The Working Days.

After an unsuccessful stint in the NHS which ended in redundancy a mere seven months after it began, I was lucky enough to find a new role in the medical research team at the university where my adventures began, and was only out of work for a little over a month. I promised many moons ago that I would write about being employed when I got there, at the time not realising that my upcoming work in the NHS wouldn’t make for good reading. Once there I decided to wait for something better to come along, and in a rare instance of good luck, something did.

The alarm rings at 6 am and I groggily emerge from the covers to eat the breakfast provided to me by Jarred, while he rushes to get dressed and catch the bus out to his own job. Often I will read for a short while before going to take my medicines and get dressed. I force my unruly curls into something resembling a neat bun and apply minimal make-up, before checking emails and social media. At 8.30 am I start my commute.

The university is near enough for me to commute as a pedestrian, ploughing through the crowds at bus stops and silently praying that one day they will realise I’m as a regular a commuter as they are, and figure out that keeping the pavement clear might be helpful. The route is probably only a mile long but the crowds make the journey feel longer, and I usually arrive at the office a few minutes before 9 am (depending on how many people took the stairs that morning). While I wait for my computer to wake up I get a hot drink from the nearby kitchen, and then I get to work.

My actual role in medical research is somewhat difficult to describe as it’s more classified than James Bond’s butthole, and disclosing too much could lead to me facing criminal justice (let alone getting fired). However, as always I am utterly committed to fan service, so here we go.

Every medical research trial has a team of people behind it who take the study design as instructed by the clever people in lab coats and actually make it happen. This team deals with practical and ethical concerns around recruiting participants, consent, and data collection, as well as liaising with sponsors and government bodies to keep everyone informed with the latest developments.

Within this team is a group who handles data collection and storage. Data is sent to us, entered into a secured database, and is then checked for errors, discrepancies, and missing information. This is the point where I come in, making sure that all of these little problems are resolved. This data can then be used by the statistics team to address the research hypothesis, and the more complete and accurate the data is, the better this analysis will be. My background in nutrition and understanding of statistics has certainly leant itself well to this role.

In between this data cleaning work are the usual meetings and goings on of any busy office, and I’m lucky enough to get an hour long lunchbreak in the midst of it all. By 5 pm the fatigue is starting to rise exponentially, so I log out, pack everything back into my desk, say goodnight to any colleagues still in the office, and head home. The pavements are equally a crowded but with no pressure to be somewhere for a particular time, this isn’t a problem.

I arrive home at approximately 5.30 pm, get a warm drink, and check social media, before going for a bath. After that I rest, often picking up a book to read until Jarred gets home at 9 pm. We get tea together, usually the defrosted half of something I made at the weekend, catch up on our favourite You Tube channels, and then go to bed. I don’t seem to have any trouble falling asleep, and morning quickly comes round again.

Take the Shot.

If there had been a vaccination for the strain of meningitis I contracted in 2011, chances are I would never have developed chronic fatigue syndrome. Luckily for you, I fell ill and then decided to whinge about it, calling it entertainment.

Vaccinations are a contentious topic in the court of public opinion all thanks to a scientist who wanted some extra pocket money. The scientific community are very familiar with publication bias; papers that show no correlation or have a null hypothesis are far less likely to be published. After all, medical journals are still a commercial enterprise and need to make money, and no one wants to buy a book where nothing happens. So the scientist forged some data to give the false conclusion that the MMR vaccine resulted in autism, and the world reacted with its usual level-headed reasoning abilities. Even if this were the case, measles, mumps, or rubella have deadly consequences, whereas autism is at least manageable with the right support despite its difficulty.

However, there is a debate surrounding vaccinations that is much closer to home for me, and that is the association between CFS and vaccinations. Vaccinations make people who already have CFS feel horrendous, which I can confirm from personal experience. I get a flu jab every year, and for the next 48 hours or so I will feel like Jupiter’s gravity is emanating from my chest and I also have an elephant sat on me. However, developing the actual flu would be significantly worse, leaving me incapacitated for several weeks at best, or at worst, dead. Therefore I consider the flu jab worth it.

