ME/CFS: The Things That We Don’t Seem To Talk About

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Holes, Sarah Fincham 2007ish, ink on paper. Apparently I like drawing holes, how strange.

How irritable are you? Are you short-tempered too? Maybe you find it takes you so much longer to calm down after getting angry, and you have a symptoms flare that lasts for days or even weeks afterwards.

Do you even, dare I ask it, occasionally resent the care or help you recieve or the people who give it?

I’m holding my hand up here.

Yoga Nidra has helped me hugely (yes, I know I mention it in every other post, but it’s helped me so much). So has dealing with the stress and trauma which preceded the development of my symptoms, but still: I am more irritable and bad-tempered than I used to be.

This is not uncommon with any chronic health issue, but it tends to be particularly problematic with ME/CFS because of the illness’s relationship with stress and anxiety – both of which cause increased irritability. Add into the mix PTSD and the fact that I have always had a quick, sharp temper, and I’ve spent more time hitting out over the last 16 years or so, than I care to admit.

And of course it’s the people closest to us who are on the receiving end. They are there for one thing, but for me too, there’s another issue: I get sick of feeling grateful so often, of always (it seems) having to say thank you.

This no doubt connects back to what I talked about last time, and my difficulties with accepting my physical vulnerability. I want to be independent, not dependent, doing, not receiving – to be an equal partner, not feel I am somehow simultaneously having to take responsibility for things I don’t want, and not getting to actually do what I do want to do.

Sometimes, it can be very hard. And then frustration builds up and I go from zero to explosion in a moment. Then I get to feel really ashamed, afterwards too. Both because I lost my temper in the first place, and because of the fact that the person I have shouted at, whilst obviously equally flawed, also makes my life easier in many ways.

This is not something I have really noticed being discussed much, but I personally think we’d all feel a bit better if we knew we weren’t the only one – I certainly would.

Being a human can be pretty challenging. Being a human with a chronic condition is doubly so.

love,

Sarah

 

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We Cannot Relax Unless We Feel Safe

 

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Portrait drawn with my non-dom hand, Sarah Fincham, pastel on paper, 2013ish

Stated boldly like that, it seems self-evident, doesn’t it? And yet. For me, at least, it was a long time before I really got this – and I think people in general, in the West at least, tend to just assume everyone is safe these days, so all we need to do if we are tense or stressed is ‘just relax’. How often have you been told just that? For me, well I’ve lost count.

 

Relax!

Don’t Worry!

Chill!

Impossible. The problem is not relaxation, or the lack of it, the problem is (often, but not always) not feeling safe.

Do you feel safe all the time? For many of us with CFS we don’t: is that cause or consequence? Maybe both? Sometimes this feeling is completely out of awareness, but body language can give it away – for some of us it’s reflected in a tendency to ‘cage’ the stomach area: we round our shoulders inwards, and lean forwards a little. Others, like me, hide our vulnerability: I walk tall, stride about, look for all the world like I’m totally confident. Look again and you might see something else on my face, but I learned early to hide vulnerability if I could.

I’m working on feeling safer and have been for a while now. Ironically, whilst I feel safe in my present, and am no longer hyperaware all.the.time. if I’m not careful I can start to feel very unsafe when I consider the future. One of the downsides about being interested in and concerned about the future of this planet we live on, and the impact we are having, is that there’s so.much.to.think.about.

I can get into all kinds of disaster scenarios in my head if I’m not careful, most of which revolve around some kind of major environmental disaster, food and resource shortages, and me being old and alone and yes – vulnerable. Of course I know these are not real, but I am someone who likes to have a plan in place, or at least a strategy.

I like to be prepared.

I think somehow, writing that, that I really need to come to terms with the reality of my vulnerability. I mean I am vulnerable – we all are, but I’m not helpless, not at all.

