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

Why All Publicity ISN'T Good Publicity.

So, M.E was in the news a lot yesterday. It's rare for it to have such attention paid to it by the media, so often we have to fight to be heard, yet yesterday it seemed you couldn't escape it. Normally I would say this was no bad thing, after all, just mentioning the illness on radio or television may be enough to bring it in to people's consciousness; people who would otherwise be oblivious to it.

Let me start off by saying that in my house, Radio 5 is the radio station that pretty much every radio in the house is permanently tuned in to. We're a big sporting family (well, not myself for obvious reasons!) but everyone likes to be up to date on football and cricket results, as well as listening to their usually brilliant news coverage.

So yesterday morning, as usual, I come downstairs to find my mum in the kitchen, radio on whilst I took a seat in the living room, where I could still hear it. I'd read some things on twitter whilst still upstairs in bed about the coverage that had been on Radio 4, which sadly I didn't manage to hear, but will try and look up online. Then, Radio 5 move on to a discussion about M.E, and I'm all ears.

They started by talking to Esther Crawley, AYME's medical adviser, who has been the subject of death threats due to the research she takes part in. That is truly horrifying, and I am disgusted that people would go to those lengths to voice their disagreement, however strongly they feel about the research being undertaken. People who are behind such threats give a bad name to the M.E community, which is a strong one, and has a very big online presence. Whilst we fight to be heard, these people are giving all of us a bad name.

The dilemma with M.E research is that so much of it seems to be psychological, which lead to the next topic of discussion on the radio. Let me state quiet clearly that M.E is NOT a psychological illness, and has been recognised by the World Health Organisation as a NEUROLOGICAL condition. The problem, however, lies with the continued lack of understanding from members of the public, right up to people in the medical profession, who often refuse to accept this fact, and therefore disregard the illness or treat it as a psychological problem. There is no test for M.E, and so much in unknown about it, and it seems for some doctors that means a problem for them.

So I was disgusted when, once the presenter started taking calls from members of the public, she started grilling them about why they had a problem with M.E being labeled psychological. According to her, it is because there is a negative stigma associated with mental illness, and we don't want to be associated with that. Is that the reason? NO. The reason M.E patients do not wish to be, and should in no case, be classed as psychologically ill, is because M.E IS NOT A PSYCHOLOGICAL ILLNESS. Think of it like this. You break your leg. You can't walk and are in horrendous amounts of pain. So you go to the doctor, only for them to turn to you and say "I'm sorry, I can't help you because you don't have a physical problem, it's a psychological problem you have, it's all in your head." That would be completely unacceptable and wrong, yet this is exactly the kind of treatment M.E patients are subjected to. They have a physical illness, recognised by the WHO and yet are faced with being treated as a psychiatric patient.

To be honest, that is when I turned off the radio. After listening to the presenter speaking to M.E sufferers, and their families, and insisting that maybe the problem we has is that we were prejudiced against mental illness and that's why we weren't happy with the psychological research, and being treated as psychiatric patients, I got so angry I turned off. I have no idea how that segment ended, but in my opinion, the damage was already done.

I would just like to state, for the record, that I have no issues with mental illness. I would never trivialise it, or treat people suffering from mental illness as any kind of lesser being. I understand how devastating mental illness is. Why? One of the people closest to me in the world suffers from depression and anxiety, and I see what she goes through and the scars she bears (literally). I have seen people close to me go through eating disorders, and I understand how horrific an illness anorexia/bulimia is. If I had a psychological illness, my experiences with these people close to me would help me to recognise that, and I would do anything to try and help myself, because I've seen how lives can be nearly lost through mental illness. But at the end of the day, I don't have a psychological illness, I have a physical one, which is why I deserve to be treated in a way that is appropriate for the recognised condition I have.

Yes, M.E research has been focused on psychological treatments, something I neither agree with, or would ever take part in. I believe bio-medical research needs to be the focus if we are to ever get some kind of cure. But death threats are not the way. I truly hope the world will come to realise our struggle sooner rather than later, and that we all get the research in to our illness to help us escape the daily battle. The stigma, and mistreatment of M.E patients needs to stop, and the media needs to get their act together and help us, not hinder our cause by taking us ten steps back for every one step forward.

Sarah x

I'm Still Aliveeeee!

I have been neglecting this blog a bit, especially considering I bang on so much about Harry Potter. You'd think I'd be all hyper-ventilating because the last film just came out. Which I am doing, just not blogging about it ;) Firstly, I don't want to review it because reviewing it without spoilers is pretty much impossible. And all the stuff I want to squee over also involves spoilers. Plus there's the fact I have been to busy watching the film at the cinema to actually talk about it ;) Oh and I've suddenly developed this social life where I feel busy, when in reality, I'm not that busy compared to a healthy person. But compared to the person I was last year, I am so freaking busy.


