Boredom Looms.

It’s a commonly held mis-belief that scientists are not creative individuals, but given that we create new techniques and products on a daily basis, I would beg to differ. As a scientist myself I turned to creativity when I fell ill, as suddenly the large chunk of my free time spent being active became an empty void of boredom and brooding. Fortunately over the past few years, crafts as relaxation and therapy have become popular, meaning I had access to a wide variety of relatively cheap materials.

Among the most popular crafts of the time were the small, multi-coloured, elastic “loom bands” that somehow managed to work themselves into every nook and cranny from children’s noses, to between the cushions on every sofa. I bought a couple of books full of patterns and models to make and even bought some beads and charms to incorporate into my designs. I spent many happy hours engrossed in the craft and I don’t suppose many people are excited to receive a huge bag of elastic bands for their 20th birthday.

Although the products of my efforts were somewhat cheap and cheerful, they got me a lot of attention when I was wearing the bracelets, particularly off admiring children. They also made great gifts when I wasn’t sure what to get someone.

Image description: a black bracelet with silver stars woven in.

For our first Valentine’s Day together, I bought Jarred the clichéd aftershave, and also made a dodgy-looking Kylo Ren and Rey out of the loom bands, characters we had both adored in Star Wars: The Force Awakens, and The Last  Jedi. Jarred found them particularly charming, but one of the bands had snapped whilst in the gift bag, and Kylo was decapitated by his own light sabre. Fortunately it was easy enough to weave another band into its place, although his head is slightly askew to this day.

My personal favourite of my creations is the skeleton I produced using white bands, with silver beads for ball-and-socket joints and black beads for eyes. It was far easier to create than it looks but is still effective, and makes quite the addition to the pin-board beside my bed.

Image description: loom band skeleton.

Childish as this craft may seem I enjoy it and find it relaxing, and I enjoy the looks on people’s faces when I surprise them with a little model. They might not be costly or glamorous but people appreciate the time and skill that was put into creating them. All in all it seems to me to be a good use of my time, and is a definite improvement upon being bored and broody.

Can’t Be Treated.

You may have heard the saying “there’s more than one way to skin a rabbit” and I used to believe that this was true when it came to treating a disease. I’ve been through puberty since then, which is enough to make anyone a little cynical, although I have come to realise that the efficacy of a treatment is not always down to the treatment itself but how it is administered. At least, this is my personal experience of Cognitive Behavioural Therapy (CBT).

Graded Exercise Therapy had failed me but surely CBT would help me to control the depression that had blossomed from that experience? Nope.

The problems started when the therapist decided I wasn’t depressed (self-harm and a suicide attempt seem pretty indicative to me, but I’m not the expert), and that the CBT would somehow cure the physical symptoms of my CFS. While the behavioural aspect of CBT, which means making lifestyle changes, is undeniably beneficial for CFS sufferers, I had already been through all that as by this point I had had the condition for over 3 years.

The problems escalated when I was informed that the CFS wasn’t nearly as bad as I had said and that I was merely seeking attention. This was news to me but I could understand why someone might perceive my condition this way. The symptoms don’t visibly manifest themselves and I was smack in the middle of puberty which is a difficult and delicate time. I decided to ignore the warning signs and continue anyway, as it appeared I hadn’t learnt my lesson from the previous physiotherapy experiences.

More problems reared their ugly heads; I can’t say I was too surprised at this point. The therapy office was extremely difficult to get to as a wheelchair user but they refused to come out to me until we agreed to meet in my school during a break time. I also wasn’t being independent enough; I couldn’t afford a powered wheelchair so relied upon an assistant-propelled one, and at the time no other option was available to me. It was even implied during one particularly bad session that my family were holding me back and refusing to let me reach my full potential. By this point I considered the therapist to be somewhere between a moron and Taylor Swift. To give that context, I don’t especially like Ms Swift. The therapy was actually making my mental health worse, not better.

