Chronic pain and the cycle of grief

Like any major change in life, coming to terms with a chronic illness takes time and you will almost certainly move through the cycle of grief.  You will end up taking steps forward and backwards and will experience each step differently at different times in your life.

Shock and denial

Under the shock and denial stage, we find a few different phases that you might be in. It might be that moment symptoms start to show, when you realise that this isn’t going away or when you get a diagnosis.

I don’t remember how I felt when my symptoms started to show as it was so very long ago but at some stage I realised that the pain I was experiencing wasn’t normal and that took quite a bit of getting my head round – why had it taken 20 years of my life to discover this?  I then also had a lot of baggage around being ill, being told i was making it up, being told to stop being dramatic etc and this did, and still does, affect how i feel/think about my pain.  Because of all of this, I don’t think I really went through the shock and denial stage, I went through a stage of feeling validated instead.

Once you have a diagnoses there tends to be a couple of ways you can feel, or both at once.  If you’ve been trying to get a diagnosis for a long time and are fairly sure you know what’s wrong, then it can come as a relief.  Especially if you’ve been told time and time again that it’s all in your head, you’re making it up, you’re a hypochondriac etc.  The other standard reaction seems to be one of pain and shock – particularly I imagine if you were expecting a diagnosis to come with a treatment and a way of getting rid of the pain.

You may go into denial and push through and try and ignore the pain and fatigue you’re experiencing because you subconsciously don’t want to stop and think about what this means for the rest of your life.

You are also probably more used to acute illness or injury and suddenly are faced with something more severe that you’re expected to live with and to carry out all the normal living stuff with pain.

Pain and guilt

Pain wise, you have to adapt to living with pain and learn and experiment with what helps to relieve your pain.  You may also have to decide how to balance things in your life so that you relieve some pain but still have a life, or how much medication you use knowing that the side effects can reduce your quality of life.

Another way guilt manifests is the increased role in household jobs that your partner may have to take on, and in some cases, your partner may have to do some or all of your care.  There is also the guilt because your condition doesn’t just limit you, it limits your partners life.  If you used to go rock climbing together, you might not be able to any more and even if your partner continues rock climbing, dynamics have changed.

A very common way that guilt shows up is when you can’t do the things you feel you should be doing.  Note the words feel and should there.

For clarification, I am not saying you should feel guilty about not being able to do x or y in your home, just that these are thoughts and feelings that are common to people who have chronic pain.

Anger and Bargaining

I think this is probably the phase where you do a lot of googling and getting second, third and fourth opinions in the hope that the answers might change.  You might want to stamp you feet and shout “no fair” at the world.  You may get angry at medical professionals who tell you there is no cure.

You may become angry at those around you because they don’t know how to help you or are actually making things worse.  You may become angry at your body because it isn’t working as it should.  Or you may disconnect from your body and see it as something separate from you, something other that you can be angry at.

You may become frustrated because your future no longer looks the same and you don’t know what it will look like.  You may prioritise work over home life or get things really out of balance because you are hanging on to your old life with fingernails.

If you’re religious I can easily see that this is when you’d start bartering with your god. What did I do to deserve this? Why me?  These are ways that anger expresses itself in the context of chronic illness.  You may also bargain with your body – if you get me through x then I’ll rest etc.

There is also anger and feelings of loss (and depression) about losing the person you used to be or thought you were becoming.  If you had a great job, very well paid, that defined you, chronic illness might strip you of all of these aspects and leave you unsure about who you are now and how you’re going to meet the bills.

This stage feels like everything is out of your control.

Depression and loneliness

And when things are out of your control, you can’t do anything to change circumstances and can become despondent, giving in to how things are or feeling defeated by your pain.

If you feel your friends can’t understand or the pain is too high so you stop doing things you can very easily become literally isolated and lonely but there is also the emotional loneliness of feeling like the only person in the world who is dealing with this.

I’m stuck with this, life hurts, why bother trying to do anything…

I’ve written about friends and chronic pain before.

The upward turn

Very few people make depression and loneliness their permanent home.  Eventually, you rally.  Your body has an innate survival drive, a will to live which overrides the narrative so far.

