Show Me the Meaning of Being Lonely

Yes, I used a Backstreet Boys song as the title. As if I could resist.

 

 

Chronic fatigue is often described as being a very ‘isolating’ illness.

 

I think a lot of people can see from the outside why it’s a lonely space to be in. The nature of the illness makes it difficult for you to get out and see people – to work, to have hobbies, a social life; all the various parts that make up our lives and which are rewarding most of all simply because they bring us together with other people. Chronic fatigue takes most – or all – of those things away from you, at least for a time.

 

But I think when people look in from the outside it’s impossible to realise what it is that really makes chronic fatigue a lonely place to be in.

 

The best comparison I have is that every day is spent feeling like you’re severely jet lagged and sleep deprived. Because of how exhausted your body is, you don’t actually have the energy or capability to connect with life in the way you would normally. Even when you’re with people, and they probably won’t see this unless they know you very well, you’re not really there.

 

It’s so hard to describe, especially on a lack of sleep (oops), but this aspect of the illness may have been what I struggled with the most. Even when I was with people, or doing things I enjoyed, it felt so incredibly watered down compared to how it was before. I realised the extent to which you need your energy in order to really connect with people. It’s an awful feeling; being with people you love and so desperately wanting to connect with them in the way you could before, but being unable to due to the state your body is in. And I wasn’t too out of it to not be fully aware of this.

 

When I look back on the difficult periods in my life one of the patterns I see is that I often don’t fully process or acknowledge how painful the experience was until it’s passed. Maybe I wasn’t courageous enough at the time to face it, or maybe it’s just the natural way we process our experiences.

 

And so it is also with the last two years. I’m deeply grateful and relieved that I know I’m over the worst of it now. My health is much better, I’ve done the hard graft to get to the stage where doing the right things for recovery comes relatively easily, and I’m able to fill my life with many more of the rewarding things I cherish. Most of all, I’m able to fill more of my time with being around others. I don’t feel so emotionally drained anymore by the experience like I remember feeling. And maybe all of this means that I’m now able to face up to what it’s been like and how it’s felt, because recently I keep having these moments that catch me off guard, and where I’m overwhelmed by the memory of how all alone I felt for the first eighteen months of the illness. Maybe it’s partly brought on by re-realising how beautiful it feels to connect with people, and how magical it is when they open themselves up to you and show you their genuine selves. Maybe it’s the right people or situations arriving in my life to trigger all of this off.

 

I still felt and do keenly feel the distance to others at times, because I can’t relate to the things going on in their lives in the way I’d like to. My life is starting to resemble a ‘healthy’ life, but sometimes it feels like a chasm when I listen to my friends and loved ones telling me what’s been happening. For them, the last two years have been taken up with all sorts; traveling, falling in love, getting engaged, breaking up, finding new jobs, getting fired, discovering new hobbies, miserably failing at new year’s resolutions, graduating, even bringing new little people into the world and so much more. Experiencing beauty, joy, surprise, pain, loss and all else that makes up life’s rich tapestry.

 

A couple of months ago I got caught speeding and naturally cursed myself for being such an idiot. But that wasn’t my first reaction. My first reaction was delight that something had actually happened in my life that I could tell people about – exactly the kind of thing which happens to people living ‘normal’ lives. Something which they could relate to and we could laugh about. It only struck me later how sad this was.

 

One of the things I’m most grateful for with this illness is that as I get healthy again I can connect with people more deeply than I ever used to in the past. There are all manner of reasons for that; like how it’s given me a greater appreciation for how it truly is the other people in our lives that make life rich, and that the more authentically we open ourselves up to them, the more rewarding that connection can be. I’ve also had to do a lot of psychological work whilst I’ve been ill to try to work through any habits or patterns which may get in the way of my recovery, and I think during that process I’ve become a more simple and honest version of myself. I’ve found it easier to form strong relationships with people from that space. And all that meditation binging has no doubt helped me be more present when I’m with people.

 

But all of this has gotten me thinking about how I could have replaced ‘chronic fatigue’ with a number of other things in this blog. There are so many things which block us from feeling that strong sense of connection with others, and most of them are unnecessary. Sometimes it’s illness. Sometimes it’s our own fears, often well-justified by past experiences where we’ve been vulnerable and it’s caused us pain. We all fear that pain, but it’s impossible to live our lives most fully and deeply engage with others unless we accept that pain is an inevitable part of that journey. The last two years have held more than their fair share of pain for me, but I seem to be finding some sort of acceptance towards that; acceptance that pain is part of what makes life beautiful. And if we want to open ourselves up to all life has to offer, then we have to be courageous in that most understated way, and welcome the hurt as well as the joy. One can’t exist without the other.

Two Points for Honesty

Title lyrics: Guster (hugely underrated band)

 

 

So lately I’ve been thinking about honesty; that wonderful but sometimes uncomfortable thing which politicians don’t have to concern themselves with.

 

I wrote a while ago that chronic fatigue is a brutally effective teacher, and it certainly makes an honest man (or woman) out of you. I’ve found that just about any self-denial towards my situation results in my health declining. Most commonly, this is when I tell myself that I’m doing better than I really am and then promptly try to do more than I’m capable of…which swiftly results in being consigned to the sofa (or bed) in some sort of hangover-like state. Sometimes previously I’ve clung onto things that are ludicrously beyond me simply out of denial.

 

It’s not just fatigue. Back when I was doing a lot of mental health work I used to see that being honest with oneself was a massive obstacle. We would discuss how the first step towards recovery was being honest; overcoming that tendency towards to denial. Only by admitting we have a problem can we actually start to resolve it. Physical health is no different – how often do you see people ignore symptoms of something until they’re in so much discomfort that they have no choice but to go to the doctor? How often do people react defensively when it’s pointed out to them (often out of concern) that perhaps they drink or eat too much? Denial is present everywhere.

