LUPUS UK

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ON BEDROOMS AND HABITS - HELP!

Hello my dear Forum Friends,

Year Three of Pandemic Pandemonium! Well, I say ‘pandemonium’ to be alliterative, but really it’s awfully quiet where and how I live. If it was a quiet rippling river pre-covid, it’s now a wind whisper.

I wondered if I could pick your brains on a design matter. If there are two categories we could divvy up our habit selves into, I guess we’d have the neat and tidy, organised lot, and then we’d have the boho-artist-writer-creator living in a mess. Usually she can find stuff, but often something super important goes missing. Can you guess which one I am?

I have been bothered by my lack of organisation and untidy ways for as long as I’ve been sick. And myopic! Which doesn’t help. So here’s me, being desperately nosy but also specific in that nosiness - what is your bedside table like? How have you arranged your bedroom to accommodate The Lupus (and all the additional co-morbidities)? I have never achieved the goal of figuring out a beautiful system for my gazillion vials of glaucoma eye drops, my usual tablets plus the unusual but just in case tablets, my kettle, water bottle, morning munchies, midnight snackies, pots of tiger balm, vitamins, glasses (for drinking and for seeing)… and on and on… a place for socks, piles of books, chargers, gadgets… not to mention all my writerly requirements… when you’re sick, and often bed bound, you need the house near your bed. How to achieve this without A Mess??

To visualise my bedroom, I offer you the mirror opposite. This is Flannery O’Connor’s bedroom, out of which she wrote and rested - those are her metal crutches, which she used to get about her parents’ dairy farm in Milledgeville, Georgia - where she spent her last years succumbing to The Lupus.

Post pictures if you want to, or word pictures are perfect too - but this is me, hoping to snaffle a few tips & tricks without having to read ‘Atomic Habits’ by James Clear or any other terrifying self help book.

With love,

Shaista

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lupusinflight

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This is a place holder. I took some pictures, but I don't know how to post them here. I am feeling off today but want to return to meet this charming challenge. I have an an aesthetic order of sorts but rely on the tactile more than the visual to find my pills and eye drops. More anon.😍 JoAnne

You can send the pictures via email JoAnne! I’ll look forward to them, and hope tomorrow is a little easier xxx

Drawers are my friend! I have a small chest of drawers for a night stand. The top is for my echo dot, lavender pillow spray, a landline phone, , a book or my kindle, my weekly night med case, my glass of water and my glasses nothing else. Top drawer has paper, pens, tissues, lotions and Tylenol. Mid drawer has pj’s and bottom drawer has extra socks. My husband has just a large round Sheridan table with a lamp, alarm clock, tissues, lotion and a journal. I generally am only in my room early in the morning or for bed time. So only water or if I have time I will bring a coffee up and sit for a few minutes too read in the blue chair.

I am super anal about putting things away where they go for my memory has been effected by strokes so I need everything in its place more than ever but I always was pretty neat prestroke too. I follow the five S business plan in my house. Sort, set in order, shine, systemize and hardest of all sustain.

In my guest room I actually set up a basket with water bottles and snacks and I have a coffee pot with mugs and creamers and sugar packets on a night stand.

Nightstands

Roarah, how did you post the picture? I want put mine here, too. Thank you. X

On the bottom of your response is a line of symbols of text options and after the smiley face is a rectangle with a sun and mountains if you click that you have an option to use your photo library or take a picture. It allows one per response

Many thanks! A whole new world opened up.😊

What a lovely bedroom! Love your rug. I understand about your memory issues. My problem with my memory is if I put something somewhere, then I can't remember that. If I can't see it, I am lost. So I tend to leave things everywhere and that is another whole problem. When I work at trying to organize, etc., I end up getting exhausted and getting more confused. I had previously been a teacher who worked with students with learning problems. They were extremely bright and some had memory issues so it is ironic that I developed similar problems from lupus including short term memory, reading and math difficulties, organizational difficulties, etc. All the coping mechanisms that I knew do not really fix the problems. But I always remind myself that I was fortunate for many years to have none of those problems. Sorry for going on. You have given some excellent advice and I envy your organizational abilities.

Healing hugs.

