Saturday, 23 July 2016


Today’s post takes on a slightly different tone to my previous written rambles. When I was first encouraged to write this blog I wanted from the outset for it to be a true and honest reflection of what life with a disability is like. I wanted it to cover the highs and lows that people with disabilities (and their nearest and dearest) experience. I wanted to challenge the image that mainstream media often paints, i.e. that people with disabilities are somehow less able than their mainstream counterparts in aspects of life including employment, family life and relationships. And I wanted to do all of this by making people stop and think. By making people laugh. By humanising and normalising disability. By tackling taboo topics and hopefully removing some of the stigma attached to disability related issues.

So far I have covered some of the funnier experiences that have arisen as a direct result of my disability. I have shared about my search for love and acceptance. I have written about some of the downright ridiculous situations I have found myself in.

But today I want to share about something a bit grittier. Something people with disabilities are often embarrassed to mention for fear of making others feel awkward. Tonight I want to share a little bit about life with chronic pain. Something I live with on a daily basis.

Right now I am in the middle of a particularly fierce battle with pain. It’s a war (for want of a better word) which has rumbled on for as long as I can remember, but which has intensified over the last decade as I have experienced a number of complications both post-operatively and as a result of the increasing demands placed on my body as I have grown. Acute, traumatic, nociceptive, neuropathic, mechanical, visceral. All words used by healthcare professionals to describe the pain I have experienced over the years. Words which never quite seem to hit the nail on the head in terms of defining the impact such pain has on the functioning of a person.

So let me tell you a little bit about life with chronic pain.

Pain is an indecisive beast; no two days are the same. Some days the beast can be quiet (ish). Other days it feels like a hippo is tap dancing through your body. Whilst wearing stilettos. Whichever sort of day it is, there will always be a consistent nagging pain which never quite leaves you.
The thing with chronic pain is that you go through phases. Phases where things feel vaguely manageable and phases where everything seems horrendous. Unfortunately the last few weeks have been the latter. It has genuinely felt like a whole troop of hippos have been practising for a dance show, stamping their pointy stiletto-wearing feet throughout my entire body!

Nevertheless, life has continued. In case you didn’t know, I have the privilege of working as a Specialist Speech and Language Therapist in neuro-rehabilitation. This means that I have the opportunity to get to work with some incredible individuals who have experienced illness and injury we can only imagine. One such patient commented to me last week that I appeared more subdued than normal, and that my smile “didn’t quite meet your eyes today”. She asked me why and I told her that I was in quite a lot of pain that day. She smiled and commented that she’s slowly learning to live with her newly acquired chronic pain (post nerve injury) but that her family were having a difficult time getting their head around it. We talked about the things we would want people to understand about chronic pain and I thought I would share a few of our thoughts. In no particular order…

1.  We’re not trying to be grumpy, we promise

The thing with chronic pain is that it is UTTERLY EXHAUSTING. I’m not talking “a little bit tiring”, I’m talking the kind of tiredness that no amount of sleep seems to cure. The kind of tired which makes every single atom of your body ache and cry out for bed time. However when that blissful moment of crawling into bed finally arrives, it seems that every pain fibre in your body chooses that moment to come alive once more. Your friend the tap dancing, stiletto wearing hippo of pain puts on his sharpest heels and has a boogie around your body. Cheeky bugger.  So when we get up the next morning feeling totally unrefreshed, please don’t take our grumpy and aloof behaviour as a sign that you’ve done something wrong or that we are in a mood with you. It probably just means we are absolutely exhausted!

Words of advice from my fiancé George: “In this situation, I just throw chocolate at Em and run away”

Note from Emily: “It works”

 2.  Being in pain does not stop us from wanting to look good

“But you look great?!” is a phrase I often hear when I’m asked about my pain levels or how well my ongoing medical issues are being managed. Taking an interest in my appearance - doing my hair and putting make up on each day - is all part of helping me to feel “normal” and allows me an element of control over what can be an unpredictable journey with chronic pain.  On really bad days, doing my hair and putting my make-up on is akin to gearing up for battle with make-up my war paint and a pretty top my body armour. Just because someone’s make-up is immaculate and they don’t look poorly doesn’t mean they’re not struggling. That being said, weekends are often a chance to just totally switch off from the world and I’m regularly seen sporting a massive hoodie with my hair scraped back from my face! The public is not quite ready for that sight…

3.  “Just take another paracetamol” will not work!

I promise you that if a person with chronic pain could end their pain by taking just one more paracetamol, they would race you to the medicine cupboard! Fact of the day.