 

Denial comes to the fore sometimes in our daily lives – how we feel about our job, our relationships, how tired we are… And a lot of us seem to cling on to some degree of denial over our past, and the painful things we’ve experienced. If our dedication to solving our problems was as great our dedication to denying them, we’d be a lot better off – both individually and collectively. That instinct for denial is a mighty powerful force in holding sway over man’s behaviour – arguably rivalled only by the rhythm of Shakira’s hips.

 

In my efforts to recover, I’ve tried to be as honest with myself as possible – about my situation and about all the things (past or present) that might be holding me back. It’s hard. The truth can be awfully painful, and compel us to take actions which make us deeply uncomfortable.

 

It is rather liberating though. Now I can see how exhausting it is trying to present a picture to yourself to others that isn’t really authentic. I used to be terribly guilty of doing this. When something difficult would happen to me I’d basically quash the negative emotions it would make me feel, and feed myself and other people some well-versed BS about how all difficult experiences are simply a lesson, and that I was taking it in my stride etc. Sometimes things are just painful and you’ve got to acknowledge that and allow them in fully before being genuinely able to take anything positive out of it. Sometimes there isn’t anything positive to be taken out of it, aside from merely experiencing that moment with sincerity and openness.

 

Recovery from this weird illness is not a smooth ride. Sometimes I feel like I stagnate, sometimes I feel like I go backwards. Most of the time I’m going forwards. Along the way it feels like there’s been a lot of mini-breakthroughs. Recently I feel like there’s been a shift in genuinely acknowledging what is and isn’t good for my health. I notice how I make lots of small, subtle decisions differently as a consequence, and I feel the way that my body is grateful for it.

 

Something I didn’t expect is how overcoming my own denial has changed my view of the past. For much of my recovery I’ve been quite level – to an extent where my fatigue mentor used to wind me up about whether I was actually human. I used to prattle on about how it was all just one big learning curve, and I that I was basically bossing it (I definitely wasn’t).

 

Once I made the shift to stop bullshitting myself, it became pretty clear I hadn’t been level, but a lot of the emotion had been pushed away somewhere – suppressed. As I wrote about last time out, there have been phases where I’ve felt so so angry. Times when I’ve been furious at my situation, and at all the time I feel I’ve lost to my illness. I recall how it felt …unjust that my body had so spectacularly given up like this, when I had seen so many of my peers neglect their health to a greater extent than I had.

 

They weren’t much fun, those phases, but I always felt better for it after. And it’s such a relief not to be trying to give the impression all the time that I’m totally great with my situation. There are times when I’ve felt so exhausted, so uncomfortable and it irks me that this condition that is causing so much suffering is still surrounded by the amount of scepticism and misunderstanding that it is. At times I’ve wondered how long this has to go on for, before I feel fully healthy again. I hate not having my independence. There’s always a degree of guilt that my parents have had to help out so much financially. In spite of all that…I can accept that this is the way all it feels, even if I sometimes don’t like it. It’s just… human. Looking back, I think for a long time I’ve been trying to be more than that.

 

Being more open about the unpleasant things has, unsurprisingly, brought a number of positive sides to it as well.

 

When you block out some of your experience of the world, you can’t see the full picture. By blocking out negative feelings, you lose some of the positive ones too. The only way I can explain it is that it feels now like my world has more colour – I can see so many more subtle shades I never knew existed. Life becomes richer, more diverse. And I’m more tuned into what I genuinely fear and desire, rather than what I think I should desire. The truth can be very surprising…!

 

There’s still much more to come, and I feel more trusting now of myself – and others.

 

I think a lot of us fear, at some level, that by being totally and genuinely ourselves other people will reject us.

 

They won’t – at least not the ones that matter.

And no flame burns forever

Title lyrics: Tompkins Square Park by Mumford and Sons (listen to it, it’s amazing)

 

 

Do you remember that wonderful feeling when you’ve just finished your last exam? After having had your head buried (or at least, semi-buried) in revision for weeks or months, finally it’s over. For me it was most poignant when I finished my last exam in my final year of university, as it was the culmination of not just the previous couple of months of revision, but several years of my undergrad that preceded it. I remember pure elation, relief and excitement. The pressure, the restrictions…they were finally over. All the things I had wanted to do for those last couple of months but couldn’t (like have some fun again), were a possibility again.

 

For whatever reason, it’s exams that come to mind for me (around May/June every year I start dreaming about revision…still), but I’m essentially just giving one example of many situations in life when we come out the other side of a challenging phase – a busy period at work, the build-up to some big event etc etc,

 

I’d have expected, now that I’m just beginning to come out the other side of chronic fatigue, that it would feel like the example above – the relief, the excitement and so forth. If anything, with this having gone on for such a long time, those emotions would be accentuated. However it’s actually quite different.

 

Whilst I do feel some relief, and some drive to get my life running again…I also feel drained. Obviously I don’t mean that in the chronic fatigue sense – I don’t feel drained physically. It’s more psychological. It’s like I look at the things in my life I want to change – that I now can change – but the get up and go to take action often just isn’t there.

 

When I reflect, it does make sense. It takes something out of you emotionally when each and every day is a big physical challenge, when you’re in discomfort to varying extents near enough all the time, or when you have to explain to someone for the nth time why your life is so abnormal. Living with and recovering from a chronic illness is unrelenting. No matter how desperately you might crave a break, there’s no escaping the discomfort; it’s there each time you wake up and you just have to deal with it. It feels as though I’ve taken a series of body blows over the last two years. Now they’ve stopped coming, but it will take some time before I no longer feel their effects so vividly.

 

In the past I was one of those (probably quite annoying) people who very rarely lacked for motivation. Enthusiasm seemed to be an almost endless resource, and often the challenge was figuring out where to direct it out of the numerous appealing options. So it’s a little odd for me now that I do have the excess energy to turn towards things, that sometimes the motivation is nowhere to be found. I just feel shattered, and in my head I often hear, “what the fuck just happened?” Was that really how the last two years played out? Has it really sucked that much?

