too. As I write this, I see I was pretty wounded about my experience all  round.

As if that weren’t enough, to be honest, dressing myself had always been a bit of a struggle. I had no idea what suited me, I never seemed to feel comfortable in anything and mostly it made me miserable. My mother had been of no help despite her beliefs, as she was a completely different shape and build to me.

So I gave it up – not completely – every now and again I would try things out for a while, start wearing make up again, experiment a bit. But I had no confidence in my choices, and always felt uncomfortable. And I felt it was shallow, conforming to the Patriarchy, acting as if my only worth was in my appearance, not in my brain and my being. I was extremely derogatory about ‘girliness’ and loathed anything pink.

Really, over the last few years, whilst I hadn’t given up completely I had stopped even bothering most of the time. Lack of energy also plays into this of course, but I quite literally wore the same pair of earrings – lived, slept and showered in them – every day for over three years. And not even so much as a smidge of mascara sullied my lashes for even longer.

And that’s fine. Except when it’s a rejection of part of yourself. Which it was. I don’t mean I really am like my mother, I could never get up at six and put on make up – that was never my style and never will be. But being basically groomed? Well this does make me feel better. As does putting on colours which suit me, and clothes which feel comfortable but a little smarter than I usually do.

So I’ve been playing around a bit, wearing some different clothes – even changing my earrings! – and although posting my photo on this blog, and writing about clothes and makeup feels naked and exposing it is fun, actually, and even pleasurable to allow myself something I have thoroughly rejected for years: girliness. So yes, I signed up for the paid course and joined the group. And found a whole host of women with whom I have so many common traits it’s uncanny.

And I’ve worn pink. Yes. Apparently it’s the colour of self love. Interesting, no?

p.s. I’m not affiliated in any way, I just found all of this useful, so I’m sharing.

Love, Sarah

More Gut issues: Low Stomach Acid

Disclaimer: I am not an Amazon affiliate, nor am I associated with the author of this book, but I have found it useful and this feature allows you to read a preview by clicking on it.

So there was something I forgot when I was writing about gut issues: low stomach acid. Increasingly it is being recognised that low stomach acid is quite a common problem, affecting older people, those with hypothyroidism, other gut issues and of course often, people with ME/CFS.

All too frequently however the symptoms of low stomach acid which might include GERD, heartburn, indigestion and bloating and burping, are diagnosed as excessive stomach acid problems. Doctors then prescribe acid suppressing medication which is frankly, poison to the digestive system. And constipation, another symptom associated with low stomach acid, is rarely, if ever, linked to it by most front line practitioners.

If someone genuinely has excessive stomach acid then acid suppressing medications can be a useful short term tool for management, whilst the real issue is investigated, but all too often they are prescribed repeatedly causing more and more problems in the longer term. I won’t go any further into this issue, because I don’t feel qualified, but reading the above book, will give you more information if you feel this is an area that’s may also be a problem for you.

What I do want to talk about here is low stomach acid in relation to CFS/ME. It is certainly something I have had issues with. For me it has caused repeated bouts of dyspepsia – aka indigestion – once lasting over a year, but now thankfully resolved.

With ME/CFS the probable root of the problem is our relationship with stress. As everyone who has it knows, we are negatively affected by even minor stressors, and, at the same time we are exquisitely and painfully sensitive to those very stressors. This can keep our autonomic nervous system, and therefore our entire body, flip flopping between over arousal and parasympathetic slump. During arousal the ANS redirects our bodily resources away from what it regards (in the shoprt term) as non-essential functions such as digestion. And s a short term response this is very effective: once the sabre tooth tiger has been seen off, we can shake out the trauma and get back to living – and digesting.

For us though, it’s not like that, is it? We might stay in over arousal for days – and this, of course, results in all manner of digestive issues, many of wihch we’ve already discussed, but it may also be the root of low stomach acid.

And low stomach acid means food isn’t absorbed properly: some foods become indigestible as digestive enzymes are in short supply, so we develop food intolerances. Or we may just feel like we can’t digest our food. It might sit in our stomachs for too long causing regurgitation, heartburn, burping, belching, bloating. Horrible symptoms, as I know only too well.

Even worse we might decide to change out diets after reading in blogs like mine about  upping protein and fat, only to find that our food sits like a stone in our bellies and we become constipated and uncomfortable.

