In the third of the Community Reports Series we ask what “what in the midst of chronic fatigue syndrome enriches your life”?
The lotus flower is a symbol of grace; what gives you moments of ‘grace’?
From walks with the dog, to working out in the gym, to eating half a tub of ice cream (or just a bowl for god’s sake), taking trips to the movies, vacations, nights out with family and friends, most of us have had to give up activities that gave us pleasure and helped take away the stresses of the day.
Take the loss of work. We complain about having to go to work and we love to talk about how bad it is, but the truth is that work can also be important refuge, a place where we can immerse ourselves in something else for a time. Alot of people don’t have that refuge anymore.
Even if the drug for chronic fatigue syndrome was discovered tomorrow it would be years before it would become available and that means that most of us are probably going to be stuck with this disorder for some time and that suggests we might as well start to getting good at making it as pleasurable as possible. Dr. Friedberg, a psychologist with ME/CFS, has recommended that people with ME/CFS actively search for ways to get more pleasure in life.
Don’t laugh. Depression is rife in chronic illnesses and if you’re not actually clinically depressed I imagine you’re not feeling too rosy about things in general. (How could you?) It’s natural to feel down when you have a chronic illness and it can take work to feel otherwise.
I remember reading a story of how the great pianist Arthur Rubinstein; crippled and rheumatic, late in life, would become transformed into a graceful being once he started playing the piano. Being ‘in the zone’ helped him enormously with his pain and fatigue.
What, if anything, gets you into the ‘zone’. What gets you out of chronic fatigue syndrome? What provides relief? What, if anything, do you do to treat yourself?
In a nutshell the questions is
What in the midst of chronic fatigue syndrome have you found that enriches your life?
Maybe there’s not much…maybe it’s some really small things or maybe you’ve found a real refuge from the worries, pains and problems of ME/CFS. Whatever it is, please let us know what enriches your life; it could help enrich others lives as well.
this is a wonderful topic and one I struggle with all the time I do enjoy reading but not much else gives me pleasure lately – can’t wait to hear other replies
This is a tough question. I find joy in music and gardening and being with the dogs although except for the music the other two are fraught with problems. I tend to wear myself out with the dogs and ditto with the garden. Even when the chores have most stopped I tend to more ruminate over how well the garden is doing than actually enjoying it.
I do find that doing exercises like “what am I grateful for” almost always pop out things that I’m grateful for. I guess what really gets me through the day when things are tough are exercises like that. Things that get me in touch with ‘being here now’; and the small graces in life – a pretty landscape, some yummy vegetables.
I must say I need to create an environment in which things like that can happen; if I work too hard, do too much ‘exercise’, it all becomes something of a blur. So rest and relaxation plus these meditative type exercises open the doorway to pleasurable meaningful experiences and I don’t have many if I don’t create that environment.
I can usually count on histories, though. I decided, as one of my ‘grand projects’ to read the history of the US from conception to present. I’m in the Civil War right now…it will take me years I can tell. I do like taking on projects and completing them – that’s satisfying and I’m sure alot of people miss that.
I also enjoy being immersed in the science of ME/CFS…its a real release…..
Yep, Cort, those things you mention are applicable to me, also. There is something about being surrounded by nature, the wild, (although, living here now, for the past year, in Las Vegas, it is certainly a different kind of wild!) that brings me out of myself. It is where I most clearly see my connection to God.
A different kind of wild indeed…ha! 🙂
My faith in God has been my mainstay throughout 33 years of having CFS. This belief that God is always with me, sustains me, and has kept depression a rare occurence.
I have also believed that CFS was not going to define me as a person. I am not CFS. At times, this has caused me to push waaay outside the “envelope”, but at least I feel that in all these years, I have lived a good life, filled with love, laughter, joy and a gratefulness that has kept me always looking for the gift within each difficulty. ( That, and an occasional BIG bowl of chocolate ice cream and a lovely glass of merlot!)
Thanks, Cort, for all you do for all of us.
Jeanie
That’s wonderful to hear Jeannie. I’m not surprised that a close spiritual connection can be very, very helpful….I see one as a way to help let go of the frustrations and upsets and fears that are endemic in chronic illnesses and maybe more so in ME/CFS. (I am reminded of the Canadian survey which showed such a high illness burden).
