chronic fatigue syndrome and outside space design
January 11, 2017 1:02 PM   Subscribe

I've been asked to redesign/change a large garden for a client with chronic fatigue syndrome/ME (or at least something that looks a lot like it - diagnosis is pending) - the garden was designed as a high-maintenance perennial space - my aim is to retain as much as possible while lowering maintenance but there must be more that I could do so my client can continue to enjoy the space.

While I design spaces for all kinds of uses this is an unknown unknown to me - also the client does not yet know enough about her limitations - it's hard to conduct a client interview as some painful realisations can be awakened and I don't want to go there - would rather they bring it up in due course as the design progresses.

I've been reading about ME/CFS but have found little on environmental preference and changes in cognition that may occur and how to prepare an outdoor space beyond the standard items in, for instance, a space for elderly or disabled (ramps, smooth transitions, understandable colour changes and so on). I have found this: Perceptual Disturbances:
Less ability to make figure/ground distinctions, loss of depth perception or inability to focus vision and attention.
One may lose portions of the visual field or one can only make sense of
a small portion of it at a time.
ME/CFS: Clinical Working Case Definition,
Diagnostic and Treatment Protocols. J Chronic Fatigue, Volume 11, Number 1, 2003. , and have yet to closely-read the article.

What are your experiences of CFS/ME type disorders either as patient, treatment-provider, or spatial designer re changes in perception - colour, sound, sense of smell, spatial-perception, depth-perception-especially at 30-40metres, touch, social comfort is private spaces?
posted by unearthed to Health & Fitness (11 answers total) 9 users marked this as a favorite
I have a different debilitating condition that impairs my eyesight, energy levels, yadda.

I would want you to be sensitive to the fact that some plants can cause a bad reaction in me and I don't do well with handling chemical fertilizers. I would want a drip irrigation system and anything else along those lines so the space takes care of itself as best as possible.

I would want a circular path such that I can go on a "long" walk around the perimeter of the garden on a good day, but where I can easily head back and cut things short when I am tiring more easily than I expected. So, trails or paths directly back at various points.

If the space is fairly large, I would want multiple seating areas so that I can sit my sorry, winded self down and catch my breath. This would make it vastly easier for me go out into the space and not just kind of mill around the back door. Having the ability to sit down every X yards (or feet) would be tremendously valuable to me in terms of expanding my capacity to use the entire space safely and without getting stressed about being unable to make the return trip -- because if I can sit down repeatedly, it is just a matter of time before I am safely back. That's totally acceptable to me.

I would enjoy having the space designed such that plants create big blocks of shapes and/or colors from a distance and then when I get closer I can enjoy the details of the plants. This would be interesting to me and also help me navigate the space without getting confused.

Anyway, that's what occurs to me off the top of my head.

posted by Michele in California at 1:15 PM on January 11, 2017 [14 favorites]

Having some shade available is important. Sometimes when I'm walking it can become suddenly very important to get out of the sun, immediately.
posted by Corvid at 1:29 PM on January 11, 2017 [8 favorites]

I do a lot of large scale gardening as an amateur.

One thing that has been important to me as I grow older is places to sit -- lots of them -- and places where I can do a little easy weeding. So I have tree stumps placed around so if I feel like doing a little weeding, I can sit and do some, and I am careful with what I select that requires routine maintenance, like daylilies that need their flowers snapped off. I have two daylilies, but I will never buy more.

This essay was very important to me in considering the practicalities of aging in my garden and the choices I made.
posted by A Terrible Llama at 1:33 PM on January 11, 2017 [6 favorites]

Check your MeFi mail.
posted by firstdrop at 2:52 PM on January 11, 2017

Best answer: Hi there!

I've had chronic fatigue syndrome for several years now.

Good design elements to incorporate:

There should be a bench or seat every 12 metres. Bonus points if the bench allows lying down! Most people with chronic fatigue need to sit down between every 4 metres (on a bad day) and every 24 metres (on a good day).

Shade! - sun/heat can make exhaustion worse;

A bench in the sunshine - sometimes gentle sunshine lifts mood;

Protection from wind - even a gentle cool breeze on the neck/shoulders/lower back can cause significant muscle pain;

Wheelchair ramp rather than stairs - even if the person walks, stairs = knee pain and trip/fall hazard - and also they may walk now, but need a wheelchair in the future;

Avoid any plants with strong fragrances as these can be headache/migraine trigger. Also make sure the person can walk along the paths without plants brushing against their skin as this can cause skin allergies.

