Journeys In Words And On Wheels
Travels, Challenges and Writings from my Wheelchair
So back in November I spotted a Facebook post which mentioned that CRIPtic Arts in London were looking for writers for a project named the Crip Monologues.
Writers were invited to pitch ideas at the CRIPtic team and from those pitches 12 would be chosen to develop a script for a 10-15 minute monologue, with the subject being scrutiny; people who are stared at when they enter a room or go shopping; people who look different to the “norm”.
I was one of the 12 commissioned, which was obviously exciting for me, and I quickly had to learn how to write a script, having never done this previously. The commission for this piece was paid into my bank a few days after completion and that then made me officially a paid writer. For the first time in my life someone saw value in my writing! This has reawakened the buzz inside of me to get a book finished and out there. I believe the Crip Monologues will be performed this year (2024.)
Meet the writers:
The Highs of Motivation
We’ve all felt it — that surge of energy when motivation courses through our veins. It’s the fuel that powers us to tackle our goals, the wind in our sails pushing us towards success. On these days, we’re unstoppable, checking off tasks with a vigour that seems to come from a boundless well.
The Lows of Demotivation
But then, there are the other days. The odd ones where that well of motivation seems to have dried up overnight. We wake up feeling like we’re wading through treacle, every task an insurmountable mountain. It’s normal, yet it can make us feel isolated, as if we’re the only ones struggling while the rest of the world charges ahead.
Understanding the Cycle
It’s crucial to recognise that motivation isn’t constant; it’s a cycle. Like the ocean’s tides, it ebbs and flows. Accepting this can be liberating. It means that feeling down or unmotivated isn’t a failure — it’s part of the human experience.
Strategies for the Low Days
So, what can we do when motivation is scarce? Here are a few strategies:
Embracing the Journey
Motivation is not just about the highs; it’s about learning to navigate the lows. It’s about understanding that our worth isn’t tied to our productivity on any given day. So, on those odd days when you’re feeling down, remember that the tide will turn. The key is to ride the wave, not fight against it.
Introduction
Along with alexithymia, my autism diagnosis also made me aware of my lack of interoception. This has been a lifelong issue for me.
What is Interoception?
Interoception is our ability to perceive and interpret signals coming from within our own bodies. It’s an internal sense that informs us about the physiological state of our body, such as hunger, thirst, temperature, and internal pain. This sense can be both conscious and subconscious, and it plays a crucial role in maintaining homeostasis and facilitating self-awareness.
The Causes of Interoceptive Dysregulation
Interoceptive dysregulation can arise from a variety of sources. It’s often associated with mental health conditions like anxiety, depression, panic disorder, anorexia nervosa, bulimia nervosa, PTSD, OCD, ADHD, alexithymia, somatic symptom disorder, and illness anxiety disorder. Misrepresentations of internal states or a disconnect between the body’s signals and the brain’s interpretation of those signals are suggested to underlie these conditions.
Treatments and Techniques for Managing Interoception
Several approaches exist to enhance interoceptive awareness and regulation:
Mindfulness and meditation: These practices can enhance one’s awareness of bodily sensations and help regulate emotional responses.
Talking therapies: Cognitive-behavioural therapy (CBT) and other psychotherapies can assist individuals in better understanding and responding to their interoceptive signals.
Interoceptive training: Specific exercises that focus on recognising and responding to internal bodily sensations can be beneficial.
Aligning dimensions of interoceptive experience (Adie): A novel therapy that involves interoceptive heartbeat training to align interoceptive experience.
Conclusion
Interoception is a vital but often overlooked aspect of our sensory experience. By understanding and managing our interoceptive signals, we can improve our emotional regulation and overall mental well-being.
Introduction
In my autism diagnosis journey, and after several sessions meeting other autistic people through the National Autistic Society for Scotland in their Embrace Autism group sessions, I have come to realise that I can’t, and have never been able, to pinpoint what I’m feeling (emotionally) at any given time. This is a condition linked to autism that is named Alexithymia.
What is Alexithymia?
Alexithymia, often described as “emotional blindness,” is a condition characterised by difficulty in identifying, expressing, and describing emotions. It’s not just about being less emotional; it’s about having a hard time understanding what you’re feeling at any given moment. People with alexithymia might find themselves confused when asked how they feel, or they may struggle to recognise the emotions of others.
The Roots of Alexithymia
Although not fully understood, the causes of alexithymia could be influenced by genetics, brain structure, and early life experiences. Some studies suggest it could be related to damage in the insula, a part of the brain involved in empathy and emotional awareness. It’s also associated with various mental health conditions, including depression, anxiety, and autism spectrum disorders.
Living with Alexithymia
For those with alexithymia, everyday interactions can be challenging. They might appear distant or uninterested because they don’t express emotions in a typical way. This can lead to misunderstandings in personal relationships and difficulties in social situations.
While there’s no specific treatment for alexithymia, therapy can help improve emotional awareness and expression. Techniques like cognitive-behavioural therapy (CBT) and mindfulness practices can assist individuals in better understanding their own emotions and the emotions of others.
Conclusion
Alexithymia is a complex condition that affects how people perceive and express emotions. By recognising its presence and understanding its implications, we can create more supportive environments for those who experience the world differently.
This post, from the blog diary of a disabled person, explains what happens when people use spaces designed for disabled people.
Urinary catheters are flexible tubes that are used to drain the bladder and collect urine in a drainage bag or a valve. They can be inserted through the urethra (the tube that carries urine out of the body) or through a small opening in the lower abdomen (the tummy). Urinary catheters are usually inserted by doctors or nurses in hospital or in the community.
There are different types of urinary catheters, depending on how long they are needed and how they are inserted. The main types are:
I have a Supra-Pubic Catheter. This is a tube that is inserted into a hole in my lower abdomen, just beneath my belly button, and directly into my bladder. I had the surgery for this in May 2018 after approximately 10 years of self-catheterising, which is inserting a tube into the urethra and into the bladder several times per day in order to drain the bladder. My hands got too unsteady to do this without causing significant pain and trauma. I made the decision to have surgery for an SPC and I’ve never looked back. Every 8 weeks a district nurse calls by my home to change the catheter.
Urinary catheters can have various benefits for people who have difficulty peeing naturally. They can:
However, urinary catheters can also have some risks and challenges, such as:
To reduce the risks and challenges of using urinary catheters, you should follow some general advice:
Urinary catheters are flexible tubes that are used to drain the bladder and collect urine in a drainage bag or a valve. They can be inserted through the urethra or through a small opening in the lower abdomen. There are different types of urinary catheters, depending on how long they are needed and how they are inserted. Urinary catheters can have various benefits for people who have difficulty peeing naturally, but they can also have some risks and challenges. To reduce these, you should choose the right type of catheter for your needs and preferences, keep your catheter clean and well-maintained, drink plenty of fluids, and seek support if you need it.
Journeys In Words And On Wheels 
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