Don’t worry, there’ll be an actual blog post soon (like, when I get out of bed), but for now enjoy this Pride sign I made.
Don’t worry, there’ll be an actual blog post soon (like, when I get out of bed), but for now enjoy this Pride sign I made.
Recently I was trying to coerce my dad (Mini’s grandpa) into the use of a rollator. In October he had a fall, lost his balance, and broke his collar bone when he landed heavily on his left side. My mum was asking about walking aids, as one of their neighbours has a mobility scooter. I pointed out that, with them having just moved to a new house without a garage, means of storage would be limited. I also had to remind them that they need to be able to get any equipment into their car, something which I have much painful experience of thanks to ferrying my delightful daughter to and from university.
This started me thinking, something which Mini can confirm as a sign of imminent danger. Transporting a disabled person around takes a lot of planning. Suddenly I saw in my mind’s eye an episode of Thunderbirds. Picture, if you will, plenty of specialist equipment, needing a military level of planning for the task at hand, complete with a secret Island base to store and prepare the equipment.
Welcome then to White Rose Rescue (Edit: the White Rose is the symbol of Yorkshire, stemming (get it, stemming!) from the War of the Roses, where Lancashire (red roses) and Yorkshire (white roses) poked each other with swords for a bit. The hostilities continue to this day), otherwise known as Trundlebirds. This is run by the T’Racy family (Yorkshire joke), and has equipment suitable for everyday situations. All this equipment is stored in a secret bunker (well, ok, garage). Our garage even has a remote-controlled power door. However, none of the trees next to the driveway move, and are more likely to damage the equipment than be damaged should you collide with them.
The available equipment is as follows:
Trundlebird 1 (mobility scooter). This is a rapid access ship designed for local missions. It has suspension so that the operator has a comfortable ride, and also has useful features such as a shopping basket and brakes. Many a successful mission to the local supermarket have been carried out successfully, to date.
Trundlebird 2 (car). This is the main equipment transporter. Equipment appropriate to the mission can be loaded and used where-ever, accommodating Trundlebirds 1, 3, 4, or 5. It allows multiple occupants to travel together with certain combinations of equipment, even if they ride on the roof.
Trundlebird 3 and Trundlebird 4 (rollator and manual wheelchair respectively). These are individual piece of equipment for non-local missions and can be loaded into Trundlebird 2, but are rarely both taken on a mission at the same time due to the fact that it is somewhat difficult to use both pieces of equipment simultaneously.
Trundlebird 5 (Blue Badge, allowing legitimate access to disabled parking spaces in the UK). This is the satellite that controls the deployment of missions, albeit without the orbiting part. This is most useful for missions using Trundlebird 2. Although the Blue Badge is technically not a machine, it is most important when trying to get a disabled parking space as near as possible to the mission location. This allows rapid (or relatively, at least, these things are complicated) deployment to the scene of the action.
Trundlebird 2 has recently been upgraded, but unfortunately not to a Porsche. The previous version allowed the transportation of Trundlebird 6 (the eponymous powered wheelchair used by Mini), and it even had a special loading ramp. The whole set up failed spectacularly as you could not get everyone, Trundlebird 6, and the ramp into Trundlebird 2 at the same time. This has been alleviated as we now rarely have to transport Trundlebird 6, because she wanted to be “independent” and “get married” or something.
I have opted to be the head of the organisation because I am the driving force; I do most of the driving. I suppose I could be the chauffer, making me Parker. However, I only have a Ford rather than a Rolls Royce, and I can’t distinguish pink cars from grey ones because I am colour deficient (which has led to some interesting situations itself, including me being convinced that a grey rabbit was actually green. (Edit: this really happened)).
At least for myself and Mini’s Mum (Minimum?), we have the option of using Trundlebird 2 and all the different equipment. Planning involves selecting the correct item for the mission, and then starting out immediately. Mini can set out on a local mission, but missions further afield need planning. These are dependent on such things as bus time tables, accessible vehicles, and being able to convince the train companies that you really do want to travel tomorrow and unfortunately didn’t buy the levitation upgrade.
