Sometime ago, we received a wonderful handcrafted postcard from Noa (aka Chenoah) in Germany. On it, she mentioned the struggles of living with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome), a debilitating chronic illness. She also mentioned how Postcrossing is an outlet for her creativity and helps her connect with the world while being housebound.
Over the years, we’ve heard from several postcrossers with similarly serious conditions, about how important this activity is for them — sometimes on aspects that hadn’t even crossed our minds. So, in an effort to raise awareness about these realities and understand them a bit better, we’ve asked Noa a few questions about her life and her interaction with the world through Postcrossing.
- For someone who doesn’t know, what is it like to live with chronic fatigue? What are some of the challenges that you face?
When they stumble upon the word “fatigue”, healthy folks think of being tired… but clinical fatigue is more like an overwhelming exhaustion that healthy people don‘t experience. You’re so exhausted that you might be unable not just to move (thus leading to muscle weakness) but also unable to even grasp your own thoughts or speak. It’s not something that can be relieved by a couple of good nights of sleep or even a few weeks’ long holiday. It’s an exhaustion without a cause, that leaves you totally drained.
For instance, when I brush my teeth, I need to rest for a while afterwards, so that I can then attempt to slowly eat breakfast. And when I don‘t let myself have a break afterwards, digestion won‘t work well or even temporarily stop entirely. So it’s the little things that most people won’t even consider tiresome, which wipe me out entirely.
It’s hard to be taken seriously by doctors (especially as a twenty-something female), and it took me 8 years to arrive at an accurate diagnosis and to find a physician willing to treat me. And naturally, until your condition has been diagnosed, it’s hard to get health insurance companies to help. Besides these more technical things, are the very personal ones. I‘m relatively isolated. My regulars are my husband, my substitute carer friend, who lets him off duty for two hours each Friday, and my physiotherapist who does house calls.
Nevertheless, I am still fascinated that I have someone by my side. The more ill you are, the less opportunities of meeting people there are. Visits are a rare highlight, because they exhaust me terribly, and the same goes for phone calls. One friend is allowed to call on a regular basis. She‘s a “spoonie” too — which means, someone with illness that comes with extremely raised fatigability and difficulty in recovering energy. It‘s a whispered call with long pauses and lots of muffled laughter. Sometimes we cry together, which is a good thing. And then we laugh some more, because her jealous borderline-narcissistic cat Romi is screaming like an infant to get her attention.
- How does Postcrossing work for you? What can you do yourself and on what parts do you help with?
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Everything I do is slow and there are lots of interruptions, because I need some rest, but I am glad that the website is very well structured and I‘ve never lost my way so far.
Picking a card is a long process. I start with reading the profile and getting a feel for the recipient, sometimes looking into the favorites. I obviously can’t go out and shop for postcards, which I loved to do. I do have a huge stash, but walking to the boxes can be “iffy” and involve some help. Usually I end up in bed again, with 3 cards and the final decision postponed for after a break.
A concept or decoration will be thought up and I very consciously give my love, my time and my precious energy to the postcard. Art and creativity is totally my thing. I have found materials and ways to draw and paint in bed (I love water soluble crayons!), and I‘ve sent out some original artwork before or crafted cards using a print. My first two professional cards are in print at the moment, which is really exciting. They are published by a cooperative supporting initiatives helping people in all kinds of disadvantages, locally and globally.
Writing the Postcard IDs can be a little tricky, as my short-time memory is very impaired. My solution: I rap or sing them. This way, I manage to write four digits at once and the rest in a second go. Same goes for when I need to register the cards I receive.
My postcards are brought to the postbox by my husband, or the other two regulars. Even the physiotherapist has been my Postcrossing assistant a couple of times.
- How does postcard writing help with some of the challenges?
