Bad Days

It's the morning after the day before. I feel like I've relapsed. Yesterday was not a good day, it was one of those days that I just needed to get through and consign to the dustbin of history. I hate this feeling, it's similar to when you have woken with the mother of all hangovers. As you fight to peel your eyes open everything aches, every movement takes so much effort and deep down there is the dull ache of guilt, of regret. What have I done? Why did I let myself get like this? It had all been going so well up until now.

This has nothing to do with alcohol or a big night out, I was in bed by 8pm last night. No, yesterday I simply felt tired. This though is a different kind of tired. It’s the kind of tired that clubs you over the head leaving you dazed, confused and unable to carry on. The kind of tired that takes you over completely, that tries to shut down your systems, that tries to stop life in its tracks.

It happens every couple of months, a few days where the tiredness takes over and controls me. Most of the time I can fight it, push it into the background, try to ignore it but every now and then fatigue creeps out of the shadows and envelopes me, showing that it can still dominate my life, making me shuffle to its muffled tune.

I know that often, there's nothing I can do but it feels like my fault, I've fallen off the wagon, all the coping strategies and the processes I've invented over the years to keep the M.E at bay have failed me.

No matter what I do, no matter how many new strategies I invent, the tired days still happen, they are still part of my life. As I get better at coping with my M.E, as I start to work myself and the illness out they are becoming less frequent but they always catch up with me eventually. They are reminders of what everyday used to be like, of how my life used to be. Each of these days is like trip back in time to a world that I was hoping to leave behind.

Like thunder clouds on the horizon I can often feel the tiredness coming. It's seems crazy to think those dark brooding objects of pessimism, way off in the distance, may eventually catch up with me. That I will end up caught in the rain when I’m currently basking in the sun. Denial sets in, the eternal optimist that resides inside me says that the wind will shift, that the oncoming clouds will be blown off course.

If I were a bit more of a pessimist or maybe what some would define as a realist then I would possibly be able to take heed of the warning signs, I could then prepare for the tiredness and it wouldn't soak me to the skin. Maybe if I did a bit less, stopped saying yes to so much and took a few early nights I could blow the clouds back over the distant horizon. Maybe I could prevent the tired days from being so bad or maybe even avoid them all together.

Try heading home though whilst the sun is still out and you are enjoying the charms of summer. It's an impossible thing to do. Why would you give all of this up? Why would you pack up the beach towels in 25 degree heat just because it might rain? The eternal optimist that thinks the rain will never hit, wants to make the most of the sun, squeezing every last drop of enjoyment from it before the storm hits. And so it's the same with my M.E, by making the most of the good days, by ignoring all the signs, by doing as much as I can when I feel good, I fear I make the bad days worse.

I've slept, that is to say I shut my eyes and lost consciousness but it seems to have done nothing. If anything I'm more tired than I was last night. It's a horrible feeling waking up like this, one of utter defeat, any of the last remaining positivity, any belief you had last night that today would be slightly better had been shattered. You are resigned once again to getting through the day and hoping that sleep will do what it's supposed to later in the evening. Your first thought after getting out of bed is when you can get back in it again. The oncoming hours become a test of endurance, days like these feel like walking barefoot over gravel.

In a way I guess this is a kind of hangover. Rather than alcohol being the contributor to my current state I have just overindulged on life. I have been enjoying too much of a good thing over the last few weeks, I didn't know when to stop, and so I am here now, staring at the ceiling, feeling sorry for myself, dreading the oncoming day that is now imposing itself on me.

On these days the M.E is back in control, rather than fight it or try to deny it exists I have to acknowledge that this time it may have won the battle but the war is still ongoing. When I am feeling down and defeated I have to remind myself that I am winning the war.

Stand completely still on a tube station at rush hour, this is how normality feels on the bad days. Everyday situations seem to happen at a million miles an hour, everything seems to happen around you in fast forward, it becomes disorienting, you can't take it all in, you can't grasp much of what is going on. Other people seem to be operating on a different level to you. To join them and participate in society seems like trying to jump on a roundabout that is already spinning. Sometimes you can just about hang on, other times it spits you off leaving you to nurse your bruises and try again another time.

On these days I feel broken. Its as if I'm not quite there, I feel disconnected, unable to properly interact with people and feel part of what is going on. It's like watching the world through a window, like someone else is pulling the strings, I am going through the motions but I don’t feel in control.

I feel uncomfortable, unable to grasp at words, It’s an effort to join in on conversations. The normality of the world becomes too much to take in and everyday situations become stressful. Even simple decisions like what to eat play on your mind.

In situations like this I hate admitting defeat it’s the last thing I want to do, I have to keep on fighting, it's what I am used to doing, to do anything else feels like letting the M.E win, like admitting I am weak and a quitter.

If I make it look like I am alright, if everyone else thinks I'm alright then maybe I can convince myself everything is alright. On these days I feel like I am trying to portray a construct of myself, I am trying to act out the person I want to be. All may look fine on the outside but it is the veneer of normality the projection of what I want to feel and what I want to be, beneath the surface I feel like I am breaking, like I'm falling apart. Often when I am that tired I struggle to feel anything at all, emotions seem to take too much precious energy from me, when I am this tired I feel completely empty, the black of M.E has consumed me, taking my humanity away from me. When it’s really bad I am left as an empty, emotionless, shell, a hologram which has stepped in to take over the basic day to day duties of being Tom.

You would think that I could use the experience to learn for the next time, that maybe I could see the warning signs and back off. There are three reasons this never seems to happen. One, the eternal optimist in me is a stubborn bastard, every time I start to feel the faintest bit of tiredness it tells me that maybe this time it won't be so bad, that maybe this time I can cope with it, that the bad days won't be so bad.

Reason two is down to my attitude towards the illness. After so long being ill, being practically housebound dreaming of a world I couldn't touch, the good days are to be cherished. They are to be used to their full extent, they are days my teenage self would have given anything for. To not make the most of them seems like an incredible waste, like throwing perfectly edible food into the bin. Why would I compromise these days? Why would I purposely make the good less enjoyable just to enable the bad to be slightly better? Why downgrade something amazing to just ordinary so that the unpleasant can become slightly more tolerable? I would rather make the most of the good days.

So in a way I see the bad days almost like a penance for the good days. There has to be some payback. To enjoy the good days and the lack of tiredness as much as I now can, I have to expect to suffer the odd bout of tiredness every few weeks.

The third reason is that sometimes life just doesn't allow me to stop. I have to work, there are often things that need to be done I can’t put off, I can’t just take a day off work because I’m ‘tired’ I have to keep pushing through even if I know it will hurt a few days down the line.

It's now a few days later and the rebuilding begins. The storm has passed through, the skies are clearing and the damage is being assessed. It'll take a bit of sorting but in a week or so I hope to be feeling back to normal. I am now back in control and can leave the M.E demons behind me.

So hopefully today will be better than yesterday, the tiredness will lift and I can press the reset button and start again. Yes, the bad days are pretty crap but it is from these days I can learn most about the M.E.

By analysing the bad days and learning about what made me this tired and I can hope to come up with new coping mechanisms and strategies that may hopefully defeat the tiredness at some point in the future, or for the very least try to put it off for a few more days. The bad days need to happen, in a strange way these are the days which are helping me to get better.