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…

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 of 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 at 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 and 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 cholecystectomy (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…

Dalek Days.

Daleks first petrified Doctor Who fans in the early 1960’s and quickly took on pop culture status with their inhuman features and grating speech, mostly gaining notoriety for the simple tactic used to defeat them; climbing stairs. Of course when they gained the ability to levitate in the 1980’s, people watched horrified as the Doctor and his companion realised that they could no longer rely on their usual trick of running up the stairs. I remember watching the tense episode in 2005 when the Daleks once again demonstrated their gravity-defying abilities, and 9-year-old-me wondered just how many hair driers were needed to enable to Daleks to do this.

Dalek

Unfortunately it appears that some people cannot comprehend the fact that Doctor Who, including the Daleks, is entirely fictitious. I say this because it seems to me that I am often equated to Daleks as a wheelchair user or so the look of fear on people’s faces when the disabled person talks to them suggests, and they assume that wheelchair users also have the ability to levitate. Therefore they see no problem when a lift or ramp is obstructed, or when there is simply no lift or ramp available, and they wonder why I am frustrated or upset.

When I’m out and about,I often find cars parked over the area of the pavement sloped to the level of the road. While prams, bikes, and even a small manual wheelchair might be able to cope with a small drop of a few centimetres, a powered wheelchair is just too heavy to risk such a manoeuvre, not to mention the fact that it’s actually quite painful. If the driver is in the vehicle the usual response to my predicament is to be told that the car will only be there a minute, but of course when I round the corner and find another vehicle doing the same thing for the same reasons, it could end up taking half an hour to travel what is only a five minute amble. I deal with this by setting off ridiculously early for every appointment I have to make, so that if I face an obstruction I can find a route around it, but I still sometimes end up late.

I also have to be very careful when trying out new venues for the first time; I’ve been told to meet someone in a pub who knew I was in a wheelchair, only to find a 5 cm stone step in the doorway and no ramp available. The solution suggested to me was to drive up to it a bit faster, have someone push the wheelchair from behind, or to climb out the wheelchair and have someone carry it inside for me. Any of these could have damaged the wheelchair, which costs the price of a small, second-hand car, and I knew that my insurance policy would not cover any damage inflicted by these tactics. I chose to vote with my wheels, feet would be the wrong word, and went to other pubs that didn’t require you to complete a Paralympic event just to get a pint.

I understand perfectly why the pre-levitation era Daleks had a somewhat grumpy temperament, as I only wished to complete a degree and get a job, never mind world domination (that will come later). Now, having gained the ability to levitate, I have a little less sympathy for them. Admittedly dealing with ignorance on a daily basis is highly irritating, and I guess wouldn’t blame them for bearing a grudge.

It has been suggested to me that I should dress up as a Dalek for Halloween, but unfortunately while I have a creative imagination, my abilities to physically produce my creations are the equivalent of a drunk elephant squaring up to a mouse. I also don’t own a whisk or sink plunger, which is rather the set-back.  Instead I will have to rely on the simple phrase “I’m not a Dalek”, and spend my money in the places that have had the wherewithal to spend their money on providing wheelchair access to enable me to spend my money there.

The Clouds Behind the Silver Lining.

Given the health issues I have had throughout adolescence and early adulthood, it is no surprise that I suffer from chronic depression. Some argue that since depression is so commonly experienced among chronic fatigue syndrome (CFS) sufferers that it is a symptom of the condition, and in our cases not a disease in its own right. I find it difficult to fathom how this makes much difference as both conditions are treated by trying to control the symptoms, and not by targeting the cause of the diseases which are largely unknown.

Whatever the case may be, I find the depression one of the most difficult things to cope with surrounding my condition. If I am tired I go to bed for a bit, and if I am in pain I take some pain killers and have a warm shower. Even if these do not eradicate the symptoms completely, in most cases they will lessen them to a tolerable level. However, once the depression rears its ugly head there is very little I can do about it, and it quickly escalates until it becomes all-consuming and inescapable.

A lot of non-medical experts, and even a few supposed experts, have told me that if I exercised more I would be happy. If someone can be happy while experiencing exhaustion, intense muscle aches, joint pain, dizziness, nausea, and headaches for several days following such exercise they honestly deserve a medal.

One of my most severe periods of depression came during the summer of 2012; I was 16 and was supposed to be enjoying the long summer months before returning to education to start my A-levels. During that time the peers at school who could loosely be called friends barely made any contact with me despite having multiple opportunities to do so. My school were arguing about whether I would be allowed to use my wheelchair around school, and whether I could have someone to help me get around as I couldn’t push my own wheelchair, nor could I afford a powered one. The extensive periods of free time lead me to brood over the negative aspects of my life; I had been ill for 18 months at this point with no signs of improvement. I felt that my teenage years, the time all the adults told me was so precious and that I shouldn’t waste a second of, was being taken away from me.

It was a series of minor negative events experienced in close proximity to each other that pushed me too far, and I tried to commit suicide. When I had finally been deterred from doing so by my horrified mother, the mental health service refused to help, and unable to get to see a GP we were left alone, reminding me all too well of the meningitis.

After the suicide attempt I began to self-harm, and it quickly became an addictive and obsessive behaviour. The mental health support systems available in my area on the NHS were appalling, making their services as inaccessible as possible, both physically and mentally. When I finally managed to see a mental health worker the treatment I received was awful, and I came out of the supposed therapy more depressed than when I went in. Fortunately a local charity provided a counselling service of a much higher standard, which was friendlier and more accessible. By the end of the therapy I received from them, and alongside the introduction of anti-depressants that worked well alongside my other medication, I reduced and finally stopped self-harming altogether.