The real question is whether CFS can be triggered following a vaccination. Having scoured the internet the vast majority of scientific evidence that I can access suggests that there is no correlation between the two, and given that CFS is often triggered by a severe viral infection, vaccinations may even offer some protection against CFS. However, there are also abundant case reports of people developing CFS out of the blue, and it has been noted that in these cases, a vaccination has usually been given a short time before.

Given that we know so little about CFS, it’s causes, and it’s biochemistry, there is no definitive way for researchers to establish a connection between vaccinations and CFS. For all we know there could be undiscovered associations with air pollution, food poisoning, or physical injuries. Vaccinations are constantly in the media and the forefront of our minds, making them the first conclusion that is all too easy to jump to. I remain extremely sceptical, however, as having studied the biochemistry of vaccinations as part of my degree, I simply cannot align inoculations and diseases like CFS.

It is also worth mentioning at this point that CFS, while a brutal disease that can even prove fatal, places far less immediate danger on the patient than meningitis, measles, mumps, rubella, poliomyelitis, and even influenza. Sometimes in life we have to balance the risks, and take the lesser of two evils. Take the shot.

Diary of a Disabled Person: 2 Years On!

In a couple of days this blog will have been a part of my life for two whole years. Two. Fricking. Years. For some reason I have been unable to fathom, people keep coming back for more, and who am I to deny my readers what they want? Except for being, you know, the author.

A year ago I did a recap of all that had happened in Diary of a Disabled Person’s initial year (https://diaryofadisabledperson.blog/2018/01/14/diary-of-a-disabled-person-one-year-on/), ending with a whopping 68,000 views, 80 followers, and 400 Facebook page followers. Now it’s time to reflect on what’s happened since then.

My total view count is nearing 80,000 views, which admittedly means that my blog has been viewed far less this year. This is partly due to my issues with Cracked.com and the fact that I haven’t published anything with them for a long time, but I fear changes to net neutrality may also have had something to do with this. However, while my view count is lower my WordPress following has shot up, reaching 200 just a few days ago. Similarly, the fan base I have accrued is incredibly loyal, never failing to show their support for me. This is reflected in particular in the 5 awards my blog has won in the past year.

I also took time to purchase a web domain and give my website a makeover, using a template to keep it professional-looking, while improving menus, accessibility, and friendliness for phone and tablet use. I created an audio page and went through the entire backlog of posts, making a recording of myself reading them aloud for those who prefer to listen rather than read.

A burst of inspiration also led me to start writing short stories which featured disabled protagonists in farcical scenarios, predominantly to entertain and make people laugh, but also to raise awareness of the issues disabled people can face on a day-to-day basis. These turned out to be incredibly popular, and over the course of the year I published 13 of them.

On social media my Facebook (@diaryofadisabledperson) page has seen some growth, and I set up an associated group as a place to share polls and news articles relevant to disability. I also set up an Instagram (@diaryofadisabledperson) account, which mostly consists of pictures from local wrestling shows and various selfies.

However, by far my biggest success on social media has been setting up a Twitter account (@WheelsofSteer). I am shamelessly explicit with my language, and frequently share anecdotes of both good and bad things happening to me that make people laugh and think. I’ve even taken to adapting famous song lyrics to make them about disability instead. Clearly my sarcastic comments resonate with the Twitter community as I am fast approaching 4,000 followers.

Looking forwards there is still plenty of room for Diary of a Disabled Person to grow. I am working on turning my blog into a book, a complex and time-consuming process but one that will be extremely rewarding. I can also confirm that a further 6 short stories have been written and these will be released soon. I am also thinking of starting some vlogging on the side, something which many of you have requested, as I have found some video editing software that would allow me to do this.

Let’s hope that I have as much positive news to share with you again in a year’s time, when I look back on the third year of Diary of a Disabled Person.

Image description: poster for series 3 of my short stories reading "Diary of a Disabled Person. Coming soon... Short Stories: Series 3. A Zombie Apocalypse, a pirate ship, a wrestling ring, & more..."

Happy Wife = Happy Life.

2018 was a great year for weddings; the royal family alone used tax-payers money to pay for two extravagant weddings, and several wrestlers used their own, hard-earned money to pay for theirs. The biggest wedding of the year however, didn’t happen until 27th December and was well worth the wait.

Jarred proposed to me at the most romantic time imaginable; the interval of a wrestling show (https://diaryofadisabledperson.blog/2017/06/08/special-edition-the-perfect-surprise/). I said yes (duh), and we began searching for venues.

