Just hoping for tips from any of you who manage to enjoy gardening despite lupus....am finding it very hard....I miss gardening a lot...so, if you're still gardening:
What kind of gardening can you enjoy?
How much help do you need and how do you get it?
How do you manage your sun & heat protection?
Have you found an unusual angle, e.g. I've been growing bonsai for 40 years now and so long as I have help with the repotting, I can at least keep a few of these going (and haha to lupus: needing to stay home most of the time means I'm here to do the watering!)
Etc, etc
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I do miss my gardening. When we moved two years ago it was such a wrench to leave my garden but it was too much for us so I selected a few(ha about twenty plants) to bring with me. One being a rhododendron which I was bought by my mom and dad when six years old.It has now moved house a whopping twenty two times!It is now a permanent large pot dweller as are many due to being able to reach without bending down.I have a number of evergreen azaleas and rhododendrons as they don't need much looking after no pruning or leaf collecting
and with a few select small bulbs around edge of pots give colour all year round for very few spoons.I have found some evergreen ground cover ,lithodora and diamthus derltoides,which also do a great job on top of pots around trees and shrubs which keep the weeding down and stop the pots drying out too much also giving the look of a little garden in a pot.I have found wisteria in a large tall pot can grow and floiwer kept as standards or bushes .I do also have acers as too beautiful to give up .Due to little energy and having to pop out when sun is not out but when its not too cold I have had to give up any high maintenance plants but there are some amazing evergreen plants that really are Lupus tolerant!
Wow: you've really got this gardening with lupus thing sussed out! Love the ground cover and bulbs in with your big pot plants! Great tips: thanks effie👍
Am glad you like my acer. Haven't been able to produce my own offspring, but have nurtured 3 of these acers from seedlings. Aren't oriental maples wonderful for big pots....but every year I do have to pinch back all the young shoots as per bonsai training techniques, or they would grow too big for me fairly soon...that pic shows a bonsai that's nearly 40 years old and could be a 20 FT + tree unpruned & unpinched. Am thankful I can still manage the early spring pruning & then the pinching back as shoots extend. lucky for me, my husband has taken on the annual root pruning & repotting...for 20 years now, they go right back in the same big pots...the rootballs are so dense that all I can do is simply gravel mulch the surface around each tree...which is perfect for the mosses that recolonise each year...I hardly ever see a weed seedling
My garden is done the old fashined cottage style that way it takes a lot less maintenance just dead heading a bit of tieing up and in the autumn/spring pruning which I get a lot of help with I do a lot in the greenhouse as there is no bending most is on benches. Summer bedding all go into pots and put on watering systems so I just turn the tap on and sit and wait until they are done. Hubby helps with the heavy stuff and installing the watering system he does the veggie patch too that is also on a watering system so that when he is harvesting I can still water all our veggies.
Your garden sounds delightful Tracy! I like the way you 2 have organised this so you each contribute what you can. Yes, I can see how the watering systems must help a lot....I especially like the idea of you sitting back & waiting! your garden must be a great source of well being to you. Thanks for replying🌻🍀
I have flower gardens, not as big/full as I used to, but I still get compliments I have changed many things - Lupus may hurt me, keep me inside during most of the sunny part of the day. I, being a child of the 70's, have put several energy and water saving practices in place. My late hubby put in a rain catching and storing system using 55 gallon plastic barrells and 3 huge tanks, which I now hook my soaker hoses up to. We were having extremely painful water bills, his system relieved that. I've also cut down on the amount of annuals I put out, having gone to plants that return every year. I have a few ferns, mandevillas and alamandas in pots. The rest are in flower beds. I have folded, in that herbicides have pretty much replaced the hoe and mattock.
I live in the deep south USA, it's very hot here. And the last 2 spring/summers, it's been very rainy and humid. Between the Lupus, RA, COPD and getting close to 60 have forced me to adapt.
I don't know very much about gardening, my only tip would be raised beds cutting out bending. Having lots of pots , I've been amazed recently at what you can grow in a pot, runner beans would you believe?.