Well, I’d better get on with planning the next mission as we need to pick up some prescriptions for Minimum from the local pharmacy. Trundlebird 1 will be best. I’ll just go and open the bunker…
Let’s be honest, we’ve all had plenty of cringe-inducing moments that keep us awake at night when you most need the sleep. Much as I would like to say otherwise I am no different in this respect. However where I differ from the norm is that I can blame these horrendous instances on my disability, or more specifically the so-called “brain fog” that plagues people with various chronic illnesses.
As a member of a small team in the workplace I grew accustomed to the little quirks and idiosyncrasies that would make us the perfect subject for a sitcom, were it not for the fact that this idea has been flogged one too many times. Organising a table tennis tournament for one lunch break has been one of my least serious assignments, but being asked to arrange a “cheese day” takes the biscuit (because nothing goes better with cheese than a nice selection of savoury biscuits). For cheese day we are all required to fetch different cheeses to work, and during the team meeting we’ll all enjoy samples of them all, which for an office is an undeniably weird thing to see displayed on the calendar.
Imagine my embarrassment then, when I realise that I had not sent the email invitation to my colleague, but instead had sent it to someone else of the same name in my address book. Fortunately he had an excellent sense of humour about it and is now considering implementing a cheese day in his own office. So if cheese day goes viral, you know who to blame; parents who give their children common names. Like Emma (thanks mum and dad).
I am particularly afflicted with brain fog first thing in a morning, which makes taking my morning medication rather interesting. The most common problem arises with a tablet I take both in the morning and at night in different doses. If I get them the wrong way around, taking the larger dose in the morning rather than the evening, I will spend the rest of the day in a drowsy stupor. This having occurred on a work morning means that technically I have been to work while high and got away with it, a claim that some would use the term “badass” to describe.
Perhaps more worrying was the occasion when I tried to inhale my nasal spray through my mouth, which was a somewhat interesting experience.
While living in halls of residence at university the fire alarm being set off at unthinkable hours by drunk people trying to use toasters was a very regular occurrence. When the fire alarm exploded into life at 2 am in my first week away from my parents I wondered why my dad hadn’t switched the burglar alarm off, which would occasionally go off at night when a spider crawled across the sensor (and never when someone was trying to break in). This is despite the fact that the fire alarm sounded completely different, was much louder, and included a red flashing light on the ceiling for those who couldn’t hear the alarm. Needless to say I was one of the last to arrive at the convening point as we were evacuated.
There is also the story of how this photo came to exist:
Discussing brain fog with a few online friends an accidental misreading lead to brain fog being substituted with brain frog in all of our messages. Given that for some strange reason I have a plushie toy frog (I still have the inventively named Croaky) it didn’t take long before dad took this photo for me. Selfies were harder back then.
By the way, if this becomes a meme the extra publicity is much appreciated.
This is Sooty. Sooty decided that my walking frame was most definitely a cat toy. Then Sooty decided that my tuna sandwich looked tasty.
10/10 would adopt him if I could.
Some would say that completing a degree with a disability is quite an achievement, but as a Millennial even the greatest of achievements pales in comparison to the terrible flaws displayed by my generation that will surely be the end of society itself. People will always find faults if they are looking for them and as such, it has been made apparent to me that being disabled with any sort of medical knowledge is completely incompatible, because surely everyone with this knowledge is in perfect health all of the time and would cure themselves with their knowledge should they fall ill.
Approximately a year ago I was diagnosed with iron deficiency anaemia, which I have since recovered from. At the time the response I invariably received upon revealing my deficiency to someone was, “but I thought you were a nutritionist”. The truth was that a tablet I was taking limited the absorption of iron in the intestine and despite my dietary iron intake being perfectly adequate, most of the iron was quite literally being flushed down the toilet. Of course, despite the fact that I have spent three years and thousands of pounds dedicated to the subject, the person I was speaking to knew far more than me having read about it on Wikipedia, and I was just making up excuses for being a poor nutritionist. Just about anyone with any medical knowledge or experience in a clinic will roll their eyes at this point; while I can hardly criticise using the internet, because well… I’m on the internet, it can be the bane of our lives.
