This article was inspired by the book ‘Wintering’ by Katherine May (2020) and studies the term in relation to those with the disease, MyalgicEncephalomyelitis, or M.E. for short.

Waterstones describes the book: ‘Wintering is a poignant and comforting meditation on the fallow periods of life, times when we must retreat to care for and repair ourselves.’

According to Ness Labs, the term ‘Wintering’ was initially a term used in biology to describe how certain animals and birds survive cold seasons…’

‘Wintering can involve reducing activity, conserving energy, and drawing on stored resources.’

Interestingly, it goes on to say…

‘Psychologists have found that these periods of retreat, when approached mindfully, can lead to significant personal growth and enhanced resilience, and research in neuroscience shows that periods of relative quiet and withdrawal are crucial for brain health.’

Well, what do you know.

A lot of us have been through the many stages of grief, and have had to work out how to maintain an existence of sorts in the solitude that MyalgicEncephalomyelits brings.

Many of us will have worked out our own way of having to deal with our new normal already, only then to receive structured courses that tried to tell us again what we’d already worked out ourselves because we’d been left to it for so long. The brain training type programmes such as CBT or NLP (and pacing) that came along often months later have been the only help we’ve been offered on the NHS. Then we were told that we weren’t doing enough and increased activity was a good idea.

Maybe if they’d just left us alone we might be in a better position now while we continue to wait for the biomedical science. If all they could offer has worsened our health, then the quiet withdrawal was surely a better option than forced exercise and condescending back to work courses.

It has harmed many of us, resulting in relapse, permanent disability for many and a lack of overall progress, not to mention layers of trauma from the ongoing abuse from healthcare systems, and the calculated inefficiency of the DWP system.

A one-size-fits-all approach from healthcare that was only coming (and still often is) from a psychological perspective. One that failed to see beyond that. We all know that brain training doesn’t provide curative effects for complex multi-system physiological diseases such as M.E. A lot of us have however worked out over many years that mental resilience will be tested to the absolute maximum with a disease like ours.

I hope Katherine will understand the way I have utilised, her book, if she ever sees this (mostly unlikely), but I’d hope she would be pleased in the way I’ve used it as a tool to highlight the appalling and often hidden aspects of Wintering for people with MyalgicEncephalomyelitis, and now Long Covid M.E. who really need far more advocacy and support than they receive. 

This book was a brief prompt, a catalyst to write about the perceived term of Wintering for the usually able-bodied. I’ve used it here as a subject for discussion. One that myself and many others are now experts in due to long-term chronic health conditions. Those health conditions in particular that get little help or exposure via the arts, media and culture industries - yet.

I’m talking about the constant Wintering we have to do that the able bodied have not really had to consider before.  This is not something of a luxury for us to delve into as we deal with a short period of it in our lives, as it may appear a cosy subject for others.  Those new to this can learn a lot from us, but ultimately for the long term Winterer, it’s a grieving process that you’re forced to go through, and for many of us it is a constant one.  It hits us multiple times.

The Wintering book as delightfully poetic and helpful as it is to many, seems to be about a brief period of a persons’ life. I say brief because a year for us is brief when many of us have been ‘Wintering’ for decades. So to offer support to others going through a short term difficulty that can be applied to life generally it is a great book I suppose.  I’m writing about it here as I know there are many more resigned to a half life due to post viral infection, now living with Long Covid / M.E. where their lives have been devastated by it, the complete upheaval and loss that it brings, of no longer being able to work, play or look after children, or do any of the things they did before, as a result. 

I didn’t get to read the whole book, and as I furiously wrote many notes as I read small parts of it, I realised that I needed to write my own response to this, for the chronic long-term illness community, and more importantly for those people to be able to share with their able-bodied allies (where they exist).

‘Wintering’ is not a book that will help me in the same way it helps others experiencing a short-term of Wintering, but I am thankful it prompted me to write on what seems to be a useful subject for discussion.  If this is what able-bodied people are reading to help them deal with short-term hurdles in life, those of us living this for many years need to say something to help each other and our able-bodied friends and families too, to help them understand what long term Wintering means and how it feels. No doubt there are countless books out there for those of us dealing with M.E. and now Long Covid, and we share our experiences so eloquently all the time in articles and memoirs, art and podcasts, but for those ill-informed on long-term conditions, especially M.E. and because of its signifying hallmark of PEM, this might help to offer some insight to them, so others can understand what it’s like to have to constantly ‘Winter.’

WE need our stories in mainstream media too, even those without the happy endings that society demands.

