Self-improvement without physical movement

Progress has been slow on the physical front. I’m still pretty much tethered to the sofa, apart from a short walk. I seem to spend a few weeks building myself up again, then lose as much as I’d gained almost overnight. Still, each time I notice what it was I did wrong (last time: sitting on the patio for ten minutes in the evening sunshine) and on that basis hopefully I will be able to go on a longer winning streak soon.

In the meantime. I’ve talked before about how I feel others moving on and passing me by, as I’m stuck here both literally and figuratively. And a long while back I talked about trying to learn new things, but that was when I had a higher level of functionality than I do now. So I started wondering: how can I use my time to develop myself, in this reduced state, so that I can feel that I’m moving on as well?

Podcasts have long been important for me, as earlier in the day, TV and reading are too much for me to handle. The great thing about podcasts is that you can either listen to them actively or you can turn them right down, let them wash over you and just catch bits here and there. So I’ve added in a bit of home learning to my podcast repertoire.

Specifically, I’ve started listening to some French podcasts. I have a headstart here as I have A level French, but it’s more than a little rusty. I’m catching up with a bit of back-to-basics instruction (using Coffee Break French, which has a ton of free lessons) and combining that with this ace concept called Slow News In French, where each week they read and discuss the news … in French … but nice and slowly, so that it’s easier for non native speakers to understand.

And my French is coming back! Even with my poor attention span, even though I’m not listening properly half the time: that’s the beauty of languages, they go in anyway.

Here’s why this is so good: usually when I think about how long I’ve been sick, and especially how long I’ve been cared for by my parents, I feel under some kind of time pressure. I should really be better in time for the spring – or the summer – or the autumn; I shouldn’t leave my flat, my garden and my car alone for too long; surely, at some point, my mum is going to need a holiday; and really, at the end of it, how many years am I going to lose to this?

It’s hard to take that pressure off completely, no matter how much I try. But if I keep doing these podcasts, the longer I’m sick, the more I’ll learn. Once my French is back up there, I might start Spanish. After that, sign language maybe. And if I still have time after that, I think Japanese or Chinese, for a real challenge. (If anyone with ME/CFS is reading this and wondering how on earth my memory is going to cope with this, I think the answer is very badly, but you can’t knock me for trying!) So the longer I stay on the sofa, the more languages I’ll know. It’s something at least.

Plus, when I’m bored of the TV, I google something random on my phone. I’ve learned how the US political system works. I’ve got the geography of the Israeli/Palestinian conflict clearer in my mind. And the other day, my mum and I looked into the history of how time – well, not time, but our measurement of time – was developed. It occurred to me that years, (lunar) months and days are determined by the solar system; but minutes, hours and seconds might not be. Or were they? I wasn’t sure.

So we looked into it and I was right the first time – they aren’t. We use divisions of 60 for minutes and seconds because the Babylonians liked the number 60 (which, I learned, is actually a very talented number – it’s the lowest number divisible by all of the numbers 1-6, and also by 10, 20, 15 and 30) … and we use 12 for hours in the day because the Egyptians had a thing for 12.

But these measurements only became fully stable once we developed common mechanical systems for doing so, in late medieval times. Isn’t that interesting? So before we had clockwork, we did count ‘hours’ and, of course, measure out nights and days. But, because everything was dependent on the movement of the earth around the sun, daylight hours were shorter in the winter and longer in the summer! Blows your mind, doesn’t it. (Although, when exact time really mattered for religious reasons, Egyptian priests would use water clocks.)

Oh, and if that blew my mind, this next thing was more of a gentle puff of wind. Sundials aren’t accurate most of the time; only at the equinox. How I thought they worked otherwise, I don’t know, but who knew?!

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What is ME? A special post for ME awareness week

I.

ME is feeling your body overpowered by an exhaustion so great that it is literally disabling.

It’s thinking I can push through this, then realising that your stubbornness has left you bedbound.

It’s knowing that the harder you struggle to try to escape, the stronger the grip it takes on you.