Thanks!
I take pleasure in so many things, sometimes when I’m a little down I have to remind myself of that fact. Making cards and craft projects is something I can do which doesn’t expend too much energy, but is creative and relaxing.Yoga is a release, some of the poses are beyond me but I do what I can, there’s no rush is there and I don’t overdo it. My rest periods taken twice daily are fun. I meditate and dream a bit and feel a little refreshed afterwards. Hope to get out in my garden soon, living on the edge of the New Forest in the UK means I see plenty of birds and occasional foxes whilst I’m out there. A little bit of gentle weeding, smelling the fresh air and the occasional sunshine is my favourite place to be. During the winter I read, craft and try to keep up to date with all the new info about cfs and fibro, education is power ! The more I know, the better I feel I can help myself [in theory]
Thank you Cort for all that you do for us, I have followed you for some years now and always wonder how you manage to pack so much into your life. Without you there might be someone else, but I don’t think they would have the same understanding that you have of some of the conditions we have to put up with. Everything you put into print is worthwhile and helpful and I’m sure there are many, many others who feel the same. We are very grateful 🙂
What a gorgeous picture of a lotus blossom! It’s radiant.
In the midst of ME/CFS/FMS, I’m first and foremost enriched by believing it’s no mistake that I have it. I accept this as my destiny, and so–like everyone else–I get to find the meaning in my life as it is. I take joy in emails and phone calls with friends on a similar spiritual path. (I’m afraid I’ve lost what little ability I ever had at making small talk, and I think that’s all to the good.)
I enjoy watching movies, reading about the latest research on ME/CFS/FMS, occasionally accompanying my husband to music get togethers, and especially lying in bed on my heating pad. I just love my electric blanket and my heating pad. And silence. And the dark. I can really appreciate all of those things in ways that I never could have before. Those, and being in the eternal present are the gifts for me.
When I feel especially bad, I take extra medicine and sleep as much as I’m able. Hot baths also sometimes help too.
I try to focus on others and not myself. Trying to help others get through the day, find solutions for them, provide a hug, give a cheer-up. That’s what makes me happy. I also find that having a close relationship with the Almighty is imperative to having the strength to get by day to day.
Issie
The same things that have always helped me to be happy are the same things that still do. My family: human and four legged, meditation, yoga, music, nature, life itself. Nothing has changed except the pace at which I can do things. I finally learned, after years with ME/CFS, to slow down and that only makes me appreciate everything more. I often take photos and that too slows me down and makes me pay attention to the here and now. In the here and now is where all the happiness exists! Going slower actually makes you more aware of the small and magical things in life like the difference between walking and driving by 60 miles an hour in the car. You notice a lot more and experience a lot more walking.
My little dogs.
My online group of ME/CFS/Fibro…um, thrivers. They’re supportive and funny and playful and real. My mini ME/CFS support group (five of us); we speak a truth there we might not want to speak anywhere else because even in isolation sometimes you don’t want everyone to know your business. My online autistic friends because they are earnest, forgiving, challenging, and funny. The various strangers I’ve met on FB and other online sites who have become online friends and in some cases, phone friends. The Internet is truly a blessing.
The few good friends, though they’ve moved far away, who keep me in their hearts and lives.
Mostly, I have a drive to know myself better and grow; that’s no doubt a bonus when life demands and provides plenty of alone time.
And I ought not forget that I have no real idea what enriches me to my core and keeps me going other than the well spring of joy inside of me that can’t be stopped for long.
