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.

AYME

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.

New Wheelchair

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.

The Marvel-Like Origin Story with Less Explosions: Part 2.

At the time, I didn’t take in the implications of what was happening. I simply swallowed the ibuprofen and drifted back into a semi-comatose state, broken only by the cold tip of a thermometer being pressed into my armpit. My temperature had decreased and I did not require hospitalisation. However, meningitis being an infection of the protective layers surrounding the brain, medical attention was advisable, but home visits from GPs were not available and I was unable to make the short journey to the surgery.

Without a doctor’s note my school did not believe that I had been as ill as I claimed, and I was forced to sit an exam just one week after contracting the illness, and pushed to return to lessons in under two weeks including sports and dance classes. After much arguing with the school I was eventually permitted to cut my workload down to the essentials, and dropped dance and sports altogether, but the damage had already been done.

After 6 months I still felt exhausted with minimal exertion, my muscles constantly ached, I was permanently nauseous, and my head felt like The Borrower’s had invaded my skull. I decided it was time to seek help and went to see a doctor. After reporting all my symptoms and undergoing a small physical examination, I agreed to have blood samples taken, which all came back negative. It was suspected that I had Chronic Fatigue Syndrome (CFS), previously known as Myalgic Encephalomyelitis (ME).

I was referred to the paediatric out-patients clinic at a local hospital to confirm this suggestion. Following a more thorough investigation, the diagnosis was confirmed, and I was prescribed pain killers and other medicines to treat my symptoms, and was referred to the physiotherapist.

The physiotherapist was a short, plump woman who was genuinely friendly and reassuring, and over the course of an hour she questioned me about my symptoms, their severity, and which regions of the body were most effected. She also assessed what exercises I was capable of performing, and decided to place me on a course called Graded Exercise Therapy. Every day I was required to do a set number of step-ups and star jumps, and to walk a particular distance, and each week the number of step-ups and star jumps, and the distance I had to walk was increased. It was designed to help me build up my energy and strength gradually, restoring me to the best state of health possible since the meningitis. Since there was, and still is, no cure for CFS, this was my best hope of recovery.

The Marvel Like Origin Story With Less Explosions: Part 1.

As a child I was healthy and active; the only illnesses to affect me were the usual bouts of colds, flu, chicken pox, and vomiting bugs that everyone invariably suffers. Living in Yorkshire meant that beautiful hikes were only a short drive away, with Mallham cove being a particular favourite of mine. I also partook in swimming, netball, and dance outside of standard sports classes in school, and frequently helped my parents with gardening and housework. By far my favourite activity was drumming, because letting the rhythm flow through what felt like my very soul was endlessly liberating. I played in two bands and the look of surprise on the audience members’ faces as the tiny girl took her place behind the drum-kit never failed to amuse me.

On Wednesday 5th January 2011 I came home from school tired, aching, and with a prominent headache, but thought nothing of it. Assuming I was coming down with a cold, I went to bed early, and drifted off to sleep completely unaware of how different my life would be when I woke up.

In the morning the headache had worsened, my temperature was rising, and my neck felt stiff and painful. When mum switched the light on to check on me, the dim light of the energy saving bulb felt as intense as a sun burning in front of my face. Mum checked my hands and feet, which were cold, and then placed her hand on my forehead, which was extremely warm. After this I remember very little until the phone rang several hours later; my mum had completed a symptom form on the NHS website, and within minutes of submitting the form, received a phone call from a concerned nurse. I was vaguely aware of my mum speaking on the phone before my bedroom door opened and the phone was pressed to my ear.

“Hello. Can you tell me your name please?” the nurse asked.

“Emma Steer,” I replied.

“And your date of birth?”

After I minute I managed to give the correct response.

“Do you have a headache?”

“Yes, a bad one, it really hurts.”

“Does your neck hurt?”

“Yes, I can’t move my head at all.”

“How is your temperature doing?”

“I’m hot and cold at the same time.”

“Any signs of a rash?”

“No.”

“Can you pass me back to your mum?”

I muttered something incoherent, and weakly pushed the phone towards mum. A short conversation ensued before she put the phone down.

“It’s viral meningitis,” mum told me, “and you need to take some ibuprofen to control your temperature. You shouldn’t get blood poisoning because it’s viral, but if your temperature continues to rise, they’re taking you to the Intensive Care Unit of Sheffield Children’s Hospital in the air ambulance.”

An Unlikely Crowd.

When I tell people that I enjoy watching wrestling their eyebrows travel so far up their faces that they merge with their hairline. What surprises people even more is that when I attend live shows, I am made to feel the most welcome I have ever felt in a crowd. Many assume that the staged violence draws in a crowd of mentally disturbed misogynists, but the reality is that women enjoy watching sweaty, muscular men run around in their underpants as much as the men appreciate the women.

The main appeal of attending a wrestling show, however, has no element of sexuality. The fact is that the shows are fun to watch, the crowd is a group of friends having a good time, and the wrestlers receive the respect and admiration they deserve for mastering their craft.

