Pacing and priorities

The excuse I’ve been giving myself for not blogging is that I’m too busy doing things to write about them. And it’s true, the pace of change in my life at the moment is much faster than I’m used to and by the time I’ve processed one thing enough to write about it loads more has happened. So the moment passes and thoughts stay in my head instead of being written down. Which is fine, I have a lot to do to rehabilitate myself and try to create a more normal life at my improved (but still very impaired) level of energy. I’ve enjoyed being able to crack on with things that I need/want to do in addition to dealing with the basic necessities.

What has become apparent over the last couple of weeks though, is that I don’t cope very well when circumstances conspire against me and I have to deal with unexpected events. Nor am I very skilled at judging how much ongoing effort and attention will be required once I set something in motion. For example: Ordering a new pair of trousers is easy – I can do that lying on my bed. Trying them on, finding they are far too small, returning them to exchange for the next size up, trying them on, finding that they are ludicrously too big and returning them for refund uses up a considerable amount of time and energy. And the end result is that I still need new trousers, I’ve wasted a load of precious time and energy, and I’m miserable about being entirely the wrong shape for manufactured clothes…

Still, learning anything worthwhile involves making mistakes and, as I recovered from my latest set-back due to too many events outside my control colliding with my own over-optimism about how much I could achieve, it occurred to me that prioritising writing might slow me down enough to avoid overwhelm. On the other hand, it might depress me to observe too closely how slow my progress towards rehab actually is. Chronic illness hasn’t altered my fundamental preference for quick wins over slow and steady achievement. You can’t turn a hare into a tortoise by strapping a shell to its back.

My vague plan for the rest of the summer is to focus this month on enjoying having first my niece and then an old friend to stay. As I haven’t had house-guests since I moved here eight years ago the prospect is both exciting and scary. Still, I’m very glad I feel ready and willing to take such a big step outside my comfort zone AND in the month I usually find most trying health-wise. After that I’m hoping to spend August doing more art. I have almost completely neglected my creative life in favour of getting on with practical matters over the last few months, so I want to see what I can achieve if I make creativity my priority for a while.

I might write about it, I might not…

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Measuring progress with a strimmer

I’m aware that my health has improved since I had my Ferrinject treatment last year, but it’s really hard to quantify what “feeling better” means. While I make up my mind whether buying a Fitbit or similar device would be a good idea, I’ve got some less conventional ways to measure progress. Like strimming the back yard.

Two years ago I wrote this this blog post. I didn’t strim the yard again until Good Friday this year. I was bloody nervous about doing it, but it needed doing, I wanted it done and it seemed like as good a recovery milestone as any. Recovery isn’t just a physical process – you have to deal with some big fat fears on the way.

All went well and I drafted a post about my triumphal return to strimming. And didn’t publish it. Or write anything else until today. I’m not entirely sure why, but I think it was partly because I still didn’t trust that I’m getting better. And because so much is happening that I’m mostly just getting on with doing it rather than writing about it. And perhaps because recovery is a fucking scary process and I feel very vulnerable about it.

But, I strimmed the yard again on Monday and did quite a lot of domestic chores as well. And that seems worth recording. I didn’t feel great yesterday, but nowhere near as bad as I would have done after the same amount of activity pre-Ferrinject. Not that I’d have actually been able to do that many tasks in one day anyway!

After re-reading this prior to publishing I don’t feel it even begins to convey the issues that beginning to recover after a very long period of steadily declining health brings up. It is hugely challenging just experiencing it, let alone trying to explain what’s happening to anyone else. It’s too big and too complicated. Too personal and too uncertain. I’m experiencing what feel like huge changes for the better, but progress towards a conventional sense of wellness is very very slow.

Maybe it’s just too soon to try and make sense of it all.

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Early morning musings

I like it when I wake up slowly in the morning with no urgent need to get up. I pull out my earplugs and lie still, relaxed, listening to the birds, tuning into the weather. Maybe I stretch a little, then settle again to enjoy just being there poised between sleep and waking. Thoughts drift in and out of my mind; mostly prosaic (what day is it?) and sometimes profound.

Today I found myself thinking back to imagery I conjured up in my early days of psychotherapy, thirty-odd years ago. At the time I felt, for various reasons, utterly lost and broken. I visualised myself as a mess of runny jelly separated from the shell that had given me shape and support. Without my shell I was vulnerable, formless and scared witless.

At the time we played around with ideas of trying to firm up the jelly so it didn’t need a hard shell to protect it, but somehow it never really resolved into an image that felt completely satisfactory. I’d forgotten all about it until this morning when I suddenly had the revelation that we should have focused on making the shell resilient rather than toughening the jelly!