Gardening is so important for mental wellbeing that I wish you lots of luck for making adaptations. X
Thanks misty: you're so right! I take a lot of photos of our garden and I bring my husband cups of tea while he is working in the garden , + give slide lectures about the work of my garden hero Alan Bloom & my husband's work creating our garden here over the past 20+ years ...just doing all that helps me adapt to my limitations...it's been a long hard adaptation...started in my 20s in the '70s when I was (believe it or not) one of the few female head gardeners in Great Britain at a wonderful historic house near Preston....having earlier been told by a Parks Dept in Cumbria that they couldn't hire me because they had no ladies' staff toilets!
Gradually over the decades, I adapted my gardening, photography & lecturing to my physical deterioration...clinging passionately onto my horticultural career, my connection with other gardeners & my gardening hobby as I coped with unrecognised infant onset lupus, pacing myself & generally life style managing agogo....wearing an orthotic neck collar etc etc...figuring out what I could continue to do as the debilitation mounted...it was vvv tough emotionally & physically. But by the time I was in really really bad shape, and my career in horticulture had taken me into the marketing dept of the nursery at which I worked for 20 years, the v kind and great horticulturist Peter Seabrook saw me at one of my events and urged me to "go home & see a doctor" because I "looked so ill"....I think he was the first person to acknowledge my sorry state outright, possibly he could because he saw me so seldom....his words forced me into a much needed reality check: I was so fixated on keeping calm & carrying on that I could barely accept or actually see it myself...and those who saw me all the time were so intent on being encouraging that I was enabled to mainly look at myself through rose tinted glasses
The well intentioned & extremely helpful comments from PS were 10 years before my lupus was finally re diagnosed in 2011 during my late 50s ...in those years, my health actually did force me to stop gardening altogether (although I managed to judge at the Chelsea flower show in my collar, walking with a cane...wouldn't let myself miss out on that invitation!) ...my poor husband was so upset by the depression that came with this...we had met and bonded through gardening..I thought our marriage might perish along with my ability to garden...but I went into therapy and was vvvv lucky to find a wonderful counsellor...gradually, I got my selfconfidence back, and became empowered enough to force my way through the system to the lupus re diagnosis and now, thanks to systemic treatment from a wonderful lupus expert rheumatologist , am feeling better in most ways than I have since my early 20s...but spondylosis and deterioration of my muscle strength + peripheral neuropathy etc etc mean it's taking me some time to find my way back into gardening..well, bit by bit, at 62, I'm getting back into it....and the wonderful replies you're all giving me here are helping hugely
You're all so wonderful to me, my guiding stars💫💫💫💫💫💫
What an incredible story and experiences you've had thanks to horticulture!. Someone like you giving up gardening would be a killer literally!. You must keep it going however you can. Hope you've got good ideas from forum?. Take CareX
You're a dear to be so understanding...this is the first time I've explained about me & gardening & lupus in public...and the fantastic replies that are pouring into this plea for help are making me feel very moved & very humbled....and giving me lots of ideas. Thanks misty! I'm glad your garden gives you joy and mental wellbeing!🌻🍀
Hi barnclown. Thanks for raising this post. Gardening is my one true love and my plants are like my children, and I thought I would be out there doing it, keeping fit, into my old age . but illness struck badly 6 months ago and I am just now awaiting test results for lupus. We bought an old house to renovate 3 years ago with an acre of beautiful garden that had been left to go to weeds for years. It was my dream project and i was out there every day, and now I can hardly pull a dandelion out. I don't know how I'm going to manage to turn my dreams into a reality. Im finding it very hard to accept help at the moment, but know that I need to. Hubby cuts the grass but that's all he has time for at the weekend. I miss it sooo much too. All of these illnesses are so cruel.
Oh wineandlattes...am hugely feeling for you! Take heart & keep your chin up...maybe reading the reply I just posted to misty (above) could be meaningful & encouraging to you...there IS hope..you're at the beginning of a diagnosis & treatment process which really can get you back into gardening...make that one of your goals, and, 1 step at a time, you'll find you're way back out there, adapting agogo! And meanwhile I'll be getting back out there more too...
Hi barn owl I have a small garden with a little bit of everything a flower border a greenhouse two young apple trees and a rhubarb patch and lawn flower border has quite a lot of he bees in two acres tulips and other bulbs in spring greenhouse has tomatos a cucumber and peppers and never over do things I have automatic watering for the greenhouse the rest can look after its self for a few days but it's what I do it good therapy if I'm sore I go out and potter and enjoy it it takes the mind of the pain etc for little effort really have a good day george
I love my garden, sometimes it the only thing that keeps me going. I have three raised beds and a greenhouse. The raised beds are made from railway sleepers and wide enough to sit on . I grow most vegetables and even corn on the cob. Tomatoes, cucumber ,peppers etc in the greenhouse and like most other replies I only do as much as I'm able. I try not to over do it .