Eventually the time came to review the effectiveness of the therapy, and I’ve never told such a big lie as I did then. I told them I was practically cured and no longer needed their support simply to get myself away from them. Perhaps I should have reported my concerns to the authorities, perhaps I should have spoken my mind. I don’t know. All I could think of at the time was my own self-preservation, and my need to get as far away from the CBT as I could. It became water under a bridge and I moved on.

About a year later I found a private counselling service. I was allowed to take a course that was described only as generic counselling and not CBT, but what I received matches the description of this far more closely than the actual CBT did. Given that it also targeted the depression instead of the CFS, which was what I really needed the help with, it’s not too surprising to say it worked wonders.

Unlike GET, I am not against CBTs’ use to treat CFS. What I am against is it being administered to address the CFS when help is needed for a different reason, and the case being handled with all the insensitivity of an anaesthetised slug. CBT is helpful but only when administered correctly.

Diary of a Disabled Persons’ Fiance; by Jarred Triskelion.

If I did not fixate on the wheelchair the first time I met Mini, it was only because I am a bloke, it was a freshers week party, and she was a busty blonde. I am no saint and, though my intentions were honourable, some of my thoughts were decidedly not. Most people that find out I have a disabled girlfriend treat me like I’m some kind of hero, but I am no better or worse than any other man. Truth be told, Mini is the hero for putting up with my many faults and failings. At the other end of the spectrum people tended to assume I was only with her because I saw a disabled woman as an easy lay, and was taking advantage of her.

Truth be told, I was so nervous and awkward that it was only because of Mini’s persistence that I ever found the courage to ask her out. It was often the people who thought themselves the most virtuous that assumed the poor, helpless disabled person must have been manipulated into wanting an intimate relationship. They were so determined to keep her safe, it never occurred to them that she might be capable of making her own decisions. Do not get me wrong, there are vulnerable people out there, but Mini is not one of them. Since we got engaged, people seem less likely to question my motives, but the hero worship has only got worse.

It is hard to say how being with a disabled person has impacted my life. For one thing, Mini was already disabled when I met her. I can only imagine how hard it must be to plan a life with someone, only to have everything change in such a dramatic way. For us, the wheelchair has always been a factor, which has shaped the places we go to and the things we do. We often go for a pint in The Griffin because it is accessible, but also because I like a pub with some history behind it. Had Mini not been disabled, we might have ended up making The Three Legs our regular watering hole. Given that they are both decent pubs, which one we go to is somewhat arbitrary. There are a few things that being with Mini stops me from doing; camping and hiking come to mind. Any relationship requires compromises, and a relationship with a disabled person is no different in that regard.

There are ways my life is negatively affected, of course, and this would not be an honest account without mentioning them. When you love someone, you feel a primal drive to keep them safe from pain and suffering. It is hard to put into words just how powerless seeing Mini at her worst makes me feel. There is also the practical fact that everything requires advanced planning, which makes spontaneity impossible. When Tidal Championship Wrestling changed venue recently, we could not just turn up at the next show like everyone else. I scouted out the accessibility of the venue itself, plotted a route there that took curb drops into account and, when we got there, had to hunt down the proprietor so he could let us in the back door. Finally, there is the nagging fear that Mini might have found someone better than me were it not for her disability. I realise that is my depression getting the better of me, but the fact that she would have had more dating opportunities, were she not disabled, means it persists.

That Mini is an intelligent, witty and beautiful young woman is in no way diminished by her disability. She is, without a shadow of a doubt, the best thing that has ever happened to me. Any negatives impact that her disability may have upon me is more than mitigated but the positives that come from being with a woman as wonderful as she is. I love her and I look forward to spending the rest of my life with her.

Image description: taken at a photo shoot. My husband and me are stood side-on to the camera, bodies facing each other but looking towards the camera. My hands are on his shoulders. I'm wearing my purple cardigan, & a black dress with a silver sequined skirt. Jarred is wearing a black t-shirt covered in occult symbols.

