(Anne’s is a difficult story but it’s a good story in a way because it demonstrates the full force of this illness. Anne’s story is reminiscent of Jenn Brea, Jamison Hill and Mary Dimmock’s son’s stories. Each was a young adult with not just a good but perhaps an extraordinary life ahead of them, only to be struck down suddenly by this illness.
Anne had a remarkable life ahead of her – until ME/CFS hit
It’s also a cautionary tale from a formerly very active young woman who came down with a seemingly innocent cold and paid a severe price for taking her doctors advice to push harder and then was abandoned by the medical profession.
Thanks to Anne for allowing Health Rising to publish her moving story originally published as “My ME/CFS Story: Report From a Stay At Home Prison” from her book “Trött är fel ord” (Fatigue is the Wrong Word))
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I keep banging on the prison cell walls. Can anybody hear me?
I am trapped. How did this happen? How was my active life transformed into imprisonment in a two-room apartment? How did I end up in this state of confined isolation and perpetual torture? And will there be no end?
I have severe ME/CFS—a prison in two senses of the word. I am trapped inside a body which has ceased to function, completely knocked out by disease. I am also trapped in my apartment. All of my days, the days I used to spend outside, in nature, under the open sky, now play out within four walls. Outside my windows I see the trees change with the seasons: gleaming autumn gold, shimmering white with frost, turning green again. I see the people, all busy in different ways. Out there, life goes on. In here, all that goes on is a struggle to endure.
I can’t believe that this is happening; still less that almost no one seems to be reacting. I want to protest, shout out: Help! I need help: hope, a way out. I bang on the prison cell walls. Can anybody hear me?
When I fell ill, I was 28. I was at the beginning of everything good in life—full of energy and blissfully unaware of the existence of a disease called ME/CFS. I was working as a consultant in the field of environment and sustainability—a fortunate combination of career and dedication. Stockholm offered an abundance of good nights out: theatre, live music, icehockey games. Life was social, active, enjoyable.
My best days have always been the ones spent in nature, in the forest, in the mountains and among the islands of the archipelago. Underneath rustling leaves, on paths covered with fallen pine needles, on grey granite rocks with the winds from the Baltic coming in—that’s where I belong.
Camping in the pine forests of Sweden
I used to travel a lot—often to faraway places and deep into inaccessible terrain. I was lucky to have the opportunity to kayak through the greens of New Zealand, dive with manta rays off Costa Rica and hike in the barren mountain landscape of the Andes. A few months before I fell ill, I worked as a volunteer at a research station deep in the Amazon rainforest. I was thousands of kilometers from home and several days’ travel by river from the nearest village, as I sat in the verdant heart of the jungle.
If someone would have told me then that my life was about to diminish into a house arrest of 43 square meters, there is no way I could have believed them.
My “arrest” came in disguise, in the form of a regular respiratory infection, the type that usually comes along at the beginning of the Swedish autumn. The cold turned into sinusitis and bronchitis. My immune system took up the fight, but this time appeared unable to win the battle. All of a sudden it seemed all of my bodily systems had gone off-kilter, unable to return to normal.
This is the simple way to describe my illness: twelve years ago I contracted an infection, and then just never recovered. I am stuck in an ongoing massive immune cascade, unable to recuperate and regain a normal life.
Imprisoned by ME/CFS.
Imagine those days of your life when you are completely down and out with the flu. That is how I feel, constantly.
You know what it is like when your body is focusing all its efforts on fighting a nasty infection. You are utterly exhausted. You lie in bed in a feverish haze, everything hurts, your head is spinning, your joints and muscles are aching. It is impossible to summon up a single ounce of energy. Gravity seems to have concentrated all its force on your body alone, and you cannot move even an inch.
Sailing the fjords of Scandanavia
You have no energy to read—perhaps not even to listen to the radio, as your brain cannot cope with any input. No position is comfortable, you freeze, you sweat, your skin is tender to the touch. Your normally cozy bed is no longer the slightest bit cozy. You feel thirsty and would need to get a glass of water, but this appears an effort of insurmountable proportions—simply impossible. Instead, you focus on breathing through your sore throat, breathing in and out, until your body has conquered the infection, come through the ordeal and is able to signal to your immune system to calm down.
Then—finally—strength comes flooding back, the “brain fog” clears, you can once again bend your joints and move your body. Everything seems to snap back into focus, your life spreads out before you again. What was recently impossible is now laughably easy. You get up, take a shower, and life continues. Perhaps you might think to yourself that you hope it will be a long time before the next bout of flu which will have you floored. But you quickly forget the feverish battle of the past few days—after all, it was just a brief moment of a life being lived.
For me, that turning point never appears. I cannot get up out of bed and get on with my life. Instead, I continue living in a perpetual flu-like state. I exist in an all-encompassing, complete exhaustion, often in a sort of semi-coma. And—unlike a person with a normal bout of infection—I cannot count the days until it is over.
A cardinal feature of ME/CFS is that activity leads to deterioration. Even the slightest exertion causes my body to “crash.” Taking a shower uses up all of my energy, and forces me to spend several hours in bed trying to recover. And if I have to take a taxi to an absolutely necessary medical appointment—the only leave from my prison—this puts me in bed with a temperature for a week. I am incapable of managing day-to-day life. Every little activity is a marathon challenge, and I am running this marathon over and over again, every hour of every day—without ever reaching the finishing line, or even a place to rest.
With ME/CFS, the body seems to function in a sort of reverse pattern. Exercise, instead of building it up, breaks it down. With training, my muscles do not become stronger, but rather they become weaker, stiffer and even shakier. If I am up and about more, my dizziness gets worse, not better. And these are not one-off reactions that improve if I persevere through them. Though sounding backwards compared to normal, perhaps this is logical if we think of ME/CFS as an ongoing immunological reaction, as biomedical researchers view it today.
At the beginning of my illness, I made the dire mistake of listening to uninformed health care staff, who advised me to “push my body,” contrary to the signals it was giving me. The theory was that if I started to exercise, my immune system would improve and my health would return with time, even though it might be a struggle to begin with. Of course, all I wanted was to be well again, so I did as they said.