One of the ways I tend to respond to these realisations of my own vulnerability is to consider going to Bushcraft Camps to learn survival skills – and I may do that one day, as it does interest me, genuinely – but I think too, I am just trying to plaster over the vulnerability leakage. At some level I feel I can prepare for any eventuality – I’ve even considered archery, at times! I’m already a good shot, so that’s okay – well, apart from the lack of a gun, of course. Don’t be concerned, I’m thinking hunting here.

In reality of course, whatever scenarios I prepare for, will not be the one that develops

The think I find most odd about this, is I’m not so scared by emotional vulnerability. I used to be, but after therapy, and even menopause, I’m not so much, as you might guess by what I write here. No, it’s physical vulnerability which scares me. When I was younger, I used to say my biggest fear was being helpless and utterly dependant on someone else to look after me. That’s certainly still a fear, but environmental collapse has definitely surpassed it: or environmental collapse plus being ill and dependent – that’s definitely my worst case scenario.

I really do need to find a way to accept my physical vulnerability and be okay with it, but I have no idea how. I wonder too if perhaps this inability to accept it and be okay with it, is somehow linked to the nature of the Imagery I wrote about last time? That’s an interesting thought, and maybe something to ponder. And whilst I do, I know it’s certainly the reason I still sometimes find myself unable to fully relax.

How do you cope with the fact of your physical vulnerability? Do you feel safe in the world?

 

Losing and Finding Meaning, Purpose and a Sense of Identity

‘Having a sense of Meaning & Puropse allows us to cope with suffering and keep going when life becomes difficult and stressful. We meet the need for Meaning and Purpose by being stretched mentally and physically in one or more of three ways:

  • Learning new mental or physical skills
  • Helping others through commitment to raising a family, working in a team, running a business or volunteering; and
  • Having a sense that we are connected to something larger than ourselves, which we have a duty to serve. This might be met through commitment to a religious, political, or social cause, but for some people it may take the form of a philosophical or spiritual quest for scientific or experiential truth.’

                                                                                                    Extract from handout, Suffolk PCN

Having lost my sense of both meaning and purpose recently, this is something I’ve been thinking about even more than usual. I say even more because growing up as I did in a family completely divided about religion, and abusive to boot, I had little sense of meaning really, even as a teenager and the overriding message I got from my childhood was that life was about ‘getting through’, ‘coping’ and surviving. I was also firmly given the message that I would manage none of those things without my family, that I ‘needed’ them to cope.

At one level that last statement was true – it’s true for all of us that we need connection and support. Having spent a few years with no connections at all I will vouch for just how important this is, but that wasn’t the way my mother and stepfather meant it: they meant I wasn’t capable of managing an adult life without their help.

I read a lot of Satre during my teenage years, and tried to apply existentialism to my life, but I was probably too emotionally troubled to do so with any success. However it led me to psychology and I read my way through everything my local library had to offer. I didn’t find answers to why I felt so unhappy and confused, but my desire to understand what motivates behaviour and why we are as we are was fuelled. This purpose, plus an incredibly supportive boyfriend was the reason I finally left home and managed to find a place at a University to study Social Sciences.

Since that time I have always derived my sense of meaning (not to mention my identity) from what I do. I have had brief explorations of different spiritual perspectives and have had some interesting experiences, but nothing has ever stuck. This is all well and good when we are fit and well but what happens when we aren’t?

Because I developed ME/CFS slowly I held onto my purpose (understanding why we do what we do, mostly expressed through reading and writing) initially. This also gave me identity and meaning, too. At the same time I had rediscovered drawing, and that too gave me purpose and identity. And as long time readers will know, eventually I started painting, and selling paintings and art gave me everything.

And then that voice inside me started saying she didn’t want to paint anymore. And I got sicker. And she got louder. And there I was housebound with ME/CFS, not painting, not writing, doing very little reading because I couldn’t and no sense of purpose, meaning or identity at all.

Ack. That was a dark time. And it has been intermittently so ever since. I have scrabbled around, trying to find something to fill the void for the last few years. For a while I did manage to hold onto a spiritual perspective, but as I wrote last week I have been divided about this for my entire life: I am a natural skeptic who cannot simply ‘accept’ and believe, and have always been self referential*, I  suspect that period would have come to an end sooner or later, anyway.

