M.E Awareness Week Question and Answer Vlog.

Transcript:

Hi guys,

It’s the big day in M.E Awareness Week, and as promised, I am going to publish a video of me answering your questions about living with the disease. So, without further ado; we have a question from Bre-Am (I apologise so badly if I’ve pronounced that wrong).

Bre-Am has asked me if I appreciate it when people offer me help, or if they’re only doing it to show off to others.

I think if someone sees me struggling, I can’t open a door, I can’t reach something, or they just think I might need some help, and they come and ask, it’s always appreciated. Now, I might say to them “yes, actually, I would appreciate some help,” at this point, or I might say to them “no, thank you, I’m OK.”

It’s OK to say no, and it’s OK to want to be independent. If you ask someone disabled if they want help and they say no, that is OK. Just say “OK, no worries, I’m here if you need anything,” and walk away; there’s no shame in that.

Obviously, asking for help I am never going to take offence to; someone’s trying to be nice, and if I say I want help and they do help, then that’s brilliant. The important thing is to always ask first.

Now, my personal experience is that I’ve not had many people do this to show off to others. Very occasionally you’ll get a charity representative in a middle of a shopping centre who might try and be seen to be inclusive with the disabled person, to be seen as a better charity representative.

Other than that, very few people do it to show off; the biggest problem is actually someone asking if I need help and continuing even after saying no, or just barging in without asking in the first place. It’s my personal space, it’s my equipment; the wheelchair is an extension of my body; do not push yourselves on me unless I ask for help.

But, you know, the offer is always appreciated.

And then we have a question from Sophie, who has been a friend for a long time after we met on forum for people with CFS. She has asked me how my experience of CFS compares to that of others.

I think there are some central aspects to this disease, which like every person with this disease on the planet, I have experienced. That is things like the fatigue, pain, headaches, dizziness, itchy eyes, and poor short term memory and concentration. I think also that the general disbelief in the condition that I have encountered is pretty universal.

But, my experience does differ in things like I went to a GP who believed in CFS, and I was diagnosed within 12 months of becoming ill, and I got access to painkillers, physiotherapy, and counselling. That is really, really good; some doctors don’t believe in the condition and refuse to have anything to do with it, and they won’t diagnose or treat it at all, and people end up going from GP to GP. So I was very lucky in that respect.

I think CFS varies in severity; some people are house bound or bed bound, and for them the wheelchair to go outside in would be useless. They don’t have the energy to even do that. For me, the powered wheelchair has enabled me to be independent, get an education, get a job, and live a relatively normal life, and again I’m very lucky in that respect.

And I think the other big thing that separates people with this illness is actually experiences with social services, and this particularly applies to children.

When I was a teenager someone anonymously reported my parents to social services, claiming that they were using me as a sort of disability benefit fraud, that they were forcing me to be in a wheelchair for the attention and financial support. Social services barely looked into it before dropping the case; they said it was ridiculous, but that mark is still against my parents name and they’ve never been allowed to defend themselves. That is still quite a sore point for us because on their record there is a complaint against my parents that will always be there, however wrong and invalid that complaint is.

Some people never experience that, and they never experience how devastating and how heart-breaking that is; to be the child in that situation, to be the one who is getting their parents into trouble for being sick. It’s awful.

But, again, I’m quite lucky. There are people who get separated from their families, and out into institutions, and other cases that go to court; these are not rare, I know people who have been through this.

If you see the Millions Missing movement on social media, particularly Twitter, that’s what it’s all about. It’s talking about the people who get removed from their families because people don’t believe in their illness, and think that their parents are psychologically abusing them. So there’s a big movement at the minute to get CFS recognised as an actual illness, and to stop social services marching in and pulling families apart, which only tends to make the illness worse, and it’s sheer madness.

Now that’s it for all the questions I’ve had about living with CFS, and I’m going to take it that my blog is so good, and so well-explained, that no one has any more questions about the disease. I hope these answers have been good, but if you have any more questions feel free to ask; I’m happy to message or make another video.

So, please, please, please keep a lookout for tomorrow’s blog post, which is all about the ridiculous theories people have about M.E, what causes it, and how to treat it. It is hilarious.

