Mission Impossible 5: Time for a Holiday.

Everyone needs to take a break every now and then, and I’m sure it comes as no surprise when I say that even going on holiday is problematic for those of us with a disability. If it does come as a surprise, you might want to crawl out from underneath that rock you’ve been living under.

The first hypothetical hurdle comes when choosing where to go. Holiday parks like Disneyland are probably a relatively safe bet when it comes to accessibility, but not everyone enjoys eating pure glucose while being harassed by princesses and having to dodge around marriage proposals on every corner. City breaks provide a solution to most of these problems if you can cope with the heavy levels of traffic as everyone not lucky enough to be on holiday travels to work. These also rely on venues being accessible, something which is not always guaranteed. For those who aren’t especially fond of other human beings there are many beautiful historical and geographical marvels around the UK, particularly around North Yorkshire and the Lake District, but mountains and castle ruins aren’t the most wheelchair-friendly terrain.

The next thing to consider is accommodation. I was never one for camping as the idea of sleeping on lumpy grass while rain batters the tent mere inches from my face, and having to check food for insects before eating it does not appeal to me. While there probably is a wheelchair friendly tent hidden in the annals of the internet, I imagine it would cost a pretty penny, so camping is immediately ruled out. Youth hostels are often affordable and have accessible rooms, provided you can cope with sharing a space with delinquent adolescents. Independent hotels are never guaranteed to have accessible facilities, so the easiest route is to hope that a chain hotel in the area has an accessible room free for when you want it.

Most difficult of all is the consideration of transport. There are countless instances of air services losing wheelchairs, literally leaving the wheelchair user stranded in a different country while the staff try to figure out what all the fuss is about. Trains are also horrendous. Booking assistance to get on the train is like disability roulette as many a time it simply doesn’t materialise. Wheelchair spaces are often two narrow to accommodate a wheelchair, as are the bathrooms, and on occasions trains insist that wheelchairs are stored in luggage carriages (at an extra cost) at which point they get lost. Coaches can only accommodate manual wheelchairs that fold up and fit in the luggage component, although the drivers are usually trained in how to handle disabled passengers so are significantly better than trains and planes. Travelling any distance in buses or taxis soon accumulates great cost, and it is common for a disabled taxi to turn up very late, or the wheelchair space on a bus to already be in use.

All in all, the stress of organising everything and dealing with the inevitable accessibility issues often makes going on holiday feel like hard work. I know many people who choose to have a “staycation” instead, where they stay at home and only visit places in the local area for relaxation. Non-disabled people might find this concept ridiculous, but when going back to work feels like the holiday you were supposed to have, what’s the point in going at all?

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.

What Came Before.

Given that the title of this blog is Diary of a Disabled Person you could be easily forgiven for thinking that discussing my life prior to disability is somewhat irrelevant. However having had many conversations with able-bodied people who accidentally discriminated against the disabled and pleaded ignorance, I have been able to reflect on my own actions before disability was a factor in my life.

The saying that “you never imagine that something like this could happen to you before it does happen” is clichéd, but it is also true. Before a virus decided my brain tissue looked like a tasty meal, disability was something other people had to deal with. Of course had you asked me, I would have thought myself to be highly inclusive and non-discriminatory, a result of my ignorance. I realise that in my time at school I have probably obstructed a corridor, left someone disabled to struggle with a door, and stepped across the front of a wheelchair without a second thought. I probably spoke to someone in a patronising tone or ignored them altogether in favour of speaking to whoever they were with. I certainly never stopped to consider that I could enter buildings that wheelchair users couldn’t, by virtue of the fact that I could climb up steps. Had I been old enough to drive chances are I would have parked over a lowered kerb. My parents brought me up not to misuse disabled facilities like toilets and changing rooms, but other than that, I probably caused many disabled people a headache or two.

All of these little annoyances that now occur in my daily life I have probably put someone else through and while I hate to make excuses, I would say that most were a result of ignorance. No one in the family was disabled at the time, none of my friends were disabled, and I wasn’t disabled; I had no experience to learn from. This is why I try to have a little patience with others when they simply didn’t know or realise that what they were doing would cause me extra trouble, particularly if they are genuinely apologetic and help me resolve the issue when it is brought to their attention. I will
sometimes try to reassure them that I used to do similar things out of ignorance myself.

