Now For some Official Time Out

At least I can still sketch, even with my wrists splinted! Inktense pencils in sketchbook, Sarah Fincham 2018

Some of you (there are only a few of you of course 😁) May remember my Trigger Thumb. Turns out there was an underlying cause – Carpal Tunnel Syndrome – and not only in my right wrist.

No, I have it in both, unfortunately. At the moment I’m not in pain, which has a lot to with why I failed to register the problems – symptoms, apart from the thumb, were minor and intermittent, and as I wasn’t getting actual pain, not obvious. Then they suddenly got a bit worse and it did become obvious what the problems were.

Damn. I’m now splinted up much of the time, and as I’m not supposed to do repetitive tasks I’ve decided to take some time out from blogging. I will do pretty much anything to avoid surgery – especially as I have the nasty feeling this was self inflicted by failing to protect my wrists properly when doing yoga 😩.

I don’t have *Diabetes and I think my Thyroid is behaving itself, so this seems the most likely explanation.

As typing does irritate it, I’m going to take a break from posting here for a while. I’ll be hanging out on Instagram though – I’m @sarahlivesinsuffolk so please come and find me if you have an account there.

Otherwise, I’ll see you sometime!

*Trigger Thumb and Carpal Tunnel Syndrome are linked to Diabetes and Hypothyroidism, but equally Yoga can cause it too, as can poor posture and several other things.

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Heat, Humidity and Morning Sluggishness

Random photo from my archives – it’s of the ruins of a church called St Mary’s near East Somerton in The Broads area

Hello, I disappeared for a little while there! The heat and humidity are really getting to me now – I always find August is hard work and this summer is particularly bad. My usual extreme morning sluggishness (very common amongst people with ME/CFS) seems to last into the afternoon, only really letting up as the weather cools down. Consequently I feel somewhat overwhelmed by things and I know the only real cure for overwhelm is rest – even though rest is the hardest thing to do when I feel like that!

As we are only halfway through August and the oppressive weather continues I make no promises about continuing to blog 😁

According to our weather station the humidity is only 68% today so it’s obviously not only that – likely it also has to do with the stuffy nights and resulting poorer sleep. Either way, really hot weather (anything above 20-21 c basically) always made me feel a bit limp, even when I was a child.

I have no desire to wish my life away, but still, I am looking forward to Autumn, how about you?

Is ME/CFS an AutoImmune Condition?

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Man with clenched hands, Feb 2011, Sarah Fincham, pencil on paper

Currently the WHO and the U.K. Medical profession regard ME/CFS as a neurological condition, but apparently there is evidence to suggest it could be classified as an AutoImmune one.

I know some people have been convinced of this for a long time, but it’s not something I’ve paid much attention to, though I’m now reconsidering.

The article links onset to gut issues (nothing new there, either) but also includes possible causes as stress – as most of us know, stress is lethal for the gut, one way and another, but in this scenario how do the neurological symptoms arise?

Probably also in the gut: I recently read the very interesting The Mind Gut Connection by Emeran Mayerby which examines the complex feedback system between the gut biome and the brain. Mayerby pays particular attention to the ways in which stress impacts on the microbiome and his book makes thought provoking reading for those of us with ME/CFS.

So what do you think? AutoImmune or Neurological in origin? Does it even make any difference, given that complex and extremely sensitive feedback system?

Recently a drug used to treat certain autoimmune diseases such as Hodgkins lymphoma, called Rituximab, was trialled on people with CFS. Though some people have reportedly had some benefits from it, a more recent clinical trial ‘failed’ – the drug was found to be no better than a placebo.. Personally I’m wary of all drugs now: on the occasions I’ve tried to take prescription meds since I’ve had ME the side effects have been terrible and I’ve had to stop taking them. I’d be extremely concerned about taking something like Rituximab which has very severe side effects.

The failure of the trial leads some immunologists to believe that CFS definitely is not an autoimmune illness, however there’s also some doubt as to whether we are all suffering from the same thing anyway…so who knows really?!

A change in diet however can impact ME/CFS in a postive way, regardless of whether it’s one type of disease or the other – thanks to that sensitive feedback system mentioned above. This I’m happy to do, and I have experimented with this a lot over the years.

The gut microbiome is also part of the immune system, so it certainly suggests that there’s a reason why some of us at least experience such a range of benefits from overhauling our diet. And this approach is certainly more gentle and rather less likely to have side effects.