Also, don’t forget, do donate. 25% of this week’s donations are going to the M.E Association, so not only do you support my writing career, but also a charity who support people like me.

So please, please, please; donate, like, subscribe.

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Body Negativity.

Just about every other article on the internet right now is about how we should endorse body positivity, and put a stop to body-shaming under any circumstances. On the whole, I agree with this sentiment. Someone shouldn’t be made to feel ashamed and embarrassed for the way they look; I was permanently teased throughout school for having frizzy, uncontrollable hair, glasses, and crooked teeth, as well as somehow managing to be simultaneously too fat and too thin. While I believe that a healthy weight should be maintained where possible, my concern on this front is for health and health alone, not how someone appears. In fact, I fully support women who have the confidence to display their beauty whatever their size. Women like WWE Raw wrestler Nia Jax have proved that size bears no relation to looks whatsoever; she’s walked down the catwalk at a fashion show and the ramp down to the ring with equal confidence, as she should do.

However, body positivity does hold one small but vital caveat for me. How the heck am I supposed to love a body that has repeatedly tried to kill me, and malfunctions more often than a British Leyland car? It seems like I’ve spent half my existence being poked and prodded by medics, and they’re not marvelling at how healthy I am. What might look alright on the surface may as well be a carefully decorated cake that tastes like damp and mouldy cardboard (disclaimer: I don’t know how this tastes, and I don’t want to find out). I try not to care too much about how big my wheelchair makes my butt look, but I still find it a little difficult to love a body seemingly hell-bent on self-destruction.

The media constantly tells me I should love my body no matter what, but no one in the spotlight seems to recognise that no matter how much love I give my physical body, that isn’t going to fix me (Coldplay style). I can stand in front of the mirror, wink, and say “you got this” in a cheesy teen movie voice as often as I want; my body is not going to suddenly and miraculously repair itself, however much I would like it to. It continues to amaze me that a thought pattern as shallow as this has taken hold of everyone so completely that they refuse to hear a word uttered against it.

On the other hand, a lack of general body positivity doesn’t mean I hate myself entirely. I think I can take pride in my relationship, my achievements, my work, and my writing. I think I’m an alright human being to be around, although I’d verify this first with someone who knows me well. I also think that there’s more to me than how I look. Body positivity really is great; it’s just not the be all and end all we think it is.

Off the Rails.

Trains; the sworn enemy of wheelchair users. They’re one of the biggest obstacles disabled people face on a daily basis, and what is perhaps the most frustrating aspect of this, is that there is no need for them to be this way.

I’m not one with the money or time to travel around the UK on a regular basis, and my commute to the office where I have my “proper” job is so short that it takes me longer to wash my hair than travel to work. Still, I’ve had a few experiences of using the trains, and have used three significant, large train stations; York, Leeds, and King’s Cross in London (think Harry Potter).

The first train station I visited was York. I had been on a weekend away on the North York moors with a group of friends from University, and had travelled up to the destination on a mini-bus provided by another local university. On the Sunday, we travelled to the centre of York because Christmas in York is what dreams are made of, but the bus had to return early, meaning we had to use the trains.

The train station was one of the most accessible buildings I had ever seen, with smooth floors, a complete lack of steps, and space to manoeuvre. I was escorted to the correct platform, where a ramp was already waiting for me in the doorway of the train, and a wheelchair space had been reserved for me in the carriage. The doors of the train were a little tight to squeeze through, but that was my only criticism. Having heard horror stories about the treatment of wheelchair users on trains, I was surprised, but welcomed the unexpected consideration of disability.

After 40 minutes, the train pulled in the station in Leeds city centre. The doors opened, and I was expected to levitate onto the platform, despite prior warning that someone disabled would dare to use their facilities. My friends ran off to get a porter and a ramp while I sulked in the doorway, and eventually a ramp was provided by a very grumpy porter. The station itself was also highly accessible, despite being quite an old building. It seemed mad that the building would cater so well for accessibility, but the trains themselves didn’t.

A few months later, I went to London for the very first time. Leeds failed to provide a ramp and porter, as did King’s Cross, despite warnings in advance of needing the support. Again, King’s Cross itself was so accessible I could have cried, but the return journey was the same, despite even more prompting to provide the resources I needed. I ended up hopping on and off the train while Jarred lifted my wheelchair on behind me, as thankfully we had chosen to use my manual, foldable wheelchair.

