FASHIONING FASHION FOR US HUMAN ZEBRAS 🦓

[lupusinflight]

I know these are turbulent and unstable times, times when not worrying about clothing is probably the easiest part of this pandemic (smart top/boxers beneath is a running meme for work at home zoom calls), but for those of us who live the pandemic mirror as our normal everyday life, I wanted to ask a fashion related question ... or rather, I wondered if any of you would mind sharing any fashion related advice or compromise you have had to make to accommodate life with chronic illness?

For my part, battling fibroids, migraines and pockets of tender oedematous tissue (totally made that up - but how else do you describe soft and tender tissue?) means I have almost entirely migrated to wearing a form of sleep/loungewear from day into night and into day again ... soft and non restrictive clothing basically. And I’m wondering if this is having a psychological effect on me - I’m basically a cocoon within a cocoon most of the time ... I’m always cold so if I could wear a duvet or a small bed I would 😄🙈

Are there any types of clothing or clothes stores or hacks you have adapted to suit the various tentacles of illness? Would you mind sharing? Anything at all! To do with any part of the body (eyes included - I know EOLHPC swears by eye masks... or feet in terms of types of footwear or socks)... But particularly if you have or have had fibroids which make wearing anything constrictive around the abdomen a real dilemma.

Forgive me if this seems a superficial post. Garments are superficial to an extent but they are also part of our survival. Helping or hindering, depending. Are you all quite good about changing into ‘normal’ clothes when you wake up? Please tell me I’m not the only one slubbing bedtime wear regardless of the sun?!!!

Here are some articles gathering the best (most stylish, which also translates as most expensive in some cases... but maybe as birthday or Christmas gifts down the line?!)...

harpersbazaar.com/uk/fashio...

cosmopolitan.com/uk/fashion...

And here are some links to comfortable/cooling clothing websites suggested in comments below...

aspiga.com/products/harem-c...

johnlewis.com/john-lewis-pa...

jojomamanbebe.co.uk/sale/ma...

eccoshoesuk.com/womens-snea...

lilysilk.com/uk/hot-list?cs...

[Spanielmadlady]

Hi.ive been on prednisolone for 6yrs and as a result have a steroid stomach and always look 7 months pregnant.i struggled to get anything comfy...waist band would dig in or roll or I would have to get things far too big to fit my stomach.my daughter and granddaughter came to visit and she was wearing a pair of maternity jeans.. they are so comfy she said.....lightbulb moment 😃 so I tried on a pair of maternity Jeans at the earliest opportunity.i have a full length pair, a cropped pair,a pair of shorts and a skirt.worn with a long top ( I'm too old for cropped ones) no one can tell . I also look for empire line maxi dresses for summer and jumper dresses in winter as they dont have a waist. Xx

[EOLHPC in reply to Spanielmadlady]

😆 me too: maternity leggings & empire nighties have saved me❣️🍀❣️🍀 Coco

[Spanielmadlady in reply to EOLHPC]

I'm not bothered what others think..all that matters to me is I'm clean,warm,presentable and comfy but thank god I'm not alone 🙌 maternity tights and a jumper dress in winter with boots are snug and comfy.❤❤❤

[EOLHPC in reply to Spanielmadlady]

🤩👍🤝✊✌️❣️

[lupusinflight in reply to Spanielmadlady]

That’s exactly what I’ve been googling - maternity wear... jeans and tights ... just haven’t known which shops - but would you say doesn’t matter? And presumably just your own normal size works with maternity jeans?

Thank you so much for sharing - a big part of wearing lounge wear or sleep wear is to avoid jeans with their buttons and zips causing pain and discomfort.

Empire line dresses also sound the way forward except not much opportunity in colder climes- and jumper dresses with no waist too - thanks, it sounds like I’m on the right track xxx

[EOLHPC in reply to lupusinflight]

Jojo mama bebe does these for all seasons...there’s a sale on now 👏👏👏👏

jojomamanbebe.co.uk/sale/ma...

[lupusinflight in reply to EOLHPC]

I’m on it thanks! I guess I just have to leap in and start experimenting- And ignore the psychological aspect of me not being pregnant 🙈👀

[EOLHPC in reply to lupusinflight]

👍 it’s v hard...stirs up all sorts of sadness in me: eventually decided to pretend am buying for my granddaughter 😏who wears my size...but, even at my advanced 😉 age, going in there reminds me how tough facing up up to not being able to have my own felt + the regrets I still feel....my version of this was due to infertility + factors relating to 🦓disability...basically, everyone so affected lives their own deeply sad version of this...thank goodness for mail order! The JMB website is great 👍❣️

[lupusinflight in reply to EOLHPC]

You know it’s an ongoing raw grief for me... and fibroids are like a phantom pregnancy... very distressing every day. So if I can find clothes that at least make me forget for a while... Women are always told by doctors that ‘most’ women have fibroids. Yet nothing on the clothes market suggests this is openly faced as a physical challenge.

