Diary – Diary of a Disabled Person.

School, Sickness, and Stupidity: Part 1.

It’s been four years since I left school, and I still don’t talk about it much. There’s far too much raw, pent up emotion for me to discuss it coherently, but writing it all down should allow me to give a logical account of my experiences.

My secondary school was situated at the other end of the road I lived on, and was just visible from my parent’s bedroom window. It was set on quite a steep hill, meaning that one side of the school had an extra level built into the hillside, and it had a central forum where large gatherings and assemblies took place, with all the classrooms built on a loop surrounding this. The school opened just as I transferred to high school, meaning it was brand new; the old, dilapidated school it had replaced was being knocked down a few metres from the shiny, new building.

I was half way through Year 10 (USA 9^th Grade) when a virus decided to chow down on the protective tissue surrounding my brain. Given that our GP’s surgery was closed for the day, and no other medical aid would physically come to us unless my condition grew significantly worse, we couldn’t get proof that I had, indeed, suffered such a serious illness. Unsurprisingly, the school was sceptical as to my plight without the necessary proof, and stipulated that I still sat my GCSE biology exam just one week after first falling ill. The school also stipulated that I wear my uniform, including the stuffy and uncomfortable blazer, but assured my mum that I would be provided with a well ventilated room and access to drinking water.

A couple of days after first falling ill, I started to revise as much as I could, which in all honesty wasn’t much. I felt so rotten I don’t think I took much of it in anyway. Come the day of the exam, I hauled myself out of bed early, ate a little breakfast, pulled on my uniform, and went to school. I was put in one of the hottest rooms in the building, where none of the windows opened, and I wasn’t even allowed to get water from the tap outside. To make matters worse, another girl sitting the same exam had also been ill, and therefore was in the same room as me. She turned up extremely late without her uniform, and I was made to wait to start the exam until she arrived. All I remember of the paper is wanting to use it as a pillow for my aching head, and stumbling out over an hour later wanting nothing more than to be left in peace.

Another week of bed rest later, and the attendance team at my school were ringing up constantly, nagging my mum about my absence from school. Over the phone, the doctor had advised I take several weeks off to rest following the meningitis, but without the note our case would not be heard. I was pushed back into school on a part-time basis, while the attendance team continued to pressure me and my parents until I was back full-time. This included participation is both sports and dance classes despite my mum trying her best to make them see reason.

A couple of months after sitting the exam, the results came out. I had obtained a grade B, which I was pretty pleased with under the circumstances. Unfortunately, a grade B was below my target grade, and as far as the teachers were concerned, this was inadequate. It was quite the fight to prevent being entered for a resit of the exam, and being told that my best efforts under adverse circumstances were worthless did nothing for my self-esteem. I felt like my entire life was falling apart around me into an irreparable mess, and nearly everyone was against me. I tried to put it all out of my mind and concentrate on my future exams, keeping my head down and staying out of trouble, but this was harder than I could have imagined.

Shortly after receiving my exam result, I was pulled to one side during a gym lesson for a “quick discussion”. What followed was a lengthy and entirely one-sided lecture on how it didn’t matter how academically gifted I was, being physically ill would render it all pointless. She then told me to start running on the treadmill, not walking. Had I been the more confident individual I am today, I would have reminded her to have her quick discussion with Steven Hawking and see what his reaction was, but I just nodded mutely and did the bare minimum that would qualify as running to appease her. I think this was the point where I started to truly hate school.

Eventually the summer holidays arrived, for which I was grateful. Over the coming weeks I regularly saw the GP, running tests until I was finally diagnosed with Chronic Fatigue Syndrome (CFS). Now backed up with medical evidence, I was finally allowed to drop dance and sports, but it took a further six weeks to convince the school that my timetable was still too much for me to cope with. Eventually I was allowed to drop French, and I was on a timetable that I could manage while I was so ill. Even so I still had to take some time off school due to illness, made worse by the stress of the constant hounding from the attendance team.

Roll and Rock: Another Short Story.

“You’re here for the auditions?” I was greeted with the standard perplexed expression I was so familiar with.

“What bothers you?” I said sharply, impatient with yet another judgemental face, “The wheels, or the tits?” I pushed through the double doors on my own, drum stick bag balanced on my knees, and headed towards the small crowd gathered in front of a stage, where they were being addressed by the bands’ lead singer, Josh.

“Welcome to the auditions to become the new drummer for The Avalanche. We’re looking for someone to come on our UK tour with us after Sam quit the band last month, and perhaps to record future music with if all goes well.

“The auditions will work like this; you will be called onto the stage in alphabetical order, where you will be asked to perform snippets of three of our songs, randomly selected by us. If we think you have potential, you will be asked to stay. Those who have potential will perform again after everyone else has left; you will be asked to do a randomly selected song in full.

“Good luck,” Josh stepped off the stage to sit with Danny and Adrienne, the other members of the band.