II.

ME is losing every aspect of your busy professional, social, romantic and sporting life, and seeing it reduced to nothing but a bed or a sofa and four small walls.

It’s hearing the dangerous helicopter whirr of blood in your ears from climbing the stairs.

It’s relying on your carer for every need, every day, until the words “please” and “thank you” lose all meaning.

It’s the pure physical boredom of having to lie in the same place hour after hour after day.

III.

ME is not being able to be in the same room as your beautiful niece and nephew because their energy and life and movement are just too much for you.

It’s explaining to a friend that they can’t visit, as it would knock you out, and knowing they think you must be “just depressed”.

It’s doing something that you managed OK yesterday, but today it puts you on your back for a week.

It’s gritting your teeth and saying “thank you” when someone tells you to stay positive, when they have no idea what they’re asking.

IV.

ME is that incredible rush when, for just an hour or two on a very rare day, your body feels normal and light and strong.

It’s the dull ache and disappointment when you crash all over again.

It’s weeks of painful progress undone by one day too much.

It’s going right back to the beginning, over and over again.

V.

ME is watching weeks become months become years, and not knowing what to do with your hopes and dreams, because if you let them go you may be broken, but if you cling on to them they may break you.

ME is tomorrow and tomorrow and tomorrow, creeping in this petty pace from day to day. It is, truly, a tale told by an idiot.

It’s secretly wishing you had cancer instead and would either die, or not die; right now, you don’t really mind which.

VI.

ME is losing your identity and realising that you’re still here‏.

It’s slowly, painstakingly building a new life for yourself.

It’s treasuring fresh air and blue skies.

It’s the strange relief found in connecting with other people who suffer like you.

It’s realising you were stronger than you ever knew.

ME is learning to appreciate all the terrible, precious and tiny beauty of the world.

It’s finding out how much some people love you and that they would do pretty much anything for you.

It’s the empathy for others in pain that you never knew you were lacking.

It’s feeling a wellspring of love, or kindness, or grace, whatever you want to call it, for all of the people you’ve ever known and the ones you haven’t too.

It is finally reaching that alchemy in the mind which can transform darkness into light, and find – in the stillness – the dancing.

Bursting the bubble

I’ve been having a bad few weeks. I must have done a few things ‘wrong’ all at the same time, and much like last time, once things started slipping, I found it really hard to get a foothold again. I still believe that if only I can steady things out I can build them back up again, and I think they are just about steady now. But in the meantime, it’s hard to be back on the sofa all day every day all over again. Really hard.

For a start, it’s boring – not just mentally boring but physically boring, like when you are ten hours into a long flight and you feel desperate to get up and run around. Instead of cabin fever, I’ve got bed fever. Plus, it’s really, really uncomfortable; plus, it’s frustrating. I’m so weak right now that all I need to set myself back is to do something so small, so inconsequential (for example: trying to make myself a piece of bread and jam) – and I’m crashing again.

Sometimes I just want it all to stop. Stop the ride and let me get off, please.

However.

In the midst of all of this difficulty, something very cool happened.

A bit of backstory: before I got sick, I wrote a novel. I was doing it in my spare time as back then I had a day job, of course, and it took maybe eighteen months to complete. Since it’s been finished I’ve been sick pretty much the whole time, so apart from sending it to a few agents way back when, it’s just been sitting on my C drive.

Until now.

I saw on twitter a link to a fiction prize for first time female writers. You just had to submit the first three chapters and a synopsis – standard stuff which, again, was already sitting on my C drive. I submitted a couple of months ago, then pretty much forgot about it, because, well, I wasn’t expecting it to go anywhere.

And then I found out that I’ve been longlisted!

The prize is the Lucy Cavendish College Fiction prize and they have had a record number of entries this year, hence selecting a longlist before a shortlist. The shortlist will be announced later this month. And, whilst it would be great to make that too, the wonderful part’s already happened.

