Tag: Illness

I Am Not a Drug Addict.

Despite the world’s insistence on kale enemas being the cure-all for everything from colds to cancer, some illnesses require carefully manufactured pharmaceuticals for a cure, & even then sometimes there is no cure & we can only treat the symptoms. There is a plethora of such illnesses, & as of writing I live with at least 3 of them; asthma, depression, & chronic fatigue syndrome/myalgic encephalomyelitis. Depending on the outcome of my impending surgery, I could be adding another to the list – endometriosis (note: I now live with 4, because having just 3 was boring).

All of these illnesses are chronic. For the most part their causes are unknown, making it impossible to cure them. Instead, all we can do is treat the symptoms for as long as they persist, & the word chronic should give you an indication that the symptoms last longer than a couple of weeks. Yet, as fellow sufferers of such conditions will all tell you, we are constantly being reminded by our doctors that the pain killers & symptom managers we rely upon to function are only meant to be used for 6 months, or at most a year.

You don’t need to be a doctor to know that chronic illnesses don’t have the good manners to abruptly stop without warning after 6 months of using a prescribed medicine. However, at this point we start to be pressured by medical professionals to stop using medicines, without alternatives being offered. We are faced with a choice; subject ourselves to debilitating symptoms, or insist on keeping our prescription & be labelled as dependent on drugs. As far as most doctors are concerned, this is no different to being a drug addict, living from one high to the next, consumed by the need to remain intoxicated. Very few of them seem to fathom that our dependency stems from the desire not to be in excruciating pain.

My prescriptions keep me alive; they mean I can breathe. On top of that, they dull the pain enough to allow me to move. They meant I got an education, a full-time job, a husband. They mean I can write blog posts & make videos, join protests & watch wrestling, socialise & play games. Even with them I remain in constant pain.

Back in early 2019, shortly before we were scheduled to leave the EU for the first time, my main prescription disappeared. No one would supply it. I argued with the doctors & pharmacy daily, watching the number of pills left dwindle day by day for an entire month. Eventually, just before I ran out, the supply returned, but for an entire month I had lived in constant fear. If they ran out, how would I work? If I couldn’t work, how would I pay the rent? If I couldn’t pay the rent, where would we live? Even scarier than the financial aspect was the knowledge that I would be in unbearable pain.

In the current unstable political climate of the UK, & who knows what madness will have taken place by the time this post is published, that fear has returned as the supply of my medicine falls into question. It made me realise just how dependent on these prescriptions I had become.

Dependent though I may be, addict I am not. Addiction is an entirely separate physiological & psychological dependency on drugs, often obtained illegally or for recreation in the first place, which still needs to be treated with far more compassion & understanding than it is given now. The stigmas & stereotypes that haunt addiction also haunt me, & that is what I despise. Chronic illnesses & drug addictions are two separate conditions, in need of different treatment options. To lump us all into one category & regard us all as lazy strays draining “the system” of money damages us all.

When all of this is said & done, there is one fact left to face. If we’re being honest, the pressure to get chronic illness patients to stop using prescriptions is to save money for the NHS, not for our own good as they like to tell us. What good is not being addicted to drugs if we’re in unrelenting misery instead, which ironically is something that drives people to use illicit drugs. While the NHS certainly does need more funding, jeopardising the health of patients goes against everything it was set up to do.

So, when you see scare-mongering on the news about people becoming dependent on prescriptions, just remember that there is an entire side of the debate supressed into silence. We are not drug addicts. We are just sick.

An Unconventional Medicine.

The difficulty in knowing how to deal with poor mental health is the fact that everyone’s case is very individual; everyone has different triggers, responses, and coping mechanisms. For me, my strongest coping mechanism is to write.

Writing about an upsetting situation helps me think about it logically and clearly. Converting emotions into words forces me to think through what happened stage by stage and piece together which bits are the most problematic. Watching the words appear on the screen in front of me helps me rationalise my reactions, allowing me to adopt the perspective of the reader reflecting on the choices of a character in a book. I don’t necessarily publish what I write in response to a tricky scenario either, although sometimes a passage will grow and develop into something I’m comfortable with others reading.

I picked up on this technique when I was having frequent accessibility issues at a building I used on a daily basis while at university, which despite my feedback and advice continued to occur, becoming increasingly frustrating as the months passed. Often I would come out of the building trying to hide the fact that my cheeks were flushed and I was shaking with anger, so nonchalant and disinterested was the response of the members of staff. I took to keeping a record of accessibility issues, when and where they occurred, and if possible who was responsible for an issue. About once a week I would submit this alongside an email reiterating my frustration to a more senior member of staff, but when that didn’t have an effect I took it to the highest level of management. The problem lingered but lessened significantly, and on my more recent visits I haven’t had any difficulties at all.