At first, we looked at a local gastropub we had visited once or twice, but even after several emails we never heard back from them. The second venue we reached out to was the Royal Armouries, and they responded within 24 hours. We visited the venue, were shown the rooms for the ceremony and reception, and decided on the spot that it was what we wanted. We booked it for 27th December 2018, relaxed due the extensive period we had to organise everything.

Those 18 months seemed to fly past at record speed. We had to book a registrar from the council, buy all the clothes and accessories we would need (dresses, shoes, hair pieces, rings, matching jackets for the wedding party etc.), order a bouquet, choose a cake, choose our music, send out invites, choose a suitable menu, choose our preferred décor, and create a seating plan for the reception. Fortunately, the coordinators were experienced and provided a great service, making the ordeal a lot less stressful than it could have been.

The night before the wedding my bridesmaid and her partner, Wiki and Nathan, crashed on a double air-bed in the living room, which once inflated had to be crawled across to get from one side of the room to the other. Jarred spent the night in a hotel so that his best man could help him avoid a wedding-stential crisis in the morning. My friends cooked and we played video games before having a relatively early night.

In the morning we didn’t have to wait long for the stylist, my bridesmaids’ sister, to arrive. Wiki was the first to get the makeover treatment, and then it was my turn. My thick, frizzy curls are a stylist’s worst nightmare, and it took over an hour just to pin up my hair. We sent Nathan out to McDonalds for fries, which I ate as my makeup was applied, being told when I could and couldn’t start chewing again. Wiki’s sister than helped us into our dresses and shoes, and after several hours of preparation, we were finally ready. Nathan had taken all of ten minutes to get ready.

I plucked my bouquet from the vase and we made our way downstairs to wait for our taxi, which for the first time in my entire life, was early. We arrived at the armouries half an hour before the ceremony was due to begin, so I mingled with family, friends, and soon-to-be-family in the foyer before being led to the waiting area behind the ceremony hall. There I waited with Batman and Robin, who had honoured me with their presence, my dad, and my bridesmaid.

Image description: me & my bridesmaid sat with my two page boys, who were dressed as Batman & Robin.

A few minutes later the doors opened, and I made my way slowly down the aisle to Welcome to the Black Parade, because I’ve never really grown out of my emo phase. Jarred stood at the head of the aisle trying not to look nervous, next to my decorated walking frame so that I could sit down after the 15 m marathon I had just completed.

Image description: my royal blue rollator covered in silver & maroon ribbons.

The ceremony opened with a reading by Jarred’s brother, and then after no one had expressed their objections, it was time for the vows. Jarred’s teenage brother provided the rings, and as the ring was slipped onto my finger, I noticed that Jarred was trembling. I wasn’t sure if it was out of fear or excitement, and that is still the case.

Next, I made the same vows to Jarred, thankfully minus the “in sickness and in health” part which in my case seems a bit redundant. As I slipped the ring onto his finger, I had to bite my lip to stop myself from laughing, having just noticed the Darth Vader plaster he was sporting on his finger after cutting his hand on a broken wine glass a few days before.

With that the ceremony closed, and it was time to sign the marriage certificate. This turned into an opportunity for photographs with the bridesmaid and best man, the entire wedding party, and with our parents. It was at this point I realised that I technically have two mothers-in-law, as Jarred’s parents had divorced and his father remarried some time later. Fortunately, both mothers-in-law are nice.

The next hour was filled with the drinks reception, which included taking a few photographs by the large Christmas tree and also the war elephant in one of the museum’s many galleries, as well as mingling with our guests. This was my first meeting with many guests from Jarred’s family as they live so far away from us, and the time quickly passed as I got to know them.

We entered the reception room a little before 6 pm, and I got a good look at the little gothic cupcakes before undertaking my first ever livestream. The livestream was short and sweet, but I put my phone in my bag afterwards as a flood of notifications poured in.

Once I’d ended the livestream, we had the speeches, where my father recounted a rather embarrassing incident involving a hedgehog sanctuary, and asking a member of staff what to do with a dead hedgehog (I had found one the week before on the way to school). Compared to other anecdotes from my childhood this was fairly tame, so I don’t mind to much, even if I am now being spammed with hedgehog emojis from my friends.

