Welcome!

Hello. ūüôā

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

Advertisements

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. ūüôā

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.

Video Blog

Since “Unrest” was released late last year, I’ve seen a few video more diaries and blogs popping up from fellow patients, who have been inspired to make a similarly bold step into social media, and show themselves as they are when they’re really in the grips of this condition. The invisible us, the “missing” us. I can’t help but feel that this is a good idea, for the sake of awareness, education, or just to have a voice. In the face of such a painful lack of research and the funding for it, and the general lack of understanding even in todays world , this is something that probably needs to happen way more.

I understand though, that it’s challenging. To thus expose ourselves, at our most vulnerable, is no easy task. It’s still no gaurantee of understanding either, but I do believe it all helps. And so, with that in mind, I’ve had a go!

It’s literally just me talking about how things are at the minute, and what occurs to me as something that might be useful to say about it, just for starters.

I could have got into it more personally, but everyone has their limits. Maybe there are topics I can visit at a later date, that delve deeper, but for now, this is what came out. I hope it’s helpful, I hope it inspires others to do the same if they feel able to. I think we need to be making more noises of this sort, even quiet ones like in this video, even if it’s hardly a whisper, it still counts. YOU count, and so does your experience.

 

Inside Out.

An awareness exercise.

Have you ever sat on the underground, or on a bus full of people and as you’ve looked around surreptitiously at all the faces (we all do it) do you stop to wonder, what that person might be thinking about right now, what they had for breakfast, the last thing they might have said to their kids, or partner, flatmate, parent, before leaving for this journey?

You can take it further, you might like to try and imagine how they’re feeling today. Perhaps you may think their expression will betray that to some extent, or their posture, those little micro signals that we pick up often unconsciously about someone, that gives us some information about them, if we can see past the mask they might wear, or our own blind judgement…

But I challenge you to go further still and get your imagination involved. The next person you have a chance to study for even a short length of time, or with whom you have any sort of interaction, the guy behind the coffee counter when he serves you your drink… imagine that he has a killer headache as he serves you, but that because he has them all the time, he no longer gives out the usual telling signs. He still has the pain, but he’s living along side it out of necessity. The rent must still be paid after all.

Imagine for a moment that the friend you are talking to about your troubles is using all of her focus to stay with your words, because the noise in the cafe that you are expertly filtering out, is jarring to her senses, as is the sunlight flooding in through the window, the constant movement of the passersby is distracting and drawing her tired eyes to track them whether she really wants to or not, and she has to work hard to keep her eyes on you, and her responses attentive enough so that you don’t think she’s just glazing over. Her eyes really want to, but not from indifference, just from the sheer effort it’s taking her to stay with you and not bow her head to the table and just close her eyes.

See that guy stood waiting for the bus with the slight frown, he’s trying to keep standing even though his whole body is screaming to sit or even lay down, the effort to do so when you’re this fatigued is a form of suffering, like being thirsty and there’s nothing to drink and you’re waiting for that to change but you don’t quite know when it’s going to. But even when his bus comes, or you get that drink of cool water, you know that in another half an hour you’re going to be crazy thirsty again and you won’t know when the next glass of water will be coming, just like that guy knows that when his bus stops, he’ll have to get up again, and that sit down has done nothing to refresh him, it’s just momentarily halted the suffering of standing up on exhausted legs.

This is what it is to be out in the world, trying to interact or get somewhere, when you have a chronic deficit in your core energy, or a pain condition or both. We don’t pretend to be normal to hide how we’re feeling, we ARE normal, but we are also dragging a huge weight that we can never put down. It’s all the time, we’re past the point of continually expressing it.

So it’s good to play this game because you will rarely see a sign of it ever, from the outside, it’s good to remind ourselves that this could be the reality for someone, or to remind our friends that this might be going on for us even when we’re laughing with them or sharing a meal. You can still find things funny when you’re suffering, but the pain is still there, laughing isn’t a magical cure, it doesn’t even lessen the symptoms, it just blunts the focus momentarily.

You can laugh and smile and seem fully engaged, and all the while be feeling the continual drag of exhaustion or other symptoms, and being engaged means a constant efforting against that down ward flowing current, all of the time.

