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.

Finding a job – what happened next? – My Family Our Needs

Here’s a little mid-week treat for you all; what’s it like to be disabled in employment?

This ties in perfectly with next week’s blog post, which will have more of a focus on what my day-to-day working life is like.

The Flawesome Award.

A few days ago I was kindly nominated by The Invisible Vision Project for the Flawesome Award, an award created by Sophia Ismaa, to be awarded to bloggers by bloggers who have overcome their personal flaws, and used them for good in their writing. I was incredibly flattered by the nomination, not least because this now makes me a 6-time award-winning blogger after only 2 years of Diary of a Disabled Person.

In order to accept the reward, you are required to acknowledge the award’s creator, Sophia Ismaa, and also the blog who nominated you, in my case the Invisible Vision Project. You must then list three flaws and demonstrate how you turned them into strengths, before nominating another 10 bloggers for the award.

It took many hours of intense thinking to come up with three personal flaws, as they are so few and far between. Nevertheless, I persisted for the sake of my art, and managed to come up with the following:

I’m reluctant to compromise.

There is an old idiom that says “You can tell a Yorkshireman, but you can’t tell him much”. Now I’m no man but I’m very Yorkshire, and while I tend to dislike stereotypes, this is one which cannot be denied. As my parents and now my husband will tell you; I’m really fricking stubborn.

This little quirk has caused much trouble in the past, predominantly when trying to forge friendships with peers and colleagues, and also when it comes to knowing when to relent and be grateful for what I had already achieved.

However, there are also plenty of occasions when compromise isn’t an option. Accessibility is one such example. There is no halfway-house with accessibility; either something is accessible or it is not. This extends beyond simply having ramps, lifts, toilets, & hearing loops etc., but actually having them available for use, not blocked, not impeded, and not hidden behind a staircase that someone else must climb to get the assistance you need. Something as simple as blocking an access route or forgetting to put out the ramp is all that is needed to render something inaccessible. I’ve tried being nice with the people who do this, but my protests fall on deaf ears. It’s only when I put my wheels down and refuse to compromise that I am listened to, and I know that this is the same for many other disabled people.

I don’t take things as seriously as I should.

If something goes wrong my instinct is to laugh about it. This is fine when, say, a pigeon flies into the window and you spill your drink, but not so much when something goes really wrong. It frustrates those around me no end when I simply don’t recognise certain situations are wholly inappropriate for a joke. It can make topics such as moving house or changing jobs an absolute nightmare for anyone working with me, as instead of getting the paperwork done, I’m sat in the corner mocking the situation.

Fortunately, I have been able to put my ability to laugh at anything and everything to good use. I have only coped with my long-term health issues because I have been able to laugh at them, including when I needed emergency surgery to remove my gall bladder (although laughing really did hurt then). Similarly, I have used it to educate others about life with disability, and to normalise and humanise disability to make it easier for others to cope with. There’s nothing like making a corny pun about the wheelchair to set a stranger at ease, meaning they can focus on the conversation we’re having, instead of panicking about what they should say to me.

I don’t like to let my feelings show in public.

The general public’s reaction to seeing a wheelchair user out and about is to ignore me so hard that I know they’ve noticed me, and that they’re simply pretending I don’t exist to avoid an awkward interaction. Sometimes people will physically push past you while still pretending they hadn’t noticed me, despite the fact that deciding to push past is a decision made based upon the fact that they’ve seen me. On other occasions I get comments from strangers, most commonly about how fast “it” goes, and whether I’ve got a licence to drive it. From time to time, I simply get blank stares.

Perhaps though, if I showed my displeasure at such occurrences, the public would take note. Perhaps they’d realise that their words and actions are upsetting, and try to make changes to their behaviour around disabled people. Perhaps they would take notice of all that disabled people report on social media, and to the news.

This characteristic, though, serves to protect me. If I stopped to challenge everyone who made my life more difficult than it already is, I would never get anywhere or do anything. I would also be exposing myself to torrents of verbal abuse, and even on occasions threats of physical violence. Keeping a stony face, helped out by headphones that can block out the comments, has allowed me to go about my daily business and live my life.

***

Once again, I’d like to thank The Invisible Vision Project for their kind nomination, and without further ado, here are my nominations:

Seeing ME In Reality.

The Disability Diaries.

Wheelescapades.

The Life Quadraplegic.

A Backpack, A Chair, and A Beard.

My Fitness Journey with Fibro.

KimiBlack.

Thinking Out Loud.

Being Aunt Debbie.

Cane Adventures.

My congratulations to you all.

Nomination: The Flawesome Award.

I’m incredibly proud to announce that Diary of a Disabled Person has been nominated for a sixth award; the Flawesome Award!

I hope to accept the award on Sunday, provided I have time to write the acceptance post by then.

Until then, many thanks to The Invisible Vision Project for their kind nomination.

Image description: Award Number 6: The Flawesome Award! With many thanks to the Invisible Vision Project for their kind nomination written in blue text in a white box, with a blue shimmering border.

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.