Tuesday, 16 February 2016

All that 'giving up' and doing things differently

Back in 2007 when I was diagnosed, I ended up on the PACE Trial, randomised onto the Cognitive Behavioural Therapy course of treatment. The therapist was a nice enough chap, except for his habit of asking me a question, me answering and then him keeping asking what was behind my answer.  He kept doing it despite us both being flummoxed, as, seriously, I'm just NOT that deep a thinker! There's nothing deeper in my emotions than my first response, I'm really very shallow!

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...
 Back in 2007 when I was moderately affected, I remember being outraged that they (the professionals) weren't going to fix me by helping me to do more. I already felt I'd given everything up I could - I'd reduced my socialising to virtually nothing but was still working not quite full time, then again I was still cycling, going to church, going shopping, yada yada yada, and had just been skiing (yeah I know. One run a day and a friend carried my skis for me!).

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!
 Then came 2013 when in a matter of weeks I could suddenly no longer walk even short distances, drive my car, climb stairs and on one awful morning, stand up long enough to get a glass of water from the tap and drink it.  (Fortunately I wasn't working at the time). Within days I was facing the stark choice, in energy terms (of what was available to me) of either eating or drinking or going to the loo. I had a duvet and cushion on the floor in every room and was crawling and having to lie down every metre.  On one memorable occasion, family came to see me, switched on the TV and, quite naturally, put the remote back by the TV. As one does. Except it took me a double bill of daytime TV to crawl to the TV 2 metres away to retrieve the remote, and back to the sofa.

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.

Historically, if I was a bit stressed, I'd go swimming or cycling. Then when the therapist made me give those up in 2007 (he was right but I'm still grumpy - though to be fair the last time I tried to go swimming, it took 3 hours and I only managed to walk there and lie down on the bench in the changing room for an hour then get the bus home, so it was a bit of a relief to be giving up trying to be super-duper-human about it!)

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!
However now I have a bit more stamina, I'm trying to stagger more than crawl. The skins are still there for bad days, but I found I was having trouble walking the distances between those places. So now my house is also littered with strategically placed dining and other chairs - near every doorway so that I can get across a room and know there's somewhere to sit down.

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!
Today I've finally managed to sort out one area of my life that's been annoying me hugely. Plants. I love them. But I'm not well enough to keep them alive.

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!
After a great deal of thought and consideration,  I've just acquired some fake plants for areas that I can't reach easily or don't remember to water - I saved up and went for high quality so that it didn't feel like real plants were being taken away, but something lovely was being added. (from www.Bloom.uk.com)
Newly acquired fake fern, for the bathroom, which has no window.
 This process of doing things differently takes months and years to do, and should be at one's own pace. Sometimes the brain just won't think of alternatives that are low maintenance and help me live my life more easily. Then inspiration strikes and months later, it happens.

My new fake plant for the windowsill. Won't matter if the curtains are closed for weeks on end, it won't die!
So, fellow sufferers - do you do this? Have you worked out ways to do things differently? or are you still walking around the full length of the sofa to get to the kitchen? mournfully watching your plants die? feeling grumpy that you can't do things you enjoy hugely without finding substitutes - yes you get less enjoyment, but also less grumpiness... I find it helps with the loss of a sense of purpose and value to my life.


  1. Really great piece, Lois. Certainly given me a way to think about things differently. I like the idea of going for the walk, and using pictures to remind you if you can't remember certain places.
    And books, I struggle there.
    You must keep writing. Kellie.

    1. Thank you Kellieanneb. I'm really grateful that it's had such a lovely response from people (mostly on Facebook).

      It's taken me a long time to write, and I couldn't have done it any sooner, as it's taken time for the horror of my worst (so far) to fade. And when I did write it, I felt that it was a rather self indulgent ramble to justify me spending £60 quid on fake plants. Because that's how it started, me wanting to explain about making adjustments to my house plants, then I realised I needed to talk about the why, what was behind that also.

  2. I can identify with your experience as you describe it. 'How can I do things differently?' is a good mantra. Thanks

  3. Absolutely awesome piece. You are AMAZING. Thank you for writing this xxx

  4. Really sorry to read how bad you are and how much you are having to adapt to greater disability Just a quick question, you seem to have deteriorated badly whilst on or after the PACE trial? Given the politics in the UK over PACE this is interesting. Am I reading this correctly and if so, any idea why?

