Hello. 🙂

I hope you’re feeling as well as is possible for you today.

Here’s just a brief introduction to this Blog and how best to navigate it. I’ve a lot more to do so you may find a few blank pages to begin with, but do check back.

As the title suggests, it’s all pretty much about and for those of us living with ME/CFS, but also for anyone who wants to understand better, what that even means. Or at least, what it means to those of us who have it, and how we understand and experience it.

Find more info under the heading “About”

“A Bit of Personal History” explains how I came to develop this condition over the years, and what I think the red flags may have been, scattered as they were, throughout my life. I appreciate this isn’t the experience for everyone, for some of you there’s a definite and sudden onset. I think it’s interesting and helpful to see our differences and our similarities in this respect.

You will find the things I’ve learned about the research of this condition thus far under “Research Hub”. Feel free to add your own. Many of us struggle to do this kind of study, so I’ve tried to keep it as simple and as accessible as possible.

“The Treatment” section covers all the things I’ve tried and am still trying, and how they’ve impacted the illness, or not as the case may be. Again, add your experiences in the comments if you’d like. It may be of benefit to one of us, even if it didn’t do much for you.

Any other posts that don’t fall into those categories will appear in the list on this home page.

Mostly, I hope you find something here that’s in some way helpful to you, or lifts your spirits a little, or at the very least, makes you feel less alone with this illness. Amusing anecdotes etc are welcome! Kindness and tolerance are strongly encouraged at all times.

Also, I’d just like to give a little nod in Brian Frouds general direction, who’s wonderfully weird creatures I have shamelessly stolen to join us on this site. Thanks for your crazy and delightful art Brian, as always, it lifts my spirit, which I hope looks at least a little  like one of your creations!

Sarah x

The Nitty Gritty.

I’ve been reading some very honest posts this week, detailing the day to day experiences of living, when you’re chronically ill, particularly with an energy killing condition like M.E./CFS.

I often find posts written as a plea to those who have been ill for years, by those who have been more recently diagnosed, asking for exactly those kinds of specifics, because they’re trying to find their way through it, and we can help each other with that.

This is I why personally find this type of public honesty the most useful of all, in terms of being reminded that I’m not alone with many of the problems that I’m otherwise seemingly dealing with in isolation. Plus, for the sake of raising awareness and providing a better understanding to the (blessedly) uninitiated, it’s essential that some of us are brave enough to get real about it, although I appreciate that’s not for everyone.

I think it’s a more effective reality check than going through the symptoms for someone, or giving them a clinical breakdown of the condition according to the WHO, or their doctor, which doesn’t necessarily nail it for them. You’re leaving how those things may effect you, largely to their imagination, and everyone imagines differently.

I know plenty of us feel a sort of embarrassment, or even a sense of shame about being ill, as though it means we’re weak, or sub standard in some way, as a person. As if we chose this! So we avoid going into details, or we even play it down altogether.

But that’s not actually helpful. It does us no favours, or those who are trying to care for us, or simply trying to understand us. Let alone when it comes to trying to educate the ones who think we’re making it up.

Yes, it’s tough to know the details about the suffering of a loved one, but for the most part, I think family would rather know, than be in the dark about it… For the most part. I’ve read plenty of accounts that make me feel lucky that mine try to support me as much as they do, because it seems that some don’t, or worse…which is awful.

Anyway, with all of in this in mind, I thought it might be useful to write a post that went into details about some of the more every day challenges that we face, and how it feels, and how we cope… On the days that we can.

So here’s what I found myself thinking about whilst trying to prepare myself for a much needed trip to the local shops, and breaking down the process in my mind, I thought it might be useful to list the various stages for you here, but from the perspective of someone with a quarter of the strength/energy of a well person.

1. Wait until that time of day when you’ve finally got enough energy to embark on this journey, IF that happens at all. For me this is usually late evening, around 8pm. OR if you must go earlier, then you’re relying on a rush of adrenalin, should it be available, to get you there. Whatever the case, the following still applies.

2. Drag a brush through my hair, which is tangled because I’ve not managed it for a day or two. Failing this, a quick plate and wooly hat will suffice. It’s going to need a hat anyway because it needs a wash and that’s sure as shit not going to happen before I go out.