As someone who is autistic, perhaps Katherine understands that navigating her own differences within society have at times been challenging, and I’d hope she would be pleased to hear that her book has created many subjects for discussion as well as offering an oasis in the seemingly never ending darkness to those in their short-term wintering phases of life. Finding strength and opportunity is what we all do to survive in extreme circumstances, afterall.

I was compelled and inspired to write on this subject myself due to some of the references Katherine made in her book. All of our experiences need to be validated here, including those of us who are able to talk at great length about such subjects yet never get the chance to be heard; and because it is for the majority of our lives we don’t seem get the same opportunities in life as the physically able-bodied, because we are often hidden away from society, existing on the fringes.  More of this definitely needs to happen in the arts, especially for those who are not so privileged in society. So, to offer some commentary and response to it from my own perspective seemed an interesting topic for discussion.  I am also privileged in many ways that others aren’t, so I hope to be able to speak on behalf of many who are unable to do so, for whatever reason.

From a political standpoint this is entirely relevant to the messaging that is coming from central government and medicine in the 21st century, aimed towards the long term sick and disabled, so it’s of great importance for others to understand, as more people will need to explain their predicaments to others who are totally alien to these types of long-term conditions.  I feel sometimes we need to put the record straight a little and this is a perfect opportunity to do that.

I have written this article in a way that references some of the text with page numbers and my response to them which is easier perhaps for myself and for you the reader, whether you have the book or not. There are certain ways I have to cite text from the book to avoid copyright restrictions and for some where I haven’t noted the page number, I’ve described what it says instead. I may have lost the places where I was at during some points (it was a humid July), but all are responses to snippets of Katherine’s book.  I also want to make it clear that this is not a critique of Katherine’s book, but an opportunity created by it. One that left a gap for the missing narrative of those needing to be seen; to highlight more about the subject for so many more of us; so thank you Katherine for giving me this opportunity, and thanks to my friend who had bought the book.

I had never planned on this being a piece of writing to share publicly on my website, but seeing as I’d written quite extensive notes in response to the book, I felt it important to share, in case it helps others feel seen and validated, which as we know is increasingly difficult in our society. I’m also on month two of trying to recover from a SARS-COV-2 variant, waiting for my portable air filter to arrive in time for an appointment and class this month.  I’ve been feeling very fed up as I’d already spent most of December stuck inside trying to feel well enough to just about have some kind of Christmas with people after being alone since last September. I’d been out only a handful of times since the end of November / December, and endured through Christmas and New Year with no sight of an end to it yet, so resting and writing is keeping me sane right now, as usual.  The viral load is long lasting and there are no signs of it going away yet, which is always worrying for those of us with M.E. The monster lurks.

It’s my own response to a book, from the perspective of a person with a never ending type of Wintering endured as part of a living with a long-term chronic condition (that receives no medical intervention), so I felt compelled to offer my view, and perhaps speak for many of us living with M.E. (and now Long Covid on top), Wintering all year round, for decades…

Wintering …

Katherine discusses the term ‘Hygge’ the Danish term used to describe cosiness as she prepares for Winter during a period of illness she’s become accustomed to.

She hits the nail on the head in many ways about the feelings and emotions one experiences during long periods of illness; but then this paragraph reminded me of a quote made by George Osborne about not working being a lifestyle choice, as Suella Braverman then used to affect similar vitriol over the homeless. It has since become a dangerous slight towards those with disabilities caused by long-term sickness.

May, 6 February 2020 (p.34) writes:

‘I wonder if I am perhaps a little too beguiled by this; whether my sense of malaise is actually a lifestyle choice, an urge towards homely perfection to soothe the turmoil that until recently has lurked in my life.’

If only we had this luxury of thought Katherine has here. I don’t think any of us have ever felt beguiled by an illness as awful as M.E. but what a luxury that would be.

And there it is too, that word MALAISE. 

It’s a word we’ve been having to use to explain part of a hallmark signifier in M.E. called PEM (Post Exertional Malaise), which massively underplays the overwhelming affect of symptoms that accompany it.  We now use different words that are closer to describe what is actually happening to the body (thanks to science), and the actual experience of it because as you can see, the word malaise is used to describe something quite different, as it is used above. It is not an appropriate word for PEM in M.E. and therefore the reason I am using this paragraph, as an example to highlight the problem when connected with lifestyle choices and political misinformation then led by the media.  Those reading this book may then relate that to those people with M.E. which is entirely unhelpful not to mention disrespectful, by no fault of the persons ignorance to it. Education is therefore vital for a more understanding society, gained through knowledge.

It is perhaps another attempt by psychiatrists who renamed M.E. ‘CFS’ to downplay the disease it is believed, to save money for the DWP and insurance companies.