4. Pain does not stop us from smiling (well not all of the time) 

People who don’t know me well have often been heard to say “but she smiles so much, surely it can’t be that bad?” The truth is this - the presence or absence of a smile is not a reliable indicator of the pain levels of a person. I have been fortunate to have grown in a family purporting the power of the “positive mental attitude”. Throughout the challenges and triumphs of the last 26 years we as a family have found that smiling and laughing is not just good for us physically, but is good for us psychologically. Any person with chronic pain (and their friends and family) will tell you that the biggest battle with chronic pain is the psychological one and that this is where the battle is won or lost.

5.  We’re not “sufferers”

You may have noticed that throughout this post I have avoided using the phrase “chronic pain sufferer”. This is something I have done deliberately. My patient pointed out very eloquently “I’m not a sufferer, pain is not something which is done to me. It is something I experience. But I also experience joy, happiness and success. Our pain does not define us”.
I could not have put it better myself.  

6. We’re not being anti-social, we’ve probably just run out of spoons

A lady by the name of Christine Miserandino penned “The Spoon Theory”, a wonderfully apt description of what it is like to live with a disability. She explains that each person with a disability is given a finite number of spoons for a day, with spoons serving as a form of currency to be spent in order to complete daily tasks. Each task needing to be completed costs a spoon. Whether this is as trivial as getting out of bed or climbing the stairs or as big as giving a presentation at work, each of these tasks has a cost measured in spoons. Whereas our more able bodied counterparts have an infinite number of spoons, a person with a disability does not. Every little action, movement or choice costs the person with a disability a spoon. Staying up late to watch a movie with friends will use up precious spoons meaning that we might find it ten times harder to get dressed the following day. Overstretching ourselves to go to a friend’s birthday dinner at the end of a long working week will mean that we run out that day’s spoon allocation and have to eat into tomorrow’s spoons. Too tired to drive home, we have to hail a cab. So although it may come across as us being lazy or flaky when we cancel at the last minute, it may just be that for whatever reason, we have run out of spoons. It doesn’t mean that we don’t want to see you. Chances are, we are sitting on our sofa wishing we were with you.  

Thank you for reading this far! I hope that you have found this post vaguely insightful - I’d love to hear from you if you have any thoughts or questions.

Emily x

p.s. please follow this link to read more about “spoon theory”

Sunday, 3 July 2016

"You'll Do"

Let me pick up the story from where my last post ended... 

To recap, I'd had a series of disastrous dates with guys I had met via Tinder. I was about to abandon all hope of finding my One True Love and was planning my life as a reclusive Cat Lady. That is, until George's face appeared on my app. As they say, the rest is history...

Here's how our story goes. I was laying in bed one Monday night and thought I'd have my last hurrah on Tinder. I was coming to the end of my tether with the whole online dating malarkey and was all set to delete the app the following day but felt one final gander was required. Now I can be quite picky and after declining a number of guys, George's smiley face filled my phone screen. I swiped right and to my delight found that we had matched! 

Not long after we matched, George struck up conversation with an opening line I'll never forget - "Good God, what is a woman like you doing on an app like this?". We swiftly struck up a rapport and I found myself thinking that I might have actually found someone who could string a sentence together and who wasn't your typical "lad". We messaged for a good few hours until he asked for my number and I insisted on some sleep as I was heading into hospital early the following day for some chronic pain management injections (this bit of information was omitted from our conversation at this point). We bid each other goodnight and that was that. 

The following day I was obviously quite distracted. I was at the Royal National Orthopaedic Hospital for pain killing steroid injections into my lower back - all part of a plan to manage aspects of my chronic pain - and the last thing I was thinking of was the boy I had recently been talking to on Tinder. That being said, as I arrived back on the ward from theatre, my phone buzzed and there was George asking how my day was going and what I was up to. Now my previous post tackled the range of ways a person with a disability can manage the delicate issue of disclosing their condition. I decided on this occasion to put myself out there and reveal that I have a disability and am currently in hospital for treatment to manage particular difficulties which arise. How else could I explain the fact I wouldn't be able to meet up for a few days? I didn't want to generate some ridiculous excuse which I would no doubt forget at a later date. 

His reaction surprised me. It didn't seem to put him off one bit! We continued talking until later in the week when he asked if I wanted to meet up for some food. I was due to be flying to New York for my birthday the following week and life was pretty busy in the run up to my departure. However I knew that I wanted to meet him before I went and he certainly was keen to go out sooner rather than later (he later revealed that he was so nervous, he knew if he had to wait any longer he would "bottle it"). We arranged to meet for lunch at a pub local to me on Saturday, about five days after we started talking. I was really excited! 