You may be wondering what wrestling has to do with being disabled, so I shall reiterate how welcoming an environment it is. I am not stared at, nor ignored, and no one uses condescending tones when they speak to me. My opinions are not immediately invalidated just because I am disabled, and it is rare that the first question people ask me is how I ended up using a wheelchair. I have spent many happy hours in the company of wrestling fans, chatting, laughing, and getting to know each other. Even the wrestlers themselves accept me; when they run around the ring high-fiving everyone there, they always lower their hand so that I am not missed out. Were I to go on a night out with any of these people, I would feel perfectly safe and far less vulnerable than I do in most bars and clubs.

wrestling

Recently, when the show was searching for a new venue, they made accessibility one of their concerns so that myself and other wheelchair users could continue attending the events. This level of dedication to equality is frequently neglected by large international companies, who leave ramps obstructed, automatic doors switched off, and allow disabled facilities to be misused, let alone smaller companies.

When you see someone dressed in all black, with plenty of leather, studs, piercings, tattoos, and eyeliner, wearing a wrestling-themed t-shirt, don’t be afraid of them. When someone tells you that they enjoy heavy metal and wrestling shows, even if they don’t look like that, don’t reject them. It is these people who have unquestioningly welcomed me into their midst, and they have warm hearts and unprejudiced minds. What’s more, they are not afraid to help someone in need, such as a young disabled woman in need of companionship.

The Poppy Man.

While there are many negative aspects to using a wheelchair, and it is undeniable that I am treated differently to an able-bodied individual, sometimes the response of able-bodied people towards me can be uplifting. Take, for example, the smaller front wheels of my wheelchair getting trapped in the gap between the carriage and platform on the London Underground. A stranger saw my difficulty and completely unprompted helped to lift my front wheels onto the platform, disappearing into the crowd before I had a chance to say thank you.

One such occasion occurred when I was 16 that I will never forget, on a cold, wet, inconspicuous November day about a week before Remembrance Sunday. I had been helping my dad with the shopping as he is colour-blind and finds selecting ripe fruit difficult, and we were heading towards the adapted till designed for those with disabilities. A woman had spotted the shorter queue at this particular till, and despite the fact that I was clearly heading towards it and have little choice about what till I use, pushed in front of me. I bit my lip as I could tell she was the type of arrogant and self-righteous person who will accept no reprimand, and patiently waited behind her in the queue while she unloaded her over-flowing trolley onto the conveyor belt.

What I had failed to notice was the man selling poppies in honour of Remembrance Day directly opposite the till, who had seen what had happened. When the woman in front of us eventually left, I went to the end of the till, and started to help my dad pack the bags. Upon seeing a movement out of the corner of my eye I turned my head to see the man standing next to me, holding a poppy; it wasn’t even one of the flimsy paper ones, but one from Pinterest knitted with black and red wool and a safety pin attached to the back.

“I’ve just seen how that woman treated you”, he told me by way of introduction, “and I’m giving you this because by holding your tongue, you kept the peace.” He then handed me the poppy without taking payment and wandered back to his stall, where people continued to ignore him.

My dad of course saw this and when we had finished packing the bags he walked over to the stall, thanked the man for his kindness and bought a poppy. We never knew his name and he forever became the poppy man.

I kept the woolen poppy pinned to my lanyard, which keeps all my keys conveniently in one place, as a reminder to myself when someone treated me as that woman had, that kindness and empathy still existed. I was devastated when one day I returned from a shopping trip to find that the poppy had fallen off my lanyard, and was nowhere to be found, but even without the memento the memory of the poppy man will never fade, and deserves no less than to be immortalised in words.

Introducing…

I was born and raised in Bradford, England, which contrary to popular opinion, is not a bad place to grow up. The city is full of history and culture, and looking down from the top of the valley towards the city centre is a surprisingly charming view. The intricate architecture at the  base of the valley complements the bleak rows of terraced houses sprawling up the hills, and the parks provide small patches of green at regular intervals.

As an only child, I often missed the company of other children my age, instead spending most of my time in the company of my parents, and the cat. I spent many hours winding up toy cars and releasing them from the back door, watching them rush along the hallway and into the lounge with Bramble, our cat, not far behind. When I wasn’t doing that, I was sat in my room immersed in a book with Bramble sat on my feet, or I was playing outside with Bramble sunbathing on the metre-squared patch of land we called a patio.

My primary school had previously been a middle school, and so had it’s own library, sports field, and science laboratory. It had a happy-go-lucky vibe, and despite being quite the misfit, I enjoyed my time there. My time at secondary school wasn’t quite so cheerful, and the bullying although not much worse than the name-calling and occasional beatings I received at primary school, somehow felt more damaging. I kept my head down and worked hard so that I could leave for university as soon as possible.

As I write this post, I’m in my final year of my degree, BSc Nutrition, and these past 2 and a half years have been some of the best of my life. The bullying stopped, and as I developed my skills as a scientist, I grew happier and more confident. I made friends with an I.T student who lived in the same halls of residence as me, and we spent countless hours playing pool and listening to rock music together during my first year. In my second year, I bumped into Jarred, a social misfit who enjoyed rock music, Marvel comic movies, and wrestling. Over the following 18 months a relationship would flourish that is mostly based on laughter, Star Wars, and My Chemical Romance albums, and strangely seems to work.

By this point I had become a self-confident 20 year old, whose wardrobe resembled a black hole, and who just so happened to use a wheelchair. This blog is the marker of the next stage of my life; actual adulthood, where I have to start acting responsibly and behaving like a civilised human being. I want to provide an insight into life with a disability, and the small and sometimes hilarious consequences of such a disability, because disability has been a taboo subject for too long. So, get ready to step into my shoes…actually that should be wheels…and prepare to witness both how normal and abnormal my life actually is.