Some would say of course, that locating my identity in what I do was always a bad move – I need to find my identity in myself. The problem with that is that I have a drive to achieve things – I’m not talking about being ambitious, I don’t mean recognised achievements at all, I mean simply that achieving things I want to do during my day makes me feel good. I love ticking things off lists and I love admiring my results. Here’s an example: yesterday I made a toile for a top I want to make – it was really simple – but I had made some changes in the design so I was delighted when it came out well. I didn’t need anyone else to admire it (though I’ve no doubt I will share the finished item), but every time I think about how well it came out I feel a sense of pleasure and satisfaction. I feel this way when I get less pleasurable things done too – it’s a great motivator.

I think given that, it’s no wonder my identity is tied up with what I do, and I feel lost when I can’t do much. My biggest challenges with ME/CFS has been readjusting my expectations about what I can realistically achieve, so I can get my dose of satisfaction each day without wearing myself out, and finding new ways of creating meaning and purpose.

Hold on a minute Sarah – didn’t you say you found purpose in your desire to know what motivates us? Have you lost that?

Yes – or at least, I got to a point where I knew as much as I wanted to know, where I was sick of looking into myself, sick of analysing myself and others and simultaneously came to the conclusion that far more of what and who we are is driven by biology than I had ever previously believed. menopause was actually part of this – once through it, you tend to realise how hormone driven you were when you were younger. It can be an eye-opener. But it coincided with my loss of meaning, my loss of artistic purpose and, as I wrote last week, the result was the black pit.

The last few weeks though have seen me get obsessed by nutrition (actually this has been an ongoing minor interest for a few years), and commit to blogging – which is giving me purpose. My sense of meaning is still pretty shaky – I hope the Peer Support Network will help with that, and I do have my environmental values of course, though they are something of a double-edged sword as limited energy means I simply can’t do as much as I wish in that regard, and I find the internet doesn’t help by throwing prophecies of environmental doom at me all the time. So I do my best, and try to ignore the rest. And I derive enormous comfort from feeling, as I always have, deeply connected to this beautiful planet of ours.

I’m getting there, I guess.

How about you? How do you create meaning and purpose? How has it changed since getting ill? And if you’d like to share, where do you locate your sense of identity?

*In Psychotherapy this means if I encounter a statement about ‘the way things are’, or the world, or pretty much anything really, I tend to go inward and consider whether that has been my experience. There have been points when I’ve suppressed this, but I can never do so for very long, and always tend to have questions lurking.

 

 

Intrusive Imagery

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And Came The Horses, Sarah Fincham, 2013 – Charcoal sketch which has nothing to do with the post at all.

In my post a while back, Why do CFS Sufferers’ Get Cognitive Symptoms, I mentioned Intrusive Imagery. In a brief exchange Pia said she was interested in reading more about this, especially whether we meant the same thing by it. That’s a very good point! All too often we can mean completely different things using the same words so I thought I would blog about it – from my experience of course.

Intrusive Imagery is  linked to Trauma and PTSD, Anxiety Disorders and Obsessive Compulsive Disorders.

How does it manifest? Well, for me, whenever I go to use my blender, in my mind I see myself put my hand in the blender when it’s switched on. Usually I stop it before I get to the gory part*, thankfully. Or I have arachnophobia, so I might lie down to meditate (I do Yoga Nidra) and images of spiders running over me, particularly my face and mouth, will crowd into my mind.

I’m a passenger in a car and I see car accidents, or I see machinery and then my hand or leg is plunging into it. You are probably getting the idea. It’s not pleasant and I can remember experiencing this kind of imagery back when I was 17, but that memory doesn’t seem like the first time it happened.

