I felt particularly sick for a long time before our trek out west from New Jersey– woozy and aching and listless – and liable to crash miserably after almost anything, like unloading the dishwasher or washing and blow-drying my hair.
Maybe, as my husband hypothesized, anticipation of the trip was stressing me out. But I saw another possibility. I’d been on Imunovir for almost two years, and the antiviral Famvir for months. When Dr. Rey explained that my early misery after starting Famvir was the usual die-off, I felt encouraged, and I know that anti-virals take a long time to show good results – but here, on the verge of a long trip, I feared I was too weak for the Tucson- by-car and then Hawaii-by-plane adventure/ordeal. I made a decision: Stop the meds and see what happens.
The result: I began to feel a bit stronger and less liable to crashes. And then I thought, goodness, I’m 70 years old and have been fighting this disease for 15 years, which, I know, isn’t that long when compared to others.
Yet, at 70, how much time do I have to experiment with treatments? And what’s the point of experiencing the side effects of medication with the view to a later recovery (whether partial or full – which would be at this point a miracle of biblical proportions). I’m already an old lady.
How many years of “wellness” will elixers and potions and prescriptions offer me, after pummeling me with die-offs and other side effects?
Would I be better off just “leaving well-enough alone”?
I’ve been off the meds now for almost 6 weeks, and feeling just about the same level of illness as after I first stopped. I still have discouraging crashes with too much activity and have to work hard at resting and pacing myself. (Isn’t that an oxymoron: “work hard at resting” ?) I don’t feel, however, as if some poison is snaking through my veins looking to wreak havoc.
Of course, I’ve started and stopped so many other treatments, and by now I’ve lost perspective and the energy to tolerate difficulties. I’m tired of trying to figure thing out when there are always so many variables. I believe I stayed on each past treatment long enough for a fair trial. But who knows? Do Imunovir and Famvir really offer another possibility I’m giving up on prematurely? But, like I keep saying, I’m 70 years old. That’s pretty mature. In fact, it’s verging on postmature.
By nature, though, it’s hard for me to do nothing. I still read and wonder about the variety of approaches out there, like Rituximab and Methylation and the Paleo diet. (Just listing even these few sets my brain spinning.) I’m really interested in the possibilities of HealthClick, as described by Cort and Joey Tuan. I’d love to connect with other postmature sufferers of ME/CFS and find out how much they are still invested in trying new treatments. Anyone out there 65+ in a similar situation?
I have my yearly appointment with Dr. Rey in the summer. I brought my meds with me to Tucson. Maybe at some point I’ll decide to return to my Imunovir and Famvir cocktail, concluding that I’m not better enough free of them. In 2013, after a year of Imunovir, my immune system labs were no better, and my HHV6 levels were still high, which is why she added the Famvir. Maybe I’ll give it another chance and see if the labs improve in 2014.
I will keep following the procedures and (hopefully) progress of the (controversial) Institute of Medicine contract to determine diagnostic criteria, as well as the new and continuing research that seems to have blossomed after the XMRV controversy. I’m heartened by reports of various new findings and approaches. But then I ask, who am I fooling? How much can breakthroughs really help a 70 year old who’s been ill for 15 years?
At the age of 55, I was conditioned by a lifetime of good health to assume that good health would return after the illness that followed the flu shot; it never dawned on me to think otherwise. Now, in the same way, I’ve been conditioned by 15 years of ME/CFS and all the futile treatments to believe, with the same confidence, that anything I try will result in basic failure. Up until now, I’ve always talked myself out of that pessimism; note how I’ve been dragging myself (and my husband) to Florida to see Doctors Klimas and Rey. But then the realization came with a startle: I’m 70 years old!
I’m not going to stop learning and wondering, and I love that there is hope for younger ME/CFS sufferers. Whether I actually try anything else, after all my previous attempts, depends on many factors – mostly involving side effects, both long and short term, cost, and the need for travel. Right now I’m holding onto a tenuous but familiar relapse/recovery cycle (I’m writing this from my bed just starting to perk up a bit after a recent relapse) that I’m not sure I’m ready or willing to tinker with.
There is always hope and that is what keeps us human beings going even in the most difficult situations. For me giving up trying find answers and relief for my health situation would be akin to giving up altogether so I had to keep fighting this way. Fortunately my efforts paid off and I found the therapies that brought about a gradual and real recovery. Not everyone is so lucky or has the resources to do what I did. I have a lot of compassion for all those suffering from chronic illness. Its a precarious existence and we each have to find our own way. Some find solace in faith and spirituality. They make some kind of peace with their illness. I don’t think this is giving up. As long as we can make some contribution and find some meaning in our personal lives we are not giving up. Whether we recover or not there is always hope.
I wrote a blog post called “Hope” that you may find helpful. http://fibrofriends.typepad.com/fibro_friends/hope/
Hey congratulations on getting better (and nice blog :))
Nice Blog,
I totally agree. Been there, done that for 10 years. ha ha ha.
Like you, I got through it, much like you I think, but without many drugs, but lots of everything, I think you will know what I mean.
Thanks to Cort too, for all his good stuff.
Howard
A survivor
Like many, I’m approaching the giving up after many knockbacks, but I’m taking faith with me along the way and it’s never let me down yet.
Writing everything down as part of my own lifestory is something, which not only keeps me going, but also knowing my family will read about the struggles and the history behind the real ME, when the truth emerges, along with real help, is my saving grace.
It’s amazing what the power of the mind can do. SCIENCE ASSUNDER, belief becomes true.
We know we are ill – let the world know through your written words.
Well Done and hold on to hope – it never goes away
HOPE
Hello Cort and staffers,
I hit my limit with the search for improved health about a year ago. I am now in my sixties and I learned more and more that the extreme highs and lows of this illness were causing more symptoms than it has since I gave up the fight.
I still care for myself appropriately and take my meds faithfully. However, I am no longer dealing with the excitement of thinking we’d made a breakthrough, only to have those hopes dashed in various ways.
I spend most of my day in my easy chair, on the computer or knitting or watching something educational on the television. I watch what I eat, staying away from gluten, sugar and dairy. They contributed to my symptoms also. Best wishes to all! Someday people, someday!