What I noticed was that keeping a record and writing an email about the incidents greatly helped calm me down, and while still annoyed and aware of the problem, I wasn’t fixated or brooding about it constantly. I decided I’d try this technique with other problematic scenarios, and was surprised to find out just how effective it was. The many issues I had faced at school concerning a lack of both physical and emotional support formed two blog posts, and my Twitter followers are bombarded with photographs of blocked access routes as I come across them. I found that while my memories of these cases are far from positive, I didn’t revisit these memories as regularly as I once did, and overall I simply felt happier. It worked.

If you want to try writing as a coping mechanism for difficult situations, it’s important to remember that no one ever has to see it. Computer files can erased, and paper can be shredded. It doesn’t need to be coherent, grammatically correct, or full or delicate vocabulary. It won’t work for everyone but it did for me, and it helped me put together something I feel truly proud of. Writing is my therapy.

TEDx: Disability in Education & Employment.

Disability presents a lot of challenges in day-to-day life. Something as simple as shopping can become Mission Impossible, so what happens when it comes to the more complicated stuff like school & work?

In the past 5 years I have finished high school, graduated from university, & had 2 jobs. There were problems I faced purely in relation to the disability in each of these situations, with the transitions between them being equally difficult. While I’ll be discussing my personal experiences of education & employment with a disability, I have been told that many others have encountered similar situations.

 

My high school was a gritty reboot of Waterloo Road. It was underfunded, overcrowded, & we had our own policeman assigned to the school. The standard of education was actually excellent, but pretty much everything else was falling apart at the seams just weeks after opening.

From the day I first fell ill at age 14 I encountered problems. The attendance team hounded me like I was a criminal, I was pushed back into P.E & dance far too hard far too soon, & I was initially denied the right to use my wheelchair at school. Once I had the right to use my wheelchair I was denied access to the support I needed, namely someone to push the wheelchair which I couldn’t physically do myself. It took up until I started my A-levels for me to get the help I required, and even then assistants would frequently fail to turn up, leaving me stranded.

While in the final year of my A-levels we were applying for university. At the time “UCAS points” were all the rage; if your grades fell a little below the requirements for the course of your choice, many universities would accept these points & allow you to enroll. UCAS points could be obtained by doing things like the Duke of Edinburgh badges, & raising money to go abroad over the summer to do charity work in developing countries. If you didn’t take up UCAS point opportunities you wouldn’t be penalized by the school so much as shunned, your efforts deemed unworthy, even if you couldn’t obtain UCAS points because not one scheme was willing to adapt for a wheelchair user.

I went the traditional route & focused on my education, except here I was penalized for not constantly retaking exams to get marginally higher marks. I had decided to put all of my efforts into studying for fewer exams, as studying for too many while chronically ill would have been disastrous. I got the grades I needed to go to university, which I hadn’t been when doing the constant re-sits demanded of me, but even when going to collect my final exam results I was reprimanded for being “too lazy” to take re-sits & get even higher marks.

It’s safe to say I was relieved to leave school & head to the University of Leeds School of Food Science & Nutrition.

 

University went much smoother than school. By this point I had been able to save up just enough money for a second-hand powered wheelchair so had gained independence. I was not penalized for taking fewer extra-curricular activities & focusing on my degree instead, and was supported by my lecturers & tutors. I had accessibility issues just like anywhere else, but these I could cope with.

There was the option to take a year out of my degree to study abroad or go on a work placement. I couldn’t afford international study even if I’d wanted to, but I did invest a great amount of time looking at potential work places. Many placements were based in factories & professional kitchens; not the most wheelchair friendly of spaces. Placements in dietetics were impossible to find as they all required you to have tailed a dietitian previously, something which is almost completely prohibited for patient safety. Many placements wanted extensive work experience in their candidates, but working on top of studying was simply not feasible for someone with a chronic illness. The remaining placements were all unpaid, & I simply couldn’t afford to live somewhere unpaid for an entire year. Yet another opportunity was closed off to me.

I went straight through my degree, during the final year of which I applied for graduate jobs, often facing the same problems as those for placements. I went to careers fairs. I went to the career’s advisor hubs & job-hunters based at the university. I booked one-to-one sessions with an advisor. Not once in any of these meetings could someone provide me with information about the accessibility of the jobs on offer, or even where I could find this information aside from blatantly asking with each application. Despite the many laws & policies meant to prevent prejudice, many potential employers seemed to suddenly lose interest upon discovering that I used a wheelchair, failing to reply to further messages, or simply terminating my application on the grounds that they couldn’t get me in the building.

