Health is often discussed in a way that would imply it is a given untill old age. It is a mindset that is flawed and dismissive of the many factors that can impact our health at any age. It ignores genetic predispositions, accidents and injuries, age related complications, conditions that develop with unknown causes, complications caused by other illnesses e.g stokes, etc.
It is necessary for there to be a shift away from the idea that health is a given, to one where it has an expiration date. With that viewpoint in mind, I ask why does society remain as inaccessible as it currently is? The majority of us will, at some point in our lives experience a level of disability. Despite this accessibility across the board is not where it needs to be to make life equally accessible for all.
Health expires, so why does accessibility remain an afterthought?
We recently were fortunate enough to spend a chunk of time down south visiting my mum. It was a lovely break away from routine, and the kids were over the moon to get to have a ‘extra long sleepover’ with their Granny. If it weren’t for the newly added hand sanitizers that appeared on every corner one could almost forget about the pandemic for a moment.
On our way home we chose to pull in at a service station to let the kids stretch their legs after hitting the que of another incident. The kids dad took them off to the toilets whilst I popped into the shop. I only needed a couple of items, and instantly looked for a basket as one hand is strapped up at the moment due to scaphoid fracture. There were none.
It may sound dramatic to say that I started to feel anxious at this point but it’s true. I can’t hold things in my fractured hand and my other is occupied with my trusty walking stick. In the end I resorted to cradling the items in the crook of my elbow. I dropped them repeatedly. The staff noticed from behind the counter and did nothing other than stare. Other customers, who were incredibly kind, helped me gather up my shopping as I shuffled about, hunted for a basket and confirmed that due to Covid they’d been taken away.
Eventually, feeling really rather embarrassed at my inability to hold a couple of items, I approached the staff at the tills. When I queried the lack of baskets, I was met with a shrug and a murmured grumble about Covid. I asked about how they expected their disabled customers to cope, after all they had watched me struggle and drop my items several times. In reply he simply offered to scan my shopping and bag it for me, let me pay, then he would watch it so I was free to carry on shopping. It was crystal clear that they had not faced with this situation so far.
Numerous charities and research groups have been saying this through out the pandemic; the disabled community are being left behind. Article after article has stated how disabled people have reported feeling overlooked, forgotten, isolated, ignored. Just today there was a piece on how two York Councillors were not allowed to vote on accessible parking in their area as by being disabled they had a prejudice – madness!
Freedom day has come and gone, yet now things have reopened I’ve found that actually I’m running into more restrictions that affect my disability than prepandemic – for example in the same service station they wouldn’t open up the disabled toilets as they didn’t have a designated staff member free to monitor them. They had a member of staff a few feet away though in the ladies directing women into cubicles.
While it may sound like I’m riled up about not very much it’s not something im going to let slide. I don’t by any means think that the staff in the shop should have magically have transfigured a chocolate bar into a basket but they could have offered a bag for me to go around with or to have walked alongside me and helped. Either way I would have been and out in less than half the time if if id just had a little bit of aid. Which is something I’ll put in my letter when I write to them later this week.
What can I do for you today? It’s the standard greeting I find I’m met with at every doctors appointment, no matter the speciality. Perfectly poliet, open ended so therefore inviting me to dive in to the promblem that has brought me to their office. Expcept lately that is not how that questions makes me feel, it leaves me biting my sarcastic answer off of my tongue. Fix me, take my pain away, how about just stop my constant deterioation please and i’ll make do as I am but please press pause in the meantime. Let me correct myself, it’s not sarcasm, it’s truth, it’s honest words from a scared vulnerable person who wont utter them because I know the reality is the Drs are trying but their isn’t much they can do.
I was diagnosed yesterday with Trigeminal Neuragia, along with being informed they no longer expect the sight I’ve lost (the majority of it) in my left eye to return; I can see blurry outlines but I cannot work out shapes or distance. It was a bit of a hit emotionally as whenever I have had Optic neuritis before my sight has recovered fairly well, however this has been going on for a while now and if anything the pain has gotten worse behind my eye, it is incredibly intense. I’m trying not to dwell on this too much while we await my Evoked Potential results and wait for a date for my lumbar puncture test. Hopefully these tests will shed some light as to what is going on currently.
In the mean time I feel much like this blog; I am all over the place, one minute quite happy dealing with things as they come, the next frustrated that despite almost a decade of chronic illness a level of normality is yet to be reached. I’m still fighting against the current of deteriation. It may be as useless as trying to swim the wrong way around wild rapids but it helps to know that I am trying to do something to counter the every growing pill box.
Yesterday afternoon I collapsed outside of my house and started having Non Epileptic seizures and Dystonic spasms. As I was not regaining consciousness I was rushed by ambulance (with blues and twos on) to my local hospital, where I was luckily treated by the lovely doctor who I had seen the last time I was there. The doctor remembered exactly who I was and even where the best place to take blood from me was! I was extremely impressed with how I was treated. I was unconscious for a couple of hours and have very little memory of the event.
Today I am rather sore, but I am also feeling inspired! My illness repeatedly puts me through hell and back, but its ok! I know that no matter what my little Dystonia alien throws at me, I will get through it. The image below depicts exactly how I am feeling.
Whilst Dystonia and Non Epileptic Attack Disorder are truly hideous conditions to have, I could be so much worse off. I could have cancer or another potentially life threatening disease! So I feel blessed that my condition merely limits me.
Through being ill I have had the privilege to talk to and meet some of the nicest people I have ever met. They all support me and give me strength! For example other bloggers and health activists; talking to them is a joy, as they can understand, advise and support me. Another great example are the amazing staff in the chemist by my doctors. I love going in there as I always get a warm welcome and have a quick chat, which puts me in a great mood.
I may suffer from a hideous condition, but I am so much more than just an ill person. I am a health activist, a fighter, I can be anything I want, and I can achieve anything I want. Just you wait and see!
Dystonia and Me 