The Bus Journey Metaphor

This popped into my head at the weekend, whilst I was in the bath of all places (tmi?) which seems to be where all my inspiration comes to me. At the moment I'm sort of in this inbetween phase of my illness, where I'm a lot better than I was, but I have an awful long way still to go, and the journey to recovery is no simple one. What inspired me to write this, and what possibly lead me to the idea in the first place, was the reaction I get from people now that my health has improved. Comparing me to how I was, even just this time last year, sees a dramatic difference in my health and abilities. People see me doing all this stuff that I didn't use to be able to do, and presume that that's me all better again! Well, no, sadly it isn't. I'm not recovered, I'm still very much ill, and the things I do manage nowadays still cause me pain and exhaustion and are a struggle. And, most importantly, the road ahead is certainly not clear.

So I wanted a way to describe this, and as I seem to be using the word journey a lot when I think about it, the idea of a bus journey came into my head. The route I am travelling is the "road to recovery" and the bus driver refers to M.E itself, for that is who is truly in charge, and I am a mere passenger. For this story, I shall say that I started out by catching the bus at the end of 2009. That time period for me was when, after a year and a half of being bedbound, I started making progress once again. I stepped onto the progress bus, and this is where my journey begins.

The bus I am on in this story is travelling at a very slow but very steady speed. That is to say it is always moving forward, always heading in the right direction, but it won't be winning any races anytime soon. Which pretty much describes my progress. As of the end of 2009, I began to make little improvements, very slowly and gradually, but which when added together moved me forward a great deal. I could tolerate more light, I could get downstairs more often, I made my first trips out of the house. So, I have passed many milestones whilst I've been on this bus. I may have hit the occasional speed bump (in the form of a cold or a flare up of old symptoms) which has shaken my health for a short while. Or perhaps had to swerve to avoid an adventurous duck who ventured across the road, (in other words something unexpected has come up I couldn't plan for, some drama or other that causes me stress) meaning I've had to stop everything, hit the breaks and check both the duck and myself are OK before I can set off once more. But I got going again and was till heading in the right direction. And that has pretty much been the case up until the point I'm at now.

With M.E it's never simple. Just because I've made progress so far, doesn't mean there aren't twists and turns in the road ahead of me. The closest I ever saw myself to recovery was when I was at 6th form. I'd missed nearly all of the 2 previous years of school, and there I was, well enough to attend for 2 whole terms. By well enough to attend, I mean for 1 hour a day on average. So comparing that to a healthy person, I still had a long way to go, and I struggled through it, but it was the closest to getting my life back I'd been since falling ill. Then I was hit by a huge relapse which sent me back to being bedbound, and since then I've had to keep the possibility of that happening again in mind, because I'd be stupid not to.


I'm not saying I'm not optimistic, after all, when I boarded this "bus" I bought a ticket to Full Health, and I fully intend to arrive at that destination. But I've been sensible and packed a nighty, spare set of clothes and a toothbrush in a bag which I'm carrying with me, just in case I hit any snags in my journey and end up stopping over somewhere I never intended to, let's say Relapseville or Virus Town.


Recovering from M.E is not an easy journey, and there are countless possibilities I have to prepare for. The way I see it is that this bus can take any direction it wants. It could do a u-turn in the middle of the street at any moment and take me straight back to the very place I first got on. It could crash completely, leaving my body battered and bruised and unable to function, meaning even the idea of catching the bus again anytime soon is out of the question. Plus the bus itself will need repairs and it could be months or years before I ever see it, and that opportunity to make progress, again.

The other possibilities I see are that the bus will carry on heading to its original destination, but via a network of side streets or diversions. I may be halfway there and the bus decides to take a left turn. Technically it's still heading towards the same final destination, but it's going to take a lot longer this way. The new neighbourhood the bus driver has decided to divert into is providing new symptoms. They don't set me back, but maybe they stop me making progress, and so I'm stuck in a network of side streets until I can find my way to a main road. Maybe I get stuck going round the same roundabout for a few months because my body can't work out how to get back on track. Or perhaps the driver decides to try something new, something he's never done before like some stunt driving, only he ends up with a puncture, meaning you're stuck by the side of the road until somebody can fix it. You get the idea.

Where I am right now is on this bus. I'm on the main road, following all the sign posts to my destination, but every time I pass a turning or a fork in the road I can't help glancing down that street and wondering if the next time I'm faced with a different direction, the bus driver (i.e M.E itself) will swing the steering wheel and knock me off course. So I have to prepared for the possibility, and I would like others to be able to see that too.

In order to get the support I need to eventually recover, I need everyone to see how much further is left of my journey, and what obstacles I still have left to face. It's a scary road ahead, and I can't face it all on my own. Yes I've come a long way, but that is no guarantee it will carry on. After all, bus travel is never the most reliable form of transport!

I have no idea whether this metaphor has made any sense, but it was the best way I could think of to describe it. So well done if you got it ;) and thank you for taking the time to read my rambling.

And for a my "thing worth sharing" I highly recommend my lovely friend Suz's blog <3 http://theworldaccordingtosuze.blogspot.com/


Until next time,


Sarah x