[EOLHPC in reply to lupusinflight]

🤦🏼‍♀️ It’s V raw, I know...how could it not be...just wish we could 💫 this away...I think medics who say this ‘most’ folk thing are downright sadistic: GRRRRR, Let Me @ ‘em 😈...wish firms like JMB weren’t so targeted at maternity, when obviously they help loads of us too...maybe this is something we could help influence in some way: make swollen abdomen fashion more inclusive 🤔

[lupusinflight in reply to EOLHPC]

The Coco-Shai brand... kindness clothing... not forgetting the chic or the colour... 🥰🥰🥰

[EOLHPC in reply to lupusinflight]

👍 We gotta talk about this 😉❣️

[Lupusrelative in reply to Spanielmadlady]

This is also what my sister would use due to her ‘twins’ tummy!

[Oshgosh]

When I had dmards bloods done at the height of Covid. The phlebotomist said that she had day pyjamas and night pyjamas.

[lupusinflight in reply to Oshgosh]

Ooh did you press her on what she meant was the difference between them?! I like the sound of that!!

[EOLHPC in reply to lupusinflight]

My neighbour wears ‘harem pants’ all day long: she looks so comfortable & graceful...she has them in patterns & block colours...i think of these as a sorta day pjs....I especially like these cause the waist is stretchy:

aspiga.com/products/harem-c...

& Aspiga’s mission is sustainable...they do a lot of lovely loose tops & tunic like dresses too

[lupusinflight in reply to EOLHPC]

Love love love - especially the zebra harem print 🦓♥️

[EOLHPC in reply to lupusinflight]

👍 🤗❣️

[suzannah16]

I have a stoma to contend with, which the surgeons thoughtfully put where the waist band of most clothing goes. I have to look for high waist band jeans to avoid the waist rubbing. If it wasn't always windy here I could be tempted into a long flowing caftan.

[lupusinflight in reply to suzannah16]

Kaftans would be amazing!!! I’d 100% live in kaftans like my mom used to when she was pregnant with us - but that was back in India where a kaftan also worked as a very stylish and pretty dress, wear some hoops and heels and you were perfect. Which high waist band jeans (from where) have you found most comfortable?

[suzannah16 in reply to lupusinflight]

I had some from matalan but they've stopped selling those, so i'm online hunting for a replacement

[lupusinflight in reply to suzannah16]

Am so sorry about the stoma - how long have you had it? My friend has named hers 😬😊

And yeah the docs never consider what we will do for clothes afterwards ...

[suzannah16 in reply to lupusinflight]

2 years now after 20+ with colitis. I was going to call it windy wendy but my family have no sense of humour. anyway it's too annoying to be female so to myself i call it farty marty. it can be noisy at the most inconvenient moment.

[lupusinflight in reply to suzannah16]

Windy Wendy was a cool and funny name! But yeah my friend named hers after a guy too... it must feel like the most personal extension of yourself / not yourself xxx

[suzannah16 in reply to lupusinflight]

it's a love/hate relationship. particularly bad when I feel too tired from the lupus to change it but have to do it anyway.

[jane1964]

Hello I have found I have become super sensitive to any bobbles roughness etc especially at night unless my sheets are perfectly smooth they keep me awake some nights are worse than others.My clothes similarly I can't stand any pressure everything has to be loose and soft.And shoes are a nightmare I only can wear one brand and only a couple of their styles they must be soft and flat and wide.

[lupusinflight in reply to jane1964]

Yes to the bobbly sheets - and worse still for the crumbs ... *shameface* I eat in bed, especially when I have infections or migraines and can’t get up yet... so that’s not great ... and temperature control is such an issue at night isn’t it? From too hot to too cold...

Temperature control with our feet is another issue... Which brand of shoes do you wear?

[jane1964 in reply to lupusinflight]

I agree with temperature control I'm never happy sheets on then sheets off then body under sheet and legs out!I like ECCO shoes they are the only ones comfortable and I wear my slippers so much they wear out faster than the shoes, especially this year I went 12 weeks without even putting the shoes on I did think they might not fit anymore but they did and I've been out now for a few short quiet walk's!