I had all my organization systems at home set up luckily before my stroke. This year I helped my father with Alzheimer’s move to a senior independent living cottage. He had to relearn his environment but I was able to set his rooms and kitchen up almost the same way as the house was for consistency. I am very impressed at how well he has been able to acclimate to his big changes. He has moderate cognitive decline so not sure how long the independent living will be sustained but for today we are good.

That is so good that you could help your father. I hope he can be independent for some time. You are amazing for sure.

Healing hugs.

How fortunate for your father Roarah that he has you, and that despite your own ill health, you were able to secure his environment… there is a beauty to being organised. I am in endless admiration of anyone with a system designed to make life easier or more adapted to changed or changing circumstance x

I am just the same as you Pumpkin2009 - I need and like to see everything - and yes, that absolutely makes for an untidy situation. It must be so difficult to go from one way of living to another, but I guess it makes us compassionate towards anyone else suffering a similar life? In my case, as a writer, I have a ton of books on bookshelves and they devour my room more than anything

makeup rolling cart to the left and hair rolling cart to my right inside my bedroom closet so my bathroom doesn’t get all cluttered and I get plenty of time to rest on my ottoman while trying to pace myself to beautify myself. Convenience plus, Handy. I can wheel it every throughout my room to my vanity area and roll it back out of the way into the side closet.

I’m very detailed and organized and my kitchen the same. My refrigerator sectioned off and meal prepped. It’s sectioned off according to baking section, ninja smoothie section with anything needed to make all protein smoothies to any flavor of protein plus vital collagen for my drinks/coffee station etc

My seasonings are arranged to outdoor grilling seasonings, Spanish, Chinese etc (love seasoning)

I have a cubby, bin, containers, labels n just everything beyond imagination.

Too much to go into.. but all worth it

Kristina

Late afternoon

😍

Late afternoon

It is brilliant!

OMG Roarah this is it! Drawers and the S business plan - which of course I’d never heard of. I love the clear distribution among the drawers too - presumably you have a separate storage cabinet for all the extra and overflow of your meds? (By the way, since you are so ordered, do you keep a hospital bag ready as well? Or do you not have sudden onset of infections like I do?) Thanks!!

I do not have a bag at the ready. I had one packed when pregnant but I did not get a chance to even bring it lol and the only other stays were taken to hospital by ambulance from a amusement park in Orlando Florida in my bathing suit no less and once from work. I fill two weekly med containers one for my am pills kept by my coffee pot in kitchen and one with my nightly doses. My meds are kept on top shelves of kitchen pantry. Habit from having young kids in the house. Click photo and my meds are sorted in the green “filing cabinet”

Meds up high away from kido

First of all, thank you for helping Joaclp … second, in a bathing suit?!! Third - I love that black old school phone!! Brings back memories of when I was little :))

I am exactly the same Roarah, I have my am/pm pills box sorted too, and keep in my kitchen cupboard by my coffee ☕️ this way I will remember.

I also keep everyday meds in container on shelf. The rest of my meds in guest room cupboard, similar to what u have. Then more in chest of drawers, I say 'Welcome to my home pharmacy' Lol🤣

It is so nice to know, we have our Forum 🥰 to have common ground.

Glad you posted❣️Our bedtime nests are SO IMPORTANT❣️…gotta do SCIG today, but managed to take pics of what helps me bed/side…especially my friend Munni’s serene Ginkgo Mandala wall hanging, my glass mats & MANY cushions + bolsters for propping my aged hEDS carcass …luckily our bathroom is right next door with masses of ‘care supplies’ + the bedside chest of drawers has lots of top-space for loading with care stuff if needed…also we have 2 handy small folding tables that’ve helped hugely here as needed …my cane hangs near the bed behind the chest of drawers hooked over the mirror supports😄 💞💞💞💞 Coco

Will add close ups…

First close up…my sildenafil for 6:15 am dose is in the little tin & before-bed ciclosporine eye drops are in the little plastic bag

These mats have been here for over 10 years, helping me ‘cope’

Created by my friend Munni

I gaze at it, in meditation…ALWAYS magically calms & centres me

This is heavenly! I love the thought of you gazing in meditation at this mandala… tell me about Munni soon xxx