I know for me, diet has been major, and given the link between IBS, which I had for some years, and CFS, this seems hardly surprising.

It’s also possible that the AutoImmune Paleo protocol might be worth a shot – it has helped a lot of people with other autoimmune conditions, as well as gut issues.

What do you think? Would you try the AIP? How about a really strong drug like Rituximab? Are you willing to be a human guinea pig? I’m not, but as I said I’ve had such strongly negative experiences, plus I have a ten year rule (picked up from a physician): only take a drug that has been in use for at least ten years for your condition!

How Can We Create Meaning and Purpose When we Live With Chronic Illness?

‘which is my work,

which is mostly standing still and learning to be astonished.’

Mary Oliver – entire poem here

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This tree is still growing despite the damage, Sarah Fincham, 2018

I talked a little about my own loss of meaning and purpose a while back, and the beginnings of recovering and reconstructing it. I’m pleased to say that whilst I’ve never been someone who has a very robust sense of purpose, I am re-constructing a sense of meaning which doesn’t depend on a spiritual belief system.

It involves quite a lot of standing – well sitting, actually – still and being astonished. Fortunately there is a great deal to be astonished about in the natural world – even familiar, overlooked and dismissed things such as the soil beneath us contain multitudes (on the topic of soil I have just completed an excellent free course on that very topic through Future Learn. If you have any interest in the natural world at all I highly recommend it).

And it is this  re-engagement with the natural world which has rekindled my interest in drawing, finally, too, and is taking it off in a slightly different direction. So I’m getting there.

And purpose is coming through writing this blog, which has led to more interaction with you, those handful of people who read this blog – thank you for that! I sometimes feel very self-indulgent – writing and talking about illness has never been of much interest to me, to be frank, in the past. And I continue to have my limits now, but sharing some of my experiences here feels useful and the connections we make as a result are valuable to me. Maybe we will all learn something of value about these drafted illnesses through our exchanges.

Having a sense of purpose when you have a chronic and/or fluctuating illness seems more challenging to me that developing meaning, perhaps because meaning is essentially a mental construct. We might develop it out of what we do or don’t do, but it isn’t dependent on it. If I believe in a God I might explain my illness as something God has sent to test me. Or I might see it as a challenge to be overcome – unless it’s ME/CFS of course in which case that’s always counterproductive…

But purpose is different: inherent in a sense of purpose, for me at least, is action of some sort, and for those of us who are ill, this is where it becomes difficult. We can’t always meet commitments, or the very things we want to do which give us that sense of purpose also drain us of energy.

I have no solution to these issues – they are just things I’m raising because they don’t seem to be discussed too often in relation to illness, as far as I can see. But illness makes a need for a sense of purpose and meaning all the more pressing in my opinion. If we are coping with daily pain, disability or just lack of energy, our need for a reason to keep going is all the more vital as living without them provokes ‘considerable distress‘ in healthy individuals. What then the consequences for those of us who have health issues to manage?

Perhaps these very issues are the reason why depression occurs so often in people with chronic physical conditions? I think most of us have met that someone who always and only talks and complains about their health, who would perhaps not be seen as depressed by the majority of people so much as just plain hard to be around, because they are always moaning. But depressed is what they most likely are, and sadly they don’t know it, or perhaps view it as ‘their lot’ in life – itself a big red flag for depression and hopelessness.

I hope I’m not depressing you, though: for me it is good to be aware of these issues, because I definitely find that there is a delicate sensitive feedback loop between my mental and physical health, and if one slides the other always follows, making it so much harder to pull myself out of it again. In that regard I still have a way to go, but I do at least feel motivated enough to act in my own best interests now.

How about you? Where are you in regard to purpose and meaning these days?

Some Problems With Dairy

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Digital Sketch on iPad using Bamboo Paper app, Sarah Fincham, 2012

Before I start this I just want to say I love dairy products and I don’t think they are inherently a problem, or an unnatural food – for those who can digest dairy products without issue I personally don’t see a problem – apart from intensive farming of course. Humans are omnivores, after all, we can eat a variety of foods and it’s this very ability to adapt to different diets which has enabled us to live in so many different environments. That isn’t always a good thing, however, that’s not what I’m intending to write about, so I’ll haul myself back to the point of this post and press on.

