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Journal

Five good things I've learned from having a chronic auto immune disease

five things I've learned from having a chronic auto immune disease

Last week I met a young man whose partner had just been diagnosed with an auto immune disease. He was worried, stressed, clutching at cures.Someone had told his partner that her life was ruined, that she would never be able to do anything worthwhile ever again.

I tried to tell him that just wasn't true. For me having an auto immune disease has brought many frustrations, I have had to change the way I approach things - but it certainly hasn't left me with a ruined life.

If fact I think in a number of ways it has transformed my life for the better. I thought that I would write some of them down.

I am not my appearance.

Auto immune conditions - and their treatment - can alter your body to the point you no longer recognise it. Weight gain, bad skin, bruising, moon face, hair that falls out in handfuls. It is so swift and erratic that you cannot tie yourself to it - that whole moral weight that women in particular tend to give to their appearance has to be put aside. I may not like having bruised arms, I may roll my eyes if I can't fit into clothes but I never think it is somehow a character failing.

My body is amazing.

My body has several parts that have completely broken down and the compounds that those bits are meant to tailor make to suit my life are now taken in tablet form. I am a jalopy tied together with string, a baked bean can as an exhaust, the wrong grade of petrol in the fuel tank. And yet it goes . . . it splutters a bit . . . sometimes it stops on hills but mainly it goes. When I hear people hating their bodies, beating up perfectly whole and working bodies, usually for some aesthetic 'failing', it makes me want to scream at them.

Becoming a body whisperer.

Having an auto-immune disease isn't simple. Symptoms - even things that look like reactive physical symptoms - are tied to stress and food and tiredness, sometimes they seem to react to the ether. Learning to be aware of how my body signposts potential issues - a flash of blurred vision, a wobbly knee, a sudden stutter - has made me aware of how it flags non physical things too. The dodgy promise, the bad idea, the thing that will compromise my values in return for an easy life. It is a useful trick - to be able to still myself, sink down and take the advice of how I am physically feeling decisions in my body as opposed to my mind. A superpower.

Sidestepping the productivity machine.

In the same way that having Addisons etc. demonstrated my value cannot be in my physical appearance, it also made it clear that my value cannot be my productivity. This is so much the opposite to the current post industrialist capitalist mantra that it immediately flings me out of that system. All to the good. I thank my good fortune daily that the Internet allows me to work and connect in a way that probably wouldn't be physically possible. Perhaps in the past I would have felt cast out onto the scrap heap, now I can simply dust off the tired productivity trap and walk the other way.

Sleep appreciation society.

Sleep, rest, taking it slow, sitting still - these are the things that recharge me. It is a visible thing - you can almost see the lights on the battery bar coming on. I have learned to leave gaps in my day for naps, to value an early night, to wake slowly. Science is catching up with this - the amount of brain repair and consolidation that goes on during sleep. The way that most people sell themselves short.

Asking for help.

I put this last because it has personally been the most difficult, but also because it transforms both my life and that of others. Insularity and independence have somehow become deep rooted into our lives - and the longer that goes on, the more difficult it becomes to begin asking for help. To be the person who says - I am tired, I cannot carry heavy weights, I need help - creates connection through vulnerability. It also, as a side note, creates children who are empathetic, practical and sensitive.

When I was writing out the draft for this post I realised that all these benefits are the very things that we now realise are missing in our busy C21st lives. That perhaps being sleep deprived, productivity machines, judging our appearance harshly, moving too fast to listen to our guts and never asking for help is actually the true chronic disease of our age. Having Addisons disease and CLL changed my life - there is absolutely no doubt of that and at times I have been terrified, frustrated, despairing - but they certainly haven't ruined it.

Comments: 3 (Add)

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Hazel Blue on July 23 2021 at 08:22

I am infinitely in awe of you and all you've your achieved Jane, and so very glad we met at the school gate!

jane duthie on July 23 2021 at 09:37

Wise words indeed. x

Julie Cumming on July 30 2021 at 17:35

A profound and insightful post - should be food for thought for even those who are hale and hearty. Thank you!