GETting Nowhere.

Chronic Fatigue Syndrome (CFS) is one of those strange conditions that has no real treatment protocols assigned to the disease, mainly because so little is known about it, but also because the symptoms are so variable that one treatment won’t work for everyone. Aside from various painkillers, anti-sickness medicines, and sometimes antidepressants, most treatments for CFS aren’t actual medicines. One of these other treatments is Graded Exercise Therapy (GET).

GET is a process where a low level of exercise is performed every day and the level of exercise increases at regular intervals, until the patient is able to undertake normal everyday exercise. This is particularly useful for injuries such as damaged bones, muscles, or tendons and ligaments, allowing the tissue to gradually repair itself and return to its former healthy state. However I have yet to figure out how GET helps CFS sufferers, which is now believed to be an autoimmune neurological disease of the brain and spine. All the same countless CFS sufferers are subjected to GET, myself included.

I started GET in October 2011; at this point the CFS wasn’t particularly bad. I was able to walk, albeit slowly, around most places, and if I rested regularly I was able to live a relatively normal life. The physiotherapist at the local hospital was bubbly and friendly and we had an in depth discussion about my current level of activity, and which symptoms impacted me the most. She then observed me doing a few basic exercises included step-ups and star jumps, and counted how many of each I could perform before reporting a flare up of my symptoms. I was then assigned a certain number of steps, step-ups, and star jumps to do daily, increasing each a little every week. This process ignored one vital factor though; what I could do as a one-off is not the same as what I could manage on a daily basis.

I started the exercises the following day and for the first few days it went swimmingly. The problems started when I had to increase the exercise; my legs burned with every additional step-up and the star jumps repeatedly jarred my back, which was one of my most painful symptoms. We contacted the physiotherapist; I was told to work through the pain barrier. For some strange reason I thought the professionally trained and experienced physiotherapist would know what she was doing and so I stuck to her advice. The pains got worse with each session and I needed more resting periods. The fatigue grew until it felt as though I was wading through treacle with a lead weight tied to my neck. Even the few steps I had to walk became pain-ridden and exhausting. I carried on regardless, sure that one day I would pass through the pain barrier as I had been promised.

A few months later I returned to the physiotherapist far weaker than I had been before. Apparently I just wasn’t trying hard enough. I was advised to buy my own wheelchair but not to become dependent on it, using it minimally. This was the point at which I became skeptical; I hadn’t needed a wheelchair before and now I did, but I was told that the GET wasn’t responsible. However, I was desperate for something to make me better instead of worse and since this appeared to be my only chance, I continued.

A matter of weeks later I had to stop. Just rolling out of bed was an exercise in itself, and the stairs were more like an Olympic sport than a mode of getting around. I needed the wheelchair more and more and more. Despite stopping the GET I continued to get worse for about a year; once on the downward spiral, there was nothing to stop myself from falling even further. I ended up where I am today; able to walk around a small apartment for the most part, but needing my wheelchair for everything else.

At first I blamed myself for what had happened. Maybe if I’d tried harder the outcome would have been different. Maybe I was just weak and pathetic. However, when I look back on this, I consider it to be no coincidence that everything went to pieces when I started GET. It might not be entirely responsible for the outcome, but it was the trigger. My naivety towards some medical professional’s attitudes to CFS didn’t help, nor did my inability to respond to the symptoms quickly enough, but I consider myself to be relatively free of blame. GET certainly has its place in modern medicine, but not to treat CFS, which is just too complex for so simple a treatment.

Movie Magic.

I’m a huge nerd (surprise), and practically wet myself whenever a new Marvel or Star Wars film is released. 2018 alone should be enough to dehydrate me, and I’ll be spending so much time in dark rooms watching films that I’ll probably develop rickets to boot. I already use a wheelchair so it’s not like this matters exactly.