When I first started online dating I devised a series of tactics which with hindsight I realise were more self protective measures. One of these was that I would always arrive somewhere first to avoid the awkward stare as I walked in on two crutches with my gait rivaling that of Pingu. I employed these very tactics for our date and got myself to the pub nice and early. George appeared pretty much bang on time (brownie points) and even arrived with flowers (extra brownie points)! 

Lunch flew by and it soon became early evening. We had talked non-stop and had discussed every detail of my disability, even down to the nitty gritty bits which I would never usually tell on a first date. We both admitted that it felt like we had known each other for a long time and agreed that we wanted to see each other again thus setting a date for when I returned from New York. However the following morning we decided that this date was too far away and met later the day to see a film. (NB. This has become a source of contention in our relationship. I'm adamant we saw Paddington. He's adamant we saw Hunger Games. Obviously I'm right, but I think this will be debated until we are both old and grey!).

After those initial dates, time just seemed to fly by. George and I soon became "official" and our lives became intertwined. I had finally met someone who accepted me in every conceivable way, from the wonky walk to the catheter and back to the wheelchair. It's not that he didn't and doesn't care about these things, its just that he doesn't see them as the traits which define me. In his words, these things are part of what have made me the person I am, but they are not my identity. 

I am fortunate that I have found someone who accepts my limitations and helps me to overcome these and at the same time pushes me to further develop and utilise my strengths to become a better person. I have found a guy who will laugh with me (and at me), who will support me when I am struggling and who will kick me up the butt when I'm feeling sorry for myself. He really is one of a kind. 

I've said some awfully mushy things about George in this post, so I'll end it with a short story which sums up our relationship quite nicely... 

George and I have a catchphrase which came from one of our more memorable Saturday adventures. We were wandering around the RAF Museum in Hendon with his young nephew when he stopped my wheelchair, turned me towards him and told me he loved me for the first time.

I took a few seconds to register this, shrugged my shoulders, looked him in the eyes and with a smile told him "meh, you'll do". 

Sunday, 24 April 2016

Disability Dating


After a long hiatus from writing “The Girl With The Pearl Scooter”, I am making my glorious return to your computer screens! The reasons for my absence are plentiful. During the last 18 months I have met a guy, got engaged, and started a new job. To add to the grown up-ness we even bought and moved into our first home together this month! So plenty of exciting developments in my world. Alongside all of these milestone events, the usual highs and lows of living with a disability have featured and these I will discuss over the next few blogs. In the meantime, happy reading!

Disability Dating

I’ll kick off my return to blogging by writing on a topic people regularly ask me about – what it is like to date with a disability. The topic of love and relationships can be a delicate subject for anyone. But for someone with a disability it can be particularly fraught and is often laden with many deep and dark “what ifs”. Meeting the right someone is challenging in a day and age where people are so heavily consumed by their jobs and are so attached to social media that they forget to go out and enjoy themselves and the company of others in an environment free from the intrusion of technology. Rare are the days where people meet their future partner in pubs, libraries, cafes and parks. More commonly my generation are meeting future partners via dating apps and internet websites and in a world where judgements on a person’s worth seem to be made within the first 30 seconds having a pair of crutches, a walk similar to Pingu and often a wheelchair in tow can mean that the odds often feel stacked against you right from the offset.

That being said, in early 2014 I decided that if I can’t beat technology, I might as well join it. I was feeling settled and happy in my own skin and I decided that it was time to take my first foray into the world of online dating. This is where our story picks up and I will go on to share a few of the lessons I learned throughout this process whilst sharing a few of the funnier and more shocking experiences.

Lesson #14 of Life with Emily:  You will only be happy with someone when you are happy with yourself

I began my online dating adventure with Plenty of Fish and Tinder and I must admit, it was an eye opener! Without wanting to sound arrogant, I was immediately quite popular and was enjoying the attention greatly. However, when it came to meeting up with people, I began to get nervous. When you meet someone in a bar or are introduced by friends, your prospective date is immediately aware of your disability and has the opportunity to decide in that moment if they want to continue with this particular interaction. When you meet someone online, unless your profile picture or blurb states that you are disabled or shows a crutch/wheelchair, there is a very significant piece of information yet to be shared with your prospective date.

Different people hold different opinions about how best to deal with this scenario. Broadly speaking, there are three options:

1)      Don’t tell your date until you meet them in person

This for me was not an option. Having been on the receiving end of that split second recoil and look of shock (followed by the awkward silence) when standing up and reaching for my crutches having been chatted up at a bar, I can 100% tell you that this is a bad idea. Furthermore, I really do not feel that it would be fair on the guy that I was meeting and immediately puts him in an unfairly awkward situation. With me, what you see is what you get, and if I had not at least introduced the idea that I was a little bit “different” prior to meeting up I think I would’ve have been doing both my date and myself a massive disservice.  