Good sun protection and a hat as I take Azathioprine.
What a beautiful reply: thanks sonny...You've clearly been very practical and sensible about making sure lupus couldn't stop your gardening: 👌congratulations! 🍀🌻
Thanks barnclown, you're very inspirational and I hope I can be like you and everyone else that still gardens. At the moment everything just hurts so much. Now got a kidney infection and it seems to have caused another flare. Maybe things will be better once I have a diagnosis so I can actually have some proper meds. Instead of getting down about it, I think I just need to plan things differently for my ability. I think maybe I should get someone in to help with the landscaping I had started and stick with shrubs and trees in the big borders. There are two pretty cottage borders and I'd previously got most of the nettles and weeds out, I have heard of a style of gardening where you don't dig in between , but just mulch , may be that would work. I had planned a large fruit and veg garden with six beds and gravel pathways, might have to reduce this and make the beds raised and higher. I don't want to let this beat me and take away my interests and hobbies, but its just all so tiring, even thinking about it. X
you've got it: everything you're mentioning is the way to go when you have our sort of health issues and love gardening...way back when i was studying horticulture, i learned that the methods of gardening you're planning should be recommended to people like us...but i was learning this before i could really really understand the implications chronic multisystem autoimmune conditions have for people who love gardening...now i'm older and somewhat wiser....and what i really really need is right here in this thread: these wonderful replies are pro-gardening with lupus testimonials: now i know that many of us do garden with lupus, i feel inspired and sure that i really can & should get gardening again at least a bit more.
hope you'll let us know how you get on in the diagnosis & treatment process...kidney infections are dreadful, i know them well (infection generally is one of the constant features of my life - due mainly to having an early onset immunodeficiency complex running along side infant onset lupus), and yes: once you & your drs gradually figure out the characteristics of your individual version of lupus, and which treatment plan can help you most, things will get better, and gardening will be even more of a joy again
Ooo my kind of post! And your garden looks gorgeous, I love that acer, I'm terrible with those, but I adore them. I just don't have the bonsai-fu.
Well, first of all I found I had to do a re-assess as I have been getting less active over time, this year being especially problematic. So what I would do if I were you would be to assess certain things:
Do you have a time of day/month/yeah when you feel up to gardening? I find I have more energy in spring, but I taper off until I can't be bothered to do much in the fall. I also don't work outside between the hours of 10am to 3pm as the sun is too high overhead and I react to it.
Do you have grass? Can you tend it? What is your budget like? Can you hire someone to simplify your garden for you? Can you put some funds aside to have someone else tend your garden for you, and on what timescale? (I live in council housing, and the handyman service - I get four hours of free work per year - cleared my very overgrown front garden for me so it's now down to nearly bare earth. I could have never done that myself).
What about watering? Does it exhaust you? Does it get hot in your micro-climate? Which way does the wind blow? Can you rig up a watering system that allows you to water directly from a water butt with just a turn of a valve? Even a stopper-ended hose with holes in it will do!
What sort of flowers do you love? which ones can you not be bothered about? Which ones grow too quickly for you to keep up with? As much as I love roses and dahlias, they're too high maintenance for me to fuss with. I like peonies, poppies, and marigolds - they're more or less perennial (or self-seeding) and grow and grow and grow. So the few spreading roses I have are left to go wild, and the rest fills in as it goes.
Now some things I do:
Let there be...no grass. Seriously, forget about grass. It's a pain and it just takes up space, you can't eat it, and it doesn't bloom. I cover with membrane or with ground chamomile and small clover, then bark on top. I don't have time for grass.
Knowing my energy levels I get all the basic groundwork done in spring, as I know I will be more or less incapable of doing much after that but harvest. So all the filling of raised beds, manuring, compost-piling on and building up of lasagna beds gets done then. I nurture the seedlings for planting, check the watering stations and systems, make plans for what I'm growing as far as annuals go, and check on the state of my perennials (if the Henz have got to them, essentially). I am leaning more and more to perennials these days, with a burst of something that spreads quickly for colour. It seems to be working.