My surname meant that I would be one of the last to audition, so I sat back and tried to relax as I watched a stream of white men climb onto the stage and drum clumsily along to the backing tracks provided. Only a few were requested to stay behind, and I could see the band growing impatient and bored. It was only when my name was called that I realised that I was the only woman to be auditioning, let alone the only wheelchair user.

As expected, the stage had steps to ascend. I rolled up to them and looked over at the band, who were mortified. Adrienne stood up.

“Oh my god, I’m so sorry!” she exclaimed, “There’s a wheelchair ramp in the store room at the back. We didn’t think to bring it through. I’ll go get it now, and we’re so sorry!” She dashed out of the room, and a few minutes later returned with a metal ramp. Josh and Danny fitted it securely to the stage with some difficulty, requiring a little direction from me as the only one with experience using them. They were all apologising profusely, although I could feel the hostile glares I was receiving from the other drummers in the hall. I repeatedly assured them that it was OK, and that what mattered to me was that they dealt with the problem.

I rolled up the ramp, moved the drum stool out of my way, and pulled my drum sticks from their bag. Flustered from the flurry of activity I forgot to put my brakes on, and the second I started to play the requested song, my wheelchair rolled backwards and off the stage. Now it was my turn to look mortified as I heard footsteps running to my side. Adrienne helped me upright and checked I was alright, and then I returned to the drum kit. This time I made sure the brakes were securely on, trying not to blush as the other drummers sniggered at me.

Certain that I had screwed up the audition so badly as to destroy any chance of being chosen, my nerves disappeared, and I could fully focus on the music. I hit every beat cleanly and crisply, and even added my own technical flourishes where I felt they were needed. By the time I had completed my three song excerpts, I was almost disappointed that it was over, especially as the band had been gracious enough not to “randomly select” the three easiest songs for me to perform out of misguided sympathy. When Josh requested me to stay behind, I was so surprised I almost fell off the stage a second time.

A little less than an hour later the band had come to their decision, and were addressing me and the other four drummers who had been asked to perform a second time.

“You all did extremely well,” Josh said as he took to the stage once more. I had the feeling that he was simply trying to be nice to the unsuccessful drummers, particularly me.

“However, the decision was unanimous. We all agreed that our new drummer should be Lily Thorpe.”

There was a moment of silence while all of us sat there, stunned. There must have been some mistake. However, before I had the chance to express my disbelief, the four men around me started shouting loudly.

“Rigged!”

“This is ridiculous. You just feel sorry for her!”

“You’re only doing it to improve your social status by being all liberal and inclusive!”

“She couldn’t even get on the stage without your help; how the hell do you think she’ll manage on tour?”

Secretly, I think I agreed with them.

Josh raised his hand, and their complaints died down to a murmur.

“Actually, she was the most technically proficient, she was able to insert her own distinctive flair into the music, and she clearly knows our music well. She was also the nicest, which given the amount of time we will spend together over the next few months, counts for more than you could imagine,” Adrienne chipped in.

“Precisely,” Josh said, “and even if that wasn’t the case, you’ve all just proved that you’re not the type of people we want to spend time with.”

“You may take your leave,” Danny added firmly.

The others filed out of the room, chuntering unhappily among themselves. As the doors swung shut behind them, a quiet settled over the room.

“Congratulations!” Adrienne said, a big grin lighting up her face.

“Are you sure?” I practically whispered, “You don’t have to do this out of sympathy, you know.”

“We are sure, and this isn’t sympathy,” Josh said, “I’m sorry the others were like that.”

The man who had greeted me at the door now wandered into the room. His eyes settled on me, and he frowned slightly.

“No luck then, I take it?” he said. To my great surprise Adrienne marched across the room and punched him on the nose.

“I’ve been waiting all day for the perfect excuse to do that,” she muttered between clenched teeth, then turned to me “I don’t know how you cope.”

“By drumming,” I replied, a small smile spreading across my face, “So, when do I start?”

***

We had filled a minivan with our instruments, wires, and amps, with Josh and Adrienne crushed together in the front while Danny took the wheel. I had bought a ramp for the van, allowing me to park in the back of it, surrounded by our equipment. Every time we went over a speed bump, the ramp clashed one of the cymbals right next to my head, leaving me with an intense ringing sound in my ear before we had even started.

After a two hour drive we reached our first venue, a community centre that had been converted into a bar and club the year before. We parked up, using my disabled parking badge to obtain a nice, wide space. Josh and Danny, now experts at handling the ramp, had me out of the van within a minute, and we began unloading our equipment. I carried wires, accessories, and small amps on my knees, relying on the others to carry the larger pieces.

The community centre had been a relatively old building, and although the conversion into a club had made it accessible, the makeshift ramps that had been bought wobbled worryingly every time I traversed them. The doorways were very narrow, and I bumped my elbows and knuckles countless times as I propelled myself forwards, an act which had my arms stuck out at odd angles. The backstage corridors were narrow and maze-like, and the stage where we were performing had no ramp at all, with the owners of the club having to provide an old sheet of thin plywood at a very steep angle as a poor substitute. With nothing to hold it in place at either end, I had to rely on my bandmates to hold it still while one of them helped push me up the ramp. The disabled toilet was also being used to store cleaning materials, and I had to slalom around mops and brushes.