Whilst actually in London, we used the tube to get around. Only half of the stations themselves were accessible, and even less provided access all the way to getting on an off the tube, meaning that many tourist attractions required Jarred to push the wheelchair for a long time to get there. There was still a significant gap between the train and the platform, even on the “accessible” carriages. A couple of times, my wheels even got stuck in the gap, and total strangers would have to help us out.

Recently, I booked some more train tickets to London. The website was virtually impossible to navigate, and it took a significant search to find the form describing what sort of seat/space I would need, and what times I would need a porter and ramp at both ends of the journey. Eventually, the tickets were booked, and then something happened that hadn’t the year before. I received an email with my “care plan” listed out explicitly, with what times I would need support, and what seat I would have in the accessible carriage. All I had to do was print this out and show the piece of paper to the porters to prove that I had booked support, and it would be provided. Amazingly, the system was very effective, and it worked perfectly.

You could argue that someone disabled shouldn’t have to book a train 24 hours in advance to gain access to a ramp and porter, and that you should be able to turn up, ask for help, and receive said help. We can’t be spontaneous, while others can, and it is frustrating. However, being able to get on the trains at all without a fight was something special, and is a welcome improvement upon the old system.

They could, of course, negate the problem entirely by having a little common sense; trains that line up exactly with a standardised platform height with a minimal gap, like they modified train stations to do in Japan…

Judgement Day.

People with disabilities face discrimination and prejudice in a variety of forms, be it the obstruction of an access route, the misuse of special facilities, or even just being stared at because we look weird. However, what many don’t realise is that there is actually a lot of judgemental behaviour displayed by people with different disabilities towards each other, and it is just as insensitive and intrusive as any other kind of judgement. I am as guilty as any other when it comes to this kind of prejudice, and will freely admit that I frequently compare my disability to others’ conditions in a distinctly negative manner. Despite this, I still think I have a right to say that this sort of behaviour is unhelpful, perhaps even hindering the progression of those with disabilities within society, and the troubling trend needs to stop.

There are two main scenarios in which the type of judgement I speak of arises.

Firstly, the disability benefits that people receive to pay for special equipment and transport are often a cause for jealousy between those with disabilities. I know of people who are far more able-bodied than myself receiving much larger sums of money, and I know people who make me look like an utter wimp receiving far less. I also know that people of roughly the same capabilities as myself can receive drastically different sums of money. Sometimes people may have hidden aspects of their disability that may increase the need for support behind closed doors that the rest of us cannot see. Naturally, this causes some upsets; ideally the amount of money given out should reflect the severity of the disability and the amount of help needed, but since so many people are involved in the process of awarding such benefits, who’s opinions, experiences, and budgets will vary widely, these financial discrepancies occur.

The outcome is that people become jealous and mistrustful of each other, questioning the true impact of someone else’s disability on their life, or even questioning whether the disability exists at all. I have faced such accusations, but I confess that on a few occasions, I’ve been the culprit myself. I now try not to find out what money other people receive, because if I don’t know, I can’t judge them for it.

The second situation is probably the most common; access to appropriate facilities. Many places only have 1 or 2 disabled toilets or changing rooms, which many perfectly able-bodied people choose to misuse. With no way to tell the difference between someone misusing the facilities, and someone with a hidden disability such as the discrete bags to collect human waste following certain surgical procedures walking out of the disabled stall, those with genuine disabilities face the same judgement as the able-bodied people. Again, I’ve been guilty of this myself, as having to wait an additional 10 minutes every time I wish to use the toilet becomes tiresome very, very quickly.

Admittedly, if people didn’t misuse disabled facilities, then you would know that whoever came out was actually disabled, and the judgements wouldn’t arise. Similarly, if the availability of accessible facilities was increased, the competition for them would decrease, reducing the intensity of the problem.

The judgement and mistrust between those with disabilities can have catastrophic effects on someone’s self-confidence and mental health. It can make people not want to leave the house at all, instead choosing to sit at home idling away the time. It also reflects badly on disabled people, giving those who aren’t disabled a reason to treat us with scorn and judgement themselves. Perhaps the time has come to accept that the term disability can mean thousands of different things, effecting people in thousands of different ways. Instead of sticking our noses into other people lives, perhaps we should be more interested in our own, and how to improve our own circumstances, instead of trying to derail the livelihoods of others.