I think low stomach acid and poor digestive enzyme production may also be the reason why some people find vegan or vegetarian diets easier to digest when they have ME/CFS. Becuase vegetable products are digested further along the digestive tract, by the bacteria in our intestines, a plant based or vegetarian diet will move through the stomach more quickly, so it will seem as if it is easier to digest (though only if your gut biome is in good shape).

But whatever we eat,  if we cannot digest it thoroughly, we will not absorb the vitamins and minerals we need to heal. Nor will we absorb them from supplements either.

Stomach acids and digestive enzymes aren’t there only to digest proteins and some sugars such as lactose (bile is used to digest fats) however, they are also the immune system’s front line of defense against pathogens and bacteria taken in orally.

So switching to a vegetarian or vegan diet is not a solution in itself: if this is our choice we still need to deal with our lack of acid and enzymes. It’s also worth noting that some reserach suggests (see Wheat Belly for details) that people who eat grain based diets generally don’t produce as much stomach acid as those who eat animal protein rich diets – this is another reason why switching can be difficult at first.

There is some good news though: the body can be stimulated into producing more of both and there are a few ways of going about it. Supplementing with digestive enzymes can help kickstart the digestive system again, or if that doesn’t work supplemtning with Betaine HCL with Pepsin (this is stomach acid in capsule form, together with an enzyme), though I would suggest you do this under guidance, and don’t even think about it if you have an ulcer. I used the latter and cut back a little on protein and fat, before building up again and things are a lot better now.

If that seems a bit extreme, then you could also try the ancient cure of digestive bitters – there are several different herbs used in different preparations, I have taken wormwood bitters in the past with success: you just take a few drops in a mouthful of water before eatring. As the name suggests, the taste is very bitter and it stimulates acid production.

In addition, I found being well hydrated throughout the day helped as water is an essential part of acid production. Salt is also necessary for me too – and unless you are eating lots of processed foods, you might find being liberal with the salt is helpful.

And ginger can also be used as a digestive stimulant if you want to try a natural remedy but can’t bear the bitters! Just grate a little ginger and either eat it as is about 30 minutes before meals, or steep it in hot water to make a strong tea. You could also try fermented ginger – but it has quite a kick.

And there is another thing you can do too: make sure you deal with any stressors: deal with debts* or anything else which causes nagging worry at the back of your mind. It’s vital to ensure chronic stress is not part of your life. This is not just about CFS/Me – many other illnesses are linked to stress too. So, if you aren’t already meditating, it’s worth starting because it will help in the long term. I didn’t want to include that last sentence: before I started Yoga Nidra I got thoroughly fed up with advice to meditate, but unfortunately I know it helps so I feel compelled to say it!

I do have more to say about supplements, but that must wait a couple of weeks as I’m going away on Saturday so I won’t be writing a blog post next week.

Much love to you

Sarah

*If you do have debts and live in the UK I really recommend StepChange – I found them incredibly helpful, patient and genuinely kind – I was at my worst healthwise when I spoke to them and the man who advised me was really gentle with me.

 

Stabilising Blood Sugar and Resolving Gut Issues: Part 3

This is part three of a series of posts on this topic – you can find part one here and part two here.

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Breakfast skillet, made with leftover chicken, kale, grated carrot and diced onion, with a tsp of Cajun Spice mix for a kick.

In my last post on this topic I promised to share how I eat now, so here we go:

I eat an ‘ancestral diet’ – at least, I try to! I am sticking to it strictly at the moment because of some recurring problems, but if I didn’t have those, I would be aiming for 80-90% compliance. I find if I demand perfection of myself I am almost guaranteed to fail. If I give myself some leeway, it doesn’t feel so onerous. Because it can be – onerous, that is. Preparing everything from scratch, especially when energy is low, feels like hard work sometimes.

There are many versions of an ancestral diet, but basically, if you aren’t familiar with the term, it means eating a modern interpretation of the kind of diet our pre-agricultural ancestors would have eaten. I’m deliberately being a bit vague here, because of course we don’t know exactly what they would have eaten and it would vary according to country and climate anyway.

