The Sound of A Wild Snail Eating

“The velocity of the ill, however, is like that of the snail.”
– Emily Dickinson

The Sound of a Wild Snail Eating by Elisabeth Tova Bailey is a beautifully written book interweaving her experience with chronic illness with her life co-habiting with a snail. Perhaps my own chronic illness gave the book a certain poignancy but I couldn’t put it down.

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The book had been on my wish list for so long that I had forgotten what it was about until a post over on Bimblings reminded me. Read the book but also read the post, both are excellent, high quality pieces of writing.

Back to Wild Snails… Each chapter is snail sized, perfect for those of us with brain fog or hands which don’t like to hold books. It is scattered with quotes from others as well as quotable phrases from Bailey.

“When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neurons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how. The search is exhaustive; the answers, elusive… Given the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties.”
– Bailey

Unable to get out of bed, a friend brings her some flowers and a snail from nearby woods, something I’ve recommended before as a way of connecting with nature when you can’t leave your house. Friends have come bearing gifts of conkers, acorns, interesting looking leaves but so far no animals!

Hiding

“The tiny, intimate sound of the snails eating gave me a distinct feeling of companionship and shared space.”
– Bailey

I suspect that anyone who has been unable to leave their bed or house for long periods of time knows the feeling of loneliness, of enforced solitary confinement and for Bailey, the snail would alleviate some of this additional pain. But more than that, the snail would teach her and guide her like a mentor. Watching the snail “provided a sort of meditation; [her] often frantic and frustrated thoughts would gradually settle down to match its calm, smooth pace.”

Snails

In between her reflections on the snail and her own life, are interesting facts, for example her particular snail possessed around 2,640 teeth in it’s tiny mouth. And a snail’s world is painted predominately by smell, taste and touch. In learning about the snail, she sees herself:

“I learned that snails are extremely sensitive to the ingestion of toxic substances from pollution and to changes in environmental conditions, such as temperature, moisture, wind and vibration. I could relate to this, as my dysfunctional autonomic nervous system made me sensitive to these things as well.”

To see ourselves in a mirror, and to see others experiencing similar feelings, is incredibly helpful in coming to terms with our illnesses and our new way of being in the world. I think, to some extent, my animal spirit posts have given me something of this. They are vessels for self reflection but they are also companions in facing shared difficulties, alone but together.

““I am going to withdraw from the world; nothing that happens there is any concern of mine.” And the snail went into his house and puttied up the entrance.”
– Hans Christian Anderson

I devoured The Sound of a Wild Snail Eating in much the same way as Bailey’s snail ate it’s way through letters and envelopes. It is a short, small book, filled with poetic observations and for me, is the type of nature writing I aspire to. There is an ordinariness in it. She is not exploring remote, far flung places. She is not at a microscope. She is someone who could easily be me, or you. But through the snail, she found herself a way of coping in a challenging situation.

“In a March 2009 article in the New Yorker, Atul Gawande wrote, “All human beings experience isolation as torture.” Illness isolates; the isolated become invisible; the invisible become forgotten. But the snail… the snail kept my spirit from evaporating.”

By the end of the book, her health has improved but she remains ill, keeping the snails teachings with her; “lots to do at whatever pace I can go. I must remember the snail.”

Climb Mount Fuji
O snail
but slowly, slowly
– Kobayashi Issa

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Pain scales are a pain in my…

One of the most frustrating things from my stay in hospital is when they asked about pain.  On a scale of one to ten, with ten being the worst pain imaginable, where would you rate yourself when you’re up and moving around?  And when you’re comfortable and resting?  And right now?

Arghhhhh… This question does not work for people with chronic pain.  As I wasn’t actually in for pain I didn’t put much thought into my answers especially after I (politely) challenged a nurse about the uselessness of me answering.  But had I been in for pain related stuff, how would I respond when the first half of that pain scale never really applies to me.  This means I lose nuance and nurses who don’t know what ehlers danlos is look at me funny when I say 5, 6 or 7 – my most common pain scores according to their scale.  I no longer look in pain when my pain is 7 or below.

