What is place?

Where lies your landmark, seamark or soul’s star?
– Gerard Manley Hopkins, 1886

Of course, everywhere is a place in the very traditional, dictionary definition sense, so what I am talking about here?  This month I plan to consider sense of place, placelessness, space and landscape whether that is urban or rural.  At the heart of this is the human connection with somewhere and the emotional relationship to a specific site but I shall begin by exploring a few words and phrases.

Place

Place can mean different things depending on context but the definition most relevant here is “a particular position, point, or area in space; a location.”

You’ll note here then that there is an difference between place and space with place being a part of space.  Space exists without humans to mark it or claim it or know about it, whereas place is a human filter on that space.  Milan Kundera uses the examples of highways being spaces and roads being places, roads have meaning and associations where highways tend not to.  It is imaginative possibilities, cultural histories and stories which help to turn spaces into places.  The difference between house and home might be something to lean into to try and grasp the intangible nuances here.  Similarly, we invite people back to our place, not space.

Lawrence Buell defines place as “a space that is bounded and marked as humanly meaningful through personal attachment, social relations and physiographic distinctiveness” and it is these aspects which can create a sense of place.

Sense of place

The term sense of place refers to a quality of characteristic that some places have and some do not.  It might be a feeling or perception that people have of the place rather than something inherent in the place.  It might be unique characteristics which make a place feel special and which create a sense of belonging in the human who is experiencing sense of place.  There is a sense of meaning in the place, it might be memories for example.  Sense of place, feeling intimately and personally connected to a place can foster a sense of belonging.  And it is important to note that a sense of place doesn’t always mean it is a positive experience.  Negative sense of place also exists.

Spirit of place

Spirit of place is similar but seems to be more focused on positive aspects of a place and goes beyond the personal experience to include the celebration of place in folktales and festivals.  It is a meeting of culture and the physical.  It may be created from stories, art, memories, folklore, pathways, rivers, woods, the presence of family and friends and the history of the place.

There seems to be a convention that sense of place applies to urban landscapes whereas spirit of place applies to rural spaces.  Personally, I don’t feel that we should, or can, create a hierarchy of place – if spirit or sense of place is an emotional, felt experience, then how can we distinguish between the two.  If you were to talk about a garden in a city, would that be spirit or sense?  I will probably stick mostly to sense of place for no other reason than consistency.

Local distinctiveness

Local distinctiveness is a phrase used by Common Ground to capture the “particularity in the buildings and land shapes, the brooks and birds, trees and cheeses, places of worship and pieces of literature. It is about history and nature jostling with each other, layers and fragments, old and new. The ephemeral and invisible are important too: customs, dialects, celebrations, names, recipes, spoken history, myths, legends and symbols.”

Genius Loci

Sometimes genius loci gets used synonymously with sense of place but there is a distinction.  This phrase from ancient Rome refers to the protective spirit of a place, often a guardian but in The Somnambulist by Jonathan Barnes we find a negative genius loci:

“He could feel the weight of the past pressing down upon him as he walked…He found himself recalling the notion of genius loci, that fanciful conviction that a place itself materially affects the individuals who pass through it. If this place had any tangible effect upon its inhabitants then it was surely a malign one.”

Placelessness

Implicit in the idea of sense of place or local distinctiveness is the idea that not all places possess this magic quality.  Whatever language we are using to attempt to capture this feeling or relationship, to put it in words as existing implies the lack of existence or it would be enough to call a place a place as sense of place would be tied up in the word.

Places that don’t have a sense of place are sometimes called placeless or non-places.  Gertrude Stein’s quote “there is no there there” feels like an appropriate description.  Examples of places without sense of place may include shopping centres, supermarkets, chain stores or chain restaurants.  New housing estates often feel like the lack a sense of place and even some tourist attractions have been criticised because over commercialisation has lead to the loss of sense of place in the eyes of some people.

Because sense of place is such a personal thing, I don’t think you can automatically rule out certain types of place as being without sense of place – if you have powerful emotions about a particular branch of chain of restaurants eg it was where someone proposed to you, then you may experience a sense of place there.  That said, there are certain qualities which make some places more likely to have a sense of place – local features, use of local materials in buildings, a strong local culture, historical stories and something unique about the place.