Brenda
It sounds like letting expectations go and the desire for it to be different than it is has helped. Reducing frustration and anger certainly should help with symptoms. Glad you’ve found more peace 🙂
I reached this long ago.. having been at this for going on 20 years now.. in my lexicion.. if medication does not directly help the symptoms.. or gives me ANY bad side effects, it goes on a growing list of NOPE not doing those.. I tried all the knowns back in the day.. none of which did anything useful.. and I have yet to see good results from anything new.. show me impressive rates of real improvement .. and not just studies.. have learned to distrust them too.. I wanna hear from the mouths of those who have taken it.. show me that X works with minimal side effects or after effects.. and I might consider it ,.. otherwise.. I take only what will ease the pain, the ibs, the allergies etc. in short to improve my overall quality of life ( and I take dozens of herbs and vits to do real healing by giving the body the tools it needs to rebuild what the disease tears down.. otherwise.. I am with you.. enough of being a guinea pig.. quality of life has to come first at some point..
Yes, the best advise my cousin the doc said after coming to visit me from Canada expressly to take a look at my medical records (as a favor to mom) was to kick back for five years, and then take another look to see if the docs have been able to figure something out. He cautioned there will always be docs wanting to use me to test pet theories but that might not be in my best interest. Since then I have had some hard knocks with one thing or the other, but I chose to spend my time and energy on my personal interests and not looking for validation, chasing ghostly cures, or recovering from doctor appointment frustrations. I am not yet 70 but not so far away. My first diagnosis with ME was 1985/ CFS was added 8 years later 1993/ Encephalitic Lyme 1998/ Parathyroid Adnoma 2009/ occasional mystery flairs with some really good days in-between as long as I stay off the meds, stress, and former life script.
SOUNDS JUST LIKE ME. I HAVE SO LITTLE ENERGY, A TRIP TO THE DOC IS HUGE. I NEVER HAD ONE WHO UNDERSTOOD CFS, SO I’VE STUDIED & USED NATURAL PRODUCTS–LOTS OF VITAMINS, ETC, USED TO BE ABLE TO GET WALKS. BUT THE MONEY RAN OUT, THE ENERGY RAN OUT & BEING TOLD TO BE POSITIVE & ”THINK MYSELF BETTER”, GOT PRETTY OLD. I EARLY ON DECIDED THAT EXPERIMENTING WITH DRUGS WAS NOT THE WAY TO GO. I DON’T NEED TO EXPERIMENT TO GET WELL, ONLY TO FEEL WORSE. MY BELIEF NOW IS THIS; WE STILL DO NOT KNOW WHAT CAUSES CFS, WE HAVE SOME IDEA WHAT IS NOT FUNCTIONING PROPERLY BUT NO IDEA HOW TO FIX THAT! SO WHY R WE WASTING OUR TIME, ENERGY & LIMITED FINANCES TRYING TO CURE THIS DISEASE?? UNTIL WE ”KNOW” THE CAUSE, THERE CAN BE NO CURE! SIMPLE. I’VE LEARNED HOW TO HANDLE MY SYMPTOMS THE BEST WAY I CAN. I DON’T HAVE THE MONEY FOR DRUGS, FOR TREATMENTS, OR EVEN FOR LOTS OF HOLISTIC PRODUCTS, LET ALONE LOTS OF THE HEALTHIEST FOOD! I HAVE MY DAILY SCHEDULE–I SPEND TOO MUCH TIME ON HERE, I HAVE TV PRORAMS I ENJOY & I LOVE GOOD BOOKS! I HAVE A FEW GOOD FRIENDS & A GREAT FAMILY WHOM I’D LIKE TO SEE MORE, BUT SADLY IT TAKES SO MUCH OUT OF ME & I’VE LEARNED HOW TO REGULATE THAT, TOO. MY DAYS CAN BE TEDIOUS, BORING & I SPEND MOST OF MY TIME IN MY BED–MY BEDROOM OFFICE! BUT, I KNOW MY BODY, I KNOW WHAT CAUSES A CRASH & I KNOW WHEN I’M ABLE TO DO MORE–A LITTLE MORE! I’M NOT NEAR AS ILL AS SOME–PERHAPS BECAUSE I DON’T EXPEND ENERGY ON GETTNG OVER CFS? THE HARDEST PART FOR ME NOW AT 69 IS THOSE DAYS OF ”PSYCHIC MALAISE”! THAT IS TOUGH, BUT I KNOW IT WILL PASS. THE DAYS GO BY SO QUICKLY & I MISS SO MUCH, BUT I’M USED TO THAT. I DO MY BEST & OF THAT, I CAN BE WELL PLEASED! IT IS WHAT IT IS.
Thank you for your words. I am just so happy to read of somebody who is older with ME. I have lost hope recently that I could even reach that age. I am 48 and feel old with so many young people out there with this illness.
For some reason I have always thought I would die when I am 55 – ridiculous but had this thought since my teens. The effects of ME on my heart – currently under investigation – has frightened me. I have had ME for 8 years, just given up trying to work – went to a few hours from more hours from full time – just hopeless
I know the “fatigue” of hope and trying new solutions. I am also looking at Paleo and sort of preparing lists and reading up before embarking. I keep my hope but am exhausted of people sending me new ideas – maybe one would work – of beetroot juice, yoga, living without electricity and the list goes on.
I feel I want to choose my “battles” to try towards improving my health. I think something like Paleo might be worthwhile in at least it will improve my body’s overall health. Mindfulness gives me that sense that I am helping to look after my mind.
In the UK we do not seem to have the same in-depth trials of different medications – bit more simplistic with basic anti-depressants, pain killers, anti nausea – although that could be just my area as we have no ME specialist or centres in Berkshire!
Please keep your hope. I can now sit and wonder how great that it is that you are there. You have given me hope.
Thank you.
Sally
Hi Sally,
I also live in the UK and was diagnosed 7 years ago although suffering for 9 years.
Once diagnosed I was offered and accepted CBT for 8 weeks but then left out on a limb since.
I am really interested in your thoughts on the Palea Diet as just started to read about it?