Anne followed her doctors advice to exercise – which turned out to be exactly the wrong thing to do.
I forced myself to go for walks. I went back to work, even though deep down I knew I was far too ill. Every day, coming home, I would collapse in the hallway, crying from sheer exhaustion and pain. Yet I struggled on. And so my body just got worse and worse, in a descending spiral that finally landed me in my round-the-clockhouse arrest.
How I regret it all! How I wish I had been able to meet a knowledgeable ME/CFS physician at the start of my illness, someone who would have been ableto give me correct advice about rest and treatment. Perhaps then I would have been a free person today.
Instead, here I am in this improbable ME/CFS existence. My dreams—of a family, a happy social life, a productive career, future travels—have all been crushed. I have been severed from my beloved nature, the forest, sea and mountains. My family and friends are becoming ever more distant, as I am unable to see them or even speak to them on the phone. Someone said: “ME/CFS takes your life away, but it doesn’t have the courtesy to kill you.” So true. Many times I find it hard to call this existence a life.
I want you to know that I am not one to give up easily. I have done everything imaginable to get better and regain function. I have hauled my body to a huge number of doctors, tried endless successions of more or less alternative treatments, followed all kinds of instructions, figured out my own paths. I have struggled, battled, rested, tried something new, over and over. I have tried living in acceptance and just letting things be, tried fighting for change, inventing hope time and again. Everything, I have done everything. I remain severely ill.
I have been surprised and disappointed to receive almost no help from the health care services. The doctors are uninformed and, not infrequently, even dismissive regarding ME/CFS. Many are not even aware of the diagnosis, and very few appear interested in tackling anything new.
This fascinates me. It seems that the health care system has a principle of labeling everything that it is unfamiliar with as “non-existent” or even “psychosomatic.” I get the feeling that if it was not in the doctor’s text book when she or he took their medical exams in 1978, then it does not exist.
How does this fit in with the constant progress of science? Of course, there must be a lot of things that remain uncharted. ME/CFS demonstrably exists, and researchers have found abundant evidence of immunological and neurological abnormalities. How can professionals still dismiss the illness? Does science—medicine included—not exist precisely to find answers to the new questions which will always keep arising?
The problem also lies in the structure of the health care system. For each disease, specialists are required. There is clearly no chance of my general practitioner familiarizing herself with ME/CFS research when she only meets the occasional patient. Specialist clinics doing biomedical research are fundamental needs. At present, ME/CFS patients are not referred to specialized ME/CFS care; instead, we are sent out of the system.
Almost no research is taking place in Sweden and while internationally there are some very promising biomedical research projects, time and again the initial pilot studies are not followed by the necessary larger studies, due to lack of funding.
Anne today at a clinic
And that is, in fact, the very worst part of my situation: the insight that it need not have been like this. While it is almost unendurable to exist in my body with all the pain and suffering; while it is difficult to bear the contrasts between my life and the lives of others; while it is rough to experience the loss of both elements of the term “quality of life”— still hardest of all is having to live with the fact that it could all have been different.
If ME/CFS specialist care had been available, and if proper funds had been directed towards biomedical research, then my prospects would have been immeasurably brighter. When one gets a chronic disease, one must be given the chance to think: “At least I know we are moving towards a solution. There are lots of people out there are doing research into my disease, developing treatments, getting more and more proficient. There is hope!”
ME/CFS patients are not allowed that hope. Instead, our disease is met by a lack of understanding, sometimes even skepticism and aversion to new knowledge and progressive science. I wonder why it would have to be this way.
Yes, how did it happen? Why am I lying here in the middle of the welfare state of Sweden, imprisoned and in great pain and constant suffering, without any forces working towards finding me a way out? It seems that my sentence—even though I am not guilty—will be prison for the foreseeable future, possibly for life, with continuing daily torture.
I am trapped in here. The people with my fate in their hands—politicians, medical professionals, distributors of research funding—are free out there. I keep banging on the prison cell walls. Can anybody hear me?
- Anne advocates for ME/CFS research from her apartment. Find her Health Rising blogs here
Update
In a great loss to the ME/CFS community, Anne Ortegren, in declining health and seeing no viable future in front of her, took her life in 2018 – adding her name to a long list of people who have done likewise. One wonders when the medical community will say enough to the loss of life and health and give this disease and the people who have it their due.
Yet despite all this you still write well! The issue is ME requires rest to get better whereas Fatigue due to mental problems requires exercise. If only everyone knew that rest early on enables people to get better rather than exercise people’s lives would be better. I used to swim everyday thinking it would make me better. LOL. I hope in time things get easier for you.
Anne, I am sure an article this long must have taken weeks to write. I find even a facebook conversation or an email to my children’s school totally draining. Thank you for sharing, and knowing exactly how I feel
Oh my goodness Anne. This is heartbreaking.
I too have ME/CFS (or Fibromyalgia/CFS which is what they call it here in Canada). I have not been stricken as harshly as you have, and I did not get my first signs of illness until I was in my early 30’s, progressing slowly but steadily until now, when I am in my mid-50s. I hear you on so many levels. I too have had the struggles with the doctors, the endless visits to many alternative therapies, the constant drain on finances.
I wish I had something to offer you – companionship, a walk in the autumn leaves, a drive in the mountains.
All I can offer is my heartfelt empathy and prayers for a better life for you.
Hugs and Blessings
Dawn
My grand daughter is about to be diagnosed with ME/CFS after two years of traveling from doctor to doctor and given some ridiculous things to do to be better…………Tai Chi and make more friends!!!!!!! She has found that if she does anything that requires a bit of work, like vacuuming or planting bulbs, it starts a flare-up and she is sick for a week. Right now she is able to keep working because without the insurance her employer provides she would be in big trouble. She is 24 today and has been sick for several years and it is getting progressively worse. But the medical profession is finally beginning to take notice and hopefully a control will at least be found in the next few years.
I feel for you…………I know what you are saying. I watch it. And it is scary.