As I have no doubt mentioned before, I’ve had issues with dairy since early childhood. I gave up all dairy for years because of IBS, which promptly improved once I did, then disappeared altogether once I stopped eating wheat. Later I discovered I could eat butter and cheese without stomach problems, which was great (I adore cheese love, love, love it). However I also found dairy consumption caused breast pain before my periods – not so great.*

After following the Specific Carbohydrate Diet for about 8 months a couple of years ago I found I could drink milk again, and eat cream. Yum. So I did, and have been doing occasionally since, as periods are no longer an issue.

Back in May, when I was focussing on getting my microbiome nice and healthy I began eating yoghurt more regularly. Then we went on holiday and as I do on holiday I pushed past my limits a bit, because, well fun. (My idea of fun, at least).

Needless to say I got a symptom flare. And it went on and on. I was diligent about diet, yoga and Yoga Nidra, though I carried on with the yoghurt and cheese too.

Two weeks ago I decided that as dairy is a common problem I’d try giving it up and see what happened.

Three days later, even though I was actually feeling stressed out when it happened, my sore throat just went. Just like that. I literally noticed it stop. The annoying phlegm in my throat went too. Other symptoms died down and I began to feel better.

Was it the dairy? Or rather the lack of it? I can’t say for sure – I did eat some on my birthday last weekend and yes I did get a flare up the next day, but I was also out in the heat on the Saturday using up lots of energy so it could have been that too.

Nonetheless I’ve a feeling that as dairy has always been a problem for me one way or another, it’s quite likely it’s a trigger now. And since I do feel so much better generally than I have done for a long long time I’m willing to avoid it again.

I will explore more though – whilst I enjoy thought experiments, fundamentally I’m an empiricist at heart and I need more evidence, especially as it’s impossible for me to control all other variables.

I hope it’s true though – mostly because although I miss dairy foods (cheese, how I love thee! Did I mention that?) at least it’s something that’s easy to control. Much easier than stress, for example, which is impossible to avoid – and doing so completely may be counter-productive anyway.

So what about you? Any thoughts about your experience with dairy and ME/CFS?

*given the regularity of the menstrual cycle I was able to test this out enough to feel certain that it was eating dairy products which led to truly horrendous breast soreness prior to my period. No dairy = no pain.

Trigger Points and Tendonitis mark III

After a further week of self massage, care of my thumb during the day and splinting overnight, I am definitely improving. But I’m not out of the woods yet and I’m feeling pretty worn out today. As I have a rare big day out planned on Saturday I’m keeping this short and sweet as I need to rest up.

Self massage of ones’ back with a lacrosse ball in a sock is surprisingly tiring: I have to position the ball against the various spots on my back, lean back, then flex and straighten my knees 8 times for each trigger point – add in the extra bends for when I think I’ve got the position right, only to find I haven’t (these times are increasing as the inflammation reduces and it’s not always so easy to find them), then multiply that by six session a day and it’s not only a workout but a full time job!

Since I’ve started this I’ve had several days when I’ve felt wiped out – I don’t know if it’s the exercise or the release of blocked lymphatic fluid or both. Either way, it’s tiring.

But it’s so worth it! Initially I triggered all kinds of things – a worsening of TMJ, neuralgia attacks, headaches, referred pain all over the place…but now I really do feel a lot better.

I can’t feel the points at all most of the time. Even when I massage the pain is so much less. The tension in the muscles surrounding the trigger points has melted away, and my shoulders have stopped feeling like a rusty bit of machinery when I do shoulder rolls!

My thumb, too, is improving. I’m still leery of knitting and hand sewing, but the up side of that is I’m drawing again, which I’m happy about. I think I was using knitting as a way of procrastinating/avoiding and now I’m back into sketching – and getting outside more – I’m really glad I haven’t got that option.

Mind you, I feel incredibly rusty when it comes to observational drawing – so that has been challenging and I haven’t felt like sharing anything. Nonetheless I’m feeling great about starting again and so glad to be making progress with these damned trigger points. When I’ve eradicated these primary ones in my back, I have a nasty one in my neck I’ll start working on, which seems to be connected to the TMJ.

I won’t be posting on Monday – I’ll need recovery time from the weekend, but I’ll post next Thursday and it won’t be about trigger points or tendonitis, I promise!