 

As I’m sure is evidenced by the rather confused tone of this blog, I’m still figuring this one out. How do I get that motivation back? Such that it’s more consistently present than it is at the moment? The answer probably lies in acknowledging one of the things that got me ill in the first place. Not all of that motivation was healthy. It was too extreme – it pushed me too far. I guess I wasn’t particularly comfortable with…well, with not feeling motivated and enthused about something. I didn’t like to drift – something I’ve had to do a lot of during the last two years. I was almost constantly in a state where I was chasing fervently after the future.

 

The lack of motivation isn’t even across all things. Come to think of it, I don’t lack enthusiasm for spending time with friends or family, or for doing music, getting out and about etc. It’s more for work-related things, which makes sense given how absurdly I overdid this area of my life prior to getting ill. And I’m much more motivated at the moment by spontaneity and flexibility than by commitment and discipline. Again this makes a lot of sense given the context, but it’s not at all what I’m accustomed to. I used to love having all manner of long-term plans in place, like building up to some absurd endurance challenge, and I’d thrive off of all the smaller, gradual steps which would get me there. A plan I’d stick to and work towards, which would provide me with a tangible measure of progress. Right now that seems about as appealing as an evening with Jeremy Hunt.

 

Perhaps I need to just enjoy feeling healthy and appreciate not feeling so uncomfortable or so held back by my physical situation for a time. To let things be easy for a while, or at least easier than they have been. I guess life has been challenging enough these past two years – without my having had much say in the matter. It would seem a little daft to then willingly start bringing in a raft of new challenges and restrictions almost as soon as I finally start feeling good again. What would I say if it were a friend telling me this? Probably to keep things simple for a while, and not to put pressure on themselves. The motivation will naturally come back when it’s time, and for now it’s ok not to feel driven all the time… I might even like it.

 

Happy New Year folks 😉

Don’t make me angry…you won’t like me when I’m angry!

This one’s a little uncomfortable for me.

 

Whilst having chronic fatigue has undoubtedly helped me to be more honest with myself about negative emotions, I still don’t particularly like acknowledging when I’m struggling with something – much less sharing it. Even with the blog I prefer to write when I’m in a calm space and can look at things with perspective. I’ve toyed with writing about this topic for a little while, and ultimately it comes back to me wanting to give an honest picture of chronic fatigue through what I write. If I was being really open I’d have written this a while ago, but one step at a time.

 

So in recent months I haven’t felt down or depressed so much about my health, but there have been a number of times when I’ve felt angry.

 

Actually I’ve felt really fucking angry.

 

Funnily enough, I’ve only started to feel this way since my health has improved. I think in all likelihood for the first twelve months or so of my being ill I was so exhausted that my emotional pallet was pretty dulled. And you know what…that kind of pisses me off too. It’s our emotions that make life rich, and I was too shattered to feel much of anything. Well, except tired. I felt an awful lot of that.

 

But once I was well enough to be looking into moving out, I began to feel really rattled. I didn’t really understand what was causing it, and I was trying to keep it somewhat contained, but I could feel myself getting very easily irritated by all sorts of things. At times I felt like I was losing the plot.

 

When I did move out (this was around 18 months after my health first nosedived), I felt pure euphoria. And relief. Relief that I knew the worst was over – I was on the up and beginning to reclaim my independence. It only took a few days before the relief paved way to rage, which had probably been bubbling away for quite a while beforehand.

 

I can’t say I’d really known anything like that. It was a paralysing. I’m quite accustomed to being able to maintain a lot of self-control emotionally, but this was just overwhelming. I’d be stuck for hours on end feeling absolutely furious and it was something of a blur. I’d stomp around the flat, shouting, hitting things (soft, mostly) and generally having what probably would appear to any Mums out there like a tantrum.

 

The first couple of weeks I was here in the flat I’d feel like Hulk-angry like this once every day or two. After a while it started to happen less frequently, and less intensely. I’d find I could work through the anger by writing, talking or doing some exercise. By giving it an outlet essentially. It actually feels great to let it go.

 

It took a bit of time for me to make sense of it. Why was I feeling so angry now, when things were on the up? It was the combination of the personal significance of moving out to live independently, along with being in my own space without any distractions, and my health being now reasonably good, which enabled me to look at my situation with a startling clarity, and I detested what I saw.

 

Chronic fatigue takes so much from you, whilst leaving you without any clear idea over how long your recovery take, what that recovery looks like, or even any kind of guarantee that you will recover. I think for the first time I saw, with no blinkers, what my life had been reduced to. From being independent, having an active social life, plenty of hobbies and having made some good strides forward in my short career, I’d been forced to spend the last eighteen months in my parents’ spare room, with almost no social life, desperately clinging onto the last vestiges of part-time work and independence, as I spent most of my time asleep – or otherwise wishing I was. And hardly anyone seemed to really have much of a clue about the condition either. I didn’t.

 

Coming to terms with this was rough, as was the realisation that I was never going to get this time back. I remember even when I was quite young I used to ruminate on death (yeah, cheery I know) and I was conscious of how brief and precious our time is. I think this knowledge had driven me to hunger after life in such a frantic way for years before getting ill. And now here I was, having felt powerless as eighteen months of my life slipped away. I’d watched all my friends move on with their lives, going travelling, buying houses, getting engaged…whilst I’d done nothing. Except lie around and try to work out what the fuck my body was doing.*

 

I couldn’t even explain it or justify my position…this condition which for many is viewed as nothing more than laziness.

 

As if anyone would choose to be in this situation.

 

I had drawn such a sense of identity prior to my illness from trying to help others through my work, trying to be a good son, uncle, friend…and all I’d been for the last year and a half was a burden. It tasted very bitter.

 

A lot of people are familiar with the five stages of grief as per Kubler-Ross (Google is your friend). It’s become quite well-known and extends beyond loss of a loved one to loss in any life situation. Once I realised that what I was experiencing was a sense of loss, I started to see and accept the place that anger had in this whole process. Looking at the five stages (bear in mind the first four can happen in any order, though acceptance arrives at the end), I realised that my illness had been dominated by denial and to a degree bargaining (I used to repeatedly tell myself and anyone who cared to listen that the difficulties were worth it because of all the great things I was learning from the fatigue). As for the depression…yes there were plenty of times that I felt low, but never depressed in a clinical or lasting sense. Having gone through a bout of depression as a student I learned a lot about how to manage that and had become more resilient. But sure, my situation made me feel down and I know it often leads to depression in sufferers.