3. A quick wash sat next to the sink on the side of the bath. A shower or bath could easily rob me of the energy I’m trying to find for the actual trip. So a flannel and soap applied to the essential bits is my lot. Plus teeth clean.

4. Clothes! Ugh, it’s Winter, which means more layers (especially if like me you badly feel the cold) which means more energy consumption. I remain seated for as much of this process as possible, and I have to take my time. Movement equals wooziness, dizziness and weakness. Remember the first time you got dressed after a really bad flu? That… Actually, just apply that to everything and you’ll be closer to my ball park.

5. Ear phones, the kind that block out most external sounds if possible. To play, quiet calm music to help keep my focus and not get overwhelmed by all the sensory input my brain hasn’t got the energy to process too well. OR to play something a bit more upbeat, still quietly, that’ll help keep me moving and focused, to achieve the same thing.

6. Sit down after putting boots on, sit down again after putting coat on, all the while trying to ascertain if you have the strength for this or not. It never feels as though you do, but it’s whether you have just enough to get out and get back again. Generally, you can’t ever be 100% sure of this, you’re risking it every time you leave the house. Driven more by the fact that you need stuff, (stuff that can’t always be conveniently delivered) than by your ableness. This will also be the time when I decide if I’m going to need meds in order to free up some energy for this trip, although I usually reserve those for longer ones.

7. Once out, I become very mindful. I’m on the electric bike, I’m keeping my mind focused. I’m ignoring wooziness, possibly nausea, anxiety about being out while feeling this weakened and therefore vulnerable, and I’m trying to focus through visual and spacial input that my brain is struggling to keep up with.

8. I’m trying to decide before I get to the top of my road, if I have the energy to stop and talk to my very good friend who works in a shop I go past, or if this will be more than I can manage today. It’s loneliness Vs energy consumption as always.

9. In the shop, having a blank as I try to recall everything I need to get because there’ll be no second trip later for anything I’ve forgotten. Trying to navigate around people, reaching up carefully for things on higher shelves which causes unsteadiness, and juggling goods and money and the bike, and trying to interact without seeming standoffish or rude, because maybe I’m nauseous,or dizzy, or wobbly.

Also, trying not to let that fact make me want to cut the trip short and forget about a few things that I’ll regret not having later.

10. Now, as sometimes happens, but not always, I end up with a system filled with adrenaline, I may have the false impression that I’m able to do more of this being out thing than I actually am if I don’t want to crash like a bastard tomorrow. Very tough this one! It’s that hunger for life vs not risking making my condition worse, which is a real concern.

Or, go straight home and try to wind down. Sounds crazy I know. But that’s the flip side of trying to do things with a body that has a significant energy making deficit, it finds other ways to cope short term when it has to, and that’s usually adrenaline based.

So! That’s just a breakdown of one of the every day things we have to do, although in my case, it’s most certainly not every day.

I shall try and add to the list as things occur to me, in the ongoing intention of this blog to raise awareness and support one another.

As always, I’m interested to hear other peoples experiences of the day to day nitty gritty, if they wish to share. We can learn a lot from each other.


The Hunger for Life.

Recently, I read a post on an ME/CFS forum about ‘pacing’. (For those unfamiliar with the term in relation to chronic illness, it’s a technique for finding your own activity pace, the threshold, above which you’re likely to burn out or bring on a relapse, and then trying to stay below it in everything you do.)

I’ve never really been able to master this, in part because, like many I’m sure, that safety limit can shift from day to day, or month to month. Some one once told me that the signs I’m over doing it are always there, however subtle, that there would be something to tell me… but I tend to disagree. You feel like you’re pushing the boundaries all of the time, because even if you’re a bit more functional than usual, you still feel unwell, and what seems to be spelling “crash” on one day, may not lead to one on another day. I never feel normal even on my better days. So there’s nothing to differentiate from.