You see, the thing is, without even realising it, without having any idea that my brain had started working that way, I’d stopped believing that good things happened to me. I honestly don’t mean to sound negative when I say – and again, I didn’t even realise I was doing it, otherwise I could maybe have had a word with myself – that the past two years have been so difficult, that I’d started believing that it could only be that way. Bad things happened, yes, and maybe slowly over time I could reverse them. But something good happening to me? Something huge and brilliant with no downside? It wasn’t part of my world. And I’d forgotten what it felt like.

This is what it feels like. It feels fan-bloody-tastic. Not because I’d like to get my book published (although of course I would, one day, if the stars align), but because it’s reminded me that life can be good to me.

If you’d asked me, I would have said that I don’t believe in fate, no way; things happen, and you make of them what you will. But it turned out that actually I did, and not in a good way. So this longlisting has broken me out of a very dangerous prison, and I’m so grateful.

Since that bubble burst, to try to make sure it stays burst, I’ve been reminding myself every day that good things do happen. And I celebrated this particular good thing in the only way available for me right now: with cake.

I’ve been doing it all wrong

Here’s something I should have emphasised in my last post. Those thoughts of loss come upon me relatively rarely; I have bad days (right now) relatively rarely. And if I get my health back, fully back, none of it will really matter anymore.

So here’s how I’m trying to look at it: when I do go back to London and back to my ‘old life’, it’s not my old life, it’s a chance to do everything over. You know how people say, ‘if I only knew at 22 what I know now …’? Well, I do know all that. I have all this life experience, and maybe I have the chance to start all over again. To build a life exactly how I want it, with greater judgement, wisdom and hopefully sense of humour and gratitude than I had first time around. It’s also going to include a lot of cake.

Anyway.

New subject.

My ski buddies will recognise the following picture: the old me, on a ski lift, goggles pulled up and back, face to the sun, eyes closed, no smile, fingers pulling back the skin at my temples. I’m trying to avoid those ski instructor white crow’s feet by making sure my tan is even.

But I realised, I’ve been doing it all wrong. Not my recovery, but my life before I got ill. My crow’s feet aren’t etched deeply enough. You know occasionally you meet someone whose crow’s feet are full-on, meeting-up-with-the-cheek-laugh-line troughs? That person who, as soon as they’re amused, their face cracks straight away into that deep, lined shape because that’s their most natural expression, because they smile and laugh all the time and find all of life so much fun? That person who is infectious and warm and, yes, envy-inducing?

I’m going to become one of those people. For now, for today at least, I’m assuming that it’s not if I get my health back, it’s when. And so when I do, I’m going to find life so much fun that when I go skiing I don’t think to stop and clear my expression and get my tan right. I’m going to be right there in that moment (after all, I’ve been looking forward to it all winter) and I’m going to end up with white lines all over my damn face.

Hang on, what just happened?

I had a bad day this week. It was the first bad day in a while, and I don’t know what triggered it, but I felt really off. Exhausted, achy and off. And with the offness, came a lower mood.

Here’s how I feel when my mood is low.

I’m 38 years old.

Two-and-a-half years ago I was young, I had a great job, I worked hard. I had a busy social life, I travelled, I liked going to new restaurants in weird parts of town, I enjoyed exercising and most of all in the world I loved to ski. I had a steady boyfriend and was kind of expecting that some time soon (not next week or anything, but in the next couple of years) we might get married.

Fast forward to the present day. My friends, family and colleagues, plus the wider circle of people I know on facebook, they are moving on and up. They’ve been getting married, having babies, winning promotions, moving jobs, cities and countries. I’ve missed it all. But I haven’t just missed their doing it. I’ve missed the chance to do it all for myself.

The best way I can explain it is that I feel old. Not old as in infirm (I do feel that, but I’m hoping it will pass) but old as in: the time of life when I make decisions, when I set things up, when I shape the rest of my life, has passed. I spend a fair amount of time wanting to go back to the way things were before, but the longer it takes, the stronger the realisation that there is no ‘before’ now: that life doesn’t exist anymore.