We had finished setting up, including our sound check, about 15 minutes before the doors were due to open. Now, with nothing to take my mind off the task, I started to grow nervous. This was the first live gig I had had with any band, and I knew that as the newest member of The Avalanche I would be subjected to great scrutiny. I had already been the hot topic for discussion on our social media, with everyone wondering whether I had simply been selected out of sympathy. These comments seemed to irritate Adrienne more than me, who had dealt with many sexist comments when she joined The Avalanche as it was. I didn’t mind. I had decided to prove those who doubted my abilities wrong by proving my own capability.

Once the doors had opened one of the first spectators who entered was a wheelchair-bound girl, perhaps 10 or 11 years old, proudly sporting one of our new band t-shirts. She smiled at me broadly, as did the woman with her who I assumed was her mother, and I returned the compliment. Adrienne turned round to speak to me.

“Well, you have one fan already,” she smiled.

The room slowly filled up, and the buzz of anticipation grew with the crowd. Lots of people wanted to get a good look at new drummer, and I blushed slightly. Half an hour after the doors had opened Josh leapt up to his microphone, gave a warm welcome to our spectators, and played the opening chords of our first song on his battered electric guitar. I closed my eyes, took a deep breath, and let myself become immersed in the music. As I opened with my first drum break, a round of applause swept through the crowd, some of whom were beginning to accept that I was no sympathy vote.

The Concert from Roll and Rock

We played for over an hour before taking a break while a stand-up comedian took to the stage for his half-time show. As I reached the disabled bathroom, the young girl I had spotted before the show opened the door, and rolled outwards. When she saw me I thought she was going to leap straight out of her wheelchair.

“Oh my god, mum, it’s Lily!” she looked up at her mum who was stood behind her.

“Hi,” I smiled, “What’s your name?”

“I’m Lily too,” she grinned enthusiastically, “and I want to play the drums like you!”

“Nice name and nice choice,” I laughed, “Do you want to be the first person to receive my autograph?”

Her mum rummaged around in her handbag for a notepad and pen, and then I wrote my message.

To Lily,

You are the first person to receive my autograph!

A piece of advice; don’t let those who doubt you stop you from doing what you want to do,

Lily Thorpe.

She grinned and bellowed an enthusiastic thank you before heading back into the club with her mum, chatting excitedly the whole time.

I was grateful for a drink and a rest with Josh, Adrienne, and Danny in the green room before returning to the stage half an hour later for an even longer set. We got an excellent reception from the crowd, and by the end of the gig I was too exhilarated to be tired. Slowly the crowd dispersed, a few stopping to speak to us and get our autographs or a selfie. I lost count of the people who told me I was a great drummer, very deserving of my place in the band, but the best encounter of the night remained the young girl that I had inspired. It felt good to set a good example for people like her to follow.

The van was loaded up again, myself included, and then we headed off to our motel around the corner. The van was locked securely in the garage and we all filed into reception looking sweaty and dishevelled. The receptionist did not appear to be phased, and provided us with the keys to our rooms. I was sharing with Adrienne, who was able to hold open doors for me as I used all my strength to push myself along the thick carpet.

I was tired beyond belief and in desperate need of a shower, and my ears were still ringing loudly, but despite all this and a hard, lumpy mattress, I managed to sleep the whole night through. The next morning I got up, washed and dressed, and by 10 am we were ready to set off, and do it all again.

The Many Theories of M.E.

Despite the recent surge of developments in medical research surrounding the condition, the internet is rife with a myriad of pseudo-scientific theories from non-medical experts describing what causes the condition, how it can be prevented, and how it can be cured. These theories are often demeaning to sufferers of M.E (a.k.a. CFS) claiming that we simply don’t look after our bodies, or that it is nothing but a cry for attention. They also tend to support the claim that M.E is not a real disease, reinforcing the negative stigma surrounding what I can assure you is a very real illness.

There is, however, one redeeming feature of these theories; they can be down-right hilarious.

One I hear a lot from people who know that I have a first class honours degree in nutrition is that my illness is the result of multiple nutrient deficiencies, and could be cured by using over-the-counter nutrient supplements. Considering my knowledge of the subject, my ability to tailor my diet to my needs, and to recognise the symptoms of nutrient deficiencies in myself and others, this theory denies all logic. Similarly, if I needed nutrient supplements, the doctor would prescribe them. The only noticeable effects of the store-bought nutrient supplements in the absence of a deficiency is the excess nutrients excreted (meaning the expense quite literally gets flushed down the toilet), and sometimes the onset of nutrient-overdose. Which can have quite serious and permanent effects, such as death.

