Medal of Honour.

Most people upon first meeting me fall into one of two categories; either I am to be ignored as a blemish upon society’s “flawless” beauty, or I am treated as if the life of a disabled person is so gruelling that even existing is something of an achievement. I am not brave because I woke up this morning. I am not brave because I got dressed. I am not brave because I ate breakfast. In fact, I am not brave at all. Anyone who has seen my reaction to any kind of insect or arachnid other than a ladybird or butterfly will confirm this.

One unfortunate truth of living with a currently incurable illness is not knowing if you will ever get better, or if you will live the rest of your life experiencing symptoms. Given that Chronic Fatigue Synrdome (CFS) is thankfully not particularly life-threatening, or certainly only so in rare and very severe cases, my future in terms of health is a big, blank canvas. I do not know when I will get well, if I recover at all, and I do not know how much life I will have left after recovering, if I have any at all. That would be a daunting prospect to anyone, and I would be lying if I said that I did not feel fear of such a future. Frequently I am told that this sort of thinking is pessimistic, but it is not. I’m a realist, and this is a rather ugly aspect of reality.

Those who have seen me at my very worst, barely able to move in bed and having no interest in food or drink whatsoever, would not say I was brave. They have seen me cry, and they have seen me shake with fear when I realise that this could be my life for a long time. They have seen me withdraw into myself shortly before a medic pokes and prods me, and then says that I’m a mere attention-seeker. Everyone else sees me on my better days, when I’m cheerful and upbeat because I’m not in as much pain or as fatigued. They have not seen me cry or shake, and when these people tell me that I’m brave, they have not seen a representative view of every aspect of my life.

No one in their right mind makes the choice to experience chronic, debilitating illnesses. I did not make the choice to face this illness, so why should I be deemed brave for trying to live with a circumstance I can do nothing about? Bravery, for me, is when someone makes the choice to face their fears, or to put themselves in harm’s way to protect others. I have done neither, and so will adamantly deny any bravery on my part.

My wheelchair is not a medal of honour. Neither should it be a setback, or invisibility cloak. It is a wheelchair, and it’s only function is to carry me from place to place because I cannot carry myself.

Pimp my Ride 2: The Outfit.

If you’ll pardon the expression, there is another way to stand out as a wheelchair user besides decorating the wheelchair itself, and that is the way in which I decorate myself. I have always loved clothes, and it is rare that I am able to resist the tempting call of a sale rail or charity shop bargain. You don’t need to be rich to be stylish.

Showing personality can be as simple as wearing a graphic t-shirt, like a band or film t-shirt, immediately showing the world a little bit about yourself and your preferences without having to say a word. It gives people a way of talking to me that doesn’t immediately concern the wheeled contraption beneath my behind, and that can make social situations a great deal less awkward. When I went to see an amateur production of the stage musical American Idiot, no one had to ask why I would want to see the production simply because my beloved Green Day t-shirt spoke for me.

American Idiot.jpg

Of course, I would hardly be able to go to a job in such an outfit, but formal attire doesn’t have to be dull either. One of my favourite items of clothing is a red skirt with black dots all over it, which I have affectionately christened the “ladybird skirt”. It’s bright and cheerful, and when I wear it I frequently receive complements about my sense of style. Paired with a linen blouse covered in large, black swirls, I look as ready as ever for any work situation, even if the blouse did come from a charity sale.

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Colour coordination is another simple trick I use to draw attention away from the wheelchair. Pairing black jeans with roses on the hips with a plain black top, studded belt, and red scarf is simple, but effective. With Jarred following me around like a lost puppy, I knew that was an outfit that I had thought out well.

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Even evening wear does not have to lack personality as a wheelchair user, although admittedly long, flowing gowns would only become entangled around the wheels and motors on my chair. The little black dress is a timeless classic, and is suitable for most occasions too. Paired with a little colour in the tights, I manage to give the dress a slight twist.

Bond Girl

I also own a leopard print dress, and another black dress, this time with silver sequins on the skirt. Both of these always seem to make people smile when I wear them, and I am told that they suit me well.

