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.