Also, the expected result was that when I was moving around my pain would be higher than it is when I’m in bed.  But for me that’s often not the case.  I know how to read my body and know when I’m overdoing it and I stop.  Because most of the pain isn’t an instant thing, it’s not like I stand and immediately I’m in agony, I tend to be in more pain when I’ve stopped.  Some of this is adrenaline and some is that I’ve stopped before the pain peaks.

The other really frustrating part of it was hearing other people claim to be at a 10 when they were pretty much fully functional.  In my books, a 10 has you close to passing out or passed out.

But there are options out there for improving this quantitative measure of pain.

Firstly, do the basics and show a patient the pain scale with faces on, it gives a bit more context and helps the patient have a guide to consider.

Although again, for people with chronic pain, the scale shifts.  It takes a hell of a lot of pain to make me cry or even get close to tears these days.

Maybe go one further and use this one from Hyperbole and a Half:

There are also written pain scales which patients might find useful as they don’t just look at the pain but look at the impact of said pain:

0  Pain free
1  Very minor annoyance-occasional minor twinges
2  Minor annoyance-occasional
3  Annoying enough to be distracting
4  Can be ignored if you are really involved in your work, but still distracting,
5  Can’t be ignored for more than 30 minutes.
6  Can’t be ignored for any length of time, but you can still go to work and participate in social activities.
7  Make it difficult to concentrate, interferes with sleep, you can still function with effort
8  Physical activity severely limited. You can read and converse with effort. Nausea and dizziness may occur.
9  Unable to speak, crying out or moaning uncontrollable- pain makes you pass out
10  Unconscious. Pain makes you pass out.
As an aside, according to this particular scale, my pain is always 7 or above…
A similar version exists but with colour coding to help:
Again, I’m a 7 or above most of the time with this one and I regularly hit 8 in the night.. See how unhelpful they are for chronic pain?!
You can also personalise your own pain scale which might be helpful for taking to appointments which are about pain.  There’s a tool online which can help with this and I’d recommend looking at other pain scales as well to get a flavour for things.
There is work going into pain scales, at least in America and I’m hoping that work goes into how the NHS use them as well.  They are a useful tool but they need a lot more tweaking before they can be anywhere near accurate measures of a persons pain.

The ever wise and wonderful Jo Southall has a post on her blog about painscales which I’m considering printing off and handing to the pain clinic next time I go.  Every time I have to fill in the pain scale form and draw on an outline of a body where my pain is, here’s a hint, pretty much everywhere…

As Jo suggests in her blog, much more helpful questions are about how you are coping with your pain, how it is affecting your life and whether it is disrupting your day to day activities.  Not only does this give a clearer picture to the medical practitioner but it also means you can look at making adjustments which will ease those issues caused by pain and in turn you may well make the pain more manageable.

FOMO and chronic illness

It’s not a phrase I use, so in case you’re not familar with it, FOMO is the fear of missing out.

Meg, from That Hummingbird Life, sent out an email recently about FOMO:

Whether it’s feeling like we should have done things in the past, getting caught up in thinking we need to do/buy something because we’ll regret it if we don’t, or feeling like the odd one out, it’s fair to say we’ve all experienced it.

It’s something I’ve had to deal with, although I’m not sure I’ve been especially conscious of the process, because of my pain. There are obviously many things I can’t do and I have to be more choosy about what I do do. Which almost makes it easier because there are physical consequences to trying to do everything and I know I physically can’t do everything I want to do. One, probably less helpful, way I have dealt with it is by mentally blocking out things which aren’t an option. Most of the time I don’t think about me going on holiday, even when talking about other people’s holidays, because it’s probably not going to happen.

More helpfully, I sort of approach FOMO in terms of compersion or shepping naches. The first is a term used mostly in terms of poly relationships and the second is a Yiddish phrase. Both essentially mean getting pleasure from seeing someone else get pleasure. For compersion, this might be feeling all full of love when you see your partner is in love with their other partner. For the Yiddish, it seems to be used mostly for the pride or gratification that a parent/teacher/grandparent gets when they see their child enjoying themselves or achieving something.