I‘ve always been pretty active and busy… but no longer being sure that you can finish a certain task in time, is definitely not a good feeling. In this sense, a postcard can be quite therapeutic: it‘s just a piece of cardboard with an empty space, that even on not so good days looks manageable. I am able to take a postcard, hold onto it, focus my attention on the task of sending someone else a greeting. Though that might not sound like much, it actually is.
I‘d been studying psychology, when illness struck, and I am well aware of how easily chronic illness can lead to depression. Helplessness and desperation together are a really dangerous mixture. Being active changes your perception of the situation. You’re not as much at the mercy of your illness, but a human being doing something.
There are even some growth opportunities in Postcrossing. I don’t like profiles that are very demanding or defining what "real postcards“ are, or those that are mainly about collecting. As I have no way, to fulfill all those demands, in the beginning, I felt horribly cornered and was quite close to throwing in the towel. Now I am able to send them something made with love, time and more effort, he or she can imagine. Who knows when they last have been properly loved on. And of course I learned to let go, once I‘m done. I am not responsible for the happiness or contentment of another person. I try to do something for my recipients, the rest is entirely up to them.
- What is your favorite part of the Postcrossing process?
I love how it allows me to re-enter the world. In average years, I leave the house like five times a year, mostly to go to doctor’s offices or clinics. I‘m no longer able to watch TV, listen to radio, or be on social media, so the world I formerly felt part of, seems now very much disconnected. I‘m 42 years old now, but do often feel a culture shock not unlike someone who has been imprisoned for a long time when I am confronted with developments, topics, … I have no knowledge of or experience with. And I do have an urge to know about the world and it‘s people, as well as be part of the world.
I‘m scared of disappearing from the public eye so entirely, that I‘m kind of buried before I am actually dead. And despite my limitations and my little overall energy, the quality of this energy is very much alive and I am not planning of changing something about it. It just feels warm and fuzzy, to be able to share it with some random stranger friends. I‘ve been blessed with a few even becoming friends. We communicate per mail and email.
The postcards I get are like colorful specks of the world I miss so badly. We Germans even have words for it, “Fernweh” and “Weltschmerz”. I think, self perception happens almost always in the context of the world or groups of people you chose to surround yourself with. Isolation is a bummer and has you redefine yourself without the world… but I wanted a context, structure, a frame. And there came a welcoming rectangle, called postcard and invited me, to fill it with whatever makes me me.
And so the world, even though still very pixelated, is becoming perceivable again. Which makes me feel very grateful. Thanks a lot Postcrossing!
- Do you have other hobbies or causes that you are passionate about?
I want the world to become a fairer and more peaceful place. And of course, to keep the world inhabitable, so I always try to not rush into decisions, but to be conscious and make as many healthy choices as possible. Anyone can help. I’ve got a small amount of money invested as Kiva loans, and I think of it as a human investment. My gain is, that I helped getting someone come closer to safety and being able to support a family.
I love animals so much that I am the godmother of Frederik, a teenager pig, growing at light speed. He has done the unthinkable and jumped off a pig transporter, only a few hours old. And he survived. I’m still completely in awe. I support Hof Butenland, the sanctuary at which he is at home now. (It’s a senior facility for former dairy cows, but they do have some other animals too). I am vegan, as best as I can under my given circumstances.
Then there is music. I’ve always been a musician and my wonderful husband and I formed a bond over immediately clicking musically, grooving and improvising including vocal harmonies, as if we had done this for ages. He is now my main carer and burdened by my illness as well. We still attempt to do one concert per year, and I sing and play strapped to my wheelchair, with my legs propped up onto a piano stool, to minimize the risk of losing consciousness. Of course, health-wise it’s a tremendously costly passion, but for my soul, it is sheer bliss because it really is my husband‘s and my favorite way of being a close unit. And we always transport messages and support causes with our concerts. So this is not just music: it is speaking out, being heard, contributing to a world and global society that is more just and fair than it is currently.