The best man’s speech was just as good, noting a theme of violence in our choice of proposal and wedding venues, and stating the statistic that the person most likely to murder you was your wife/husband. Jarred’s speech also discussed wrestling having messaged the wrestling company at who’s show he had proposed, to which they had responded “Didn’t get an invite though, did we?”. They are still adamant that we should have wed in a wrestling ring, as we all know how famously smoothly those marriages go.

The meal followed the speeches, and having dined on carrot and ginger soup, roasted pepper risotto, and strawberry cheesecake I was almost too full to move. Unfortunately, I had to move for a little tradition we call the “first dance”, and we wobbled unsteadily around the floor to The Only Exception by Paramore.

Shortly after the first dance we handed out the cupcakes, and the DJ began to play an excellent set list of rock tracks, from classics like Bon Jovi and Guns ‘n’ Roses, to mid-00’s punk like My Chemical Romance and Green Day.

As the evening progressed, I mingled with guests, spending a great deal of time discussing wrestling with one of Jarred’s cousins in particular. Slowly guests began to drift off until eventually only me, Wiki, Nathan, and Jarred remained. Jarred called a taxi and by midnight we were home.

It took Jarred 40 minutes to unpin my hair, removing a seemingly endless supply of bobby pins and bobbles while I tried not to laugh. Make-up removal required several wads of cotton wool, particularly as the very impressive long-lasting lipstick lived up to its name. It was almost 1 am by the time I crashed into bed, falling asleep almost immediately. Other typical wedding night activities would simply have to wait.

Now we just have the rest of our lives to go…

New Year, Same Old Me.

In early January 2018 I started my first job. After 5 months of HR dragging their feet with the paperwork I was relieved to finally start work, even if my hours were limited. When I arrived my new employer had even more concern for exasperation with HR as my computer login didn’t work, and the fact that the IT department were inaccessible complicated matters. We asked about incorporating access but were told the cost was too great, which due to all the budget cuts is believable. I finally managed to get onto the computer only to find that one of the programs essential for my role hadn’t been set up properly, so once again IT had to come to the rescue. After this I spent the first few days going through my compulsory training, but there was no job-specific training, so I simply learned from following what my colleagues did. It seemed to work well. These were all just teething issues that settled down as time passed.

In mid-January Diary of a Disabled Person became 1 year old, and a week later I accepted my first ever award for my efforts, The Leibster award. I was gaining confidence in my work and felt ready to expand my horizons.

By mid-February I was developing my new website; I had paid for a web domain and used a template I liked to create what you now see before you, added better menu and search functions, added my social media, and added a donate button. I also decided, after much deliberation, to set up a Twitter account. I was a little reluctant to do so as I had heard so many things about online trolls and generally toxic behaviour towards each other, but I also knew that it would enable me to reach out to a wider audience. However, once I had set up a profile online I realised that my concerns were mostly unfounded, and I was introduced to many new people and opportunities. I began writing accessibility reviews and giving interviews for podcasts and magazines, and I quickly gained a substantial number of loyal followers.

Image description: a selfie taken on the sofa in our lounge, in front of the window. I'm wearing a black blazer & white shirt, with my hair neatly tied back in a bun.

Before I knew it Easter was fast approaching. I had been given more hours at work and was feeling more positive about the role. I also received a work phone, which was a relief as up until that point I had been using my personal phone as my work one, using up the minutes on my contract and meaning that I constantly had to fend off work calls on my days off. I had many understandably frustrated customers when I had to tell them I wasn’t at work that day so couldn’t help, as I didn’t have access to the necessary resources.

Knowing that my hours were increasing allowed me to pull what was, in retrospect, quite a mean April Fool’s prank. Having waxed lyrical about the extra strain put upon me by my increased hours I informed my readers that I would no longer have the energy to write, and that Diary of a Disabled Person was coming to an end. I let them believe this for 4 whole hours before breaking the news that this was a prank. I thought the prank wasn’t particularly convincing but clearly I’m a better liar than I had anticipated, and I still feel a little guilty about the whole scenario. I aimed to ease the upset a week later when I accepted my nomination for a second award, which thankfully seemed to go down well.