Many of our well meaning friends, looking in from the outside, believe that it’s doing us good to be out being social, getting to that gig or to the pub, seeing people. I get that. After all, our condition forces upon us plenty of isolation which isn’t good for anyone. But the sheer challenge of being out, the strain of that environment,¬† generally speaking, far outweighs any benefit, it negates the joy of socializing, or even of being out alone, because we’re having to constantly withstand the strain of being more physical than we really have the strength for, or dealing with all of the sensory input, with a brain that isn’t really up to processing it smoothly and without effect, or talking, thinking, listening… all of it.

In short, no matter how well we might look, or how much we may even be genuinely enjoying ourselves, for me personally, it is always tainted or sometimes it’s down right painful to be there.

That’s not to say there’s no joy in it at all, and certainly the degree to which you are struggling can vary greatly. For me generally, it’s snatches of enjoyment between just…well, coping really. I carry ear plugs everywhere. There are times when even enthusiastic talking in a small group is jarring, let alone a gig or a packed pub.

Unless you’ve ever been seriously sleep deprived, and I mean seriously, or tried to go out with a heavy flu, with the useless heavy limbs, spinning head and all the overwhelmed senses that come with fever, and then attempted interacting with the world in some way, then you’re not going to be able to appreciate the effort it takes for those of us for whom, this state is the default setting, it’s our starting point before you even factor in any extra stressors. You feel weak all of the time, and that makes outside scary, or just really exhausting. It isn’t just physical as I hope I’ve outlined here, a little lie down in a quiet room is not going to refresh us once our tolerance has reached critical mass. Once we’ve burned out our resources, that’s it, game over for the day, and more likely the week, if not longer.

As I’ve said, our capacity for coping varies, our ability to experience joy does too, and ultimately, we know best what we can handle in a day. Most of the time though, we’re just trying to strike a balance with our own tolerance level for each day, even each hour, as it presents itself, and if it’s tough for even me to make the call, it’s going to be impossible for you to.

I think the constant sense of unpredictability about that, and the constant effort of being out of the home environment where one can quickly get horizontal if needed, is why we can sometimes develop a kind of agoraphobia. Only the fear is justified most of the time. It feels dangerous because it is. You’re risking a worsening of your condition, even if only short term, every time. You can’t always rely on past experience to tell you how close to that threshold you’re edging, because that can shift imperceptibly, it can catch you out and floor you when you thought you were doing ok.

Also, and here’s something we don’t anyways consider, we ARE vulnerable. In an emergency, chances are we wouldn’t be able to run away or fight our way out of trouble, so I guess it makes sense that we often feel nervous before a trip because we can’t even defend ourselves against the sensory onslaught, never mind a real one!

And all of this goes on behind the closed door, inside the body and the mind, leaving very few perceivable traces on the outside. It’s really no wonder that people don’t understand, we’re all too busy trying to keep our own shoes on to even think about walking in someone elses. That’s human nature and modern life. But I hope that thinking about the mental exercise I mention here will serve to remind us that so much goes on below the surface that we don’t know about, or can even grasp, as one who’s never experienced it rarely can,¬† It takes a really good imagination. The same can be said for so many invisible sufferings and challenges that people are carrying some of the time, or in our case pretty much all of the time. But it does bring me back to that saying I’ve seen memed about all platforms of social media.

Be kind first and foremost, you don’t know what demons that person maybe battling today… or every day.

It’s a simple enough idea, not always easily applied, but just the idea carried in one’s awareness along with all the other things you carry with you out in the world, can be enough to help us to imagine, or even catch a glimpse of someone else’s burden, and act accordingly, when appropriate.

 

 

 

 

 

 

 

 

Selfishness? Or Self Preservation?

It has taken me a long time to realise this, but what I’ve often classed as selfishness in myself when faced with a challenging life situation that calls for more resources than I actually have spare, is in fact my psyche’s way of trying to save me from it.

The trouble is, it feels exactly the same! And I’ve probably given myself no end of grief for it over the years, and imagined, nay expected the judgement and resentment of others too. The trouble is if you act from a place of an inner sense of guilt, people tend to treat you accordingly, unless you’re honest about it.

We can all have selfish moments at times, we’re only human. But it’s not until I delve below the squirming, guilt ridden ‘ohhh I really don’t want to do this’ feeling, and ask myself – not wanting to aside, are you able? – ¬†that I generally realise, that either I’m in no way able, or I am just about but it’s going to cost me dearly, or, even more annoyingly, I can’t call it, it could go either way and I won’t know until I try to meet the challenge and then the damage is done to my health/I’ll be no good to man nor beast either. The stress and sense of guilt when trying to decide where on that scale I currently fall, is enough to knock me all on its own. The joys of almost zero tolerance to stressors!