One of the best things about being disabled is that I can get a friend into the cinema for free as my carer. Then I receive a student discount on my ticket and I use my handbag to smuggle snacks into the cinema like the bad-ass gangster that I am, saving us even more money. I’ve often spent less than £10 going to see the latest blockbuster at peak times, making trips to the cinema with friends and family a frequent occurrence. The local cinema is highly accessible with modern lifts, smooth floors, open spaces, and spaces for my wheelchair in every room, rendering it a safe bet for a good night out, particularly when paired with a trip to the pub afterwards. It’s clean and warm, and laughing at the antics of Deadpool or Star Lord in the company of like-minded people is always a pleasure.

A couple of years ago the film about Stephen Hawking was released, and naturally I was interested in seeing the life of one of my roll models (sorry) depicted on the silver screen. I went to see it with my best friend and we both thoroughly enjoyed it. However I couldn’t help noticing that as the lights came on and people filed out of the cinema while the credits rolled, that the majority of them would give me sympathetic looks despite having spent two hours exploring patronising attitudes to disability. Sat in the pub afterwards holding a drink in my gloved hands this made for amusing conversation, and the irony of the situation was not lost on me.

I know I’ve mentioned the fact that being in a wheelchair means that I can go and see kids’ movies without judgement, and the same applies for arriving at the cinema draped in Star Wars paraphernalia and squeaking whenever BB-8 made an appearance. On the way out I can’t help zig-zagging from side to side while emitting “pew, pew, pew” noises pretending to be an X-wing as part of The Resistance, and not one other movie-goer batted an eyelid. I must also admit to occasionally using my walking stick (which is glittery because if you need to use a walking stick, you might as well make it a stylish one) as a light sabre around the flat, doing my best to imitate the infamous sounds while Jarred buries his head in his hands in despair. My father taught me well…Image description: BB-8, the orange & white droid from the new Star Wars trilogy, peering around a corner aboard the Millenium Falcon.

The Battle of the Wheels.

A collaboration between Diary of a Disabled Person and Seeing ME in Reality.

It surprises many people that self-propelling a wheelchair takes a lot of effort and energy; after all you are pushing the weight of both yourself and the wheelchair with smaller muscles in your arms. While this is often suitable for those who still have some upper body strength and motor control, it is not a viable option for those without such strength. This group includes CFS sufferers, a condition which affects both of us. We are left with two options; a powered wheelchair or a manual wheelchair pushed by another person, and the experiences of those using these wheelchairs are more different than you would imagine.

Using a Powered Wheelchair: (Diary of a Disabled Person).

Powered wheelchairs are phenomenally expensive, as I found out when I bought a second-hand one for over £1,000, and are also heavy and virtually impossible to fold up when not in use which made transporting it extremely difficult. Despite these disincentives the powered wheelchair gave me a freedom and an independence that I had not had since first falling ill a few years before. It had been years since I had been able to leave the house on my own, as up until then I had been reliant on having someone with me to push the wheelchair. All of a sudden, I could go out when I wanted, to where I wanted. I could go to the doctors on my own, I could go and look at the items that specifically interested me in shops and ignore the rest, and I could go to school under my own steam. I finally had the independence of a normal teenager, and it both thrilled and scared me a little.

Soon enough it was time to fly the nest and go to university, something which would have been impossible without the ability to go out on my own. I couldn’t afford carers and the assistants provided by the university were not permitted to leave campus and go to students’ homes. Even when an assistant didn’t turn up, which occurred more frequently than I would have liked, I could still get to lectures on time, albeit with a small struggle.

Now I live in a city centre apartment surrounded by shops, cinemas, museums, galleries, pubs, cafes, restaurants, and public events. I can go out at any time without relying on my long-suffering fiancé to get me there, who has his own stuff to do anyway.