You may start to seek out other people who have your condition and feel less alone or you may begin to invite your friends back into your life.  At rock bottom you have nowhere to go but up and it may take time to get there but you will.

Reconstruction and working through

Here you are starting to figure out who you are with pain.  This might be where you start to look for tips and techniques for getting dressed or equipment that could help with cooking.  This is a bit of a problem solving stage and the more problems you solve, the more you start to see what you can do instead of what you can’t.

This stage tends to be more energised than the previous stages, you have more motivation and are starting to have a clearer idea of the future – whilst also remembering that pain and chronic illness can be unpredictable.

Acceptance and hope

Acceptance does not mean that what has happened and what you are going through is ok, it means you are no longer struggling against it.  Acceptance lets you build strategies and coping mechanisms.  Acceptance means you know that you will have a flare up, you aren’t in denial about it, and so you can create a flare up plan.

In the previous stage you may not have quite come to terms with the idea that this is your life, you may not have accepted that flare ups may well happen but here, you know that things will change but that you have the strength to get through them.

Hope is a strange one.  I’ve heard people talk about hope as if it means there is a cure and there isn’t for EDS and many other conditions (this tends to come from people who don’t have chronic pain, especially medical professionals).  Hope for me means that there is a chance at a better quality of life and a way of living that fits with the pain rather than struggles against it.

I also want to add that in the context of chronic illness, hope can be wasted energy.  I was asked many times if I wanted to be able to swallow and I explained that yes, I do, but also I’m being realistic and I don’t think a magic wand is coming along.  This was then interpreted by medical professionals as me not wanting to get better when actually it was a case of not wanting to pin all my hopes on something that might never happen.  In some ways, hope is a twin to worry, neither change the outcome and both require a lot of energy and brain space.  To pin everything on hope can mean you spend your life seeing dr after dr, reading paper after paper trying to find a different answer and this isn’t something I find helpful.

I am not without hope but neither am I preoccupied by it.  Instead of future gazing, I chose to spend my energy and spoons on today.  And today there is no cure.

I am not an expert but I do live with chronic pain and I do know a lot of people who have chronic pain.  Whilst it manifests differently for different people, these are stages which are very common.

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Chronic Pain: Family and friends

None of us live in a bubble.  However independent we strive to be, we live in a society that works because of interdependence and the same is true of relationships.  Unless you live in a very isolated area, off the grid, away from tap water and supermarkets, you are interdependent.  For those of us who have chronic pain or illness, this means that you are not the only person affected by the pain/illness.

One of the sessions on the EDS pain management programme covers relationships and there was so so much I wanted to say or ask but that we didn’t have time for so I thought a blog post could be helpful.

Firstly, relationships are affected by and affect our pain.  Loved ones don’t tend to like seeing us hurting and so they try to fix it.  And obviously chronic illness can’t easily be fixed, if at all.  This can lead to friends and family getting frustrated at the circumstances and inadvertently taking it out on us.  It can also mean that they say things which are hurtful or counterproductive, even if they come from a well intentioned place.

From my own experience, there tends to be a spectrum of reactions from people we are close to – either the other person goes straight into care giver or parenting relationship instead of being a partner or friend, or, at the other end, tries to pretend that nothing is happening.  The latter seems especially true of longer term friends who knew you before your pain.  Neither extremes are especially healthy.  Whilst you do want friends who care, it’s more supportive if they support you rather than look after you.  Some people fall into the trap of defining their self worth around how they care for you and this can be a hindrance if you are trying to do more for yourself or if your condition fluctuates a lot.  This can leave them feeling roleless if you do get better and need less help, or if you get worse and need support from other people.  With the people who try to ignore or minimise your condition, you can feel you can’t talk about it with them and they are less likely to adapt with you and your condition.

Talking of adapting… Having chronic illnesses does make you a bit of a master of adaptation.  You learn how to do things in particular ways and so on but it’s easy to forget that friends and family need to adapt as well.  When I started needing crutches and wheelchairs, I started to invite friends for coffee at mine more than going out and I explained this was because of my pain and fatigue.  Again, some friends weren’t as on board with this as others but I feel like all you can do is explain the situation and what you need.  As awful as it sounds, this does mean that you will lose friends, but these are the friends that in the long term you don’t want anyway…

Let’s assume you’re surrounded by loving, well-intentioned people.  How do you want them to react when you are having a flare up or a bad day?  Do you know the answer to that yourself?  Are you expecting your loved ones to be mind readers?  How could you communicate your needs?  The answers to these will be different for everyone and probably different at different times but they are worth thinking about.