Some people see themselves injuring or killing others, which of course they find personally horrifying – wouldn’t we all? I don’t think that has ever happened with me, and I’m grateful. For those it does happen to, the way of coping is usually to engage in some kind of ritual act or repetitive behaviour. For me, the image itself is kind of a ritual as it puts me on high alert: If I imagine the horrors of putting my hand in the blender, then of course I will be extra careful whilst I use it. And it’s the same with imagining car accidents and machinery etc.

With the spiders it’s the same thing again: as I’m often meditating when it happens or trying to sleep so I am shutting my eyes and relaxing, and the part of my brain that wants me to stay on high alert is trying to stop me. Just like any other ritual, it’s supposed to stop something happening. These particular images are also grounded in reality for me. When I was a toddler still in nappies I was outside and felt something on my thigh – it was one of those fucking enormous spiders crawling up me. Several years later, I put my light on to drink some water one night and that was a spider floating in it. Ugh. I screamed and my father came in, laughed at me then pretended to drink it. Thus a phobia was born and reinforced, and to this day I cover glasses of water and check before I drink.

Prior to developing ME/CFS I would only experience major problems with II when I was depressed, but after I became ill I found it got significantly worse. I deal with it by saying No, or Stop It, firmly to myself. Or I distract myself by thinking of something else and I make sure to breathe deeply to calm my system. This is why I found Yoga Nidra so much better as form of meditation than other techniques: it has an inbuilt distraction in that you are required to follow instructions.

I’m interested to know if any of you have experienced this, or something similar? How did it manifest? Or is you have bad anxiety issues what do you do to cope?

Love

Sarah

*Interestingly since I’ve started drinking a smoothie with my breakfast most mornings and am therefore using the blender everyday when I’m sleepy, the imagery has lessened – maybe even my brain can’t manage to scare me first thing!

The Real Reasons I Haven’t Been Around Much

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The Strange Holes Appeared Overnight, Sarah Fincham 2013, pencil on paper, Gifted. Not the illustration I was looking for, but it seems apposite, nonetheless.

Last week I made two promises to myself: One was to start blogging again for some very specific reasons, and the other was to talk about what has kept me away from the blog and also Instagram.

This can all be summed up in three words: Depression and Anxiety. Together they sapped my motivation and drove me more and more into hiding. I have been functioning all the way through, I am not talking about deep depression here, just the ordinary ‘everyday’ variety where I can be lifted out of it temporarily, even enjoy myself for a while – I went on holiday and was mostly okay – but left to my own devices I have mostly hidden in Netflixland or books.

There was a definite trigger – I have written before about discovering Carol Tuttle’s work and finding it fascinating. That was true. However it also made me question my spiritual beliefs, such as they are, and find that the only conclusion I could come to was that there is no spiritual dimension to life at all: it is all just biology (and physics, chemistry etc). This is not what Tuttle believes, btw, she’s actually a Mormon and believes it’s God’s work.

But I am not Christian, or anything else. I was brought up with a mother who had an unquestioning childlike belief that there was a God, and a Father who was an Agnostic and it was his opinion which dominated – he refused to marry in Church and refused to allow me to be Christened in Church although my Mother would have liked both. That divide has actually played out in my own Psyche through out my life and usually the rational had won out, but more recently I had chosen to believe in a spiritual dimension as much as anything for my own psychological health (most psychotherapeutic models agree some sense of belonging to something bigger is essential to mental health). Exposure to Carol Tuttle’s model put paid to that though – and I am mystified as to how so many people involved in it can sustain their faith in the face of it actually, but then they all come from generations of Mormons and are actively involved in faith-based activities, which no doubt help to bolster their belief.

For me it was a deep blow however: I completely lost my already fragile sense of meaning. My husband, as an aside, is also like me. He sometimes believes, sometimes doesn’t: both of us (separately) toyed with Christianity in the past, I have explored Buddhism and New Agey stuff, and both of us ended up broadly speaking in the Pagan arena. For Dave that includes Deities, for me it doesn’t and I took a more Pantheistic view. As usual I’m digressing though – the main point is, neither of us is involved in a formal religion which might have helped sustain me.

