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.

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I’ve lost my edges…

There is a note in my diary reminding me that I want to write to Oh Comely!, a magazine which inspires hand written, decorative notes not personalityless emails.  The note says I want to respond to something I read and tell them about proprioception.  But the note is possibly a year old now and I have long passed the issue on to a friend.  All my magazines are passed on, turned into collages or left in public spaces for strangers to discover.

proprioceptive: Relating to stimuli that are produced and perceived within an organism, especially those connected with the position and movement of the body.
Example sentences
Origin: Early 20th century: from Latin proprius ‘own’ + receptive.

Oxford English Dictionary

Proprioception is the sense of where your body is.  It is how you know where your arms are when the lights are off.  How you can walk without having to constantly look at your feet.

If you have a huge growth spurt, your proprioception can be temporarily impaired which is why we see clumsy teenagers who don’t seem to fit in their body.  That said, for most people, most of the time proprioception just ticks over in the background.

For people with certain conditions, including EDS, proprioception doesn’t function as well as it should.

I wake in the night, slowly coming back to myself from my dream world.  Before I can rouse myself enough to move, I lay still, figuring out my body.  I may not have an arm right now for all I know.  I’m trying to puzzle out where my left hand is.  I know there is a hand on top of a hand because of the feedback from my splints.  I’m awake enough now to summon up the energy to move that arm which may no longer exist.  How I can move a limb when I don’t know where it is boggles my mind.  It doesn’t take too much movement before I figure out where it is and my arm reattaches itself to my body map.

For me, this is not an unusual night.  My sense of where my body is is not consistent.  Some days I have a better idea than others.  To someone not used to it, waking up “missing” an arm might be scary, for me it’s normal and I can quickly reattach it.  I can’t always put my two fingers together, end to end, without looking.  There are certain muscles that I can’t tense because I can’t find them in my mind to send the messages.

My sense of myself seems to be less when I’m ill, when I’m tired, when I’m hormonal or worried or other states of vulnerability…

Perhaps the hardest to understand and hardest to cope with is when I “lose my edges”.  This mostly happens to my legs.  It is like I am spilling out into the world.  I no longer have skin containing me.  I have no boundaries.  I am the universe and the universe is me.  And I find that terrifying.  When I lose my edges, I kick my legs a lot, I fidget, I bang them against my bed.  I feel out of control and I feel unsafe and unsecure.  It feels like my nervous system is out of control pr non existent.  It is trying so hard to find my body that it is in overdrive.

Returning to the idea of a mental body map, I have lost the structure of my legs.  I know my legs are there and I have a vague sense of where they are but I don’t have any sense of where they end.  My body map, like the rest of me, has gone floppy and nebulous.  I merge and meld with the universe and it is terrifying.

One of the reasons this is so tough for me is that it feels a lot like the physical aspect of a panic attack or an asthma attack – the disconnect from your body that you experience when you aren’t getting enough oxygen.  The very feeling of this is enough to trigger an anxiety attack and it has taken me years to figure out that losing my edges and panic are not the same things, they just feel incredibly similar.

I don’t want this just to be a post trying to explain the sensation, although there is value in that alone.  I want to suggest my own ways of dealing with this in the hope that someone else can benefit.

I don’t have many ways of coping and would love to hear from others, but here we go:

  • There are some ideas on my post about grounding, including telling myself out loud that I am safe
  • A visualisation where I mentally wrap bandages around all my body, bit by bit
  • Blankets wrapped around me
  • Rubbing my limbs with hands, lotion or hairbrushes, anything to re-establish the boundaries
  • Stretching or, when possible, using weight based exercises to help eg arm curls with tins

More about proprioception:

International Tarot Day

Whoop!  I can’t believe I have only been into tarot for eighteen months or so.  It feels so much longer (in a good way).  As I’ve talked about before, I find them such a useful tool for self reflection and getting to know myself and hear myself.

I saw a post somewhere recently about why having a question in mind is important when you go for a reading.  For me, this is such a useful thing in itself.  It helps me clear my head, focus on and whittle down what it is that’s going on and in part, this is a helpful tool in itself.  To ask a question, you have to have a vague idea about what you’re feeling or thinking after all!

