Illness – Page 2 – Diary of a Disabled Person.

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.

I Think, Therefore I Am Intelligent.

I’m blonde. I’m from Yorkshire. I’m disabled. By any stereotype I should be so lacking in intelligence as to effectually be brain-dead. However, considering that I have a degree I would hope that the opposite is the case; if not, I have wasted far too much money to bear thinking about. Despite the evidence that I am, in fact, an intelligent life form, many people see that I am sat down on some wheels and assume that this somehow drains the knowledge from my brain. I don’t know how or why this assumption has come to be, but it has, and it’s as annoying as a mosquito with a vuvuzela up its backside.

Recently, I ended up in hospital with severe pains around my rib cage and abdomen, which turned out to be gall stones rattling around inside of me like some kind of fleshy maraca. I needed emergency surgery as the case was acute, but when I met with the surgeons before my operation, my mind was not on the procedure. I wasn’t even sat in my wheelchair and they were talking to me like I was two, and as someone studying nutrition, I am perfectly aware of the implications and treatment for gall stones. I took great delight in halting their explanation of what the surgery entailed for my entrails, and described it to them using the full medical term. They looked moderately surprised but to their credit took it within their stride and laughed; it was only then that I realised I probably shouldn’t mock someone about to perform surgery on me.

The surgery was performed successfully, or so they thought, until the pains returned a few days after having the operation. Several scans later they found one last little blighter wedged in the bile duct, and an endoscopy was performed to remove it. My stay in hospital was longer this time, allowing me to develop a system for getting doctors to treat me as an equal; I read “intelligent” books including “On the Origin of the Species” by Charles Darwin and “The Double Helix” by Dr J. Watson, and also kept a puzzle book by the side of the uncomfortable bed. The change in the doctor’s attitudes towards me was remarkable, but as soon as I got back into my wheelchair the original treatment resumed. Had I had the energy at the time I would have taken great delight in sitting in my wheelchair all day while reading one of those books just to confuse them.

I should mention that it isn’t just doctors who treat me like this, but this is something I face most days from total strangers. For example when I was wearing my baggy university hoodie one day, the woman behind me in a queue at the coffee shop asked me if it were my boyfriends’. I remarked that for all she knew I could have been a lesbian and not to make such shallow assumptions about people. The man behind her in the queue found my comment particularly amusing, which embarrassed the woman even further.

Whenever I encounter such treatment, after I have dealt with the situation I often wonder if Professor Stephen Hawking ever has to deal with this. If anyone could disprove the association between disability and stupidity then it’s him, yet I still face this issue regularly and I know that the situation is similar for other disabled people. It’s utter madness.

Sex and the Sitting.

By the title alone most of you will have guessed that this entry discusses a sensitive topic, although I will not be addressing specific and explicit details at any point. This is simply another entry discussing the taboos that surround disability, which includes the doubly taboo topic of disabled people having sex. I hope that I have dealt with this topic sensitively, and do not offend any readers.

It often surprises my friends when I tell them that I am frequently asked about my sex life because of my disability, often by relative strangers, and completely unprompted. People are intrigued to know whether sex is even possible, what position I have to be in, and whether I can satisfy my partner, and it appears that people believe they are being inclusive by asking these questions. However, if the able-bodied are entitled to privacy surrounding his or her sex life, then surely this applies to the disabled too.

Society’s obsession with sex is undeniable; a small escapade into music videos or women’s magazines will prove this. Being able to discuss sex is no bad thing under appropriate circumstances and is part of free speech, but the problem arises when people misunderstand what is meant by appropriate circumstances. Discussing sex in a sex education class, or after watching films like “Fifty Shades of Grey” which revolve around sexual activity and consent, or after reading this blog entry, is appropriate. Asking someone unprompted about sex when meeting for coffee, after you’ve just met them at a party, or on a shopping spree is not appropriate. Asking someone unprompted about sex purely because they differ from you is completely inappropriate, and yet people often look proud of themselves while asking for being so modern and unprejudiced.

However, despite all this, I understand why people want to know about this aspect of my life. It is not unwarranted to worry about having a future relationship with a disabled person and how to broach the subject of sex with them. So, for the record, sex is relatively uninhibited in my case although there are a few limitations, in particular around the frequency of sex. The fact that sex happens repeatedly should speak for itself on the satisfaction front.

It is worthy of note that sex differs for everyone, and this remains true for those with disabilities. While sex for some like myself differs little from the norm, some will only be capable of particular positions, or may not be able to have sex as frequently as a healthy individual. Therefore trying to evaluate the sex lives of the disabled by asking individuals is futile, as well as inappropriate. On the other hand, accepting that people with disabilities can and do have sex lives would help society to progress in recognising disabled people as equal to able-bodied individuals, and the modern and unprejudiced demeanour desired by so many would be achieved.

The Marvel-like Origin Story with Less Explosions – Part 3.

Initially, the Graded Exercise Therapy worked well, but as time progressed it became apparent that something had gone awry. I was being pressured to increase the exercise level too quickly, and the star jumps began to cause intense jarring pains along my spine. My muscles began to ache more than they had before the therapy and my fatigue increased seemingly exponentially. Upon returning to the physiotherapist, I was advised to stop the exercises, and was also informed that I would probably need to start using a wheelchair when I left the house. Even after stopping the exercises, the pain, fatigue, and dizziness continued to worsen, until the state in which I currently live today was reached, and I could no longer walk outside. Being too weak to push my own wheelchair, and unable to afford a powered one, I had to rely on my parents every time I left the house and had no independence.

It took three months of arguing with my school before I was permitted to use my wheelchair in there, making me more and more ill during this time. I was also denied an assistant to push my wheelchair around school and relied on the support of my peers, including those who had previously bullied me, to help me obtain an education. Fortunately after another few months, the school realised their mistake, and when I started my A-levels I was given the support I needed.

I saved up for over a year, and eventually managed to by a second-hand powered wheelchair for over £1,000. It was in this wheelchair that I completed my A-levels, and I gained the necessary independence I needed to attend university. Unfortunately, this wheelchair had air-filled tires, and with the inevitability of death and taxes, I eventually suffered a puncture. My poor wheelchair was unusable and too expensive to repair, so I ended up with a new one, this time a brand new one with solid tires.

Image description: I'm sat in my powered wheelchair in a coffee shop. I have my skull and crossbones blanket on my knee, and my red top & dark blue pinafore are visible beneath my chunky knit cardigan.

Even after so many years of medics poking and prodding me, and modifying my medication to treat my symptoms, only one thing serves to alleviate the pain temporarily; hydrotherapy. I regularly visit the local swimming pool, where I perform gentle stretches and exercises, and even swim a little. The water removes the pressure from my joints, and for a few hours after exiting in the pool, I am reminded of what life felt like prior to the meningitis. For the remainder of my time I am disabled and pain-stricken, and while this is inevitably disheartening, there is still an element of hope in my life.

Medical research continues to improve the understanding and treatment of CFS, and without using a wheelchair, I would never have met my two best friends. One is disabled herself which naturally brought us together, and the other got run over (by accident) when he tried to get between me and pizza. Similarly, I would not have met Jarred, my beloved partner-in-crime, who I only met after choosing to remain in university accommodation due to its high standard of accessibility. It is even plausible that I would not have attended university, as the meningitis made me realise how precious life is, motivating me to make the most of it by getting an education. Of course, this blog would not exist were it not for a virus finding my brain tasty.

Disability is not the life sentence I thought it would be, and has enriched and improved my time more than I could ever have imagined, so that I live a full and happy life on wheels.