Simultaneously of course my sense of purpose has been missing for a long time – I’ve tried to paint but I just don’t feel it at all. The ‘little voice’ inside me stated that she didn’t want to paint a long time ago, four years ago in fact,  but I have at different times tried to push it – and it has resulted in some paintings, but all too often they don’t feel right. I wanted to make myself paint though, because without art I have no purpose – and my identity feels shaken to my core. If I’m not a painter, who the hell am ? (just as an aside please don’t offer me reassurances, or advice – I’m not seeking help here and you know only the very basic stuff that I’m sharing here, not the whole story by any means).

So that was the background – first a loss of purpose, then meaning, and finally the hat trick if you will. When I first ‘typed’ myself according to Tuttle’s profiling system I thought I was a Type 4 – it was certainly the Type I related to most. But then, a couple of weeks later I thought no, I’m a 2. So I spent time in that group, but after a while I thought no, I really have this wrong, my first hit was right – so I joined the Type 4 group. And something major happened: it was incredibly triggering for me. I was flung right back into my childhood feelings of not being good enough, over and over, and feeling like I didn’t fit in despite the fact that I related so strongly to so much of what was talked about there. Unfortunately this was all triggering huge amounts of shame and anxiety and after having the realisation that actually this was how I felt all the time as a child and that it was of course the reason why I hated myself so profoundly and always wanted to be someone else, I decided that I needed to back off from the group for a while and see what happened. By that time I was already feeling my mood sink, but I hoped moving back from the triggers and working on the feelings would help me to work out if I was feeling like this because I had found my ‘truth’ – i.e. the real me, or because aspects of T4 behaviour were triggering for me.

Months later and I still don’t know. But as I am no longer involved in DYT for a number of reasons, most of which have nothing to do with these issues, that doesn’t matter so much. What does is that for a long time I just didn’t want to deal with the feelings at all, and to date I haven’t really. I anticipate that changing though as I began taking St John’s Wort again a few weeks ago and am now starting to feel my mood lift, and a return of motivation. That, of course, is why I have been able to blog again and why I have decided to blog regularly to give me a sense of much needed purpose.

Regaining or finding a sense of meaning is a little more tricky, but I am hoping that the Co-Counselling training I’m taking in a few weeks and the following membership of my local Peer Support Network will supply at least some of that as it will connect me to my local community – something I have lacked for years due to the limitations of CFS plus my awkward and challenging location – and give me a feeling of contributing to something larger.

I have also discovered this site and am interested in what they have to say so who knows, perhaps I’ll adopt a slightly different form of Pantheism as my ‘spiritual’ framework. It certainly accords with my other values.

Perhaps, too, the return of interest in things is the most positive sign of all. I have been reading a lot about the microbiome and the connection between it and mood amongst other things, and having a few rants about the appalling nutritional misinformation to be found on the internet. No doubt these interests will make their way onto the blog.

And in the meantime I’ve committed personally to blogging twice a week so I’m compiling a list of potential blog posts. If there’s anything you are interested in reading about in connection with CFS, or mental health then please mention it in a comment. I’m not promising to write about it, but if it piques my interest I will certainly consider it!

That’s all for now, I’m aiming to blog again on Thursday.

Love,

Sarah

Thoughts on The Ketogenic Diet and ME/CFS

Below I talk about some women needing more carbs than men, and after a conversation elsewhere where someone assumed because I said that, I must be in the ‘high fat is bad, high carb is good camp’, I just want to clarify what I mean. I’m talking about carbs from starchy vegetables and fruit, neither of which are technically ‘allowed’ on the Ketogenic diet. I am not saying we need a high carb diet, just that some women need more carbs than 20g a day – and I am one of them. For some of us, moderation in all food groups is best.

As I mentioned in my last post (when was that again???) at the beginning of this year I decided to try a Ketogenic diet for two reasons: I was trying to lose weight and had stalled and Dr Myhill recommends what she calls ‘Paleo Keto’ (i.e. dairy free) for people with ME/CFS. I had also come across stories of people healing all manner of ills on it, so I was willing to give it a try.