In a very well researched and comprehensive article written by Amanda Francey, you can read about the history and dogma around post-acute infection syndromes such as M.E. by clicking Amanda’s name above. Prepare to be shocked (it’s the time when they also threw children with M.E into pools to see if they’d swim).

In actual fact CFS is one part of M.E. and other conditions too which is where it can be confused as one and the same.  A lot of us think, done purposely so, much like the calculated inefficiency of the whole benefits system surrounding sickness and disability. You will understand that a bit more if you read the above article or have ever seen Paul Laverty / Ken Loach’s  ‘I, Daniel Blake.’ Just be thankful if you’ve never had to discover it for real.

It can happen to anyone at any time in their lives.

As with the word malaise, it’s a similar case with the word ‘Fatigue’

Read more about PEM here

I wanted to use Katherine’s example to show how these words can so easily be misunderstood in terms of disease context and in particular diseases such as MyalgciEncephalomyelitis.  It is also estimated that there are more than 250,000 cases in the UK, the figures are yet to be updated. Crunch ME may have more up to date information.

When there is an unequal playing field, we need to educate and inform others.

We now often use PENE (Post Exertional Neuro Exhaustion) or PESE (Post Exertional Symptom Exacerbation) and not just PEM when discussing M.E. or Long Covid because it’s a totally different elemental factor overall, and one which hallmarks our disease.  When people read such books using this word ‘malaise’ they will relate it to the same thing used in PEM which is entirely unhelpful and continues the skewed narrative. 

Katherine’s use of the word seems in context of what she is saying. The understanding of malaise therefore is a word used alongside fatigue that can be applied to any illness. Not as is the case with M.E. We know the cause in the case of M.E.  (over-exertion, hypoxia -exercise intolerance due to lack of oxygen, parasthesia, pain, cognitive, neurological symptoms and so on).

Cue the classic hand to forehead, the catch-all image used by the media to try and portray this complex neurological-immune disease. They could of course, ask those of us with the disease: artists, illustrators, documenters, talented creatives and filmakers, perhaps even pay for contributions from people living with the disease, that better represents us. It might even create more of the clickbait marketing many like to use. An image from a lived experience, a clip from a film. Real life. Human connection. Media can do so much better.

In other ways Katherine’s words resonate beautifully, as we do have to become so in touch with ourselves and it’s perhaps right on many levels: that we are most likely protecting ourselves and this is in our nature: we instinctively listen to our mind and body as to what and where we feel ‘comfortable’ right now, in order to exist. This is human. Our bodies shut down to protect themselves (except for when insonmina hits with M.E in the cruel way it keeps us exhausted but wired so recovery is scuppered). So, here again it is a statement not completely comparable to M.E. although in some ways we still literally have to trust our gut (if it’s still working as it should).

For those severe there is little choice whatsoever, and you will be lucky to do anything else other than merely survive to exist with very severe M.E. as your body struggles to digest food, for example. 

Even for those of us who fluctuate between mild-moderate-mild, there is always a chance of slipping back to severe/very severe and many of us on this spectrum will also have setbacks where we are paralysed with crippling symptoms and bodies of lead, for days, weeks, months and years.  Until we know how to treat M.E. we must carefully manage every aspect of ourselves to avoid relapse which is not always possible especially with careless healthcare and new viruses, not to mention the stress of everyday fast- paced living that we cannot even pretend to keep up with anymore. Many people are having to slow down, and not always out of choice.

As a privileged woman, Katherine can say these things because it seems she currently has the luxury of a stable roof over her head and a loving partners support. It doesn’t sound like she’s having to fight for support to keep that roof over, dealing with endless DWP assessments, collating and gathering evidence, and being spoken down to like a piece of dirt by some of those awful people within the system.  

Yes it can be true for some with short-term health complications to revel in the doing nothing, and it’s true by her text that there’s some deliciousness in this newly discovered hygge of hers, but I’m sure it would lose its appeal after 5-15 years of having to do it because you are still too poorly not to and still too poorly to work, socialise, actually have a LIFE, with no news of help coming in the form of healthcare. 

Then there’s the soul destroying form filling and assessments for benefits, adding layer upon layer of trauma each time as you have to relay the awful situation this disease has put you in, through no fault of your own; unless you’re lucky enough to be rich or have a partner to support you financially.

This is the luxurious way a privileged person can deliberate over life in general. It often means they have a choice. It’s a different language and one you will learn becomes obsolete in long-term chronic illness, and if you’re not so fortunate. 

Above: extracts taken from Niko Suvisto’s beautful photography as he documents life with Severe M.E.

In the first image, text is taken from a longer post which can be seen under the recent landscape bed image from Niko’s instagram.