This can be tricky, but for me it basically means that I don’t get jealous when someone is doing something awesome (well, I do sometimes…). I see it as something that is making them really happy and I am happy when my loved ones are happy. We are a very individualistic society and are socialised to think “I want that” when we see someone with something, even if we don’t actually want it. I think part of FOMO is tied into that. When someone is telling you about something brilliant they’ve done or are doing, a part of us leaps to I want that or I should want that or I should do that. By doing this, we miss the awesomeness of just basking in the glow of someone who feels great.

Maybe my thought process might help explain..

Person A: I have just been on a great holiday…
Person B: Oh, I’m so jealous, I really want/need a holiday (this may be said, thought or internalised somehow)
Person C: Oh that’s great but shit, I should be going on holiday/wanting to go on holiday/all my friends love travelling what’s wrong with me…
Person D: Brilliant, tell me more about it, I’d love to hear the details and see some pics (might have a moment of longing or holiday lust but goes back to listening to person A and living the experience through them. I want to say living vicariously but that, to me, has negative connotations.)

Person B and C are probably going to experience a bit of FOMO and think they should be going on holiday and possibly to the same part of the world because A had a great time and they want to join in.

Person D is getting the magic of A retelling the adventure and seeing A smile and engaging with A. Person D is experiencing something different to the holiday itself but it’s still it’s own magic. Person D, for whatever reason, hasn’t got bogged down in what they don’t have or aren’t doing. They are focusing on what they do have which is a great friend who’s wanting to share, rather than what they don’t or can’t have, namely a holiday.

Person D is probably more like a parent filled with delight when their child comes home from school full of excitment about their spelling test going well and having a great time playing with their friends and having been invited to someone’s house for tea for the first time.

We are so socialised into needing everything for ourselves that when we hear about something we can’t be part of, we sulk and we kick off. Not because we want the thing, but because we are conditioned to want everything, especially if someone else has it and we don’t.

I think, for me, the other important aspect of how I approach FOMO is prioritising! I have limited energy and know that if I do something on monday, I need to rest on Tuesday etc. I have no choice. If I ignore this and book something in monday and tuesday, tuesday’s thing will probably end up a write off. So I have to figure out what I want to do most, and this is helpful in living authentically anyway. So I’m faced with x and y, which initially I want to go to both of. But then I stop and think and maybe x is more interesting or y is similar to something I’ve done recently or actually, I didn’t want to do y but I felt I should. X is the winner! And I will enjoy x a lot more than if I tried to do x and y because I would break myself doing both and would spend all of x worrying about how I would get through y. Essentially, I do fewer things but with more heart. The same goes for friends, I go for quality over quanitity both in terms of the actual people and the way I spend time with them.

And if there’s something that you do really want to do, do it. Or find a way to bring it into your life. Or do bits of it. Like if we’re talking about a party, go for the first hour, really throw yourself into it and then head home. Basically, slow down and think about what you actually want. And be grateful for the things that you do experience. And change your viewpoint. Instead of thinking a half day trip is stupid and not anywhere near as good as a two week holiday, make it a big deal if it’s a big deal for you. Take photos, treat yourself to something as a reminder, make a collage afterwards etc. Treat it with the same respect as a holiday.

I used to spend entire days by the sea, long day trips that I loved. As my pain got worse, I couldn’t cope with it anymore and got grumpy with myself when I had to leave after a few hours. I ended up ruining half day trips with dreams and longings for full day trips. Over time I realised I was shooting myself in the foot and started to let go of what I used to be able to do and focus instead on making sure my shorter trips were great in themselves. I had to stop comparing them to my full days and instead begin treating them as something in their own right. I no longer try and do everything I want to but instead I focus on what I want to do most and enjoy it for itself.

There is no way round it, when you have a chronic illness, you are going to miss out on things. But by focusing on missing out, you miss out on what you can enjoy.