I’ve been up against this one A LOT over the past six or so weeks, as my partner has unfortunately had to spend a significant amount of that time in hospital for various and ongoing reasons, and I’ve been mid or boarderline crashed, and unable to travel to where he is under my own steam, let alone be of any use to him if I could get there.

Let me lay out for you what it feels like to know that: his condition is such that being on a normal ward with a general staff, as good and as caring as they may be, particularly one that changes shift and therefore nurses pretty much every day, he’s not going to get all of his needs met. He just isn’t. Fact. That his sheer lack of ability to communicate sufficiently with anyone is not just a frustration, it’s potentially dangerous. When you’re well aware, through numerous hospital stays of his that you’ve been present for in the past, and those of others you’ve supported, and your own experience of hospitals even as an out patient, that the staff are over stretched, stressed and undersupported. You know that his care needs are complex and challenging to get right, and really take a good degree of familiarity with him to have any chance of getting right, a familiarity that just isn’t going to happen in a ward setting or time frame. You know that where hospitals are concerned, he can develope almost a PTSD level of anxiety about being there ( unsurprisingly), and that the number of people close enough to him to know those things about him are few, and not always available, and you, with the best will in the world, cannot get there. Try that on for size.

So when I get the dreaded news, which I’ve had to hear down the phone three times this past few weeks, that he needs to be admitted, I am hit by the same posionous cocktail of emotions. And I have to say that on the top of them is instantly “Oh no, I can’t deal with this”, ¬†straight away followed by guilt about feeling that way, and at the same time, worry about what might be wrong with him, the awful awareness that he’ll be dreading it even more than I am, and lastly, what can I do, who can I ring… what now what now what now…?

I always think to myself, am I some sort of uncaring bitch, to feel that way? But this doesn’t bear out when I hold it up against all the things I have managed to do for him and others, even when I don’t ¬†always feel very able, or it doesn’t feel “heartfelt”. This isn’t coldness, ¬†so much as self preservation. Those kinds of emotions are hugely draining, empathy, care, fear, anxiety, and I need all my energy to cope and make the things happen that need to happen for him, no matter what I’m feeling about it.

I think I’ve always been a bit that way, do what needs to be done first, fall apart later. But I believe this defence mechanism may have become more honed since my illness. It’s not just my own emotional state I’m trying to protect anymore… The trouble is, there’s a limit to what I can do. I know how challenging it is to take care of him. I know at times I can do it short term and at times it brings me to breaking point on every level, more so when he’s in hospital.

So I’m left in this limbo of waiting and hovering on the uncertainty of my own ability to be there, a cycle of guilt and striving and trying and then of failing and crashing. I have to learn to try and get things done via others, on the end of a phone, with my best communication skills, to constantly try to keep everyone in the loop because I know that things go missing in “handovers” between shifts, and there is SO much that they have to try and hold on to… I’m left to wonder what others think of my absense in any literal sense, to wonder if they really understand, if HE really understands when he’s feeling so vulnerable, or if I’m just not trying hard enough out of ¬†the fear that I can’t cope with it. It’s basically a sea of frustration, guilt and anxiety with the added awareness that this alone will be leaching my resources, punctuated by semi respite provided by low dose anti anxiety meds, whilst trying to keep those doses the right side of addiction, something I’ve managed to achieve thus far by some miracle!

You have to relinquish so much control in these situations, just as he has no choice but to do with the staff who are caring for him. This would be easy if they were all furnished with my knowledge of him, my deep understanding of his condition (because it needs to be deep) and the time and energy to really keep on top of all of his needs… but I know that with the best will in the world, this is unlikely the case.

It never ceases to amase me how people manage to be parents with this condition. I can’t begin to imagine… well, I can, and I don’t know how they do it! I wonder how much of these life challenges are keeping us ill for those of us who have the capacity to recover, or are making us worse some of the time.

But you can’t not do life. And you can’t avoid challenge. All you can do is buffer yourself as best you can. Sometimes that does mean putting yourself first, other times it’s just the recognition and acceptance that, even if you were prepared to risk making yourself worse, you just don’t have it in you to do so today.