2)      Tell your date everything about your disability before you meet them

This is something I tried early on in my online dating adventure and controversially I must admit that it was not my favourite option! When Googling “Spina Bifida” a plethora of information appears on your screen and in truth, paints a pretty horrendous picture. Although my Spina Bifida is severe, I manage to adapt many activities to be able to participate in some way, be it slightly modified or very modified. But, when presented only with the results of a Google search, I can think of nothing more terrifying and off-putting for an individual who knows no better! It certainly explains why all of a sudden a few matches I had made mysteriously disappeared right after “Spina Bifida” was mentioned.

That being said, the benefit of this option is that it provides an immediate way to exclude those individuals you really don’t want to meet. Sharing your disability status candidly with your potential date leaves you wide open to being asked a whole variety of questions ranging from the sensible to the downright weird: I have heard them all! The topic of disability certainly brings out the weird folk. I have been asked everything from “do you wear splints and if so, do you wear them to bed?” to “can I help you catheterise?” **SHUDDER** I can assure you that these individuals were not privileged with my presence on a date!

3)      Mention your difficulties and warn your potential date that you will be arriving on crutches but save the details for a face-to-face conversation

This is by far my preferred option. Knowing that my date is already aware that I have some sort of disability is reassuring as I know I will not be faced with immediate shock! It avoids making the first ten minutes of meeting even more awkward than they already would be and allowed me the opportunity to explain my condition to someone in person. Hopefully when someone meets me, they will realise that despite my disability, I have an awful lot to offer and can be quite good fun! I can wholeheartedly vouch for the success of this option with all guys I went on a date with telling me that they appreciated my honesty prior to meeting up and if they were successful in securing a second date, telling me that Googling Spina Bifida is scary!

Lesson # 15 of Life with Emily: Honesty is the best policy – no matter how scary.

Regardless of how you go about this initial disclosure (or lack of disclosure), the real fun and games begins when you start going out on dates with the individuals you have been talking to. This is where you start to get to know the person properly and as with all people trying to find a significant other, get to know the nittier grittier aspects of a person’s character.  I have been fortunate to meet some truly lovely guys who have been kind, gentle and funny and although we were not meant to be, showed me a really good time and treated me kindly.

On the flip side, not all of my dates were so successful and there is one particular series of dates coming to mind. I had met this individual on Tinder and trialled option 3 to good success. He asked sensible questions and reiterated his interest in meeting up and taking me for dinner. We met up, had a lovely dinner and arranged to meet up the following week. On arriving at date two, alarm bells started to ring. He was asking me questions about how to “fix” Spina Bifida and whether I had pursued all avenues of medical treatment. I explained the congenital nature of my condition and the fact that it is permanent with no cure. He went quiet and we continued our date. On meeting for date three, he was straight onto the topic of Spina Bifida. He explained that his parents were flying into the country in a few weeks and that he wanted to introduce me to them (which already freaked me out – slightly too soon?!). He then continued to explain that he could not introduce me to his parents in my “current state” and proceeded to present me with a list of doctors for me to meet with. For one stunned moment, I wondered if I had entered into some sort of alternate reality and looked around to see if I was on a hidden camera show. Unfortunately, this was not the case and before me was a very ignorant and naïve person. I calmly explained that this was not appropriate and that I did not want to be with someone who wants to fix me and is embarrassed to introduce me to family and friends as I am. I then proceeded to pick up my water glass and throw its contents in his face! I never thought I would have that movie moment in my life, but it was too good an opportunity to miss! What makes me laugh to this day is that his list of doctors included a microbiologist, a gynaecologist, an ophthalmologist and a dentist none of whom could help me in any way!

Yet as with all things in life, you take the good with the bad and I am so pleased to report that I have endured the bad and found the good with regards the dating game. A few days before giving up on Tinder entirely, I matched with a guy called George. He was kind, funny, intelligent and not remotely creepy. I actually took option 2 and disclosed my disability (because I was in hospital at the time of talking and needed to explain why I couldn’t meet for a little while) and was met with concern purely regarding my current admission and interest into Spina Bifida’s impact on my life. He did not seem remotely put off and two weeks later we met up for our first date. Ten months later we were engaged and 14 months later we moved in together!

More about George to come…

Lesson # 16 of Life with Emily: Good things come to those who wait!

Tuesday, 5 August 2014

An Ode to Siblings

An Ode to Siblings

In April of this year hundreds of people across Facebook took to their timelines to celebrate “National Siblings Day” by posting photos of themselves with their brother or sister and declaring reasons why their sibling is the best. This got me thinking about my own family...  

