Medication, Moderation, and Meditation – My Life With Invisible Illness

I don’t have to think about it that hard to do a roundup for the year – I didn’t really have one. With chronic illness it’s hard not to consign whole tranches of time to scrap. Yes, I had my moments, and yes there were some good times and no, I’m not saying my life is shit – in fact it has, structurally, improved a bazillion percent.

This year I moved house to an area where I have access to not one but three swimming pools, a community centre that does cheap lunches as well as housing a treatment room and hairdresser so I can feel better and look better for a fraction of the price. I have also found a very cheap community education centre. Mixed reviews on that, but really, it’s all good. I’m now so central I rarely have to think about transport, and can walk to the station to go to Brighton.

This was a year in which I wanted to do loads of writing, but I barely wrote here, let alone anywhere else. I went through all the council’s upgrades for my old flat, packed, moved house and discovered a new neighbourhood were I am much more… shall we say ‘forwardable’? Perhaps ‘sustainable’ would be better. Anyway the net effect is that Ten does help me but I feel less stressed about being reliant.

So what is the state of the Elaine? I’ve had some rough patches, like not being able to walk without pain down my back all summer, and now I have plantar fasciitis, which is equally limiting. However, I now have a new neurologist and a new GP and between their lack of attachment to old regimes and my own quest for embetterment (sh! it’s like embiggening, bear with!) I am making some exciting discoveries. First of all, the Naproxen that I was taking as a preventative prevented NOTHING. I have no idea why it’s taken me so long to really acknowledge that fact, but I have, and with the support of both the neuro and the doc, I’ve come off it, to no ill effect. I decided in a fit of ‘fuck it lets try everything again’ to go back to first principles and try drugs I’d already tried. Now I’m increasing on Pregabalin and I’m seeing some improvements. I can’t remember why I ditched it last time round, but it was over 10 years ago, and I am quite literally a different person now, and, probably crucially, I get the Botox treatment now, which has taken lets say a third off my total pain load. Recently I’ve had a couple of days in a row where I’ve not reached for the Sumatriptan. In winter? That’s practically a miracle.

If you are ill enough for long enough to consider your condition chronic, my take away message is – never give up. Unless you are at your optimum with the meds you are on, keep fiddling with the combinations and doses and never give up. They may not make drugs specifically for your condition, but if that is the case there are often dozens of drugs you could try.

When I first got ill I had been a work hard and play hard kind of a person. Put simply, I drank and I took recreational drugs and I didn’t have the first idea about self care. Yes, I had an exercise regime. That isn’t enough. You need to learn self care and you need to learn to be open to changing your habits. Out of everything I’ve learned on pain programmes (yes, multiple) here’s a take away message about that – if you have chronic pain you need to learn to pace both activity and rest. Google it, learn it, practice it, then tell me it doesn’t help, because it does for me, and even if your condition is worsening right now, it will help you too.

So, what else have we learned? Well, I have to say, I have literally no idea who I would be now or whether I would even be alive at all if I hadn’t learned meditation.

At a certain point in my thirties I started exercising on purpose. Sure, I’d swam a bit and always walked miles, and danced away my teens and twenties but there came a point when I wanted to do something more structured. I headed for the gym and started weight training. That was going ok, my then boyfriend also went, so we encouraged each other and we saw results and enjoyed it. One day, though, I saw some guys doing Tai Chi through the window. “I WANT TO DO THAT” I screamed at them. And they told me they were doing a beginners’ class and that if I wanted to hop on board I’d better get to it because it had just started. I soon jumped ship for Tai Chi and, like the obsessive nutter that I am, I started going to two classes a week and also practicing with a classmate who I also worked with on the roof of our building during lunch hour. Roofs are great. I love roofs.

Tai Chi was great, and the classes were given a certain added something by most of the students being taxi drivers. I felt that was a good thing. Who better to do a form which is in sympathy to a driving (geddit?) metaphor of ‘life is a journey”?

We neared the end of learning the form after a couple of years and I could see that the next step was to learn the sword form. I had a sinking feeling – one of the things I disliked about Tai Chi was the learning. All the form. Please, no more form.

I’m begging you.

So I left and started with Iyengar yoga. That was great. More form, but a whole different vibe. I went up to three times a week, so my work hard play hard routine didn’t *just* involve tanking drinks at the pub, I also worked my body quite hard and my gods do I wish I had that body now.

However, the yoga didn’t save me from having a massive crash at work. I started having a lot of migraines, a lot of cystitis, my back went, and I stopped sleeping. Obviously, something had to give, and it was me.

Sorry, I’ve digressed, but when I *got* ill, I stopped being able to do any of that stuff. Not only did I lose my career and my social life, but I also lost the pleasure and challenge I’d enjoyed with my body and my mind’s journey through these various exercise regimes.

When I got ill I realised I’d never survive living where I did – the south facing flat opened onto a playground which in the summer was insufferable. I got a transfer to a slightly quieter estate, and found myself crawling distance to the Buddhists.

This was handy, since my body was so far from cooperative there was very little I could do with it apart from paced rest. You could get a lunchtime meditation class for £1 at the London Buddhist Centre or for free if you can’t afford it, and that is still true today. I spent a decade courting the Buddhists. I did all the things, lunchtime drop ins, retreats, courses, I joined up, I started working towards ordination. It was all good, really, and it totally changed my headspace. Take away message? Meditation can help you. Learn it in a class, or online, don’t try and learn it from a book, that’s mad. Here’s one I made – give it a go if you fancy it – it’s a body scan which is supposed to be a tool to help you learn to focus and to help you rediscover your body, but a lot of people like it for falling asleep to, and I don’t blame them. In a spirit of not wanting to cause your or others’ possible hospitalisation or death, please don’t listen while driving a car.