Snapdragon social

Every year the sudden sink in light catches me by surprise. ⁠⁠
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Usually I first see it when I fail to take a photo. When I can't get my camera to capture what I want. When all the advances I've made in my photography get swamped by not knowing what to do to make a difference to something so ethereal.⁠⁠
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Yesterday - taking a photo of the Studio windowsill with its seed heads and berries - I hit a problem of grain.  All my images looked dull, in focus but somehow lacking light.  I randomly changed camera settings and lost half the morning peering at a screen foolishly trying to edit light back in.⁠⁠
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In the end I messaged my friend Rebecca @poshyarns - whose photos capture light in the most beautiful way. She called me back and talked me through, and even gave me the confidence to ditch my tripod. ⁠⁠
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And suddenly the light came back into my photos and the murk was gone. ⁠⁠
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If Rebecca ever decides to teach I will be right at the head of the queue.⁠
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#howihueit #simpleandstill #capturequiet #beautyyouseek #calm_collected #aseasonalway #aseasonalshift #cornersofmyworld #slowlived #slowandsimpledays #quietchaotics #ihaveathingwithwindows #ofsimplethings #beautyinsimplicity #floralstories #allthingsbotanical #underthefloralspell #slowfloralstyle #petalsandprops #nestandflourish #livethelittlethings #thehappynow #ihavethisthingwithflowers #moodforfloral #cornersofmyhome #aseasonalway #slowlivingforlife #aflowerfilledlife
Kat @katgoldin took this photo of me a few weeks ago on a photoshoot that consisted of her telling me to 'just do the things you do and ignore me'.⁠⁠
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Despite having been friends for ages, she had never seen me embroider - the buzz and shimmy of the needle on fabric. ⁠⁠
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Sometimes seeing things through other people's eyes helps you see them anew yourself. Kat's joy in the emerging lines helped me see that what I've created here in the studio is a very special and precious thing.⁠⁠
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The doors to the Studio Club - which is basically a seasonal exploration of all that goes on here - open again in a few weeks time.  You can sign up to get a personal invite via my profile. ⁠⁠
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You can see how good I am at 'ignoring' - my face is quite clearly mid laughter.⁠⁠
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This is perhaps a bit of a downbeat photo for my 1000th post. messy faded daisies in the Studio Meadow.⁠⁠
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But I think it pretty much sums up what I hold dear - imperfect, natural, wild.⁠⁠
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Today my elder daughter graduates from drama school (a year late), in two days time my younger daughter turns twenty one. ⁠⁠
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A weekend of reflection, celebration and joy lies ahead.
The last of the dahlias. They are declining with the light. ⁠⁠
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Though you can't see in the photo the doubles all have that mucky chicken bum at the back and the singles have dropped their petals.⁠⁠
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The best things in the garden at the moment are the sanguisorbas - bought from @quirkybirdgardener in the summer - and settling in so well that one is now as tall as me.⁠⁠
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They've always been one of my favourite cut flowers - these white ones remind me a little of of lambs tails.
Home⁠
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After an incredibly inspiring couple of weeks. ⁠
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We ended up our holiday at Camp Goodlife @thegoodlifesoc - where it seemed that every single person we spoke to was making a positive change in the world. From creating new ways of running restaurants to connecting people to the land to making beautiful clothes to teaching children about growing food. 
And for everyone, these changes were centred around joy. ⁠
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I loved our trip but I’m so excited about getting back into the Studio this morning. 

📷 @katgoldin
Thistledown is so beguiling. ⁠
The soft cream catching the light, waiting for goldfinches to alight. ⁠
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I’m heading to Hawarden today to join the lively people at @thegoodlifesoc and teach about foraged colour and dyeing socks with all kinds of plants. I’m hoping to be able to harvest some thistles as they give a particularly beautiful mustardy yellow.
Though I grew lots and lots of straw flowers for Christmas wreaths back when I had a proper commercial flower business,  it was only this year that I slowed down enough to really see them. ⁠
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I’d assumed that they wouldn’t be good for insects until fully out - flat dulled daisies, past the point of picking - but actually wasps seem to pollinate them when they are still tightly furled. ⁠
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This patch was wasp central for weeks. ⁠
A few butterflies flitted about, but mainly wasps⁠
I am somebody who needs distance to see a bigger picture. ⁠
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For the past couple of months I’ve been really struggling with where Snapdragon Life is, and how to get from here to where I want it to be. ⁠
I filled books and books with notes but was going round in circles - unable to commit to anything with the kind of conviction a small business needs. It was all too fuzzy somehow. ⁠
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Now I am away from the Studio. ⁠
Right in the middle of two weeks of walking and eating and photographing gardens and meeting friends and suddenly it is all much clearer. ⁠
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I now have 5 sentences written in my phone notes and a high clear soaring route to take. ⁠
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The multi talented @katgoldin took this photo of me in the Studio before I left - part of a photo shoot that took almost three years to actually schedule because I will do almost anything to avoid being in front of a camera.
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At Snapdragon Life I gently guide you through bringing the changing seasons into your daily life, helping you slow down, so that you can experience increased well being, calm and creativity.

 

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