Introspection

To begin with, I wrote notes in response to the Wintering book, to get some frustrations and anger out that this brought up for me when I was unable to relate it to the far removed type of Wintering I had to do as a person with M.E.

I wasn’t going to publish anything, because I thought it was too difficult to compare with our type of imposed Wintering and did not want to come across as criticising it either.  As someone with M.E. which is criminally misunderstood and stigmatised, the trauma and abuse spanning decades; even via our ancestors, felt too much of a task to write about in comparison, to a term with such gentle connotations; but then I’ve seen others discuss her book too, and I felt that to write this was in some way to support, stand up and speak out on behalf of our community, those I ‘see’ everyday as in the images above from Niko, and the other brilliant contributions here.  It would be criminal not to talk about it and expose our Wintering to the world too. We are those ‘mammals’ fighting for our existence over a much longer period of time.

As I sit writing this article myself from a somewhat privileged position compared to others (I own a laptop, can afford supplements to keep a low baseline currently, and own my own home - another story), compared to others who don’t have a roof over their head, can’t afford to eat well or buy supplements to help their condition;  I still sit here with heated blankets because I can’t afford to put the heating on for more than 2 hours a day, and only when the thermostat hits 15oc or below (it’s never been above 19oc); or replace my 20+ year old boiler, yet have to be at home resting for over half of my week.  Most of my spare income goes towards saving to see specialists, and a few treatments for relief from symptoms; money towards sorting my damp house out, HEPA filters ( a new addition), and constant replenishing of expensive daily supplementation, just to maintain a low functioning baseline of existence, because there is no healthcare for me with my condition on the NHS. I would not call that great privilege, but respect the fact that others have even less.  

Worse than this though, is the fact that I’m mostly isolated and alone week-by-week.  I’m slowly working on that in terms of being able to live somewhere I can connect more easily and safely with others, but it’s a painful reality for many people with M.E. So many have also had to move back in to live with their parents if that’s an option because they can no longer afford to keep a roof over, especially if they’re single.

Time to luxuriate in the way that Katherine does in her book must be wonderful.

Health is wealth as I say. I think I’ve made my point.

On p.35 the book then goes on to talk about going out for a slow walk and then the sudden guilt and paranoia and the need to justify this

By the bottom of the page Katherine says most of all she wants to disappear. Don’t worry, you will, especially if you have M.E or a similarly gender-biased condition, then mainstream medicine definitely won’t see you. The DWP however may employ spying tactics to guarantee less enjoyment when you are able to make it out, due to the induced paranoia associated with anything you do that looks productive or fun. They rinse any opportunity for progression in that way, or of a life that contains some ounce of enjoyment too. They even try to take that from you. The Canary reports more on this with the introduction of AI. This is all then lapped up by the media which helps to spread hatred towards people with disabilities.

‘I want to give an account of myself, force everyone else to understand.’ May, 6 February 2020 (p.35/6)

This paragraph right here, above explains my constant long posts on Facebook over the last 10 years or so. The rantings in despair, of my own disbelief at the constant barrage from various symptoms, the hellish nights and days in pain, the severe insomnia driving me to an early grave; that a disease could be so cruel yet so ignored.

I now use instagram to make a more pictorial diary to try to make sense of or to see patterns that might emerge, to be able to help myself, and to make a record of symptoms, because without a treatment plan on the NHS, you have to do everything yourself.

It’s the urge to be understood and seen and supported by your tribe. When that tribe ignores it because they cannot understand or begin to imagine, and so often don’t know what to say, you then fall down to a new level of losing your identity a little more, and your soul screams out in anguish. It comes across as over-dramatic so then the psych narrative gets more cemented. It’s like a cruel joke. Your world becomes even smaller (as if it couldn’t get any smaller).  Campaigning is then the focus until things change, as many have done before us, but that takes allies too and we are still trying to build on that which often feels fruitless.  Small seeds however grow into bigger things.

If I were to write a similar book from an (invisible physical disability) disabled viewpoint, in my case and for many others, it might be called ‘Constant Wintering’

Followed up with 'Forced Contemplation’ and then perhaps ‘Perpetual Grief’.

It is a book that continues to be written in all of us until the end is in sight, because currently there isn’t an ending, happy or otherwise, unless your route as others before us have done is to choose an assisted death. Some have made some improvements due to being able to find and fund the right investigations and specialists, but these are in the minority. And there again is privilege.

Progressive diseases such as ALS/MND are terrible in comparison, although it is recognised and there is education and knowledge, awareness and acceptance of it, thanks in part to those Rugby players in the spotlight highlighting their experiences. We are aware and also told that there is always someone worse off, but it changes nothing in terms of the stigmatisation and neglect of our disease.