To round up. Yes, I’m still ill. If you want me to do something involving evenings or travel or strip lights or motion or sitting or standing then I’m still not doing it. However, I’m not as bad as I have been, so – Yay.

If you are a fellow spoonie with whatever ailment and you might be able to use any of what I have spend a decade and a half learning then have at it – review your meds regularly, review your lifestyle, and, for my money? Learn meditation.

That is all for today! Well done for getting this far, and season’s greetings to you and yours!

Here’s a nice reindeer Poppet modified for you. You are welcome.



8 thoughts on “Medication, Moderation, and Meditation – My Life With Invisible Illness

  1. Ive learnt so much reading about your invisible illness. Keep writing about it, lady. Im sure it’s helpful to people in similar situations. Oh, and for those people’s loved ones, as well.

    1. Ta matey!

      I don’t write about it often, I don’t really want to be a disability blogger per se, but then again I don’t want to deny the realities of my life, either.

  2. Thank you for that round up love!
    I take much of what you say on board – especially having had my own energy crash to round off my year of too much work and nowhere near enough rest. All I have done for the last month is rest, hot yoga and a smattering of creativity and gradually I start to feel better. The hot yoga was a killer at first and is always a challenge – but the detox effect is working, slowly I am getting some energy – evenings are still pretty much a no no unless I plan for them and rest up but I still use up too much to be of able to function much the next day. So my new year new me is a maximum of 3 days a week work – as in teaching – combined with more hot yoga – I join the gym on their “amazing” offer of £39 a month unlimited access and I will carry on with my HIV yoga class once a week with upstairs Dan – I find I am enjoying being around others with the same challenges it makes me feel less freaky! I will continue to write – I have actually managed to write a few hundred words this week and work on another illustration for my upcoming book Teddy’s Toys! I am also trying to launch upstairs at the shop my creative printmaking and sketchbook courses – watch this space!
    We will end the year in pure rest in the beautiful surroundings of the lake district where I can breathe in the cold clean air and prepare for the changes to come.

    1. Darling! And I hope to see you, too. You come home when Julie does, so I’ll leave the doggy with her and come over.
      I am so frustrated not doing anything creative but it’s just one of those two steps forwards one step back things where you can only work with what you have. We both have much to look forward to, and I’m loving the things you’ve been doing – the bird is beautiful. I am jealous or envious whichever it is, of the writing, but I’m not dying of it because for the past few weeks I’ve started having IDEAS which is really a new phase for me. For the longest time I’ve been too ill, but lately, yes, little ideas, so… don’t want to hex it but we will see!

  3. I really really amazed to see the people “Doing” a lots and lots.
    In contrast, I don’t do anything other than just being myself.
    I don’t do any special exercise, yoga, meditation etc etc nothing but just live. But my life, daily living is full of work.
    I don’t have a car (mean lots of walk), I don’t have washing machine (mean all hand wash), I don’t have any cooking processor (mean all cut by a knife) etc etc = primitive manual work. And pretty naturally as an old man who almost lost all the teeth, those cooking mean, all the vegetables or a fruits like an apple were cut 1mm or even thiner. And what I’m doing was almost completely recorded in this blog = lots of making (almost all by hand tools) —– with all those endless manual work needed to have almost robot like meditative practice. = So, why do I need to have any more special work ?
    Being myself is what I was born to be, mean I’m fulfilling my Karma and this is the state of the Dharma. = and this is why I don’t get ill hence I need no medicine.

    I guess, people started wrong place and made a life needed to have lot of artificial additives. I hope you to give a thought to this fundamentals and sort your life out.

    1. Well, even from this one blog post you can probably see that I spent several years over Tai Chi and yoga, although my work at the time was, as you say, toxic, as was my lifestyle apart from those things. I then spent 10 years learning meditation.
      Lovely for you that the Dharma keeps you well, perhaps if I lived in a Buddhist society I, too, would be simply well.
      However, there are no real statistics for death related to fibromyalgia or, for that matter, migraine. I imagine that in an extended family set up and perhaps in a warmer climate someone such as myself might never have got ill in the first place or would be able to manage with some support. I think that probably as well as being unlucky to live in such a stressful society I am also lucky to have access to medication and state support. Were I to live in another country or at another time and not have a life of privilege I would imagine a road traffic accident or an industrial accident would have been more than enough to see me off.
      I continue to meditate and am grateful for Dharma teachings I have received, they help with acceptance. I also have access to teachings via the internet.
      I think it’s a bit cheeky for a total stranger to tell another person to sort their life out, if I have learned anything from Buddhism it is that everyone suffers and you don’t know what you can’t see, but thank you for your input, I hope to hear from you again as we get to know each other more.

  4. I have done the body scan meditation many times since you posted the link. I like it, but the music at the end scares me every time, lol. Also, I can’t count the times I have to peel my tongue off the top of my mouth, crazy!

    1. Ah! I have a fix for that! I know what you mean, whenever I listen to anything direct from soundcloud that happens. Most annoying. So all you have to do is download it. Onto your computer, onto a phone, whatever you prefer.

      Another trick to relax the muscles at the back of your tongue is to pull the tip back like a turtle’s head so that it is still facing forward but your tongue is kind of plugging your throat. You can’t do it forever, and if feels a bit weird, but it does give those muscles a chance to relax. You can do this any time as you are sitting watching TV or reading or instead of ‘resting’ your tongue in your lower palate during the meditation. It feels a bit odd while you are doing it but your tongue may feel a bit more relaxed afterwards.

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