Good luck.
Diane
Good luck with your grand daughter Diane! It’s great you’re looking out for her 🙂
Your story is familiar, albeit your former lifestyle a much grander one than mine. I was embarking on a new life, new home and new career when I became ill, 17 years ago. One major difference was, though, I was quickly diagnosed by a brilliant primary care doctor who advised 6 months of rest. I complied. When I didn’t improve, I sought out one of our (USA) best specialists, Dr. Lapp. Despite getting early intervention, I remain mostly housebound, frequently stuck in bed. Effective treatment of more than symptoms simply hasn’t been available. You’ll never know if you’d have improved or even recovered had you known to rest early on, but believe me, it may not have changed where you ended up. Still, you deserved the chance and were mistreated terribly. I think all of us would be better off now if ME/CFS had been taken seriously by the medical profession long ago and had research been properly funded. Thanks for sharing your story.
I AGREE, BUT WITHOUT A CAUSE, WE HAVE NO CURE & UNFORTUNATELY THOSE WHO HAVE TRIED MANY THINGS R JUST AS SICK AS THOSE NOT ABLE TO. U LIVED MORE LIFE IN THOSE EARLY YEARS THAN I HAVE IN MY 68 YRS. I DIAGNOSED MYSELF, AS I WAS FAMILIAR WITH CFS, BUT LUCKILY A SPEC DID DIAGNOSE IT OR I WOULDN’T HAVE QUALIFIED FOR FINANCIAL HELP. I RELATE TO YOUR FEELING OF BEING A PRISONER–IN MY BEDROOM! I ALSO LIKED YOUR DEFINITION; THAT ME/CFS TAKES AWAY YOUR LIFE BUT YOU DON’T DIE! TRULY A VERY STRANGE ILLNESS. HOPING U SEE A CURE IN YOUR LIFETIME–TAKE A BOATRIDE FOR ME & COME VISIT OUR BEAUTIFUL JASPER & BANFF MTNS!
Dear Anne,
I can relate to your story though my path is slightly different from yours but still…I have fibromyalgia and CFS. I am 44 and it started over 4 years ago after a 7 day trek in the sea (I used to be a long distance swimmer). Just like everyone hit by that curse, I looked for answers, stressed my body and soul travelling to the north of France, then to the south, looking for specialists that could help me.
I should have started saying I am French. I am not bed bound but can no longer travel, swim, walk more than ten minutes, pain is excruciating, sleep is a constant issue. I cannot do the housework in my apartment and regret those moments when I could and called all this chores!
My new doctor put me on the Gupta programme, PLEASE, everyone, take a look at it on the web, I started, felt soooo much better after only 3 weeks, then had a dip in which I still am but I am pretty sure that this programme is the missing part of the puzzle.
If you don’t find it relevant or have tried it and didn’t find it useful for you, please, do not leave any comment, this is the last thing we need here. We need strength, belief, self esteem, love and above all compassion.
Hope this message helps a lot of people, everyone deserves to get their health back.
A long distance swimmer! How long have you been doing Gupta? I feel our systems are so sensitive that almost anything can disturb them which is why I think things like Gupta can be helpful for some people.
Have you been thoroughly evaluated by a good tropical disease specialist? You may have picked up something in the Amazon. This may not be it, but I wouldn’t rule it out.
I was thinking the same thing. Ticks and mosquitoes transmit awful diseases in the USA. The bugs in the Amazon must transmit quite a few diseases too. I thought that about the lady making the “Canary in the Coal Mine” movie as well. She got sick after visiting Africa.
Thanks Anne, I’m a fellow inmate of 33 years now and I thank you for expressing it all so well.
Hi Ann,
I wish only the best for you… Are you trying any type of treatment? Francesca
Anne,
Despite illness, but you articulate your situation beautifully. I feel total compassion for your story as it is remarkably similar to my own; except for the parts about international travel. I traveled throughout the western US, hiking and camping before getting sick and like you, I intended to keep going and going. Like you, I was staggered and in total disbelief that a disease called Chronic Fatigue Syndrome, (YES! Fatigue IS the wrong word) would so completely steal my life away from me. It is exactly like a flu that does not go away. There is virtually no support in knowing that someone else is suffering like you, except that you know that someone else is harboring the same hopes and pulling for you from miles, and an ocean away. Thank you for sharing your story.
I could relate to your thoughts so much! I am the same age as you & got sick when I was 28 too. I was also a huge outdoors person & was the happiest when hiking & exploring. It is so hard to have given up so much. I also feel trapped @ home. I think the isolation is one of the hardest things to cope with. I now understand why solitary confinement is used as a means of punishment/torture. You are not alone in these feelings.
I was a big hiker and wilderness lover too Anonymous. That part of the Anne’s story really resonated with me.
Dear Anne,
I hear you. Your story moves me every time I read it. I want to believe that there’s hope for us ME-patients in Sweden. I do hope that you will be able to travel the world again. Someday. Thank you.
Kram
We all have been frustrated and angry at our doctors for not wanting to “get involved”. I think they know there isn’t much they can offer you, and we CFS patients take up so much time.
The real culprits are the Congress and Big Pharma that deny the federal funding for medical research.
Fatigue is by far the most common complaint that doctors hear. It’s my opinion that eliminating that symptom wouldn’t be wise from a monetary aspect. Chronic illness is what the medical profession thrives on, unfortunately.
Some, make other excuses for the dearth of funding but it really doesn’t make sense.
I sympathize with you, having been sick for forty years, but unlike you, I have mostly been minimally functional, for short periods. With help, enough to get by, in a country that does not have the universal health care that you have.
At 72, it is unlikely I will ever see the day this disease in conquered but at your age, I think you may. I certainly hope so. RP
First, thanks to Anne for telling her story………..it must have been difficult in many ways, so thank you. And know that there are others out here like you with the same problems, fears and yes, hopes. Secondly, to Rich: my husband is the one who has suffered from this for 20 years and it is so hard for him. He is your age and tries so hard to do things but it is very difficult and painful for him. I wish there was some way you two could communicate with each other. Most people just cannot understand why he is not able to participate in their activities. It is a lonely condition…….we must all keep hope alive that someone, somewhere will come up with a program that will help. Bless you all.