Connecting with nature when you’re stuck in the house

I love nature.  But I am limited to wheelchair friendly parts of it.  And only when it’s not raining.  And my pain levels and energy levels further restrict things.  And if I want to see nature that’s not in my immediate neighbourhood, I am reliant on friends and carers and my manual wheelchair.  Which all feels very limiting and stifling.

There are some great places to get into nature with the wheelchair.  York has a number of nice parks, a riverside path etc.  There is a nature reserve just north of the city (Moorlands), St Nicks Fields (I’ve not been yet) and within an hour there is Potteric Carr (I don’t think I’ve blogged about that yet but my review is over on Euan’s Guide).

However, if you can let go of the idea of what “being in nature” looks like, you can experience it from home, or even your bed.

For me, for a long time, being in nature meant being outside, being away from people, being in uncultivated, un-manicured space.  It meant sitting for a while breathing in fresh air.  It meant walking and getting off the beaten track.

I’m starting to adjust that idea.  In line with my word of the year, I am trying to notice the little things and that includes nature.  I do think you have to attune yourself to notice things, train yourself almost.

“I like it when a flower or a little tuft of grass grows through a crack in the concrete. It’s so fuckin’ heroic.”

― George Carlin

But surely you need to be able to get out of bed?

Not necessarily.

Think about where your bed is in relation to the window.  I  miss my old flat for one reason only – from the bed, at night, I could see the stars and the moon through the cracks in the blinds.  My current bedroom doesn’t allow that but the bed is opposite the window so if I’m in bed with the curtains open, I can see a slither of sky, a few tree branches and the sky (and birds and clouds) reflected in the windows of the drs surgery.  Sure, it’s not the same as being outside, but seeing a flock of birds head over is still a great moment.

Could a bird table be placed outside your bedroom window?  It’s not always an option but if you can, it would be great for encouraging nature to come to you.  Or plants placed strategically so you can see them from your bed?

Think similarly if you have a chair you spend a lot of time in.  When I’m not in bed, most of my day is spent in my rise recliner chair.  It’s angled towards the tv, but also towards the window so movement outside can catch me eye.  Just yesterday morning, I looked out my window and a wagtail flew onto the road, pecked around and flew off with some food in it’s beak.  I didn’t even have to leave my chair.  I’ve just glanced out the window and there’s a beautiful golden winter light catching the bricks of houses with it’s glow.

Other ideas

A gentle and effortless connectedness to nature helps give meaningful purpose to our lives, improves well being and allows reflection.  Establishing this connection can be facilitated by taking time to appreciate ordinary things and to engage more fully with nature.  Life is now rapid and we rarely pause to appreciate the moment.

Miles Richardson

Obviously what you are able to do will be different to me, and I can’t do everything I’m suggesting but I wanted to collate a collection of different ways you can connect to nature whilst being unable to go outside.

  • Connect with the seasons:
    • seasonal eating
    • seasonal creative projects – i am taking photos of the same tree each season for a year
    • seasonal celebrations – think harvest, think may day, hot cross buns in spring
  • Indoor gardening
  • Read magazines etc about nature and wildlife.  I like Wildlife magazine and National Geographic.  These have the advantage of being relevant to the season you’re in.
  • Read books.  There’s been a boom in nature books in the last few years so you’ve got plenty to choose from.  I’ve just bought Needwood by Miles Richardson.  Amazon describes it as “a celebration of the joy that can be extracted from ordinary things in the natural world”.  It is split into sections of time and my plan is to read it slowly over the year, in line with when he wrote each section.
  • Keep a book to hand to help you identify the birds etc that you see.
  • Watch things online or dvds about nature – there are plenty of David Attenborough programmes out there!  For epic wildlife, I like the Yellowstone series.  But perhaps more in-keeping with the theme of this post would be something looking at a more microscopic world, eg the secret life of plants.  For close to home (in the UK), maybe springwatch and its seasonal relatives?
  • Webcams can give you a view of the world that you wouldn’t get to see otherwise.  As well as zoos, places like national parks etc often have cameras you can access from their websites.  Apparently webcams are available specifically for avid bird watchers so you could use one to enjoy what goes on in your own garden.
  • Listen to recordings of bird song or rain or the ocean.
  • Enlist the help of others.  Although it can feel like you’re missing out, asking friends and family to take photos and bring in twigs, flowers, leaves, stones, shells, feathers etc can help you to feel more surrounded by nature.  Pay close attention to the objects – what do they smell like, feel like, look like.  Get to know the pebble, notice it’s intricate details, it’s subtle colours etc.
  • Notice the changing weather and how the light changes in your room, maybe even hang a crystal so you get rainbows dancing on your walls.
  • Cloudspotting is something I want to try again.  If you can, maybe take photos of clouds?
  • If, like me, you’re often awake in the early hours, listen out for birds waking up.  Can you identify any bird calls?
  • Follow nature accounts on social media.
  • Open your window so you can feel the breeze and smell the rain.
  • Surround your home with pictures of nature.
  • Creative projects about nature – photography, writing etc.
  • Decorate your room with pebbles, shells, driftwood, bowls of fircones etc.
  • Use incense or candles to create the smell of your favourite flowers.
  • Maybe get a fish tank.
  • If you can get to your front door, look out at the stars, breath in the air, feel the rain on your skin.
  • If you go out for appointments, look out for nature then.