So yes, where was I? Ramble, ramble ;) I will start working on this blog more soon, I think it needs an overhaul and a new direction, or just some regular posts, so my little old brain is working on it!


In the mean time, if you actually liked my Potter related ramblings then I am using "thing worth sharing" as a shameless plug for my own Tumblr which I just set up ;) http://postpottersyndrome.tumblr.com check it! So whilst I fangirl over there, I might actually use this blog to get more "proper" blogging done.


Until next time!


Sarah x

One Minute Past Midnight

When I first heard that UK cinemas were doing midnight showings of Deathly Hallows Part 2, I knew I had to be there. So, despite the fact I had already booked tickets for a showing later on in the day, I braved it and booked the midnight tickets, after managing to convince my mum to come with me!

The day beforehand was spent resting. I spent the whole day in bed, had a snooze in the afternoon and tried to conserve all the energy I could. I started getting ready around 8/9 o'clock when I couldn't contain my excitement anymore and became restless. I changed outfits, checked and double checked I had both my 3D glasses and my regular ones. I went downstairs around half past 10, to wait for the taxi we had booked for 11 o'clock. I sat in my living room, my Hufflepuff scarf around my neck, a home-made Hufflepuff crest pinned to my chest, ready for the ride to begin.

The taxi arrived, and ten minutes later I was climbing out of the car outside the cinema. I hadn't seen town at that time of night for many years, and, as you would expect, there were a fair few drunkards about! As I walked down towards the cinema itself, one woman approached me with her finger outstretched and called to her friends "Oh look! She's got a Hogwarts scarf on!"

And I wasn't the only one. On entering the cinema I spied two girls seated in the foyer, one of them in a Gryffindor scarf, the other a fellow Hufflepuff. Whilst walking around the cinema I spotted witches complete with pointed hats and broomsticks, people in robes, people with scarves. I felt at home straight away!

Not long after we'd arrived, the Deathly Hallows part 1 screening that had been taking place kicked out and so the foyer was flooded with even more magical folk. We headed upstairs where they had a cardboard cutout of Harry and Voldemort by which people were taking pictures. I wasn't leaving without a photo to mark the night so I braved my hatred of flash to get a picture.

They let us in at about 11.30, where we took our seats, which were numbered due to the demand! We sat, we waited, and eventually coming up to midnight the trailers kicked off. Best moment of the trailers? The advert for Universal Orlando Resort in Florida. The trailer contained a montage of the parks located there, and as soon as the Wizarding World appeared a huge cheer and round of applause filled the room.

After that, the trailers truly seemed to go on forever. People were getting restless, sighing, waiting. Then, the BBFC screen came up, Voldemort appeared and the last scene from Part 1 unfolded. Then, the moment we'd all been waiting for. The WB logo growing ever closer; the film begins.

I will never forget the midnight showing, nor the atmosphere it provided. When we laughed, we laughed as one, when we cried, we cried as one. The famous lines from the book received cheers and applause, as well as those moments we'd all been waiting to see. The biggest reaction? I'm not one to spoil, but a long awaited romantic embrace stole the show.

It all ends here. Yes, the film is out, there will never be another. But Potter isn't over. The number of people in the cinema that night, two full screens of Potter fans show how alive Potter is today. The magic lives on.

Sarah x

Premiere Day!

I actually can't believe the Deathly Hallows Part 2 Premiere is tonight! Seems like so long I've been waiting for this film, and now the publicity is in full swing, interviews are happening left, right and centre and the media circus descends on Trafalgar Square tonight when the stars will gather for the last time. It's so exciting! Yet for the actors, this is the moment it will sink in. Throughtout the press for Part 1, they all stated the Part 2 premiere as the moment it would sink in that it's finally coming to an end.

So tonight, I will be glued to my laptop watching the livestream, whilst being grateful that I'm sat at home in the warmth with as much tea as I like on hand, yet also feeling a touch jealous that all those fans are getting to be part of that moment. Some of them have been camping all week which, let's face it, is pretty dedicated! Puts my Harry Potter fan-ness in perspective, I feel almost inadequate ;)

I imagine the next week will be somewhat of a blur, I've managed to end up with a hospital appointment a few days before I'm meant to see the film, which will mean a strict schedule of rest is in order to see me through the week. But I've been good so far! Now to balance the excitement the countdown to the film will create, whilst not getting so excited that all my precious energy is wasted on that.

I'm sure I'll blog straight after the film, just to have somewhere to squee to my heart's content, and maybe even post a little blog beforehand, time will tell! But I can't believe we really are nearing the end, what a journey.

"Thing worth sharing" this week goes to this article, flying 5000 miles to go to the premiere, just in case you doubted the dedication <3

And a special note goes to everyone who lost their lives 6 years ago today, and to the families still grieving.