I guess at the end of the day it’s not selfish so much as self – full. There is this idea that self sacrifice is noble and commendable which it is, but you must be prepared to sacrifice for the self also, in fact, sometimes there is no other choice. ¬†You don’t always get to choose who you put first. When you can be there for others, do so to the best of your ability, when you can’t, accept that you’re going to feel like shit about it, but it doesn’t mean that you are shit, and recognise that the fact that you feel shit about it, is proof that you’re not such a selfish bitch after all!

Update:

My heart and mind are trying to write cheques that my body just can’t cashand it may just break my brain. I could no more do the things I wish or need to do right now than I could get up and walk with two bust legs.

As the need of a loved one grows even greater, my ability to meet that need does not. This is a bleak reality and one that’s hard to bear.

I am aware that even the many calls I am making and correspondants I am sending out to try to get this vast mountain moved, are costing me. All energy reserves have been scraped together to fuel those things, rather than getting dressed, or doing any washing up etc, or eating properly, although to be fair that’s also down to nerves. Those are costing me too, they’re certainly preventing me from being able to get ahead in terms of clawing back any strength. Anxiety eats it for breakfast in vast quantities and I can’t switch it off, not even with the meds.

People say take it easy, they say try to rest so that you can be there, but that’s like asking some one to stick their head under water and breath! These awful predicataments are by their nature, stressful, anxiety making, and energy sapping, even at a distance. You can never recoupe while the worry is there, and it’s there if I’m present at the bedside or not. And we have no tolerance for that, our Fight or Flight response is always turned up way too high to begin with, and each time the dial is turned further, more damage can be done, and more energy lost.

It costs people like me, ¬†perhaps the same as it would some one healthy, who had been physically attending the bedside every day for weeks, or however long before the burn out came, ¬†and that’s even before I’ve set foot outside the house. I’m already in that place. ¬†It’s my starting place. It’s such a useless place to be, although I know that I’m being of some use, and what I’m doing still needs doing as well as his actual hands on care. But it still feels feable and I still feel impotent, and constantly twitchy as I try to think of something else that I can do. The ¬†initial burst of adrenalin that has got me there in the past, is long since used up, leaving more exhaution in it’s wake.

You might think that if I stopped doing all of these things that I’m doing behind the scenes, I might have the energy to go and be by the bedside… oh how I wish it worked that way. The mind never stops whirring, the heart never stops thumping away like a lunatic thing inside my chest, even with anti anxiety meds, and I’m still throttled by my own sense of guilt and driven nuts by these useless weighed down limbs, and a head that swims just on the trip between here and the kitchen… ¬†All of these things only sap ones strength more. It’s the old and viscious cycle.

This is how it is, to be caught between the rock and the hard place. We find ourselves in that spot for all sorts of reasons on the road through this condition, but no time is it more painful than when it involves the well being of another who is currently sicker than us. If only that meant being the weller of the two, made me as capable as I’m called upon to be.

Meanwhile I’m trying to draw lines in a shifting sand, even with what I’m doing I don’t know how much is too much until I just suddenly shut down. And because the sand is shifting, I can’t see how close I am to that line. We can go on and go on until suddenly we just can’t anymore. I fear that happening, I fear reaching the point that I can’t even make a phone call and I can’ feel it breathing down my neck all of the time… it would feel like I’ve just let him adrift. Of course he doesn’t only have me, and my appreciation for that can’t be put into words, but it would still feel that way were I to break my own limits one day. Letting go of this life raft he’s bobbing about in is not an option, but trying to keep myself afloat too is essential. ESSENTIAL. I can’t really gauge how well I’m achieving that at the moment. Chuck us that life buoy for fucks sake!

 

 

 

Don’t Sweat the Small Stuff??

No Molehills, Only Mountains.

Well, this is all well and good, and might occur to someone as a helpful thing to say to a friend who is anxious by default and is struggling to perform even the smallest tasks. I can see the logic.

But were they to dig a little deeper they would soon realise that in our world, there is no such thing as small stuff. Small stuff becomes big stuff, because we become smaller in relation to it.

House Work.

No big deal right? Not the end of the world if it doesn’t get done today. But what about a weeks worth? Or longer? What if like me, you live alone so it’s all down to you, and you can’t afford a cleaner?