On The Subject of Allies…

40 for 40 campaign are an amazing example of allyship and ThereforME have managed to get some media coverage following Maeve Boothby O’Neill’s inquest last year. Another leader in relentlessly nudging government and healthcare here in the UK is the extensive work of Sally Callow .  People like Dave Tuller who conducted a response to the PACE trial, exposing bad science, was involved in Act Up - more about that in relation to M.E. here

Others I’ve mentioned you can also find in Part One including a video by A Broken Battery. The one below is an especially important one, pertaining to the shocking history of our disease:

The tireless work of Steve Topple and Nicola Jeffery overseeing, protesting and supporting families of those with very severe M.E. in dangerous situations in UK hospitals, have been stalwarts to the cause. Links can be found in Part One regarding these young women.

And those allies having previously been in the media spotlight, like Jennie Jacques ItsAliceElla and Matt McGory. Allies like this are so important because our culture loves celebrity. People sometimes listen to them. I call Alice Ella a celebrity because it feels like she’s one in our community, not to mention previous appearances on Channel 4, such as First Dates and The Last leg.

The amount of meditative hours I’ve put in over the years have brought some enlightenment, allowing me to get to know myself even better. I’ve been able to provide myself with my own sparkling company over many weekends where no visitors are coming. The endless optimism I maintain, taking joy from the smallest of things, fuels an endless positivity, despite having to be alone most weeks. It often gets manic and hyper because underneath you’re wanting to explode, run, dance and sometimes I try and then feel the payback all too quickly.  Sometimes it’s worth the mental gain. Or disassociation kicks in. Or I start talking to inanimate objects (or throw them), but after 17 years (or even 6 months-a year for goodness sakes), you need your purpose back and to be productive and ‘doing’ again, physically doing in my case. 

I tried with ThriftVIP nearly 10 years ago now, to create a role for myself that might be manageable, but it still wasn’t manageable enough without the help from the NHS, the stigma from wider society and systemic, ableism. We need treatment centres, specialists and funding for science that matches that of other less disabling diseases, in order to reclaim our place in society.

Social contact is non existent most weeks.  The silver linings fray after a while, no matter how many you manage to muster up and find, in an effort to create some meaning in a life.  A life consisting of only the crumbs of a former one.  Again, for those privileged enough to be able to live where they’re happy, with supportive friends and family nearby are not the majority. So many have been abandoned by those they thought were there for them, those closest to them, and it’s broken their hearts.

And we just want to be met halfway by healthcare.

The amount of toxic thinking Katherine’s book brings up with her own fears and guilt of being ill and off work really highlights this awful kind of society we all find ourselves in, one where only work equals success.  Where the economy is the only important aspect of our society.  Yes we all understand how the world goes around, but love and compassion for people who want to be a part of giving purpose to that too is paramount.  Without a healthy workforce, there will be no survival of the economy.

Toxic strivicity is a message maintained by those who hold all the cards, the power and the money.

The types of questions Katherine brings up for herself are akin to the awful daytime TV drivel we often have to endure: we must be healthy, active, productive; and these are the types of feelings of guilt we experience when we first become unable, when we can no longer do, as we used to (keeping fit, keeping the house clean, washing, getting dressed) and so on. We are then subjected to never seeing ourselves again on TV, not as someone with M.E. represented appropriately.

Films like Ibelin offer us an insight, a brief encounter of a life, one hidden online which I hope will inspire a new generation of filmmakers. It is a vitally important way to help others see and understand the isolation and longing we feel to be part of the bigger picture. To grow an empathetic generation is paramount to our survival as a society. Gaming in a meta world makes sense when we cannot often do it IRL.

We are a captive audience when unable to move or do much else (if we can handle the sensory aspects); and when all our podcasts, books, bilateral sounds, ASMR, meditation, mindfulness, other TV programmes and film resources are exhausted….

‘Are you even allowed a holiday when you’re signed off work’ May, 6 February 2020 (p.35/6)

Oh dear, here’s more ammunition against the long term unable. 

I’d say a break is actually what you need if you’re well enough to go and can afford to without having to spend all your time on admin, preparing for an almighty battle with the DWP again as they review your ‘nothing has changed’ situation. This it turns out is what Katherine’s doctor told her, that a break would be good, but it just shows how we are conditioned to feel immediately guilty for looking after ourselves.  It’s a guilt often reserved for women it seems too.