Landscape

Any discussion on place will inevitably come to landscape at some point and again the definition of landscape isn’t as easy to pin down as you might think.  Annie Proulx argues that:

Landscape is geography, archaeology, astrophysics, agronomy, agriculture, the violent character of the atmosphere, climate, black squirrels and wild oats, folded rock, bulldozers; it is jet trails and barbwire, government land, dry stream beds; it is politics, desert wildfire, introduced species, abandoned vehicles, roads, ghost towns, nuclear test grounds, swamps, a bakery shop, mine tailings, bridges, dead dogs.  Landscape is rural, urban, suburban, semirural, small town, village; it is outports and bedroom communities; it is a remote ranch.

As with sense of place, landscape goes beyond what is tangible and physically present.  There are elusive hands which touch and shape how we experience landscape.  There are the physical, geological elements, the plants and animals which live there but land is a map through time of human influences.  Traces of human history can be seen in managed forests, coppiced trees tell stories and shape the land.  Further, how we see the landscape depends on our history, on our values, our religious beliefs, our political affiliations, our professions even – a forest changes simply by being viewed by a timber mill owner.

This month I’ll be looking at how these concepts of place, sense of place, placelessness and local distinctiveness have been used by writers in novels and poetry and how these portrayals have changed.  I will also be trying to create my own alphabet of local distinctiveness and thinking very local in my own creative writing.

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Winter Solstice, or Mana’s Birthday

We’re back to my house of helens, see previous posts for context:

This time it’s Mana’s birthday.  She is the materal or grandmother figure.  She is not a helen I know that well yet.  She is sort of there in the background watching and offering hugs and nudges where needed.

Today, to celebrate her, we will be lighting a candle as the longest night begins and offering her hugs and kisses.  There will be yummy tea drunk by a roaring fire.  Stories will be told.

We will thank the sun for returning and thank the darkness for the chance to reflect, to restore, to rest.  This has been a really important part of my change in perspective of winter, that is to honour the unique and vital aspects of the darker time of year rather than just berating it for existing.

Alone, myself and Mana will do a tarot reading.  One fitting to her wisdom and knowledge as well as the time of year.  It will reflect, pause and look to the coming light.

Whilst this is a post about the house of helens, I also want to make it relevant to my nature and writing project so I’m sharing some things I have found or know about winter solstice, the longest night of the year.

During the winter solstice, the north pole is as far away from the sun as it can get.  This means that at the same time the south pole is as close to the sun as it can get and the southern hemisphere celebrate the summer solstice.

The word solstice comes from Latin sol “sun” and sistere “to stand still.”

There are numerous stone monuments which are configured in such a way as to show when it is the solstice.  Whether they were built for this purpose is a matter of debate but given how important the passing of the year would have been for our ancient ancestors I think it’s a strong possibility.  If you live in a time when farming and hunting are your lifeline, it’s going to be very reassuring to know that the shortest day is here and from now on everything is going to get easier.

For the Mayans, the sun was incredibly important as it allowed them to create their complex calendars and “entire ceremonial complexes that were positioned specifically for the celebration of the solar cycle”.

Around the world, people celebrate the winter solstice. China’s Dongzhi (literally “the extreme of the winter”) Festival celebrates the winter solstice, along with the imminent return to longer days. At the ancient ruins of Stonehenge in England, thousands gather before sunrise to celebrate. In Japan, some partake in a traditional hot bath, soaking with a Japanese citrus fruit, called yuzu, to greet the winter solstice while protecting against common colds.

Futurity

Whether you mark the solstice or not, I hope you have a lovely day!

December: A pre-introduction – coping with the weather

The darkness has arrived.  It is engulfing us.  And it is crushing some of us.  Winter can be a difficult time for some of us, for our mental health and our physical health.  Winter weather can restrict and isolate us.

Before I get onto this month’s topic, I want to say a bit more about how I am currently thinking about winter this year.  In the past I have battled against it, I have set myself up to fight the winter.  This has involved SAD lamps, meal plans, cooking and freezing in bulk and late winter holidays to sunnier places.  But I was constantly on the defensive and to be honest, my success was limited.  I would still get to the end of winter having faced worse depression and increased physical pain.

