What's up Doc?

It’s been a while now. Normally my crashes seem to last a couple of days. This time though it’s been weeks going on months. I just can’t seem to climb out of this hole and get back to normal. I think I’m getting there but then a busy day seems to drag me back down again. I’ve still just about got through my days at work but everything else has been a write off as I spend endless hours trying to recover. It’s given me time to think, probably too much time to be honest.

I've recently been trying to class my M.E. I’ve always struggled with how to tell people about it and how to describe myself. I've tried saying to some people that I am better and to others that I still have M.E but both don't really fit my situation.

How can I say I'm still ill when I have been able to run marathons but then how can I say I'm better when I have weeks like last week, when I'm so tired I feel that even moving and speaking are an effort.

I think the best way to class my illness is to say that I'm in recovery, as with every recovery though, progress is not a constant. There is no linear graph showing a straight line of improvement, instead there are ups and downs. A two steps forward one step back type of thing.

The last few weeks though have felt like I’ve been stuck in reverse, free-falling back down the graph, back past all the progress I had worked so hard to achieve.

It’s never usually been this bad, it never usually lasts this long. Normally after a few days I can see the light at the end of the tunnel, but this time it’s just kept on going. To say I’m frustrated is an understatement. To be honest I’m slightly scared, questions like, what if I don’t recover this time? keep on dancing round my brain, taunting me.

So as a last resort I did the thing that I always hate, after weeks of feeling shite I went to my local GP. Almost twenty years after I first ‘troubled’ them with my M.E, I thought, or rather, I desperately hoped the world might have moved on. That after years of trying to work this thing out on my own that someone else may be able to help out, that there may be some new research I hadn’t heard about.

Sadly I was to be disappointed.

While describing my symptoms I was met with the same disapproving look, the one that told me I was just a faker, a time waster who was just over reacting to feeling a bit tired. The look that told me I should leave now and let the surgery deal with people who are really ill. Those who they can actually prescribe something for.

The anger slowly built

After I was finished I was met with the line ‘so what do you want us to do for you?’ before being told that exercise might help me.

The anger now took over.

I was now in a time warp, transported back to how I felt as a scared and confused kid in 1999. Suddenly I was back in the middle of the same battle I always fought, the one where I am fighting to be believed, to be taken seriously.

Instead of smashing up the room in a rage, a joyful scene which had played out in my mind, I calmly explained that I did exercise, I ran quite a lot actually but you know what, in the last few weeks I had been to exhausted to get out of the door. “Yes, I had tried” I explained “and it has made me feel much worse.”

No, I was simply here because I was desperate. The GP has always been my last resort, the place I am forced to go when I am all out of options.

So in answer to the docs question, I was just wondering if there is anything that could be done to make me feel slightly better? After all that’s what doctors do, right?

Unsurprisingly, I was told that there was nothing much they could do but I would be put down for yet more blood tests and, probably to try and stop me coming back for more time wasting, any other test going.

While ticking the boxes and filling the forms I was then told that “everyone I see feels tired from time to time.”

At this point I had mentally burned down the surgery and was doing a merry dance around the flames. Instead I tried explaining yet again that this was more so much more than being just tired, before thanking the doc for everything they could do and leaving. (Why the hell am I so fecking polite?) Without someone shouting and screaming I doubt doctors like this will ever understand. Sadly I’m not the shouting and screaming type. Passive aggressively blogging about it later is much more my thing.

So I walked out the surgery in a ball of frustration, anger and loneliness. Once again I was on my own.

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.

Home Run

You can just see the trees from the kitchen window. Their arterial forms stretch to the skies, as if they are trying desperately to pluck spring from the crisp, winter's air.

It's been two weeks, two weeks of staring past the rooftops, at those trees, thinking about the hills they stand on, daydreaming about the trails that meander around their roots.

I knew I wouldn't be able to run much whilst moving house. I had bulk trained beforehand, fitting as much as I could into the early part of the week hoping that a few days off wouldn't hurt the marathon plan. Optimism is always my downfall though and as usual I had a little voice telling me I could probably sneak in a short run on most days.