I am also an ME (Myalgic Encephalomyelitis) advocate, and I became a crochet artist when I became bedbound. And I‘ve made about 130 small dolls, called MEmis for fellow ME sufferers and a few others in need of some comfort, love and connection. Each doll is one of a kind and was made especially for this person. This project is coming slowly to an end, as I‘m no longer able to use Facebook, where many MEmi recipients are connected and where I received most requests. But as some even have their own blogs or social media, it seems to live on. Most “live” in Germany, but about a dozen is scattered all over the world.
This is still just a fraction of my interests and passions, as I am easily inflammable when it comes to enthusiasm and joy. And my dedication, once formed, doesn’t just go away.
Thank you Noa, for putting so much of your precious energy into this interview! ❤️ If you have some minutes to learn more about ME/CFS, we recommend this TED talk.
59 comments so far
I wish you all the best in 2020 and beyond !
Wow! That is such a courageous thing to do - to be able to connect with the world despite your condition. It takes me, a healthier being, a pause and appreciate what I rush out to do, even on official postcrossing exchange! Thank you and may the good Lord bless you and the people around you. I wish I can send you a postcard officially in the future.
Thank you so much for sharing. This is one of the reasons that i joined Postcrossing; to be part of the bigger picture. I am so glad you have not "throw the towel in", so to speak and find ways to be creative and participate in the world around you. So happy to have met you:)
Thank you Noa, for sharing your life story with us. I'm hope that I get a card once from you. I have patience.
Meiadeleite and others on the Postcrossing team, thank you, thank you, THANK YOU for this amazing spotlight. This story is so inspiring and really helps us connect and see a larger side to the world around us. It is amazing that someone that is limited in what she can do perseveres so much and is successful and THRIVES!!! :) Also great to see a post about a fellow handmade postcard enthusiast. :D
Noa: Please never lose hope. Life is so special and it is one-of-a-kind. Never lose sight of what you love, because there's so much more to it!
Happy postcrossing, everyone, and thank you for being part of this community.
Noa, my dear sweet friend, even though we write to each other about our lives, this article has given me even more insight. You amaze me and I so appreciate our friendship and being pen pals. I feel blessed and grateful that you and I have become such great supporters and that postcrossing has brought us together across the world. Thank you for sharing such intimately detailed moments and letting others see how a simple postcard can change an outlook....it has helped me during my recovery from strokes and knowing someone like you has helped me look see another perspective. You simply are a wonderfully warm, thoughtful and incredibly
strong woman. And I am proud that you are my friend.
I have a disability too, although I do not have nearly as many health limitations as you do. I also use Postcrossing to connect to the world, as I can not travel or get around like I used too. I have chronic pain and Postcrossing has helped me forget about my pain (as much as I can) and to redirect my thinking and my feelings toward something positive, not only for me, but for others as well. Like you said so succinctly, it is so easy to feel depressed and/or isolated when your health limits what you are able to do.
Your courage inspires me! Thank you for bringing to light what all of us with a disability struggle with to some degree. My heart goes out to you dear one. I hope you will have a wonderful year full of creativity and love.
I appreciate the time you took so that we all can know you better! I’m so impressed with your lifestyle- that you stay committed to bringing joy and love into the lives of humans and animals. I’m vegan as well so your efforts to help animals warms my heart. I will be thinking of you as I write my own postcards... thanks again for being the artsy human that you are. You make a huge, joyful difference! Peace Noa- Ramya
You are such an inspiration with a beautiful soul! And I love your artwork!
Wow, thank you for sharing your story with us! you're an example for all of us!
Hello Noa, thank you for your life story. What a beautiful cards you make and I hope to receive one some day. Many greetings 🥰
Noa, thank you for sharing your strengh with us and congratulations for your creativity!!! Great spirit of encouragement for other people struggling with difficulties.
I wish a new year full of joys! :)
@Stillsmiling : no doubts people who are on Postcrossing with love are part of the bigger picture!! <3
Good morning, lovely humans, stranger friends, friends!
Thank you for your kind words, wishes, appreciation. I feel seen in the best way possible.