I saw myself as something of a high flyer for the first 12 years of my career. Now, I don’t even have a career. In its place, I have a deep gratitude (mixed with a vague sense of anxiety) that my work have stuck with me, that we have a good insurance policy, and that when I’m ready, I can start to do bits and pieces again.

I’ve lost the hopes I had of marriage. You may say, marriage, who cares (although a lot of people do and I think I’m one of them), but let me put it this way: I’ve lost the fact of having someone to share a life with. That person’s gone, and although you might argue they are gone in a way that showed they were never actually there to begin with, I thought they were. I really did. So you see, I’ve lost more than a crap boyfriend who didn’t understand me and wouldn’t help me. I’ve lost what I thought I had: a partnership, someone to spend and build a lifetime with.

I’ve also missed the chance of having babies. In some ways this might seem like the biggest tragedy of all, but honestly I wasn’t ever sure that was for me. It seemed so tiring. (A bit telling, you might think.) But yes, if I’d wanted babies, if I’d wanted to spend the next twenty years raising children, those hopes would be dashed right now. I just couldn’t possibly.

Babies aside, I know I haven’t really missed all of my chances. But you have to admit, with the limited capacity that I have at the moment just to see for short spaces of time the people that I know, just to turn up at work a couple of times a week to do a few hours of not-very-much (and to be clear, both of those things are things I aspire to rather than being currently within reach) – you have to admit that you could forgive me for thinking: how on earth am I going to get any of it back?

And when I have days like this, and my mood is on the low side, I end up asking over and over again: hang on a minute, what just happened to me? How the hell did I get here?

And although I think about things all the time, although I write this blog, although I’ve had people to talk to about it: I don’t think I’ve got anywhere near processing all of it yet. I’m too frightened to.

It’s too much.

Getting ahead of myself

Over the past two years I’ve learned not to get ahead of myself, because later on I’ll get upset when I can’t do whatever it was I was thinking of or planning. Or, worse, I’ll do it anyway and relapse. But in this case I’m going to allow myself a little slack.

Sidenote: I went on my trip for hot chocolate (and a banana muffin), which was great, but it was a little early and knocked me out for a day or so. No greater harm done than that, so we’ll try it again in a couple of weeks’ time.

So sometimes the progress is fast and sometimes it feels very slow and there is a really long way to go yet. I’m still working on getting back to where I started first time around. For that reason, because there is such a distance to go, I’m going to allow myself a little slack and think about how good things are going to be, or have the potential of being.

There are so many things that I am going to enjoy so much when I’m able. I want to do it all. Go to work, see my friends, put on nice clothes, go shopping, see other friends, spend time in the sunshine and in green wide open spaces. Maybe even go on holiday one day. So much of my life has been put on hold and I want to pick it up again. Not just work and friendship and exercise but love, sex and everything in between. I want to soak it all up. I want to get out there again and soak it all up.

Benjamin Button

I feel better.

I feel better I feel better I feel better I feel better.

I typed those words out five times rather than copying and pasting, just for the joy of it.

The pleasure of being upright for longer and longer periods instead of trapped on the sofa all day is immense. My body feels light again.

I can do jigsaws, I can knit, I can colour. It’s not much more than that right now, but the days have variety and meaning again.

Sometimes the progress feels quite slow, but sometimes it feels very quick, and those days are the best. I’m getting stronger and younger as each week passes. I’m Benjamin Button.

I’m doing a 20 minute walk each day, still not exactly at lightning pace, but it’s getting there. And next on the list is a trip somewhere, for the first time in literally months. Mum is going to drive me into town for a hot chocolate. The whole thing should take well under an hour and if that goes well the next target is to start getting out and about more (and for longer) on a regular basis. I expect that will take a while to build up, but it will all come in time and I’m so pleased.

I don’t think I’ll ever stop being thankful for this; I know I’ll carry on wanting more, but I’m promising myself I’ll always try to remember to be grateful for how far I’ve come.