I have this hope for making a healing center for ME/CFS

[jesse's mom]

Perhaps therapy llamas?

I love llamas!!!! We were at the little zoo here, and I wandered off from my family because there was the BIG llama just starting at me. There was a funny steer in the same pasture, the steer had his horns stuck in the wire fence. I went and steered the steer's head out of the fence by grabbing the horns and moving his head. The big ole steer looked in my eyes and tangled his horns right back up in the wire!

The llama walked right up to me looking in my eyes; it was a little intimidating! I thought he was going to spit on me or knock me with this great head! instead he made me pet him by rubbing against my hand, like a giant dog! When we left the zoo his pasture was along the driveway out of the park. He ran beside the car looking at me the whole time. I miss that llama!

And a Humor room?!

Who volunteers a shift for personing that area?
Because you are actually smarter than spellcheck @Shoshana !
and I would be in the humor room all the time, not to volunteer... to soak up the laughs!

(Why does my spellchecker not like that word? )

 

[Raven Mom]

@Ineedausername , All of the pools I know of down here have converted to salt water pools. We would need an indoor and outdoor with shaded areas for the outdoor one.

yes, and lots of healing plants for the air around the pools. a couple of heated stone floor pathways to it,, even if the prospect of the whole surround being stone would be too expensive.

I feel it's important to think tiers: so, for those who are only mobile in wheelchairs or on scooters, some kind of hydrotherapy path like a healing, adult version of a children's waterpark...light water from above here like a waterfall with trailing vines beside, then a little ways along the path more massaging streams of water interspersed from behind a balloon of a big flowering bush, and so on. then, for those moderately mobile, small pools to move small ways in. but lap-length pools for those who can manage. then, the same principle applied to walking: wide wheelchair-access paths of diverse views but flat... mildly rolling mid-length paths for moderate-walkers.... full-on hikes for those blessed few who've won through. vive la différence!

 

[jesse's mom]

@Raven Mom , that is a great idea, It sounds lovely in every way! I think the whole layout could be laid out in maybe a spiral design I think that would help everything be closer, with a central hub being nutrition, medical, and education, then rooms, then recreation on the outside.

I say you have the flora planning along with any one that signs up, and of course the green house anyone could work or go to classes. Many plants we can use in the meals.

 

[Raven Mom]

@Raven Mom , that is a great idea, It sounds lovely in every way! I think the whole layout could be laid out in maybe a spiral design I think that would help everything be closer, with a central hub being nutrition, medical, and education, then rooms, then recreation on the outside.

I say you have the flora planning along with any one that signs up, and of course the green house anyone could work or go to classes. Many plants we can use in the meals.

oh! along with any others who gravitate to plants, I accept a co-role plants from seeds gathered from plants seeded by one's peers, + so on ...+ on. rose-petals, nasturtiums, borage flowers that you meditated near or drew/painted as part of art-therapy sprinkled through salads, on chia-seed pudding bowls, in transparent tea-pots... eventually kneaded back to ground as part of practical, ergonomically-sound composting program.

for a field-trip for @Shoshana 's humour room~ a cactus labyrinth for when you're feeling 'prickly' with a spot for tea ceremony in centre ---flat river stones with iron pot filled with soothing aloe, sweet agave: the healing things found in the core of tough, ragged exteriors.

there are so many possibilities!!!!

 

[jesse's mom]

there are so many possibilities!!!!

And so good to dream of it all!

Anyone who sketches I would love to see some visuals on anything that excites you!

I this this is good therapy in itself for us right now! It is art and creative visualization.

 

[andyguitar]

And a fleet of all terrain wheel chairs so you can explore the woods looking for creatures. Maybe big ones of these

 

[jesse's mom]

And a fleet of all terrain wheel chairs so you can explore the woods looking for creatures. Maybe big ones of these

YAY!!!

 

[Shoshana]

At our new center that @jesse's mom and we, will be designing and going to, we will all be acceptable, in whatever shape we are in.

I wrote that part of a post, in a different thread,
then I decided I wanted to share it here too.

I do benefit from imagining this place.

At some moments, last night,
I was wanting to be another co-plant planner, with @Raven Mom and others,
and to include plants that attract hummingbirds and other species of wild birds and other wildlife.

I am unsure whether we wnt to include plants that attract hornworms, a caterpillar, that turns into beautiful butterflies, yet while in the caterpillar stage, it eats a LOT of plants, plus it's a strange, monstrous gooey, scary-looking, yet very colorful type of creature.
We could all have a say on whether to try to attract them or Not?!

 

[jesse's mom]

I think a good balance of everything would be wonderful! And lots of butterflies sounds like a dream.

I am also going to include designing a easy access salon and well trained compassionate shampoo techs and hairstylists if we want them.
In the other tread I also mentioned a group discussion of self acceptance and I think compassionate communication classes.
*for now there is a book by Marshall B. Rosenberg PhD called Nonviolent Communication that I am studying right now... slow reading, but if you are a caregiver or have a child with ME/CFS, or autism it is really good and helpful.

 

[YippeeKi YOW !!]

He ran beside the car looking at me the whole time. I miss that llama!

Like you, I just love llamas, and that's the best llama story eeever ....ever!!!

We need a llama emoji. And a moose.

 

[YippeeKi YOW !!]

@jesse's mom
This is a terrific thread .... thank you for posting a link. I'll be back to read all of it shortly, right now energy is fading and I think I need a little lie-down ... .... after which, I'll be much much better ...