Waking up to this makes this morning very special. I wish you all a wonderful year, blessings and opportunities to grow. And of course as much health as possible under each given circumstances.
Shalom (peace) and warm greetings on a cold winter morning.
Noa
Good Morning, dear Noa. I had the pleasure of sending you a card, not too long ago. You are definitely an inspiration. With my 'simple' fibromyalgia, let's call it the smaller sister of ME, I realize how 'lucky' I am, compared to you. Postcrossing is a great medium and I thank the PC team for conducting and posting this interview!
Good morning, dear Noa,
Since we have "known" each other for some time, I felt connected to you through this wonderful contribution.
You are simply courageous, admirable, yet curious
I wish you many good days in 2020 when you can smile.
All postcrossers a happy and especially healthy 2020
wishes Manolya
It was so interesting to read your story, Noa!
Thanks you for sharing your feelings and thoughts with us.
Good luck and a lot of beautiful postcards to your mailbox!
- from Russia with love :з
I wish you health and happiness this year. Keep up your good works. Peace.
Thank you so much Noa, for using your precious energy on this. It resonates so much with me as I too have severe ME. I am 41 & am also mostly stuck in bed. I have been like this since my teens & your mention of the world moving on while you’re stuck behind was something I particularly related to.
I am new to postcrossing & am severely limited in how much I can participate but that makes each card all the more precious. Each card is a window to the world for me. I wish you all the best & thank you! 😀
I wish you all the best for 2020!
Your cards are wonderfull! People don't realise how much effort has gone in your cards. I hope one day my adress will be picked by the computer and I hope you'll get a lot of lovely postcards that will show you the world.
I absolutely love my sloth card Noa. One of my all time favorites <3. It's nice to see a homemade card maker getting some love. Sending healing vibes your way.
Thank you for allowing us to know you, Noa, and thanks also to Postcrossing for this wonderful Postcrossing Spotlight about Noa.
You are truly an inspiration, Noa, and clearly a wonderful human being, full of strength, courage, and compassion.
I wish you and your husband abundant blessings and many moments spent in joy, discovery, and growth.
Thank you Noa, for letting us have a glimpse into your life. It makes me appreciate more what I can do all day! I love your card, it shows so much light , I am sure it is somehow representing your wonderful character.
All best wishes to you!
Noa, dear friend, i got your mail last night, but only now i could translate and read the blog entry. my ME(CFS) is triggering me a lot right now.
And now i'm happy that a blog entry was dedicated to you. my sister brought me to postcrossing and then i infected you with it :-). And now you motivate and comfort me with your post - in many ways it is a wonderful exchange of energies.
Your self-made cards are wonderful, your MEmis anyway (greetings from MElinda!).
Thank you for letting us Postcrossers participate in your world, and thank you for making our painful disease ME(CFS) known in this way as well
Noa, liebe Freundin, ich bekam gestern Abend deine mail, doch erst jetzt konnte ich den Blogeintrag übersetzen und lesen. meine ME triggert mich gerade sehr.
Und nun freue ich mich, dass Dir ein Blogbeitrag gewidmet wurde. meine Schwester hat mich zu Postcrossing gebracht und dann habe ich dich damit angesteckt :-). Und nun motivierst und tröstest du mich mit deinem Beitrag - es ist auf viele Art ein wunderbarer Austausch von Energien.
Deine selbstgemachten Karten sind wundervoll, deine MEmis sowieso (Grüße von MElinda!).
Danke dass du uns Postcrosser an deiner Welt teilhaben lässt, und danke dass auch auf diesem Weg unsere leidvolle Krankheit ME(CFS) bekannt gemacht wird
Mein Deutsch ist nicht so gut, aber ich möchte etwas sagen. Ich bewunderte Noa, ihre Begeisterung, Zuneigung und Fürsorge. Sie ist definitiv ein Licht für Menschen, die schwierige Dinge im Leben erleben. Vielen Dank Noa für die Inspiration...