I have been serious ill for 8 years know. What started as an outburning depression and Posttraumatic stress have later ended in Fibromyalgia and ME. After two years of beeing deeply depressed I sat on a bench att Kattegatt in Denmark, enjoying the fantastic view over the Sea. I just spoke a few word with God and asked Him what I, with all my limits because of the illness, could do to enrich my life? Quickly ONE word came to my mind. It was PHOTOGRAPHY! I’m a very creative person and I have tried a lot different in arts and colors, but never tried to photographed. I’ll think it was boring and nothing for me to do. But there in that moment at the Sea in Denmark this word landed in my heart and soul. Immediately I picked up my mobile with a camera in and started to photograph. After one weeks vacation with my husband in Denmark I got home to Sweden with thousends of pictures. I loved to take pictures and after a half year I could by my first own digital Systemic camera. In situation where I get really sick and tired I can take a little while and photograph in nature and make smaller adjustments in the computer, I have got both a lot of you and inspiration and strenght. I knew that this is my gift in this world and I wish that my photos shall give new hope and better mood for those like me are suffering daily with a sever illness. Now I’m selling my pictures as art and have my own blog and Facebookaccount – Gallery where I show my photos. This fill my life with so much joy and happiness. I’m also got my first dog, a sweet colliegirl. Soon she will be two years old. She ments so much for me!!! I’m also gardening little bit in my own garden. I have build my own small and romantic garden from nothing and now it flowering fantastic every summer. My life is rich when I have these opportunities to create and be out in the beautiful nature. Creating gifts, no matter what, opensup the soul and bring forth a lot of ideas, joy and feelings of fullfillments in life. I’m so thankful!!!
What great answers from everyone!
Illness can be a great teacher. I once read that “to goodness and virtue we make only promises, pain we obey”. To me this means that being chronically sick firmly nudges you in a psychologically healthy direction. So I’ve learned to not be such a worrier, to surrender without giving up.
Lately, I’ve been focussed on the brain inflammation part of the illness. What I’ve found is that while the computer is the blessing of blessings (thank goodness for being ill in the cyber age, if I had to be ill! ), at the same time the screen light is REALLY hard on the brain. I would look at the screen for hours and then get a “buzzed” head and not great sleep. I went from a fluorescent screen (the worst) to an LED (better) to a Pixel-Q screen (10 times better)
By far the best lesson was learning my brain needed time off from focussed thinking. So now I take frequent “mental” breaks….I often just gaze out my window and listen to or watch the birds. I never used to be interested in birds at all, but now that I’m bedbound, the green leaves and the lively, happy sounding birds with their acrobatic flights patterns give me deep pleasure. If I can, I meditate and let go of all my thoughts, and let myself be in the great feeling of peace and silence that restores my brain and makes all the difference to my mood. But that took years, before that anything that I could gaze at mindlessly would help, the ocean, a fire, listening to music, a hand craft, anything that lets my chatteringmind take a break, restores my sense that life is well worth living.
Not comparing my life with others, and as Cort said, when I feel its all a bit much, I find the “what in my life is a blessing?” game really does help.
Kauri, I think you’re going to enjoy a post from Johannes Starke on how to use the computer powerfully. You guys are on the same page on this.
I just saw something today that pretty much sums it all up for me. “When you feel like you’re drowning in life,
don’t worry — your Lifeguard walks on water.” I posted it on my FB page and my brother replied with, “It doesn’t matter how deep the water is when you learn how to walk on top of it.” My relationship with the Lord is my foundation and what sustains me.
Because of that, I’ve learned to look for the blessings along the way – my incredible loving and supportive family, wonderful lifelong friends who remind me to dance in the rain, friends from my ME/CFS support group who truly understand, long-distance friends who call just to “have a cup of coffee” with me, amazing physicians like Dr. Klimas (my hero!) and Dr. Rey, Cort and others who give so much of themselves to keep us informed and hopeful, and my two “perfect” grandsons who constantly teach me the joy of living in the moment and sharing unconditional love. I may have had ME/CFS for 27 years now, and recently was diagnosed with breast cancer, but I truly feel like one of the luckiest people in the world because I am so incredibly blessed with so much goodness in my life. God continues to send me lots of butterflies along the journey. They may have always been there but I’ve finally learned to expect them and recognize them when I see them.
Thanks, Cort for bringing this up as the weekend approaches. I look forward to getting my hair done, which used to make me sick, with neck pain. Found an old but new hairdresser who worked on my mother for years, so she often understands what I am talking about. (mom is now 86, usually grumpy). I can’t wait to plant some pansies and trim back my rose bush, which is incredibly hardy and outgrows my efforts every year. I think of roses as fragile and beautiful, when they are hardy, determined and thrive, no matter how hot or how I cut them back. Highly recommend the book ‘Backyard Parables’ by Margaret Roach. She also has a newsletter on-line with short and ‘to the point’ articles. Hopefully, I can make it to church which is soothing to my soul. I sit in my dads’ former seat, next to my mom. Hopefully, won’t fall down the steps of the balcony. Cort, there is a cannonball still stuck in one of the columns. Fredericksburg has it all for lovers of history!