I have been doing the Candida Diet from the beginning of this year. A similar concept, no fruit though or sugar which as I am sure you will symathise is very difficult especially when you are really tired.
It also incoperates no yeast, fermented foods or caffine.
Friends have said I visually look better but as yet I have not felt any overall difference in my health.
I am giving it a good three months trial and doing a daily diary to give a fairly good reflection of any improvement.
Have you joined Healclick? the blog recommended by this site ? It is great to discuss treatments and peoples views on them. Please look me up on it if you decide to join. Effie
Thanks for your ongoing story, Carol. I’m 61, and I’ve been trying things to make my FMS and ME/CFS better since I was 51. Mostly I’ve gotten symptomatic relief from Valcyte, sleeping aids, pacing, Lyrica, muscle relaxers and thyroid hormones.
I’ve just come out of about a 4 year period of saying Eff-it. No more experiments. Now I’ve just gathered the supplements to try out the simplified methylation protocol left us by Rich VanKonynenburg. I’m trying it because I found out I do have the MTHFR gene mutation that is supposed to mean I might benefit from methylation. Just thinking about starting it makes me feel, Ugh!
If I make it to 75, I’m going to stop reading stuff about my diseases and do whatever I please whenever I please–to the degree that I can. I think you’ve earned the right to do that! (Matter of fact, if this methylation thing doesn’t work for me, I might just start at age 62.)
Best regards and best of health with pacing to you!
I’m with you Carol. I’m pushing 60 and after nine years of staying away from CFS docs, I went to a CFS specialist and tried Imunovir, famvir and LDN. A year later after feeling worse if anything and unable to get my lab test kit for EBV I quit the drugs. Lots of time and especially money down the drain. Maybe next time…
Hi Carol
I am now 62. I was diagnosed with this illness 23 years ago, but I can now recognise that I had these symptoms in high school and had trouble explaining them to people. My first specialist hypothesises that I’ve had the illness since Hepatitis C at the age of 7. That makes sense in view of aspects of my primary school years.
I am high functioning, having had no other option with an undiagnosed illness. And fortunately I did not ever reach the debilitated stage that many others reach. I taught myself strategies to cope.
It was only when I had to give up work in 2005 that I was really able to start looking at treatments. The more I looked at other people I know, the more it seemed to me that their lives were dominated by these treatments. They would explain to me how unwell they felt, but that it was to be expected in the early stages. Then a year or so later they’d say that they THOUGHT they felt a bit better after the treatment. I wondered if they could remember how they felt before they started, or if the improvement was only feeling better than they had during the die-back phase. I became sceptical.
I also saw people who had spent thousands of pounds on treatment that had not helped them, and I know I can’t afford that. I’m also aware that I’m in the category that went undiagnosed too long, and therefore is unlikely to see much improvement.
My response so far has been to try several small interventions but not things that are too costly or too life-sapping. Too many years of my life have been diminished because of the illness and I can’t afford to have more years diminished in a search for a possible ‘cure’. I have found some small relief from various supplements and diet modifications and at the moment I’m able to walk for 10-15 minutes per day and even do a bit of ballroom dancing from time to time. It’s been wonderful to have given up work and not have to put all my available energy into that. Now I have some energy for myself.
Carol, I would ask what you are working towards. You have spent years feeling terrible in the hope that you will have a few good years. My advice would be to sit back and relax and work out what you really want to do. What makes you happy? How can you fit that into your life?
I love going on cruises. I have more energy on that type of holiday than any other, because there are people looking after me and I don’t have to use energy wondering about meals or what to do. It was a cruise that got me back to dancing after 25 years away from it. There are one or two days each cruise when I get up and decide I need to go back to bed for the day. That’s okay. I missed Valencia and the Suez Canal and one day of Monte Carlo, etc. – but I’ve seen so many other places! (And it helps that I’m only about an hour’s drive from Southampton, a major cruise port.)
I hope you can find your own equivalent of cruising, and will find enjoyment and peace for the next years.
Yours warmly
Diane
Carol,
I’m 62 and have been ill for 5 1/2 years. I retired 2 1/2 years ago, and have gotten worse since then, which was not what I expected. I know exactly how you feel about the search for the treatments, as I have tried immunovir also and don’t feel any better. Pacing myself is really difficult and I’m not doing a good job of it – still having a lot of “push” “crash” experience.
Thanks for your blog!
I AM PRETTY CLOSE TO YOUR AGE I HAVE HAD had CFIDS or what ever it is FROM a Mono, CMV INF
FROM 1989. I HAD ALMOST COMPLETE REMISSIONbELIEVE IT OR NOT BY NOT TALKING TO ANYONE ABOUT IT OUTSIDE OF THE FAMILY, IT JUST WORE ME OUT AND THEY DIDN’T UNDERSTAND ANYWAY. I WAS ALSO TAKING IMMUNE GLOBULIN INJ AND B-12 WEEKLY AND EATING HEALTHY.WALKING EVERY DAY.
THEN 6 YEARS AGO MANY STRESSORS CAME INTO MY LIFE. MY HUSBAND HAD AN ACCIDENT-7 SURGERIES IN 11 MO. IT HAS COMPLETELYCHANGED WHO WE ARE. HE IS OVER THE SURGERIES-I AM NOT. THEY ALSO QUIT MAKING MY IMMUNE GLOBULIN AND THE SUBSTITUTE DOES NOT WORK FOR ME.WENT BCK TO CFIDS DR FROM YEARS AGO.
I FEEL BECAUSE OF MY AGE NOW HE GAVE ME STANDARD TREATMENT FOR EVERYONE.!!!!.HAD TO ASK FOR BLOOD TESTS. ABSOLUTELY HE SAID I HAD HEART FAILURE. THE DAY I WENT INTO SEE HIM, I HAD WALKED 2 MILES BEFORE THEN.
TOLD ME TO STOP EVERYTHING. EVERYTHING HE GAVE ME WAS OVERKILL.