This is far from the only ridiculous theory I hear. One commonly encountered by M.E sufferers across the world is the idea that we simply need to exercise more. Our “laziness” has led to us being so unfit that this becomes symptomatic. This of course does not apply to all the other unfit people on the planet who suffer no symptoms at all when resting, or walking to the bathroom. I have been told time and time again that my symptoms result from muscle wastage, despite the fact that while I do have much weaker muscle tone than average, you can still see some muscle definition across my whole body. I am told to push through the “pain barrier”, but I can assure you that the pain barrier does not exist for M.E sufferers, and the pain simply gets worse the longer you remain active for.

I have also been told to get pregnant. The logic behind this one is as follows; after undergoing nine months of growing a miniature parasite inside your body, which takes a great deal of energy, and then squeezing the thing out like trying skinny jeans on while being in denial about your clothes size (we’ve all been there), the maternal instinct of holding the baby would override the tiredness signals from my brain. Now I don’t know about you but my personal encounters with new parents show a distinct trend of utter exhaustion from the lack of sleep and constant nappy changing, plus the energy requirements for mothers who choose to breastfeed are substantial. This is all without mentioning the fact that attempting to cure a disease is entirely the wrong reason to have a baby (I know a lot of women suffering from endometriosis hear the “just get pregnant” theory a lot too).

The most ridiculous theory of them all, however, is that I am possessed by a demon and need to be exorcised. I doubt this one needs to be explained, and I have nothing more to say about this one other than “what the F is wrong with some people“.

So please, medical research is a serious career path, and these people know what they’re talking about. Listen to them!

M.E Awareness Week Question and Answer Vlog.

Transcript:

Hi guys,

It’s the big day in M.E Awareness Week, and as promised, I am going to publish a video of me answering your questions about living with the disease. So, without further ado; we have a question from Bre-Am (I apologise so badly if I’ve pronounced that wrong).

Bre-Am has asked me if I appreciate it when people offer me help, or if they’re only doing it to show off to others.

I think if someone sees me struggling, I can’t open a door, I can’t reach something, or they just think I might need some help, and they come and ask, it’s always appreciated. Now, I might say to them “yes, actually, I would appreciate some help,” at this point, or I might say to them “no, thank you, I’m OK.”

It’s OK to say no, and it’s OK to want to be independent. If you ask someone disabled if they want help and they say no, that is OK. Just say “OK, no worries, I’m here if you need anything,” and walk away; there’s no shame in that.

Obviously, asking for help I am never going to take offence to; someone’s trying to be nice, and if I say I want help and they do help, then that’s brilliant. The important thing is to always ask first.

Now, my personal experience is that I’ve not had many people do this to show off to others. Very occasionally you’ll get a charity representative in a middle of a shopping centre who might try and be seen to be inclusive with the disabled person, to be seen as a better charity representative.

Other than that, very few people do it to show off; the biggest problem is actually someone asking if I need help and continuing even after saying no, or just barging in without asking in the first place. It’s my personal space, it’s my equipment; the wheelchair is an extension of my body; do not push yourselves on me unless I ask for help.

But, you know, the offer is always appreciated.

And then we have a question from Sophie, who has been a friend for a long time after we met on forum for people with CFS. She has asked me how my experience of CFS compares to that of others.

I think there are some central aspects to this disease, which like every person with this disease on the planet, I have experienced. That is things like the fatigue, pain, headaches, dizziness, itchy eyes, and poor short term memory and concentration. I think also that the general disbelief in the condition that I have encountered is pretty universal.

But, my experience does differ in things like I went to a GP who believed in CFS, and I was diagnosed within 12 months of becoming ill, and I got access to painkillers, physiotherapy, and counselling. That is really, really good; some doctors don’t believe in the condition and refuse to have anything to do with it, and they won’t diagnose or treat it at all, and people end up going from GP to GP. So I was very lucky in that respect.

I think CFS varies in severity; some people are house bound or bed bound, and for them the wheelchair to go outside in would be useless. They don’t have the energy to even do that. For me, the powered wheelchair has enabled me to be independent, get an education, get a job, and live a relatively normal life, and again I’m very lucky in that respect.

And I think the other big thing that separates people with this illness is actually experiences with social services, and this particularly applies to children.

When I was a teenager someone anonymously reported my parents to social services, claiming that they were using me as a sort of disability benefit fraud, that they were forcing me to be in a wheelchair for the attention and financial support. Social services barely looked into it before dropping the case; they said it was ridiculous, but that mark is still against my parents name and they’ve never been allowed to defend themselves. That is still quite a sore point for us because on their record there is a complaint against my parents that will always be there, however wrong and invalid that complaint is.

Some people never experience that, and they never experience how devastating and how heart-breaking that is; to be the child in that situation, to be the one who is getting their parents into trouble for being sick. It’s awful.

But, again, I’m quite lucky. There are people who get separated from their families, and out into institutions, and other cases that go to court; these are not rare, I know people who have been through this.

