Anyway, one rather more useful repetition of his was - How can you do things differently?
To continue having interests in life, but that don't eat so much energy (mental and physical).
It's a small question. But a very useful one, whether you're mild, moderate or severely affected - because everyone who has this illness, they have to 'give things up'. It can be a 'little' thing like walking instead of taking the bus, going out and socialising less often, or a 'big' thing like being able to wash themselves or go to the loo, have a shower or even eat & drink.
Often it's a relentless succession of giving up. Within a matter of days, weeks, months or years, one ends up having 'given up' so many things that it feels like there's nothing left.
|Belleville Rendezvous animation - can't cycle? watch cycling instead...|
Over the course of the treatment I ended up working half to one third hours, and everything else, including cooking, pretty much was stopped dead. I really did feel desolately lost as though me, I, myself, as a thing, a concrete solid presence, was being chipped away. I couldn't imagine that there was anything left to give up, it made me sad, fearful and griefsticken. I used to sit in the living room and stroke my pushbike, tears leaking from my eyes, so sad that I couldn't just jump on and go for a short ride, and angry at the 'waste' of money spent on things I could no longer use. My worst fear was this 'giving up' would never end, leaving me unable to do anything, stuck in a wheelchair.
With the therapist's help, I found substitutions - ways to do things differently - watching pro-cycling like the Tour de France on the TV instead of actually cycling, listening to sermons online instead of going to church, doing tapestry cushions with pre made patterns instead of my self-designed textiles. By the end of the year, I had mostly successfully cut my coat according to my cloth and was almost stabilised (that didn't happen until I actually wasn't able to work due to the recession). A somewhat unhappy state of affairs, which lasted a few years.
|Such a simple thing. Until you can't do it!|
I felt, yet again, like there wasn't anything left to give up. I wasn't even managing to exist by myself, family had to come and sort out food and water for me to survive - leaving glasses of water in different rooms for me and plated up food in the fridge. My sister took the cat to her house, and my dad put the microwave on the floor for me because I couldn't use it even on the counter top. My skin, bones, muscles all were in agony and I had to have the curtains shut. I didn't want to kill myself, but there was a sudden realisation that I had left it too late, and wouldn't be able to if I'd wanted. It was a time of genuine terror, grief and deep despair.
That's my worst. And yet, there are others with this illness even more affected than that, who have periods of paralysis, are peg fed, have catheters, can't transfer to a commode by themselves, get no symptom relief no matter the cocktail of drugs, amongst all sorts of other difficulties.
In short, as fellow meeps will know, this illness strips away everything we surround ourselves with, our lives and our existence, our idea of ourselves. And it's really bloody tough to cope with.
|Drugs drugs and more drugs|
One particularly difficult area is how one distracts oneself from the horrible reality of always being ill and having no viable expectation of controlling how ill we are - it fluctuates.
The only solution I've found that works - that therapist's mantra - to DO THINGS DIFFERENTLY.
The more restricted you are, the harder it is to do things differently. So ideas that worked when I was moderate don't work when you're severe, for example watching the Tour de France? forget it. Takes too long and was too much excitement for my eyes and brain. But the basic principles still apply, albeit on a more restrictive level.
So post CBT therapy, I lost myself in books instead. Amazing how you can be absorbed into the story and forget your own difficulties. Humans need to be able to switch off and distract themselves.
When the landslide of severe symptoms hit me in 2013? oof! I was devastated. I found I couldn't hold a book, I couldn't have the book on the floor and hold myself over to read it, and even if I found a way to have the book steady with me lying down, I couldn't concentrate on the actual reading.
So I turned to audiobooks. Except that's quite hard as well. I listened to the initial chapters over and over again until I recognised the main characters and the rhythm of the narrator's voice. I found it hard to follow a storyline.
So I ended up listening to books I knew quite well already. Then to young adult fiction, then to juvenile fiction. Frankly I'd have been grateful if The Hungry Caterpillar had been an audio book some days!
On the bad days (as it fluctuates) I couldn't even do that.
So in my brain I tried to go for a walk. Somewhere I knew that wasn't very far, like the postbox round the corner, but I couldn't imagine further than out of the living room, down the stairs and up the path and along the road. I couldn't remember what came next.
So I imagined a place I'd been lots of times, with a bench. A static place, where I was just sitting. Like the Lion statue at the British Museum. Or the woodland near where I grew up. Or the ancient hill fort on top of the field the ponies lived in. Or the viewpoint at Greenwich Park. Or the Deer Park at Blackheath. I found pictures of them on the internet to remind me on days when I knew where I wanted to pretend to be, but couldn't visualise it.
Then some days all I could do was be pleased my body kept breathing without any input from me. I just lay there and listened to it happen. (I think this is a 'lite' version of mindfulness. I might be wrong.)
In that way, each time I had to 'drop down' in an achievement level, I found an alternative. A different way to achieve the an approximate feeling of being or doing that I'd had before I was ill. A way to be distracted and feel human. To feel like I was myself.
|My favourite place to pretend to be - the lion at the British Museum|
Doing things differently isn't just mental, it's physical as well. It's about making it easier to eke out the limited energy that you hope you have at any particular time.
At my worst, it was easier to crawl than stagger around the house, because I needed to lie down for a rest every metre or so. To make it more comfortable I relocated some sheepskins from the back of the sofa to the floor to give me a bit of cushioning at strategic locations - in this house there's one at the top of the stairs, and one at the bottom of the stairs. Together with a cushion as a pillow. To an outsider they look like randomly placed area rugs, to me, they are staging posts on my way to the loo, kitchen, sofa, bed & bathroom.
|Mine are a LOT further apart!|
It's not very different to a strategy the therapist and I worked out back when I was moderately affected and still walked considerable distances - merely on a much smaller scale. Back then I started walking along bus routes, because there were benches at each stop. And eventually came across a Flipstick which is like a shooting stick for urbanites - it is essentially your own personal bench wherever you go.
Similarly, when I suddenly became severe, I realised that my house was set up for someone who could move around, lift things, had the energy to use things and put them away. So over the last few years I've been working on making the house easier for me and the carers to use.
|Dead Plant from the web. My latest disaster was one of those that has orange balls on it. Once curtains were put up, I forgot it was on the windowsill as they were always closed. Oops!|
This christmas I realised I wasn't watering my plants and they were suffering. Then curtains were installed, and stayed closed. Plants were forgotten. There was neglect... and internment in the bin.
So I got smaller bottles of water, and more of them, which are kept filled up instead of the watering can. The plants were moved to places I could reach more easily without having to stretch or standup to water them.
|This is from the web. But one of my successful alive plants is a mix of fern and pitcher plant - it likes living in a pond of water, so just needs topping up and is impossible to overwater. Hurrah!|
|Newly acquired fake fern, for the bathroom, which has no window.|
|My new fake plant for the windowsill. Won't matter if the curtains are closed for weeks on end, it won't die!|