Siblings in the family of an individual with a disability sometimes get a rough deal. Routine hospital appointments, illnesses and various operations or interventions mean that the child with the disability (through no fault of their own) often has the monopoly when it comes to the time, attention and resources of the family and yet these brothers and sisters regularly deal with it with outstanding grace and maturity. My brother is no different. 

So I thought I would take this opportunity to pay homage to one of the unsung heroes in the life of a person with a disability. In my case, this happens to be my brother David. 

Two years older than me, David and I have always had what you could call a “banterful” relationship. He teases me rotten and drives me nuts, but there are some things I am particularly grateful to him for…

1. He got me crawling

Mastering the art of crawling, standing, and walking was a particular challenge for me in my earlier years. But fortunately for me, my brother was on hand to help! Being a clever boy, David figured out that in my pre-crawling months he was able to steal a toy from me, shuffle back a metre or two, and be safe from my grasp as I could travel no further to reach him. After months of annoyance on my part, I decided that enough was enough and launched myself at him…much to his surprise. Apparently his face was a picture as I steamed towards him on all fours to reclaim my stolen toy!  He’s been careful about stealing my stuff ever since…

2. He got me standing
After months of false starts, and many hours spent in some contraption called a “standing frame”, I finally managed the whole “being upright” thing thanks to David. Being the younger sibling meant that I was always interested in what my older brother was up to and wanted to be at the centre of the action with him. One evening David had disappeared for a bath and I wanted to know where he was. The story goes that I crawled into the bathroom, looked around for him, heard his voice, grabbed the side of the bath and pulled myself up so that I could see David sitting naked in the bath…again, another surprise for that poor boy!


3. He helped me to walk

When I was young I had intensive physiotherapy courtesy of the NHS. I was visited regularly by a lovely physio and my parents engaged in a daily routine of exercises to help build my muscle strength and tone. In one physio session, when I was around 3 ½, I decided that enough was enough and it was time to try this walking malarkey. This of course was a great result for me and my family, especially as medics had suggested that this might not be possible for me.  The ever-helpful David was, of course, determined to aid my mission to be vertical. He assisted me by acting as ballast in my toy brick truck which I used to lean on to give me support as I tottered around. Here I am trying his seat out for size!


4. He turns up willingly in times of need providing hugs, brotherly advice and of course – food!

David will call me up on things if I’m being silly, often telling me to “man up” and get on with it but is always one of the first to give me a cuddle when things have been really bad. Whenever I need him he is there and will move heaven and earth to support me.

In my final year at university I developed sepsis and was admitted to hospital as an emergency. I felt incredibly unwell and with my parents over 130 miles away in Norfolk, it was down to David to swoop in and save the day. Being the social butterfly that he is, his response, when I rang him at around 8.00pm on a Saturday to tell him I was in A&E’s Resus, was “Oh crap, do you need me to stop drinking?” Knowing that he was potentially going to be called in to swoop to my rescue, he finished his pint and remained on standby to hear what the next steps were. I was admitted to the ward later that evening and David was stood down until the following morning when he arrived at the hospital with chocolate buttons, diet coke and catheters – the essentials! What a legend. 

Lesson #12 of life with Emily: Brothers aren’t all bad! 

Ladies and gentlemen, raise your glasses to our unsung heroes!  

Wednesday, 19 February 2014

Tramadol Nights

For a change, this blog is about an adventure had without Pearl.

Sometimes with disability comes an issue with chronic pain. For me, chronic pain has developed over the last five years in part from complications from surgery and also as a result of wear and tear on my body in general.  

Although chronic pain isn’t funny in itself, some of the methods of managing it have amusing outcomes. They’re not called Tramadol Nights for nothing!

My Pharmacist sources medications from a number of different manufacturers. For months I had been taking Tramadol from one specific manufacturer and had experienced no adverse side effects. The next time he dispensed Tramadol to me, it was from a different manufacturer. Now, you would think that Tramadol is Tramadol and that sourcing from a different manufacturer wouldn’t make any difference…but you’d be wrong.

Here’s what happened one night…

I’d taken my medications as normal and settled down for the night. I had my pillows, my duvet and an extremely comfortable mattress…the perfect combination for an excellent night’s sleep. I drifted off to sleep and at some point in the night had a very strange dream.