Although I have had brief relapses into self-harming, none of these periods have been as serious, nor lasted as long as before. I still bear marks on my wrists and legs, and after much deliberation I have chosen not to cover them up with tattoos. I fully understand why people might choose to do this and hold nothing against it, but I do not understand why I should be made to feel any less of a person due to the symptom of an illness, in the same way as I don’t hide the walking sticks I use inside of my flat.

I still suffer from depression, and after a recent bout of very serious ill health I have had to increase the dose of my anti-depressants as a temporary measure, until I am at a more suitable time and place to address the issue. However I do not feel as if it controls my life as much as it did, and so far I have not attempted suicide again, and at least my self-harming tendencies have significantly reduced.

The Real Mermaid.

I have been extremely fortunate in one aspect of my illness; I am still able to swim, albeit with a sloppy breast stroke interspersed with doggy paddling when my arms get tired. This is yet another of my activities that causes people to raise their eyebrows when they see the wheelchair gliding over the tiles next to the pool, but most people refrain from comment.

Once in the water the buoyancy lessens the pain in my limbs, and I am able to perform slow lengths up and down the pool, with a couple of minutes break between each 25 metre stretch. Admittedly others using the pool can become frustrated if they get stuck behind me, but I try my best to keep to one side, and give others the space to move around me. It is also in the pool that I have had some of the most positive responses to my disability besides my writing, as people are amazed at someone at least attempting to live as normal a life as possible.

There is one particular experience from a swimming session that makes me smile every time I think of it, and is something that others love to hear about.

One of my swimming costumes actually came from the children’s clothes section and is bright blue, with pictures of a coral reef and a rich ecosystem of tropical fish covering the fabric. On this particular occasion I was wearing some starfish-shaped earrings that I am rather fond of, and the combination of the indoor lighting and water made my hair appear slightly red.

There was a small boy with his mother who had been watching me swim slowly up and down the pool for some time, and I made sure I smiled at him as I waded past to climb out of the pool. I hauled up my body, which honestly felt like a block of lead without the support of the water, and swung myself into my wheelchair, something I had done countless times before. The young boy had watched me do this and turned to speak to his mother.

“Mummy, mummy, look, a real mermaid!”

I have never seen anyone look so embarrassed or so hopeful that the ground would open up and swallow them whole as the boy’s mother did at that moment. I didn’t realise that it was possible for all the colour to drain from someone’s face, only for them to blush a brilliant red so quickly afterwards. Before she had a chance to apologise I smiled at her and then started to laugh, which prompted everyone in that section of the pool other than the boy to start laughing, including the mother. I bent over to speak to the boy, and said;

“I’m afraid I’m not a real mermaid, but I’d like to be one.”

I moved away from the pool still chuckling and when I got home 20 minutes later I noticed that I was continuing to smile so long after the event.

The imagination of a child is an amazing thing; the fact that the boy had taken pieces of information that seemingly contradicted each other, such as my ability to swim but not to walk, and string this into what is actually quite a logical conclusion when you really think about it, astounds me to this day.

Starfish.jpg

Special Edition: The Perfect Surprise.

In one of my early posts I talked about a wrestling company whose shows I frequently attended, and how welcoming and accepting the wrestling fans are (https://diaryofadisabledperson.wordpress.com/2017/02/26/an-unlikely-crowd/). These shows have become a staple of the relationship I have with Jarred and mean a lot to us. We attended one such show on Sunday 4th June 2017 and that evening turned out to be an extremely special one…

It was cloudy but dry when Jarred and myself reached the venue of the wrestling show, and we wandered indoors to the area reserved for wheelchair users. As the crowd gathered around the ring, the music was playing so loudly that I could feel my wheelchair vibrating, but the chatter of the crowd was not drowned out, growing increasingly louder with anticipation as the show approached. Then the music stopped and the commentators introduced the show, before the wrestlers for the first match came striding out to their respective theme songs.

After four matches the interval was announced, which mainly served as an excuse to revisit the bar. I wasn’t drinking that night as I’d had a stomach bug and was still feeling a little rough, and Jarred hadn’t finished his drink so didn’t need to go to the bar. Instead, he came and stood on my right side, took my hand, and removed the ring I received as a gift for my 18th birthday from my godmother. The ring had been selected by my godfather but he passed away when I was 12, giving the ring additional sentimental value that no sum of money could replace.

Once the ring had been slipped off my finger, he got down on one knee and asked me to marry him. In the middle of the crowd the proposal was somehow beautifully private, and few people appeared to notice. I nodded before replying “yes” over the music, too stunned to say much more at the time. Jarred then slipped the ring onto my left hand as my engagement ring, kissed me gently on the cheek and we prepared to watch the second half of the show.

At the end of the show we left quite quickly by our usual standards, and meandered home along the pavements. As soon as the door to my flat had closed behind us I rang one of my closest friends. Towards the end of secondary school we had made a semi-serious promise to act as bridesmaids at each other’s weddings. She was the first to hear about the engagement, and was more than happy to fulfil her side of the promise.

The next day was a flurry of phone calls and Facebook posts letting our friends and families know what had happened. The outpouring of well-wishes on social media was almost as overwhelming as the proposal itself, and I knew that this was a moment worth documenting. Although this doesn’t particularly relate to disability, Diary of a Disabled Person seemed the perfect place to write about the perfect surprise.

Engagement