There was one other significant benefit to using a powered wheelchair that I had not anticipated. When I was being pushed by someone it was rare that people spoke to me. They would always speak to whoever was pushing the wheelchair under the assumption that I couldn’t communicate, often asking questions using “she” rather than “you”. While in the powered wheelchair, although some people still continue to ask questions about me to whoever happens to be with me, or just ignore me if I’m alone, this sort of treatment is a lot rarer. This does have the minor inconvenience that charity representatives will now stop me in the street to ask for donations, but aside from this, it’s nice to be treated as a person again, even if I am a motorised one…

Using a Manual Wheelchair: (Seeing Me In Reality).

Wheelchairs are an emotive subject for those who use them and those who don’t. I haven’t spoken much about my wheelchair story if you want to call it that. After a significant relapse of my M.E/CFS, which left me unable to leave the house for three months my options were limited. I couldn’t go out with my family and at the time we didn’t know how long this new reality would be for.

I fought against my Mum’s outlook that I needed a wheelchair because I didn’t want to get stuck. I was petrified of how people would react to me, but above all else, I didn’t want to face up to how much I had deteriorated. I was fifteen and my world had irrevocably changed.

Eventually, without my knowledge, my Mum borrowed a wheelchair from our doctor’s surgery. I had no idea how to react,  I was devastated but came to terms with it slowly. Henry as I called the wheelchair got me out of the house again.

I learnt quickly that wheelchair users need thick skins and that for as bulky as the metal we sit in, being invisible is a usual occurrence. I think that phenomenon is universal regardless of whether like me you use a manual wheelchair or electric.

I have been lucky that several times I have been offered an electric wheelchair, which is a great opportunity that I am thankful for, but at the same time, I know I would be an energy-depleted mess halfway up a tree. I need to conserve energy, which is why I have someone push me as it takes a lot of the hassle of navigating away. I also live in rural area, so transporting an electric wheelchair would be complex and add more effort to each outing. So whilst sometimes I do want to be independent and go exactly what I want, due to my health and where I live it isn’t very easy. If I were to live city central like Em, then it might be worth the investment and change.

Over the years I’ve gotten used to taking displays with me in shops or nudging people due to bad driving (not mine), you have to see the funny side of temporarily wrecking shops and apologising profusely to people who got touched by the metal I sit in. To me it’s amazing the lack of personal space and reaching over people will do to an individual in a wheelchair, but as soon as you enter their personal space they get touchy. Conversely, I was surprised at how vulnerable I felt, I relied on the person pushing me to get me around safely. If I were left momentarily, people being truly invasive would swarm me.

I have to say I do feel invisible often from my wheelchair. It is a strange feeling when you are ordering something in a café and the barista talks to the person behind you, rather than you. I learnt to just keep talking and to let any off colour comments go over my head. I would say regardless of the type of wheelchair you would face some of the same invisible or negative experiences. It is amazing how invisible you can feel when out and the flipside being how much staring many people do. I always smile at people when I catch their eye, as I believe it humanizes the person in the wheelchair. Most of the time its curiosity that makes people stare.

Wheelchairs and any other aids rarely cater for all sorts of heights and needs. I am pretty tall  (5 11″) and wheelchairs are too short for me.  Luckily I had my latest wheelchair adapted to suit my height better but that again was really complicated. It’s not exactly right either but it’s better than it was. Wheelchairs are expensive and not great for catering to different heights and different needs. I am waiting for them to put integrated cup holders into one of the arms but that might take a few years to come through. Wouldn’t that be great?

Sometimes I would love the independence to go out and about and not have to rely on someone else. It isn’t that often I feel like that which means to me I’m too ill for this to change right now. I would need to be able to drive myself around realistically to make a change in wheelchairs necessary.

I think most people who need a wheelchair at some point or another end up with an attendant wheelchair, which is the stepping-stone for them finding a good fit for them. It’s a personal choice depending on people’s unique circumstances.   Maybe in my future, I might change over to an electric wheelchair but for my life now a manual fits my life.