If you see the Millions Missing movement on social media, particularly Twitter, that’s what it’s all about. It’s talking about the people who get removed from their families because people don’t believe in their illness, and think that their parents are psychologically abusing them. So there’s a big movement at the minute to get CFS recognised as an actual illness, and to stop social services marching in and pulling families apart, which only tends to make the illness worse, and it’s sheer madness.

Now that’s it for all the questions I’ve had about living with CFS, and I’m going to take it that my blog is so good, and so well-explained, that no one has any more questions about the disease. I hope these answers have been good, but if you have any more questions feel free to ask; I’m happy to message or make another video.

So, please, please, please keep a lookout for tomorrow’s blog post, which is all about the ridiculous theories people have about M.E, what causes it, and how to treat it. It is hilarious.

Also, don’t forget, do donate. 25% of this week’s donations are going to the M.E Association, so not only do you support my writing career, but also a charity who support people like me.

So please, please, please; donate, like, subscribe.

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The Worst Days.

As diabolically insane as this sounds, it’s sometimes all too easy to forget just how bad my Chronic Fatigue Syndrome can get. I get so caught up in the managing of day-to-day events like work and chores that I forget the reason why I manage these tasks so carefully, and then a relapse arrives.

I know it’s going to be a tough day when I wake up and can’t open my eyes. It usually takes several minutes and a monumental effort to finally prise my eyelids apart, and it’s rare that I can keep my eyes open for longer than a second or two. When Jarred switches the light on it feels like I’m looking directly at the sun, and usually aggravates the dull throbbing in my head. Even when lying down, my muscles feel fatigued and my joints ache, so much so that sitting up isn’t an option, and nausea ensures my constant discomfort.

Jarred will fetch me a cup of water and my medication from the kitchen, as often I cannot face eating anything for breakfast. Then, he will go about his daily business and allow me to sink back into sheets and fall asleep.

The sleep I get on these days is not restful, but is broken regularly by short spells of wakefulness before I drift off again. I will dream vividly as I lose track of time, and while the dreams I have when I feel this way are not nightmares, they’re not exactly pleasant either. Eventually, after approximately five of these dreaming sessions, I will wake up properly. I feel more alert and aware of the things going on around me, and my eyes stay open of their own accord. At this point I know I will not sleep for another few hours.

Jarred nips in and out of the bedroom between his daily activities to check on me, so I don’t normally have long to wait before he finds me awake. If I think I can stomach it, he will make me a small sandwich or a bowl of soup, propping up our pillows on the bedhead and lifting my shoulders, so that all I have to do is shuffle slowly until I’m leant against the pillows.

After eating, if I manage to eat at all, comes the hardest part of the day. My mind will be constantly active at this point, often focussing on tasks that I had planned to attend to that day, but my body simply can’t keep up. I grow bored and restless, but can do nothing about it. If I’m lucky I might be able to read a book for a little while, but even the smallest volumes make my arms hurt as I read. Often Jarred has brought through a simple board game likes snakes and ladders, which at least takes my mind off of my condition for a short while. Sometimes I will lean on Jarred, and he will practically carry me into the lounge where I can sit on the sofa and binge watch something on Netflix, but moving me from room to room is difficult for both of us.

As the evening closes in, Jarred will offer me another small something to eat, and will then sit on the bed with a basin of tepid water, washing my hands and face for me. By this point it is all I can do not to fall onto the pillows as Jarred lays them flat on the mattress, pulling the duvet over me as I lack the necessary strength to do this. It doesn’t take me long to fall asleep, but I will be plagued by spells of waking and vivid dreams for most of the night.

These spells can last for several days, or even for a week or two in particularly bad cases. They are undeniably strenuous for me, but also apply pressure to those around me. Similarly, the backlog of tasks not done often makes the recovery harder, as once I am able to turn my attention to them, I have so many to do that it is overwhelming. Fortunately, these spells are not common; as far as CFS goes, I’m one of the lucky ones.

Wheels of Steel: Another Short Story.

Opposite 10 Downing Street a crowd of photographers and news reporters had gathered, all hoping to get the best images of the new Prime Minister entering the house for the first time. As the police escort appeared around the corner the crowd erupted, and the cameras started flashing. In place of the sleek, black car the previous Prime Minister had arrived in was a small van, which drew somewhat less gracefully to a halt outside number 10.

The chauffer climbed out of the driving seat, ignoring the crowd completely, and opened up the back of the van. He pulled out a metal ramp, which he made sure was secure before the Prime Minister wheeled herself backwards onto the road. She made sure to wave to everyone opposite before making her way a few metres down the street to where a temporary plastic ramp had been put in place to get her onto the pavement. Once aligned perfectly, she pushed herself up the ramp, and stopped to push a loose strand of hair back from her face before making her way towards her new home.

By the time she arrived at the door of the house, the chauffer had cleared up the ramp and driven off, so the photographers got a clear view of her as the infamous black door slowly opened. Another plastic ramp, in a garish orange that clashed with the otherwise refined scene, was placed down, and the Prime Minister went indoors. When the door was closed firmly behind her, she was relieved to finally be away from the prying eyes of the news corporations.