4 MONTHS AFTER THAT I QUIT (LIKE YOU) EVERYTHING HE HAD ME ON AND I HAVE STARTED FEELING BETTER.. HE HAD ME ON HIGH DOSES OF MAGNESIUM, I BECAME SO WEAK, I STARTED HAVING BREATHING PROBLEMS. I THOUGHT IT WAS THE HEART FAILURE. WENT IN TO SEE 2 CARDIOLOGIST HERE AND THEY SAID I HAD NONE OF IT. THE DID ECHO, 30 DAY HEART MONITOR. EKG AND BLOOD TEST. NOW UNDERSTAND ,
THESE WERE CONVENTIONAL CARDIOLOGISTS NOT CFIDS DR.
WHAT REALLY HAS HELPED ME IS THE CPAP MACHINE AS I READ ON ONE OF THE BLOGS ABOUT SOMEONE USING IT AND THE SUCCESS THEY HAD.I WAS NOT BREATHING UP TO 30 TIMES A NIGHT.NOT AS BAD AS SOME PEOPLE-BUT I ASK MY ENT PHYSICIAN TO SEND ME TO A SLEEP SPECIALIST . BEST THING I EVER DID. MY ENERGY LEVEL IS UP AND I BOUNCE BACK BETTER AND QUICKER. I AM EXERCISING AGAIN SOMETIMES IN BED OR FLOOR-PRONE POSITION. SPACE HAS RUN OUT ON PAGE. CAROLE
Carole’s amazing story is one possible reason not to give up 🙂 She needed a CPAP machine!
sORRY – RAN OUT OF SPACE. ANYWAY-I AM ON VERY LITTLE MEDS BUT I DO TAKE HYDROXY B-12 INJ DAILY AND MANY VITIAMINS THE BEST ONE IS THE GIFT LIG HUMIC ACID I TAKE 3 TIMES A DAY. AND SLEEP 8 HRS AND A NAP.. I WAKE UP REFRESSHED WITH THE CPAP MACHINE.
GREAT.
CAROLE
I’m such a baby to you people !!!! onto my third year.
My hat goes off to you for your ability to TRY for so long.
Methylation, is that to do wih the B12? I take that, only dicovered the defiiency through live blood analysis in December. It was like giving me oxygen 🙂 🙂 🙂
Also, can you see if you can access Hyperthermia. I have had 6 sessions, again since December. Its to retrain the immune system to come to fever. It gets oxygen deep into the tissue. My bdy feels aerated, no longer this massively heavy body to drag about.
By no means am I a miracle cure, yet 🙂
but I feel like some good days might be heading my way.
Unfortunately I have to do heavy metal detoxification, for a long time, and that really knocks your body about. 2015 should see me well down the detox track.
Someone mentioned a flu shot above, sorry forgot the name nd not up to re-reading, but have you looked at the Mercury Diaries or Alison Adams website???
Take care people
once again your stamina and persevernce is a credit to you xx
I don’t know how long this vicious illness has been inside of me but I know it beat me in May of 2012. On that ordinary morning I had my usual 3 or 4 violent diarrheas before draging my poor body to work before my team arrived. Usually the first to arrive, the secretary was there that morning since it was already 8. I had run out late without even noticing it!
She looked at me and asked me what on earth I was doing there in that state. She said that compared to me, Dracula looked like he had a sun tan. I couldn’t stand still without losing balance, my legs were shaking, I was sweating…. I came back home.
Since then I have seen so many doctors that I could not tell their names. I have been diagnosed with labyrintitis, gougerot syndrome, depression, multiple sclerosis, liar and fake. I have been rejected by people who just don’t know how to handle this different me, laughed at and pitied for talking so slowly, called a drunk and treated as if I was retarted. All that in less than 2 years.
With this short experience I learned that high above overexhertion, what hurts me the most is hope. I flew so high on its wings and fell so hard that I sometimes think that all those pains I have come from those imaginary bones I brome.
Do I understand your desire to give up ? You bet, I do. I am giving up at least once a week. Yet, my catches “new study” and it’s back to square one. I wish I could find the switch to turn that hurtful thing off since I’m slowly trying to think that I may very well have a huge birth defect…. I don’t have one !
I hope you do.
I identify with every word you’ve written. I got very ill at 38yrs and will be 65yrs
soon. In the beginning I went to two CFS specialists, was well informed and an advocate, thinking I’d be well in 5yrs. Never happened.
A cure or treatment will eventually come but I just can’t wrap my life around that hope. Anything that I can do to help myself, I will but just what helps? There is no money or energy left to travel or put up with being sicker than I usually am.
I would never tell a young PWC to not seek answers, in fact people like that annoyed me in the beginning. There are treatments that can help and maybe cure but I never found a resolution.
So what do I do? I live like I’ve got a handicap (I do) and walk through the mine fields like a well trained military dog sniffing out the IED’s careful to “live” the life I have and not
step on a dirty bomb.
That dirty bomb can be anything, government and medical ignorance, nasty people, aging and hopelessness, but right now I’m still walking.
Keep walking Nancy. Let those dirty bombs bounce off you harmlessly as if you were an ancient elephant walking calmly through the forest.
I like that visualization…
I’ve had CFIDS/ME/CFS since 1989 when I was vaccinated with typhoid and meningitis vaccines before a trip to Nepal. I had improvement in 1996 with Jesse Stoff, M.D. treating me, then he stopped practicing. A couple of years after that I gave up on treatments. I spent 5 years with severe relapses of Epstein Barr, and isolated from my friends.
The problem with that, is that there was an explosion of CFIDS patients getting online (2004-2009), and sharing information, and an explosion of new treatments and research that I was unaware of. In my “I give up” attitude, I was missing out on crucial information that could actually help me.
I was embarrassed when I plugged back into the online flow of information and how it had grown exponentially and how I had missed out on getting information. Finally last April I consulted with Jacob Teitelbaum, M.D. I have gone now 13 months without a relapse of Epstein Barr virus, which is my main problem, through his protocol of supplements and thyroid medication. I also got through two major surgeries last summer (hip replacement and removal of lower lobe of my right lung when they found lung cancer. I am a non-smoker.) My fatigue has not lifted from the surgeries, but I am plugging away trying more treatments. Teitelbaum just treated me for Candida with antifungals, gut health is much better. He wants to put me on Valcyte but I am wary, not sure about that. He also wants me to try the methylation protocol. I should since I am homozygous for the MTHFR 1298C gene mutation and only methylate 40% of my folate. Sigh. It’s such a hassle to take all of these supplements, but it’s been great to not be so weak that I can’t brush my teeth and hair. That is a nightmare, as you all know.