Then last winter came and it was my first winter not working and so I wasn’t going out and seeing people and wasn’t feeling useful and so on.  All great things for your mental health.  In addition to that, most people I knew were working full time and I can’t go out in the rain on my own because I can’t put on my own wheelchair waterproof.  On the whole, these things are still the case.  I do now know people who don’t work which is good but I still can’t go out in the rain without help and the cold is bad for pain and the dark is bad for mental health.

Then, last Christmas, an amazing friend of mine gave me the wild unknown animal spirit deck.  And shortly after, I started my blog series, looking at each animal more closely and getting to know them.  The first card was the bear.  And it was one of a few things that really transformed my approach to winter.

Instead of battling, the bear teaches us to go with the seasons, to let the rhythms flow with us not against us.  We can embrace the urge to hibernate, as long as we balance it with more active times in the spring and summer.  I’ve already repeated a lot of the bear post in many other posts so I’m not going to talk much more about it, but I do recommend looking at it.

Along with the bear, I was also finding I was reading about the necessity of the darkness.  The need to have space and time to go within ourselves and to nurture ideas and seeds which aren’t ready to be externalised and made vulnerable.

Some of what I was reading was talking about changing the way we think of darkness.  It is not the absence of light, but something immensely valuable in itself.  Without the dark, we cannot see the moon, we cannot see the stars and we do not appreciate the light.  This is a time of rest, of restoration, of recuperation.  A necessary part of the year.

But of course, the winter can feel long and this is why we have festivals and celebrations.  December has long been considered a holy month, holding as it does the winter solstice and later the Christian Christmas as well as Hanukkah, and various other feast days.

Links

Insert your own swallowing pun here

trigger warning for anorexia and eating disorders

So, having developed POTS earlier in the year, I now find myself with severely worsened swallowing issues…

Partly this post is so I don’t have to repeat myself but partly it’s also a grumble.  EDS is the gift that keeps on giving.  And just when you’ve got used to one new symptom, bang, there’s another one.

The health issue

I’ve had trouble swallowing for years but never particularly severely.  Mostly it’d be a feeling of a lump in my throat or difficulty swallowing saliva.  Then a year and a half ago I started having trouble with tablets coming back up.  Not often so it took a few months till I went to the dr.  She tried me on PPIs thinking it was silent reflux.  They made it a lot lot worse.  I went from bringing up tablets once a week to once a day. And it didn’t matter what shape or type the tablet was.

I was then referred to ENT.  By the time I saw them I’d managed to regurgitate a lot of juice in the middle of the night, a scary time.  ENT then stuck a camera up my nose and declared there was some redness, probably from silent reflux.  They gave me a really awful printed advise sheet which was full of common sense and nothing I wasn’t already doing…

Then came an appointment with a lovely speech and language person who declared my swallow is slow to get started and a bit weak.  She couldn’t help me with regurgitation issues because the speech and language team only deal with things going down.  She looked into what to do next with me.

Somewhere along the way I also had a barium swallow test which came back fine.

Then, two months ago, I woke up one morning and everything fell apart.  Suddenly I couldn’t swallow most foods without regurgitation, my tablets became a battle and even some drinks flew out the window.  What I have been left with is a strange menu of small portions of dairy free cauliflower cheese (cauliflower cut up super small), gnocchi and grated cheese (but only 8 pieces of gnocchi…) and ice cream.  Up until recently I could do white chocolate buttons (lower melting point than others), only 4, but that seems to be too much now.  I could also do apple juice if it was watered down by half.  Now I’m on a third apple juice to two thirds water and struggling.  I can do lucazade if it’s watered down with lemonade.  And I can do wine, which is probably not a great idea on the amount I’m eating but it’s also probably the main reason I’ve not lost more weight than I have…

I have gone from eating vaguely normally to an amount my anorexia likes and I have gone from drinking 6+ litres of fluid to less than 2 and my salt intake, which I need for controlling the POTS has inevitably dropped drastically…

Thankfully I had a gastro appointment six weeks into the troubles and the dr has been really helpful, or at least he listened well and took note of what I was saying.  Unfortunately there aren’t many options.  I’ve just tried one medication which hasn’t helped, may have made things worse and came with weird side effects.  I’m waiting to hear about a second med he wanted to try but it is a long shot.  And he didn’t want to talk about what happens after that…  Based on the options he ruled out, I can’t see anything other than feeding tubes ahead… Which is a hard thing to think about.