A lot of us have not had a choice for a very long time. In fact we never get a day off with chronic illness so I haven’t actually had a holiday for at least 17 years. Not one I’ve been able to fully enjoy without symptoms getting in the way, often turning it into an endurance test; being stared at in airports as an ambulatory wheelchair user, saving up sleeping tablets, preparing supplements, and ways I can walk with my case and a stick if needed. The checklists….do I have enough sleep tabs saved up, have I got all my paperwork printed off for medications, will 2 weeks be enough to be able to at least enjoy one of those weeks with rest days factored in, as well as travel recovery? The planning and logistics of the whole slog is to the nth degree. But despite all this I manage to gain something from the change of environment and at the same time, to get away from the often toxic UK culture. 

I get that feeling most people have and what older retired people will often say when they say “if i stop that’s it, game over.”  Well, imagine that at age 16, 21 or 34 years old, or younger still.  We were stopped then, we had no choice.  Do you know how hard that is. Not to be active, doing, keeping fit. Living our best lives.  Having to watch everyone else do their things, caught in a land of no answers, no justice and no healthcare? It’s frustration of the highest order, I cannot even begin to explain, especially as a dance teacher, moving so much every day of my life before. Medical retirement in my 30’s, no end to knowing if I’ll ever ‘do’ again- can you even comprehend how that feels, to then hear someone else far older than you say that? It’s absolutely soul destroying.

I don’t know about you but when listening to our elders, especially when they do more than us in their 70’s and you’ve lost most of your most active years, but are still younger and still doing less than them, it’s a feeling of loss that is unexplainable, and it’s constant, having to listen to it all the time. 

Imagine.

Of course I’m happy for them, but that resentment inside confirms a palpable sense of loss and it’s visceral.

It’s also made more difficult to cope with and is compounded by the fact that we’re so misunderstood. If we had at least some validation and recognition, as others do with some neurological diseases, then we’d feel seen and praised for the major efforts we do make when we can. But often there’s nothing. No feedback, no interest in what we do, despite doing so much; many of us who are ‘striving’ alone at the mild-moderate end of the spectrum get nothing back in terms of recognition or support from others, apart from other members of this online ‘city’ that is, our peers within the community.

And I also agree that’s it difficult to see a solid future too….

May, 6 February 2020 (p.63) prompted another thought: 

‘When I cannot see a future for myself at 49, of fully existing in this world, I am always looking for a way to keep dreaming, imagining what if those last few dreams I cling onto and envisage actually come true. The thought then of leaving any kind of legacy might be possible.' 

I have a few (kind of) dreams left, but most have disintegrated now, to save myself from building up to anything again and being deeply disappointed, knowing I could realise them if I was physically well. So now I have small projects to work towards instead, all very short-term because I can no longer see further than 6 months to a year ahead, and that’s being optimistic.

Sadly, with no offspring, for me it doesn’t matter really about a legacy. Truth is my only wish now, for people to see the truth and the true cost of this disease to so many lives. If others could only see and understand too. And that is the problem. Those in any existing family bloodline could also be affected, but it’s still so stigmatised I daren’t even mention it. I will though, if need be and that will hopefully become more apparent this year with the results of the Decode ME study.  At the very least I can direct them here. I will have written about it, with some useful guidance and so they can see they are not alone in the world with it and there are others too, a whole community of beautiful people out there who understand. That will be my legacy.

I’ve already started preparing an LPA because of the further uncertainty around the effects of those of us with already compromised immune systems getting reinfected with SARS-COV-2 and suffering devastating decline. I’m also writing my new will to include a monetary legacy to fund treatment that might benefit future generations as I appear to be at the wrong end of history with M.E. right now, despite it being known as a neurological disease for decades; much like it was at the same stage for those with MS before the science said it wasn’t hysteria too.  So many womens’ health issues are psychologicalised you come to realise, when they could have been treated a lot of the time.

What a waste of productivity, creativity and innovative progress.

Most people who think of leaving a legacy are those who don’t want to be forgotten, or do it for others who have been. 

Those of us with M.E have already been forgotten by many as we (try) and live, so is there any point in us even thinking about that because all we want is to enjoy our life, now. That will be plenty enough. It’s wallowing in yet another luxury some seem to enjoy doing, perhaps.

In terms of helping others, legacies will most likely be in the form of leaving our bodies to medical science, or leaving sums of money (if we’re lucky enough to have it), in our will, to help future generations have a chance of a fuller life, one that we never got a full go at due to the pitiful lack of funding available for our disease, yet it’s one that has a lower quality of life than many that do get more funding.

None of it makes sense.

I like the way the Wintering book includes alongside it the elements, facts and interesting information about nature and specific animals, much like the posts I’ve done about following the seasons rather than time, like those of us with chronic illness do. We feel the seasons so fully from our windows as the passage of time plays out, its sounds and spectacles through nature. And as in Anil and Grigor’s life from the window, watching as those seasons change, when possible; often unable to immerse ourselves in it fully.