Anne, thank you for articulating so well the horror of severe ME. Like you, I enjoyed an active lifestyle including a 20 month round the world trip in my twenties before coming done with ME age 27. I am now nearly 43 and have been severely affected since my mid thirties ranging from top end of severe to very severe. I have become totally bedridden again for the last 15 months. Life does feel like a prison and it is painful to know that the medical authorities have done so little to research this illness and perhaps find effective medical treatments. I hope the next generation fares better than us
I am sorry you were given such bad advice initially and now will never know whether if you hadn’t been you may have recovered or at least not become so severe. I can only share that I didn’t push too much once I became ill at age 27 but it didn’t sadly prevent me from deteriorating into severe ME after a few years, but I can totally understand the wish to have least had the opportunity of the right advice. Once again thank you for sharing your story and giving a voice to this woefully misunderstood and very debilitating illness
SADLY, MOST DOCTORS WOULD STILL TELL U TO EXERCISE. WHEN I NEEDED A NEW GP, I’M SURE IT WENT RIGHT OVER HIS HEAD THAT I HAD CFS. WHEN I WENT TO HIM ONE DAY, ALMOST OUT OF MY MIND WITH THE FUTILITY OF IT ALL, WITH THE WAY MY NEW HUSBAND & HIS FAMILY REFUSED TO RECOGNIZE MY ILLNESS, WITH ALL OF THE OBSTACLES, HE TOLD ME I NEEDED TO GO SEE MY PSYCHIATRIST, EAT BETTER & EXERCISE MORE! I WALKED OUT FUMING & NEVER WENT BACK! HE’S RECOGNIZED AS ONE OF THE BEST DOCS IN OUR TOWN, BUT HE KNEW NOTHING ABOUT MY ILLNESS.
Thank you so much Anne for sharing your heartbreaking yet courageous journey. Yours is yet another one of those horrendous cases that need to be heard by the general public all over the world so that everyone is aware of what is going on.
I am a middle of the spectrum case of ME/CFS, trapped some days or weeks by illness but fortunately capable of having semi-normal days in which I can function. I was recently well enough to be able to attend the 4 day International MECFS conference in San Francisco and I want to tell you DO NOT GIVE UP HOPE. The are some absolutely fantastic doctors, scientists, and other researchers working fast and furiously and extremely compassionately to help us. With the pace of medical and science technology rapidly evolving these days, what used to take many years can now be done much faster and things that could only be dreamed of a few years ago can now be done.
There isn’t anything I can do to help you feel better physically but mentally and emotionally I can extend to you the knowledge that our illness is very real and now has a lot of research behind it now proving our symptoms are real. One day soon, the entire world, including all those smug, ignorant physicians or well meaning but non-educated physicians will learn the truth and you and I and all the other ME/CFS sufferers will get help. Or at the very least, recognition and respect, something that is long overdue.
Claire from Ottawa Canada
GOOD TO HEAR, CLAIRE! BONNIE FROM ALBERTA, CANADA.
Your story brought me to tears, but it doesn’t take much to do that since I came down with cfs a year ago LOL. I caught the coxackie virus 2 days after surgery and 2 months after delivering my 3rd child at 39 which triggered it . I sought treatment locally from the beginning, they had no clue what was wrong with me. 2 wks of research led me to post viral syndrome / cfs. I only have an MBA not any medical education. I then went to mayo, which is supposed to be one of the best facilities in the US. They diagnosed me with Pots, OI, post viral and prescribed me to go to cardiac rehab, which is controlled exercise. I made the appt to go but I kept crashing every 2 wks and couldn’t walk to the bathroom let alone try and exercise. So I cancelled. I later read dr. Myhills website who said don’t increase activity until you feel Ok doing nothing. I chose to follow her advise and have slowly built up from 1600 steps to about 3300 a day since Sept. Will I continue to make progress, I hope, but don’t know. I plan to go to a Lyme specialist in may. I now believe u have to be your own doctor and advocate. I don’t have a lot of confidence in the medical system. Best of luck to you. Every day is a physical and mental struggle. Right now we r on vacation and I’m struggling how the drive about killed me, I have to stay at the hotel while my hudband goes out with our friends as its too much for me, babysitters have to take care of my kids on a daily basis. It’s all just hard but we have to have hope for a better future. You r in my prayers.
Thank you Anne, our stories are so similar… I have Lyme/ME/CFS/FM. In 87 was bitten by a tick, had the classic bulls eye rash, which was misdiagnosed as ringworm. Felt like I had the worst flu ever, followed by another new symptom every few days; sore throat, feverish, insomnia, allergies, female problems, on & on. From a type A, super healthy, active career woman, to the ICU after seven years of being told Lyme didn’t exist. I lost everything, including the ability to have children. I learned last year that Lyme disease turns on a gene for CFS if you are genetically predisposed. I have been turned away & treated very harshly by doctors since 1987 in search for answers, if they cannot “fix it”, they dismiss you… So disheartening.
So grateful to find this blog.
Di – coming up we’re going to do a blog series on a woman who had a similar journey – from super healthy to basically a physical basket case – and how she dealt with it. I hope it will help.