This post that I read wasn’t so much about that aspect of the technique, however, it was an honest self acknowledgement of why we are likely, even knowingly, to push ourselves beyond our own limitations. Even those of us who do have a better idea of where their limits lay than I do. It’s not the only one I’ve read that has said something along the lines of “I knew it was going to mess me up but I just so wanted to… be a part of… see so and so… eat the cake, drink the wine…catch that film on the big screen for once… go on the march. You could add a million more of your own, I’ve no doubt.

Sometimes it’s not even a fun or social experience that has us reaching, it can be something like “I couldn’t stand to look at that filthy kitchen anymore… I just wanted a nice hot bath… I’m sick of living in this dressing gown, I wanted to wear normal clothes just for once.”

It’s life actually, the desire, the drive for life itself. Human life and all that it encompasses, be it normal every day life, or something more magical, intimate, enjoyable, creative, meaningful, so much of which is lost to us.

It’s almost become a symptom for me actually, maybe for other’s too. Because when life is denied, the desire to be creative, useful, the need for self expression, companionship, the need to know, to study, to work, it starts to burn. when it has nowhere to go, it will gnaw at you like a frustrated animal. It only adds to the sense of wired but ultimately useless nervous ‘energy’ that many of us suffer with.

I find myself just craving. Craving something indulgent to eat, something beautiful to watch, something creative to try. Anything to stave off the lack of life. And because of the nature of this condition generally dictates large amounts of time spent alone with ones thoughts, there is no real distraction great enough, no TV show deep enough to replace, more than temporarily, that need to live. To express, to Be.

I am very good at vanishing into my own head, always have been. I’ve got a good imagination. But despite how engaging (and obsessive) that can become, it’s not real. It’s not life. It’s not connection with other living beings. It doesn’t stop The Need from resurfacing at some point.

I would go so far as to say that the craving for life can be classed as a legitimate secondary symptom of any chronic illness that significantly incapacitates you for long periods of time. And it does lead us – if we’re even able in the first place – to break from our pacing prisons, risking at best a crash, at worst, a deterioration of our condition. Because we can’t help ourselves. It’s either reach for life, or mentally and emotionally disintegrate a little bit more. Lose more of an already questionable and flimsy connection to life.

There have been times, when I have been too sick to feel this craving. When the smallest of stimuli is enough, if not too much. Certainly, that is almost more comfortable, in and of itself anyway, than this constant and gnawing awareness, of the separation of you from the living world, but it’s no life… it’s just a kind of numbness. It takes energy to have desire, craving, it can get so low that you no longer do, and it’s easier in a way. But for most of us it doesn’t often seem to. Maybe I’m wrong. Have you experienced the death of it too?

I often think about those patients who are all the time bed bound, in darkened silenced rooms. I wonder if that desire has gone to sleep for them the way it did for me at times. Your minds way of saving you, perhaps. Or worse, if it eats away at them just as much. How does one even begin to cope with that? When you can’t even partially escape into a TV show, an audio book, some quiet music… I sometimes think this condition causes the closest thing to being ‘locked in’ to those poor souls that actually are, due to neurological injury.

To be fair, that drive to live, as annoying as it is when you can’t fulfill it, can also be the fighting spirit that gives you the strength to try new diets or home treatments that may help you, or research the self help that could improve your coping strategies. It’s dangerous to be entirely without it…

However, it can become a monster. It can drive you into bad habits that may worsen your condition for no good reason. It can add to the list of things that seem to keep you up at night, make you crave foods you know will set off your IBS or make you feel even more crap than you do already! It can make you reach out for all the wrong things, with the irresistible sense of a rebellious ‘fuck you!’ at its heart. But I get it… I know where it comes from, and there’s really no point in giving yourself more of a hard time when that happens.

I think breaking through our limits is unavoidable. They are so fragile with next to no wiggle room within their closely set walls.

How else do we participate? How do we engage with the world, with people, with life, without pushing ourselves periodically? It seems, for the vast majority of us anyway, that it is unavoidable. Because no amount of rest, leads to cure, for most of us. No amount of abstinence. Pushing ourselves and risking retribution at the hands of our condition, is a part of it. You can’t entirely avoid it except during those times when you’re too ill to move. When you just don’t have the choice. Even then, you can accidentally push yourself just with the thoughts, anxieties, cravings and conflicts that are still going on in your head.