Yup, more and more I am beginning to see that what I lack is a chest of drawers… little cute bedside tables are not fit for the chronically ill 🤒

👍❣️💞💞💞💞

This is how my organization works for me. It is in progress so sort for chaos🤨 book shelves have been built with long window seat below. Under window seat are soft containers with Velcro lids. I store socks, different ankle braces, some meds, pajamas Etc…. I have room for 10 containers. My side table has a pitcher of water and cup and drawers have some emergency meds. The adjoining bath has been changed for handicap so everything is ready in the event I need this which is pretty much a yes ma’am just a matter of time. My dresser has been totally built into the bathroom where I can keep clothing. Mostly pajamas and lounge clothes. My sofa lounges back on the bad nights my spine needs more support and I sleep there. The table beside it is on wheels. All the tables in my house

Are on casters and lightweight. I can move them anywhere. So you are looking at some chaos in progress!!!

This is how my organization works for me.

I’ve always dreamed of a window seat so I’m glad you had one built.. tables with casters - very sensible… and ‘chaos in progress’ is the most perfect description for me as well!!

Hi Shiasta 🤗 Here's some 'boudoir' shots from my world. I have a chest of drawers one side..the main side as far as I'm concerned..with everything easily within reach. Drugs n glasses n a note book in top drawer..second drawer down contains nibbles..vinyl gloves n bits n bobs for my tablet..lowest drawer is extra medical supplies for when needed. On the top I have water n a glass. I put my nighttime meds there too and I have lotion on the top for when I apply it during the night. A clock of course!! 😹 A salt lamp n a couple of essential oils I put on my pillow at night 🌈😽😽xx

Chest of drawers

On the other side of the bed I have an ottoman so that I can have the fan blow across the bed when needed. I can put my books n gadgets on there..down by the side of the ottoman by the bed is a four plug extension lead so I can plug things in. In the ottoman I have some things..extra bedding n towels etc. I have a Devan bed so I've got drawers under the bottom half of the bed 🌈😽😽xxPs. You'll also see a hat n a torch on the bedpost..n a blanket half folded over the bed..that's for when I get cold 😉

Ottoman n fan

This is the view from my bed..on the opposite wall. It's a poster that I got many years ago..it's tattered n torn but we keep revamping it. Right now it's on some hardboard..I would love to get her framed but I don't think she'd survive!! 🌈😽😽Xx

Poster of Mother Earth with a tear in her eye looking over the world

Another confirmation for a chest of drawers to tidily separate these different needs of ours… love the ottoman too… and the salt lamp and essential oils… with Mother Earth looking over you …

Krazykat we have almost exact setups including the pillow sprays! Are you my long lost sister?

😹😹Hi Sis 🤗💜🌈😽😽xx

Hello Lupusinflight, I hope you are finding some helpful tips....

We were lucky to have our very spacious bungalow offered at the end of April last year, after bidding with Council for 20 months.

Our 3 bed house was too much for me, even with a stairlift. Children left home.

It took hubby 4 weeks to paint, build wardrobes, units etc....so nice share to with you 🌼 things are much better to get from one room to another.

I keep my pyjamas etc in wide chest of drawers opp bed as it is much easier for me....on top. I keep my creams Doublebase etc, Olay Calming face mist *Aloe Leaf & Chamomile* Relaxing Yankee candles.

On corner side cabinet vaseline lip balm, hand cream. touch light lamp, digital clock with night light. I put my drinks on top and when not resting or sleeping take them away as I have a habit of spilling things.

First drawer has my essential meds, inhalers, volterol gel, lidocaine plasters etc. Glasses cleaner.

Middle drawer books, calculator, glasses, Bottom drawer, hair bands, nik naks.

You will see on Wall corner shelving. Lavendar night bed spray. You can not see but next to lamp on right side is all my extension plugs sockets. Again arms length to keep Kindle, mobile. charged.

Bathroom is literally a stroll next door, in here I have cabinets with slow close doors to keep mouth washes, eye drops/ lotions/ointments 🚻.