 

Ways I’ve been enhancing my understanding of tarot and deepening my readings have included guided visualisations, using oracle cards alongside them and looking at the astrological symbolism.

Each card has an astrological link and I’ve found these a helpful way to see further into the card.  There’s a lot of in depth info over on Virgo Vault (which goes way beyond my basic astrology knowledge but is still clear enough that if all you want is the sign, or sign and planet of a card, you can).  Labyrinthos has some nicely portrayed info about the Major Arcana.

I also use my tarot cards to do readings for, and to help me understand, my house of helens on a group and individual level.  And I have used them to kickstart story ideas.

A few posts on tarot you might want to check out, in no particular order:

The Chariot

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Please see the intro post first!  You may also be interested in my post about how I work with my house of helens.  If this is something you’d like to know more about, the approach I have developed is similar to psychosynthesis.

Whilst this post is a deeply personal reflection on my inner chariot, I am sharing it as some of this will be useful for tarot readers and for those of you who aren’t, it might provide some thinking points for reflecting on your own inner warrior.

“I know building a relationship with my inner warrior is important for me to work on. She is confident and surefooted. I feel I can trust her judgement and that it will be clear”
– Me, 2016

“Warrior of the heart, deeply rooted in love and fiery passion for life. She is aligned with truth; she fiercely rips away your masks and pretences; that which is not in service to love is exposed and brought into question. She is wide awake, totally alive and brings fire medicine, through our bodies, to awaken us to the present moment and the authentic action needed to realign us with our own truth and spirit. She has been demonised by the patriarchy which lives inside us all and so, to some, she may induce fear and loathing: if we are not safe with our own power then her power threatens us. There is truth in her demonisation because to suppress any energy so totally will only cause it to become distorted, like a ‘demon’ who wants attention and healing to be restored into balance. We might get burnt a few times while we tame our dragons but, if we lock them in a cage, they might just burn the whole house down.”
– Tabitha Chambers

The Chariot is associated with Cancer, the crab, and as such carries with her some of the traits of that sign.  In particular, and important to me, is the dual aspect of her.  She has a hard, tough shell which she shows the world but inside that she is vulnerable and loving and emotional.  She is a fighter, appearing emotionless and fierce. She is gentle and her heart overflows with feelings and yet these are pushed down so she can fight on and on until she burns out. She is intense and courageous and protective. The walls she puts up to go to battle can become permanent if she is not careful.  Remember to put down the shield from time to time, you cannot fight well if your arms are tired.

She is a warrior, a campaigner, an advocate, a world changer.  She is a powerful, potent, empowered creature who owns her sexuality.  She is wild, courageous and wilful.  She pushes against injustice and uses her strength to help others.

She needs to remind us over and over: Do not lose yourself in your passion for helping others.  And be cautious about over helping or over nurturing.  She means well but the Chariot is prone to stiffling, she feels it is easier to do the work herself, she wants to help but in doing the work for others, she robs them of the chance to develop those skills.  Empower but don’t takeover.  Run like the wild horse you are, but don’t drag others along with you.  They will journey if they decide it is right for them, and if they do, it has to be in their own time.  Take time to understand whether you run from something or toward something.  Whilst you are filled with forward focused momentum there is still time to pause.

She is determined and single minded and this can lead to a blinkered view of things.  Her intense focus on the task at hand can cause her to lose touch of the other things she values.  This can include neglecting her personal relationships which she doesn’t intend to do but her drive overpowers her and her cause is all she can think of.  This is another reason she is vulnerable to burning out.

She knows she must understand herself and explore herself before she can know and explore the world.  Until she has done this self development, she cannot be her most powerful when it comes to changing the world.  And she thrives on these focuses, self and world.  Without this direction, her overflowing power becomes something that controls her rather than her controlling it.  Without a project, she loses her sense of self, her empowered nature and becomes impatient and frustrated and lashes out at those around her.

