Donations.

Due to some technical issues the donations tab that I set up a few weeks ago has not been working. The issue is now resolved (and has been tested by my wonderful fiance).

To donate, click the donate button in the top, right hand corner of the screen (or click the menu button, and then bottom button is donate on phones and tablets), and select your preferred method of payment.

Donations are not obligatory, but any support is very much appreciated.

Pride Without Prejudice.

The first weekend in August marks Pride in Leeds, when the LGBTQ+ community come together with the rest of population to celebrate their differences, mostly by sinking back huge quantities of alcohol. This being my first pride since coming out as bisexual I was incredibly excited to be attending the various events occurring in the city centre throughout the weekend. So excited, in fact, that I decided to turn my wheelchair into Donald Trump’s worst nightmare.

Pride chair

On the Saturday the sun was out, and a gentle breeze helped to prevent my skin from burning and peeling off like I was some kind of mutant reptile in the roasting 20°C heat. Jarred and myself made our way to the viaduct, a region of Leeds so closely associated with gay culture that a man in a police uniform walking down the street is not necessarily a policeman. A street party had been set up; there was music playing and an impressively sophisticated outdoor bar set up on one side of the street. There was also a small stage and people were being invited up onto the stage to sing and dance together. It was, perhaps, the only time I’ve ever been glad to see something inaccessible.

We meandered up and down the street, listening to music and investigating the few stalls there were. After a little while the music stopped rather abruptly, and a drag queen whose make-up was far in advance of anything I could do took to the stage, introducing a performance by the Show Girls, a group of drag performers from one of the local venues. During the introduction various members of the audience were subjected to light-hearted criticisms, such as querying whether a woman’s afro was fake or real, or whether one man naturally had silky smooth legs. Being on the front row, I was pretty easy to spot.

“And oh, look, Davros has delighted us with their company!”

Jarred and myself both burst into uproarious laughter, setting off the rest of the crowd who had seemed a little nervous as to how to react. What no one seemed to realise is that it was actually quite refreshing for someone else to make a joke about my wheelchair, which quickly becomes the elephant in the room when people do everything they can to ignore its presence for political correctness, highlighting in the process that the wheelchair is all they see. The drag queen was teasing everyone, not just myself, and there was nothing to take offence to.

The Pride parade took place on the Sunday, starting in Millenium square in the centre of Leeds with a free-entry concert. The council had made sure to provide an elevated wheelchair platform meaning that I could see the stage above the rest of the crowd, although because I couldn’t see through the crowd, another audience member had to direct me to said platform. I lost count of how many other wheelchair users I saw at the event, and not once did I have to deal with things thrust in my face or people stepping directly over my feet. Nobody stared at me, and nobody ignored me either.

Towards the end of the concert I was invited to ride on one of the council’s accessible buses in the parade, representing both the LGBTQ+ and disabled community. I jumped at the opportunity, figuratively, not literally of course. Once I was on the bus my wheelchair was secured safely to the floor of the bus by a driver who clearly had many years of experience doing this. I got the flag I had attached to my wheelchair to wave, and waved it while meandering slowly through the crowded streets until my arm felt like Attila the Hun was trying to remove it. I was extremely surprised to find that I got a huge response from the crowd, who cheered loudly and waved vigorously back at me.

The best reaction of all the crowd members came from another wheelchair user who I had shared the wheelchair platform with earlier in the day. When she saw me waving from the bus her face practically split in half as she grinned from ear-to-ear, and I knew then that I had truly made a difference to someone’s day.

I was as welcome in that crowd as I am at my beloved wrestling shows, and I hope that I never forget what it was like to find pride without prejudice.

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 grueling 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 can 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 and 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 just 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.

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.

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