Life, by its very nature, wants to be. In human terms, that means to need and crave certain aspects of it. I’m not sure you can overcome that even with the wonderful Buddhist style of meditation. Even Buddhist monks, the kings of overcoming the more pesky of human desires, get to hang out together and participate in life. More so than we do.

I’d be curious to hear other patients experiences of this deep and difficult aspect of your illness/wellness. How have you Lived? How have you coped with not Living?

Much Love. xxx

M.E. and Menopause.

Because there’s nothing like adding a dash of insult to your injury is there?! 🙂

I think, like many of us, I was already experiencing something akin to what they call the peri-menopause as early as my thirties. A milder version perhaps.

From what I’ve read, this isn’t that uncommon among the M.E./CFS community, (the girls anyway! :-)) as well as those who go into full menopause very early. That could be a coincidence for some, but it would be fair to say that this may well be reflecting the hormonal impact this condition has on many of us.

I recall my first Endobiogenic practitioner remarking, upon reviewing my blood results with me; “It would be really good for you if you could get pregnant! It would boost some of these low hormonal levels nicely.” But that seemed like a bit of a drastic addition to the treatment regime at the time!

Certainly there are some reports of a little respite from symptoms during pregnancy for some of us, while for others, it is downright calamitous, bringing a worsening of one or all ME/CFS symptoms, so it’s all swings and roundabouts, depending on your own personal predispositions etc.

What’s been interesting though, having read numerous posts on forums for those really suffering with peri, and full menopause symptoms, is how similar to a case of ME/CFS they’re sounding. Pain, fatigue and exhaustion, killer anxiety, crazy allergies, nausea, IBS, a weakened immune system in some cases, dizziness, palpitations, brain fog, the list goes on. Most of it is similarly familiar.

These women do not in most cases have ME/CFS, or other preexisting conditions. why are their hormones making them so sick? Surely, something as natural and as normal a part of human and mammal life as this, should not come with such a barrage of ailments. What’s wrong with us all?

I for one am certainly feeling worse as a result. All the achiness, nausea, allergies, dreadful anxiety (if that’s even the right word for it) and that awful sense of fragility are happening either more often or intensely, or both. But it’s different. I’ve had highs and lows with this condition over the years obviously, but what I’m experiencing now has more of an edge to it. I know it isn’t just an idiopathic worsening of the illness. I can feel it. Plus, I know I’m going through the menopause from other obvious signs and blood test results.

What I didn’t expect was quite how much sicker it was going to make me. The thing is, it isn’t just me, or my fellow patients, it’s many seemingly healthy women too.

So back to the initial question. Why are our hormones making us ill? And I mean ill. This isn’t just a vague awareness of the changes that are happening, a feeling that something is different. Forget hot flushes and mood swings, these women are suffering, sometimes desperately, and for years. What’s going on?

Why are our bodies seemingly not coping so well with something that’s supposed to be totally natural? It doesn’t seem right to me that going through this stage of life should be so intense or even debilitating. What’s happening to us?

I actually don’t have any answers, but I think it’s a relevant question in a world full of potentially endocrine disrupting substances, some of which we know about, but, I suspect, many of which we don’t yet.

Endocrinology is a vast and complicated system, as I remember from my own rudimentary studies of it. It’s also the target for most of the regime that I follow to try and improve my condition. It’s a treatment protocol that recognizes the immense influence our neuro-endocrinology has on…Well, everything that happens inside of us.

But perhaps we all need to have a greater awareness of how easily it’s thrown off balance, given that it meets with so many known and likely unknown stressors, every day. In our environment, both inside out, our food, water in some cases, medication… maybe a severe menopause is another red flag that all is not quite as well with us as we think, even before conditions like mine.

In the mean time, it’s certainly an unwelcome addition to my own maladies. I’d be interested to know how it effects other women with preexisting illnesses. I guess the one group or forum I’m yet to discover is the one for those ME/CFS ladies going through menopause. There’s bound to be one, somewhere on the big wide web. For now, I’m off to take more pain meds and brew up some ginger tea! :-/ xx

Christmas: An M.E. Perspective.