I will be upfront here – I have reservations about Dr Myhill’s approach – she doesn’t seem to have any grasp of the gut microbiome (at least, that’s the impression I got from her book, I may be wrong) and what happens to it if your take antibiotics, for one, and secondly she does not give proper advice for people embarking on a Ketogenic diet – for example she doesn’t mention the possible negatives to look out for. And try as I might I have never found anyone on the internet who has recovered using her approach. I can find people who report improvements, but as we all know, ME/CFS is a fluctuating condition and we have no way of knowing if these people would have felt better anyway*. It may of course be that people who have recovered are far too busy living their lives to be talking about their recovery on the internet – in which case I wish them well. In the meantime if you can point me to any recovery stories, please do so.

Okay, so being the kind of person I am I did a lot of research before I started Keto, which was a good thing because the first thing I learnt was that electrolyte supplementation is crucial on the diet – and as those of us with ME are already likely to have an electrolyte imbalance this is crucial information for us, and Dr Myhill doesn’t mention it. In case you don’t know, electrolytes are sodium, magnesium and potassium and you need to consume a lot on a keto diet, with the exception of potassium which you need to get right, as too much is as bad as not enough.

I also learnt that even though my diet was fairly low in carbs, it’s good to gradually reduce carbs over a week or much longer if your diet is carb heavy, and that all the research that has ever been done on Keto (and that is not very much!) has ONLY BEEN DONE ON MEN. Now this is very important because women have a completely different hormonal profile to men (it’s what makes us women, for one thing!), and carbs are necessary to hormone production. If our bodies don’t get enough of what they need, during the reproductive years, they simply shut down reproduction – otherwise known as Amenorrhea. Now this isn’t a reason not to try Keto, and some women do exceptionally well on a very low carb intake – but some need regular ‘Carb-Ups’ to stay healthy on the diet.

So armed (as I thought) with this additional knowledge I embarked on my Keto journey. I did not restrict my carbs too heavily at first, actually, and did not track my macros. All was well for the first ten days or so. I lost weight, I had moments of profound wellbeing – not as many as others were reporting – but some, nonetheless. I consumed electrolytes even though salty water is hardly my favourite thing and I was actually really enjoying my meals. But then I started to feel tired. And when I say tired I mean it was like walking through treacle. It was a different feeling to the usual ME tired. In fact I should have recognised it as I have felt it before, but unfortunately I didn’t. And my reasearch hadn’t covered this. People told me to up my electrolytes so I did. All that happened was my heart seemed extra loud when I lay down in bed at night.

I started to gain weight too. People told me I should track and be strict about carbs. I did. It got worse.

It got worse because my thyroid was struggling – we need carbs to make thyroid hormone, apparently, and for some women this is what happens when we reduce carbs too low: we start to develop hypothyroidism. And many in conventional Keto groups absolutely deny this happens, however it is a known medical fact that Keto can cause Hypothyroidism and children who are put on Keto to manage Epilepsy frequently develop Hypothyroidism as they get older. They have to be carefully monitored for this reason. I’ve had drug induced Hypothyroidism before and trust me, its a horrible feeling!

Fortunately I found Leanne Vogel’s work realised what the problem was and started upping my carbs. I started following her approach – which appealed to me a lot, however although I began to feel far far better really quite quickly I was still gaining weight.

I also discovered the other thing I wish I had found out before starting Keto: it is absolutely NOT recommended for Adrenal Fatigue sufferers – if you don’t know what Adrenal Fatigue is, it’s a controversial, medically unrecgonised syndrome that’s almost identical to ME/CFS (I personally believe it’s the same thing as ME/CFS and/or Fibromyalgia), and the reason it’s not recommended is because if you have Adrenal Fatigue your Thyroid is also affected and it is thought you would have a higher risk of developing, yes, you guessed right: Hypothyroidism. And of course if your diagnosis is ME/CFS you likewise may have a weakened endocrine system. I certainly do.