Until the next time!

Sarah x

Fear of Failure

For this blog post, I wanted to share my views and feelings on one of the toughest decisions of my life, dropping out of college. So it's a personal blog post, and purely my own opinions. Enjoy :)

When I was 17, my health deteriorated to the point where I could no longer attend 6th form college, leading to me having to eventually make the decision to drop out. This is no easy decision; abandoning your education goes against all your instincts, but when your body is unable to cope, there really is no other choice.

The decision to drop out of college was not an easy one for me, and I know there are plenty of fellow M.E sufferers who have faced the same dilemma of putting their health first. Throughout my school life I was a fairly high achiever, I did well in most of my subjects and managed to get good grades. My GCSE grades will always be slightly tinged with disappointment for me because, before I fell ill, I was predicted As and A*s. This was never going to be achieveable after missing so much schooling through years 10 and 11, not to mention the fact I was still battling my symptoms every day.


I've always said my doing well at school was a product of my fear of failure; to me, I just couldn't face the idea of letting myself and other people down. I had to try my best and aim for good grades. But pulling out of college and becoming something of a "school drop out" has all the connotations of failure, one of my biggest fears.


The way we are brought up these days is to be told that qualifications are everything; that without all our GCSEs we can not possibly get anywhere in life. Schools and parents are constantly drilling it in to us from such a young age that we don't want to become bin men or work in a fast food outlet. The pressure to avoid this seemingly dreadful life is huge. I took a lot of comfort in the fact that secondary schools these days care mostly about their league tables, as opposed to personal achievements of their students. Sure, there are certain teachers who will take an interest in their students, and who care about what happens once they move on in to the big wide world, but at the end of the day if a school wants to look good, it needs pupils to get high grades.


Dropping out of school to focus on my health wasn't a failure. It was the greatest decision I ever made, because my body could relax without fear of stress induced relapses, and I had more time and energy to put in to getting myself better. But there is one thing I regret, and that's not realising that school isn't everything earlier on in my life. Even before I got ill, I fear I wasted some of the best years of my life stressing over school work instead of having fun. Don't get me wrong, you can still do well at school and have fun, and I'm in no way implying that everyone should doss around and skip classes, because I'm not. I'm saying that the stress associated with the fear of failing was just wasted energy.


I've learnt from this period in my life, and even when I go on to work (when I'm well enough) I will make sure that I enjoy myself, and not work myself in to a hole. I'm an ambitious person, but that doesn't mean I need to sacrifice any kind of happiness and enjoyment I can get from work.


For me, one quote that helps me realise that however my health may be, there are more important things was this quote-


It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all - in which case, you fail by default. - J. K. Rowling.


I don't want to be one of the people who hasn't lived; I want to learn from every experience. After all, getting ill has turned out to be more educational than any school course.

My thing worth sharing, in keeping with my blog, is the full J. K. Rowling quote I used above, which can be found here. :) Thank you for reading!

Until next time,

Sarah x

JKR speaks! Pottermore announcement squee times.

It's hard to believe it was only a week ago that Potter fans across the globe were set on an online hunt for letters, the result of which spelt out the mysterious "Pottermore". And now J. K. Rowling has revealed the website, which will provide much awaited e-book copies of her novels, alongside extra information about our favourite characters which she has been "hoarding" as well as an interactive experience which will see users have the chance to become sorted and follow Harry's journey from their own perspective.

My opinion? It sounds amazing! For so long I've wanted extra information to be released, and with hints at an encylopaedia in the past it has always been a possibility. Am I happy at the way in which it will be released? Perfectly! Pottermore promises an interactive reading experience, allowing readers to track their progress and gather extra information and earn House points along the way. Sounds pretty exciting to me! My one concern is the sorting element, in that I doubt you'll find a Potter fan who hasn't already partaken in some sort of sorting quiz, and formed an alliegance to a particular House. For me, that house is Hufflepuff, where the "just and loyal" and "unafraid of toil" find themselves at home. But with news that the sorting questions are coming from JKR's own head, how can we argue with the results?! It's the closest to a Hogwarts sorting we're ever going to get. Plus, with extra information about Hufflepuff, Ravenclaw and Slytherin for people sorted in to those particular houses, it should make for a wonderful experience!

The website launches in October (a nice birthday present for me!) but fans are getting the chance at an early preview on 31st July, something which I'll be keeping my eye on. One thing is for sure, Potter and the Potter fandom won't be over come 15th July, something which we can all be eternally grateful for <3


My "thing worth sharing" is coming in quote form via Leaky's twitter updates -

A lot of the #pottermore team is Hufflepuff, which JKR said is what "you want in a team - they're workers!"

Until next time,

Sarah x