Here’s a cliche for you; ” Christmas can be a stressful time…” Hehehe! Yeah well, no shit.

This is true even for those with ‘normal’ health . Love it or hate it, if you’re going to participate at all, there’s a lot to do, think about, and prepare for, both in a practical and an emotional sense. Fun, celebration and warm hearted fuzziness aside, (just for our purposes, I know they’re a part of it too) pressure is part of the package, financial, time, family related in many cases, and health for many. It’s the tired immune system/ burn out time of the year before you’ve even begun.

Thinking back to childhood, even before the M.E. had become properly established, it was often a time of ill health for me, as for many people in Winter. I can remember the emotion of disappointment so clearly, because I was too sick to eat Christmas dinner, or wasn’t feeling well enough to be able to join in or appreciate any of the good stuff, and any family falling out that might occur seems ten times worse when you’re already feeling like crap. I’m sure anyone can remember a sickly Christmas. It sucked!

As someone with a ‘chronic health condition’, disappointment is a fairly regular occurrence, the scope of our lives is significantly dictated by whatever limitations we may be faced with on that day… or days, To some extent, we adapt. But there’s something rather more painful about it during what should be a fun and important social event, like Christmas or a birthday, that harks back to that emotion which we endured as children, at least that’s how I experience it. It is a special sort of sad nostalgia.

It’s not just about missing the social gatherings, the beautiful Frost Fairs and Christmas markets, or whatever else has meaning for you, all of which I love, it’s not just that we often can’t participate (or if we manage to, it’s a strain, especially in the cold) but also that we can’t give as much as we’d like to either, because we’re just not able to.

Guilt, (there it is again) becomes a big part of the experience. Rightly or wrongly, you’re going to feel it, it is what it is. I know, the whole gift giving thing is supposedly not something we should give so much significance to ( although it goes way back) it’s just a material gesture these days, blah blah blah… but the desire to give, in any way, be it material gifts or our time, our hospitality – all the usual things – are extra’s on top of our efforts just to do life. And there is very little, if any resource for them. That can be true any time of the year, but it’s amplified at Christmas.

Money tends to be an issue if you’re not able to work, but even if you have it, you don’t always have the strength to get out and spend it. Yes there’s Amazon… I for one, can’t do it that way. I was always a hands on shopper. It’s one of the things I miss actually. When I had health and enough money, to wonder into town, even the city, and meander in and out of shops, with all the Christmas paraphernalia, twinkly lights etc, when the crowds and noise didn’t overwhelm me, and I could stand on my feet without the exhaustion, in a queue for ages, and just people watch while I waited. I’d just look, and find things that I knew so and so would love, or find useful. I never had an idea before hand, but I seemed to be good at guessing right.

I loved the wrapping and all the creativity that had always featured heavily in our house growing up. I loved the fact that you never knew who the hell was going to be there over Christmas because our mother would invite every waif and stray going. (Actually that was all year round but you get the idea…) That could be exciting… or disastrous. Never a dull moment…

But back to present buying. You can’t replicate ‘the scrump’ online. And hardly anyone ever knows what they bloody want when you ask them, I don’t either. I can’t offer the same Open House that my mum used to, though I’d love to. Plenty of friends can’t or don’t wish to do the family thing, they’ed always be welcome here. But I can’t cater to them… nor do I always have the strength for company, full stop.

Every year I say to myself, I’m going to write the cards and send the cards, and I’ll start earlier this year… but I forget to factor in all the other things I’m already dealing with, in a body and mind that can barely do them. it’s amazing, even after years of this, how short my memory can be about that! And I also forget to factor in that I have more to deal with now, than in my younger years, even before my own health, especially these days…

To an outsider, it may appear that we just need to be better organised. I get that, but you’re wrong. I’m the queen of organised! It doesn’t really make a difference when it comes down to it… M.E. doesn’t have a care for how organised you are. ‘Organised’ does nothing to turn around a crash day once it’s here, or find extra energy to do things when you’re not crashed. You’re still playing catch up with all the other stuff on those days. You never actually catch up of course…

So, as is the rule of thumb, you have to prioritise, with whatever strength you do have, IF you have any to bargain with at all. It’s generally a game of either/or. Because you can’t do it all. (Acceptance needed here, not always achieved, grudging is fine, tantrum if you must, it’ll make no difference to the reality, so whatever you want!)