I forgot to say the obvious… this blog and this community enrich my life. Thank you, Cort, and all of you who contribute so richly!
Hi Cort and everyone,
Thanks so much for your article and all the comments. People’s strategies to enjoy life certainly resonate with me.
It has been a good procrastination time for me too 😉 …away from my neuroscience essay that’s challenging at the moment. Despite the challenge of study, I love, love, love the fact I’m generally well enough to get back into study. I’m an ‘obnoxious’ adult education student (i.e. 35yo and actually interested and engaged in the subject matter so I ask questions) and am so grateful for the escape it gives me both when my mind is clearer or even when brain fogged as my Type A personality can rest, knowing I’m still “achieving” something.
Cort you mentioned “Dr. Friedberg, a psychologist with ME/CFS” which is so encouraging for me as I’m studying psychology after being a chartered accountant – insolvency practitioner for the last decade and a half before slow-onset MECFS knocked me out 3 years ago. I actually saw a psychologist who has it too just after I was diagnosed 2 years ago and she has helped me no end! I don’t need to see her now, I just know what she would say to me and it goes on helping when I need it!
I hope one day I can really give back to the cause and look forward to contributing wherever I can to psychological research too.
To all of you out there reading this and feeling crummy (Australian expression) rest assured it does get better. There is a way through the fog even if you can’t see it. Listen to yourself and be kind to yourself. This is your time to rest to be ready for your recovery whenever it may come!
Best wishes to all,
Lordy
Giving yourself the permission to rest is so important. I vividly remember Staci Stevens saying most people are still doing too much. It’s so to have this fatiguing condition and to not want to rest! I guess its because of all the things we all still want to do…which brings to mind the weird idea the depression would even be a little helpful if it wasn’t so harmful at the same time…because it would turn off, this drive, to keep doing things. I remember Cheney saying “If only I could put ME/CFS patients in coma….(lol)…
I like the idea to be kind to ourselves…I’m sure we beat ourselves unmercifully subconsciously for being ill.. I know I should practice giving myself a break and lightening up…
Cort, you’re so right. I do often have to pull myself up and check-in with my subconcious telling me it’s my fault I got this, and the docs are right, it is all in the mind, I’m just lazy etc. etc….
That’s why I treasure your research so much as it links my personal experience and limited understanding of the pathophysiology of the disease to the scientific community’s efforts in studying it.
Thanks again.
Cheers and yes be kind to yourself 😉
Lordy
Reading is a big escape for me. I used to love to educate myself through reading now my brain can’t hold on to the information or remember it. So I love to read simple books that takes my mind into a simple place. When I feel really good I love to garden, hike and be outside. I could sit and watch the snow fall at our house for hours its so relaxing. Aso when I feel good, i love to listen to music it takes me away to that special place. Not sure why when i’m really sick that noises are intolerable so I can’t listen to music. When I’m in a really bad place in my sickness I always tell myself to pull my big girl panties up, because right now somewhere in the world there are parents at a hospital bed begging god not to take their child from them. So yes things could be worse.
Great to hear how everyone is trying to be as positive as they can be under the circumstances……well done y’all!
My CFS life turned a corner when a counselor suggested I get involved in some voluntary work……and I got my life back when a local Rest Home accepted my offer!
Two years later and I’m still going and helping with various sedentary activities when I can. Both residents and staff are extremely supportive and appreciative……..and I love them all to bits!
I usually only go for an hour or so, about 3 afternoons a week, but I totally forget about my predicament as I focus on giving these lovely golden oldies a bit of quality time to their final years.
And on days when I’m not so good, they give me mini projects I can work on, from home.
And then of course there’s those days when I’m utterly useless to anyone and end up flat out in bed staring out the window!
But I’ve learnt to ride the roller-coaster and feel that at least in part, my life has purpose again.