My heart goes out to all of you. Hope is important. Doctors are taking this more seriously. I am also seeing a great naturopathic oncologist, Dr. Lise Alschuler. So grateful for good doctors, and that I have the means to see them. Good luck everyone!!! Hang in there!
I am 73 years old and have had CFS/ME for 20 years. During the first years, I tried all kinds of treatments, meds/supplements, different docs to no avail. I think during the first years I could still actually remember what it felt like to be healthy. But as time went on I think I gradually forgot. Intellectually I know I was once well and functioning in a satisfying career and loved to exercise.
But it has been so long now, I think I have accepted that this is who I am and what I am able to do, which is very little. I am mostly housebound and cannot sit or stand for any length of time. My sleep is very poor.
I take vitamins and meds to help me with anxiety and overstimulation. But that is about it. I have no hope of getting back to the way I was before CFS. But then I am also old.
The sad thing is, the research and treatment has not changed a bit in the past 20 years. Things come and go, but no real answers or treatments.
I hope that changes in the years to come, especially for those who are stricken when they are very young.
Sharon
Hi,
I became ill nearly 30 years ago. I was living in upstate NY at the time and doctors there are ultra conservative. I started with vertigo out of the blue in November of 1984 right before my 45th birthday. Yes, I’ll be 75 in November.
Except for occasional absences it wasn’t until I was going thru a period of relentless bronchitis and other infections that it was suggested I take the next retirement offer. I did – age 52 – I had been sick for nearly 8 years by that time.
Being able to go home and sleep and rest did help a lot. But then in a few years we had to sell our big house and my husband wanted to live in the south to play golf year round. We settled in Asheville, NC. I had a bit of a relapse going thru the ordeal of preparing to move and then moving. But I was quite lucky I could put one foot in front of the other and with no crashes from vertigo – just the daily spells of dizzyness.
I never found one doctor during those first 8 years when I was the sickest that truly understood what I was dealing with. They just wanted to pack me off to a psychiatrist. There was one – a chiropractor – he “got it.” He felt I was dying. He was glad when I told him I was retiring.
When my #1 son and his wife moved to Charlotte, we moved to Charlotte…. our grandchild was almost a year old by then. I wanted to be a close by grandma to babysit. I have to tell you it was very enjoyable but by the time I got home each night or he went home, I felt like death. But there was no way I wouldn’t have done it. Today he’s 17 and preparing for college.
Anyway, after we moved to Charlotte initially I found a primary care doctor who was extremely knowledgeable of both CFS and Fibro. It was a miracle to be taken seriously and to be helped. Ambien solved my sleep issues and he also emphasized magnesium. This was 1997. About 2 years later I went to see Dr. Charles Lapp, one of the few experts in the field of CFS/FM. He was extremely helpful putting me on clonazepam – after that NO MORE ANXIETY ATTACKS. Somewhere along the line – and I forget exactly when – the weakness had gone away. Dr. Lapp also prescribed B12 to self inject, which helped some with the fatigue issues.
So with Dr. Lapp and then a primary care doctor who also ran an alternative medicine clinic and did acupuncture, I was feeling the best I ever had. With acupuncture I no longer felt dizzy and began to forget about the danger of vertigo attacks. Dr. Lapp had diagnosed me with moderate CFS and mild fibromyalgia. So I was one of the lucky ones. But, according to Lapp and Cheney, we – the moderates – are the largest percentage of ME/CFS patients.
I have been involved in the Charlotte support group since moving here. I had back surgery – actually 2 – so that stopped some of my activity for a while but I was able to continue my newsletter for the group. But I gradually got so I could attend meetings. My husband had bipolar and went thru many periods of spenting $$$$ like he could aford to throw it away. He finally consented to get treatment and it worked like a charm “thankfully.”
But then my husband’s many other health issues began to seriously affect him particularly when they found lung cancer and he was also diagnosed with dementia. I slowly had to take over everything in addition to looking after him. But I managed. I was always so thankful that I wasn’t more seriously ill. He died a little over a year ago and that was quite a shock to my system but things are leveling out for me now.
So I’ll be 75 and celebrating the survival of ME/CFS/FM come November of this year. I can’t afford to try new treatments so I don’t have to make choices regarding treatment other than what I’ve been doing for years now. At the time of my back surgery gabapentin was added for neuropathy that had developed and I also get botox injections for the neurologically caused dysphonia – a voice disorder.
I no longer care that my house is in disarray all the time. At first I worried about getting things sorted out and dealt with so that I could move into an apartment so I wouldn’t have to deal with house repairs and yardwork. But I felt like I was going around in circles and the dizziness returned off and on until I finally turned off the caring mechanism and decided it was time to just let the Lord handle what I can no longer do.
Thru all this I felt since I was one of the “lucky” PWCs, I should always do something to help others thru the group and with the newsletter even though there were days I felt I just couldn’t do it anymore. But I’d get thank you emails and those would put me back on track. Helping where I could was a “calling” not that I could do a lot but something.
I still help with the support group and continue the newsletter I also make jewelry (my bead room looks like a bomb hit). I am gradually getting things sorted. We had been married for 53 years so there’s a lot of stuff to go thru. But I am so grateful I lived near a specialist. I’d be a mess if not for Lapp, Bridges, and my acupuncturist. I just wish the sickest people were getting the kind of care “they” need and that research would really focus on them but at the same time convince whoever has to be convinced to get doctors taught in medical school about this illness as well as the entire system of health care.
Its a travesty that after 30 years (and more) our government is basically ignoring us. I read in the “Canary” documentary info how $2M is spent on our research while 3 or 4 times that much goes into male pattern baldness.