This year for instance, I chose (because I was able to) to go to the biggest gathering where a lot of friends and my other half would be in one place all at the same time. Even being driven there and back by my sister, it was seriously pushing it, especially as I had been taken to see Himself just a few days earlier for a few hours. I had to medicate myself to achieve it, in the full knowledge that it would likely cause a bigger fall out. It was loud (ear plugs on person at all times) It was emotional. That all costs. Even fun costs. Joy costs. I have no doubt that to look at me that night, you wouldn’t have seen my internal energy credit rapidly dropping down from pounds to pennies and then to zero, in my eyes. (Like in the cartoons) But that’s what was happening. It was already a false economy, borrowed time afforded by meds.

This is still a win though. Most of the time, medication does not guarantee any such result, and even when it does you have to factor in the fall out. So this was my Christmas, because that’s in all likelihood my lot now. I’ve been burned out since, and was on the way to it before hand anyway, so I’m guessing I’m done. Stick a fork in me etc.

This means forgoing visits with family and any other friends in all likelihood. Yes, they could come to see me, but interaction still costs. Especially when your mum has dementia and may ask the same questions twenty times in ten minutes (bless her).

I could get really bleak here, as I doubtless have in past posts, and talk about just how much this thing dictates your ability to be there for people, be they dementia’d or downright dying, because it really does, and we are haunted by it… but it’s Christmas so I’ll stop there!

I do find myself reminded though, at this time of year, about all of those dark and horrible things. Because we’re all thinking (some of us with dread, others with sheer excitement) about being together. It’s cold! Dark… It was the toughest time of year not so many hundreds of years ago. Sickness, famine and mortality loomed large. (Still does in some places…) It’s, probably literally, in our ancestral DNA to want to draw together on the darkest nights, and find some humour, comfort and light in each other until the sun starts to claw back the colder months again.

I still feel that. Any sort of spiritual meaning aside (which I for one, don’t really have in a religious sense at least) I relate to that basic desire. It’s just much harder to achieve now. For me, for others like me. So we have to find it in small ways I suppose. Like with every – bloody – thing else! Otherwise, Christmas becomes too much about loss. As always, where possible at least, it’s an exercise in trying to find something in it, to try and get the smallest thing out of it, and appreciate the living crap out of it when you do.

It’s about hoping that those close to us, are able to understand our limitations, and appreciate that our desire to join in, if largely unrealised, is still very much alive. That understanding alone is gold, it’s a blessing, to both parties, actually. Clarity. Empathy, or when you can’t relate, simply compassion. I have HUGE gratitude for those around me who do get it, and who also know that I would, if I could, do more of this Christmas nonsense with them. 🙂

So Happy Fucking Christmas! I wish you all the best that you can squeeze out of it. Well, or sick.


M.E. Too or Why I am No Longer NOT Speaking to Doctors about Chronic Illness – A blog by Sam Sampson

I just have to share this amazing blog written by Sam Sampson. To my mind it’s every bit as worthy of attention as Jen Breas film Unrest, for it’s detailed well researched content (full of useful – see for yourself – links) and deeply personal account of living with chronic illness, and the plea to our potential allies. Who will stand with us/for us?

Beautifully written. I salute you Sam and family, for all that you do.


Here is the rest of what they’re doing. 🙂



I find it interesting the mixture of feelings this word can stir up in the face of anything truly challenging. In this case, a long term, little understood, health condition. I’m not just talking about acceptance from self either, but from others too, and that throws even more difficult emotions up for us to try and come to terms with.

In relation to the desired – and where medical professionals are concerned, much needed  – acceptance from others about just how this illness effects us, how serious it can be, it touches on all sorts of horrible insecurities we may be harbouring already, about our self worth, others expectations of us, our value in the world  as a person who can’t “do”or “contribute” to society… ugh! It’s really not an easy place to be, knowing as I’m sure most of us have experienced to some degree, that there will be some people who don’t get it, and some that never will.