Imagine Watership Down but with kangaroos and not cuddly bunnies. My dream began with me in a dugout, clearly in the middle of some sort of battle. The colours were vivid, the sirens were loud and it all felt very, very real. Next thing I knew, my brother had joined me in the dugout. He was kitted out in full battle dress, ready to wage war against the invading kangaroos; I was still in my PJs. He passed me a gun to fire which I soon discovered had no ammunition. Turning to my brother to ask him for ammo, he promptly passed me some plastic bullets (think the toy soldier type). I asked him how he thought this was going to help, to which he shrugged. At this point, Mum arrived in the dugout (well she would, wouldn’t she? Never one to miss the action!) Mum was also kitted out in battle dress, and being a typical Mum was concerned about my lack of appropriate clothing. Turning to Mum I exclaimed “I haven’t got a helmet and the kangaroos will get me!” Being a Mum, she was of course prepared for this scenario. Reaching into her handbag, she produced a colander which she promptly plonked on my head saying “There you go dear, that will protect you.” before continuing to wage war against the encroaching kangaroos.

Now, these kangaroos were huge, scary beasts and we were starting to realise that three people waging war against an army of kangaroos was indeed a losing battle. We had to hope that they were still vegetarians! Wondering how we would escape from our dugout, I exclaimed “Oh no, what are we going to do?”

Then Dad appeared.

If you’ve met my Dad, you will know that his midlife crisis was resolved by becoming a hot air balloon pilot, complete with his own balloon. In the midst of the war against the kangaroos, Dad appeared with his hot air balloon to save the day. Lowering the basket into the dugout, we all clambered aboard and just in the nick of time, Dad flew us away to safety. Who needs Mary Poppins and her umbrella when you’ve got a Dad and his balloon? As we drifted off to safety, we surveyed the carnage below, hoping the kangaroos couldn’t jump high enough to reach us.

I awoke in the early hours of the morning wondering what was reality and what was  dream. I must admit to getting out of bed and looking around my room to make sure there really were no kangaroos! Most of us forget dreams fairly quickly, but this is one I will never forget.

My interesting experiences with Tramadol do not end here. I’ve had one more slightly awkward experience… one day I had a stinking cold and was dosing myself up with Sudafed. At least I thought it was Sudafed. Unfortunately, Sudafed and Tramadol capsules look incredibly similar and it turned out that I’d been taking Tramadol instead of Sudafed… oops. The headache was definitely gone but I couldn’t understand why my nose was still blocked! On this occasion it didn’t cause me a problem, but it is something to really be careful of. 

Lesson #10 of life with Emily: Make sure you read what it says on the packet!
As a side note, I’ve built up an extremely good relationship with my Tramadol dispensing Pharmacist (he says I single-handedly keep him in profit). This is the kind of banter we have…  I went in close to closing time and asked him to dispense a prescription for me. He turned to me and said “Sorry Em, I can’t dispense to you today”. Taken aback, I asked him “Why, have you run out of things?” to which he responded “No, I’ve got a paper cut and it really hurts”. What a joker. 

Lesson #11 of life with Emily: Pharmacists do have a sense of humour!

Monday, 30 December 2013

Six Millie’s Cookies, One Police Dog and an Amorous Drunk

Sorry for the radio silence of late – it has been a challenging year both medically and academically so my blog has been a little neglected! First off, I’ll get my one moment of self-congratulation out of the way and let you all know that I am now officially a qualified Speech and Language Therapist with First Class Honours! So now to catch up on the blog…

As you will have discovered from previous posts, Pearl and I often find ourselves in interesting situations. The story told in this post goes back to an adventure we had in our second year of university and involves Millie’s cookies, a Metropolitan police dog and a rather over-friendly drunk man.

Let me set the scene for you.

A couple of weeks before finishing for the Christmas holidays, a friend from home came to visit. We’d had a lovely day exploring London but the time had come for her to head home. Having a sense of direction only just better than mine, she asked if Pearl and I would accompany her to the train station. A perfect opportunity to be a good host and  to buy myself some Millie’s cookies, I thought.

Arriving at the station we were surprised to be met by the sight of around a dozen members of the Metropolitan Police in full uniform, some with rather intimidating dogs sitting obediently at their heels. We deduced (from the sea of football shirts) that there was a big match playing somewhere and that the police were either expecting a bit of trouble, or wanted to ensure that nothing kicked off (no pun intended).

Having safely deposited my friend at the appropriate platform, Pearl and I began to make our way back towards the cookie stand and on the way acquired a new “friend” in the form of a rather inebriated gentleman. This over-friendly fellow seemed to have taken a shine to us and as we passed the time of day on our way to the concourse with the all too predictable banter of “awww give us a lift sweetheart” I began to wonder how I might part ways with my newly acquired friend. After a near miss with a security bollard (him, not me) I spotted the signs for my target destination and seized the opportunity to bid him adieu and head to buy some goodies. I waved him goodbye and with a smile on my face watched as he tottered his way across the concourse and out the exit.