“Welcome, Prime Minister,” the head of staff nodded her head politely.

“Please, call me Sarah,” the Prime Minister returned equally politely, “I’m aware that it is not conventional, but then I doubt that I am going to be a conventional Prime Minister.”

“Indeed, Prime Minister,” the head of staff retorted somewhat more stiffly.

Sarah made her way down the wide hallway, her wheels sinking into the thick, woollen carpet, leaving conspicuous tracks behind her. She was introduced to all of the senior members of staff that she would be working with, but the meeting she enjoyed the most was that of Simon the ginger cat. Being a friendly cat used to being around an ever-changing staff, Simon was more than happy to leap straight onto Sarah’s lap, and to be driven around the house at his leisure.

Simons' New Friend from Wheels of Steel.

As Sarah entered her office, eyeing the large stack of paperwork already on her desk, she asked to speak to the caretaker of the house. A few minutes of fussing Simon later, Sarah heard a rough knock on the heavy door.

“Come in,” she said.

“You asked to see me, Prime Minister?” the caretaker replied.

“Sarah, please. There are going to have to be a few modifications made to the house, I’m afraid,” Sarah said, “If I am to live and work here in comfort, then I need full wheelchair access to all that I will use.” Simon gave an affirmative meow.

“Yes, of course. There are builders booked for this afternoon to install cement ramps at the front door, and also on the pavement outside,” he informed her.

“Fantastic. Now, what about the stairs?” Sarah asked.

“I have a team of engineers coming out tomorrow who will be fitting special stair lifts than can take both you and your wheelchair upstairs.”

“How considerate of you,” Sarah said, impressed.

“A shorter lectern is being built so that you may address the reporters outside as all other Prime Ministers have done, and I was wondering if you would need some mats fitting that would make it easier for you to get over that carpet?”

“That would be ideal, yes. It seems you have everything covered,” Sarah said, “Do you have experience at handling a wheelchair user?”

“My daughter uses a wheelchair, so I know the sort of things that cause problems. She’s a big fan, by the way. I’m only sorry that I’ve not been able to address any of these issues any sooner.”

“That’s perfectly understandable,” Sarah said, “Now if you’ll excuse me, it appears I have a lot of work to attend to.”

“Yes, Pri- Sarah,” the caretaker nodded, and left the room.

Sarah smiled. At least she had one member of staff on her side.

***

Sarah’s first day in the Houses of Parliament as Prime Minister was an interesting one. Although she knew her way around the Palace of Westminster very well, she was used to sitting at one of the back benches, on the very top row. All of the other seats had a flight of steps down to them. She knew that over the weekend a lift had been installed that would enable her to take her proper place in parliament, but she still worried that somehow, the access would go wrong.

Two guards nodded to her before opening the double doors to the House of Commons, where she was greeted with a round of applause. She was happy to see most members of her political party give a standing ovation, however ironic that may have been. Sarah moved onto the flimsy-looking platform lift that had been installed, and then began the longest and loudest descent into the House of Commons that had ever taken place. Finally, she reached the bottom, and took her place opposite her counterpart in the opposition, who fixed her with a long stare.

The House was called to order, and the days’ debates began.

“Forgive me, Prime Minister, but I am not going to take things easy on you because of your condition,” the leader of the opposition opened with. Sarah would have appreciated the sentiment had it not been said in such a condescending manner.

“In fact,” he continued, “I expect as much of you as I did your predecessor, although that’s not a great standard to reach, I know.”

Before Sarah had thought about it, she opened her mouth.

“Let me stop you there, sir,” she said curtly, before leaning into the microphone to address the whole house.

“No one should expect any less of me because of my wheelchair, or because I am a woman. Do not judge me by the standards of those who came before me, because I am not those people. In fact, you should expect more from me than any recent Prime Minister, because instead of participating in such farcical pettiness as to continually insult each other, I intend to debate and resolve real issues. Now if you have nothing constructive to add, I suggest we start to do what we are paid to do,” Sarah expected to be met with a stony silence, particularly from the opposition, but was astounded when every single politician in the room, bar herself and her rival, began to applaud loudly. Many even got to their feet, and it was several minutes before the house was returned to order.

After what Sarah judged to be a particularly productive day in parliament, when several pressing matters had been debated in detail, she was extremely happy to find that her small speech had made headline news. Her particular favourite of all the headlines was the one that called her “Wheels of Steel”.

***

“What’s on the agenda for today?” Sarah asked her personal assistant, a stern looking woman old enough to be her mother, and a close friend of the head of staff. Her assistant looked down her nose through her spindly glasses at the papers before her.

“Your first formal meeting with the Queen since your election, Prime Minister, at Buckingham Palace,” she informed the Prime Minister in a cold, clipped tone.