The instinct is to chase them with the facts, to find a way to communicate to who ever it may be, your reality. The trouble is, that doesn’t always work. Some folk are better at climbing even momentarilty, into the shoes of another and some just aren’t, or they have too much of their own battles going on to be able to afford it that kind of focus.  Or, all they see is your insecurity and they react to that instead of what you’re trying to say. As mammals, we all do that to some extent. We’re wired to judge, often wrongly. Some can get past that, some can’t.

I do wonder, when the inquest is heard into the death of young Merryn Crofts next month, and they should conclude that she did actually die from her ME, if this will have any impact on how people view this illness, and whether they might take it a little more seriously.  Her’s won’t be the only death but it’s one of the most publicized currently, because she was only 21. At the moment, officially at least, we don’t know how many lives it has claimed aside from suicide. The studies haven’t been completed yet. Even if the number is small, this is something else we ourselves will need to come to terms with as well. But it may at least shine some light on the need for research, and give the doubters something to think about…

If anything, the challenge for us is to somehow be able to let it go of the need to be understood. Here, it’s us who somehow need to accept that there will be some people who just can’t really get their heads around it as fully as we need them to. Big problem when that person is your other half, or members of your family! I’ve read some heart breaking stories along those lines. I’ve had my share of people not getting it, but mostly, my family do, even now that my mother has dementia and I have to remind her every time I talk to her if she asks, she still responds with empathy, and asks for the millionth time ” But isn’t there anything they can do?” Bless her!

In this respect I KNOW I’m blessed, but that doesn’t make it any easier when I do meet with a lack of comprehension, or even judgement, from anyone else, be it doctors or friends. It is very hard to accept. It is very hard to feel that you’re in all likelihood being misunderstood. It’s one of my pet hates. If anyone needs to find a way to be at peace with that one, it’s me! But I don’t doubt that we can all relate to that feeling at one time or another, it’s an extremely common human malady, sick or well.

Then there is self acceptance. Acceptance of our conditon, and of it’s limiting effects on our lives, acceptance of unpleasant symptoms and pain. It’s actually far more important that it comes from us than from others, at least in terms of not giving ourselves a hard time about being sick, but far more challenging to accept it’s strangle hold upon us. To accept our limitations minute to minute, because they can change on a dime, is also pretty tricky. But to push beyond them can be dangerous for some of us, so we have to at least try.

Let’s just remind ourselves here that acceptance does NOT mean resignation. It doesn’t mean giving up. Although sometimes it takes a sort of giving up to really let go. Often people will say that it was when they reached their darkest hour and finally stopped fighting something, that, rather than the monster winning and swallowing them whole, they found instead a moment of peace. The monster doesn’t disappear, somehow you’re just not afraid of it anymore… this can be a permanent shift, or it can come and go. I tend to find the latter is true, for me anyway. At times I can accept things, other times I’m raging against it like it’s the dying of the light! There’s a place for both.

So, to accept is not to give in, be it either self acceptance or the acceptance of others. It’s about being with, rather than trying to do something about I suppose. Sometimes you can find small moments of enlightenment about yourself when you stop reacting for a moment and just accept the desire to. Sometimes it can teach you some useful insights.  But not every time. Something else to accept. 🙂

One of the other things that makes acceptance challenging with this condition is the sheer lack of knowledge about it, and therefore its predictability. This is true on a day to day basis experiencially anyway, it’s very hard to predict even for those of us who have lived with it for years,  but also from the medical establishment, and the very nature of the thing, case to case. For some, it’s severe from the get go, Whitney Davis severe. If you don’t know who that is, here:

(I can’t begin to imagine how Whitney can find any kind of acceptance in his cage. I can only hope that like many of us, some of the time at least, he just moves one moment to the next and is able to find some escape deep inside of himself, because that’s the only place he’s got to go.)

For others, it becomes severe because they’ve pushed themselves too hard, usually because they didn’t know not to, or where the limit was. None of us are clear on that because the boundaries can move, day to day, year to year.