Taking a short break!

After my last post talking about the trigger points and tendonitis, I’ve decided to take a break from the keyboard. I’ve actually really improved since Monday, but as the keyboard can be a trigger for both issues, I don’t want to jeopardise that.

See you in a week!

Trigger Points, Tinnitus and Travelling Tendonitis

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Bus Family, sketch from foreverago, Sarah Fincham

Quite apart from the alliteration, which gives me a frisson of word loving pleasure (I am not joking, it’s physical!), these three things (unintentional alliteration this time, I promise) have a couple of other things linking them, apparently.

Firstly, many many people with ME/CFS have at least one if not two, and will likely develop the third over time,

And Trigger points are possibly the origin of the other two.

I remember my first trigger point. My GP found it, and recommended I go to an (actually his ‘personal’) Osteopath. Someone who manipulated bones and joints didn’t seem an obvious candidate for dealing with muscular contractions, however I followed instructions and it was £300 or so well spent – I felt better all over after my first session and 7 more later I had no more problems – and this lasted for years. Only more recently have I had major issues with them – in fact they were probably creeping up on me, and I didn’t know it, but I’ve now got four nasty ones around each shoulder blade, and goodness knows how many more I don’t know about yet.

And Tinnitus.

And Travelling Tendonitis.

Of all of them, the tinnitus causes the least issues – since I’ve always been able to hear noises others around me can’t, when it first began I just assumed it was something outside of me, that others weren’t capable of hearing – so it wasn’t stressful and I was able to block it out. It was several years before I learnt I had Tinnitus and by that time I was so used to it, that it hardly bothered me. Consequently (and thankfully) I am not one of those sufferers who has to have background noise on all the time. I can hear it now, as I write, but I’m thinking about it. Once I move on to something else it will fade away again.

Believing that troublesome things are coming from outside of you, is a highly underrated strategy for coping – at least in this instance!

The effing Tendonitis is another issue though. Over the last decade I have had: Tennis elbow in both elbows, tendonitis in the top of my foot, recurrent for several years – finally stopped when I began wearing Birkenstocks, only for the tendon below my right kneecap to play up. That’s an on off thing – it can be fine one minute, then agonising the next. Plantar Fascitis features in my history too, not to mention a Plantar Fibroma  (barefoot shoes took care of that one). I’ve had RSI in my left thumb, a Trigger Finger in my right hand (mild, recurring), recurring Tendonitis in my left forearm, and finally I currently have Trigger Thumb on my right hand which is really painful and has meant stopping knitting and hand-sewing, and splinting my thumb every night.

Interestingly the bulk of my problems are on my right side. I have scar tissue from a shoulder injury on my right side, the Trigger Points are worse on the right side – and began there even before the shoulder injury. When I had migraines, it was always on the right side of my head.

So when Trigger Thumb developed in my right hand it occurred to me that the problem originated further up, in my shoulder. I already get referred pain up the back of my neck and around my jaw – which has re-triggered a TMJ problem – So my thinking was, what if this is actually going down my right arm now?

A little bit of internet research led me to this article on Trigger Points and Myofascial Pain Syndrome: some of the content has to be paid for, but the free article is really worth reading, especially as the average medical practitioner is not very knowledgeable or helpful in this area. Sure you can have injections to reduce the pain in affected tendons, but all that does is reduce the pain – it doesn’t take care of the underlying problem. And they don’t tend to regard Travelling Tendonitis as much more than bad luck.

But what to do? I’ve had overall benefit from Bowen Technique (but this require money), restorative yoga helps too. I’m awaiting a Magnesium Oil to massage into affected areas, and Magnesium supplements are helpful – as is protein, apparently, though that may be conjecture rather than science.

Finally I also read parts of The Trigger Point workbook a few years back, and had some success with using a Lacrosse ball in a sock to massage the points. I actually eradicated one and it didn’t come back. However this approach demands real dedication and perseverance, not to mention energy, as you have to massage each individual spot at least 6 times a day. inevitably, my dedication wore off. But I’ve started again – because I now fear my body seizing up altogether, and I’m finding this is quite a good motivator. Well, that and my current pain levels, which are quite high.

The one thing which really did nothing for me, was totally unenjoyable and I wouldn’t consider again, was Myofascial Release – a form of massage which targets Trigger points. A single session was two hours long, it was incredibly painful at times, caused severe bruising and the one point she managed to release was back within 24 hours.