 

The anger though was something else, something I didn’t really expect. Clearly though it had its place and was necessary…though it did leave me even more exhausted. I figure you have to let these stages of loss play out in order to eventually gain acceptance. I’d love to say I’ve found peace with what’s happened over the last two years but I’m not there yet. I feel that way increasingly often, but I still have times when I feel angry – at my physical limitations, or just when my body starts doing more weird shit.

 

I often gets to me when I pick something up again which I haven’t been able to do for a while. Like the first time since getting ill that I got back on my bike, or went on a date, or drove out to visit a friend…each one of these things is tinged with some anger – as each one is a tangible taste of what I’ve been missing out on.

 

I try not to glorify living a ‘normal’ or healthy life. I’m well aware that my friends who don’t have M.E. have their own challenges in their lives, and that my illness has provided me with some experiences I wouldn’t have had otherwise, and which I really value. I also appreciate I’ve had a lot of things fall in my favour with regards to the recovery process – finding the right therapists, support from family and friends etc. And as my health gradually returns I see the value of what I’ve learned from my illness more and more. The kind of intense energy I felt when I was angry now instead makes me want to go out and take charge of my life again. But it hasn’t all settled down yet…I think that’s still a little way off.

 

I’m going to leave it there before this fully morphs into another ‘every difficult experience is a lesson in disguise!’ post which I seem so addicted to producing. I’m already well aware I’m writing this in reasonably good humour, and my sense of humour was definitely obliterated during the times when I’ve been in my rage-state.

 

But look, if someone you know with chronic fatigue is being snappy or irritable with you…don’t take it personally. They have plenty to feel pissed off about.

 

 

….And Merry Christmas. Much love to everyone

 

 

 

* I considered writing here: ‘…except lie around, surrounded by the shattered pieces of my confidence, identity and life’…but it was so nauseating it nearly made me throw up. Part-time career as song writer for emo bands? Do they even still exist?

 

 

 

And a short story about a glass:

So I couldn’t find the right place for this, but it always makes me laugh when I remember it. I’m generally pretty considered, to the extent where even in my craziest rage-state I would avoid breaking stuff.

 

I remember one time feeling particularly Hulk-like when I’d been looking at the glass on my desk for quite some time, picturing myself throwing it at the wooden floor and then imagining the satisfaction of seeing it shattering into lots of pieces. I realised that taking my frustration out on this unsuspecting glass was probably a good thing to do, and would release some of my anger. I stared at the glass for a while longer, made it the focus of all my resentment and eventually let my emotion take over my reason. I grabbed the glass and hurled it at the floor with all the rage I could muster, ready for it to explode in to lots of little pieces. To my disbelief, the motherfucker actually bounced, intact all the way across the wooden floor and somehow made it into my bedroom fifteen feet away. Along the way it had traversed two doorways, changing direction fairly significantly in order to align itself with the entrance into my room.

 

I was stunned, and although I felt slightly humiliated at having been unable to produce any sort of damage to this damned glass at all, which had demonstrated remarkable fortitude and unexpected navigational abilities, it did make me laugh. So I guess the whole incident did make me feel better after all, albeit in an unexpected way.

 

So hurry up and wait, what’s worth waiting for?

So much of life seems to be about balance, in finding the middle ground between two opposing extremes. Rarely is it good for us to go to one extreme at the expense of its opposite. In Buddhism they call it ‘The Middle Way’, and it’s the route we must to take to reach enlightenment (not that I would know much about that).

 

It isn’t healthy for us to be on our own all the time, nor to be constantly surrounded by lots of people, but rather to find something in between. Both planning and spontaneity have their place, but one without any of the other is unlikely to make someone happy. In Buddhism they say that we should neither completely indulge ourselves in pleasures, nor should we neglect our needs. Come to think of it, I have a feeling I even wrote about this somewhere a little while ago.

 

What does it have to do with chronic fatigue?

 

A little while back, when I was a wee university student something unexpectedly clicked one year, and entirely transformed my trajectory. I was given a book written by a crazy and brilliant man called Alastair Humphreys. Alastair decided that he was going to be the first man to cycle round the entire planet. Well, he did it, and then he wrote a number of books about it – including one reflecting on what he had learned from those four years on the bike, which is the book I was given. I was inspired not so much by his feat (I love cycling, but not that much) but by his attitude. There was an unspoken theme to his words, which is that life is short, and that we shouldn’t allow fear to come between us and our dreams of living life to the fullest. Emblazoned across the front of the book was his motto: ‘Got a dream? Live it.’

 

I think at that point I decided I was going to go travelling and live abroad (dreams I’d had for a long while), and also to grasp any other opportunities that came my way, even – and especially – if it meant confronting fears. Long story short, those next eighteen months as a student (and the professional years that followed when I graduated, including the time out travelling) blew me away. I had no idea life could be so rich, that I could experience so much and connect with people so deeply. I would wake up almost every day excited about what was to come, which I didn’t even know was possible, and I was living my dreams. The high was indescribable and I flourished in both my personal and professional life. I largely put this down to this go-getter attitude that I had adopted.

 

It doesn’t take a huge amount of imagination to see how this approach could lead to burnout and chronic fatigue. I hardly ever slowed down, and I didn’t place a whole lot of value on patience. If something wasn’t happening fast enough, then I just opted to chuck more resources at it. It’s fair to say that this caused quite a bit of friction on occasion, particularly in work.

 

Chronic fatigue requires a whole different to mindset in order to get better, and a whole lot of patience – you know, like that Take That song where they seem to be wondering around a post-apocalyptic Earth with their microphone stands? Yeah, you do. Having an intense, grasp-every-moment attitude when you have M.E. is about as useful as a chocolate teapot.