Anne: Great article, and I hear you loud and clear!! I had CFIDS for many years http://www.fms-help.com/fatigue.htm and it became TOTALLY DEBILITATING when I worked part-time in a water-damaged building and was exposed to toxic mold and bacterial spores http://www.fms-help.com/mold.htm. I developed a deathly respiratory virus that lasted for years. I have slowly improved to the point of partial functionality – not as a “normal” person – or even as I was prior to the onset of CFIDS in 1987. But I have come to accept my “new normal” and am grateful for small things like being able to take a shower, ride in a car, go shopping for a few hours, work part-time, or go to church. These were formerly monumental or even impossible feats. I can now do these things easily on a good day, but can never tell how functional I will be on a given day, so I can’t make commitments beyond about 12 hours or so in advance. This has ruined my ability to make a living, and people don’t understand why I can’t commit to being somewhere on a given day (family gatherings, meetings, social activities, weddings, etc.) Travel has become neurologically impossible, because I can’t process too much incoming stimuli without “brain-crashing.” As painful as the social misunderstanding is, I am just thankful to be able to get out of bed and have a “semi-life” again. Those who don’t have CFS/ME can never understand what it’s like – the debilitation, the losses on all levels of life. But as a former Type A, driven overachiever, I couldn’t have understood unless this had happened to me personally. This illness has made me a much more compassionate person. I have been working for FMS/CFS/ME awareness since 1996 at http://www.fms-help.com, because the world needs to know that we are NOT lazy, hypochondriacs, or malingerers!!! We are SICK with an invisible illness that presently has no cure. I recently wrote a story called THE RADIO http://ccmusa.org/read/read.aspx?id=chg20140105 about some unexpected encouragement that came my way during my worst CFIDS years. My heart goes out to all sufferers! I hope that we will be taken seriously by the medical world and that a cure can be found.
I was moved to tears too, Anne, and I agree that you write beautifully. It must have taken a LOT of effort and I hope you’re proud of that because you should be. I won’t write much since its a bad day for me but I can tell that my worst days would probably be pretty good for you. Don’t lose hope! As someone else said, you’re young enough for many good things to come along. Many of us DO improve, with or without much treatment, so there are at least SOME reasonably good days. Sending wishes for a MUCH brighter future.
My dearest friend Anne,
You may have lost a lot of strength, but you certainly still retain your capacity to profoundly touch hearts and minds with your sharp analyses!
I remember those days, when you so easily otperformed all of us, be it in the field of academic studies, achievements for the civil society (in particular in the field of environmental protection and awareness raising), or emotional intelligence for the benefit of your co-citizens.
Somehow I know, that you remain a true Champion, and I sometimes believe that you were selected to fight this particular fight, because nobody else is as fit for it as you are! The day you are saluted all over the world for having helped crack the ME riddle, please remember me!
Love
johanna
What a compelling narrative… It goes straight to the heart…
And parts of it could be quotes from the best of ME/CFS primers for medical practitioners:
“With ME/CFS, the body seems to function in a sort of reverse pattern. Exercise, instead of building it up, breaks it down”. – It can’t be put in a clearer way…
That sentence rang out so loudly to me too… Time after time I’ve been told to excercise more by so many (so called??) proffesionals.
They say, “Why not try swimming?”…, and I immediately think, how the hell do I get changed to swim!?
Or they say, “What about jogging?”…. And it’s like Jogging? JOGGING!?? …. For christ’s sake I can’t even drive fast!!
I’m a 41 year old man who’s Fybromyalgia/ CFS started about 2 years ago after being diagnosed with Scheurrmans Disease. Which is spinal deformity that causes tremendous pain in my thoracic spine & ribs.
But what pisses me off is that no one ever talks about my Fibro…. They only mention my bad back….. Yes, that’s right…. “Bad Back”. They can’t even get that part right. So each time I get a medical certificate, the doctor writes “bad back” as my problem. And I tell you…. All I want to do is jump on his/her head, whilst wearing concrete filled boots.
If only it was a “bad back” eh??
If only I didn’t get pain in my back, my arms, my legs, my neck, my feet, my hands…. And even my goddamn fingers!! Not to mention the tiredness that is so extreme, that I can fall asleep whist eating my lunch. (That is when I do eat, which is very rare!)
So yes, the so called specialists and doctors…. And even my own family can make things worse by the stress they cause. Stress that increases my pain even more!
My current meds are Morphine patches, Gabapentin, Naproxen, Paracetamol, Duloxetine & the occasional sip of liquid morphine.
But you know what…. I may as well stick them all up my ass sometimes for the good that they do!! As I’m still in pain 24/7, even after taking all of them.
So take care & good luck to all of you…. From one sufferer to many others xx
It is such a struggle, not only the illness but the inability to live the life you want. One thing that has recently given me a lot more understanding and much-needed hope is a wonderful book recommended to me by my NP: From Fatigued to Fantastic by Jacob Teitelbaum M.D. . It is a book explaining CFS and Fibromyalgia in its complexity and details many treatment options. This book is so helpful, I wish I had found it sooner–I didn’t know what was going on until just recently. I missed out on my teenage years and cannot function in the world yet as a young adult. I agree this illness is similar to being imprisoned. But I do think there is always hope. Reading about all the studies and progress in figuring out this illness is a comfort. One major thing being looked into is the role of the hypothalamus in CFS, not working correctly and so causing dysfunction of the adrenal, thyroid, and other glands along with the autonomic nervous system. I just wish it was easier to deal with this complicated illness!
I live in the UK I’m a sufferer too I have cfs (M.E) and fibromyalgia. Over here we’ve had alot of people recovering with the Perrin technique and it’s branching out all over the world. I’ve met one girl who was in a wheelchair who now walks and lives independently and free from disease.. have a look?
Ann Thank You for such a great written article. AWESOMEJOB!!
Made me cry as every bit of it is the truth except I do know people who rested right away and never got well. The life we live, no one should have to endure. I am disgusted with the government and medical field too. If someone RICH or with a big enough name would get this ( I would not wish this on anyone~ prison sentence) but if their name was BIG in the world ~ The World would stand up for all of us and do something to help us. God Bless and so very sorry you suffer. I have been sick since 1989, cold/virus etc and since then have never been myself. I do have a few days, moments, hours, sometimes weeks where I can do a few things but crash and burn over and over. Every single thing you wrote about I can relate.
Just makes me sad but wanted to thank you and tell you to hold on. We need to feel god to fight for our cause but we can’t. Pretty soon the years al float together. I still have hopes and dreams but turning 60 now and each year a new things happens. Heart attack, bowel removed, sleep apnea, RA, allergies etc I am starting to lose hope more and more.
Sorry my mind is not making much sence today. Thank you and May someone out there find a way to help us. I am blessed in many ways. I have family who love me and believe me but I want to run, laugh and live again.
warm hugs and keep writing when you can.