As my thumb is now complaining, I’m not going to link all the topics as I usually would, so you know what to do if you want to know more about anything I’ve mentioned here – sorry about that!

How about you, dear readers? Do you have any or all of these problems? Found any solutions? Please share – people in pain want to know!

 

Proteins: Getting Enough

 

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At Night Lisa Often Dreamed She Was Flying Naked Over the Rooftops of Norwich, 2012, Sarah Fincham, mixed media on scrap card

Are you? If you’ve always been a meat eater you’ve probably never stopped to think about it: there’s simply no reason to. All animal based proteins are what are known as ‘complete proteins’; that is, they contain all of the nine* essential Amino Acids humans must have daily, and often some or all of the semi essential and non-essential ones too.

Here’s a crash course (follow the link for more detail):

Amino acids are the building blocks of protein.

Essential amino acids = those we cannot make in our bodies

Semi essential amino acids = all other things being equal we can make these in our bodies

Non essential Amino Acids = we can make these easily

As I said, if you’re a committed meat eater, only read on out of curiosity. If on the other hand you are a new vegetarian, vegan or ‘plant based’ eater, or thinking about it and you have ME/CFS or any other chronic condition and don’t know about amino acids then, whilst I obviously don’t recommend you consider this blog the authority, please read up about them.

I’m thinking about all of this a lot because I’ve made some alterations to my diet lately and it has meant reconsidering these issues – which I haven’t thought about in detail for years. We are now eating more vegetarian meals, but as I’ve said before, I know I need protein to keep my energy and blood sugar as stable as possible.

Apart from Quinoa (which has issues actually), and Tofu, all vegetarian and vegan sources of protein are what is known as incomplete. This means they do not contain all nine essential amino acids, and may or may not contain semi essential ones. This means that they need to be combined, not necessarily at every meal, but if not then you need a variety throughout the day. Incidentally this is why some form of rice and beans is found in many areas of the world: the two together do make a complete protein.

There’s another issue though: for amino acids to be used truly efficiently in the body, they need to be accompanied by B vitamins. These usually come handily packaged together with the acids in animal proteins, but this is not necessarily so with non animal sources.

As a result my egg and fish consumption has gone up! No bad thing, really, they are spectacular sources of nutrition. An egg contains everything needed to make a new life. That’s pretty amazing to me. Milk is another useful food – it’s nutritionally dense, and vegetarians who eat milk and eggs rarely suffer with B12 deficiency, or other issues, for that matter. And fish of course is a source of all types of Omega 3 essential fatty acids. There are plant sources of Omega 3, but they contain only AHA, and this requires conversion in the body, something not many of us are good at.

I do get hungry in a way I’m concerned about now, though, so I don’t know how long this will last. I’m not getting hangry, but I do get that feeling of ‘needing’ to eat. Something I haven’t experience since I began eating an ancestral/paleo diet. this is despite keeping my protein levels as high as I can. The fact is, for me anyway, plant proteins simply aren’t as satisfying, even the complete ones. And I think the reason might simply be that my body has to work harder when I rely more on them – it needs to make more semi-essential amino acids, as well as the non-essential and it isn’t getting quite the same level of protein it was before.

I am concerned about this – I’m feeling a real conflict between my health and my values – my values would like me to be vegetarian, as I’ve said before, but I don’t think my health can take it – as I’ve also said before. The protein sources simply aren’t good enough.

You will often hear from Vegans that we don’t need as much protein as we are told we do. That may or may not be true for healthy people – (there’s no evidence for the claim but who knows? It may be true), but for those of use with chronic conditions, or those of us under stress – and having a chronic condition of any kind is a source of stress – we absolutely do. When the body is under stress it is not as efficient at making semi essential amino acids as a healthy body is. (this link is to a PDF – you’ll need to scroll down to find the right article) Plus it has a greater need for protein in order to heal.

If this whole topic is new to you, you may be wondering what happens if we don’t eat enough protein over a long period. The answer to that is, the body starts eating itself: we lose muscle. Our fat stores, unfortunately, remain completely unaffected. I don’t think that is happening to me – like I said I’m getting plenty of eggs and fish, and also some chicken. We have an incredibly high welfare chicken farm near us, and I have seen those chickens on many occasions. My chickens come from there, and my eggs come from another local farm where I can see how the hens are kept.