Shortly after Easter came the Leeds Digital Festival 2018, something which my office were heavily involved in. I had helped arrange several seminars and workshops all over the city, some of which I got to attend in person, and that was the precise moment when my wheelchair decided to break down. My wheelchair had to be taken to a workshop for testing and repairs, and I was informed that I was lucky to receive a replacement wheelchair for the month I spent without my own, a luxury that was apparently not awarded to most people who were left to levitate if they wanted to leave the house. I was more thankful for the fact that I didn’t have to pay for any of the repairs, which included a brand new set of batteries. I was particularly thankful as the landlord wanted the annual rent up front, on a tighter deadline than the year before, which we could afford but didn’t leave much in my account.

In June things began to deteriorate at work. I would come home in tears almost every night, usually frustrated that I appeared to be making an excessive number of mistakes. Eventually it got so bad they insisted they write instructions down for me, but fortunately it was this that highlighted I had been following instructions without making too many errors, and that the majority of the time the mistakes were in the instructions themselves. However, mutual trust and respect had been shaken enough to create a tensely uncomfortable environment.

It was also in June when I got my first tattoo, a simple piece of calligraphy down my right arm reading “Disability Doesn’t Mean I Can’t”. I was pleasantly surprised to find that the pain wasn’t unbearable, and I had no issues at all with the healing process thanks to some good advice from my boss. Given that they are the only accessible tattoo parlour nearby, even going so far as to bring a tattoo station downstairs for me, I was relieved to get good service; it means I can go back!

Image description: holding my arm up to camera, showing the tattoo down my forearm reading "disability doesn't mean I can't".

In July Jarred graduated from university; I watched from the front row next to my future brother-in-law, and we celebrated by eating together later in our favourite restaurant. Then Jarred, who had been looking for work since finishing his studies a few weeks before, managed to land a job as a care assistant. We both settled into the new routine quite quickly, and things seemed to be going well.

Right at the start of August life dealt me two of the hardest knocks I’ve ever taken a matter of days apart. Firstly, our beloved hamster Tribble managed to escape in the night and hasn’t been seen since. While a hamster may seem a trivial pet to grieve over I was distraught, having lost a loving companion, and I was still struggling not to suddenly burst into tears at random intervals when I lost my job.

They told me their funding had run out and were letting me go, but they were taking on new staff at the time so I’m not sure how much that influenced their decision. I think a disagreement with one of my colleagues, who had told IT that I would go over to see them despite the fact that I had already arranged for them to come to me, had more to do with it.

They tried to ease the blow of losing my job by saying I could transfer to other admin roles within the district, the only problem being that the only ones with regular or substantial hours were based in the inaccessible building. Tired and fed-up, I quit on the spot.

Once again I began job-hunting. The days were drawn-out and seemingly endless, weekends and weekdays merged into one, and I became increasingly depressed. Even accepting more awards taking me to a sum total of 5 did little to cheer me up.

There were a few issues surrounding inaccessible offices, but eventually I found that this time around I had much more luck obtaining interviews due to the work experience I had, so this wasn’t as much of a problem this time round. Less than a month after losing my job I was offered a new one, this time a salaried, full-time role in medical research which my knowledge and skills were much more suited to. I obtained references from my past employer, had my hen do at the local cat café, and bought my wedding dress.

On October 1st I started my new job, helping to chase-up erroneous or missing data, ensuring that anomalies were explained wherever possible, and producing a mistake-free dataset for the statisticians to work on. I was also involved in some trial management skills, booking meetings and promoting studies to boost recruitment, and fell in love with the varied role. The training was substantial which helped to boost my confidence in my ability to do the job. I was never bored and, because it is based at a university, there were absolutely no qualms about accessibility. My colleagues and superiors are lovely and even offered to guide me through the Access to Work scheme, although fortunately for them I had completed the scheme previously anyway.

The winter months grew colder and the wedding fast approached. I saw a few friends and family as the wedding approached, although most of the visits were fleeting as people were saving money for the actual wedding. Clothes were bought, cakes chosen, and invitations sent out. For obvious reasons I am actually writing this before the wedding takes place on 27th December, so I cannot tell you how it went. It is strange to think that I write this as Jarred’s fiancé, but will publish this as his wife. Still, I cannot wait to end 2018 and welcome in 2019 on such a high.

Happy new year…

Image description: Happy New Year written in white text in the top corner of a picture of some fireworks.