Illness – Page 2 – Diary of a Disabled Person.

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-worshipping stares of strangers including those around me right now, as we sit together writing in a coffee shop.

Image Description: my husband & I when we were students, sat in a local bar at Christmas time. The room is fairly dark but you can see a Christmas tree in the background. We're facing the camera with our arms around each others shoulders. — OLYMPUS DIGITAL CAMERA

Disabled Benefits That Aren’t Money.

Despite all the hassle that comes with using a wheelchair there are a few small perks in the midst of my hectic life. Most of these are small and perhaps insignificant, but they are still positive things that wouldn’t happen if I didn’t use a wheelchair. Since I am often subject to other’s pity, it seems reasonable that I should introduce some of these concepts to the glorious source of useless information and time-wasting that is the internet.

I have discussed how I am regularly treated as if I were stupid and am spoken to in patronising and condescending tones. While this is endlessly annoying, it does have the silver lining supposedly displayed by all clouds outside of Yorkshire; I am able to get away with what is deemed by others to be immature or childish behaviour. I can openly laugh at toilet humour in public, chase pigeons along the muddy pavements, do doughnuts in my wheelchair in the park, and best of all, I can go and see children’s movies at the cinema without judgement. The best examples of this were going to see “Minions” and “The Secret Life of Pets” at 19 and 20 years old respectively, and despite my age none of the cinema staff so much as batted an eye lid. My dad, who was at least as excited as I was if not more so, was presumed to be a poor carer subjected to such childish amusements simply to please me, so also evaded judgement.

Other benefits arise from the physicality of using a wheelchair; shoes are never worn out by treading the unforgiving streets of Leeds and Bradford, and since mine now last me for many years, I no longer feel guilty if perhaps those shoes come with a larger price tag.

Similarly, one embarrassing situation that plagues my able-bodied counterparts derives from gravity, and that is my inability to trip over. Spider-man will never be able to impress me by catching me and my lunch at the same time, so he’ll just have to use webbing to spell out anti-ableism messages along the bridges crossing the ring road. According to rom-com legend I’d never have met the perfect man either. However, besides these trivial matters the inability to fall is highly useful, and never more so than when leaving Wetherspoon’s on a Saturday night.

Another useful perk is the ability to skip my place in a queue and get away with it without making anyone angry, which is of considerable surprise to anyone living in the UK. I am usually taken to the front of queues for the use of disabled facilities such as toilets or changing rooms, and shops such as Primark allow disabled people to pay first at an adapted till only opened when disabled people are paying. During Fresher’s Week, when I went to collect my student card and related paperwork, I was allowed to skip a queue that contained hundreds of frustrated freshers. It is rare that anyone gives me the burning side-eye, tut, and miniscule shake of the head reserved especially for queue-jumpers in England. In all fairness, the queue-jumping rule is usually based on the fact that some disabled people may need rapid access to a bathroom due to their condition, or that their immunity could be impaired and so sitting in the midst of a crowd presents a true danger. However, for the rest of us, it’s nothing short of amusing to be able to get away with something reserved for the closest circle of hell according to most Brits.

As someone who uses a wheelchair but can also stand up, I have particular fun in shops. The looks of horror, dis-belief, and bewilderment I receive as I leap out of my wheelchair and yell “It’s a miracle!” at the top of my voice never fails to amuse me, although perhaps this prank is a little cruel.

It is not necessary to look upon anyone with a disability with sympathy, and empathy or compassion are far more welcome. Our lives are different to the able-bodied, but that does not make us inhuman or superhuman, especially as being able-bodied doesn’t eliminate you from experiencing the ups and downs of day-to-day life. The ups and downs do differ between the two groups, but the pattern remains the same; life and all it’s glorious drama does not discriminate.

A Small Corner of the Internet.

Shortly after I was diagnosed with chronic fatigue syndrome (CFS), sometimes known as myalgic encephalomyelitis (ME), I visited the NHS website to try and find out more about the condition and what it entailed for me in terms of symptoms and treatments. On one page several charities and support groups for people with CFS were listed, among them the Association of Young People with ME (AYME). I admit that I am sometimes wary of support groups, as sitting in a small and exclusive group bemoaning our trials is not going to integrate that group with the rest of society. However, when I followed the link to their website I found lots of information available about campaigns, events, and medical research surrounding the condition, and the general feel of the charity was a somewhat optimistic one, without being unrealistic. I decided to sign up to the charity, and within the week I was a member of AYME.

AYME provided a free bimonthly magazine called Cheers for it’s members, but it’s main attraction was the chatroom provided for members under the age of 26 years old. A similar chatroom was available for those over the age of 26 years, and another for carers of CFS sufferers, with only a small subscription fee for each.

The chatrooms provided a place to talk to other CFS sufferers about their experiences of the condition, advising each other on medical issues, and sharing ideas about how to keep up with education or work while being so ill. While the main theme of the chatroom was the common factor that we all shared, it was not the sole subject discussed. The most refreshing aspect of the chatroom was that not all the discussions concerned CFS; some were little word games like anagrams and riddles, others addressed pop culture, TV, music, films, books, and arts and crafts.

I had been a member of AYME for five and a half years and had made a great many friends, when I heard the news. AYME was to be closed down and merged with another charity called Action for ME, where the chatroom was split into under 18’s who still had free access, and over 18’s who had to pay. Action for ME is a wonderful charity, and the merge was sensible in terms of logistics and finances, but without prior warning that the idea of such a course events was even in discussion, this news caught all the AYME members off guard. Many of the over 18’s like myself dropped the charity membership, and even those that stayed were upset at being cut off from our under 18 friends.

A prominent member of the chatroom set up a Facebook group, enabling us all to keep in contact, although it could not be structured or run in the same way as the AYME chatroom. Mere weeks after setting this up, she was asked to take it down as it was not moderated like the AYME chatroom, and those in charge felt that it left younger AYME members vulnerable, despite the fact that I am unaware of any instances of inappropriate language or behaviour occurring on the Facebook group.

The members of AYME were not going to let such a set-back destroy the tight-knit community established on the chatrooms and set up another Facebook group, this time being extremely careful to distance itself from AYME. So far no one has been asked to remove the group, and the same community can continue relatively unperturbed.

AYME was a wonderful charity while it lasted, and provided emotional relief and support for many thousands of people, as well as educating others about the disease and campaigning for disabled rights. Through it I have made many friends who I still keep in contact with; I have laughed and I have cried with them, and I relied on their support for a long time. I kept every single letter and card that I received through them and am mightily glad to have done so, as this truly reflects the profoundly great effect AYME has had upon my life.