Don’t Miss Me Too Much!

Just a quick reminder that I won’t be posting tomorrow due to the small matter that is my honeymoon. However, if you don’t already, you’re definitely going to want to follow me on Instagram (@diaryofadisabledperson) because my feed will be straight fire all week!

Pain Pain, Go Away.

Unless you have been sleeping under a rock because house prices are soaring you will probably be aware of the recent opioid crisis in America where shocking statistics showed the true extent of opioid use in the USA, and the detrimental effect this was having on some people’s health. The backlash lead to doctors restricting patient’s access to opioids, particularly for long-term users. Almost immediately a huge debate sprung up between two communities; those who were concerned about the issues caused by long-term opioid use, and those with chronic pain who were now struggling to access painkillers, making day-to-day life significantly harder.

For pain relief I rely on medication traditionally prescribed as anti-depressants with two such tablets working together to boost the effects each other. On the worst days I have to rely on paracetamol and aspirin, despite aspirin aggravating the symptoms of my asthma, to control my pain levels. I was initially prescribed codeine for these occasions but as it transpires I am intolerant to codeine. This means that some days I just have to accept that the pain isn’t going to subside, which is a truly unpleasant realisation, but fortunately is not too regular an occurrence to cause me any great concern.

The one and only occasion on which I have used morphine, the mother of all opioids, was when I had a gall stone wedged in duct between the pancreas and small intestine blocking the passage so that no matter how hard my muscles contracted nothing was passing through. If this sounds like it might be painful I can assure you it was agony, especially having only had surgery the week before leaving the scar tissue fresh and tender, and it took a hefty dose of intravenous morphine to get the pain back under control. What I realised after taking the morphine was just how effective it was; my chronic pain which had been lurking in the background for several years was gone. Completely.

Suddenly I came to realise just how much of a relief it was for the pain to totally stop, even for a short time (everything they say about sudden realisations while high is true). Paracetamol might have dulled the incessant aching to a background inconvenience but the pain was still there. With the morphine, my head didn’t throb for the first time in years. My muscles weren’t permanently telling me they wanted to rest even as I was resting. It was quite the come-down.

If it is frustrating for me not to have access to the most effective painkillers for my condition out there, what it must be like for those who haven’t even got access to the less effective alternatives that I use is unthinkable. The chronic pain community are struggling to get access to any pain relief at all on a long-term basis, meaning they’re left to cope with horrendous conditions without any help. The side-effects and risks associated with long-term opioid use are well known and understood by the chronic pain community but given that they already have to live with chronic pain, the risk of side-effects in the future is worth it to be without pain now.

There are risks and America cannot continue on its current opioid usage and not expect to see the effects. However denying people the right to have a life worth living, a life not destroyed by debilitating pain, is equally horrific. Those with chronic pain are not asking for anything unreasonable; they are asking for life.

A Blessing From The Internet.

Social media is frequently lambasted as being anti-social, unwelcoming, and full of arrogant over-sharers who feel the need to share every last second of their lives with the internet (let’s not forget the self-important bloggers who take this to a whole new level). It’s been blamed for crimes and radicalisation, and is associated with spreading fake news and false evidence that backs up conspiracy theories such as the world being flat. I can assure you that the world isn’t flat because if it was, it would be a damn sight easier to navigate from a wheelchair.

All social media sites have faced their fair share of criticism, whether it be for selling personal data for profit, or altering photographs so significantly that the people in them look more like tall Barbie dolls than they do actual human beings. Perhaps the site that has been the subject of the most controversy though, is the one that allowed the president of the United States to discuss the ever-important issue of covfefe with the public. I am of course referring to Twitter.

I didn’t set up a Twitter account until February 2018, mainly because I had heard so many stories of horrendous trolling and abuse that I didn’t want to become embroiled in the supposed melee. However, I decided reaching out to Twitter would be a cheap and easy way of introducing more people to my way of thinking, so I set up an account while mentally preparing myself for an onslaught of far-right conservatives telling me I would burn in hell for the heinous act of finding Jennifer Lawrence attractive. I was pleasantly surprised.

What I found on Twitter was not a bucket-load of prejudice and malice, but a large, supportive community of likeminded individuals who all banded together to help those around them, even when living on opposite sides of the planet (another one for the flat-Earthers). A lot of wheelchair users and chronic illness sufferers soon climbed aboard the Diary of a Disabled Person train, the only train where you don’t have to pre-book a ramp several years in advance to then play an adrenalin-rush inducing gambling game of whether said ramp will even materialise. I also had people with other disabilities and learning difficulties follow me, as well as a large LGBTQ+ community, some medical professionals, a few academics, and somehow I seem to have attracted a reasonably large black community, which is uplifting considering I’m so white that my skin peels upon exposure to moderate sunlight.

It is undeniable that I have faced plenty of trolls, my particular favourite calling me an unemployed scrounger living off of other’s pity, clearly having never bothered to actually read my blog or refer to any of my social media history. He shut up pretty quickly after I had pointed out the fact that I was responding to his Tweet on my lunch break while sat in the office kitchen. I have also been told that disabled people should be left behind in the dust as a result of natural selection, obviously having failed to consider that many disabilities are developed later in life and are not genetic, nor understanding that humans evolved the trait of intelligence, not the ability to walk far.

However, when I compare the number of trolls I have encountered to all the positive support and encouragement I’ve received from everyone else, particularly during rough times, I’ve come to realise that social media is not the ugly dog-eat-dog situation some people would have you believe. It is, from personal experience at least, a useful tool for connecting with others and learning about our differences, and is a great platform to advocate for social change.

If you don’t already, please do follow me on Facebook and Instagram (@diaryofadisabledperson), and Twitter (@WheelsofSteer).