Worlds Apart: A Collaboration Between Aidan Bizony (The Disability Diaries) and Emma Steer (Diary of a Disabled Person).

There are a great many cultural divides between the UK and South Africa, and unsurprisingly this extends to disability. With two radically different systems of health care and financial support for the disabled, the lives of wheelchair users in either country greatly differs, as do the social perceptions and stigmas surrounding disability.

UK (Emma Steer, Diary of a Disabled Person).

One of the defining features of British culture, aside from an addiction to Gregg’s bakeries and a general disinterest in the royal family, is the National Health Service (NHS). The NHS allows UK citizens to receive medical aid whenever they need at no cost bar a portion of the tax they pay to the government. Of course, the average citizen has to pay for prescriptions, opticians, dentists, and doctors letters, costs which add up to a surprising total, but this system ensures that medicine usually reaches those who are ill regardless of what is in their bank account.

The NHS is under ever-increasing pressure to diagnose and treat more patients in a shorter time span, with less money and resources to support them, and it’s prominence as a topic on the news is growing every day. The fears that the NHS will either crumble under its own weight, or that it will financially ruin the government have lead the public to bemoan anyone who is deemed a strain upon the NHS, and on more than one occasion, I have been deemed one of those strains.

In addition to the cost of my medical care is the financial support from the government to cover the costs of using a wheelchair, as obtaining a suitable wheelchair on the NHS is a bit like trying to herd fifty cats into a bath at once. Since many assume that I am unemployed the moment they set eyes on me, or rather, my wheelchair, it is assumed that the cost of unemployment support can be added to that total. Even for those who cannot work, the stigma should not be bemoaning the cost of their financial support, but bemoaning the lack of suitable work for the disabled.

All-in-all, the bombardment of news articles depicting disability as a strain on the economy, rightfully or not, has led to a whole new set of stigmas about disability. Instead of being pitiful and patronised for our incapacities, we are despised for the effects of those incapacities. It has even been said by a prominent politician that disabled employees are problematic due to reduced productivity and increased costs of adapting the workspace to suit them, but of course he deems disability to be an inadequate excuse for unemployment, and condemns those that are forced to live that way.

The disabled are simply reduced to a number; the financial cost they inflict upon society.

South Africa (Aidan Bizony, The Disability Diaries).

While I can understand people’s frustration with the NHS because, yes, it has its flaws and we must be aware of those, I still marvel at the concept. Leave aside, for a moment, all the negatives that the NHS presents and look at the concept behind the structure: an attempt by the government to give its citizens a good, if somewhat tedious, medical scheme. South Africa doesn’t have the NHS.

Rather than having a government system that provides good, safe healthcare, South Africa’s public healthcare leaves a lot (I really mean “a lot”) to be desired. To expect South Africa, given her history, to have a medical system on par with the NHS – even in its current incarnation – is perhaps a little naïve and overly-critical but I do feel that we could be closer to the ideal of reliable, sustainable, safe healthcare than we are at present.

I know that the South African system is not necessarily the world’s worst healthcare system but, still, it leaves a lot to be desired. As bad as the public system is, I have to admit that the private system (if you can afford the high fees) is good. Luckily, we’re in a financial position to afford private medical care. As fortunate as it is that we can afford good, reliable medical care in South Africa is, it distresses me immensely to see that our premiums continue to increase with practically no rise in the benefits we receive. When you consider that inflation is a real thing, the fact that the benefits don’t grow in proportion to the premiums is all the more disturbing.