I’d love to hear what other ideas people have for bringing nature inside.

Things which make my day easier

Someone recently found my blog by looking for “ehlers danlos can’t open jars” and I hope they found some help (try dycem jar and bottle openers).  I wrote a post in 2014 (2014, can you believe it?!) with some tips for stuff which really helps me. Anyway, a lot has changed since then so I wanted to write an updated version.

Collection of drinking vessels
a collection of my cups, a cup cover and one of my hot drink straws

If you find this helpful, do check out the 2014 post as it all still holds up.

  • Tablet and tablet stand – these were included in my last post and I still love my tablet and use it so so often throughout the day.  It’s my contact to the world.  It’s my books and my storytellers.  It’s my calendar.  It’s my notebook.  It’s my teacher.  It’s my alarm clock.  It’s my tv.
  • Pillows – find pillows that work for you.  I have two standard bed pillows and a, rather pricey but worth it, U shaped pillow.  It’s filled with beans so it squishes and my shoulders have dislocated a lot less since I got it as they are now supported at night.
  • Mattress raiser – I got mine through the local council.  Basically it goes under your mattress and allows you to raise the head end of the bed like a profiling bed would using a remote.  This makes it so much easier for me to get in and out of bed, more comfortable when I’m in bed but wanting to sit up and it’s easier for my carers to get me out.  The combination of this plus my mattress topper means that I have king size sheets for my double bed.  Much easier for my carers to get on and less likely to twang off in the night!
  • Bed wedges – there are lots of different options, I have one which supports my knees and ankles
  • Duvet raiser thingy which keeps the duvet off my feet (the weight of my not very heavy duvet is enough to hurt my ankles and dislocate my toes).  I have my thingy attached to my bed using a strap which goes round the mattress and I have a blanket pegged over the top, round the sides and the end of the bed so my toesies don’t get chilly!
  • Overbed table – I got mine for a bargain price of £3 at my local second hand furniture place.  It gives me a place to put things like meds, my tablet etc so that they’re essentially in my bed but not going to fall prey to my tossing and turning.  I have a tray on top of mine which has the advantage of making it look less clinical whilst the edges stop things falling off.
  • Key safe – this means that my friends and carers can let themselves into my flat if they know the code to the key safe.  In my old flat I kept my spare keys in a combination lock locked shed.  It means I don’t have to get out of bed to let my carers in and it’s there in an emergency so other people can get into my flat.
  • Cutlery – I can now only use my bent spoon to eat, anything else causes too much pain or is impossible.  You may find spoons easier than using a knife and fork or maybe just need a thicker handle.
  • Plastic crockery – this is lighter and obviously less breakable.  I have some nice bits from Cath Kidston, paperchase and I got some in the BHS closing down sale.
  • Cups and drinking accessories (what you don’t accessorise your drinking? how last season are you…?!)
  • Trolley – this lets me move a lot of stuff from room to room at once, reducing the need for multiple trips as well as reducing risks of dropping things and lessening the pain in my hands
  • Plug pulls – a little bit of plastic which attaches to your plugs to make them easier to pull out, genius!
  • My pouch – I love my pouch.  It holds my tablet, my money, my keys etc.  And because it isn’t an actual bag, it squishes down beside me in the wheelchair so I can get to the important stuff.
  • Hairbands – especially wide fabric ones and headscarves are perfect for bad hair days, weeks when you’ve not managed to wash it etc.  And dry shampoo is also helpful here!