Anne, I hear you and you are not alone. What a fantastic description of our common ordeal!
This may be small comfort but I and no doubt others had wiser doctors who told us to go home and rest when our infections didn’t resolve in a normal time. Nevertheless, I came down with severe ME and recognize all of your symptoms only too well. I used to call the weakness and my near paralysis Raggedy Ann. I don’t know if you will recognize the reference but it is to a rag doll with floppy limbs.
I encourage you to let go of the “if only” story because you can’t be 100% sure that is true and it adds to your suffering. Check out Byron Katie’s method for letting go of thoughts if you’re able. I tortured myself for so many years in a similar way and I made myself worse.
I will have been sick for 29 years this summer but I am much better than I once was. I’m able to be with people and to go out to do things and sit in nature. I’m no longer completely bedridden or housebound because by fluke I found something that gave me an improvement at the 27 year mark. It CAN happen and no one was more shocked than I was, believe me!
While you may be unable to do much with your family and friends, perhaps you can enlist them to advocate for ME/CFS and you.
Even if there is nothing you can do to improve your quality of life, forgiving yourself for getting ill is within your power. And cultivating gratitude for the adventures of a lifetime experienced before losing your health might be helpful too. These glass half full (or a drop in our cases) strategies pissed me off no end. And anyone telling me to look on the bright side deserved beheading. But in the end, when I stopped struggling and started living in acceptance more of the time, I realized it was the only path back to joy and happiness.
Hi Esther… I hear what You are saying.
In my process I understood that the “what if’s” didn’ t really help me.
The non-stop complaining was utterly useless to me …. sometimes I would almost push it to feeling pity about myself. I know it sounds weird but a lot of us tend to do that unconsciously .
I has helped me understand that within this process I have several variables, A,B,C,D,X …. and all of them add to the process in one way or another.
HEALTH = A+B+C+D+…+X
let’s imagine X is all inputs coming from your mind. If you give negative inputs the general equation and result will be worse off like it or not… unless you use this negativity to observe yourself…. then you would have a chance to move on and understand how your mind is tricking you.
Obviously if you “REALLY” let go of bad vibrations and turn it into good Vibrations, at least this “X” variable will be “fixed” allowing more room for the other variables to start moving in the right direction.
I now understand this mechanism and let me tell you….. It helps It really does!
At least it gives you the possibility to start moving on with the rest of the equation and understanding that sometimes unconsciously i was adding to the “problem” by making my body have certain down pulling emotions that would only create more blockages in the energy of my body making it more difficult for it to flow.
The process of understanding this requires responsibility …. self responsibility… and usually requires time to reflect on things you might have been stuck to all your life…. things that We never wanted to confront in all our lives…
Pointing inwards has helped me much more than pointing outwards
What can I say?
I’m in London UK , If anybody needs me… let me know… I’ll be happy to pass on to you what I learned 🙂
any other person even if outside UK if you need to talk let me know
big huggies to everyone 🙂
I want to repay the UNIVERSE for all good things that I have in my
life 🙂
Thank you for your story, Anne. It’s good to hear that you have retained a fighting spirit in your mind. Keep on writing! It belays the sense of isolation, allows you to process your experience, and does all of us so much good! You have a beautiful writing voice.
You probably have done this already, but in case not, I suggest looking into herbal treatments. Harrod Buhner is a U.S. herbalist whose claim to fame is curing himself of Hepatitis C with herbs. Next, he focused on curing intractable Lyme disease with herbs. He has a number of books out, full of sound scientific research on how many herbs work.
I agree with the above mention of looking into tropical diseases. Even though your illness seemed to have started with a flu & bronchitis, it is often the case that a number of infections, some quiescent, have teemed up to dismantle the immune system.
I have been sick since my mid-30s. I was on a slow decline until getting Rocky Mountain Spotted Fever twice in 2006 & 2009, which finally put me over the edge. In retrospect, based on symptoms, I think Lyme disease might have started my illness years earlier. Previously acupuncture & chinese herbs had kept me going forward (tho still declining), but now I’ve had to stop working & search out specialist in chronic illness — meaning someone who is willing to prescribe lengthy treatments of antibiotics & anti-vitals. After doing this for 2-1/2 yrs I am far from well, but off the couch & not longer feel like I could collapse when standing.
At my age of 59 my immune system might be too damaged to fully repair, But I have high hopes for you!!! Good research is happening, and I expect new treatments on the horizon. Even if you don’t have the “experts” in Sweden, continue a search for a doctor who is willing to let you bring in research & treatment protocols to him/her. It can take effort to find this doc, but many people are getting treatment in this way.
Back to the herbs: Buhner’s protocols list herbs that treat a WIDE variety of infections. Not all infections will show up on testing anyway, so trial & error can be a worthwhile effort. Try one herb at a time to find those that work, until you gradually build up a combination that helps. Be aware that you might “herx,” that is, feel worse before better. Feeling worse on a treatment might be a good sign of it’s working, and a nod to going slower with it, rather than stopping. Also note that Buhner’s doses are higher than many herbalists suggest, which in some cases is why, I think, his protocols work. Learn to listen to your body & and you will be able to treat yourself.
Since you are bedridden, you might look into being treated for POTS, alongside trying herbs on your own (again, if you haven’t already . . .).
For me, I found antibiotics useful for a year, then when they seemed to stop doing much I switched to herbs (high doses of 10-12 herbs). Now I am on to a combo of both, plus anti-vitals. And I am improving, slowly. I wish the same for you! Don’t give up!
Peace & blessings, Terry
Sinusitis is a common feature in ME sufferers. I would encourage anyone bed bound if possible to raise the head of the bed with wooden blocks so they sleep on a slope. Night time reflux is very rarely diagnosed but makes sinusitis worse.
Xylitol,a wood sugar, is a natural antibiotc and 100% xylitol chewing gum helped my sinuses a lot. It has clinical trials to support its use in ear infections, it works on other infections too.
Bed bound people will be vitamin D deficient, supplements are essential.