[Lupusrelative in reply to lupusinflight]

Have you tried Sketchers? My sister who has RA swears by them

[EOLHPC]

😍Adorable selfie: I feel cosy just looking at you! & I love the concept: thinking about it now, fashioning fashion for my v early onset🦓self has been a lifelong source of puzzlement...cause although some aspects of my 🦓bod’s hypersensitivities are fairly constant, eg the heat & sun reactions, local hot spots just do keep taking centre stage, sometimes for years, throwing any seeming wardrobe stability into anarchy...

eg the recent 5 years of my GI stuff segueing into Intestinal Failure was a BIG YIKES phase due to the massive mega sore balloon my abdo became.: it told me LOUD & CLEAR: DON’T PUT ANYTHING ROUGH OR RESTRICTIVE EVEN NEAR ME! And even now it’s settled down enough so I’m in less despair over its anxiety, my abdo is STILL very quick to shout when a garment doesn’t agree with it 🤷🏼‍♀️

And also: THEN there are the inevitable evolutions in manufacturing of clothing...fabrics, design etc keep changing....sometimes for the better eg my abdo told me THANK GOODNESS for fun sources of maternity clothing like Jojo mama bebe etc....and also for online mail order: I never really learned to relaxed about going in Jojo mama bebe to try things on 😏

But, basically, every phase of my 66 🦓 years of fashioning fashion has been about soft, loose clothing that cheers me up...colour & design also matter a lot - especially cause during my first 40 years I had to rely on family hand me downs which tended to come from my aunts & mother, so I felt even more prematurely aged than the all the 🦓ness had made me anyway 🙄 🤣🤣🤣🤣

For the past, say, 10 years, soft shawls & tunics over maternity leggings or soft stretch jeans have made me giddily happy with relief...I’ve found a few sources that give me the shapes & textures & JOY I need...

Footwear fashion has always been ANOTHER massive hassle for 🦓me...OMG the phases of shoe-makes I’ve been through as the complex of horrors affecting those poor flippers have done their best to torture me 🙄...and NOW my simultaneous raynauds & erythromelalgia is so severe that I can’t wear anything but bespoke orthotic sandals: I think the footwear 😈s have dreamt this up just to finally make me cry: UNCLE 😱....BUT: so far my inner ‘matron’ is finding inventive solutions online with the help of my specialist podiatrist...we’re bespoke modifying birkenstocks: HURRAH❣️

this 🦓life involves constant DIY specialist nursing to some degree, and my inner ‘matron’ tells me that what I wear day & night matters: it’s a vital part of my self-help/lifestyle techniques tool kit, alongside the meds in all my combined therapy treatment plans 👍

OH DEAR: you really got me going 😅...🤗Thanks for posting, Shaista...will be following your discussion keenly

🍀❤️🍀❤️ Coco

[EOLHPC in reply to EOLHPC]

PS have been using ultra low cost black basic flimsy sleep masks from my local chemist for years, for Christmas last was given a Liberty of London sleep mask: 😯OH MY...so pretty & cheerful & cosy & comfortable...My feeling is: the way these ‘hug’ my head help me sleep the way weighted blankets help other folk sleep 👏👏👏👏am going to treat myself to another from Liberty when this one wears out (which won’t be soon cause this one is tough as old boots despite its loveliness)...

[misty14]

Hi lupus inflight,

Great post that has got us all thinking about a very important subject that does affect our quality of life.

You can get some really pretty pj's now that do segue from nightwear into day. Some are too good for night so don't feel badly about having to wear them for comfort. Trouble is having to lounge so much and not go out is not helping our mental health!.

I've made sure that I still wear my jewellery , brush my hair and keep wearing my pretty tops to keep my spirits going .

I'm sorry your having to cope with so much dear lupus inflight and hope things ease up for you soon. Xx😊💕😊

[lupusinflight in reply to misty14]

Well done on the daily jewellery!!! Two days ago I made myself paint my nails. So that’s a step towards something ‘normal’...

Hair brushing... not sure my hair was brushed in the selfie above eek 😬 😂😂😂😄 I think I had just rolled out of bed 🙈😘😘

[misty14 in reply to lupusinflight]

I'm very impressed lupus in flight at you painting your nails!. I find it hard to fit in cutting and filing them which seems ridiculous!.

Do you find despite being home the days still fly by?. It's weird !.

It's wonderful how we've all got these great tips to keep us going thru this tough time!.

Thanks so much for posting and you looked lovely in your selfie. If you buy some gorgeous pj's , please do another pic to show us.

Keep safe and well in the meantime and all your family. Xx

[lupusinflight in reply to misty14]

It is past the middle of the year which is unbelievable - Christmas almost feels like it will be upon us!! Wonder what the shops will do this autumn ... wonder what Halloween will be like for the kids ... I will be very glad for a break from the obsessive consumer culture that surrounds the winter season, won’t you? Maybe people will reconsider their years of bizarre panic buying ....