“Ah yes, I knew it was something significant. How silly of me to forget,” Sarah flashed a smile at her assistant, which instantly died on her face on recipient of a disapproving look.

Sarah was not surprised to find a large gathering of reporters clambering up the railings surrounding Buckingham Palace as her van drove onto the grounds. Sarah, not usually one to be overly concerned with her appearance, has been patting her hair into shape and checking her teeth for lipstick stains throughout the whole journey. She was relieved that their assigned parking spot was well out of sight of the reporters.

Sarah was escorted by the palace guards to an impressive room, with a ceiling that Sarah imagined must look tall even from standing height. The furniture around her was beautifully ornate, and fit perfectly with the rooms’ decoration. Next to it all, she imagined that her own chair looked rather shabby.

The doors opened precisely on time, and Sarah couldn’t help but resist the urge to stand up, even though she physically couldn’t. The Queen walked slowly into the room in a delicate, baby-blue outfit, followed by a parade of lumbering corgis with tongues lolling from their mouths. The dogs were very keen to explore the new Prime Minister, particularly her chair, and Sarah decided that she definitely preferred Simons’ affection.

The Queen seated herself opposite Sarah, and seconds later a butler appeared with a pot of tea and some biscuits.

“There’s some Yorkshire tea brewing in the pot, ma’am,” he said to the Queen.

“Ah, thank you, much better than that Lancashire tea Philip bought the other week.”

Sarah smiled awkwardly, her hands clasped in her lap to prevent them from being licked away by a corgi.

“Well, I must say,” the Queen began, “that ever since they put all the new ramps into this section of the palace for our meetings, I’ve had trouble keeping Philip from skateboarding indoors. I’ve told him countless times that the skateboard is for the garden only, but he can be ever so childish. He’ll ruin the carpet.”

Sarah suppressed a smile, but couldn’t help but laugh when there was a well-timed thump from outside the room, followed by the crash of something valuable-sounding breaking. The Queen rolled her eyes.

“Still, it’s been much easier for my darling corgis to move around, the stairs do trouble them so,” she continued.

“I can only imagine the difficulties they have,” Sarah returned politely.

“Now, to business-“

***

The following day, Sarah was booked to open a new school just a few miles from Downing Street. She couldn’t help but feel that in comparison to her usual duties, this would be a breeze. As the van pulled up outside the new building, a generic cube of bricks and glass, Sarah was greeted by the usual crowds. By this point the chauffer had moving the wheelchair in and out of the van down to a fine art, and Sarah had a few minutes to pose for photographs and answer a few questions, before heading to the crowd gathered on the playground, huddled beneath umbrellas against the summer rain.

A small stage had been built on the playground by a plaque on the wall of the school, which was still covered by little velvet curtains. A rickety ramp lead onto the stage, and as Sarah took her place on the stage, she said a private prayer for her own safety. Once on the stage, she didn’t feel much better.

The head teacher introduced the Prime Minister to rows of bored and cold children, most of whom seemed more interested in the news reporters by the school fence than the event itself.

“Now,” the head teacher said,” before we open the school, the Prime Minister has very kindly agreed to answer three questions. Raise your hands if you want the chance to ask her something, and be polite. You represent our school!”

A flurry of small hands immediately appeared over the children’s heads, and a girl in the middle of the group was chosen.

“Why are you in a wheelchair?” she asked innocently. Sarah had counted on this being one of the questions asked, and was certainly not offended by it, but the teachers looked heartily embarrassed.

“I suffered a really horrible illness as a child that left permanent injuries, and they mean I can’t walk,” Sarah answered calmly, hoping to reassure the embarrassed teachers. The girl who has asked seemed to be satisfied with this answer.

A second child, a boy this time, was chosen.

“How can you be Prime Minister from a wheelchair? My dad says its political correctness gone mad, but I don’t know what he means by that,” he queried. This time the teachers looked as if they wanted the ground to open up and swallow them whole where they stood.

“The job involves lots of things like sitting at a desk or table, doing paperwork, or talking to people. You’d sit in a chair to do them, so the wheelchair poses no difficulty there. What your dad means is that he thinks I’ve been elected purely because I’m in a wheelchair, and not because of other things like experience or knowledge, although I assure you that is not true.”

The teachers dared not brave another question after this; ten minutes later the school building had been opened, and Sarah was mingling with teachers and parents in the schools’ dining hall. Sarah actually found the questions posed to her by children to be far easier to deal with than some of the adults, who ignored the wheelchair to such an extent that it became clear that the wheelchair was all they could see. She was relieved when, after half an hour or so, her staff came to escort her home to deal with some more pressing matters.

As soon as Sarah had returned to her office, she switched on the small television in the corner of the room, where it was pre-programmed to a news channel. Immediately she was confronted with images of herself answering the children’s’ questions as the news reporters discussed the issue of political correctness in politics. Sarah rolled her eyes; she was surprised that it had taken this long for people to start such a discussion.

Pet Therapy.