The social issue

A lot of socialising revolves around food but also, right now, i don’t have the energy or the mood to be people-ing much… which i also know is going to make my mood worse…

None of the foods I can eat are any good for eating outside the house because they either aren’t available or need cooking.  This means on the full day course I did recently and the day trip I took, I’ve had some nibbles of cheese, four buttons and glucose tablets to get me through.

There is also the aspect of having to repeat everything to people when I see them and having helpful suggestions made.  Which brings me onto my care.

The care issue

I know that my carers are doing what they’re doing primarily out of concern.  But they keep suggesting foods I should try, asking if they can tempt me into breakfast and telling me about the meals they’re going out for.  Some of this is because it’s hard to know how to help, in fact they can’t help, but some of it is thoughtlessness.

I have placed a huge sign in my kitchen asking people not to talk to me about food or my swallow unless it’s necessary or I bring it up – it seems to be being ignored…  Yes, I do want to grumble to my care team now and then as it’s a horrible situation and I’m annoyed.  But I don’t want to be asked if I’ve thought about soup/custard/blended food, especially when I’ve already explained that I can’t.  And I definitely don’t want to hear the details of your Christmas dinner, because mine is likely to suck.  Literally.

The mental health issue

And of course, within this all, we have the anorexia.  Which was in a good place mostly.  And I think anyone’s mental health would suffer in this situation.  Firstly, I’m not getting enough food and that’s bad for your mind, I’m not getting enough sleep either and I am so bored of the few foods I can eat.  Plus I’m really craving salty foods and cravings are tough to deal with.  And my only real experience of beating down cravings is anorexia…  When I am not experiencing disordered eating, I don’t limit what I eat or when I eat really…  Which actually reminds me that I’m not fully recovered from the anorexia because there are still lots of foods I won’t eat or aren’t comfortable with and I do limit quantity.

So that’s all fun, right?  I’m going to balance this out with a blog post about a new pretty oracle deck in a few minutes!

A birthday in the house of Helen’s

Check back at other posts for context:

Coming up this week is the birthday of one of my Helens.  Hennie, the teenage-ish version who has a cat called Charlie, is the quietest and shyest of the house.  She has had a tough past and struggles a lot with identifying and meeting her own needs and is still getting used to being in a house full of love.  That’s all I’m going to say about her, she’s very private and wouldn’t like me much if I said much else.

However, she has no problem with me sharing a bit about how we’re planning on celebrating her birthday.  She is a Scorpio which places her birthday anytime between October 23 – November 21 this year and as I’m a pisces we figured we’d go for the time when the moon is in Pisces, that is 29th to 31st October.  This year that means we’ll be going for Tuesday although ideally we’d have avoided Halloween…

When we first started talking about her birthday, she was clear it was to be a low key event, not surprisingly.  She wanted a bonfire, herbs burning and poetry.  Ideally outside and with only people she felt really comfortable with.  A bit more chatting and she thought maybe storytelling would be nice too, hopefully the story of Ceridwen.  And a private tarot reading, just the two of us.

How this translates is not always an easy matter.  I can’t have a bonfire for example.  But we’re having candles, incense and mulled wine or mulled apple juice.  Ideally there would be lots of nice autumny food as well but I’m having trouble swallowing at the moment…

Whilst this isn’t a Samhain celebration, it does drawn on elements of the fire festival.  Hennie inhabits a liminal space between light and dark and can find herself in either very quickly, more so the darkness.  And this has been a darkness that has caused us both a great deal of anxiety and fear which makes this time of year a great chance to transform and reframe it.

Death and darkness are important, they are necessary parts of the cycle of rest, regeneration and rebirth.  As I wrote about in my post on the bear spirit card, we all have periods of activity and inactivity, of light and dark, of external and internal and we can benefit a lot from seeing them both as important and not fight against them.

Instead of battling the darkness, we can use it as a time to dream and ponder and plant seeds for the year ahead.  We can be rejuvenated by this period and be thankful for the space to rest and nurture ourselves and our ideas.