One thing is sure my life has changed in so many ways since being diagnosed with CFS over ten years ago. So I`ve had to adjust and rebuild a new life. I`ve been lucky to have found new love, moved to a different country and now live in a beautiful village. I look out of the window and I can watch the changing scene, the birds and any other wildlife. Otherwise I take great pleasure and comfort from support groups on the internet. It has become my world. The care, friendship and support I have found makes up for the loss of other friends and family. I like to help others and I find that rewarding and I feel like I`ve a purpose. I can read a little and that is one pleasure that helps me through. I write poems – many about CFS/M.E. – and that is satisfying and gives me an outlet for my feelings and emotions. Each and every day I try to find something, no matter how small, to enjoy and to make my life worthwhile and meaningful.
Since I quit office work 3 years ago, I’m lucky enough to do what I want (when I want). The sheer luxury of waking up in the morning and knowing I can rest, relax, go outdoors, stay indoors – basically do whatever I like is like a breath of fresh air.
I have the freedom to be me, the person I always wanted to be.
Nothing is worse than pushing oneself through a stressful day, in a job you hate, working for & with, people with whom you have very little in common. and ‘crawling’ home to collapse in utter exhaustion and enduring almost constant pain. Nothing is worse than the unrelenting torture being in a state of constant stress, trying to live by other people’s rules and being at the beck & call of so many (when you can barely look after yourself).
I still have symptoms and pain, but having the time to deal with them in a calm, unhurried manner, means they don’t dominate my life as in the past.
Finding a creative, enjoyable hobby which I love, ensures the worst of my chronic health issues recede into the background. When you become your illness and waste every day wishing for a cure, you miss out on enjoying the simple pleasures and magic moments that can make your life worth living.
Forget the past – it will never come again. You will never regain what you had, but you can make a new life which is different, not the same as the past – just different. Rosalynde Lemarchand has the right idea in her comment.
Thanks Victoria…I remember you leaving your job a few years ago and how difficult that job was. I’m glad you’ve found more peace 🙂
Reading of course, feeding the birds instead of birdwatching, orchid growing instead of outdoor planting, and genealogy.
Rather than focusing on what I can’t do (the shock of losing so many abilities consumed the first year and a half or so of becoming ill), I have learned to focus on what I CAN do. I still matter, I can still help people. I can’t use much of my body, but I can still hear, and still have empathy. So I listen to music, and in the days when I have enough strength, I write to people online, connect to them, show empathy, find ways to give them hope. I was lucky enough to get involved in a website for abused women, and my responses alone directly were responsible for a few women escaping and entering shelters, and saving a few women’s lives who were about to be shot or strangled to death by significant others and were too afraid to leave. When I was healthy and working, I could not do that. I only have that chance because I became ill and could not do anything else. So I am grateful that despite the frustration of this illness, it made me more powerful in the world than I was before it. I also have new empathy for others who are ill, and the ideas I get now on what helps the chronically ill may lead to a new career from bed. I feel very blessed and emotionally fulfilled with the gifts this disease gave me, and that is great comfort for the part of me that feels physically unfulfilled from not being able to use my body. Before I became ill, I did not really value myself. This disease taught me to love myself, so even if I never get better I will always be grateful for that – I could not have learned it any other way. Believing I am worthy of love just like anybody else makes life so much better than before it.
My faith in God as well and the connection with my local church. Recognizing my limits and finding contentment in knowing my purpose for living is not about what I can physically do here on earth. That gives me freedom to do for others as I can. Quilting, visiting the elderly or sending notes of encouragement to shut-ins. I also have a couple retreats a year that I look forward to participating in. Taking pleasure in the simple things of life – nature’s beauty.
When I am feeling well enough to venture out I like to get up early as the sun is rising and everything is completely quiet and still. To experience the world as it begins to blossom and unfold. Breathing deeply the first mornings rays.
Just to have that sense of peace and gentleness before the sounds of the day begin. Connecting completely with nature. Gives one a great sense of freedom. To pretend that I am that bird soaring over the landscape…..no agenda not a care in the world. To be able to completely let go….and it’s ok.
After I like to walk to the neighborhood coffee house and order myself a tall americano (room for cream please) and a cranberry/orange scone. Find a nice comfortable place to sit, with a view, pop in my earplugs and read the paper or bring along a good book.