But the issue here is about continuing to try new treatment. That’s a choice only the individual can decide, but knowing what I know and if I were sicker and had the financial resources, I’d keep trying to find more help even at 75. My mother passed away in her sleep at 93 so I may have 15-20 more years of this. Good luck to all of you who want to keep trying. May God Bless You.
Hi Carol, your so brave to put that in writing. I have thought it so many times yet still cling on to the hope of complete remission.
I am 70 years old and have been battling CFIDS since 1981 though with hind sight I have had spells of it throughout my life. Having had the methylation panel done I am convinced that my SNIPS set me up for CFIDS and of course you know about all the things that tip the balance and send us spiraling out of control.
I am now in the fortunate position of being able to function near normally for a good part of the day providing I listen to my body and take a nap whenever needed. I still have to walk through the minefield of food allergy and chemical sensitivity but I have learned a lot about what does it for me.
I have seen three of the main CFS specialists over the years and have learned something from them all. Just a shortlist of things that have helped me are:- B12 injections, magnesium oil, chelation therapy, TM, gut testing and treatment, regular massage and bowen therapy, GcMaf protocol, Wobenzym as and when and of course vit and min supplements. I no longer do anything that hurts.
Learning that I have a double snip at MAO A and treating it has been a revelation for me and a bit of a quantum leap in my wellbeing. It’s early days yet, but as always I am the eternal optomist. (I must have a double sip in the optimism gene as well! 🙂
Love and best wishes,
David
Dave,
Congratulations on achieving near normalcy!
I’m 64 and have been fatigued almost my whole life but seriously so for the last 22 years. I too have a double snp at MAO A. What are you doing to treat it?
Sue
I’m wondering what a double snip at MAO A is?
CranioSacral Therapy has been a tremendous help to both me–age 71, and my daughter. We are both the victims of ME/CFS.
This is from Dee who left her comment on Carol Lefelt’s author page
“hi carol, i’ve suffered 16yrs. and i HAD it! i’m now 62 and i’ve tried hard enough and the last dr. was one of the good ones BUT he wanted to put some antiviral into my veins and that would take 3 days a week, for at least 3 months to try it and see. i am NOT strong enough to do his theroy so i GAVE up and only go to the dr. for the usual like a physical and pills and THATS IT!!! i wish i could talk with you since we both suffered so long and now seniors and i know no one that is my age with this. God BLess you!”
I am 65 and have had this illness for 28 years after a sudden onset of what I thought was the flu. Over the years, I have tried many of the therapies we all hear about, and have volunteered for every research study I qualify for, hoping that someone might benefit from the research even if I don’t. I haven’t given up but I no longer feel a desperate need to find a cure because, even if one miraculously appears, I doubt it will be that beneficial to me after so many years of damage to my body and the aging process itself. What I have learned, through trial and error, is that I am no longer willing to sacrifice years of my life to feeling worse while waiting for the treatment(s) to kick in and make me feel better. At this stage, if a treatment doesn’t show an improvement in the blood work and especially in quality of life, I won’t give it longer than three or four months before stopping it. Fortunately (or unfortunately), my body generally responds positively or negatively within a matter of weeks. I just started something new from Chisolm Labs at the beginning of January and am noticing a slight improvement in quality of life so will stick with that until it stops being beneficial. I suppose that reinforces that I haven’t given up entirely. There is something very liberating, however, in not being focused on the outcome of a treatment but being focused instead on living the life I have in ways that bring me the most satisfaction. There is still great joy in loving and spending time with family and friends and being able to capture the moments with my grandchildren who are so filled with promise for the future. It’s not worth looking back at a life lost to this illness when I can be looking ahead as their futures are unfolding before me. One advantage to reaching our age is that we really are free to make our own choices about treatments (or no treatments) without feeling any guilt or questioning “What ifs?” We’ve done our time and earned the right to be the best judges of what our bodies are telling us is or isn’t good for them. My you find peace in the process Carol, wherever that takes you.
Carol – I like the wording of your title, it contains a subtle but important nuance. Your question is not: is it time to give up? But rather: is it time to give up TRYING…
At one point in life, I dare answer: Yes, absolutely, no hesitation. My own ethos is to give up an one point all quest on the medical side, and to resort to a spiritual way of living with the illness and nothing else. And that is not giving up, it is resorting to an alternative quest.
If one were to ask me on my deathbed : “What have you done during the last 20 years of your life?” No way I would want to answer: “I sought treatments!”
That is, of course, unless we hear of an unbeforeseen medical breakthrough…
(by the way I love your oxymoron’ “to work hard at resting”! Indeed, the toughest job of my life)
I have noticed, no one has mentioned their liver.
All my liver enzyme blood tests are in the “normal” range, yet I have non alcohol sclerosis of the liver. Probably caused by die off toxins.
The liver disease was found by accident during a gall bladder ultra sound test by a friend who went a little beyond the gall bladder.
A non invasive liver ultra sound will do the trick, unless you feel that what you don’t know, won’t hurt you.
Is it Lyme disease? The symptoms are identical. Or, is it the sclerosis of the liver, that may have been there many, many years???
Do we all have liver disease? With out an ultra sound, we don’t know?
I’m 72, been ill for forty years.
Thanks for writing. I’ve been seeking solutions for 30 years this year and have just had my 70 th Birthday (Feb 1). I can’t overdraw on my energy bank. But still managing a bit of work and occasional outings. Have many acute symptoms so still seeing various specialists….
Hi Carol,
the day I stopped work and then……stopped looking for answers and cures for chronic illness and pain is the day I got my life back.
Sure I have to pace my day (especially in this scorching hot weather DownUnder), but I’d spent close to $107,000 and wasted at least 14 years in my 33 yr battle with pain.
When I took up a hobby which I’m now very passionate about, I really found out how much better one could get when the mind is focused on something besides health. Now, living on a Disability Pension is not easy and I can’t afford all the supplements I used to take, OR the perfect diet. I now know how to deal with all my other health problems including severe Hypertrophic Cardiomyopathy.
I no longer interact on health forums (or any other forum for that matter). I just do my own thing each day, get plenty of exercise (slow walking) and fresh air and have a load of fun sharing my photos and life on my PhotoBlog.