“Increasing darkness and cold means we must accept that winter is fast approaching and we must adjust to this changing season.  Leaves have fallen off the trees, birds have migrated, animals have gone into hibernation, and frosts have come.  It is a time of death and decay, death of the cold, and within this, knowledge of rebirth.  It is a time of forced adjustments that, once accepted, reveal a new set of possibilities, a new phase, a new power to life.” 
– Glennie Kindred

Right now, for me, forced adjustments seem very much present and seem also like they’re here to stay…

We will embrace this time of year as a chance to go into our unconscious self, to heal and to renew ourselves.  To incubate our potential and keep ideas and dreams safe until the winter months are over.  It is a time to go back to our roots, to plant seeds and to accept that life comes from death.

We will be looking at the year that has passed, the gifts it has bought, the sorrows we’ve seen and looking ahead, making wishes and dreaming.

We might use leaves to embody those things we want to let go, burning them as we release the past.

We will be trying to incorporate elder, a plant of regeneration and renewal as well as feminine power.  And apples, as Hel’s apples represent a journey to the land of death and rebirth.  We’ll also be using some spices, cinnamon feels appropriate, a firey spice for the cold winter months and ginger, another firey spice which grows underground.  If my eating was better, I’d be including some seeds here as well.

The tarot spread we’ll be doing will have three cards which will roughly correspond to:

  1. The past, the underworld, things which are hidden
  2. The present, now, material things
  3. The future, the otherworld, possibilities and direction

Wish her happy birthday and I hope winter treats you all well!

Tipping the balance 

Yesterday was the autumn equinox. The day when night is as long as day. From today until March, days will be shorter than night.

Yesterday, I did a tarot reading. A four card draw with no particular question. The cards I drew were very relevant to how I feel about this time of year.

 

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There are two cards, the six of cups and the hermit, which are both about the unseen, about going within, about going underground.  They echo the turning of the season, the way nature is closing in and hibernating and plants are losing their leaves and focusing on their roots.

In a lot of tarot decks, the six of cups is about childhood, nostalgia, naïve happiness, and generosity but this has never been a meaning that has chimed with me.  Instead I choose to look at it from a different perspective, asking myself what fuels me, what brings me to life, what grounds me.  If you look at the image of the tree with it’s multi coloured roots, you’ll hopefully get a sense of what I mean.  Where other people look to childhood memories to make them happy, I chose to look at anything which makes me happy, which feeds my soul.

I love that this resonates with how I interpret the hermit card.  I feel that it’s about taking time out from other people’s thoughts and views and finding out what my own are.  As part of my nature and writing project, for example, I’m doing a lot of reading and learning and watching documentaries which is great and I love it.  But I need to ensure that there is space within that for me to mull over ideas, to form my own opinions and to draw together my beliefs.  We live in a world where we get a lot of external stimulation, we take in a lot of information every day and that’s great.  But we also need to balance it with internal stimulation and creating (in a very loose sense of the word) our own offerings.  We cannot just take from the world, we must also give.

There is also an aspect of balance in the 6 of cups – the outer world of the tree mirrors the inner world of the roots.  This reminds me strongly of the bear animal spirit card and the idea that there is a time for everything, but no time can be a time for everything.  A link I’ve shared quite a bit is one to Terri Windling’s blog post about bears and it feels so relevant here.

For [Terry Tempest] Williams, the bear embodies “opposing views, that we can be both fierce and compassionate at once. The bear is above ground in spring and summer and below ground, hibernating, in fall and winter — and she emerges with young by her side.

The winter months have always been a challenge for me. I love sunshine, dry weather and warmth… now, however, I am learning to appreciate winter’s stark gifts: it slows me down, turns my thoughts inward, keeps me closer to hearth and home, strengthening the introverted side of my nature, without which I couldn’t write or paint. I am learning at last to follow the bear; to trust in the process of hibernation and gestation. I am learning patience. Slowness. Stillness.

All things have their season. And spring always comes.

– Terri Wilding

That all things have their season is a pertinent reminder for those of us who struggle with winter and the darkness.  And this sentiment is echoed in the second half of my tarot reading with the Wheel of Fortune and the frog.

Both of these cards remind us that we live in cycles, like the bear, and we should embrace them rather than fight them.  You feel the turn of the circle more if you are battling to keep it still than if you go with the flow of it.  For me, this means accepting that winter means early nights and less activity and preparing for this.  So gathering documentaries I want to watch and books I want to read, in preparation for days when I don’t necessarily want to get out of bed or leave the house.

And both of these cards, in reminding us of the cycle of life, remind us too that as Terri says, spring always comes.

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.