I also love walking in the rain without all the rain garb, get soaking wet and then once I get home strip off all my clothes and ease into a nice hot bath. Ahhhhhh!
I love taking short walks around the neighborhood greeting people as they are tending to their garden or walking their dogs. Brings a smile to my face. And the little ones, oh so inquisitive, I love sneaking in funny faces (when their parent is not looking) just to get a reaction! Hah!
I think it’s staying connected with the outside world….that keeps me sane. Also the escapes out of the city to some remote and beautiful place that gives one a much needed respite. And if I cannot travel there physically then I travel mentally…..it’s only one thought away….. ; )
I remember Ashok Gupta calling the first hours of the day the most important and he focused on starting the day off right with meditative type activities..
Why I Wake Early
Hello, sun in my face.
Hello, you who make the morning
and spread it over the fields
and into the faces of the tulips
and the nodding morning glories,
and into the window of, even, the
miserable and the crotchety~
best preacher that ever was,
dear star, that just happens
to be where you are in the universe
to keep us from ever-darkness,
to ease us with warm touching,
to hold us in the great hands of light~
good morning, good morning, good morning.
Watch, now, how I start the day
in happiness, in kindness.
~Mary Oliver
I have had ME for 10 years now…It has got worse so there is very little I can do. But like a lot have written here already I do enjoy reading and my 2 little dogs who are great to have around when you are down!
I watch a lot of tv…and love films so that is still a treat, and Id be really lost without the computer, as I have many online friends that have become very dear to me over the years.
I’m fairly limited now (muscular problems do not improve) but endorse your suggestion (advice really) to seek out those things that do bring pleasure. Music when hearing becomes less painful – Mozart and Bach seem to tune into the right brain waves, visual – plants, flowers or anything that brings happy making thoughts, walking if poss (doesn’t it raise endorphins), mental “exercise” like crosswords, intellectual “stretching” in one way or another to keep the little grey cells functioning. Things to avoid as much important – noise, crowds, people who talk too quickly and loudly etc. Cheerful people about are a great asset I find.
My dog! *cuddles her* 🙂
playing computer games like “Skyrim” or “Fallout New vegas”, as I can still “roam around” and have fun thanks to them in a way
making digital art when I’m well enough
http://www.silverblades-suitcase.com/sj/tradesman/tradesman_cloudsv2.jpg
I don’t have gardening anymore, it lands me in bed for a week.
I can’t read 75% of the time because my eyes won’t work or I have heads aches
I DO have a little Bichon named Lil’ Mama who gets me out of bed to walk her when I would other wise be too exhausted and/or in too much pain to get out of bed at all that day.
She snuggles in close to me when I have to spend most of my day in bed.
She lays her head on my chest when I am hurting too much and watches my face with her coal black eyes.
I had always thought that ,if I could only make it to-everything would be better.
If I could only make it to my diagnosis.
If I could only make it to my Social Security hearing.
If I could only make it to a treatment program with a CFS/ME expert.
But now I have made it to my diagnosis and to my Social Security hearing and all that has happened is any medical treatment I get is from the county but none of it addresses my CFS/Me because they don’t believe in it there and so don’t treat it. Also my Social Security “victory” means I get to try to live on $700 a month and get no Medicare because it takes 24 + months to kick in.
I can’t get seen by the local CFS/ME clinic until that kicks in because I have no other medical insurance.
To make things worse since I live in Broward County Florida the DEA has the private DR I used to go to scared to let me have prescriptions for the drugs I had been taking for 6+ years that helped with the muscle spasms and nerve pain I had while I was trying to sleep. ( and no they were NOT Roxicodone or other narcotics . According to the Internet one is even given to pregnant women it is so mild. )
So instead I have Lil’ Mama who sits and worries over me when I come home and collapse after spending all day waiting in line just to get one of my medications or be seen by one of the Drs
.Or when I can no longer be strong enough and weep out of frustration.