Elvis has left the building…or not.

Police men (and the tails of their furry friends) in mind, Pearl and I carefully navigated our way to take up our place in the Millie’s Cookies queue. Taking the opportunity to indulge in a spot of people watching, I unintentionally managed to catch the eye of the policeman (complete with dog) nearest to the queue. Caught in the act of ogling, I flashed him my best “I’m-totally-innocent-please-don’t-arrest-me-smile” and a conversation between us began. Please see below for a brief and abridged transcript of the opening of our conversation.

*smiles* Hi
Hello, expecting a busy one?
Yeah definitely looking to be busy. Nice wheels by the way…
Ah thanks, glad you like them! I promise I didn’t mug an old lady for them…
*raises eyebrows*

Now, any person with an ounce of common sense wouldn’t even think of suggesting to anyone (banter or not) that they had mugged an old lady for a mobility scooter, let alone a policeman with a big, furry German Shepherd.


Fortunately for me, I was saved from this potentially awkward situation by the Millie’s Cookies lady and the return of my old friend the intoxicated gentleman. Phew. 

Having chosen and paid for my yummy treats, I reversed my way out of the queue (without running over the paws of one increasingly friendly police dog) and pulled up alongside the policeman as I packed my goodies into my handbag. This once docile dog was swiftly becoming my number one fan, and, rising to all fours, began sniffing my handbag with great alacrity and giving me his best “come hither” eyes – all in the name of a cookie I am sure. Joking that I had found a friend for life, the policeman suggested that I look his dog straight in the eyes and firmly say “no” whilst being fully aware that his canine companion would capitalise on the “puppy eyes” and try to guilt me into giving him a chocolatey treat. Apparently my furry friend was new to the job and this was proving to be an excellent “training exercise”. Glad to be of use!

Lesson #8 of life with Emily: Millie’s Cookies will earn you the undying love of a beautiful German Shepherd police dog.

Meanwhile, the intoxicated gentleman decided to come over and make himself known once more. By this point he was indeed “merry” and becoming increasingly zealous in his declarations of love for Pearl and I. By now the interest of both the policeman and police dog had been piqued. With one eye on the cookie and one eye on my amorous friend, the dog let out a low growl (I’m not sure if he was more bothered by the merry man or by not having been fed a cookie yet) and the policeman suggested my merry friend took a step back. Asking me if I knew this individual, I explained to the policeman that I had met him previously down by the platform and that although I’m sure he was a lovely person, he was not in fact my “one true love” as he proclaimed himself to be. Despite his valiant attempts, my inebriated friend was unable to convince the Metropolitan’s finest (and myself) that he and I were “meant to be together forever” and the kindly policeman asked if this gentleman was “becoming a nuisance”.

Whilst he had been totally harmless thus far, it was getting late and dark and Pearl and I needed to trundle fifteen minutes across London to make it home. Giving his colleagues what I affectionately nicknamed “The Nod”, two policeman (who collectively were about 13ft tall) appeared and taking my new friend under the arms steered him across the concourse and towards the exit in the most gentle and amicable manner. I could see daylight between his feet and the floor! As the shouts of love from my inebriated friend rang out across the concourse, my attention returned to my brown eyed furry friend who was indeed turning on the charm! Asking his handler for permission, I tickled him behind the ears (a big disappointment I’m sure…he definitely wanted the cookie!) and thanked them for handling my friendly fellow so well.

“All in an evening’s work Ma’am”

With that, I said goodbye to the most beautiful dog I’d ever seen (and his lovely handler) and made my way to the exit, confident in the knowledge that the people of London are well looked after. In the words of my new favourite policeman – “you know our number”.

Lesson #9 of life with Emily:  Never a dull a moment with the Metropolitan Police! Thank you for your courtesy, good humour and service with a smile.

Sunday, 20 January 2013

Oh boy, what a first term!

Let me pick up where we left off, back in October 2012…

To recap, my beloved Pearl had been taken ill on the roads of central London sparking a rescue mission by a lovely bunch of strangers. Due to the kindness of my new friends, Pearl and I made it home safely and the next day, Pearl’s supplier was phoned to see if a Scooter Engineer could come and diagnose her mystery illness. He arrived on Saturday morning (£87.50 callout charge – OUCH!!) and, following some tests, declared that he had “no idea”, referring Pearl to a specialist Scooter workshop to see if she could be fixed.

With Pearl out of action, I was relying heavily on my trusty car and my even trustier friends who were willing to heave, push, shove and lift not just me, but my shopping and various other bits and bobs. They quickly became adept at assembling my wheelchair with one friend exclaiming “it’s like a formula one pit stop!” (only she wasn’t as fast……).