Much love to Noa and the beauty she brings to this site.
Thank you, Noa, for sharing your story, and thank you to Postcrossing for bringing it to all of us. I hope I get to send you a Postcrossing card someday!
I once received a lovely, lovely postcard in a green envelope from Noa, which was so exuberant and lit my day. She literally met all my requests, offering me used stamps, sharing her favourite cartoon with me, and specially choosing a "Fix & Foxi" stamp to mail. Through the card I'd see her really enjoying PC, enjoying life and always being inspiring. Thank you Nora for all the gentleness and beauty you brought. Wish you and your family a happy and prosper 2020.
Thank you for sharing your story and raising awareness. Continue to find joy in what you do, it matters and so do you!
extremely good read.I know of this condition and a few other medical conditions that postcrossing can help.I did initiate the process of learning via postcards in my city.I am looking for new inputs of people. I have the other resources.Can you imagine I have to often leave Malaysia, the country I am in and go into Singapore by bus to locate like minded people>.I have my own blog for any card preview.Postcrossing is the need of the hour for everyone and cannot be resisted much like Vanillla ice cream cannot be resisted.
I love her tenacity! And her handmade cards are gorgeous, and this is why I would never say, no handmade cards. You might miss out on something like this!
It's amazing just how much we all take for granted when we are in the full of our health and let's be thankful for it. I had a 'scare' a couple of years ago and I fully appreciate just how much Postcrossing did for me during this time so I can understand a little how much it does for Noa and I'm sure, for so many others.
Thank you, Noa, for telling us your story and for sharing your thoughts. Much joy &
luck to you and your family.
Good luck and good health Noa.
Speechless
Definetly Postcrossing is bless for us.
Thank you, I‘m totally blown away by your kind and thoughtful comments. Thanks for the good wishes as well. I wish you what you need most!
Congratulations, Meiadeleite, on another remarkable and inspiring addition to the Postcrossing Blog. One of my favorite things about Postcrossing is "meeting" other members, and reading Noa's story was very special. I remember seeing Noa's comments on at least one other Blog story, too.
Noa, I was especially interested in learning that you and your husband keep music in your lives. Music is indeed "good medicine" and can offer much JOY...something I wish for you both Happy 2020 and continue to enjoy Postcrossing.
Thank you. That's all I wanted to say. Thank you.
(I live with MS and one of my several symptoms is fatigue. I don't suffer from it to such a severe degree, but I know the impact it has on someone's life. So once again... thank you!)
What an inspiration it was to read this interview! I am in deep admiration of your spirit and the intention with which you live your life. It is also helpful for me to hear your story so clearly expressed. My son and wife have chronic illnesses and it helps me be more understanding of their situations and, in turn, empathetic toward them. I dearly hope the Postcrossing gods will see fit to have me send a postcard to you in the future!
~Andy K. from Santa Cruz, California, USA
Noa, You humble me! To be so joyful with such an awful illness, you are an inspiration. Your artwork and your words are beautiful. I forget how much I have to be thankful for, but you helped me to remember to be grateful. You've also enlightened me about how these postcards are so much more than just that - how they can be so meaningful. Thank you for doing this interview. I hope I get to send you a card - I already have a sloth one you'd love! Debbie from Ohio, USA
Wow Noa. I read your story very closely and it made me realise my problems are so minuscule in comparison. I think anyone would be so privileged to receives one of your works of art. You are incredibly inspiring, and I better get my act together. Thank you for sharing such personal and insightful thoughts.
Thanks for sharing your interview, Noa. I wish you a happy and creative new year. Your art style reminds me of the great Austrian environmental artist, Hundertwasser!
For anyone who's interested, check out this powerful doc on living with Chronic Fatigue Syndrome:
https://www.unrest.film/
I was one of the lucky ones to receive such a wonderful and special set of cards from Noa, she surely made my day, well problably my whole month. So very creative and so well looked into my profile! She stimulated me be more creative myself also. Wonderful.
think big and think beyond your sight far far away. imaging that you are bird who fly above vast forest and mountains, you will be better then.