I’m not super clean conscious, my idea of tidy would not be shared by everyone. None the less, sitting here on the sofa, watching the grit and the fluff and the bits of food build up on the carpet, it’s not something I find easy to ignore. When I don’t really want to go into the kitchen because I’ve almost run out of room for dirty plates etc and it’s starting to smell… not so great. Or the cat litter really, and I mean really needs changing, because I’ve not had the energy to do so even when it was easier. The cat can go out if she needs to so her well being, if slightly inconvenience, is in tact. But it’s all still there, smelling bad…

My home is Sanctuary. An essential sanctuary for someone who is spending vast swathes of life in a state of¬† illness/convalescence. It’s our clinic, our place of safety, and it needs to be a source of comfort in whatever form that may take. I’ve filled mine, very gradually, with things that cheer me, interest me, create a certain ambience that I find calming or uplifting, whatever I need.

It’s filled with…me. Because I can’t be in the larger world to any great extent. Any creative energy I’ve possessed at any time has been channeled into this space. Creativity, at a slow and achievable level, over years.

It’s full of life in the form of a lot of plants and a few fish, but all of these things take maintenance. You might say, don’t have so much greenery, don’t run a fish tank or keep a cat companion. Live smaller, live in a minimalist environment. Well sure, but whoever that person is that you’re describing, it isn’t me. It’s someone else. I couldn’t thrive in a place so devoid of life. And given that home becomes our world largely, it needs to contain and reflect all that we are.

I have lived with others, good friends who obviously can share the house work. But in the end I actually found it more of a strain to share a space. To share the noise, the sheer presence of another, the interaction that it involves, became more taxing the iller I got. It’s all pro’s and con’s. A balancing act. You have to find the least uncomfortable existence because the condition is going to bring plenty of its own discomforts.

Generally speaking, I’m better living alone, except when things laps into this level of dysfunction, then obviously it becomes a problem. The battle against domestic entropy, as we know, is perpetual. I mention ways that I might tackle it in The Treatments section of this blog where I talk about coping strategies.

Self Care.

Of course, everything takes energy. We’re probably more aware of that fact than most. It’s only natural to take it for granted after all. I did once as well.

Washing, dressing, brushing my hair, cleaning my teeth. Preparing food… further up the scale you’ve got some sort of exercise perhaps. Yeah…No.

I have a little stool in my bathroom so I can sit at the sink or even in the shower, that doesn’t mean I can do it every day though, not at the moment anyway. I’ve made an amazing discovery: You don’t die from not showering every day. I know! Who knew?? However, at some point you need to. And your gums will still start to bleed if you can’t brush your teeth for a few days, your hair will mat, it does it actually does it good to get oily but it will knot up. I’ve managed to avoid that so far to a large extent.

Somehow I have to keep up with the treatment regime on top of these things. Seems like a small thing, swallowing tabs and powders in between food, before and after. But it’s one more thing to do. The counting out of supplements, the measuring of liquids… yet consistency is so vital. I must be my own nurse for the time being. I don’t always manage it.

Dressing is not essential if you’re not able to go anywhere, but a change of whatever you’re wearing needs to happen at some point, if only for the sake of your mental well being. Smelling yourself when you haven’t been able to change or wash for a few days is no fun.

Money.

Oh boy. Here’s the killer. Like many people in my situation, I don’t have enough money. This has never been more true than it is currently. Changes in the benefit system, capping vs inflation, the fact that I don’t qualify for PIP and didn’t for the DLA either despite battles and appeals. It means that I’m on the absolute minimum. I survive because I have a supportive family,¬† and I’ve experienced great generosity from friends and loved ones, most of whom are far from wealthy themselves. Without them… Well, I don’t even like to speculate.

Over the years, it hasn’t got any easier asking for help though. At times it wouldn’t have been appropriate, everyone has periods of financial struggle including those I must at times depend upon. But aside from that, it’s still hard to ask. I don’t feel embarrassed, useless or unworthy, if I fear anything, I’m not even sure what it is, but it’s something…guilt maybe. Also, it’s simply stressful, like anything else that calls for decisive action. Paying a bill even when I know I can cover it is stressful purely because it’s requiring something from me, which would lead, eventually to serious consequences if I didn’t act. It’s stressful simply to exist this close to the bread line, even though chances are I’ll be ok.

Even with the support, recovery, or even the prevention of a worsening condition doesn’t come cheap. Decent food, decent supplements, the phyto -meds. It all feels like a big ask, it feels as though I’m being picky I suppose, that I want the best of everything. But in fact, I’m just trying to do all that I can to be as well as I can, with the tools that I’ve learned about.

When you’re taking money from others, it’s hard not to feel like you owe them a recovery, but this is all trial and error really. Even the most learned doctors and practitioners who actually have an understanding of the condition will tell you it’s hard to recover from it, if recovery is possible in your case. None the less, it remains at the back of my mind when I’m asking for help.