Also had bathroom done under disabled facillities grant. I have raised toilet, lowered bath with bath board drop down, electric shower, wider wash basin. My husband decorated this beautifully 😍

Opp our bed, I have a triple wardrobe, a rocking chair, mid-height chest of drawers, where I keep clothing in two top drawers so I do not need to bend. My fan is in corner, next to my dressing table. Plenty of storage drawers for bits, so I do not forget to put things in exact place 🤗

The key for me is to have everything close by, with easy access.

Sending you Healing Hugs 🫂 🦋🌻

I like to keep things close, with easy access in bedroom

Everything looks so cosy, so serene and pretty. I am glad that you have someone who can take your vision and needs and design them in real life. The cushions look scrumptious too. As Barnclown always says, texture and scent are as important to us in our chronic illness lives as anything else 🥰

Thank you 😊

I love this post. As you can see, it was a work from bed kind of day for me. My husbands side untouched is now my office. Window sills are my end tables. Good enough for phone, water, remote, marijuana pen. What more do I need? Heating pad over headboard ready to go if needed. Tubes coming from under the bed is to the Ooler. I have a master bathroom so most of what I need medically speaking eg meds stays in there. But I’m usually super cluttered. Was never that way before but I hate putting things away that I’m going to use again. Waste of energy. We also hired a cleaning lady. Worth every penny.

I remember reading Wise Blood by Flannery O'Connor while in college for a southern literature class. I remember it being very allegorical and dark but very memorable. Great writer.

Bedroom

I hate putting away things I’m going to use again and again too! Am thrilled to hear I’m not alone in the super cluttered department - but I think I’ve realised that it’s the books in my room that have created the imbalance. No one else has mentioned an avalanche of books So instead of lovely tidy cabinets, I have giant bookcases!

BUT, OH to be able to surround my bed with books…I ❤️ the thought of your bedroom avalanche: so much WONDERFUL company ‼️ Some day I WILL find a way to include a bookcase in my nest🤞

Realisation number three (aside from missing chest of drawers and avalanche of books), I don’t have a delicious master bathroom like Roarah 🤗 Hashtag #goals for future me!

😯👍👍👍👍😆💞

We added the master bath a few years ago. We did a small addition above a first floor sunroom. Best money I ever spent.

In my chaos in progress bedroom the new shelves built and the window seat are ALL for books. The window seat is not wide enough deliberately for sitting. It is for my books that are in my attic cubby office. Hurts to give up that space. Also I agree with all about drawers. Must have many. Also I have indulged in quilts so I can change up my bed with happy designs and colors. Antique ones I inherited and now I just look for sales. This is a great post!

Yes, I love switching up quilts and soft cosy colourful rugs on my bed … ‘tis a shawl and blanket life we lead!!

Perhaps we are all related to Emily Dickinson in some obscure unknowable way😂😂

‘Some keep the Sabbath going to church,

I keep it staying at home;

With a bobolink for a chorister,

And an orchard for a dome.’

I think we do have a little Dickinson in us… ❤️✍🏼 Barnclown Joaclp

Emily Dickinson’s bedroom

😯OH MY: A VVVVV BEAUTIFUL IMAGINING…i ❤️ these photos of their bedrooms 👏👏👏👏

Here is the link to some writers and their bedrooms xx writerswrite.co.za/literary...

😍YUMYUMYUM‼️‼️‼️‼️

🥰🤩

What a great link!!! I’ve been to Ernest Hemingway’s house in Key West 3 times now. I never tire of the incredible history. His house has never been destroyed by any hurricane. So the bedroom is what I remember except his house is still full of cats. And they allow them to lie on his bed And everywhere. But humans don’t touch anything! For those who don’t know his cat gave birth to a six toed cat and soon others which made his cats rather famous. So the

Ancestor cats still live there and are cared for by caretakers/volunteers. He did not write in his bedroom. He wrote in a detached screened porch behind the house.

His typewriter still on his table and original furnishings. Worth the wait in line if you can go. 😻

Of all the bedrooms on the list, including Victor Hugo’s elaborate red affair, Hemingway’s looks and feels the most modern, filled with light. Lucky you! Thank you for sharing the visits with us - a man who loved his cats paints a different dimension to the author! Of course one of them would have six toes… and didn’t he used to stand when he wrote … was that myth? The man was full of myths!