The film below, to me is one of the most beautiful and poignant films made about a day with Severe MyalgicEncephalomyelitis. Anil was a professional dancer. I know how it feels to be deprived of your passion too which is why it resonates so much with me. The perception of his cat, Grigor is visible in the moment they share when Anil is able to see some light in the day and they share the moment at 10.55mins. We have a lot to learn about the empathy and intuition from animals in this way.

On the subject of animals, I have been unable to have my own companion. I tried fostering a dog but cannot walk every day so ended up making myself ill over-exerting myself to give him what he needed. I tried again, but the tempremental nature of the second one caused more stress and made me feel worse, so both times it made my health decline physically. Emotionally I was so happy so it broke my heart when I had to face facts. If I had people around to help, this one small joy could be a reality. I even applied to go on The Dog House last year in the hope that there would be a suitable dog out there for me, but I’ve had no response so far so have to watch on as others find their forever friend instead. I’ve considered a cat, but they bring half dead animals in which I’d find stressful (and the idea of a house cat never sat well with me as why wouldn’t they want to be outside running about, doing their wild thing like I want to do)?

So, the spirit of animals become a guide for me and I often see myself as a crocodile, with razor sharp sudden moments of productivity/creativity/activity and then the very still resting state and opening my mouth to the sun whenever it’s warm enough, to help rid bacteria in my mouth in my case (Thanks for the tip mum).

Likening ourselves to an animal still allows us some reasoning and meaning, that we are as we are because we have to be, to survive. This is how we’ve adapted. (I’m hoping this is my text because I’m not sure but just in case: May, 6 February 2020 (p.35/6).

People with ME are super-connected humans to nature and its changes. We take our cues directly from nature because we know it’s in charge here, more so especially now our climate is changing more dramatically. We have often been called the ‘Canaries in the coal mine’ because we are sensitive to changes and fluctuations and that has been made more evident by our environment and it’s ever growing changes; the armies of mutating viruses, technology and so on. For Neurodivergent individuals, it is a similar connectedness, and these aspects often overlap as co-morbidities for people with M.E.

Airborne pathogens will be a continuing narrative for concern no doubt.

Dreams and Living NIghtmares…

The way we sleep (or don’t), and often dream vividly, often experiencing nightmares of being ill and unable to move, or do things like get up off the floor, or being forced to or expected to by others, the bullying that comes from others who haven’t a clue what damage they’re actually doing or have done, enters our subconscious and stays there, haunting us in our sleep, and often waking hours.

I remember when I had a Myspace account I wrote something about my waking life and sleeping life was more or less the same at times, where waking thoughts merged with dreams, and this intesifies as a person with M.E.  Ableism is rife for people with M.E. especially it appears, in healthcare settings where animosity is often felt by those of us with M.E. and this has a profound effect on our waking and sleeping anxieties.

Reality shifts.

So we share our thoughts and dreams online instead, collecting these stories so we don’t feel afraid and alone in our minds for so many long hours spent in an altered state of consciousness; foggy, concussion-like headaches, persistent pain, heads full of cotton wool, cognitively impaired, or perhaps our brain is protecting us as it remains in this borderland between wake and sleep.

Since Covid infections my brain inflammation has increased and I spend weeks in a state of zombie like staring and feeling as if I’m concussed. I have to just go with it because it’s scary and something I cannot fight or do anything about. If I’m put under a lot of pressure this can go to levels where I find coping with the physcial feeling very difficult, as it intensifies. Staying calm and avoiding stress is important but not always possible. Sleep deprivation on top is a recipe for suicide.

Brain inflammation is a very real consequence following viral infections.  New studies have reported spike proteins in the meninges of our brains following the SARS-COV-2 virus. That means the blood brain barrier has been crossed.  We don’t yet know if this is lasting damage (from personal experience I can tell you I’ve had it at varying degrees since onset of first EBV infection in 1995); but it could mean increased risk of dementia and other neurological disorders, especially for those of us with existing post-viral disease. The vascular system is greatly targeted with SARS-COV-2. There are some links about this in the previous article (P1).

Life gets more surreal as it no doubt is doing now for thousands more joining us with Long Covid / Long Covid M.E. which brings with it a host of other stuff we now have to deal with…..MCAS, POTS, Dysautonomia (although many of these a lot of us already had, yet no doctor has cared to diagnose or help us with these for decades because they’ve been taught the BPS model only about our disease), and scientists have revealed that SARS-COV-19 can reactivate EBV (Epstein Barr virus), and other herpes viruses. I’ve also learnt recently about EBV and the connection with MS.