There are however, a group of “ignorant” people that I find difficult to deal with. There are those who take exception to me having a problem with blocked access routes, and neither apologise nor help me resolve the issue, often giving me a mouthful of abuse for daring to burst their precious little bubble in the process. Many car drivers will move forwards to clear a kerb drop only to roll back over it once I have passed, leaving it blocked for any other wheelchair users. Others tell me they’ll only be there a minute and to be patient, despite the fact that this attitude can make me late to wherever I am headed.
Then, there are the worst of them all; the people who park in disabled bays, and use their changing rooms and toilets who don’t need to, usually because they want to take their pram/trolley/shopping bags into a larger room with them, and not when all the other facilities were already in use. These people are invariably the rudest and most inconsiderate, and certainly cannot plead ignorance when there are signs everywhere highlighting that disabled people should have priority access to those facilities. I knew better than that as a child, and I know I would never have been that inconsiderate
as an able-bodied adult.
I believe genuine ignorance to be a forgivable reason for accidental ableism. However when people choose to carry on impeding the disabled by continuing to do things they know are ableist, neither apologising nor helping me to rectify the issue or simply disobeying the signs displayed clearly around the facility, I cannot accept ignorance as an excuse. It is these people who are truly ableist and shouldn’t get to hide behind half-hearted excuses to avoid responsibility.

Galled.

That very night at approximately 4 am, the pains started up again. The area just below my diaphragm gave the sensation of intense cramping, and the pain spread upwards around the entire rib cage and shoulders. I was denied the pain relief that I had been prescribed the week before and offered one that I was allergic too, which was stated clearly on my medical notes. The pain continued to build up and the nurses on the ward repeatedly rang the doctors in charge of my case, trying to get one of them to come and see me. However, despite the fact that you could hear my screams half way down the corridor, I was deemed to be attention-seeking and unimportant.

At 7 am I rung Jarred. I don’t think I even said a word, just screamed, but he knew what was wrong and dropped everything to rush over to the hospital. When he arrived one of the nurses was sat with me, holding my hand. Jarred said he had never seen anyone look so worried and upset before in his life; the nurses believed me and my supposed attention-seeking antics. Jarred sat by the bed and held my hand while the nurses continued to fight my corner against the doctors. At 9 am the pains began to fade, and by 10 am they had virtually gone. I apologised to those on the same ward as me for waking them up, but not one of them held it against me.

It was evening before the registrar showed up again, clearly unconcerned about that morning’s episode, his response being that “it had gone now, anyway”. He then informed that I had a 3 mm gall stone wedged in the lower region of my common bile duct blocking pancreatic secretions, and that I would be having an endoscopy to get a closer look at it the next day. I had never been so angry with anyone before; had the surgeons checked for further gall stones after removing my gall bladder, which takes only a simple test, this would have been spotted and I wouldn’t have gone through all the pains afterwards.

To numb the back of your throat prior an endoscopy, inhibiting the gag reflex, a numbing solution is sprayed into your mouth which tastes like rotting bananas. After some sedation the camera was passed down my throat and through my stomach into the top part of the intestine, while I lay on my front on the table. The screens above me showed pictures of the gall stone well and truly wedged at the end of the pancreatic duct. After a few attempts to dislodge it the doctors decided that they would need to open the duct to pull the stone out. They sedated me to the point of unconsciousness and removed the stone, finding that the stone was in fact 5 mm wide.

A few days after the endoscopy I was released from hospital, although this time I was less confident that the pains would not return. Thankfully, the passing months proved me wrong, and I was finally discharged from the surgical outpatients clinic the following July. While I find the first surgery somewhat comedic and can laugh at the awkward experience, I still find it difficult to smile when I remember its aftermath.

Utterly Galling.

5 days after returning home from hospital the pains returned, but this time they were much more intense and lasted longer. I ended up in accident and emergency, and within five minutes of arriving I was being treated because of my breathing difficulties. 10 ml of intravenous morphine later I was feeling a lot better; it’s difficult to tell whether this was because of the pain relief or the fact that I was as high as a kite. It was difficult for Jarred to tell too, because apparently my speech was an incomprehensible slurring murmur.