I’m not sure I remember whether he stood or not. The chair he had at his desk looked impossibly small for such a brawny man. The windows throughout the house are legendary huge and all rooms are filled with light. His house had no neighbors back then. He moved to Keywest primarily for fishing. It became his parallel passion I believe. The house has a darkness too if you know his history of alcoholism and violence that accompanied it. Brilliant writer. I think most creative people are a bit, kindly,Crazy🤨😽😼

We have a ski shack near Emily Dickinson’s house and we use her house as a day trip when our English family is visiting. I adore Amherst. We also live primarily in Ct and often visit Mark Twain and Harriet Beecher Stowe’s abodes. I love that Stowe spent a lot of her life writing about how a house can transform personal lives but also a well designed home could serve to improve society. She and her sister are instrumental in today’s kitchen designs and idea that a kitchen is the heart of the home.

Here is a short video about her house. c-span.org/video/?330168-1/...

She lived next door to Mark Twain. Here is his bedroom

Twain bedroom.

Here is Twain’s library where he sometimes wrote.

Library

This is lush!

Sunroom at end of library!

Lush times a thousand!! Forget Hemingway, I want Twain’s hearth and home and sun room!! Love all the literary connections above - thank you for the Stowe video … which suggests I’m not too far off in questioning all of you about your home designs… albeit from an illness perspective. Wonder what the Stowe sisters would have designed for us!! I am just re-reading Whitney Otto’s ‘How To Make An American Quilt’ so feeling very immersed in Americana…

Oh wow. The bedroom is a little grand for me to sleep, I prefer cosy. But I could definitely settle in this library and its sunroom.

I can't help thinking the decor of Flannery O'Connor's bedroom is one Hitchcock might have used to represent claustrophobia. And all that grid pattern suggests compartmentalization, something many of us know something about. I think I would find more clarity in Emily Dickinson's room. Of course, my own is usually cluttered!

And then there is how to be sick in a decor designed to facilitate care and provide more elusive comforts at the same time. I need baskets to store necessities, but magic carpets, paintings and books, my Bluetooth player, to soothe the soul.

I love the warm colors! And trays and baskets are so useful!

Thank you. I like yours, too. I wish I could be that orderly.

Honestly I have anxiety with ocd tendencies and I am trying to let go of my need for control which manifests in needing everything in its place. Too ordered is as negative as too uncontrolled. Happiness and health lie somewhere between the two.

My husband is a bit ocd, too. And the pandemic has made him even more anxious about loss of control. It is hard. Brave of you to acknowledge it.

That’s so interesting about you thinking O’Connor’s room is Hitchcockian in flavour - I’m sure she was claustrophobic in there …living with her mother in the same house in which her father had died of lupus… when she was a grown woman used to her freedom …can’t have been easy… the disease was eating away at her and she couldn’t travel anymore.

Dear lupusinflight, I didn't want to hazard the thought that Flannery O'Connor's writing can be claustrophobic. It has been a while since I've read anything of hers.

You were almost right about my bookshelf. I have the Chinese women in another stack across the room. The cover that resembles the Xinran is A.S. Byatt, The Biographer's Tale. I also have a recent novel by Amitav Ghosh, who, with his wife Deborah Baker, is our neighbor. I love her The Last Englishmen.

Speaking of treasures within reach. I wanted to post more of what gives my room personal warmth, but I didn't for two reasons. First, I didn't want my ego to dwarf all the wonderful sharing by others here. And what really matters to me is all the paintings on my walls, but I promised the artists that I would identify them and their works if I posted photographs online. It all just seemed like too much to do, with my depleted energies, and also overkill in relation to the task at hand.

My advice to you is keep those avalanching bookshelves. What matters to us is not just organizing our pill bottles but keeping in sight what gives us joy. For me: art, books, music, as well as sachets and pillows of many shapes and colors!

Btw, we lived in Los Angeles for 30+ years and could not have bookshelves near a bed or sofa due to earthquakes! People were killed by their personal libraries, so relish your avalanche. Now we are in Virginia.