Compost piles no more than 20 paces from any work area. I've got a Hotbin, several of the Dalek-types and a square large one for leaves. I don't want to have to walk too far with stuff in tow in order to compost it, and compost is useful of course!
Front garden now cleared, I am covering it with membrane, then I am covering that with wood chip, and I will be growing things in pots on top of that - I have a fig tree, a new Lilac bush, and some perennial herbs which grow rather well and quickly - rosemary, chamomile, and some variegated leaf sage. The hope is not to need to weed anymore, and other than watering now and again, it should more or less take care of itself. There will be some nasturtium and marigolds in there too, which can trail along the ground and fill in the spaces between pots. This is all because I hate working on my front garden - my front garden isn't for my benefit, it's for the benefit of fastidious, judgey neighbours. So if there is an option that looks nice but isn't very high maintenance, I go for that.
As for the back garden, that space is mine - as I've outlined in other posts, I've put a pathway in, permaculture type plants which I can pretty much leave to their own devices. They don't need much tending, and they grow HUGE (skirret grows like mad, seriously!) so they fill in and weeds don't have much of a chance. Everything is sort of thrown in without a whole lot of rhyme or reason as I want to put it in and not think about it much. I grow trees in pots, and I have a hose to water everything as carry watering can after can is just too tiring. I go for plants that spread but are easy to take out and compost when the time comes. Again, I go for low maintenance; watermelon, squashes, herbs and lettuces. I am growing cabbage, parsnip and oca (a form of tuber) because I pretty much just put them in and leave them alone till I need them. It works well!
So, I hope that gives you a bit of an idea, and you can take it on board! Good luck.
WOW: wonderful stuff silvergilt: i like your style! had been hoping you'd reply, cause i know you're a big gardener who has been thinking hard about how to garden with lupus: 👏👏👏👏👏HOORAY: i feel like i've well & truly hit the jackpot with all these great replies, and now yours to top them all....and there could be more....this is clearly a topic that's close to our hearts...thanks so much...hope you're doing pretty good XO🍀🌻
I do my garden on good days and take regular rests when cutting the lawn. I often garden late in the evening so no worries with sun and especially on full moon nights when the moon is coming up. I go long periods between doing any other than picking up palm leaves and debris to keep it tidy at least. I find the fresh air helps because I am electro-sensitive and being indoors is not good for me - it exhausts me with the electricity and WiFi of water smart meters outside each house in the road now and all the other including 4G.
Thanks cann👍: great tips, you & effie & Silvergilt have mentioned that v special angle re coping with the sun & heat exposure...and you're spot on about electro-sensitivity...your approach makes perfect sense: plan gardening activities to take advantage of where shade falls in the garden as the sun moves across the sky...and save jobs for the coolest parts of day (likewise, in colder seasons, save jobs for the warmer times of day etc to keep raynauds from flaring badly). 🌻🍀
Yes, not looking forward to winter especially with todays cold forecast, as always get worse flare-ups - keep my hat and coat on indoors most of the time in winter - what a life!
What a beautiful garden you have. I love to work in my cactus garden but have to do it before sunrise or after sunset because Arizona where I live is one of the sunniest places on earth. Simple joys!
GOSH, nanleigh: wonderful to imagine you working at sunrise & sunset in your cactus garden in Arizona: gardening with lupus!
gardening with native plants seems to me one of THE most meaningful, satisfying ways of gardening...my husband has planted a native wood around our house over the past 5 years, virtually all by himself... Despite 30 years on daily steroids and multiple major surgeries due to early onset Crohn's disease...we weren't sure he could do it but he has...20,000 little native trees & shrubs...and he tends them ongoing with great care + love...while I take photos of the whole burgeoning woodland community. The wood means the world to us.
It's beautiful to think of gardeners the world round sharing this experience of "simple joys" despite all sorts of trying problems, including lupus
Both me and my daughter keen gardeners, I like flowers pots, patios etc, she like veg, allotments, keeps bees and hens, chickens, I will share some of mine and her tips tomorrow. 4.30 a.m. feeling really tired now. But will respond tomorrow. Night, Babs x
Hooray: 🎶🎉💃💃you're a groovy mother & daughter gardening with lupus team: I like this a lot! Sounds like you've got a great gardening thing going there...thanks for your reply, babs🍀🌻
I just love my little bit of garden and the pots which have gradually increased since the 6 years when I first moved to my ground floor flat! I have good access to the little bit of garden and paving at the back of my flat.