Ask the person about any plant allergies they are aware of;

A water feature would be VERY nice, but make sure it isn't too loud as this can be mentally exhausting and trigger headaches;

Make it feel as spacious and not-cooped in as possible - use plants to hide the walls as much as possible, to create the illusion of being in a much bigger or wilder space - so important if you're housebound! Landscapes in miniature would also be very welcome, as would fish ponds - as long as the person with chronic fatigue doesn't have to maintain the fish themselves!
posted by Sockpuppets 'R' Us at 4:30 PM on January 11, 2017 [2 favorites]

Incorporating a labeling system so your gardener can a) know what plant they're admiring and b) get reminders of what kind of care it wants. Many of us have trouble making new memories, so having labels available reduces that stress.
posted by Jesse the K at 7:36 PM on January 11, 2017

Response by poster: Thanks Michele - unless ME-type increases susceptibility to allergens my client should be ok as she's handled this mix of plants for at least 30 years, and fortunately it rains here - a lot. I really like the circular walk with quick home routes, and large, simpler colour blocks and frequent seating as mentioned by Sockpuppets & A Terrible Llama .

Sockpuppets - point taken re more shade, the garden is already walled with some medium trees set out from the wall so I have good bones to work with.

corvid, it sounds like the sun can suddenly overwhelm.

and firstdrop I'm still reading what you sent - some great ideas that would sit well here with everyone's comments if want to post them.

Jesse the K, I didn't even think of thinking about losing ability to make new memories.

Do any of you think allergens have become more of an issue as you've lived with ME-type i.e. allergic reactions to formerly safe substances (I'm calling it that for my notes)
posted by unearthed at 1:25 AM on January 12, 2017

Best answer: I deal with a chronic illness. I get dizziness often. Things that would be difficult for me would be patterns or anything that is too visually busy. Think checkerboard or zig zags. So I think any paths should be of relatively uniform color. Just too much small visual information can be difficult to process on a bad day. (Obviously, I don't know if the same goes for this client.)

I totally agree with a circular walkway. Maybe some points of interest along the way.

Definitely +1 for lots of seating/shade/weatherproof areas. Probably some really cushy stuff too. Even if it's a small stool, it's better than nothing if you suddenly get tired.

In general I would probably want as much privacy from outside stuff so I could go outside in PJs or whatever. But that depends on your space.

I wonder if a question that would help would be "What things out in the world do you find bothersome to deal with?" That could give you insight. Because the checkered tile thing comes into play in grocery stores, etc. Maybe they have trouble with perfume, etc.
posted by Crystalinne at 3:41 AM on January 12, 2017

My personal experience is that being sicker, exposed to more drugs and/or chemicals makes me more sensitive to allergens.

Two examples:

1) I have never been a huge fan of seafood, but ate it occasionally in my youth with no problem. At the end of my sickest year ever, I ended up in the ER for eating a single piece of shrimp. I rarely eat any seafood these days.

2) Sulfur problems run in the family. I normally have to limit high sulfur foods, like eggs. During my divorce, I lived with relatives who use a lot more chemical cleaners and the like than I do. While there, I began reacting allergically to eggs and had to stop eating them. After moving out, I was able to reintroduce eggs to my diet.

I will add that studies show that people with chronic fatigue who remain active and regularly engage in gentle, sustainable exercise (like walking) experience less pain and degrade more slowly and generally have higher quality of life. So you are doing a good thing here and a well designed garden that keeps them moving will likely dramatically improve their life while getting no real credit for the therapeutic role it can play.

posted by Michele in California at 12:21 PM on January 12, 2017

Response by poster: Thanks Michelle, it's good that your egg allergy disappeared later - from reading replies here and searching I found this -

Using Geonarratives to Explore the Diverse Temporalities of Therapeutic Landscapes: Perspectives from “Green” and “Blue” Settings - a long-term study of 33 patients with ME/CFS-type looking at what works for them in the outside world, so it sounds practical - this phrase leapt out of the abstract "participants conveyed a desire to shift from fleeting time to restorative time, seeking a balance between embodied stillness and therapeutic mobility." So I'll hunt out the fulltext of that next.

I've also found a discontinued journal (I don't know why it stopped though) - "Journal Of Chronic Fatigue Syndrome" which stopped in 2008, has some useful articles in more-or-less normal EnglishSpeak too.
posted by unearthed at 12:43 PM on January 12, 2017

Bonus points if the bench allows lying down!

I will second this sentiment. I sometimes cannot catch my breath without laying down. I am fond of wide, flat, backless benches. But run preferences past your client. They may need arm rests and a back in order to help them get back up.
posted by Michele in California at 1:39 PM on January 12, 2017

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