I don’t have Hope and I don’t have help- Except for one small fluffy angel who is sweeter than I have ever deserved. Who would have ever expected that such little shoulders could be so broad.
a year into my illness I bought a puppy to replace all that I lost. I named her after a feeling that would be nice to experience again – Chippa. We are good at a lot of the things you and Lil Mama are 🙂
I live in central FL. My dog was bitten by a poisonous spider last week so FL is not always the best place to live. I am indoors 99% of the time. My dog’s name is Dandelion (Dandy) and my cat’s name is Baby bear. Thanks to my pets I have someone to nurture because I am a nurturing person. I love to read my Bible in the morning while drinking my coffee. Jah gives me peace of mind. I like to play word games, card games and match 3 games on facebook. Reading about our condition at this site encourages me, so that I do not doubt that I am sick. The T.V. keeps me company in the evening. Being chronically ill is a luxury IF you have the resources to cope. My thoughts are with those of you who need more than you currently have. Take care fellow ME/CFS sufferers. (or overlapping conditions)
Meditation is what helps me to just BE with it all. Especially Adyashanti’s take on things, ” Allow to be what is” instead of wanting it to be different, resisting, clinging to things that are here anyway, just tio give space to what is and go from there really has helped. Also to really be in the moment, one moment at the time, rather than worrying, fretting about how to get through the day. Another thing that has helped a lot is Eckardt Tolle’s writing about the Painbody ( in “A New Earth”), to not fall into the pit of self pity, drama, anger etc.
Entering late into the conversation here.
I find both watching a good movie and listening to novels or short stories on tape, and, when I can, reading as well – all of these are absorbing activities that give me something to ponder beyond the experience as well as immense enjoyment of another reality. I am in pain much of the time, and when absorbed in a book or a movie I get to escape that pain.
Right now I am in the middle of three months away from home in the countryside – where it is very quiet, there is no TV, radio. I am using the computer less – and the tranquility of life, sitting in the sun, being still, observing the wind in the trees, the clouds, bird calls.
Another thing I do, consciously, often, is to acknowledge to myself how glad I am to be alive, to be witnessing life, and a part of this miraculous vibrant thing, life. When all is said and done, no matter how limited I may be in what I can do, I am here. And very lucky to be here.
What enriches my life with CFS?
My primary source of enrichment began with Bruce Campbell’s course at CFIDSselfhelp.org His example and teachings gave me the tools to seize back some control of my illness and life. Following these precepts for the last 7 years I’ve been lucky enough to improve from nearly housebound to being able to take creative techniques classes in my local college. These and the friendships I’ve made with textile artists at college and in my local Embroiderers’ Guild here in the UK have been very sustaining.
I’ve been lucky enough to retain and improve my positive and grateful attitudes to appreciate what I have:some health, little pain, loving husband, pets, pension, retaining some old friends etc.
I’m still pursuing information on how to improve and support the varied energy envelopes I have, and baby stepping towards a better and more fulfilling life. Learning some of how not to get in the way of my body’s attempts to heal has been empowering.
I suppose for me it is the old adage When life gives you lemons, make lemonaide….
My animals. Omg no matter how I’ll u are you will get out of bed to take care of them. I find cleaning and decluttering to be very helpful. I can’t work but I can clean houses and doing things so diligently takes my focus. I’m exhausted after a couple hours, but it’s a nice accomplished feeling. I also do a lot of childcare. Again only 2-3 hours at a time. It’s amazing how your brain shifts from your pain to keeping toddlers alive, safe and happy.
Am elderly, with second time of life threatening abuse, made my cfs/fibromyalgia too much for my aging body and mind to cope with. Never known what having family is like and lost all my friends. Have multiple other serious health issues as well. Was experienced dog handler but unfit to get an assistance dog plus am without anyone to help if either myself or dog unwell. Ultra sensitive to noise, light and passing open window in my home sets off hours of cold and flu symptoms. Was so ill, l had numerous tests for cancer, all negative. Had 8 fractures from falls re balance over the years, also permanent torn shoulder ligaments on either side. Forced myself to write this in stages as eyes are painful. Wish could find comfort or solace, to get me through this misery. Divorce plus losing my home of 53 years is soul destroying.
Hey, I’m a teenager with currently undiagnosed fatigue (have had it for 8 months now) and we haven’t yet found answers as to what is wrong with my body. I often feel hopeless as I’m trying to bite my way through school, but this article and its comments gave me a lot more peace – that even if we don’t find the cure, or if I get a chronic diagnosis, that my life can still be okay somehow. Thanks for that.