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None of these outfits have ever left me out of pocket, but flamboyance leaves people easily fooled. Before I begin to sound as if this was merely an excuse to show off the few photographs of me in existence that don’t look weird or dorky, I will say that the way I dress does actually have a purpose. It informs people that I am more than a girl in a wheelchair. It tells people that I am a human, with likes and dislikes, and that I can make choices for myself. I find that a little character goes a long way as a social outsider, and anything that helps others to feel less awkward towards disability can only be a good thing as we move towards equality.

Special Announcement!

Recently, I’ve been working on building up my professional writing portfolio, and this includes doing some freelance work for Cracked.com. My debut article for the international magazine has just been published, and can be accessed here:

http://www.cracked.com/blog/5-ways-my-disability-actually-improved-my-life/

I aim to continue working with Cracked.com, who have been extremely supportive, and are the magazine to give me my first big break.

This week’s proper blog post is down below; so don’t forget to check that out too! Welcome to anyone who has found this blog via Cracked.com!

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 apologise 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, which inhibits the gag reflex, a numbing solution is sprayed into your mouth, which tasted 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 past few months have proved me wrong, and I was finally discharged from the surgical outpatients clinic a few days ago. 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, despite the fact that the liver spans the abdomen just below the diaphragm, which was 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.

A Galling Experience.

As a 20 year old woman with a healthy body weight and balanced diet, even the radiographer was surprised when, during an ultrasound scan at the local hospital, my gall bladder took on the appearance of the asteroid field scene in Star Wars Episode 5: The Empire Strikes Back. I had been suffering periods intense pain just below my diaphragm for about a week, making it difficult to breathe, and blood tests revealed that one of my liver enzymes was almost ten times the concentration it should have been. Anyone with medical knowledge will now be shouting at the screen “gall stones”, and they are not incorrect. My gall bladder was crammed full of the blighters, and was so inflamed, that they were worried it would burst.

Gall bladder

24 hours after the ultrasound scan, which I suppose I ought to be grateful found gall stones and not a baby, I was being prepared for emergency surgery. The surgeon visited me on the ward shortly before my operation, and she perched on the bed to explain what was wrong with me, and what the procedure was. As a nutritionist, with a lecturer who specialised in liver disease which encompasses gall bladder disease, I was well aware that the gall bladder “was a bag of bile that helped digest lipids”, and what exactly was entailed in an emergency laparoscopic cholestectomy (emergency key-hole gall bladder removal), and took great delight in informing the surgeon as much. Fortunately, she saw the funny side of this, as I only realised after I had said this that it probably wasn’t sensible to annoy someone who would shortly be digging around inside my abdomen while I was unconscious.

I was wheeled down to theatre on a rickety trolley, and was surprised at how calm I was feeling considering that this was the first time I had ever had surgery. In the preparation room, the surgeon asked me how I was feeling, and in response I did perhaps the most British thing anyone has ever done, and said;

“I’m good,” while giving a thumbs up.

I woke up just under two hours later very dazed and confused, particularly because the cannula had moved from my right elbow to my left hand. I was also rather disconcerted to find that I was still in theatre; thankfully the operation had been completed, and they were simply injecting the last lot of morphine prior to transferring me to the recovery room, but it scared me nonetheless. The morphine must have knocked me out again, because I woke up about an hour after this in recovery, and after a few minutes a porter came to return me to the ward.

A few hours after coming out of surgery, I realised that I needed to pee. There was, however, one small issue. Trying to get to a toilet while attached to a drip and oxygen tube, with a drain hanging out of my right side, and still feeling woozy from the anaesthetic, is like trying to ride a bicycle backwards up Mount Everest in a blizzard. I resorted to the use of a commode, which was made far more awkward by the presence of my parents who sat outside the cubicle. Perhaps most embarrassingly of all, I had to get Jarred, who was also visiting me, to pull my kickers down for me, as I was so tangled and confused that it was simply impossible on my own. Fortunately, the effects of the anaesthetic seemed to wear off overnight while I slept, and by the morning I was feeling significantly better.

I was discharged later that afternoon, with some strong pain killers and anti-sickness tablets to help me cope with the after-effects of someone repeatedly prodding me with metal sticks. I was only sad that I wasn’t allowed to keep my gall stones, which I still hold would have made a very interesting artefact to display on my shelf of interesting things. However, my galling experience was far from over…