She goes into battle for her chosen causes so that she can bring love to others.  She is a war goddess and she is a goddess of love.  She holds both, intertwined.  If you look at the Rider Waite Smith tarot card, you see the charioteer is steering two horses, perhaps one is war and the other love?  Other explanations have suggested one is the inner self and one the outer self which ties in neatly with the cancer metaphor.  Similarly for the conscious and subconscious minds.

“This is not a warrior of the fearless kind but rather a deeper feminine warrior who feels fear and can meet it. She is able to experience all emotions in their purest form, bringing them through her heart in service to love, no matter how difficult. Fire burns in her psyche, aiding courage and bringing clarity to her thoughts, actions and words – she knows when to say yes or no, defining and protecting her boundaries, creating a safe structure to support the phases to come. Warrior woman is responsible, she keeps her commitments, she creates life for us based on freedom of choice, she stops us from taking and enduring other people’s nonsense, she gives voice to our truths and she connects us to the earth through her pure wild nature.”
– She Who Knows

If we look at her in context, she follows the lovers card.  Where the lovers are pulled by their emotions, their lusts and their desires like adolescents in the midst of hormones, the chariot controls her emotions.  Controls instead of being controlled by.  But after the Chariot comes the strength card.  Strength is neither controlling nor controlled by its emotions.  He is in harmony with them.  He feels them and releases them. He is the mature figure in emotional development.  We must remember that controlling our emotions is not the final stage of our journey.

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Many of the traits of my imaginary chariot are akin to those found in the wild unknown animal spirit horse card.  A card which closely resembles the chariot card.  Like the horse, my chariot cannot be tamed.  She cannot be controlled.  She will help me and she will work with me but she will not work for me.

How I work with my house of helens

Please see the explanation post to understand what my house of helens is.

Ok, so there are five helens and a cat living in the house of helens:

  • little helen, a young girl who is probably about 6 who likes playing outside and getting dirty.  she is the youngest member of the house but she has her own voice and is listened to and respected by all.
  • hennie and charlie cat come as a duo most of the time these days, she is older than little helen.  she’s had a tough life and is quiet and is slowly learning to identify her needs and try to meet them.  she loves reading and writing and is slowly gaining in confidence.
  • chariot, the warrior of the house, is confident and sure of herself and is the activist, the campaigner, the advocate and the fighter.
  • big sister is, as you might expect, a big sister type figure.  she first made herself known when little helen was dealing with some big and intense and painful stuff.  she is there in hard times and there for fun times.  she has a maternal nature and does a lot of the tea making and cake baking in the house.  she loves nature and has a lovely herb garden.
  • mana, the grandmother of the house for want of a better term. often she is quietly going about her business in the background, helping things run smoothly with a kind word here and there and a hug or a kiss.  she first came to me in a dream and was the archetypal ancestor as angel type figure.

So that’s a quick run down of the gang.  I wanted to share that to make it easier to talk about how I work with the house of helens.

Check ins

One of the main things I do with my house of helens is check in with them.  I aim for once a week but sometimes more, sometimes less.  To do this, I close my eyes, take three deep breaths and as I take them I visualise walking through the gate, up to the house and through the front door.

When I haven’t been to see them for a while, there is a part of me which gets scared no one will be there.  But so far, its never happened.  That said, when I didn’t check in for quite a while, I did have to deal with the fallout and the hurt feelings that caused.

So I go in through the door and I don’t know what I’m going to find.  Quite often there is someone in the kitchen and I might have a cup of tea with them and a chat.  If there is something in particular on my mind, I might seek out a particular helen and see how they can help me.

Sometimes I turn up and they’re all in the garden.  Other times I’ve arrived only to find them in the attic.  One occasion they were in the middle of a film night (their time zone does not run in sync with ours!).

When I was being sick a while back (I hate being sick), I went in and curled up by the fireplace in the kitchen.  Little helen gave me a little hug before going back to whatever she was doing.  Mana wrapped me in a blanket and stroked my hair.  Big sister went and got some herbs and made me a healing tea.  Hennie hung round the edges, afraid but not sure why.  We managed to chat a little and she was scared something was going to happen to me even though she knew I just had a bug or something.