I’ve probably not covered everything here, but you can see my point. Nothing is without some impact, even seemingly small things don’t stay small in the face of dysfunction. They impact the mind too, just the awareness of them, it’s eating away constantly at ones peace of mind, even if you somehow learn to care less about the list of Must Do’s, bobbing about in your head. Ultimately the effects are too tangible to ignore.

 

 

Where I’m At

Slipping Back: The Relapse.

I think part of the reason I finally decided to start this blog Рafter thinking about doing it on and off for a year or two Р was because I find myself since about half way through July, in a place I have been working hard to try and avoid.

It’s obvious to me now – at the end of October and in the same state – that I’ve relapsed to some extent, and properly. That’s not to say that I was perfectly well before that time, or wasn’t experiencing crashes, but when it enters an extented time, in this case months, and you’re not able to come back up to the basic functional level that you were tottering along at before, even one that feels like you’re only just doing so, then I count that as a true set back. It means I’ve slipped back to a physical state that isn’t just a need to rest and claw back some energy from somewhere, it means I’m no longer able to produce it even at those levels.

At the moment, I don’t know what this will mean. I’ve only experienced one consistent long term crash before this one, that wasn’t punctuated with at least days or weeks of respite. One that brought me to the lower levels of existence. As such I don’t really know what to expect from this one. I am hopeful that because I’m already on a regime of diet, supplements and the Endobiogenic phytotherapy, that this might prevent a further deepening of the situation. However, I’m also acutely aware that it may be that the body is calling for a change in that regime, but I don’t have the finances to cover the expense of retesting to see what might have changed.¬† So I and my practitioner are relying on the information in the last set of bloods, and my detailed clinical feedback, to try and hit the right targets.

How It Feels.

How do I recognise a true relapse vs a shorter burn out?

It’s as much to do with the length of time that it hangs about as anything, but there are other tell tale signs for me personally.

A return of breathlessness and palpitations especially in the mornings. By palpitations I don’t mean that the heart always races as such, but it beats harder than normal. You can feel it like a fluttering in your chest that’s giving you a sense of over all weakness, and when you sit still, you can really feel its rhythm thumping away in your chest

The fact that I’m tired earlier at night and sleeping ten hours each time. This condition can turn us into night owls, and ironically we can struggle with sleep no matter how tired, when I’m semi functional this is the case. I perk up at eight pm and can stay that way until late. This is no longer the case. I still get a lift, at least of mood, in the late evening, but come half ten I’m dog tired. At least I’m sleeping better, but it makes no noticeable improvement to my condition.

A sign that I’ve over done it at any time will result in a general achiness of back and head, and it’s pretty instant. It’s very difficult to know what the tipping point may be, given that the goal posts are constantly moving. I think this is why the idea that taking a rest from even something as seemingly innocuous as reading, (if you’re even able to, I can’t always) every ten or twenty minutes, even if you feel ok, is a good practice. One that I don’t use enough!

I can’t tolerate even moderately loud noise and I can no longer listen to music properly. I’m turning the tv down low and adverts get muted altogether! That whole barrage of upbeat music and shoutiness, no way! Music is my joy, and a very prominant focus in my life, so not listening is a big indicator that all is not well. It takes brain and emotional energy to really listen and appreciate it, and I just don’t have it. What I can still find soothing are natural sounds and very ambient music to some extent. I use this site a lot for that reason:¬†https://mynoise.net/

I don’t really have the energy for boredom or frustration, which can be a blessing, but it does indicate that I’m a level down. This is one area where people who don’t understand this illness particularly seem to struggle. They don’t realise how much energy the brain and body needs just to keep us alive every day, and that has to take priority, leaving things like being able to concentrate, process information, or feel motivated, amongst others, way down the list. This really does render our existence far less meaningful, for us more than anyone, but it’s important to remember, it doesn’t mean WE, or our lives have no meaning anymore.

I’m feeling sick and/or poisoned a lot of the time now. My apetite has dropped some and this is a strong indicator for me, given that my tendancy towards hypoglycemia if anything has me hungry fairly often. This is no longer the case. I’ve lost a little weight already but I never seem to get dangerously thin, thankfully.