Trying to get a waterbutt installed now, cos my water bill in the spring/summer goes through the roof.
I know I do too much. I'll potter about in the garden for a couple of days, then for next 3 days I'll be bedbound. But I so enjoy doing all the bits I do. Trying to get my new hanging baskets out prior to frosts. I have a lovely neighbour who hangs all up for me.
In pots I mainly have evergreens and perennials, not much work with them, just a bit of tidying them up.
As my darling daughter constantly says to me - "be positive".
Oh I do try but sometimes my body is just so worn out, it will not do as I tell it.
Have to stop now as fingers are swelling and arm is jumping all over the place.
Incidentally I am 62. I "suffer" from Fibro, M.E., degenerative disease in my back, stenosis in my neck and lower back and osteoarthritis in most joints. I think that's it!
Dear grandma, I can totally relate to your reply! Sometimes I dream of living in a ground floor flat with a garden like yours...nearer to my hospital & all the different clinics I attend so regularly all year round...which are all helping so much: making it even possible for me to garden a bit more again. Am so glad your daughter is there for you, helping out with the positive attitude...and I think your neighbour is a 💫star to be your gardening with lupus helper. Your garden sounds perfect to me! Take care, keep pacing yourself & keep gardening. XO🌻🍀
Oh to be nearer to clinics etc. When I moved here, it was from a3 bedrooms house, with huge garden. Bit of a shock coming to a flat. I feel it is like a posh hotel apartment. Just can't get used to no stairs. I still say to my 3 cats, "come on then, up the stairs to bed". They do look at me strangely but to be honest, they look at me strangely most days. I'm constantly talking to them, telling them what I'm up to and when they are going out!
Oh I remember, you asked me about sun/heat protection. Constantly have a hat on, IF I was outside when it's hot. But usually start pottering about about 7 pm. Think I'm known here as the crazy lady who likes plants (I talk to them too).
Take care and continue to enjoy your garden. 🌞 😸 🌞 😸 🌞
What fabulous ideas from everyone. I actually try to avoid pots at all and only water vegetables once a week (and newly planted shrubs). My main 'low maintenance' approach is to have most of our garden - one and half acres altogether - as a wild flower meadow. As the grass grows in spring, I mow (on the sit upon mower) a windy path through, my husband puts the bench at the end and then right through til mid/end June I have a wonderful walk - often early morning or late evening. I like the feeling of space and live in the Fenlands which is very flat with fabulous sunrises and sunsets. Veg gardening in 6 1 metre square beds - 1 has autumn fruiting raspberries and only needs cutting down in January - another has rubarb and the others I plant things that need least work - broad beans, shallots, early potatoes. Happy gardening everyone.
gosh, heatheric: i love your description👏👏👏👏👏...the mown path: v clever! and i feel we've got much in common: our garden is mostly a wild garden too: 20+ years ago, before we were able to get hold of the acres around us for the wood, we turned a rough 1 acre field of nettles with a dried up pond into a happier combo of meadow, hedgerow + sorted the pond so that all this is home to lots of wildlife & flowers...well, my husband did 99% of the work, really. and your veg+fruit growing sounds perfect too...frustratingly, due to all his crohns stuff (stricture etc), my husband has to stay off roughage..which means there's only me for fruit & veg...and i just gave up that side of things as my health deteriorated...+ it's tough to produce for only 1, especially when my version of lupus & co means IBS etc. but now am thinking:.time to try a bit of fresh produce growing again! we love the fens too: we're not far away in constable country. many thanks for your beautiful reply! 🍀🌻
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I have changed many things - Lupus may hurt me, keep me inside during most of the sunny part of the day. I, being a child of the 70's, have put several energy and water saving practices in place. My late hubby put in a rain catching and storing system using 55 gallon plastic barrells and 3 huge tanks, which I now hook my soaker hoses up to. We were having extremely painful water bills, his system relieved that. I've also cut down on the amount of annuals I put out, having gone to plants that return every year. I have a few ferns, mandevillas and alamandas in pots. The rest are in flower beds. I have folded, in that herbicides have pretty much replaced the hoe and mattock.
Diagnosis update for you all nearly a year on
Hello all been awhile 
help to find a consultant in london
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