 

It was a difficult shift to make, but over time I’ve learned to be more patient. I’ve realised that when an opportunity comes knocking, and you know you’re not ready for it for whatever reason, it’s ok to let it go. Maybe it will still be there in the future or if it’s not, you can make something else work. Maybe it won’t even be the right thing for you anymore. If your intuition says no, you’ve got to listen to it, even if you know you’ll feel like you’ve missed out. And given the situation I’ve been in, my intuition has said no (or at least ‘wait’) to a whole lot of things I would ordinarily have jumped at.

 

As my energy and health continue to improve I find these two attitudes – the ‘make the most of every moment’ attitude and the one which urges patience coming into conflict. There are certain situations I find myself in where I really want to do something, and I get that buzz out of the idea of doing whatever it is, yet I hear a voice telling me to wait and slow down.

 

An easy example is blogging. After I wrote the first post on here, I then wound up writing a bunch of others but didn’t post them. I really wanted to, especially as the weeks wore on, but intuitively I knew that there were other things coming up that I needed my energy for, so I just had to trust that when the time was right I would start posting again. I’ve never liked just chucking a blog or article out there and then forgetting about it; I like to make sure I’ve got the time/energy to hear people’s thoughts if they share them and to discuss with them.

 

I’ve definitely not found that balance yet, and I still find it difficult at times to judge when to go for an opportunity, and when to be more patient. After eighteen months of largely watching life move on without me, the desire to get out there and really live again can be overwhelming. Allowing that to take me over though would only lead to exhaustion and a setback in getting back to full health, which is ultimately what matters the most to me. At the moment I’d love to be getting on my bike more, or finding someone to do music with (in the four months that have passed since I wrote this…I actually have found someone to play music with). But I’ve only recently moved out and it’s been a busy time with other things, so I need to remain patient. I trust that those things will come, in time.

 

All the meanwhile I’m learning and understanding when to wait, and when to jump. For these eighteen months I’ve been unwell I’ve done mostly the former, and for years before that it was almost exclusively the latter. Living in a way where both have their place and compliment each other is a mystery to me at the moment, but I’m enjoying that journey.

 

Like Alastair said, if you’ve got a dream go and live it. But bear in mind that dreams can take a while to realise, and sometimes if you chase them too hard with too little patience, then they only elude further.

 

 

 

By the way, I finally figured out how to add a ‘subscribe’ option, for those of you who want to read more….stuff when I next post in about four months’ time (the last one was August…). This has got to be the least well-organised and most poorly thought-out writing I’ve ever done. But I guess that’s kind of the point.

 

Anyway, keep scrolling down and you’ll find a bright, red ‘Follow’ button. Tempting, isn’t it? I won’t tell anyone.

Ain’t it fun when you’re always on the run

Wow, a month since my last blog – top effort.

Anyway, I want to talk about fun. Some people have lots of it. Most of us don’t have enough. And rather a lot can’t even remember what it is anymore.

Towards the end of my time in London I was drifting towards the latter, sadly. I enjoyed impossibly large amounts of THE FUN back when I was a student, but then I graduated and decided it was time to become a serious dude. The world needed changing, and there was not a minute to waste. It pretty much went in one direction from there.

I barely made time for enjoying life, because I was so occupied with doing serious super-important shit (at least I thought it was). When I wasn’t working at the college (my day job), I was freelancing, I was mentoring, trying to establish myself as a writer, working on setting up a youth coaching programme and a social enterprise think tank AT THE SAME TIME (what an idiot), and my ‘downtime’ in the evenings or on the tube was spent reading books on climate change, psychology and finance. They weren’t exactly a laugh a minute. Nobody pointed out that reading about where debt comes from is a totally unacceptable way to ‘wind down’. Actually they probably did, but I totally knew what I was doing.

OK, I exaggerate a little. I was part of a cycling club, I spent a good deal of time with friends and loved getting out and about in London’s parks. I’ve come to realise however that having fun isn’t just about what activity you’re doing, but your state of mind. Even when I was out on a Friday night with friends I couldn’t let myself go and simply enjoy the moment, rather I was off in the future somewhere. I felt so burdened by responsibilities and expectations (largely self-inflicted). And I think I was just worn out from several years of building my life around trying to give out to others whilst neglecting myself. The small irony in all of this is that I probably became more tiresome to be around and less of a positive influence on others.

Now that you know the above, it hopefully will sound less absurd when I say that having M.E. has helped me to have fun again, and it’s also shown me how much it matters. One of the most surprising feelings I had during the first six months of M.E. was bliss and freedom. Relief. I simply wasn’t physically able to do all those things I had been trying to do, and it lifted a weight off my shoulders which had grown freakishly large. Now that I was unwell, if all I felt like doing that day was watching the Tour de France (sorry, LE Tour de France) then that was A-OK. No guilt. It’s been years since I would have given myself permission to do that.

There have been other things which have reinforced that fun is just great stuff to have in my life again. The road to recovery for M.E. is best measured in years, and I was quite aware of this from the start. You need to keep your spirits up, laugh and be as light-hearted as possible, as it can be bloody awful to live with. I’ve learned to stay more present, to appreciate things and not surprisingly that’s allowed me to enjoy things more. After several years of city-hopping and a reasonable amount of success in work, it would take a significant event to give me much of a rush. Now I get the same high each time I see friends or family, or meet someone new.

As my energy has come back, more serious stuff has crept back into my life. To some extent this is inevitable; most of us would choose to have at least some responsibilities. If you take living a carefree life to its extreme, you potentially have a life marked by recklessness and irresponsibility. Nonetheless, I have no intention of becoming overwhelmed by it in the same way I did before. I value the spontaneity and light heartedness I have now. There’s a place for seriousness for sure, but sometimes you’ve just got to just sit around and chat shit. Or check out some lolcats.