I looked into progressing into dietetics as a post-graduate, but was bluntly informed that I wouldn’t pass the health checks needed to take the course. I couldn’t figure out how on earth using a wheelchair inhibited my ability to help people with their diets, of course assuming that the NHS would be the most accessible employer out there. After all, if you can wheel a bed through a hospital, you can get a wheelchair through, right?

 

My first job was in the NHS. The pay was barely above minimum wage, the hours were so pitiful that my annual earnings actually were below minimum wage, and it amounted to little more than pen-pushing, but it was a start. I proudly went to collect my ID badge from the HR department, rolled up the ramp & through the automatic door, & straight into a set of stairs. I looked around; there was no lift or other accessible entrance, & HR was 2 floors up. So I called them. At first, they simply refused to come down, but once a delivery driver had noticed my plight & marched up the stairs on my behalf, they were more obliging.

I started my job & almost immediately found that my credentials didn’t work when logging into my laptop. I called IT & they told me to come to them. I explained that given that they were 3 floors up without a lift, I couldn’t. After days of arguing they finally came out to us. This would happen every time I encountered an issue with my work laptop, but eventually the arguing lasted minutes instead of days. That was until one of my superiors decided I was making a fuss about nothing, told IT not to “pander” to me, & booked me an accessible taxi out to them before I’d even arrived in the office. It took the entire working day for me to get there & back as IT refused to come down to me, & upon my return I couldn’t even get into the office as my colleagues had blocked the door. I quit a week later; and that’s not even mentioning the fact that they failed to tell me about the Access to Work scheme, & once I had gone through the process they refused to follow the advice provided anyway.

 

I didn’t apply for any other NHS jobs, knowing I’d only encounter the same issues wherever I was. Instead, I predominantly applied for jobs at a place I knew was accommodating; the university. Less than 2 months later I was being trained for my new position at the Clinical Trials & Research Unit in the medical school. I didn’t go through Access to Work again, but the in-house occupational therapist recommended a specialist mouse, keyboard, keyboard-tray, desk, & chair to help me work, all of which I received soon after starting. I had issues with lift access & instead of being reprimanded, I was granted access to another lift that only a few of us, mainly disabled staff & students, could use. Office cubicles were even rearranged so that I could have a wall socket to charge my wheelchair.

 

Many accessibility issues relate to attitude over the facilities provided. This is true of educators, employers, health care providers, customer service workers, & people on the street. If you think this is untrue, just remember the current political attitude:

If a disabled person is not in education or employment, they’re a lazy scrounger living off the system, but if they do happen to work or be in education, they’re faking their disability.

Braveheart on Wheels.

There are lots of assumptions made about disabled people. It’s assumed that we are stupid, have no desire for independence, are lazy, ungrateful, uncooperative, and only our mothers could ever love us due to our needs. It’s assumed we’re not educated, employed, or even able to break the law (disclaimer: I am not a criminal, I’m making a point, please don’t call the FBI). There is, however, one assumption that to me seems the most problematic, and is responsible for a lot of the disagreements between able-bodied and disabled people: our mobility aids are seen as a prison.

Less than a year after contracting viral meningitis I was told by a physiotherapist, who at the time was advising my parents to buy me a wheelchair, not to become overly dependent on said wheelchair. It instilled within me a fear of my wheelchair and I used it as little as possible, unable to admit to myself when I really needed to rest. I almost seemed to be in denial that I was ill in the first place. That, among other factors such as being denied the right to drop some classes including gym and dance, and the very same physiotherapist pushing me through Graded Exercise Therapy far too quickly, led to the deterioration of my health. I spiralled out of control until I was begrudgingly using the wheelchair every time I left the house.

At this point I faced a difficult choice, neither of which could be defined as right or wrong. I could “give in” to my illness and embrace the use of a wheelchair, or I could shut myself indoors in the hope that I would get well again. Essentially I had to sacrifice either my health or my education. Spoiler alert: I let my health take the fall.

My wheelchair was never a prison. It enabled me to finish school, go to university, get a job I hated, get a job I loved, have a social life, and GET FRICKING MARRIED. I go shopping, I go for meals out, I go for drinks, I go to the cinema, and I’ve even been clubbing once or twice as a student (not really my scene). My wheelchair isn’t a prison, it’s my freedom (and now the title of this post makes sense).

I strongly believe that if more people understood this they would stop feeling sorry for me, and therefore they would be able to see that I’m a (relatively) normal person trying to do this “adulting” thing. The notion that “surrendering” to the use of a mobility aid is a bad thing is a terrible notion. Yes, being in a wheelchair has its flaws (see the entire rest of this blog for evidence), but I don’t for one second regret getting into the habit of using it simply because my quality of life has actually improved. I’m not confined to a wheelchair, I’m liberated by it.

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.