Sometimes though optimism is a lying bastard and of course I ended up either too busy or too knackered to run more than once. After filling boxes with seemingly endless amounts of stuff (how did we collect so much crap?) my last run from the old place was a familiar loop around the industrial estates. A kind of farewell run, if you will. As I passed endless car dealerships and tile warehouses, the run made me look forward to moving even more.

I knew what surrounded the new house, endless Google mapping had shown that just a short half mile away there were hills, fields, woods and countryside. Not a car dealership in sight. Any quiet moment in work I would be planning routes, wondering just what they would be like in reality.

Of course, I had already run from the new place, one of the most important things to consider when moving is what the local routes are like. One evening I had parked the car nearby and after a couple of passes either side of the house, looking in but hoping not to get looked at, I went to see what I could find.

Over the motorway the world seemed to open up, fields stretched towards the woods, paths led temptingly into the distance, it was all I needed to see. I choose a path alongside the road, to have run anything else, to have barrelled headlong into the woodland seemed wrong. After all we didn't own the place yet, to use the best trails without belonging felt like trespassing, besides if things went wrong and we didn't get the house I didn't really want to find out what I was going to miss.

So the short trail alongside the M4 seemed like the best compromise. Despite the rush of furious traffic nearby, I felt in the middle of nowhere. I ran through fields, dodged horses and jumped over tree routes on paths that tickled the edge of the woodland beyond.

It was a taster run, something to lure me back, and boy did it work.

I hadn't been sure about the house before, but as I returned to the car muddied and out of breath I was sure about it now. I wanted to explore the hills beyond. I wanted to live here.

As more boxes were unloaded, as more jobs filled the to do list I realised running may have to wait a few days.

Eventually, I did get out to explore, but winter and the darkness it brings meant that the woods remained out of reach.

Anything with street lights though was fair game, I looped around nearby roads and the local villages, I ran up streets and hills that I knew led to the woods but had to turn back as the lights ended and darkness blocked my path.

It's always good exploring new places but it just didn't feel like enough, still the hills would taunt me whilst I ate breakfast.

Then, a day off, some sunshine and no excuses.

Through the path the neighbours had told me about, across a field, over the motorway and freedom.

Up again, past the dog walkers and then into the sun-dappled woodland beyond. Finally I've made it. Higher the trail climbs, pine needles coat the ground below, giving it the spongy feeling, like a running track made from nature.

Paths keep on darting left and right but I keep going up, I have to get to the top.

A bench waits to scoop people up as the path flattens out and I'm left with a choice of left or right.

Right it is, skipping over the mud before giving in completely and squelching through the middle of it. Before long I'm back out in bright sunlight again making my way across the more fields before diving back into the woodland again.

The tall pines have been replaced by what feels like more ancient woodland. Last autumn's leaves still blanket the floor, turning the hillside a bright shade of copper. They rustle beneath my feet as I barrel downhill way to quickly and completely out of control, like a child who has discovered the joy of running flat out before their legs have figured out how to do it properly.

Paths branch off the main trail, enticing me to run down them, to get truly lost in this natural maze. One leads me through a river, wet footprints marking my route as I climb the path the other side. It's a dead end, a bridle path that leads to the road back home. I'm not ready for tarmac and civilisation quiet yet though and cross the river into the woods once more.

Back up the hillside again, through the contours of ancient earth mounds. In the distance a dog is jumping at a rope swing, barking at the stick that is seemingly defying gravity by hovering in mid air.

Eventually I find a familiar looking path, one that leads downhill, taking me back home. Ignoring the distraction of the unexplored I follow it back to the edge of the woods and out once again into the vivid winters sunlight.

The other side of the motorway lies reality, yet more appliances are being delivered for the kitchen and as that is my main reason for this day off I guess I had better be in when they arrive.

Until the next time, I will once again stare at the distant trees whilst eating my breakfast, daydreaming about what else lies undiscovered.