I’ve included links to help illustrate what I mean.  I don’t get any money from the companies and obviously you should shop around and find what works for you.  You may also be able to get some of these things through your local community equpiment service (in the UK at least).

 

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When sex hurts: Sex and chronic pain

The post is looking at when sex exacerbates existing non sex related pain rather than pain caused purely by sex.  Although not discussed here, changes to appearance, self esteem etc will all impact on your psychological wellbeing which can then impact on your sex life.

Chronic pain can be distracting, it hurts obviously and it can impact heavily on your life. Including your sex life…  Being in pain all the time does not make you (or at least me) feel sexy.

I wanted to do a post specifically about pain because I think the impact pain has on sex can be different to other disabilities. My first point would be to talk to your doctors… However,  I know that that isn’t always all that helpful… indeed, the NHS seems a bit lacking for in depth support…  (but yay, they have something, I guess)

I don’t have a magic wand to make sex with chronic pain easier but having sex can help with the pain so it’s worth a try, right?!  Orgasms cause endorphins to flood your body which helps with pain relief.

In no particular order, here’s some things to consider:

  • Communication – talk to your partner, its ok to be worried about the impact of sex on your pain, particularly if you’ve been avoiding it. Talk about where the pain is worse right now, should your partner avoid touching parts of you today etc
  • A lot of conditions fluctuate, make sure your partner understands this; being able to do something one day doesn’t mean you can do it the next.
  • Plan ahead. Unlike the movies, sex doesn’t always have to be spontaneous.  There are so many reasons why that doesn’t work such as children, working unusual hours, carers etc.  And if it helps, you can try and schedule in some rest time before hand and recovery time afterwards.
  • Find out what the best time of day is for you in terms of low pain, higher energy levels and higher libido
  • If being touched is painful (or even if it isn’t!), use none contact ways to arouse each other eg sexting, phone sex, talking flirty or dirty, mutual masturbation, pornography, erotic literature or try light touch such as feathers and silk
  • Massage is another way of being intimate, just be careful with painful joints, muscles etc
  • If your hands are in pain, try using your tongue
  • Warming the bed beforehand eg with an electric blanket may ease some of your pain
  • Sex toys might be easier for you and your partner
  • Cushions – well placed cushions can be invaluable! Think propping up hips etc
  • Where are you having sex? Would your wheelchair or riser recliner chair or electronic bed be more comfortable or in the water?
  • There’s also the impact of pain meds, they can decrease your libido, and you need to make sure you are on the right meds for you at the right dosage. If your pain isn’t controlled at all then of course sex will be harder
  • If your partner is your carer and you need help getting changed or into position, maybe you could ask someone else to get you ready or make the care into the foreplay.
  • Go long and slow or short and sweet, whatever works better for you
  • Have a think about what positions are best depending on where your pain is etc
  • Try not to stay in the same position for a long time if this causes you pain
  • Depending on where things are in your sex life, go back to basics with date nights, flirting, kisses, holding hands, cuddles…
  • Muscle relaxants, a warm bath, massage, a glass of wine might all aid things by relaxing you and your muscles
  • If something doesn’t feel good, say something.  Don’t assume your groans are conveying the right message! Maybe even have a safe word or be clear that stop means stop right away.
  • Use Google, look up good sex positions for ehlers danlos or whatever you have
  • edited to add, lube, lube is good

None of this is going to be a quick and easy solution unfortunately…

I’d really like to hear from you if you’ve got any more tips.