Yes yes yes to everything you say - I shall continue to treasure my avalanche - and now for the new reason that living in the fenlands as I do (flatlands), I am safe from killer book earthquakes … I shall pester you for more sharing of art and books in private …How interesting that Ghosh and Baker are your neighbours … I still haven’t read his work although I know it is highly praised… a friend lent me ‘The Glass Palace’ and somehow I never got around to it…

I for one would love to see more of your lovely home when you have the energy!

Last summer: flowers.

From my garden: mock orange

I keep losing this. Brain fog.

Bedside necessities

Look at me peeking out from your bookshelf!!! Such a thrill! Also I love Deborah Levy… and is that Xue Xinran’s ‘The Good Women of China‘ I see on the lower shelf?

See reply to this in above re Flannery O'Connor.

I did! And I replied to it above … the trouble with a post like this is it starts to get unwieldy in its replies 😘😘

Yes, but all of it is so interesting, generous and responsive!🤗😊😘

So, I’m thankful for being OCD (most times) I’ve raised 4 children (two with special needs). Keeping repetition for my twin boys and their medications for seizures and Tourette’s n more (whom are now 24 yrs old) was the best for them. Routine routine routine. So, now that I’m 52 and with Lupus and a cluster of autoimmune diseases, Hashimoto disease & fibromyalgia etc you get it. My liver started up n one meds leads to another sooo COVID kept the boys at home n I started slowly EXTRA organizing lol if I could put more than one pic here So, you can see my brown double doors cabinet below my tv. Which, sadly the top is my last big that belongs in my bathroom was switching my bathroom up.. anyways, I have found all these cubbies and baskets n each one have a bin for:

Head (Tylenol, aspirin, nasal, eye drops, sinus etc

GI (gastrointestinal) meds (anti diarrhea, nausea pesto etc

Throat (Vicks, cough syrup, cough drops etc

AM morning meds

PM night meds

I have my closet as it’s easier for me to sit and do my hair and makeup (due to energy or laziness lol Noo just lupus or health) sooo, my makeup rolling cart is on left side of my closet and to the left is my hair rolling cart (hair dryer, curling Irons, brushes hair products and hair dyes etc)

You can’t see my closet doors have mirrors on them sooo I just roll out my cart I’m using fix myself up from my ottoman in my bedroom then I’ll roll it back in and pull out my hair rolling cart.

Next to my bedside is two bottles of water, cup of decaf coffee, my dogs scooby treats (can’t leave out the furbaby) my 8 inch tripod that holds my cell phone so I’m hands free talking on it and my glasses n inhaler. My remote controller.

As I stare out at the water from my bed.

It’s very nice to have everything in its place so I know if I am ever admitted or blind I can tell myself and others where to retrieve my things in lightening speed.

Yes, lol, I DO HAVE two small rolling on wheels (ofc) suitcases one with winter clothes, pair shoes n pjs if I’m going somewhere cold and yep another with summer stuff.

Kristina in Sunny Florida

Late afternoon

I work with elementary children and I can say that routine is instrumental for all children

Kristina, this is definitely hashtag goals 🤗 I love the way you divvy up your body into different baskets… that’s always my aim but somehow things creep into blurred boundaries. You don’t mention a pre-packed hospital bag, but like you say, your level of organisation is a huge kindness for anyone who needs to find stuff for you when you’re in hospital. Thank you for sharing this level of detail - I’m in seventh heaven with everyone’s friendly generosity 👏🏼👏🏼 ❤️❤️🐺🐺

I think it is good to talk about every day things like this, and this is why it is such a lovely Post.

Maybe we can start posts with Topic headings of similar importance 🤔

Hello Marriage01, your set up is impressive 🥰🎀🦋🌻

Great idea to have a Closet with eveything in one place....I like how you have compartmentalised. I find that my way of coping, is to deal in segments.

I have this approach in our home and it works wonders with my memory and feeling better in myself. Actually, my coping strategies began when I became poorly. My daughter brought me a Yankee candle, then my husband did and before you knew it, I was doing Inventories. You know what, it got me through....🌈

Your Strengths are clearly testament to being a such a Good Mother. Now hopefully, you can Relax a little and Rest.

Sending you Healing hugs 🫂 🤗 ❤️

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