I think there comes a time in everyone’s life when you’ve got to stop looking for answers and try to make the best of what you’ve got – especially when you’re of a more ‘mature’ age (I turned 60 a couple of weeks ago). I can well understand young(er) folks looking for answers and hoping for a ‘cure’. But as we all have different symptoms and differing degrees of chronic illness, there are going to be hundreds (if not thousands) of different methods of treatment.
Recently, I was trying a new Thai rissole recipe with involved many fresh herbs etc. Since then I’ve been eating a big bunch of coriander (cilantro), mint and parsley each week in salads and meat recipes. I decided to look up the therapeutic benefit of fresh coriander (since I’d forgotten) and discovered it helped to heal viral attack (?). Now I just wonder if that’s why I’ve not been getting any sore throats, low grade fevers and so much IBS. I’ve also returned to my Paleo Diet 99.9% (which I’d gradually slipped away from) and feel energy not dissimilar to a healthy person. I also persuaded my Cardiologist to review my heart meds and halve them (and change the drug to a newer one).
All in all, when it all boils down to it, adhering to a specific diet which suits me, plenty of fresh herbs and lots of fresh water, slow walking on a regular basis 2-3 times a week and spending time with a hobby I love has been the best treatment of all.
Life is too short to waste it on the computer and in doctor’s offices. So saying, it’s cool outdoors today and I’m heading off with my camera and enjoying the rest of my day.
And so I thought it was all in my mind and a good dose of hypnosis complete with acupuncture would do the trick! It is not in my mind. People ask me why don’t I have a job? What can I say, they don’t seem to get it.
I have my art, which is what keeps me going and a loving husband who stops me from over loading. I have learnt over the last 30 years that after periods of activity rest is necessary, I thought I was maintaining a healthy diet, but after a live blood screening test, the goodness was not being absorbed by my body, so guess what even more expensive supplements to take. I do not think this is a new disease, it’s been around many years just that there is more media out there so we get to here more. A cure? As when I first got this fatigue thing I was asked ‘How long ids a piece of string’ and I have been strung along and spent heaps of money on that all too illusive cure.
This has really struck a nerve with folks, me too. I’ve thought of going to a specialist but when I read the blogs of those who have, and all they go through and they’re still not well, I wonder if it’s worth it. I do appreciate their sharing their stories with us so we can better decide what we want to do. One thing that does concern me by not going is that I’ve seen things on this blog I don’t know about, ie the gene mutation or the Double Snip at MAO A that Dave mentions, so I wonder if I could be missing something that a specialist would check me for.
I just came across a box of old CFIDS Chronicles and glancing through them it’s as if they could be written today, 20 years later, and where have we gotten? It’s very discouraging.
Hi,
Thank you to everyone for sharing their wisdom. I will be 67 next month and sick 28 years this summer. There is no cure for ME/CFS. That is the reality. Nobody really knows what causes it nor how to treat it. Some people recover in the early years by doing nothing but resting. Others find things that help them. Now, I hope for a cure for the young people, I hope for a cure for me too. But I don’t expect one in time for me. This has brought me much peace–living the life I have rather than the one I grieved for for so many years.
I’ve recently moved to Nashville by myself since my husband wants to continue working. As far as I can tell now, Vanderbilt University is about where Stanford was maybe 15 years ago. I wonder if anyone else heard the voice mail message years ago stating Stanford does not treat Chronic Fatigue Syndrome. Nothing is going on here, so while enjoying my own life, one of my pursuits will be to wake up what is supposed to be a “world-class” medical center and school! I did experience a dramatic improvement in my health two years ago (see below). And I am angry–really ticked off–that we’ve languished for so long with so little attention and research. So my job is to stir the fires here with my improved energy. I’ve started by doing my homework and writing the health report at the Nashville paper to find out more. I don’t want anyone else to have to suffer as we have.
(For those of you with IBS, long term maintenance Xifaxan has given me a dramatic improvement and I found that by accident. If you have IBS, you probably have SIBO ie bacterial overgrowth in your small intestine which has been proved to cause IBS. These bacteria in excess send toxins to the brain causing many neurological symptoms consistent with ME/CFS. You’ll know in a matter of days if the Xifaxan makes you better. Check out the work of Mark Pimentel of Cedars-Sinai UCLA to learn more.)
So my answer to the question posed is YES it is time for me to give up pursuing experimental treatments and NO it will never be time to give up hope. Each person has to answer the question for themself.
Easther,
I live in Tennessee as well. I was diagnosed with CFIDS 18 years ago by Dr Paul Cheney. He helped me with several issues but became too expensive for me to afford. My gut is one of my main issues and I strongly suspect SIBO. Is there a doctor in Nashville treating you? Thanks Al.
Hi Al,
I was just rereading this article because of the new one posted today. It appears I failed to respond to you and I’m very sorry. The gastroenterologist who treats me is in CA and not here in Tennessee.
It may be possible to find a gastroenterologist here who is familiar with Dr. Pimentel’s work on IBS being caused by SIBO. My suggestion would be to read up on Dr. Pimentel’s work and protocols and take them to someone who specializes in IBS and SIBO. Even a short course of Xifaxan at 550 mg 3X a day will tell you if it will work for you.
If you get worse again after going off of it, then you can consider long term treatment. You may have to go off and on a few times before your doctor will consider giving it on maintenance. Or she may want to try Dr. Pimentel’s protocols on you. The reason I need it on maintenance may be because I have gastroparesis which contributes to making the SIBO worse but that might not be the case with you.
If at some point, you want your doctor to speak to mine in CA, please email me at siebertesther@gmail.com and I’ll share his contact information with you. I’m afraid you may not go back to read this so I’ll copy and post it on the new article in hopes you will see it.
I have so far not been able to find anyone in Nashville, including at Vanderbilt, who treats ME/CFS. If you know of anyone, please let me know. I apologize once again for not responding promptly.
I see Howard Mertz at St. Thomas for my SIBO. I got his name from Dr. Pimentel’s office at Cedar-Sinai UCLA.