I’d also suggest popping over to The Hippy Geek who has joined two beds together so she can have an adjustable bed and still share a bed with her husband which I think is awesome*!

*be in no doubt here, as awesome as the idea is, if you ever end up in a relationship with me, you’ll be in the spare room! I love my double bed and all it’s very specifically arranged accessories and I’m not giving up my middle of the night internet for anyone!

Personal strategies for living a good life

One of the last sections of my Future Learn course is around personal strategies for living a good life with an impairment.

“Because disability studies collects a huge range of impairments, each of which are experienced differently in everyday life and have different impairment effects, there is no end to the personal strategies people with impairments use to support a good life.”

That being said, it does suggest some examples; community, the spoon theory as a means of helping people understand and mindfulness.

I started to respond with my own personal strategies but ran out of space so I thought I’d carry on over here and invite your ideas and strategies as well.

Community

Online community is a huge way I cope with things. I blog and use twitter to “meet” other people with my condition which helps me feel understood as well as having people to offer helpful tips such as what bottle opener works best. These friends also understand the impact of society and it can be so helpful to know you aren’t alone in dealing with things such as access issues or abuse. Indeed, it helps me to realise that I am not the problem, if it’s happening to other people then it’s not about me personally. I could rationally reach that conclusion but the individualistic nature of western society can really make things feel personal.

Pacing

Pacing is one of my really important strategies. If you have chronic pain or fatigue, do look it up. It’s the idea of doing something for slightly less time then breaking then going back to it rather than doing a lot of something all at once and then paying for it.

Humour

Humour is essential. Admittedly, my humour tends to be dry, sarcastic and biting but there you go.  The first day I had care we got into a bit of a mess getting changed. It, like a lot of my life, is undignified and humour can make it easier to cope. It can still get me down of course, it just means I’m not always down about it.

Without a degree of humour, it’s hard to let someone else wash you intimately.  It can become tense and awkward if you let it.

Action for change

This is something mentioned by one of my fellow students.  Instead of coming up with personal strategies to navigate a world which isn’t designed for us, we should challenge that society.  And I think this is really important and there are lots of ways of doing it, from raising awareness by sharing your experiences to hanging off a bridge in your wheelchair.

A moan

It’s not a very fashionable thing but having a bit of a moan from time to time can help.  Don’t get stuck there but getting frustrations off your chest can be cathartic.  And can help with awareness raising!

Support groups

This should probably be included with community but there’s something more specific about a group of people who are experiencing the same things as you.  With that shared knowledge, you can problem solve, you can suggest ideas which have helped you, you become more aware of shared issues and can come up with ways to address them.

Netflix days

Sometimes, we need a down day.  And if that’s watching netflix in bed, do it.  I remember a conversation with a friend who has mental health issues where she was describing how helpful it can be to give yourself a day to indulge in things.  So long as you have a day or time in mind to force yourself back out of it.  My fear of giving in and not getting out of bed has long been that I’d just never get out again.  So this ensures that won’t happen (sort of) whilst giving you the crash time you might need.

Acceptance

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference

– Reinhold Niebuhr

I’m not religious or in AA but the sentiment expressed in the serenity prayer is one that I think is important when it comes to coping with long term illness and disability.  There are lots of frustrating things I can’t change – I can’t make myself better for example – and getting stuck in a place where I’m angry about it isn’t helpful (there’s a grieving process around coming to terms with acquired disability which is fine, but it’s not a place that’s nice to get stuck in).  It’s taken a long time but I feel I’ve mostly accepted my illness and that’s so much better for my mental health and wellbeing.  And then there are things I can (attempt to) change such as my old workplace being inaccessible.  And this is a much healthier way to use my frustrations and anger.

Creativity

Whether it’s a page in my art journal or a bit of work on a canvas, creating things helps me in many ways.  It’s a distraction from my pain, it gives me a sense of achievement, it’s a way of expressing myself and probably helps in other ways that I’m not really aware of.

image

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What strategies do you have?