That said we can make some good guesses and deductions based on archeological evidence – fish: we know in Britain, for example, that humans lived mainly around the coast and had diets high in fish. In fact they probably ate fish every day. This is a not something which is recommended now, of course, because we have turned our seas into polluted, plastic filled cess pools, so a diet based mostly on fish is probably not recommended. But moderate fish intake, staying lower down the food chain, is still good. This way we also avoid the fish such as cod which have been over fished for years. Sardines and mackerel are excellent fish to eat, high in Omega 3 fatty acids and Vitamins D and A.
Eggs too of course – another vital food for those of us in the Northern hemisphere then and now, as they contribute necessary Vitamin D, also iodine, and range of other nutrients as they contain everything necessary for a new life to form.
Game would have been hunted too of course, and the fatty cuts and organ meats would have been highly valued – not necessarily because people knew how nutritious they were, though I’m sure they did, but because they are rare and we seem to have an inbuilt mechanism which makes us value rarity.

And finally wild nuts and berries in season, any other fruits available, starchy tubers (the original root veg), herbs, and no doubt some leaves.

Dairy consumption did not begin until after the agricultural revolution, so many people on an ancestral diet do not consume it at all. I do however, despite the lactose intolerance. I have 24 hour yoghurt, butter and a little hard cheese occasionally. Mostly because I don’t love fish and have to push myself to eat it, so the dairy compensates for that. It also gives me another source of needed fat as unfortunately I can’t tolerate coconut products still.

I make and use ghee for high heat cooking, I also use goose fat from free range geese. If I had a source of non-industrially produced lard I would also use that, but unfortunately I can only get the industrial stuff around here, and I won’t touch if for all kinds of reasons.

Overall my diet is quite high in fats – ghee, dairy, olive oil, avocados, some nuts; high in complex carbohydrates – root veggies, leafy veg, some berries; moderate in proteins – eggs, meats, poultry, game, fish and I have no simple carbs except for the occasional indulgence in honey or squares of dark chocolate. I also include some fermented veg.

I do not touch vegetable/seed oils at all.

No grains at all at the moment, either.  No processed foods, and any condiments I make myself. It isn’t always easy, but I have learned a few tricks – cook in bulk, so there are always things in the freezer. Seek out those rare prepared foods which don’t contain things I avoid; always have plenty of eggs on hand because they are a magic food which can take on so many flavours. I eat leftovers for breakfast or lunch the following day and embrace the microwave and the slow cooker, they are my friends!

When I eat like this at least 85% of the time I don’t get any migraines at all – and I used to get two a week – my blood sugar is completely stable, and my gut issues are better. I feel better, my energy is stable – I don’t get the dips and highs that are a feautre of CFS/ME, I’m getting the nutrients I need to heal and my weight is appropriate for my height and build, even though I don’t get a lot of exercise and I went through menopause some years ago. I’m certainly heavier than I was pre-menopause, but there is an argument claiming that the natural weight gain is a way of the body compensating for the loss of oestrogen. Unfortunately I cannot find the reference for this.

So all round this way of eating suits me. I do still take a couple of supplements, and I’ll talk about those in another post, but overall I get the nutrients my body needs.

I said in part 1 of this series that I used to be vegan, and animal welfare continues to be of concern to me, as do food miles and pesticide use. I am fortunate in that I live in a food producing haven: I have a local organic farm where I can buy veg, ethically raised pork and eggs: there are no end of roadside stands selling people’s garden surplus. Livestock is raised around here and sold by local butchers, and we have several farms locally which are starting to raise their livestock for two or more years before slaughter (of course, the transport to the slaughter house and what happens there is not in any way good, I have to live with that, at the moment).

One of my local butchers specialises in locally reared meat which is from older animals. In the other direction is a chicken farm where the birds are truly free range, allowed to mature slowly and are fed by hand with supplemental feed. And there are deer everywhere in East Anglia, not to mention rabbits, pheasants, partridge, even grey squirrel – so not only can I eat very locally, it’s easy for me to see for myself how the animals are reared and know where the game I eat has come from.

And of course we can afford it – not because we have a lot of money coming in, we don’t:  but neither of us smokes, we hardly drink and have very limited social lives because we are introverts – and I lack the energy of course! Mostly though it matters to us that we know how our food was produced, and it matters enough that we will spend the money on it. I do appreciate that it isn’t possible or easy for everyone though.