    1. Re the PACE Trial: at the time I was devastated and the Therapist was puzzled as to WHY when we'd both put so much effort in, and I'd followed the CBT manual to the letter, I hadn't improved. I was very cross about it. And upset. He was so bothered he even mentioned it in one of his report letters to the GP. In physical terms, the PACE Trial made me give up virtually everything outside work, so in that sense, I wasn't 'recovered' BUT the act of doing that stopped the horrible grinding carapace of lead suiting that descended on me a few minutes after waking every morning. So, I didn't stabilise, I didn't manage to do any more, in fact, way less, but my symptoms improved. So it's a bit of a curate's egg! (parts of it were very good, parts of it were excellent is what he told the rectors wife, but in reality the whole of the egg was bad lol).

      Since the PACE Trial I have continued to use the CBT manual for the sleep hygiene, boom & bust avoidance, advice to stabilise and live within my energy envelope. This worked fine until 2102 ish when gynaecological issues tipped my body over the edge and in 2013 I was suddenly severely affected.

      The gynae issues were fixed in November 2013, recovering from that op and slow slow slow convalescence including learning the landscape of my new reality as to what I could and couldn't do (so says the social services finance lady as we are filling out the ESA/PIP form to claim benefits - Can you lift a box of tissues? Me - Erm, I don't know, let's try. Her - ah. no you can't. Me - in tears very sadly - no I can't can I) since then, it felt like the CBT principles weren't working any more.

      But they were. Just glacially slowly. They work only as tools to manage one's energy and use lifestyle to help control symptoms. They do not 'cure' one or address the underlying issues.

      I remain housebound. But can cruise around the house staggerng leaning on furniture for essentials like going to the loo and the fridge and letting the cat in. My fine motor skills are pants. But I can touchtype again now. (with mistakes) And my brain is working better. Though after typing this I shall be involuntarily falling asleep for a couple of hours regardless of my wishes. I can't do anything complicated with my brain. It's easier for me to communicate about things I know about already (like my own history) but I struggle with things that are new to me, like book or film characters or medical stuff. It's a mixed bag really.

      The controversy about the PACE Trial, for me is (a) they promised something that wasn't deliverable (b) are pretending they have delivered it when they haven't and (c) won't share the data which could help the community generally.

      My actual experience of the therapist and the staff at Kings and the attention they gave to trying to make me better whilst not making me worse. That it didn't work, the premise was erroneous and it didn't cure me, with hindsight, I'm sanguine about. The one thing the PACE Trial DID do, was prove that it's not cognitive/ psychological. Yes my muscles are deconditioned. BUT they don't respond the way they used to before I was ill. They don't recondition.

      I KNOW it's got a physical cause BECAUSE I was on the PACE Trial. I'm just waiting for biomedical to catch up and prove it. And find a way to fix me.

      I still use the CBT techniques. They have helped me manage my symptoms and helped with the grief/ loss of my life both when moderate and severe. I would recommend people try the PACE CBT or APT manuals to give them coping skills for the toolbox. But neither are in any way a CURE or TREATMENT. In the same way you wouldn't have CBT or APT to help people stay alive with diabetes or cancer or even to heal a broken leg. For me they are roadmaps for long term never ending convalescence - like a ground hog day convalescence, you never move forwards by much but at the same time, you don't lurch backwards either.

  5. Wonderful piece! After having M.E. for over 3 decades I have been through all these phases ...just now I've been listening to an audio book and it said "Dora walked in and said ..." and I had momentary panic: Dora?? Who's Dora????? I thought it was just me and senility was setting in ...
    I have 'Plonking Places' My bungalow is long from front to back - from lounge to conservatory and bedroom. Rather than walking the length to take something I have strategic plonking places wher I errrrrr, plonk things, ready for taking to next stage. An item can go from sofa arm to hall dresser to radiator shelf to dining table before it gets to conservatory and if there's a pile items will get dropped off along the way ...
    My whole life has become about adjusting and my new mantra is "Do what works !" xx