What the helens do is not guided by my consciousness and that is what I find most powerful and helpful about this practice.  It taps into my unconscious which has a much better idea about what might be bothering me and how best to remedy the matter.

One to one

Recently I’ve been doing some one to one work with my helens.  This is where I intentionally seek out a particular helen and we talk and get tot know each other better and look at their strengths and weaknesses and their skills and interests.

With most of them, this is currently being guideded by Jailbreaking the Goddess by Lasara Firefox Allen.  The book shifts goddess work from the traditional trinty- maiden, mother and crone – to a five pronged version which isn’t build around maternal status.  Helpfully for me, there are five helens and they fit quite neatly into her five faces of the goddess!

Before doing this work, we had a house meeting and talked about whether people wanted to take part or not and what their hopes and fears were.  Big sister went first, mostly so she could see how appropriate it would be for little helen.  Hennie is not currently ready but was worried about missing out.

With Hennie, instead of jailbreaking the goddess, we are working through some stuff around attachment.  I went on an afternoon course about it a while back and she found it really interesting and relevant to understanding herself better.  This is intense work and although we are both tempted to rush through the material we’re using as a guide, we know that is not the best approach.

The same is true for jailbreaking the goddess.  It’s a great book and I want to read it all now but I need to work at the right pace for the helen in question.  And we need breathing space and reflection time.  And I need a gap between each helen so that I can honour them better.

Asking for help

The other main way I work with my helens is to draw on their strengths for certain things in my life.  The most potent example I have is when I went to my ill health retirement interview.  This was going to assess how much of my pension I was entitled to based on whether the assessor thought I stood a chance of working again.

This was intense, life changing stuff and I knew I had to be strong and clear about my illness.  Which is hard because we tend to spend our whole life minimising its impact.  I had to give the assessor an accurate and detailed picture of my life, down to intimate details.  I had to explain to a stranger, coherently and persuasively, that I will never work again.  Despite only just starting to come to terms with the idea myself.

So, the night before, I sat down with the chariot and we talked about how we wanted the interview to go, what strengths I needed to use and what approach we wanted to take.

I went into the interview more confident because of that and when I came home afterwards, I went into my house of helens and collapsed at the kitchen table.  The chariot was no longer the helen I needed most and big sister took over with tea and little helen danced and revitalised me a bit.

Other

I have also done tarot readings with them, as a group and individually.  I have done a couple of pieces of art with them.  I use them as a means of talking to my carers about stuff in a way which feels less vulnerable (most of them know about the house of helens).  They are slowly revealing their own birthdays to me so that will be something we will celebrate in the future.  This year we shared a birthday and I lit a specific candle for each of them and we had cake.

As I said in my last post on the house of helens, I’d love to know if anyone else does anything similar.  I know a lot of people do inner child work and it’s sort of related but also not…

My house of Helens

This post came out of the desire to write another post.  I was trying to combine them but it was getting rather epic and unfocused.  This post will also, hopefully, help me to talk about my helens with people which is something I find hugely helpful.

I think I’ve mentioned my imaginary Helens on here before but I can’t find the post and I don’t think I went into much detail.  Essentially, whilst I was in therapy, I “found” a younger version of myself and we worked with her around some stuff.  Then along came a big sister character followed by a maternal, matriarchal figure, Mana.  Then my inner warrior, who was incredibly burnt out, made herself aware to me but didn’t want to see me because I had overused her.  This was the chariot.  After therapy, I also found an older younger version called Hennie and she has a cat called Charlie.

I’ve been doing a lot of work with them on a one to one basis recently and I feel I have a lot stronger sense of Little Helen, Big Sister and Hennie.  But the Chariot and Mana still feel a bit distanced.  As I said, the chariot burnt out in terms of fighting.  This was the result of a long time of trying to get a house, trying to get a wheelchair, trying to get mental health support, trying to get work to become accessible and so on.