Even for those who are able to semi function, or even work, this is something we have to be constantly aware of, and there’s no way of telling quite how far we can go before we accidentally break. It can take years of self study to master the warning signs, and then the goal posts are shifted by something on the inside and you don’t know where you’re at again!

It’s harder to accept something so unpredictable, because you’re often having to accept shifting levels of funtionality or differing symptoms as time goes on, So just as you think you’ve adapted, you have to start all over again.

If you do manage to get a fairly consistent handle on it, sooner or the later, the question that naturally arises is, right, can I actually recover from this? Can we actually get well? Do we dare accept that as a possibility?

I include this under the heading of acceptance because, just notice how you feel in responce to that question if you’re some one who has been unwell for a very long time despite your best efforts. If you’ve seen those posts on social media from some one who got well through research and self treatment (it generally has to be self treatment because, here in the UK at least, there isn’t anything else) and they’re trying to share their wisdom with us so that we can do the same, does a part of you feel defensive? Is your first instinct to think that it’s got to be a scam? They do exist after all. Even me, who has never given up on the idea of recovery and has always thought it possible at least in my case, I have to say a part of me squirms. As much as we want to get well, this idea can actually be hard to accept.

Here’s my theory as to why. We spend so much focus on having to prove to people, our doctors, the benefits agency or our bosses, even those we are closest to, the world in general, that this is a bonified serious real life condition that deserves way more understanding and research funding than it’s currently getting, that to suggest that it can be self cured,  somehow suggests that it’s not really all that serious, especially because most recoveries are self administered without much in the way of medical intervention. (Again, this is because we don’t really have a choice, even under a practitioner like Dr Myhill, you’re mostly self treating at home.)

Let me put it in perspective for you right now. Cancer is in many cases serious, it can kill you, but people can and do recover from that albeit with drugs, some without on occasion. That it’s possible to do so, in no way detracts from how serious and deadly it can be. The only difference is, there are medical treatments. So why should suggesting the same for ME/CFS feel the way that it does? Because we know that, unlike in the case of cancer, I think it’s safe to say, there will be those saying: ha, see, ‘so and so’ got over it all on their own, so why can’t you?

I want to quickly say here that I don’t automatically believe it is definitely possible for everyone to be cured, at least not without serious and effective medical intervention and that doesn’t exist yet. That in itself is hard to accept, especially for those who are severely ill. But for some of us, yes, it may be possible. Not easy, but possible. Yet we’re so used to being judged that we can actually feel guilty for feeling better, as if we’ve been faking it all along, let alone accepting that we might even be able to break free altogether. This is the joy of having a controversial and little understood complex conditon, that frankly is going to take a paradigm shift from the medical establishment before they will get a real Big Picture grasp on it and how to treat it!

However, to those of us for whom it’s even possible, it’s pretty tough. We have to accept (there’s that word again) in some cases, more (and often further limiting) changes to our lives, diet and habits, that may or may not help our bodies to have a chance to gain some ground rather than be constantly up against it in the energy stakes. It generally costs us more than we have to spend on it, and it’s going to take a couple of years if we’ve been ill for years, based on the approaches I’m in any way familiar with anyway.  And, it might not work for us. We might not be one of the lucky ones.

It’s a lot to take on. A lot more acceptance needed. Oh God, I don’t think I’ve got any acceptance left to spare!

You can see how key acceptance is then, can’t you? For all aspects of this situation. You can see why so many of us are meditating like lunatics to try and find some! I have to say though, that’s not bad advice, it works for many. But find it where you can, however you can, whatever works for you. And accept that fear of judgement is natural, but it doesn’t mean that anyone is right to judge, or that they have good cause. They don’t. No one has that right who hasn’t walked in anothers shoes, and even then, it’s different for everybody.

Accept the fear, and keep doing what ever you need to do to survive DESPITE it. Sooner or later, the truth of things wins out, maybe sooner if we stop apologising for it.  Maybe sooner if we accept it as much as we can for ourselves, and accept the days when we can’t as well. Maybe those around us will be less quick to judge when we quit judging ourselves quite so harshly, and are just calmly honest, about everything and without apology.