You keep safe too xxx

[misty14 in reply to lupusinflight]

I agree lupus inflight, this year is disappearing fast which is very sad!.

I too wonder what lessons people will have learnt from the pandemic and I hope this will be reflected in the end of year sales behaviour!. . No Black Friday I hope as that should be banned now!. A lot will have lost their jobs so won't be able to afford to panic buy!. They'll be using food banks for the first time instead!.

I hope the nicer communities that have been created out of this pandemic will last now till the end of the year when we may get a second spike!. Fingers crossed. I hope you treat yourself to some lovely pj's or softer leggings!. I find those comfy too.

TAKE CAREXx😊💕

[EOLHPC]

Good young contemporary design AND v friendly prices...🍀❤️

[EOLHPC]

😯 Get a load of these silk pjs...in lots of colour ways:

lilysilk.com/uk/22-momme-ch...

[lupusinflight in reply to EOLHPC]

Am going to keep adding in these website links to my main post, so a little database is created for anyone who comes along later...

[EOLHPC in reply to lupusinflight]

😯❣️👍👏👏👏👏👏👏👏👏

[lupusinflight]

Anywhere in particular you get them from Louise? And what do you wear on your feet with leggings? I’ve been living in Uggs even in the summer 🙈🙈🙈

[Salzer in reply to lupusinflight]

I ❤ Uggs too. I wear them for 9 months of the year as they're the only thing that keep my feet functioning in the cold. I try to set my feet free for a couple of months in the summer as they hardly see day light for most of the year! I've also been stocking up on loose maxi dresses with sleeves as they seem to be in fashion this year and are available in most high street stores. Only challenge is not tripping up on them going up and down stairs... You have raised such an important point here. Being comfortable with a bit of style while feeling rubbish is so important for us all.

[lupusinflight in reply to Salzer]

Ooh I didn’t know maxi dresses with sleeves were en vogue !! I wish we could have selfies from everyone in their home attire - but naturally that’s not something most people would be comfortable with - breaks the privacy and anonymity that most people prefer on health forums - er... unless they’re me ... but I think that’s because I’ve been blogging for ten years!

I live in Uggs too and am trying to give my toes a little airing too.... poor things ...

I’m grateful everyone has responded with ease and honesty - clothing is a subject that tends to be viewed as an outside the house thing - but some of us have such restricted lives that clothing inside our houses for reasons relating directly to our illness are worth thinking about and sharing xxx

[lupusinflight]

Oh yes that’s a good tip- thank you - will look into finding something... maybe I could use one of mum’s silk saris, if she had one to spare...

[Lupusrelative in reply to lupusinflight]

BTW, you look adorable in your selfie. And may I say what a positive person you are. Your bubble es shines through. Great post.

[lupusinflight in reply to Lupusrelative]

Thank you so much for saying this - as it turns out my bubbly self was hospitalised the same day and I have. Even very sick with sepsis, high fever and vomiting ... not sure what’s going on xx

[misty14 in reply to lupusinflight]

Do hope your better soon lupus inflight. TAKE CAREXx

[Lupusrelative in reply to lupusinflight]

Aww, that’s not good. Sending positive thoughts to help with your recovery xx

[EOLHPC]

Not inexpensive, but at least the sale is on! 😃

[Spanielmadlady]

Thankfully I dont have any issues with my feet but I tend to wear flats....fabric sketchers with Jean's in summer and a decent pair of leather boots in winter.clothes wise I think I got my cropped maternity Jean's from next and the denim skirt ( which I can wear all year...thick tights and boots in winter sandles in summer) maternity leggings were asda i didnt want to spend alot as with being on steroids my size fluctuates sometimes and yes you just buy your usual size.. happy shopping x

[lupusinflight in reply to Spanielmadlady]

Will look up fabric sketchers thank you!!

[Oshgosh]

It’s not superficial.we need to be comfortable.

I get showered / dressed every morning,I need to keep to some sort of routine.

I hadn’t thought of maternity wear. My problem is not the waist band,it’s the pain over my lungs which make it hard to get comfortable,but a bit supportive bras.

[lupusinflight in reply to Oshgosh]

Oh yeah ... that reminds me - I totally dispensed with bras a long while ago... 🙈🙈🙈🙈 just realised I didn’t mention that in my post ... I think that’s part of the whole comfy loungewear choice - bras are unbelievably constricting for both lungs and ongoing migraine/eye to neck pain... any particularly supportive bra options?!!