Each helen has a tarot card I associate with her and this has been helpful in terms of getting to know them and letting them speak through tarot.  The main reason for this post is just to give some background before I post about the chariot.  I tried writing it just for me and her as a way of getting to know her better but I do write more cohesively and coherently if it’s going on my blog…

Whilst my post will be deeply personal, it will also touch on elements of the relevant card and archetypes which I hope will be relatable to most people.  Even if you don’t have an imaginary helen in your head, you probably have a vague sense of an inner warrior or an inner child etc.

I know this is a very specific way of approaching personal development, self care etc but it really works for me.  I’d be very interested to know if anyone else does anything similar.  It all revealed itself very organically and in a really empowering way.  And continues to do so.  Like any relationship, it is necessary for me to slowly get to know them, to let them reveal what they are ready to share when they are ready.

Nothing I do with my helens is fully conscious.  For example, Hennie was struggling a lot to identify her needs, let alone try and get help meeting them.  Then one day I checked in with my house of helens and charlie cat had wandered into her life.  This is proving to be a really good way of helping her understand that it is ok to get your needs met, helping her identify charlie cat’s needs and hence her own and helping her learn how to ask for help.  If I had consciously sat down and tried to plan that, it wouldn’t have worked.  The same goes for the initial concept.  Had someone, a month before, told me I’d be working with imaginary helens as part of my therapy, I wouldn’t have taken them seriously…  I was really lucky that my excellent therapist went along on the journey with me, not pushing me into it and not pulling me away from it.

#30dayswild

This month is the 30 Days Wild challenge.  The idea being that you do something wild every day throughout June.

What is a Random Act of Wildness?

A Random Act of Wildness is about making time to connect with nature around you, or doing something small yourself to help nature. Random Acts of Wildness are all about experiencing, learning about and helping your local wildlife. They can be simple, small, fun and exciting too.

The Wildlife Trusts running the challenge have their suggestions about ways you can be wild and are tweeting about it.  I love the idea of it and a couple of years ago I tried to challenge myself to notice three nature related things each day.  I liked the concept and I like the awareness but when you spend most of your life in your flat, it can get tricky to find new things.

My health is being more rubbish than normal right now so I’m stepping into this challenge very aware that I may not meet it every day and certainly won’t look like people’s idea of being wild in nature.  Part of the process for me is about getting back to basics and looking at what I can do, not just what I wish I could do.

For example, right now there is a woodpigeon cooing and I know it’s a woodpigeon and I love that I can tell it from it’s call (I’m not good at bird identification let alone birdsong identification).

I’ve been really pleased to see others on twitter taking a similar approach.  @porridgebrain tweeted that her “contributions will be very small and ordinary and probably only a few feet from my house.”  She also mentioned the perception of what a nature person should be and how if you aren’t doing x, y or z then you aren’t doing it right. And this is something I’ve picked up on as well.  There’s a lot of narrative about how you need to sit still quietly on the top of a hill with binoculars and no electricity pylons in sight before you earn the nature badge.

Jo Southall is another person who is focusing on doorstep nature.  She has some of the same health issues as me and I really admire the way she does get out into the more traditional wild but how she also pays attention to what is right in front of her.

I have written about nature and disability before and would love to get your ideas about ways of connecting with nature when you have limited mobility or can’t leave the house.

Why am I rambling about nature so much?

Connecting with nature when you’re stuck in the house

Connecting with nature when you have limited mobility

My hope is to collate my #30dayswild into a blog post at the end of June as a way of sharing my ideas and showing how I bring nature into my life on a regular basis.

Day one: I saw a huge bee exploring my bird feeder which was exciting because no birds have been by… It’s been up for a few months now and I think it’s just a bad location but I don’t have a better one for it. I had the window open so despite being stuck in bed, I was able to hear the birds. I also emailed various organisations about disability and nature (I’ve been meaning to for a while) to ask for their suggestions, recommendations and to see if they could share my blog posts.  And I wrote up some long overdue reviews on euans guide:

And my copy of BBC wildlife magazine arrived!

Day two: Using the magic of the internet, I identified a blackbird from its song that wafted through the open window.  As I said above, I don’t really know any bird calls and I’d love to learn more.