The clash of values and health is something I have been considering for a long time. We are fortunate here in that there are many local sources of meat where I can see for myself how the animals are kept. However some issues remain the same: transporting animals for slaughter etc. I am enjoying the increased variety in my diet, but. I definitely notice a difference.

*Some sources claim that only eight of the amino acids are essential. I prefer to err on the side of caution.

I have spoken to one or two other people about this, and they’ve noticed similar issues to me. How about you? Have you explored dietary changes, and how have they affected you?

 

Living or Healing?

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‘Patricia Liked to Think of Herself as The Venus of Lowestoft’, Sarah Fincham, 2013, mixed media on scrap card

Recently it really has felt like a choice to me. Focussing on healing has meant putting off doing some things so I have the energy to do all the healing ‘work’, or the time to simply recover from sessions of the Bowen Technique (which can take days). There have been so many days when I feel like my life was only about doing things that were ‘good for me’, or basic living tasks like simply taking a shower, and there was nothing fun at all, anymore.

At the beginning of this year I decided to stop trying to heal. Depressed me made tihs decision, of course, and no doubt it was motivated by my total lack of, ahem, motivation. But since my mood has lifted I’ve found that actually it was a good decision.

I spent three years trying to heal, one way and another. I certainly found things that help, but I also found that I felt like I was putting off actually living. I’m 52 (almost, yikes), my time remaining is certainly going to be less than I’ve already lived, and it passes more quickly with each year. I’m no longer willing to not do things because it will screw up my healing efforts. If I want to push myself for a day now, I do. And I recover by taking good care of myself. I don’t do it too often, but it’s definitely the difference, say, between a fun holiday, and a dull pointless one. I need days out. I need to be ‘normal’ every now and again – for the sake of my mental health, as much as anything.

And I’m preferring it, quite honestly!

For those three years I began to feel something I had always made a point to avoid: like my whole life was about having ME/CFS. Up to the point where I made myself really sick I had always ensured that my life had other things in it, which made me feel fulfilled. For the last few years, with little or infrequent desire to do anything creative anyway, plus the need to ‘work’ for recovery, that changed. And I really don’t like it. I have improved yes, but we all know ME/CFS is a fluctuating condition – I may have improved anyway, for all I know.

Today Pia posted a general update about life, health and exercise – which is actually what prompted todays post – and she mentioned the Wahl’s Protocol. Dr Wahl says it can take up to five years to really turn your health around. I can believe this. But, wow. I don;t feel I have that in me.

And anyway, before I pushed too hard and got really really sick, I was pretty happy, despite the CFS. I managed the illness, I was creative and whilst my living situation is far from ideal for someone with limited energy, I still live in a beautiful part of the country and was able to get into the forest most weeks. I painted when I could, had ample peace and quiet -well apart from when I moved out – somewhere secure to live with no fear of rent rises, at least one holiday a year and I got to go out occasionally to the theatre or a film, which is enough for me.

There’s a lot to be said for simple acceptance of where we’re at. Yes, I realise I am fortunate in many ways – I have someone who will help me and do things for me, my home is relatively secure, despite the seasonal flood risk. I am not bedridden, or even completely housebound now, as I was for a good while, though I have occasional periods where I have to stop going onto the mainland. We are not well off, but neither are we scraping the barrel every month – though that is largely due to living on the job. If we had to pay rent we’d be screwed financially as wages in Conservation work are poor, and rents round here are ludicrous due to the amount of holiday lets and celebrity second homes. There’s always a downside to living somewhere beautiful!

So for now anyway, I eat in a way that supports me, I am trying to re-establish daily Yoga and Yoga Nidra and I note that even though my efforts with both have been sporadic over the last nine months due to that lack of motivation I mentioned, apart from a resurgence of anxiety, nothing truly terrible happened. I am certain these practises do help, but here I am, not much worse off for practising only a few days a week, instead of daily. Make of that what you will. I have also picked up my sketchbook again, and made a few tentative sketches outside, and I prioritise ‘forest bathing’ every week, which always feels good.

Life is starting to feel a little more enjoyable again, thankfully.

Where are you at? Trying to heal or simply managing the illness and living? Or have you given up entirely?