For some reason that thought cheered me no end. It’s not as if I’ve consciously given much, if any, thought to an unresolved piece of imagery during the last thirty years, but it was still an “Ah ha!” moment, as if some small piece of mental jigsaw had finally slotted into place. It felt profound, though after pondering it on and off throughout the day I’m not sure why.

Is it a sign confirming that I’m now reasonably emotionally resilient? Or is it a nudge to look at some other issue in a different way? A reminder that you need both container and contents to make a whole? Or just one of those random pieces of mental flotsam that washes up in a half-awake mind?

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Convalescence is work

When I had my last spell of better energy at the beginning of the year I was wildly over-optimistic about what I could achieve. I increased my activity level too much and too fast, leading to a horrible crash that lasted most of February. It was a reminder that I need to find a steadier, more sustainable pace of recovery.

This time round I’ve been more realistic about my capabilities, so when my hot flushes resumed last week to wreak havoc with my sleep, I was better prepared for the necessary slow-down. I’m not happy about the situation, but a slow-down is better than a full-stop.

A couple of articles have really helped me cope with the set-back. First, ME/CFS Self-help Guru’s post about the challenges of managing improvement and then Toni Bernhard’s article How Chronic Pain and Illness Fan the Flames of Uncertainty in Psychology Today. Thank you both for your wise words.

The thought that’s been in my mind lately is that “convalescence is work”. In the digital age we view so many things in binary terms. When applied to health it’s tempting, but too simplistic, to see yourself as either well or ill. This is especially true for chronic conditions which fluctuate and are riven with uncertainty.

In my mind “wellness” pretty much means “able to earn my living by working at a job” and illness means being unable to work. So every time I feel an improvement in my health I start thinking about finding ways to earn my living. Which is pretty stupid really when I still can’t reliably manage the business of day-to-day living!

So, for now, I have to think of convalescence as my work. The pay is uncertain, as is the duration and nature of the tasks involved, but it’s the most important thing for me to be focused on right now. I need to work out how to convalesce effectively in a constantly changing and somewhat insecure environment.

I’ve started making a list of things I need to be able to do reliably and without adverse effects on my health before I even think about work in terms of job, career, self employment etc. Although in some ways it’s a dispiriting reminder of how far I have to go, I hope it will be useful as a benchmark for measuring my progress.

And because everyone needs regular time off from work to refresh mind and spirit, I’ll be including leisure activities on my list. On Tuesday I spent a very happy hour watching the tide come in on Goring beach.

wave splash

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A turn for the better

A happy conjunction of better weather, a respite from hot flushes and a foul bout of IBS that made me reform my diet (again) has perked me up no end over the last two or three weeks. Looking back a month to my plea for more, I feel that I have been granted it, though not exactly in the way that I envisaged.

I’ve done very little of my creative writing and certainly haven’t been doing any daily creative exercises, but I have been gardening! As much and as often as I can, which has turned out to be quite a lot thanks to the fact that I’ve been getting a reasonable amount of fairly good quality sleep. It has been wonderful to see tangible progress in the garden and to feel the benefits of outdoor exercise in spring sunshine.

Even the fact that it’s taken me a good two weeks to do what I would once have done in a weekend hasn’t dampened my pleasure in my achievements. They may be small by “normal” standards, but they are big in my current state of health. I’m so grateful for the circumstances that have made my feel that me plea for more was granted. My weight has gone down a bit too, so I have joy in less as well!

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Joan’s hyacinths

Every autumn my friend and former neighbour Joan used to plant numerous pots and bowls with hyacinth bulbs to give as Christmas gifts. After the flowers faded I’d re-plant mine in the garden where they reappear every year. Joan died at the age of 81 on 16th February this year and the sweetly scented flowers are a happy reminder of the times we spent together.

One of the great joys of gardening is sharing things we’ve grown with other people. I love propagating cuttings, saving seeds and finding new homes for the surplus. I also love the memories attached to the many plants in my garden that were given to me. I hope that when I too am dead and gone my friends will look at plants I gave them and remember me fondly.

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Spring fever

The weather has changed for the better over the last few days and my priorities have changed too. I want to be outside as much as possible, doing a little work in the garden, chatting to my neighbours over the fence, sitting watching the birds and enjoying going shopping without wearing a coat.

The air smells wonderful, full of sweet freshness. Everywhere I look there are early flowers and fresh green shoots. Buds are beginning to break, the grass is growing and an occasional bumble bee buzzes by. The birdsong is cheerful, the evenings lighter and life feels full of promise.

I feel as though I’m unfolding again, the gloom that enveloped me in February has sloughed off and I’m making wildly optimistic plans for the garden. Writing no longer seems important. I refuse to feel guilty about slacking off so soon after I got going with it again. Things change and that’s OK.

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