I’d first like to reassure you that I am not saying don’t do it at all (who am I to say that??) – like I said, for some it works and I did encounter a couple of fellow ME/CFS sufferers who seemed to be doing okay or very well with it. But please, make sure you are fully informed and if your skin and hair start to get dry, or you don’t feel well in any way even though you are being diligent about electrolytes, you start to feel very cold, or like you are walking through treacle and your body is slowing down even more than normal, just stop it. Increase your carbs and see if it helps.

Educate yourself thoroughly – there’s information out there – and whatever you do, if you are a woman do not take your advice from men: in my experience the dominant narrative  in support groups is that low carb is great for everyone and women’s needs are not different and hypothyroidism only occurs because people eat seed oils and the research was done on people eating seed oils – in fact the original reasearch was done in the early 20thC so that claim is utter rubbish – we didn’t start consuming seed oils until the second half of the 20thC. There is also, in my experience, a tendency to pin everything on electrolytes and even not believe people when they say they are supplementing adequately.

This all sounds rather dark, and there’s no doubt my experience was the opposite of positive but it really does work for some people, so if there are any readers who’ve had positive experiences as women with a Keto diet please leave a comment below: How did you make Keto work for you? Has it helped with symptoms?

See you next time,

Sarah

*That is also true for everything I say on this blog of course! At the end of the day everything is anecdotal here.

A big hello, and some interesting research with implications for diet

So it’s been two months and I feel the need to give a quick catch up! So I more or less recovered from my virus and then I started a Ketogenic diet. And what an utter disaster that was 🙄 I tried it for two reasons: Dr Myhill recommends it, and I have been trying to lose weight since the beginning of November, but I stalled. I’m no longer technically overweight, but I’m not quite at my happy place so I hoped to help the CFS and lose at the same time. Neither hope was realised, my body did not respond well and I actually gained weight. So I’ve had to recover from that, and then two days ago I started with another virus. (I’ll come back to the Ketogenic diet in a future post because I have quite a lot to say about both the diet and Dr Myhill’s advice).

Sometimes life just isn’t fair! However I’m feeling a bit better today, despite signs that I’m going to develop a really nasty chesty cough, and I just read something I really wanted to share.

I have mentioned before that if I could I would be a vegan, but it doesn’t suit me – and in fact doesn’t suit a lot of people with CFS, and today I learned there may well be a genetic reason for that. Click this link and read Mark Sissons excellent post about genetic heritage and conversion of plant based Omega 3s into the fatty acids the body can use – it’s nothing like as technical as I’ve made it sound, I promise. And then come back.

Got it? Excellent – so what do you know about your heritage? I don’t know too much about mine, but I do know around half of my ancestors came from Scandinavia so that suggests I may not be a great converter and that may be why I did not do well as a vegan, even when I was healthy.

I have no idea if I’d do better if my diet included more fish, I’m not a great fan really, but I do eat quite a lot of eggs and I aim for fish twice a week. Maybe I should try and develop a taste for it, and see if it helps me. I also take krill oil.

How about you – do you eat plenty of fish and eggs? What’s your ancestry? And have you tried a vegan diet ever?

What Happens When You Get a Virus on Top of ME/CFS?

Some odd things happen with ME/CFS – some people get one thing after another, and are particularly prone to bacterial infections. Others (and I used to be one of these) will say they haven’t had any other illness since developing ME. Considering I have now had the illness for 12+ years, its clear I must have been in contact with people carrying colds and flu, so what’s going on?

Do we get colds, but our suppressed immune systems simply don’t respond? Or is it that our immune systems are alway ‘on’ so no virus has a chance to get a hold? And why does the opposite often happen with bacterial infections?

I can’t answer all these questions, but I think the immune system involvement seems under considered, certainly here in the U.K. Treatments, such as they are, tend to be focused on Fatigue – we aren’t even entitled to a flu jab each year. For us, it all depends on how our individual GP sees and understands ME. If they don’t see it as a real illness and aren’t aware we have compromised immune systems, then the chances of getting a shot, should you want one, are slim.