I don’t believe that life’s troubles necessarily need to lead to us becoming colder, but rather they can actually make us lighter. They can teach us that we’re never truly in control, that we should learn to be carried where life takes us, and that life is so very short, so we may as well appreciate it. Fear and pressure prevent many of us from trusting ourselves, being bold and laughing freely. It doesn’t have to be like that. It’s not so much that life is stopping you from having fun, but rather you’re stopping yourself from having fun. We build up this elaborate cages around our minds and then chuck away the key. Clever.

And contrary to the title, it really ain’t much fun when you’re always on the run…

Thanks for reading. Anyone realise which song the blog title was taken from…? Less obvious than the previous one.

A few words on Chronic Fatigue Awareness Day

Really Important Note: I originally posted this on an old blog back in May for Chronic Fatigue Awareness Day. I copied it here because it’s a more appropriate place for it and you know, some people may even be interested in reading it…

A couple of months ago I stumbled across May 12^th being the date for Chronic Fatigue Awareness Day, and that for 2015 there would be another #May12BlogBomb event. It was a pleasant surprise, as there’s little doubt in my mind that chronic fatigue is a condition which needs far greater public awareness. It also seemed a good occasion to dust off the quill (or keyboard, but that doesn’t sound quite so romantic does it?) and write again, which I’ve not done much of since having chronic fatigue. I’ve still got this old blog, which I’ve not used for ages and which has a title that isn’t even vaguely relevant anymore, but it will certainly do. I figure it’s a good opportunity to add a little more noise to the #May12BlogBomb.

I’ve spent my short career thus far working in mental health and wellbeing, and I’ve seen that chronic fatigue is afflicted by many of the same problems as mental health issues are. To name a few; a lack of understanding, stigma, and the mainstream health system being poorly equipped to deal with it. I’ve seen awareness around mental health issues grow considerably over the last decade, and I’ve also seen how powerful it’s been when people share their stories. That’s all I really have to offer this year for chronic fatigue awareness day, even it feels rather self-indulgent. However, if it creates a little bit more understanding somewhere then it’s got to be worthwhile.

Triggers
This particular story starts with a young man living in London who attempts to fit a two days’ worth of work (sometimes three) into one, cycles to work in the winter rain to save money and generally considers any physical ailments to be irritating obstacles preventing him from getting to where his mind thinks he ought to be. He finds life pretty stressful and difficult – more so than he used to find it.

During January last year, which is pretty much happy season for viruses, he finds himself unwell with what seems to be a generic flu/cold-like thing. Much to his irritation, he gets over one virus, and then shortly after another one arrives. This carries on for a while, until eventually the viral symptoms have gone, and yet there remains a peculiar feeling of exhaustion – as though he’s not slept at all, has severe jetlag and has just run ten miles.

The young man is confused. He returns to work. He gets home, immediately falls asleep and wakes up later on that evening wondering what happened. He repeats this for a few days before resigning to more time off of work and seeing the GP, who promptly diagnoses postviral fatigue. It should pass in a couple of weeks says the GP. The young man thinks that this is an unacceptably long time…

Several weeks pass and there is little improvement. He decides that if he changes his job that should fix things. He goes to interviews and then has to rest for several days afterwards. He then decides it must be the house, so he goes flat hunting and the consequences are very similar. He determines that it’s time to turn to Doctor Google. He follows the virtual trail of breadcrumbs and they lead him to chronic fatigue syndrome/ME. The thought terrifies him, as do the horribly low recovery rates, but each day makes this realisation seem clearer. And he’s getting worse, not better.

At this point he gets fortunate – very fortunate. It turns out a friend of the family works at a clinic set up specifically to help people with chronic fatigue and fibromyalgia. She explains what’s happening to his body, tells him what to do now and reassures him that she’ll help him get over this.

A few weeks later and he’s packed up most of his life in London and moved back in with his somewhat surprised but supportive parents to (attempt to) get better.

Recovery
I remember very little of my first month back living with my parents, but they tell me that our conversations rarely consisted of more than a few words, and I was asleep most of the time. I’m quite sure that the person happiest about the situation was the cat, who now had a full-time sleeping companion.

I do remember feeling relieved. My body felt so exhausted and was craving rest, which was much easier to do now I was no longer living in London. It was not a comfortable position to be in however, physically or psychologically. I felt mentally foggy, physically wiped out and everything ached – this was essentially the case all of the time unless I was completely distracted (thank goodness for Sky Sports). Weeks would pass with me hardly being there, and day to day reality could be pretty bleak. I was very restricted in how much I was able to engage – contributing to dinner for example could be considered a grand achievement.

The psychological adjustment to begin with was chastening and there was an element of grief. I had to let go of my job, independence and acknowledge that any goals I had at the time (finding a cool flat, the perfect job, a nice girl) would be postponed indefinitely. I cancelled summer plans – a trip to Scotland, a cycling holiday tracking the Tour De France and hated the feeling of letting people down. Amusingly, the thing I held onto the longest was the Oxfam Trailwalker; a 100k charity walk that has to be completed within 48 hours. I have no idea what I was thinking in still aiming to complete it and my parents mocked me repeatedly for it. Bear in mind I needed a lie down after a walk down the road to Tesco and back… I guess you have to let go of things gradually.

It didn’t take long though for things to start picking up. I began working with a nutritionist, the chronic fatigue health practitioner I mentioned earlier, and added relaxation practices such as meditation and yoga to my daily routine. The people helping me were, and still are, amazing – I’d have been lost without them. I struck gold with my GP too, who started by giving me the most enormous list of blood tests to check whether there could be another cause. For those who aren’t aware, chronic fatigue is a diagnosis of elimination.

There was definite improvement. My folks said that when they heard me playing the guitar for the first time since I moved in they knew I was feeling better. Indeed, in time I found myself feeling better in myself than I had done in quite some time. I’d been rushing around for the last five years, and the change of pace was actually rather welcome. I guess I found peace with my situation, which is rather more pleasant than fighting it. I also learned a lot during that time, but more on that later.