I walked 2 miles yesterday, I was almost bedbound 4 years ago. I dealt with the sinus infections, supplemented vitamin D, used probiotics and N-acetyl-cysteine, eat gluten free and avoid alcohol. Hope it helps someone else.
Of course all this helps! and being compassionate with oneself 🙂
hey, i rested at the beginning as i slept, slept, slept as i couldn’t awaken for about 3 yrs. and what do i get? NOT better at all, simply so ill i cannot believe i still EXIST being so miserable EVERYDAY!
sinusitis too and Throat-Burn, comes up right into my throat as i told my dr. but he said NOTHING! yet i take those pills like prilosec and they don’t do anything either! also tests said to STOP taking Vit. D!
WHAT/WHERE DO WE TURN TO???
Hi Dee,
So sorry to hear you suffer to such a degree. My daughter contacted CFS with a severe virus on her 13th birthday, after three weeks of sleeping she decided to attend school due to boredom….the local council happened to be attending the school that fateful day and gave her the first HPV VACCINE which made her regress somewhat. She is now 18 and functions only at a minimal level to attend University. No social life. Thankfully so far there is no further progression.
However, the reason I reply is to suggest you perhaps have a look at your level of acidity as I have read in the past that bicarb of soda can aid acidic reflux. So much better than aluminium containing acid blockers.You can get alkalising powders to mix with your daily water intake. Do some research if you are up to it.
Like one of the previous writers my daughter is gluten free, fresh food, no packaged food, low sugar and low carb. Don’t know if that helps anyone.
Good luck to you all out there, and just to let you know there is a new research facility dedicated to CFS/ME on the Gold Coast in Australia and a dedicated clinic in Melbourne Australia. There is lots of recognition of the disease here but still a lot of practitioners who take your money and get you nowhere!
Chin up everyone
Linda
dee,
The articles in the newspapers and magazines about stopping vitamin D were based on a study that was terribly flawed. But telling people to stop vitamin D is going to cause all kinds of problems that will need drugs to “help” people feel better. Ergo, the pharmaceutical industry makes a huge amount of money. Since the FDA, Pharmaceutical Industry, and Health Reporters all are interwoven into a corporate monopoly of control of information, we have to be our own advocates and get our information from unbiased studies. If you aren’t able to do this,, hopefully you have a family member or friend who can help.
You absolutely need at least 2000 mg of vitamin D every day. If you’re deficient, then start with 5000 mg and then go down as tests show your levels at or above required amounts. The key with vitamin D is like Magnesium, you also need vitamin K2 to help your body metabolize them properly.
Hope it helps.
i’m 73 now, so aging is part of my fatigue, I assume. Lately, I wake early in the morning, but fall right back to sleep, once, twice, three times. This is something new. I even spilled morning tea on myself!
This stupid disease is always changing. When you think you have a grip on it, it’s something else again. I am able to take Pilates, i/2 an hour a week. It helps me keep some strength and flexibility, though I spend the next few days in bed.
I remember well as a small girl, finding walking to the community pool, too exhausting. I must have been sick already, but without a diagnosis. Everything wore me out, and it still does. Meanwhile I’ve birthed four children, and am very proud of them. They keep me interested in the future, and are great friends in the present. I lost one son, Jacob, four years ago. That has been crushing. I think he was beginning to have fibromyalgia, too, as did my father.
We grieve the life we could have had, and must accept where we are now. It’s hard, but with the new technology we are not so lonesome. Love, Abby
Ann, thank-you for sharing your journey with us. I was diagnosed in 1991 with CFS/Fibro.
It seems alot of us report on our hiking and traveling prior to the onset. I hiked the Grand Canyon on several occasions, and did so prior to becoming ill.
I hear/read so often about Lyme Disease. Personally I was tested at IGeneX, a few years ago. My test came back positive. I shared the results with My Infectious Disease Dr.and he wasn’t convienced, so, he rerun the test at Stanford, and it came back negative.
For those of you that attended the The Symposium at Stanford, you may recall a physician that during the Q&A seemed very knowledgeable about Lyme. During the break she handed out her card, and briefly spoke to me about Lyme. I would like to have imput from other CFS?Fibro. patients, regarding Lyme Disease.
Blessings to all,
Penny
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Anne,
Thank you for your powerful story! I am sending it to my daughter, who is a world-traveling adventurer–from Kilimanjaro to Patagonia to New Zealand to Antarctica and much more and with plans to scuba dive in the waters off Iceland soon. Even a diagnosis of breast cancer at age 32 did not slow her down. I am always encouraging her to get plenty of rest given the physically demanding challenges she undertakes. Hopefully, after reading your story, she will understand why I am so concerned. I sincerely appreciate your sharing your story!
Wishing you the very best,
Foi
Anne,
Your story has many of the same elements as my own. I got CFS/ME at 30. My mode of seeing the world was by bicycle. I had traveled 10,000 miles on 4 continents by then, which included crossing the USA twice. You have stated the challenges in such an amazingly clear way. I too have chronicled my story in my memoir, Riding on Faith: Keeping Your Balance When the Wheels Fall Off. Thanks for this post.
Dear Anne,
Your story is all too familiar. I’ve had CFS for 7.5 years and my son has had it for over a year. One thing I found my son and I have in common are mycotoxins (mold toxins). We met with an Integrative Physician who tested us for a number of things and we were both found to have mycotoxins in our urine. I don’t know where you would test for this in Sweden, but there’s a lab that does this in the U.S., called RealTime labs. I am trying to figure out a way to move out of our home, to a cleaner area.
If you’re interested in researching this topic a little more, try going to paradigmchange.me. This website is written by Lisa Petrison, a patient-expert in this area.
Best of luck to you and to all fellow patients!
Gail
Dear Anne:
Our stories are so identical…as I’ve sat and tried to write my own recently, I feel like I could almost just copy and paste yours! (with citation 🙂 that would save me soo much energy!).
I had similar wide travels in twenties, similar career path, and now similiar severity of illness.
