Have you ever wondered why tea tastes so much better out of bone china? As a youngster I could never understand why my grandma and great aunt always insisted on a teacup and saucer for their cuppa, but as I get older I start to appreciate these things. I’m not saying that I use a teacup – there is no way that I am ladylike enough to manage one, crook my little finger and balance a saucer for that. The EDS shaky hands make it hard enough to cope with a mug, believe me! But I do enjoy drinking from a bone china mug these days.
What happened to those teacups and saucers though? How many of us have inherited dinner services and tea sets from loved ones that never see the light of day? Afternoon tea is becoming trendy here in the UK and there are various tea and coffee shops that serve delights upon and in a mismatch of tea plates, cups and saucers.
However my grandmother’s bone china tea cups came in very useful earlier this year, and not for drinking from! The lovely girl made a sculpture for her final piece of art work in the summer and you guessed it, one side is adorned with smashed china to fit with the subject title “Fragments”. I hope that my relatives are looking down with approval!
Round and round, up and down. I seem to be moving along in my life but never getting anywhere! When I look a bit closer I am travelling on a merry go round – round and round, up and down, a never ending circle that just doesn’t reach my final destination. Others around me are on the travelator – the kind that you get in the airports or new supermarkets – and seem able to see their destination and even to jump on and off en route.
But my journey continues round and round, up and down as the ride continues relentlessly day in and day out. When I look down I realise that I am not even seated on a brightly coloured galloping horse decorated in golds and silvers like the others accompanying me – yes there are others who seem to be at a stage in their journeys of being on a hamster wheel, unable to reach a destination. Instead I am seated on a zebra – a stunning animal admittedly, and not so dissimilar to the horses around it in shape and size. He has a mane, a tail, hooves and he can gallop at great speed. To hear him coming you might mistake my trusty steed for a horse – but he is not, he has stripes and he is a zebra.
My companion on my life journey is different and I am unable to jump off the merry go round that he is firmly bolted to. I raise my hand at fellow travellers passing by and the others joining me on my ride….every so often another zebra joins us and we continue our journey together. Up and down, round and round.
The Zebra has been adopted by the Ehlers Danlos Syndrome community as traditionally medical student have been taught throughout training that “when you hear hooves, think horses, not zebras” – think of the obvious conditions first, rather than the exotic and rare. Thus in medical circles, the term “zebra” is used to describe a rare disease or condition and we EDSers are referred to as zebras!
The long awaited exam results finally arrived for many this week. There have been tears of joy and despair up and down the country – for some the exultation of achieving that 6th form place in the desired school or college, for others the disappointment of being unable to move on with friends and the upset of starting somewhere different.
This morning the post brought hand written envelopes to a particular group of 16 year olds. For most the plop of this missive onto the mat was unexpected, a letter that was completely forgotten. At the beginning of their GCSE studies, the school had added Mindfulness to the timetable – a concept completely lost on many of the 15 year olds particularly the sitting quietly and not letting their minds wander. In an effort to give them some skills to deal with the stresses that might lie ahead during the 2 year course, they were encouraged to learn about emotions, feelings and how to help themselves.
During one session, they were told to sit back and take notice of their current thoughts and feelings – and then to a write a letter to their future 16 year old self to be received just after exam results. I wonder how many of them where accurate in their predictions about their future selves…..not their results, but their mindset, organisation, preparation and plans for the future? If only I had written a letter to my future middle aged self……
This post is part of Linda G Hill’s Stream of Consciousness and was written on Saturday (I promise) with the prompt “notice” – to find out more visit Linda and more SoCS posts here
There should be a Saturday on that title, but I am a day late which just about sums it up!! But I had to join in this week, no matter how late, as the prompt was clearly written just for me. I spotted Linda’s Friday prompt and it seemed to call out to me…..”Claire, Claire this is for you”, but the very thing relating to the prompt has been the same thing stopping me from typing, from letting my brain and my body work together, cohesively.
The prompt “Your Friday prompt for Stream of Consciousness Saturday is “-ic or -ical.” Find a word that uses the suffix “-ic” or “-ical.” Bonus points if you use both. Have fun!”
How many times do I use the suffix “ic” in the course of my blogging? Just about every post. Let me see – chronIC pain, chronIC illness, chronIC fatigue, chronIC bloggers, chronIC community. But when does pain or illness become CHRONIC? In fact what is it before this?
The definition of chronic is “persisting for a long time or constantly recurring” – so how long is a long time? When does pain cease to be acute and cross into the chronic stage? How does a chronic illness earn that tag?
In a previous life, I was taught that a general rule is that when an illness has persisted constantly for 3 months or more, it can be thought to be chronic. The illness may have slowly crept up on the individual, or gradually worsened increasing symptoms and disability. With chronic pain, the pain itself often takes over and actually becomes the “illness” as the individual lives with it day in and day out. Acute illness and pain is sudden and dramatic, but usually short lived in contrast to the never ending spiral of chronic conditions.
My own chronic dislocations, chronic pain and chronic brain fog have seen what can only be described as some comical situations over the last 48 hours (yes got the ical in too!!)……having literally gone down a rabbit hole in true Alice style, I shot out of my wheelchair and dislocated the shoulder(again…groan) and the opposite ankle. In my bedroom that evening my ever helpful kids were taking a long time coming, so yours truly decided that hopping on the good leg was the obvious solution to get to the top of the stairs. One failure of knee joint later had the young engineer, lovely girl and yours truly all collapsed in a rather strange heap……but why was I crying with laughter??? Strange things happen with these chronic problems!! Got to laugh though….
But did you know that Chronic can mean something else entirely? I discovered quite by chance that it is the name given to a particular strain of cannabis……ironic or fitting I wonder, with the increased debate over the use of cannabis and CBD (cannabidiol – THC psychoactive element removed) for chronic pain and illness?
This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines, hashimoto's and more. But in between all the chronic illnesses, I have a life...kind of. -Rachel Bob