I was blown away by the support from friends and family, who showed so much understanding. Some in particular took the time out to lift my spirits almost every day, and I’m so grateful. My day to day life was limited in many ways, but I still had those relationships with people – and that’s by far the richest thing. I was aware that some people were quite sceptical about the condition, but to be honest I’ve never gotten hung up on that. It’s a confusing condition to live with, and I’d imagine much more so looking from the outside in.

The last twelve months have definitely seen my health going in the right direction, although it’s been up and down the whole way. The peaks and troughs are less severe now, and the troughs don’t seem so deep or difficult to clamber out of. Different parts of my system have recovered at different speeds. For example my general energy and immune system are pretty good nowadays, but I can’t sustain mental activity (like this!) for too long before I begin to feel foggy and my eyes start struggling.

Each month that passes I feel like I can do more. I’m now able to have a pretty lively social life, I go dancing, I can work a little, I drive to visit friends/family around the country and I’m talking to a couple of places about volunteering. The warmer weather’s even got me thinking about riding my bike again for the first time in eighteen months. All of this really feels magic, and I don’t take any of it for granted in the way I once did. I still have probably one or two ‘bad’ days a week, where I can do little more than just rest and wait for my energy to return, but this is in stark contrast to last year when the bad days were the norm, rather than the exception.

I wouldn’t say getting over chronic fatigue has ever felt easy, but it gets easier. It’s still frustrating to cancel arrangements and to miss opportunities, or to have to wait to do what you’d really like to do because you know your health isn’t up to it yet. You yearn to live a more active, normal life like many of the people around you. Most of the time though the negativity is outweighed by the knowledge that I’m improving, and by how wonderful it feels every time that I get out and spend time with people. I’ve always believed I’ll get better eventually, and the question of ‘when’ has faded away.

Lessons
Chronic fatigue has been a brilliant, if sometimes brutal, teacher. Often the most valuable lessons are learnt in the hardest way, and I’m sure that the difficulties of the last year will be far outweighed by what they’ve taught me about how to live for many years to come. I’m thankful for this. I’d say that I’m now more self-aware, patient, tuned into the needs of my body and more accepting of how things play out. I’ve discovered that even on the extreme days when I’m so exhausted that leaving the sofa is a daunting expedition into the unknown, it’s still possible to feel a very profound sense of joy – perhaps in a song, or listening to the rain, or in a short moment of connection with someone. You can take strength from the fact that you didn’t shy away from the situation; you at least showed up.

Most of the learning has been psychological and spiritual. If getting into a chronic fatigue state is a consequence of our actions and behaviour, and those actions and behaviours results from our psychology (largely unconscious) then it follows that this is one of the keys to recovery. In my case, it was the drive to achieve and help others that burned me out. These aren’t necessarily bad, but they need to be tempered. Going a little further, many of our more harmful behaviours are triggered by fears buried deep in our unconscious. Bringing those up and working through them is not only valuable for recovery, but also for other areas of our lives. There are no dark corners in my mind anymore that I’m scared to explore, and I feel freer.

In addition, a lot of us are dreadful at paying attention to our bodies – I sure was. We’re stuck in our heads, and we listen to our minds at the almost total occlusion of the needs of our bodies. I can count on the fingers of one hand the people I know who really give their bodies a chance to rest when they’re unwell.

Spiritual practice is wonderful for various reasons. It helps keep us calm (stress is the enemy of recovery), aids us in tuning in to ourselves, and increases our sense of wellbeing – not least because I laugh at myself almost every time I attempt yoga. I have the flexibility of a door.

I believe we’d be much happier if we had a stronger spiritual, inner component to our lives. Generally, we’re so locked up in pursuing external goals that this gets neglected.

Final thoughts…
My mind is beginning to resemble what I imagine Homer Simpson’s must be like, so I’m going to tie this up.

Everyone’s experience of chronic fatigue differs in its symptoms, duration and severity. My experience is definitely on the more mild side and that, for me, is very saddening. I was very lucky in catching it early, and in the support/advice that was given to me. I’m lucky to even be able to write this.

For some, getting out of bed and dressing themselves is a good day. I rarely hear recovery stories shorter than about three or four years. I hear many stories where people have had this for decades and have no hope of getting better. I want to give all of those people a hug. It’s remarkably prevalent (estimated to affect over one million Americans), and I can’t overstate the extent that chronic fatigue can affect someone’s life – and the knock-on effect it has on those around them. Yet, it hardly gets talked about and most countries’ medical systems are in denial about there even being a physical component to it. This can’t change soon enough, and anyone with chronic fatigue can tell you what nonsense that is.

What’s stood out to me is how common it is in my generation and age group. It makes you think – why are so many of us burning out in our twenties? I wrote down some ideas on this a while ago, questioning whether this is largely a symptom of modern lifestyles. Research shows that these days we sleep more poorly than before – 42% of us rely on sleeping pills, we sleep on average 1.5 hours less a night than at the turn of 1900, and even when we are asleep we are too wired to enter deep REM sleep. We also work longer hours, are under more stress and consume more caffeine, all of which keeps us in a fight or flight state. Stress-related illnesses are on the rise, as are obesity and mental health issues. Our bodies collectively are creaking under the relentless demands of modern society. I’d posit that those in their 20s, attempting to carve out careers, pay off enormous debts, buy houses and go out partying several nights a week are getting hit hardest by this, but no one is immune. How many of you feel like you need a rest from life?

I’ve just ambushed you there with a depressing couple of paragraphs.

Sorry.

However, the reality of chronic fatigue is not cheery, and we shouldn’t shy away from that. Nor should we bury the positive messages that emerge from it. Recovery is possible – I’ve seen the evidence of that in a number of people. And if not recovery, then it can be managed. Gradually, research is shedding light on likely causes such as reduced mitochondrial activity and immune dysfunction. We’re finding out which alternative therapies work, how to plan our nutritional and what the best psychological strategies are. Plus, the way I’ve seen it give people courage, self-understanding and appreciation of life is quite remarkable.

I believe that we’ll get better at dealing with chronic fatigue, just as we have with other health conditions that were once much more stigmatised than they are today – like cancer or mental health issues. Society will only be better for it.