Yet for some of us – and again, I am one of this group – my immune system involvement is actually my primary symptom set. For me Fatigue is certainly a big part of the illness, but it comes as a result of ignoring all of the other symptoms. Early on, before I had even considered I might have ME I would frequently feel like I was going to get the flu. Feeling so ill, I would take to my bed, only to find that all my symptoms had disappeared the next morning. For a long time I thought I was lucky I could fight things off so easily – until it started happening more and more often, of course!

But the nature of my illness has changed over the last couple of years. Firstly, I now get colds – exactly as I used to, streaming eyes and nose, coughing and sneezing. And this is a good sign, it means I really have improved – my immune system is responding g as it should. But secondly, now, Fatigue IS my main symptom.

And after getting a cold, it seems to take two to three months to actually get over it and during that time I am exhausted. I have Fatigue now, in a way I didn’t, often, before. I lacked energy, but that is a different feeling altogether.

I wrote in my last post about resting since my cold at the beginning of December and unfortunately I am still having to. As yet I’m not able to drive, need actual naps as well as rests during the day, and very limited physical activity – though fortunately I can handle more mental activity.

Past experience says that my recuperation period will be around three months, however I have felt a little better the last few days, so fingers crossed. Perhaps I will only need two months to recover this time! I’ve also changed my diet in the last week or so and I’m interested to see if that helps me – more about that next time.

I’m curious to know what your experiences are with other illnesses? Do you succumb to one thing after another? Or can’t you remember the last time you had a cold?

Time to Rest

This year I’m taking my cue from nature and taking time to really rest. Of course, I rest all the time, interspersing activities with rest, and taking time each weekend to rest for longer, but it’s rare I take an extended rest until I’m forced to.

In some respects this rest isn’t entirely voluntary either: I caught a cold a few weeks ago and, as always, it has knocked me out. So I’ve already had to cut back considerably. But, instead of resenting, that I’m trying to embrace it. Winter is the season for burrowing down, turning inward, rest and renewal. So as from today, the Winter Solstice, I’m embracing rest for two weeks.

We always have a quiet Christmas – there are no people within a 2k radius and we have only loose plans, so there won’t be any external demands. Instead there will be resting and reading, a little knitting and no blogging – in fact part of my rest is cutting back hugely on internet time – so this is my last post until 2018.

Whatever you celebrate – if you celebrate- at this time of year, I hope it is all you wish for!

Love

Sarah

Ever Wanted To Run Away to The Woods?

glowing

Dan Neuffer, author of CFS Unravelled says it’s actually common for sufferers of ME/CFS to want to go and live like a hermit in the woods. I don’t know how true this is generally but it’s certainly true for me. I’m never happier than on my own amongst the trees – especially on a frosty bright autumn day. I would love to live amongst trees, but I haven’t found a way yet.

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So I indulge this love as often as I have the energy by visiting local woodlands. Even without knowledge of the Japanese research which shows ‘Forest Bathing’ is highly beneficial to the human immune system, I know that being amongst the trees is good for my health.

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It turns out that access to a forest is directly beneficial to the part of the brain called the  amygdala as well. That means it’s also extremely good for stress, and for normalising the stress response – something people with ME/CFS definitely need. According to a new study from the  Max Planck Institute, people who live near forests have physiologically healthier amygdala structures than those who don’t.

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As my husband would tell you, I have been saying for years that we have created human environments which are as detrimental to us as they are to the natural environment and the other creatures which live in it.

Seems I’m right.

It also seems that people with ME/CFS may also have very good instincts about what we need for our own healing too. The environment we live in can shape our brain structure and function so if you, like me, believe this is a Neurological disease, then ensuring we are in an environment that supports our health is a fundamental step toward better health. We may not be able to actually live in the woods, but spending as much time as we can amongst the trees, walking and sitting and simply being, is definitely worth our consideration.

love

Sarah