Welcome!

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 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.

xxxx

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.

https://wp.me/p3pkWr-1Zd

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

https://africaclockwise.wordpress.com

Acceptance.

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.

 

 

Anxiety.

Symptom? Cause? Result?

Or all of the above?

I saw a post in one of the ME/CFS forums earlier today, posing a question that’s probably been asked a ton of times by those still coming to grips with their illness; Does anyone else get really anxious?

And I thought, of course! We have all the reasons in the world to be anxious! We have something for which there is currently very little understanding and no cure and a scarcity of research. A condition that can cause scary symptoms, and robs us of our strength, our freedom, it threatens our jobs, and therefore finances, potentially our homes, it challenges our relationships, family life, ability even to have one, and snuffs out a lot of dreams, ambitions and gifts. It can kill quality of life, severely limit it and lay waste to years of it… yes! Anxiety is a natural part of the package.

Yet this is one of the stigmas about this condition. It’s a sticking point that has lead to further misunderstanding, misdiagnosis and mistreatment, some of it in the extreme.

As if anxiety on its own, weren’t something that ought to be taken seriously, it’s none the less been used to discredit ME/CFS by medical professionals amongst other at times. You’re just stressed, depressed. Well yes! Who the fuck wouldn’t be? But I’m also physically unwell.

Anxiety of course, is an unavoidable consequence of this illness in fact for both psychological and physical reasons, and practical ones actually, perfectly reasonable ones as touched upon above, and in many cases, part of the cause or worsening of it.

Even if you’re one of the more functional amongst us, or have periods of being so, life can still be scary as hell. It’s scary for healthy individuals! Let alone someone who’s default setting is anxiety just because their body is in an emergency state much of the time because it doesn’t have the reserves to deal very well with all that life has to throw, if it can cope at all, plus all the endocrine and nervous system imbalances that come with the territory.

Right now, I’ve a whole list of real problems rattling around in my head that come with this territory, as many others with all kinds of chronic illness are probably familiar with.

Things that come to haunt me at bed time, knowing that there are things that need to happen this week, like: can I pay my rent tomorrow. And by that I mean, can I physically and mentally make that bank transfer and, do I have enough money? There’s a reason I don’t have it on direct debit, because some months, I have to beg or borrow the extra. Some months I can’t face looking at my account until I have to pay the rent.

As causes for anxiety go, obviously money is a big one. Most of us can’t work full time, if at at all and are reliant on some form of sickness benefit, I’m guessing most of us don’t get all that we ought to be entitled to because of reasons too numerous to go into here, maybe that needs its own post… either way it’s generally not enough. Nowhere near it in fact. We fall down the cracks.

I’m thinking; how am I going to get my cat to the PDSA this week? She needs more meds, I can’t get them if I don’t go, I’ve already had to cancel twice. Should I even have a cat right now? How can I possibly rehome her, she’s 18 and nervous and has been with me most of her life…

Will I be able to make those calls tomorrow? I know my other half needs me to and he’s more unwell than me. Will they achieve anything? Will anyone listen to me?

When will I ever get to see him again any time soon? Stuck as we are, immobile as we both are, each in our own way… Will he give up on me?

Earlier I was thinking how lucky I am, to have known such generosity from the odd friend and family, compared to many of us who have lost those connections due to this illness, the strain of it upon others or just the lack of understanding… And how lucky I am to be in a place I love, even when I get sick of not being able to leave it. But this is living on a knifes edge all of the time. I could lose it pretty easily, financially nothing is ever secure, and for people like us in the UK, it’s harder than ever. Even with the small generous actions of others, it might all slip away from me.

I think; is this particular low ever going to lift, or is this it now? Is the treatment not really having an impact anymore?

These things are what’s upper most for me right now, the list can change because some of the challenges do. But we all have one. Yours might be similar in some ways, or not, but they’re all legitimate concerns. And all as a result of being unwell.

I’m also aware that worrying about these things or anything else, will be having a negative impact on my condition, which in itself becomes a worry! And so it goes, round and round.

So what can we do?

Of course the practical day to day things that need to happen that we worry about not being able to achieve, can’t be changed. But can we change how we feel about those things to any extent?

It’s only natural to feel anxious about some of the symptoms we experience too especially as we’re largely in the dark as to their causes. Can this be in any way lessened?

Anxiety is still a symptom for many of us even on those rare occasions when most other concerns are taken care of. (It can happen!) Can we do anything to alleviate that?

I suspect it’s all possible even to a small extent, but I must admit that I struggle with any of the techniques I’ve looked into because, guess what? They take energy. Ah shit!

We are, all of us, by our evolutionary nature, negative biased. It was a useful commodity back in the day (we’re talking caveman here) to be on the look out for danger or threats to our well being or health. The trouble is it’s still a big part of our way of seeing a world in which, at least in the modern day so called civilised world, those threats have changed radically, and this type of watching out for them, focusing on them, doesn’t help us to escape from them or beat them at all. It just serves to amplify our anxiety about them.

But we also know from exploration into neurology in the last few decades, that our brains are very changeable. However, because we’re up against a default setting, it takes quite a lot of effort to make those changes. Plus, the techniques are something we must practise – if to a lesser extent once they’ve become established – probably for the rest of our lives.

I guess I’m wondering, as someone with a condition which makes any kind of consistent practise a bigger challenge, if not impossible for some of the time, if this can be achievable.

Even mindfulness meditation which does over time, seem to reduce general anxiety and improves our ability to handle life to some extent, takes focus and repetition to really see those benefits. Yet I see the value in it.

At the moment, I’m trying to re-read a book called “You Can’t Afford the Luxury of a Negative Thought” Yeah, I know, it sounds like judgement in book form, but the guy who wrote it had AIDS and cancer at the same time as I recall, so I guess he’s come to know a thing or two about anxiety and illness! I don’t agree with everything he writes but a lot of it makes sense, and I believe in being open to exploring ideas even if they feel challenging. It’s the only way of establishing if there’s something of value for you personally, or not. I think it’s a book worth exploring, with no expectations, and to take from it only what works for you, if anything does.

I’ve also been looking into breathing exercises recently as well. They’re interesting and kind of fun to do. A little app called Prana Breath is worth sticking on your phone. It’s easy and soothing to follow, you can adjust it to your own breathing capacity and the effects to a small extent can be fairly instant.

Just like the meditation though, I think it’s the accumilative effects of any of these techniques that really pack the punch. You are’ cultivating’ (think about that word for a moment) a different way of being, Of experiencing your pain, by physically altering your brain. It’s not instant. It’s going to take time and practise.

If you can get on board with that idea, if you think you can stick to it at least most of the time, then I think it’s really worth a go. I find myself coming back to have another stab at some of them, over and over again. Perhaps partly out of desperation, perhaps because I sense that there might well be real benefits to gain. At the end of the day what else is there?

We can’t change many of the things that make us understandably anxious, but maybe we can change how anxious they do make us feel. Even a tiny amount would be preferable. Attempting to do so in no way down plays the reasons why we feel anxious, it just may ease some of the suffering. We have enough of that after all! We don’t need any extra. It’s not in any way helpful. Caution, yes where needed, common sense and realism sure, when you’re strong enough to face up to certain realities that is. But the agonising, that can do one. If possible.

If I make any headway with this, if I find ways of making it easier to weave any of the aforementioned activities into my days regularly, I’ll let you know.

If you’ve your own tips and tricks for tackling your worry monsters and getting them in a headlock, I’d love to hear from you.