Parting words of wisdom? If you have chronic fatigue, keep holding on to those things that make life feel worthwhile, and be kind to yourself. If you know someone with the condition, go and show them you care.

Thanks very much for reading, you’re all wonderful. Now go give someone one of these!

I need to have a lie down…

Useful stuff
I thought I’d post a couple of links to chronic fatigue-related stuff which can tell you a lot more than I can.

http://www.meassociation.org.uk/ – An organisation with heaps to offer those with chronic fatigue (or relatives/friends) – information, stories, a helpline, groups etc.

http://www.actionforme.org.uk/ – Similar to above!

http://www.freedomfromme.co.uk/ – Clinic which does great work with chronic fatigue and fibromyalgia

http://www.huffingtonpost.co.uk/2015/05/12/things-people-with-chronic-fatigue-want-you-to-know_n_7263604.html – Article on the Huffington Post acknowledging Chronic Fatigue Awareness Day

https://www.facebook.com/may12th.awareness – the Facebook page for Chronic Fatigue Awareness Day

http://www.michaelppowers.com/wisdom/rilke.html – The Man Watching, a poem by Rainer Maria Rilke about growing from our defeats, which I’ve found very inspiring (thanks Ben)

Mr Writer, why don’t you tell it like it is?

If you’ve known me for a while, then you’re probably aware that I love writing. I began keeping a journal back when I was an angsty teenager that nobody could possibly understand (obviously), and ever since then I’ve found it to be a tremendous creative channel for expression. Over the last few years I’ve had a few blogs, and I’ve been fortunate enough to have a few places publish articles that I’ve written.

If you’ve known me during the last year, then you’re probably aware that I’ve barely written a thing. Whenever I sit down to write, it’s a reminder of the things I can’t do so well whilst I’m still getting over chronic fatigue syndrome/M.E. Whereas in the past I’d find a really clear image in my mind forming of what I wanted to produce, and the words would flow easily, nowadays it feels like there’s a dam slowing that whole process down, and the words reluctantly stumble and stutter out. It’s more tiring than it used to be too.

That said, I’ve decided it’s time to start again. There are a few reasons for this, the simplest of which is that I just really miss writing. Secondly, my recovery is coming along well and I’ve got the energy now to be more creative again. Thirdly, I was really moved by the response I got to the piece I wrote for chronic fatigue awareness day (shameless plug). And lastly…

…lastly I figure that another blog that brings attention to M.E. is no bad thing. The only thing that really bugged me about what I wrote for chronic fatigue awareness day was that it posted too rosy a picture of this condition. I’m a naturally optimistic person, and have always taken the perspective that the big challenges and setbacks which come our way are actually gilt-edged opportunities to learn and grow, if we can only just seem them for that. Whilst that’s helped me a lot with recovery, it gets in the way at times of giving a balanced picture of what it’s like to live with M.E. The day to day reality can get very grim, and there’s something in me which just wants to tell it how it is.

It’s hard to overstate how debilitating this illness can be, and how challenging it is to recover from. What makes this so much more difficult is that M.E. remains shrouded in scepticism, confusion and misunderstanding. Within the medical community it’s largely not even acknowledged that it’s a legitimate health condition (largely due to a lack of clarity over underlying physical causes), and there’s an implicit assumption in treatment options that it’s all in the patient’s head. I’ve volunteered and worked in mental health (where it is largely psychological, although even that is not straightforward) since I was eighteen, lived with M.E. myself and have friends who suffer with it, and I can tell you that this ‘just-sort-your-head-out’ approach to getting over M.E. is bullshit. It’s unhelpful and demonstrates a lack of empathy and compassion – it’s no coincidence that recovery rates are so poor, and yet recovery is very much possible. The taboo that surrounds mental health issues is not dissimilar, but even in just the last decade there’s been a real push to change attitudes, and it seems to me at least to be working. Sometimes now people talk to me about how their mental health is, in the same way they speak about their physical health, which I would have found astonishing five years ago. Yet the friends I have with M.E. by and large feel too ashamed to speak about it. That has to change.

This is the bit where I’m supposed to say what I’m going to write about in future blogs, and round up with some inspiring line about they will transform attitudes and blah blah blah. But honestly I don’t really have a clue what I’m going to write about (making it up as you go along is vastly underrated), and I’m not really in the space anymore where I’m desperately trying to change the world (and have a lively social life, a relationship, be super-fit, have millions of hobbies, save some cats and still be back in time not just for dinner, but to prepare and cook a three-course meal). Actually taking some of the pressure and expectation off of myself (particularly when it comes to helping others) has been one of the keys to recovery for me, and I might touch on that in another blog. Maybe.

I’ve given myself complete license to have some fun with this, and create freely. My second least favourite thing about blogging* is coming up with titles, and so for each blog I think I’ll use lyrics from a song. To be honest it’s quite appropriate, as music has lifted my spirits many a time throughout recovery. You can’t enjoy much when you’re too tired to do more than lie down, but you can still find beauty in a piece of music. The title for this one’s obvious, props if you get it every time.

Surely the best thing though about having a blog about M.E. is the wonderful plethora of possible blog titles it offers. A few that I considered…
Living with M.E.
Me and M.E.
A day in the life of M.E.
M.E.?
Let’s talk about M.E.
What the M.E.!?

I’ve also encountered Me versus M.E. (https://www.facebook.com/mevsmeblog?fref=ts), Why Me? http://www.amazon.co.uk/Why-Me-Alex-Howard/dp/1901447715) and others which I can’t remember….since having M.E. I’d be pretty wary of even taking on a goldfish in a memory contest.

For now though I’m going to thank you for reading and hope that you stick along for a what will be an honest ride. I’ll be back with another blog…at some point.

Byeeeeee

*My least favourite thing about blogging is the technical side of things – making your blog look sexy, working on SEO, reach etc etc. So I’m not bothering with any of that, as you can no doubt tell from the awfully basic site. I picked the theme option because it was called ‘Kelly’, and I’ve not even written an ‘About’ page.