The same logic has been applied to my disability; admittedly there are a few dietary tricks that can help maintain energy levels throughout the day, but certainly there is no scientific evidence showing a particular diet that will immediately cause me to leap out of my wheelchair completely free of disease for the first time in years. The closest I ever get to feeling like that is when someone offers me chocolate cake, because although I know the many ways in which cake could potentially kill me, I like cake, particularly the chocolate kind. The fact that I am chronically ill is frequently used to evidence my incapability in my chosen field, which is almost as annoying as receiving a smug look before being told nutritionists shouldn’t eat chocolate cake. Why this would apply specifically to nutritionists and no other human being on the planet is beyond me, but clearly I know only that I know nothing.
There is also one deep flaw in the thought process behind such accusations; nutrition is very rarely used as a cure, but is actually used to treat a disease or manage symptoms. Ask any diabetic this and they will confirm that no matter how many visits they have with a dietitian, altering their diet will not make their pancreas behave itself, merely managing the consequences instead. Likewise I use nutrition to help me manage the symptoms of my condition, not to cure it. By my albeit somewhat biased logic, this makes me an even better nutritionist, as I have experience in altering the diet to suit my needs while still satisfying my cravings for chocolate cake. It is by stating that nutrition rarely cures to people I deem to be “Nutritional Nutters” that I return their self-satisfied smugness, in a dish that is far more nutritious when served cold.
Despite the recent surge of developments in medical research surrounding the condition, the internet is rife with a myriad of pseudo-scientific theories from non-medical experts describing what causes the condition, how it can be prevented, and how it can be cured. These theories are often demeaning to sufferers of M.E (a.k.a. CFS), claiming that we simply don’t look after our bodies or that it is nothing but a cry for attention. They also tend to support the claim that M.E is not a real disease, reinforcing the negative stigma surrounding what I can assure you is a very real illness.
There is, however, one redeeming feature of these theories; they can be down-right hilarious.
One I hear a lot from people who know that I have a first class honours degree in nutrition is that my illness is the result of multiple nutrient deficiencies, and could be cured by using over-the-counter nutrient supplements. Considering my knowledge of the subject, my ability to tailor my diet to my needs, and to recognise the symptoms of nutrient deficiencies in myself and others, this theory denies all logic. Similarly, if I needed nutrient supplements, the doctor would prescribe them. The only noticeable effects of the store-bought nutrient supplements in the absence of a deficiency is the excess nutrients excreted (meaning the expense quite literally gets flushed down the toilet) and sometimes the onset of nutrient-overdose. Which can have quite serious and permanent effects, such as death.
This is far from the only ridiculous theory I hear. One commonly encountered by M.E sufferers across the world is the idea that we simply need to exercise more. Our “laziness” has led to us being so unfit that this becomes symptomatic. This of course does not apply to all the other unfit people on the planet who suffer no symptoms at all when resting, or walking to the bathroom. I have been told time and time again that my symptoms result from muscle wastage, despite the fact that while I do have much weaker muscle tone than average, you can still see some muscle definition across my whole body. I am told to push through the “pain barrier” but I can assure you that the pain barrier does not exist for M.E sufferers, and the pain simply gets worse the longer you remain active for.
I have also been told to get pregnant. The logic behind this one is as follows; after undergoing nine months of growing a miniature parasite inside your body, which takes a great deal of energy, and then squeezing the thing out like trying skinny jeans on while being in denial about your clothes size (we’ve all been there), the maternal instinct of holding the baby would override the tiredness signals from my brain. Now I don’t know about you but my personal encounters with new parents show a distinct trend of utter exhaustion from the lack of sleep and constant nappy changing, plus the energy requirements for mothers who choose to breastfeed are substantial. This is all without mentioning the fact that attempting to cure a disease is entirely the wrong reason to have a baby (I know a lot of women suffering from endometriosis hear the “just get pregnant” theory a lot too).
The most ridiculous theory of them all, however, is that I am possessed by a demon and need to be exorcised. I doubt this one needs to be explained and I have nothing more to say about this one other than “what the F is wrong with some people?”.
So please, medical research is a serious career path and these people know what they’re talking about. Listen to them!
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…