In the middle of September, shortly before Jarred was due to return for his final year of university, we decided to adopt a hamster. Having had one as a teenager I already knew what resources we would need, and how to provide the best care for it, and so a couple of days later we had purchased and built a cage. Once it was kitted out with food, water, bedding, and chew toys, we were ready to adopt a furry companion.

Being unsure whether the nearby pet shop was accessible or not, Jarred went to purchase the hamster himself. He selected a 6 week old female Syrian hamster, with short black and white fur, and round, pronounced ears. Apparently, she had been in an enclosure with several others like her, but while she was running around the cage like a caffeinated Crash Bandicoot, the others were all huddled together in a ball in the back corner. He simply couldn’t ignore such an inquisitive and spirited little creature.

I was waiting at home when he returned with our new pet, who was in a little plastic carry-case with transparent sides. She was sniffing and running round, trying to take in all the new sounds and smells, one of which was me. She stopped in front of me, and put her paws against the plastic, sniffing the air vents expectantly.

We lowered her gently into her new cage, and almost immediately she began to explore. She was so small that she couldn’t turn her wheel without a little help to start it moving first, and climbing up the vertical tubes into each compartment proved to be a challenge. She was not phased, even when on multiple occasions as she neared the top, she lost her footing and slid all the way down to the bottom. Once she had visited every corner of her cage, she packed as much food as she could into her cheeks, grabbed some bedding, and began to make a nest for herself in one corner.

It didn’t take us too long to assign our little friend a name. She was christened “Tribble”, after the small, furry creatures that feature in an old episode of Star Trek.

Tribble is a great companion. Despite being nocturnal, she is relatively active during the day, often popping out of her nest for some food and water, or to rearrange her nest. The highlight of the day comes in the evening, as she wakes up properly; she absolutely adores running around the flat in her hamster ball, and as soon as we show it to her, she’s out of the cage and into the ball faster than Usain Bolt. Then it’s a case of changing her food and water, and perhaps adding a little bedding, or a treat to nibble on like a grape or slice of carrot.

Once a week, her cage gets a full clean, receiving fresh bedding as well as food and water. While Jarred disassembles the cage to clean it, I occupy Tribble in her little plastic case to prevent mischief, giving her a paper towel and a treat. She is now so comfortable with me that quite often, she will make a little bed out of her paper towel, and will curl up into a Tribble-like ball, falling asleep against the warmth of my lap.

It doesn’t matter how rubbish I feel, or how bad a day it has been, Tribble brightens every single day simply by existing.

Diary of a Hamster.

Monday:

The big human is always first to leave the human nest, wrapped in soft things that would make nice bedding. He go to food stash and makes brown liquid from powder. He then sit by my den, and switch on big screen with moving pictures. He control it with plastic thing that is bigger than me! It is also not edible.

I go on patrol of den when he sit by me. This way, he think I just patrol cage, not that I like his company. I don’t think he notice yet. On my patrol I eat, drink, and then pee in big wheel. Then I sleep.

The smaller, wheeled human come through later. She go to food stash and she swallow small, round things whole! She has some water, and then go again. When she come back, she is wrapped in different soft things, but if I try to borrow some she get cross.

I sleep.

When I wake up, smaller human has a screen, a bit like big one, on her lap. She is tap, tap, tapping on one part, and strange symbols appear on screen. She seem very interested in these symbols, but I do not know what they are.

I sleep.

I wake up again. Sometimes I’m alone, and I rearrange things in cage as prank. Sometimes they here, and I do patrol again to see them.

I sleep.

It start to go dark, and humans switch on mini inside sunshines. I don’t think they see in dark like me; I eat lots of carrot. They get bigger portion of food from stash, put it in pot, and stir it. Then they put it in smaller pots, and eat it. Then all the pots need wash, which big human does, while small human looks at big screen.

I get excited because I know after pot-washing time come playtime. They put me in big, blue force-field, and then let me run around their whole den! They can cross it in few steps, but I need lots of steps. While I run, I bump into things with loud noise, and the humans laugh. They point tiny screens at me sometimes, but I don’t understand.

In their nest room they have another hamster, black and white like me, in blue force-field like me. it only in one corner, on front of stash where soft bedding they wrap around themselves is kept. It annoying hamster. When I move, it copies. I run toward it, it run and stop at exactly same time. It follow me. When I try to scare it off, my force-field bounces me away. The humans seem to find this amusing, and make loud noises with voice.

They fill up my water and food stash, and hide treats around den. Sometimes I get carrot or courgette, but my favourite is grape. I love grape. They get my force-field and take me back to den. I hunt for treats, then sleep, because running make me tired.

After a bit I wake up. Humans still sat by me watching big screen. The small human swallows more round things, and then they go back to human nest. I think this is when they change into new soft bedding wrappings. At this point I start to run in wheel, making loud sound so they can hear me, and don’t miss me. It go very dark.

I sleep.

Tuesday:

The big human is always first to leave human nest…