I have found a couple of tools that are really useful for me, one I created and the other I stole off a fantastic friend!  I’m going to include them below but before that, here are a few things that have helped me over the years:

  • Discuss flare ups etc before they happen.  Help your loved one to understand that it’s helpful to do x or y or maybe you need them to understand that there is nothing they can do and that it will pass and you just need quiet time.
    • Create a flare up plan and share this with them.  I have my troubleshooting a helen guide on my fridge so my care team have a head start when things are bad.
  • Put together a blog post or video which explains your health etc so that you don’t have to repeat yourself over and over again.
  • If you are in the early stages of an intimate relationship, talk, suggest, listen and laugh.
  • Be specific about what you need – even if you don’t need anything, tell your loved ones that.
  • As much as possible, it can help to acknowledge that whatever irritating thing they are doing is because they care about you – “I appreciate your help and I know that you want to try and make me feel better because you love me.  Right now, the most helpful thing you could do is…”  And of course, reinforce the things they do well!
  • The nature of some chronic illness means that your health fluctuates and this can be really hard for other people to get their head around.  You might find the spoon theory helps them with this.

The two tools I wanted to go into more detail about are the 8 o’clock rule and troubleshooting a helen.

A close friend of mine uses the 8 o’clock rule with her family and friends and it’s a really good way of saying I love you but you need to leave.  The following is information I gave to each of my carers for whilst I am on the pain management programme:

The 8 o’clock rule is designed as a way of saying you need to leave or have people leave because you are tired or in pain or at risk of overdoing things etc.  You are saying to people “I care about you, I’ve enjoyed myself but I need to be alone now”.

If you say “It’s 8 o’clock” it means you need to leave or you need other people to leave.

You can say “It’s getting towards 8 o’clock” as a sign that it’s time to wind things up.

You can also say “It’s 8 o’clock for me” and this means that you are leaving but everyone else can carry on having fun and don’t need to feel bad about doing things without you or feel they need to break up the fun.

If I say it’s 8 o’clock whilst we are in London then it means I am in pain, I am tired and I need some time alone.  There isn’t much you can do for me except check if I need medication or anything to eat or drink.  I might also tell you to be quiet. Neither of these mean you have done anything wrong, they are about me not you.

When I am in a lot of pain or very tired, the last thing I want to do is tell someone that as their concern for me often results in tears.  When I worked, I got round this with my manager by sending him a particular emoji on our work messenger system.  He knew this meant it was a bad day and so it was then easier to ask later on if I could leave early or take a five minute break.

Troubleshooting a Helen was something I pulled together because when I am in a bad place, flare up, whatever, I often forget what it is I can do to feel better.  When I have a cold, it takes someone else pointing out to me that I can try lemsip or paracetamol.  For me it also means the carers understand there are different responses to different situations or different types of pain.  My troubleshooting guide covers pain, fatigue, mental health, migraines, colds etc.

To give an example, the pain section asks:

  • Where is the pain?
  • What kind of pain is it?
  • Have I overdone things?
  • Have I missed medication?
  • Options to help me: medication, heat, ice, splint, pressure, rest…

Obviously everyone will have different needs which will be met in different ways but even if I only ever used my troubleshooting guide myself, I would still have benefited enormously from it.

As with all humans, relationships and the people around us are very important to our wellbeing and for those of us with chronic illness, they can really affect how we feel about ourselves and how we respond to our pain.  They can also be really valuable tools to help us manage as best we can.  And at the end of the day, our loved ones don’t want to see us suffer if there is anything they can do.  But they also need guidance and if there is nothing they can do, they need to know that as well.  It seems to be that when people start guessing, that’s when the problems arise.

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.

IMG_20180429_102323_322.jpg

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

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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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.

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What strategies do you have?