 

[Shoshana]

I also mentioned a group discussion of self acceptance and I think compassionate communication classes.

Compassion Communication; and showing/expressing, and giving Compassion......, includes toward others AND, toward ourselves.
Sign me up for the classes.

(I put "class" and then realized it would take more than 1 class for that subject
AND, that we would want to break it up, anyway, into many very tiny, short classes .

 

[andyguitar]

As we say over here 'this idea has got legs'. There are respite centers for other health problems so I dont see any reason why there cant be some for me/cfs. As i am from the UK I am not familiar with how these types of places operate in the USA but I suggest looking to see how charities for other illnesses manage their respite centers and using those ideas as a template. This is very theraputic thread. Good ideas and intentions. 10 out of 10.

 

[jesse's mom]

Thank you @andyguitar , I know my father has done a very small school that will be a boarding school in NOLA for adults with severe Autism and Down's Syndrome, as my half sister has both these issues. It truly has been a ton of work for the board of 6 people. The fundraising is mostly $1,500 dinners, art sales, and donations.

I can ask him if we have any state or federal monies for things such as this.

I am going to continue to work on my health and keep this dream alive in my heart! It really makes me joyful to think about the whole process from building this to being there with others.

I imagine the young people who get sick and their parents coming and learning and meeting others, and it actually bring tears to my eyes.

It feels so good to have a dream, even a pipe dream!

 

[andyguitar]

Dream BIG

 

[jesse's mom]

What do you really want there @andyguitar ? An acoustic music area in the outskirts maybe?
I was falling asleep last night seeing all the buildings laid out in a spiral with the meal area in the center. Rooms for the sickest the closest in, and the areas that could be noisier grouped on the outside of the spiral.

You know those shade canvases that they attach to trees for large shelter areas?

I mean it! I dream!

 

[jesse's mom]

I want a labyrinth made of rocks to be there, in one of my remissions I got better by walking one of these. The one I walked had lots of small rocks at the beginning and one could pick up a rock, then hold it and hold an intention in your heart/mind and when in the middle put the rock on the pile. That was so COOL!
https://goo.gl/images/2vb77K
This is the one I walked. I like this one because it is small and doable. Plus of you get tired you can step over easily.

 

[andyguitar]

Yes @jesse's mom an area for quiet music performance would be good.

 

[Shoshana]

group discussions on self acceptance and salon shampoo bowls that are wheelchair accessible!
I was able to do that during my career, If one can sit in the easy shampoo chair and relax it is not taxing!

imagine the young people who get sick and their parents coming and learning and meeting others, and it actually bring tears to my eyes.

It feels so good to have a dream, even a pipe dream!

I was falling asleep last night seeing all the buildings laid out in a spiral with the meal area in the center. Rooms for the sickest the closest in, and the areas that could be noisier grouped on the outside of the spiral.

It's a wonderful dream. Let's dream it.

 

[Loomcgoo]

I was told about this thread, thank you @YippeeKi YOW !! , what I've copied and pasted below comes from a conversation in another thread. It was one where we discussed restorative gatherings (basically an ME/CFS retreat) which helped me when I was floored by a sickness bug (which set me back a lot). It occupied my mind and gave me a place to go to in my head as I waited out the hours, days and weeks. All ideas are welcome, the more we describe and add to it, the more people can escape to an imagery place which is just right for them.

It's also a way of us being connected, where we are supporting each other. We can't do it in person but we can do it through imagination, and in a way that is just right for us. It can all be add-ons to a retreat. One where we are understood, accepted, supported and allowed to be regardless of how haywire our bodies are.

I have copied the messages that were written some time ago. They are below.

Wolfcub said:
It would indeed be nice to have some magical healing sanctuary we could teleport to when we feel lost and alone and pretty horrible ! I often imagine a kind of garden/woodland area with soft breezes, and all kinds of gentle treatments, aura healings, tasty drinks we can sip, that restore energy gradually. Quiet and understanding animals and birds, people who know and understand; who have smiles and words of kindness but who don't make a fuss.

A lounge with a roaring fire would be nice....or for those who are in a heatwave right now...a cool space in a woodland clearing, with branches to cast welcome shade.
I later wrote...
" I had a dream where we were all together in a lovely wooded area, there was a trickling stream nearby. Some folk were talking quietly and those of us that didn't have the energy to speak could just enjoy the gentle chatting. Instead of being locked and isolated in my world of illness, I was able to be ill and be part of a healing place and soak in the social atmosphere without having to use any energy.

As it got darker a fire was lit and there were soft glow fairy lights, big comfy beds. I could see the stars through the trees (although that'd only happen in dreamland), the fairy lights etc somehow disappeared when I wanted to see the stars. It felt like a real place of restoration, understanding and gentleness.

Perhaps we should dedicate a thread to "Restorative Gatherings" where people can write about what they would benefit from in an imagined world. Especially for those who access the site but can't post, it would be a shout out to all CFS sufferers everywhere to be part of something with no pressure. People can then escape into the imagined CFS gatherings that appeal to them without any pressure, and hopefully have new imaginings that provide a distraction and comfort from the daily grind (CFS really is a battle)." End of quote

Hopefully, if you're reading this it'll spark your imagination and take you to healing place in your mind, one that is right for you. For anyone who has the energy, please describe and share any ideas, scenery, therapy, activities etc that you would have at a retreat or restorative gathering. May you be transported to a place that feels comforting, safe and restorative, if I win the lottery I'd definitely create an ME/CFS retreat.