I’m not quite sure what elements of the biological aspect of the BPS model have been explored, as thus far it’s only ever related to psychological factors where treatment has been concerned, as someone with M.E.

Avenues of exploration pertaining to genetics, neurochemistry, physical health, or effects of medication seem to have been left out up until the DecodeME study surfaced. The only medication I’d been offered since being unwell were anti-depressents which made me worse. They did nothing to help with constant viral loads on my body and made me feel more wired. And apart from the harmful GET , the only physical health aspect under the BPS model was Graded Exercise Therapy (link above). Yes, what a scandal indeed.

All fascinating subjects to deliberate over, which I’ve promised myself to try not to do too much of after I’ve finished this article. A lot of this unfortunately is unavoidable until healthcare helps us with it. It’s also part of my research for the project I’m working towards and preparing to write a proposal for, so it all works towards that at least too regarding my understanding of these connections and pathways of disease.

So, don’t take my word for it, here are some of the wonderful people from our community who tell it how it is from the lived experience which I believe is the most important one here.  All the talented driven people strive on as best they can, to prove that they want to live and thrive and feel valued; despite the beast of M.E. that constantly creates the inertia against their endeavours… 

Thanks for reading this far. I know it’s not ideal for people with energy limiting conditions to read so much or take in so much information at once, so I hope you can return to it as and when.  I find a black background helpful for light sensitivity although I’m aware black on white is better for reading, and there are probably certain pastel colour backgrounds that might be more helpful for some.  It’s just the way I designed my website so I could work on it using a dark screen background. I find it less stark and painful.

I’m hoping to be able to find another platform to use to add audio options for those unable to read it.

And as with many other advocates, I don’t get paid for what I do. My health is not regular or consistent enough to secure paid work, or consistently work to deadlines, so I use writing as a way of expressing myself and to utilise my platform in a way that gives me some purpose, despite having to let go of years of building something that might have maintained that purpose for me . Maybe at some point we will be consulted as experts in our field, to help shape treatment for those with MyalgicEncephalomyelitis. For now I’m working on that in my own way with a new project, and maybe even a book at some point. Take care.

Thanks to all the wonderful contributors from the M.E and Long Covid community. You keep me going when I feel so alone in the world. With no one to proof read or feedback I never know if it’s any good or whether I should write less, so I just write anyway, because I am not privileged enough to get the exposure afforded to others.  Maybe one day, all our work and efforts will be seen and used to create a new delivery plan for government, one that finally benefits us. Thanks to those who have fed back on this article so far.

I hope it’s been useful with the many links which often saves me going into great detail about all of these subjects, and certain aspects such as PEM which have many detailed sources of information out there. These will be found via the links or via the people who have contributed and will keep you company too, via podcasts and YouTube TV where you are represented.  I’ve included some graphics created by GoBlueForME which are brilliant. Hopefully you and your friends or family can look when they want to, to educate themselves and help them understand. So please share this as a type of resource if it resonates with you.

Anyway, Happy Lunar New Year.

All I wish for is good health.

And to die peacefully when it’s time.

Some other resources and information you might find helpful :

Unite to Fight offers hope as it amalgamates resources, amongst other independent medical scientists and labs that are doing vital research; and Decode ME

Pempod (latest YouTube edition)

Public Health is Dead Podcast

Here are some of the most reliable sources I’ve found of information to help you to make informed choices and decisions regarding your health (many things people with M.E. have never had due to a pitiful lack of funding for more scientific research studies, which is why we are always having to research for ourselves for so many things to try and help ourselves feel better, and perhaps one day return to being able to live fuller lives again.  There are some great scientists and doctors out there doing some great work on minimal funds and we praise them highly. There are now so many more due to the SARS-COV-19 impact, but unfortunately many are repeating studies that already exist for M.E. so they’re already wasting valuable time we haven’t got,despite having decades to work on M.E. which could have helped people now with post viral from Covid-19.  Shame those in control of the medical science have halted progress for so long. More joined up thinking is needed which is what Unite to Fight are attempting to do, as are Mount Sinai, Dave Tuller, David Putrino, Chris Ponting and his team and more I probably don’t even know about yet.

If you need a boost for the Lunar New Year, start here:

The Red Tree and M.E. 

And to help yourself stay informed:

Looking after your immunity - re repeat infections (AJ Leonardi)

Leave Those Kids Alone - Children Who Mask

Bateman Horne Centre - US

StripyLightbulb CIC

ME Friendly Hospital Charter

ThereForME -Delivery Plan

Mask Bloc Manchester ( also Sheffield and Glasgow that I know of)

Thanks for reading beautiful people!

Madeleine Xx