Some words/phrases/acronyms I’ve used that people might not have heard before. If I’ve omitted anything that needs an explanation, please get in touch!
Anti-Tippers – These are a set of bars with tiny castors on the end that sit at the back of the chair to reduce the risk of the chair tipping backwards and slipping out from underneath you 😱 These allow a user that hasn’t got the ability to balance on the back wheels to lift their front castors safely without tipping over. They’re fixed at a height that allows you to mount kerbs safely etc.
Banana Board – A curved transfer board that I use to transfer from my chair to seats/my car. Yes, it bothers me that it’s not yellow 😆
The Bastards that make the lives of the sick and disabled a complete misery. The Department of Work and Pensions who have various agencies dealing with different benefits, most of whom won’t communicate with each other, meaning we have to suffer repeated assessments and invasions of our lives and privacy. (Bitter, moi?)
EDS – Ehlers Danlos Syndrome, a condition some friends of mine have that is a connective tissue disorder causing a wide range of symptoms, but is most commonly known as Hypermobility Syndrome.
Epstein Barr – This is the virus that I picked up last year, triggering many of the problems I have now. It’s most commonly known to cause Glandular Fever, but can cause many other symptoms. It can also trigger ME/CFS which is what I have now.
Fischer Sticks – The sticks I used to walk with, they have moulded ergonomic handles to spread the weight evenly across the palms.
FND – Functional Neurological Disorder. I was diagnosed with this in 2015, but started getting symptoms in 2012. It causes a wide variety of neurological motor & sensory symptoms including muscle weakness, numbness, paralysis, tremors, memory and cognitive problems and many more. It is best described with the computer analogy; there are no hardware faults, but the software is very glitchy and the messages just aren’t getting through.
Little Cripples’ Room – My phrase for the toilet/bathroom. A play on what I used to call it – the Little Girls’ Room.
ME/CFS – ME is Myalgic Encephalomyelitis, colloquially known as Chronic Fatigue Syndrome (CFS). It’s most common symptom is extreme exhaustion, but it also includes many other symptoms such as pain, muscle weakness and cognitive function problems. It can also include “recurrences of the original systemic illness” so in my case, I suffer repeated episodes of the illness caused by the Epstein Barr virus, even though the virus has long gone. To put it crudely, the virus has left an imprint of itself on my brain, and it doesn’t take much to trigger an episode with me.
Memory Loss Manor – My nickname for the Sheltered Housing accommodation I currently live in. It’s a complex for over 65’s, but with my cognitive impairment I have to take the Memory Loss label as well! 😂
PIP – Personal Independence Payment, the replacement benefit for DLA (Disability Living Allowance). This is a benefit that is not means tested, so anyone over 16/under 65 is entitled to claim it, whether they work or not. It’s a controversial benefit as the DWP are maliciously trying to reduce the number of people entitled to the benefit, so are denying people their claims in the first instance, and then spending more than they are saving on Mandatory Reconsiderations and Tribunals to give it them back. 🙄
RADAR Key – A Universal key that unlocks all disabled toilets fitted with a RADAR lock. This is a national scheme, and the keys are issued or sold to those eligible, (although not just those with physical impairments – people with bladder/bowel conditions are entitled to them as well) by OT’s, councils & shopmobility etc. The keys aren’t actually radar as many people are disappointed to find, RADAR is an acronym for Royal Association of Disability and Rehabilitation (now part of Disability Rights UK), who first came up with the idea.
Reablement – This is a scheme intended to help people recently injured, disabled or discharged from hospital to learn to live more independently.
Social Model – This is the idea that disability comes from society and its approach to disabled people. If society and the environment around us were fully equipped and accessible, then in theory we would no longer be disabled as we would be able to live and do everything that our able-bodied peers do. I support this model, as I am learning that it’s only the barriers that I come across that hinder me.
Spoonie/Spoon Theory – The Spoon Theory was conceived by Christine Miserandino as a way of explaining how those of us with chronic illness manage our fatigue. The idea goes that your ‘spoons’ are your units of energy, and whilst a relatively healthy/able-bodied person might have a seemingly endless amount of spoons, we only have a very limited number so we have to carefully pick what we spent them on. Shower is 3 spoons, cooking is 5 but we want to go to the cinema tonight which will take 8, so we have to pick one of the others as we can’t do it all in one day. A Spoonie is the name of a person who suffers with chronic illness/fatigue and subscribes to the theory, and there’s quite a community of us!