I have little or no tolerance for even the smallest stressor, like the phone ringing, especially several times a day, which it can do if my mum is having one of her dementia moments. That’s also something else I have to handle that I know is causing a certain amount of strain. I can feel my nervous system reacting, I get ¬†physically jittery inside. Things like the idea of checking my bank account which is always terrifying, can do this too, perhaps not so surprisingly. ūüôā Even a positive or exciting conversation on the phone, or a piece of exciting news can have me shaky and jittery. Excitement and stress are closely linked and I suspect have an impact on your adrenalin levels, especially if your body is using that as a substitute for true energy in times of percieved emergency or extra need. I can tell the difference between the two now.

I know absolutely that I can’t go out at the moment, even if I manage to get dressed. I can tell this by the fact that I get dizzy and lethargic simply by moving from one room to another, or just off the sofa. I know this by how long I can sit upright with no support before I start to tire and feel weak, and I know it purely from experience. The idea of going out seems ludicrous, and this differs from the kind of agoraphobia you can develop over time with this condition. It’s not fear based, it’s your brain recognising quite clearly, that you don’t have a safe level of strength to do so without a big risk of worsening your condition, or worse, collapsing altogether.

There are times when I do have to go somewhere, and I’m able to push it, but this is just like a definitive “No” from my brain and body. I never attempt to push a “no” like that. It would be unwise to say the least. Even pushing it is no fun, outside is loud, bright and demanding of my attention. I can feel weak and out of it even on the electric bike. It’s in no way enjoyable, and it’s hard to appreciate the fact that you’ve managed to do something. This is something else that people don’t always get. Just because we’re out, doesn’t mean it isn’t to some extent uncomfortable to be so, even if it’s a fun outing. We are constantly dealing with a sense of weakness and a sensory overwhelm which pretty much knocks all the “fun” out of it.

It’s also what makes it an isolating condition. I’ve always been happy enough with my own company which is a benefit in this respect, but even I know that over all, it’s probably not doing me any good not to see people for days on end. However, you have to weigh that against how much it is costing you energy/stress wise to see people, because it is exhausting. You somehow have to strike the balance between the benefits, and how much it’s taking out of you. Currently, I can’t tolerate a lot of company. But that aside, this relapse is keeping me from visiting my partner who himself is stuck in a care home, and in no way able to get to me. He’s very far away which also makes it impossible in terms of even getting there. The visits themselves are never relaxing because he needs help even to communicate with me. So this crash is really very unwelcome as far as our relationship is concerned. We’re down to emails and phone calls, and even those can be taxing.

Obviously this causes emotional suffering, sadness and feelings of guilt about not being able to see him or help him much currently. But I’ve really no choice about it right now. We risk losing friendships and relationships this way, but we don’t have a choice about it. We just have to hope that people can understand, and hold out.

Emotionally and psychologically there is a fragility aside from these challenges. It’s no surprise really that if you’re fragile at a cellular level, this will effect everything, including the mind, let alone the impacts of simply dealing with all the things I’ve listed above.

However, when I start to strongly feel frustrated, bored or really seriously fucked off about any of it, rather than just depressed or sad, or a lesser version of annoyance and despair, I count that as a good sign. It means I have the strength feel those things. This is just how my mind deals with it. I know a lot of my fellow sufferers feel that despair even at their¬† physically weakest times. I seem to unconsciously shut it down. Mostly… not always. But I am also consciously aware that despair is not my friend. While it’s natural, it’s also going to worsen my condition. Perhaps this is just the way my mind has developed to deal with it. To survive.

Fighting with it doesn’t actually help anyway. Resignation never enters my mind though. Instead I seem to be waiting, swallowing the meds and waiting to see a lift, a little more strength return, even a little in the way of functionality. There really is little choice. By its nature, to do means to make it worse, the doing must be nurture based only. It’s far from easy! Especially when you do start to lift, because it’s so easy to do too much and slip back down again.

Self dicipline was never something I was good at, even all these years later I’m only just beginning to grasp how important it may be to my recovery, if one is possible. We have to employ behaviours that may not come naturally to us at all. But the alternative may be to remain stuck in this cycle for the rest of my life, and as I get older, that has a deepening meaning for me.

If there is a means by which I can climb out of the well even a little way – and I seem to have demonstrated to myself that some improvement at least is possible – ¬†then it makes sense to be ever more gentle with myself, if that truly is the key. Especially as I know that it has been, and therefore can get worse than it is now. Needless to say, I’m keen to avoid that, if it’s ¬†in any way down to me at all.

Sx