All seemed to tick along nicely for a couple of weeks and we appeared to be on an even keel.  Pearl was still out of action, with the Scooter Engineer trying to suss out what was wrong with her, and my foot (which you might remember was in plaster) appeared to be healing nicely. Whilst it was incredibly awkward not having Pearl, my friends and I were making it work (Cheese alert: I just can’t thank them enough).

Unfortunately things were about to become a bit more interesting. I started to feel rough but battled on for a day or so, thinking that it was the tail end of an infection that I had previously had - but how wrong was I? That Saturday evening I decided that the best thing to do was to visit my local A&E to get a course of oral antibiotics. Now this felt over-dramatic to me, but the parents were away for the weekend so TLC at home was out of the question and it would be the out-of-hours service anyway, so off I pootled down to A&E. Here I discovered that I was apparently NOT being a drama queen…  After only a twenty minute wait I was called in by the triaging GP who agreed that my symptoms were due to a previous infection but did NOT agree with my proposed treatment plan of oral antibiotics. Claiming that I looked “rather poorly”, he took my observations and looking rather surprised, turned to me and said “you’re the most smiley, seriously unwell person I have ever met” - an accolade I received with pride! It was off to Resusc immediately as apparently a temperature of 41°C, a heart rate of 177 and a blood pressure of 90/60 are not good statistics to have.  In short, I had developed a massive kidney infection and had developed sepsis. Oops!!

I then spent a joyous two-night sleepover in the NHS’ equivalent of a hotel (central London, nice view from the 14th floor) whilst I received IV antibiotics and IV fluids (for your information - the ‘room service’ food wasn’t quite up to the standard of the Ritz) and was helped along the road to recovery by some incredibly caring and funny staff.  Unfortunately for Dad, this particular hotel didn’t have a car park and he was less than impressed to get a £60 penalty while coming to visit.

Lesson #5 of life with Emily: There is no such thing as an even keel.

After two weeks of Doctor enforced recovery at “home” home with my parents, I was ready to return to London WITH A WORKING PEARL!  The Scooter Engineer was still clueless but Daddy Steward had a chat with the owner of the Mobility Centre in Cromer (where mobility scooters outnumber seagulls) who instantly diagnosed a severe case of dodgy batteries, recommended immediate transplantation and provided the necessary organs. After some rigorous testing by Daddy Steward - involving a 58 year old man whizzing around the block for hours on a scooter barely big enough for his rugby playing frame (“his fat arse”  according to Mummy Steward) – and generating much comment from intrigued neighbours, Pearl and I were  good to go.

We were delighted to be reunited and resumed our adventures back in London where we whizzed around to our hearts content having many an adventure to and from lectures, perusing the aisles of Waitrose during lunch hours and the joys of the Kings Cross shopping mall every so often.  Back to normal at last.

So whilst all that had been going on, I’d been making weekly trips to see my surgeon for a plaster change and wound check (NHS frequent flier miles were piling up!) as you may remember that I had a pressure sore on my right foot? Everyone seemed happy with my progress until we hit the very end of October and things got interesting once more.

My foot and ankle had swollen dramatically and a deeper probe revealed it hadn’t been healing properly under the scab. It had become infected and was generally rather “gungy” to use my Consultant’s favourite technical adjective. So it was yet another course of antibiotics, an MRI, and a “come back in a week”.  A week later he gave the news that he needed to operate to debride the wound and remove a bit of prominent bone under the big toe joint. He said the incision would be small and it would allow the wound to heal better. That was Tuesday – “come back on Friday” he says cheerfully. Now I don’t know what you think a small incision looks like but punching a hole as big as a 50p piece right down to the big toe joint doesn’t fit my idea of small. He took part of the tendon as well, telling me that I didn’t really need it! 

Fortunately all the faff and hassle has been worth it and has speeded up the healing process dramatically. Six weeks after surgery and thirteen weeks after first being put into a cast, I was free from plaster just in time for Christmas. Best present ever!! It’s still healing well as I write, but there is a way to go yet.

All in all, it’s been an eventful few months. I have nothing but positive things to say about my care. It really has been exemplary.

Lesson #6 of life with Emily: We moan a lot about the NHS, but it really is a privilege we take for granted despite all of its faults.

I have been blown away by the kindness, generosity and concern which has been shown to me by friends, family and complete strangers and am pleased to say that what had the potential to be one of the most difficult periods of life turned out to be one I can look back on and say:

Lesson #7 of life with Emily: The world is not a bad place to be.