I was transferred back to the care of the surgeons who had removed my gall bladder, who this time were far less welcoming and seemed to consider me a waste of time. However, having had more than enough pain and vomiting for one year crammed into a matter of days I refused to go home without some form of medical help, and Jarred thankfully backed me up on this because it gave him a few days where he could leave the toilet seat up without being nagged.

First of all I had a chest x-ray. Being a somewhat busty woman, this was actually quite difficult, because when I was told to press my chest against the flat surface of the x-ray machine, my stomach couldn’t touch the surface, and perhaps this is why the x-ray showed nothing.

Next, they tried a CT scan, which is like being passed through the hole in the centre of a large polo mint. I was quite happy to watch the cameras spinning around me; it was strangely hypnotic. They took one scan without any dye injected, and then another with the dye which would highlight my blood vessels to spot any problems occurring in the cardiovascular system. The only thing wrong with this dye is, because of its ability to produce a sensation of warmth in the thighs, it quite honestly felt like I had wet myself. Apparently this sensation is perfectly normal, I was assured by the radiographer, and I was relieved to find that I hadn’t wet myself at all.

The CT scan showed nothing so then I had to have an MRI scan. Of all the tests I had had this was the one that made me feel deeply uncomfortable. My face was less than a foot away from the white roof of the tunnel, and I imagine that for anyone with full-blown claustrophobia it is a daunting experience. I managed to keep calm, although I couldn’t help being annoyed that the grey stripe painted along the roof of the tunnel was off-centre and wonky.

The night after having the MRI scan a registrar came to visit me while my parents and Jarred were there. He told us that he had seen nothing on the scan, despite him not having the special training on interpreting MRI scan results, and when I pointed out where the pains were the most intense, he told me that it wasn’t the liver that was hurting. This was despite the fact that the liver spans the abdomen just below the diaphragm, which was exactly where I was pointing. My mum, who is a nutritionist herself, looked like she wanted to rugby tackle the registrar to the ground, and both my dad and Jarred who have no medical background at all knew where the liver was. The registrar tried to discharge me but I refused until the pains had been dealt with properly. Little did I realise at the time that my stubbornness would prove to be such a wise decision…

Mr Right for the Wrong Reasons.

Being disabled doesn’t just impact the one with the disability but also those around them. Family, friends, and colleagues have to adapt quickly to accommodate someone’s needs, which can be a daunting and problematic task at the best of times. As a young adult no one has felt the effects more than my other half, Jarred.

I was already disabled when I met Jarred at a bands and beer night hosted by the university. Barely anyone showed up to the event, which started late, and as we were among the first to arrive we got talking. Then I kept bumping into him when eating my evening meal at the refectory, where he appeared every night at 5 pm without fail, which apparently was no coincidence. Over the next few months we got to know each other, usually spending a couple of hours together a day and sometimes heading out to pubs and bars in an evening. Three months into this routine he asked me out and the rest is, as they say, history.

Well over a year later, Jarred confided in me that one of the most irritating things about dating someone who was disabled was the way he was treated because of it. When we are out together people will treat him as if he were God, giving him looks of admiration for daring to defy society by putting up with the disabled girl and making her happy. Truth be told I’m a natural blonde who’s naturally busty, likes rock music, Star Wars, comic book movies, and wrestling, and apparently I have a good personality too. Jarred becomes extremely frustrated that no one seems to understand that he’s not dating me because he feels sorry for me, or because he wants to be politically correct. He’s dating me because he likes me, and the wheelchair doesn’t even come into it.

Not only is this an insult to Jarred, this is insulting to me. It suggests that due to my backside being parked in a wheelchair I can’t have a personality or intelligence, and my boobs instantly become unattractive. It suggests that the only reason someone would ever want to spend time with me is to become credible to others and raise their charitable profile. It suggests that taking me on dates is only done out of political-correctness and sympathy.

Jarred is my “Mr Right” and I have never been so sure of anything in my life. He’s “Mr Right” for the right reasons; he cares about me, he makes me laugh (usually at his expense), he looks out for me, he respects me, he treats me equally and as an intelligent individual, and he has done all of these things from the day we met. We have fun together, and enjoy each other’s company. He’s not “Mr Right” for the wrong reasons, but neither of us seem to be able to escape the concept. Discrimination is not always directed at me, or even intended, but it still exists in the sympathetic and hero-worshiping stares of strangers including those around me right now, as we sit together writing in a coffee shop.Dry Dock.JPG