To be honest, the medical aid scheme in this country is increasingly becoming a ‘damned if you do; damned if you don’t’ thing.  But, yes, it costs a lot and it does continues to get worse but at least you get the payments you need, right? Nope. The plan that I’m on (which is one of the highest with the country’s ‘best’ medical aid) has had payments declined that I am legally entitled to. For instance: my plan allows for a certain amount to be made available to me each year for “external medical benefits” (e.g. wheelchairs) but I had an experience relatively recently whereby a chair I bought, which was within budget got declined because we didn’t file the correct paperwork. Since the reason the incorrect paperwork got filed was because Discovery, the Medical Aid Scheme, provided us with the wrong forms. To cut a long story short, we were on the verge of taking them to court when a letter from our lawyer to the CEO’s personal assistant lead to the payment we were entitled to six months earlier. The trouble aside, we at least got the wheelchair we ordered. That is until three years later when we had to repeat the process.

As bad as the NHS has gotten when compared to what it used to be; it’s still far better than the public system we have in South Africa. Hell, when I was in England in mid-2015 my parents and I decided to visit a local, NHS hospital in London and were surprised with what we saw. In retrospect, given the exposure we had of the public healthcare system, it is hardly surprising that we were shocked. We discovered that the NHS, public hospitals in England are better than the very expensive private hospitals that an elite of South African society can afford. Needless to say, the benefits of the NHS is a not-insignificant motivation to make the move to England as quickly as we can.

Things Just Got Complicated.

Relationships are complicated. Relationships while one or both partners are chronically ill or disabled results in an explosion of chaos that equals filling a volcano with Coca-Cola and Mentos mints, and then making it angry by filming it with a phone rather than living (and probably dying) in the moment.

Finding wheelchair-friendly date venues is like looking for a needle in the worlds’ largest haystack while blindfolded, and only being allowed to search with your nose and mouth. Lots of places have steps in the door, and the members of staff at such establishments don’t seem to grasp the concept that no, I can’t take a bleeding run up. Sometimes, the rarest of all luxuries will be provided in a ramp, or even more special, a level entrance. Even then, the accessible entrance may require unlocking by a member of staff who is distinctly inside the building, and once inside, the tables may be so tightly packed together it’s impossible to get around. I have even known cases where the tables are very tall, and I need a periscope to see my drink. Best of all, the inaccessibility is usually put down to “well, no one in a wheelchair ever comes in here”, having failed to understand that we can’t get in. So, the same few cafes, bars, shops, and the cinema become second, third, fourth, and fifth homes, and I have loyalty cards for every single one. It’s got so bad, that the café usually has my order ready for me by the time I get to the counter, and they are on first name terms with me.

Once we’ve embarked on a date, the second complication rears it’s rather ugly head. No one thinks it’s a date, probably because going on a date is so complicated in the first place. Jarred is mistaken for my carer so frequently I’m considering buying a bell to summon him when I need his assistance. When he puts his arm around my shoulders, or pecks me on the cheek, the looks of shock and disapproval he receives is something quite extraordinary. They seem to think that he is taking advantage of an innocent disabled girl to get laid, and that I couldn’t possibly figure this out and defend myself if this was the case. It’s not possible for someone disabled to be in a relationship of their own accord is it? Spoiler alert – it is.

Eventually, the relationship progresses to the stage where the two families wish to inspect your partner and their family. Since trains don’t appear to know how wheelchair physics works, travelling any sort of distance is difficult, and sometimes the cost of travel or their work and family commitments prevents other family members from travelling up to see us. While to some couples, this would be music to their ears because Mother-in-law being an anagram of Woman Hitler wouldn’t be so funny without the Mother-in-law clichés, most members of each respective family are actually nice people. Quite a few of Jarreds’ family have managed to travel up to the north of England to see us, and we’ve managed to travel to London for a central meeting point on other occasions. Unfortunately, moving closer to them would distance ourselves from my family, and the problem would simply affect different people.

After a while, Jarred and I moved in together. The challenge here started when none of the letting agents that weren’t exclusively for student accommodation were accessible, so Jarred ended up doing the leg work there. Then we had to find an accessible home near the city centre within our budget, which was about as likely as an Oompa Loompa being elected for the US presidency. Oh… We found an apartment that was so central to the city that it confused Google Earth, and I could access it by entering the garage and going to the rear of the building. It came within mere pounds of our calculated budget, so I put the deposit down on the flat quicker than Usain Bolt after drinking 10 cans of Red Bull before anyone else tried to steal it, and it is now fully christened with tyre tracks on the floor.

Now I just have to organise an accessible wedding…

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 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 that 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 sceptical; 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 on, 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.