It may seem odd for me to say at the end of all this that if I could be a vegan, I would – and I would, but it really doesn’t suit me. And there’s the problem of a vegan diet lacking in the vital nutrient B12, which is only naturally present in red meats some fish and shellfish. So for now at least, I eat meat and fish and avoid grains and all pulses except black beans.

I also eat most of my food cooked. I have never been a fan of cold drinks or food, except when it’s very hot, and many years ago I was advised by a Shiatsu practitioner not to eat raw or cold foods at all. I forgot that advice for a long time, but was reminded of it a while back and since then have been following it most of the time, and overall, though I can’t say there’s been a huge difference, I certainly find it easier to digest cooked food and I definitely prefer it. My main exceptions are fermented foods as, if you heat them , you lose the benefits of all those probiotic bacteria. But fermentation, just like cooking, is a way of breaking down a food partially before eating it, and I have these cold foods with something warm.

There is a lot of, quite frankly, absolute nonsense claimed by the raw food movement about the digestability of food, and the superior digestability of raw food. Cooking, it is claimed, makes food harder to digest. This is total nonsense, there’s no evidence at all to support it, and, as humans have been cooking food for approximately two million years, I think it’s safe to assume that we wouldn’t have lived this long if cooking was bad for us or made our food harder to digest in any way.

Of course it’s true that cooking does destroy some nutrients, but it also makes others more bio-available, such as the lycopene in tomatoes. So if you can digest raw foods, and like to eat cold things, then the obvious solution seems to be to eat a good mixture. That way you get the best of all worlds.

Grains are not nutrient dense when compared to meat, fish and eggs. The same is true of pulses, and both are high in starches. They also, together with nuts and seeds, all contain anti-nutrients such as phytates and enzyme inhibitors, which can bind with the minerals they do contain and prevent us from absorbing them. I also understand that they can irritate the gut. However for many people they add variety and are hard to give up even for a short time. If you want to eat them, then it’s important to prepare them properly by soaking or souring. You can read about how to do that here. Bear in mind though, that if you have migraines you might be a lot better off avoiding them completely.

And if you are interested in transitioning to the kind of diet I eat I suggest you do it slowly – a sudden change can result in an unpleasant affliction known as ‘carb flu’ which feels horrible, rather like CFS in fact. It lasts only a few days, but it’s the last thing an already sick person needs Read widely, feel free to ask me anything, though I don’t promise to know the answer, and do consult Mark Sisson’s amazing blog, which is full of valuable information and consideration of all the latest nutrition and diet related reasearch.

Some useful books:

Primal Blueprint by Mark Sisson – about the whys and wherefores of ancestral eating

My Migraine Miracle by Josh Turknett – ancestral eating for migraineurs

Good Calories Bad Calories by Gary Taubes – why fat doesn’t make you fat, but carbs do

Wheat Belly by Dr. William Davis – why we are getting fatter and sicker and what to do about it

Grain Brain by Dr. Perlmutter – how grains may be linked to Alzheimers and why

And you don’t need me to tell you seraching any of these titles will take you to the author’s website!

 

Love and healing,

Sarah

 

 

Stabilising Blood Sugar and Resolving Gut Issues – Part 2

Hello again, this is Part Two of my article looking at dealing with the unstable blood sugar and gut issues which are frequently an integral part of ME/CFS. You can find Part One here which looks at stabilising blood sugar. In this post I’m looking at the specific digestive issues which can occur with ME/CFS and in part three and four I’ll be looking in more detail at what steps I took and the dietry guidelines I now follow to help me stay well.

Disclaimer: Everything I say here is of course based on my experience, but I’m not a medical professional and these blog posts should not be construed as medical advice.

I don’t know about you but I was given very little information about either of these issues when I was diagnosed, despite the fact that my appointment was at one of the best ME clinics in the country. They seemed to assume I knew that digestive problems and food intolerances were a major part of the illness – but I didn’t! And at that point  I had only a longstanding intolerance to lactose (since childhood, nothing to do with the illness at all) and had formerly been diagnosed with IBS -which turned out to be related to the lactose intolerance, so I was very confused when the consultant started telling me I should be eating more dairy because I would make my problems worse by avoiding it!

And unfortunately I was so overwhelmed by the entire experience I was unable to explain my past history to her. However, since I think Western medical professionals know batshit about the causes of most digestive issues, and nothing at all about eating in a way which supports real health, I didn’t pay much attention to that part of the session.