I want to echo an above commenter: I only relatively recently began seeing Lyme-Literate MDs, were it was suggested tick-disease could be part of the problem. I don’t know if it is possible to improve if some of those hidden infections are treated (possible that I could easily worsen during such attempts)….but, it’s given me a little hope. So far ME/CFS antiviral treatment etc has not helped, yet.
Being very active outdoors as I was, I think it’s quite possible for you as well. Over 300 strains of lyme worldwide, not to mention co-infections (mostly bacteria/parasitic)–that are extremely hard to detect with current blood tests.
Sorry if redundant and you have considered; it’s something I sort of refused to consider for a long time given what ME/CFS have thought of my case, but now think it’s part of my story at least…Yet to see if this knowledge will do me any good!
Best of luck… to all of us.
HTree
to write so beautifully you must not be suffering the cognitive decline so many of us have of course it depends on how long it took you how often you used spellcheck etc
to see the massive good cort does with his advice and to have grown up with him as he improved both his health and abilities to help people I see a role for you to pick a task and have a major influence on sufferers who have not got your obvious talents
it wont cure you but I bet it will make you feel much better
an issue we all should be trying to be involved in is these young kids the psychiatrists have locked up what a sick profession it is
I am ashamed I do nothing about it
anyway I have gotten way of the track I just meant to wish you all the things you would wish yourself and god bless
I suffer bouts of chronic decline and then have the odd time when i revert back to my old self…articulate and able to string more than one sentence together. I don’t get giddy anymore…when i revert back to the decline , i can not even remember the simple words to describe everyday items and end up doing a bad version of “give us a clue”! One thing i have not lost is my SOH…god help me if that ever disappears:) Hugs X
Hi….after reading these posts, it seems that a large majority of us have suffered this disease after leading very active lives!
I too was very active…always running at 100 m.p.h…completing a RTW tripin 2006/7 where at the age of 45 i backpacked and almost every day was an adventure.
Unfortunately, i was bitten by a tick in Kruger and when i became ill on my return, was diagnosed with suspected Lyme Disease and then M.E/CFS.
This has basically “cut me down”! I can be ok for days and then make the mistake of overdoing it by something as simple as walking around the shops for too long/over doing the cleaning of a 2 bed flat and thats it…3 days exhausted, in pain and unable to function properly.
My aspect on the world is the lounge window…where i constantly see people going about their daily lives and feel jealous of them and angry that i am unable to even get on a bus without falling asleep or take my dogs for a walk without coming back and sleeping. Stress just increases all these symptoms tenfold and unfortunately my current doctors appear to be “ignorant” to the fact that this is a Chronic condition and disables you mentally,physically and socially.
I have BiPolar and my consultant at the moment dismisses the M.E/CFS as a pschosomatic illness (although to be honest…he dismisses most things with the wave of a hand and a sweeping statement).
The M.E clinic i attend can only offer me CBT…great..years of travelling to a clinic to chat about it and then go home and collapse in a heap because the trip is stressful and my brain fog does not like large groups or too much chattering…i just shut down and go into a twilight world!
I have suffered severe depression, often feeling suicidal, lost friends because they have been flippant about the condition,relationships all suffer and my own mother even dismissed me as a malingerer!
Prison without bars is a good way of describing this condition…hopefully one day we can all be excited when someone decides that this is a REAL and CHRONIC condition which needs research and funding to break the barriers!
Stay safe y’all XXXXXXXXXXXXXXX
Dear everyone, thank you so much for your comments and for the many nice words! I’ve had a tough few weeks since the post was published (have been almost totally bedbound) – so I haven’t been able to comment until now.
I’m glad my words resonated with so many of you. It does seem like a lot of us with ME/CFS previously had very active lives, doesn’t it? Which in a way makes the fall even worse…
Thank you for the advice about letting go of the thoughts about what would have happened if I had gotten good advice about resting and pacing from the beginning. In fact, since many years I’ve found acceptance regarding this, I don’t live in frustration – I have gotten pretty good at coping techniques (I’m actually planning a blog post on that! ;-))
But when I wrote this text for the Swedish book “Fatigue is the Wrong Word” I wanted to make a very clear point of the necessity of early detection of ME/CFS and relevant advice on resting and pacing. So many ME/CFS patients have deteriorated after being “pushed” by medical advisors, so many have been permanently hurt by GET – and the numbers are ever rising. This was a chance to spread awareness about these dangers and hopefully give a few other patients the chance of at least doing all they can to stabilize their ME/CFS.
In the decade since my diagnosis was made (three years into the illness) I have spent almost all of the scarce energy I have had on advocacy to bring about proper biomedical ME/CFS care here in Stockholm and Sweden and biomedical research worldwide. Sadly, as I get worse I can contribute less, but we all need to pull as much as we can, in the way we can.
I hope all of us one day find ourselves in a better situation. Much love to all of you.
Anne Ö
Thanks for having the courage to be so honest about ME/CFS, you are such an inspiration! I too was told by my doctor to exercise at the very beginning of my diagnosis, but due to me being hit with both Mono and Shingles could not. I could hardly lift my hands over my head so it is silly to me that she would have made such an ignorant comment. I look forward to reading your blog on coping with ME/CFS :).
Have you tried hyperbaric oxygen? It saved me once, but I’ve been hit with this horrid disease again, so I purchased a hyperbaric chamber for daily use. Good luck and never give up!!
Oh so sad, Laurie. Anne passed away last year! Thanks for trying to help her though.
https://www.healthrising.org/blog/2018/01/10/farewelll-last-post-anne-ortegren/
The cause of cfs is chronic psychological stress
While it’s certainly true that psychological stress doesn’t help, it’s literally impossible for this to be true given the many, many people with ME/CFS who were healthy until they were suddenly felled by an infection. Of course these people had had infections before which they recovered from so it wasn’t that they were stressed out about having an infection. We’re seeing the same thing in the long COVID patients – most of whom were never hospitalized – most of whom were younger and had relatively mild infections (so far as COVID goes) but never got well. That’s way too short a time for “chronic pyschological stress” to play a role.