Beautiful postcards, and a beautiful, inspiring interview. Happy Postcrossing, Noa, and best wishes for the New Year!
I love, love, love this spotlight. Thank you, Noa for giving so much of your precious energy to it. Thank you for being so honest and raw and let us be part of your everyday life. Your writing is beautifully, you do have a talent there. Maybe I'm lucky and will receive a card from you once. I'd love that!
Sending you a drawer full of spoons which you can use at your concerts.
<3
What an inspiring story, and thank you for sharing it, Noa. I'm glad that postcrossing brings you some joy, and I hope that a cure can be found for this devastating condition one day. I did not know of this disease, and so I read more about it and learned: Between 836,000 and 2.5 million Americans suffer from ME and estimates vary from 17 – 24 million people with ME worldwide. Staggering!
Hope you will find many lovely cards in your box in 2020, and how special it will be for someone to receive one of your lovingly-created cards!
I'm impressed! you are a beautiful woman!
OMG those are beautiful!!!!
Maybe start your own postcard business!!
I would 100% buy them :)
Wish you the best happiness that Ihat everyone is looking for and beyond♥️
Wow ,what a story & to think that we are all the time complaining about some trivial thing or other ! Noa hats off to you for sharing your thoughts & images . You are a fine artist & your crochet work is lovely ! That you can keep your spirits up inspite of all the pain from your condition says a lot about your resolve . Happy Postcrossing Noa !
-Ravi Cavale (India)
Cool Noa, greeting from Indonesia
Great
than you #postcrossing 🌧🌧🌧🌧🌧📚📚📚📚
Such a lovely story! I love all the ways postcrossing helps make connections around the world between people. Wishing you all the best in 2020, Chenoah.
Thank you Noa for this lovely interview. Considering how much energy small tasks require from you, this in-depth interview shows me how much effort you made for this.
I had burn-out in 2017-18 and was on sick-leave for 10 months. So I can understand how even small tasks can be overwhelming. Luckily in my case that was treatable and I am back at work again although I had to learn to create space in my day or week to "recharge my batteries".
But even during that time my sickness never reached such a level as your ongoing illness. Yet I can relate to how that can feel - and also how music, crafts or anything creative can bring so much positive energy to one's life. I never stopped with postcrossing while I was ill, because I received so many positive vibes and I am glad for all the people with health issues or other challenges in their lives that can draw strength and happiness from one of the best sites in the world wide web...
Wishing you all the very best!
Dear Noa! All the best from us! I read your story and for me Postcrossing is living and beeing in contact with the outer world. Due to the severe illness of my husband we' i. e. Our youngest child' we got three' and me are every time looking forward to open the letter box to find a colourful postal card and get to know where it comes from and what kknd of person wrote it. Although i can go out with our dog' go to work and study...this is for us wonderful help to battle against depression. The amount of our friends has been reduced as my husband cant do anything and battle the second year against his cancer and tiredness...since November last year he couldnt work anymore. So i know it very well what you have written ...take care and all the best for you and your husband 😃😍
My wife has CFS, so I can understand where you are coming from. It is good to stay in touch with people as much as you can. One day a cure will be found.
Thank you for sharing your story. I have Anti-Synthetase Syndrome (polymyelitis with lung involvement) so I truly appreciate all that you go through and how important this hobby is. It is important to me too especially after my diagnosis. Keeping in touch with people, even if we don't see them walk through our front door, makes such a huge difference. All the best and wishing you a Happy Mailbox!!
Thank you for sharing your story, that must have taken a lot of energy. I love your postcards! The time and energy it costs you to make them, makes them worth so much. I wish you all the best for 2020!
Nice story!
I've received this official card from Noa on the last year.
https://www.postcrossing.com/postcards/DE-8252914
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