Even if I didn’t have too many gut issues back then, I certainly developed them – helped along by a series of courses of anitbiotics in 2010/2011 for sinus issues which turned out to be migraines. So. My gut bacteria were devastated, though I knew nothing of such things back then, and since then I’ve had no end of problems. Fingers crossed though, I seem to be okay now. Unfortunately, healing the illness can only resolve all of the gut problems if your gut bacteria are happy and healthy, so I still have work to do in this area.

Over the past few years though I have experienced:
A worsened intolerance to lactose – but oddly that has reversed and is now actually better than in childhood. I can drink a latte no problem, now.
Intolerance to all things coconut – one day I could eat coconut, the next it caused horrible stomach cramps
Wheat
Maple Syrup (?!)
Sweet Potatoes – I still have this, unfortunately

And of course the horribly painful consequences of food intolerance – alternating diarrhea and constipation, flatulence, and cramps which, once you have them, seem to get triggered by all kinds of things which are normally okay.

To round these digestive horrors off I also developed an inability to digest starches and suffered over a year of slow motility/constipation before finding out what the issue was. I have to say that was incredibly miserable at times. I even had an impacted stool at one point, which is something I wouldn’t wish on anyone. If you too have been suffering with slow motility/constipation OR chronic diarrhea I highly reccomend you have a look at the Specific Carbohydrate Diet – it was finding this diet which both enabled me to find out what the issue was: inability to digest certain starches – and resolve the constipation and slow motility. My gut function was actually restored very quickly and I can now eat white potatoes at least!

There’s a good chance if you have ME/CFS that you have developed at least one food intolerance, or are just experiencing some unexplained gut issues. Unfortunately if you don’t know you have a food intolerance, and regularly consume that product you will find that it doesn’t seem as if your symptoms are connected to any one food. This is because if you are intolerant to say, lactose, and you have milk in your tea, you are keeping your digestive system in a mild state of chronic distress. So any food can potentially trigger symptoms. I actually think this is how IBS gets diagnosed – it’s caused by food intolerance/s but because the person is regularly consuming the food they are intolerant too, their digestive system is in a state of chronic distress and reacts to all sorts of foods -so it looks as if the problem is something else. The Doctor says it’s IBS, gives you some tablets (which ironically often contain gut irritants) to ease the cramps and tells you to eat more fibre and reduce your stress.

My belief is s/he should be guiding you through the process of discovering what you are intolerant to, and helping you restore balance in your gut microbiome – and this is also what you need to do with ME/CFS. Actually discovering your food intolerances is fairly straightforward because the most common ones in CFS/ME are:

Wheat and/or gluten
Lactose in Dairy products
Starches as above
And Eggs can be an issue, but this is much more rare.

So to find out if dairy or gluten/wheat is an issue, just stop eating them for a week and see how you feel. It’s best to eliminate all gluten grains initially: in my next post I’ll talk about why I don’t  eat any grains regularly, but let’s make this doable – you can still eat white rice (but not brown) and gluten free oats if you want, and feel you can’t cope without any grains.

At the end of the week try a little of ONE thing only: e.g put some butter on a potato (most lactose intolerant people can actually eat butter and hard cheeses without issue), the next day add a little cheese, then the next day add in some yoghurt and so on. Take it slowly, and if you get any symptoms stop. Take 24 hours off – or until symptoms subside – then go back to where you were before the symptoms started and see how you go at that level for a few days. Yes it’s a slow process, but it’s the only way to find out exactly what you can and cannot tolerate – unless you want to try food sensitivity testing. Note here too, I’m talking about intolerances. If you have a food allergy you probably already know about it and have an epipen. Allergies are life threatening, food intolerances are not.

If you find that after a week on this elimination diet your gut issues haven’t improved at all then you might have the starch problem I described above, or you might have one or more other intolerances. In that case I would suggest you consider consulting a reputable professional with experience in this area, who can guide you through the process of finding out what the problem is.  Alternatively, you could try a few days on the introductory stage of the Specific Carbohydrate Diet. It’s very dull, but it won’t do you any harm as it’s extremely nutritious and gentle on an inflamed digestive system.

And that about wraps it up for this post – I’ll be back soon with some more detail about how I changed my diet and what I eat now, very soon.

Love and Healing

Sarah