I am 67 and in my 28th year of being sick, although like many of you, I was sick long before I went completely down. I would like to share the optimism which others have, but I do not. Instead of hoping, I work on accepting. I take. The drugs I need to function at a pretty low level, and I also take a few supplements. I read about the new possibilities, but the reality of the situation is that in the US, I don’t believe that anything useful will be approved in my lifetime. I live in Texas where there are maybe 3 doctors who know even a little bit about CFIDS. So I am resigned to life as it is. There is still so much to be grateful for, so I try to focus so those things. It’s sort of the “accept the things I cannot change” approach.
“Many disabled or chronically ill people don’t see themselves for how much value they really have — let’s change that” is my personal vision, Francesca Owens.
Hi Carol,
I am Francesca from Italy! I just read your blog today… I know that feeling but I know it at 52! I get so tired of trying… and trying… with this damn illness…. But I am throwing out a crazy idea…. Currently at the deepest moments of despair… I decided to pursue my dream…
1st, my sister Janet died of breast cancer Oct 2013 and I felt I could not go further anymore… that this was close to the last straw… I had two sisters with breast cancer at that moment int time. Now Jan 2014, a third sister was just diagnosed! So three have it and one is dead. Then there is me… ME/CFS, NORB and all types of heart issues… So again in the deepest moments of despair, the onnly thing that made me have hope was my art…
So in 2014, I am creating a nonprofit: “BOHEMIARE… the art of making art with a social platform.” Aftre getting the IRS approval which has not yet been submitted… I will then be going aftre a kickstarter campaign to raise the funds. The nonprofit has a disabled twist. I want to recruit ME/CFSers and anynone who wants to help to push the art exhibtions out there on the internet into social medias…. They can choose any angle they want… the nonprofit part is to have “US” sickies have a way to have our voice heard… It hard to explain now in this letter, but here is my 2nd tag line. is above…
SO if in some little way, you would like to become invloved, just a little creating ideas for this idea to be placed out there, I invite you to become one of my tribal council members…
https://www.youtube.com/user/kaiserMECFS?feature=watch
Kisses, Francesca
FRANCECA–WHAT A WONDERFUL IDEA!! LOTS OF LUCK & GOD’S BLESSINGS! SO TRAGIC ABOUT YOUR SISTERS–MY HEART GOES OUT TO ALL OF YOU!!
Good article, very original.
I guess age is important to way into things when choosing what treatments one is going to trial. Why make ones last years of life miserable…… Im quite a bit younger so more desperate to get this illness in better under control while Im still young. Its making me miss my prime years.
Maybe you’d do better after taking a break from trialing things (I think we all need to do that at times).. of trialing something in which doesnt make you worst before possibly making you feel better eg methylation procotols seem to be of some help to many.
I’m not quite as old as you, although definitely mature. In the UK we don’t have access to many of the things you have in America – that protects us from some of the charlatans but also denies us access to promising treatments. Personally I decided to be my own guinea pig and try various things and I’m able to walk up hills (slowly, with a stop) when I once spent 3 days barely able to leave my bed and afraid of becoming bedbound. So I do encourage people to still try and improve but by being highly selective not chasing any treatment in sight.
What has helped me most was going gluten free – gave me my life back for some years until excessive exercise provoked my severest relapse. But after that relapse what helped was vitamin D, N-acetyl cysteine and ATP. I’m pretty sure silent reflux plays a part for a lot of ME sufferers and I advocate that everyone tries raising the head of their bed with blocks of wood so they sleep on a slope. Magnesium is a great help with pain and people dont always realses it can be absorbed through the skin – so dissolve 500gm of epsom salts in a warm bath, soak for 15 minutes and pat dry.
Note that all these re low key, relatively inexpensive and probably wont cause you to feel terrible. Quite a few of them are things that support your liver and I suspect that liver dysfunstion features for quite a few of us. Blood tests are not very reliable, fibroscan is better (one test where Brits are luckier than Americans).
If I take something and it doesnt make me feel better in a few weeks I usually stop (vitamin D an exception as I knew my levels were low). I’ve accepted that I’m never going to be well – but I’m going to fight for the sort of life I want to live and that includes being able to travel.
I am 47 and have had ME for 34 years. I often go through phases where I think I have had enough of trying various things but it never lasts long. It feels like an addiction. I often wonder if people who have other long diseases do the same or whether it’s because we have no other treatment or even care offered to us.
Sometimes I think I don’t want to live to old age like this, other times I just long to be able to see the day when it is acknowledged how much we have suffered. I don’t expect to see a cure when anti vitals and even anti retrovirals don’t seem to be doing the job.
I agree. The problem is there are subgroups and different causes for CFS. I think there is a chain reaction when the immunesystem is function not well. We have problems with the gut for example. This is one of the things Lipkin believes were the action is (primary?). But it does not explain the herpes problems like EBV,CMV and HHV (secondary?). Maybe you must take antiviral and probiotica etc…. but you need to know were the problems are for you individual.
Hi Carol,
I am 67 & have been ill since between 8-10 yrs. old. It has been a progressive condition for me & a simple gall bladder surgery finally finished me up. I believe it was because my adrenals were weak & took a huge hit. Since then, getting diagnosed with Addison’s Disease hasn’t help much with feeling better taking the necessary meds.
Like most of us, I too have tried multiple supplements, vitamins, herbs & modalities to no avail. I still try things that are affordable for energy help, but nothing has ever helped yet. Seems like people who sell that stuff know that we are desperate & will put ridiculous prices on everything so that it is difficult to even try some of the things suggested & saddens me.
I have a saying. I am not giving up, I am just giving in. I no longer fight it like I used to because I can’t anymore. It has won over the yrs. & that hopelessness is all too often a strong emotion that overwhelms me when I allow it to. We can only do what we can do without beating ourselves up since we didn’t do anything to get this illness. It is also hereditary in many families.
I do believe many have undiagnosed Lyme which has so many of the same symptoms, but many have the same viruses who share this condition, like Epstein Barr, (Mono), Cytomegalovirus, & HHV6 which comes from childhood chicken pox. There are other HHV categories as well. Someday, hopefully in the future, nobody will ever have to suffer the way we have at the hands of drs. who don’t understand, or choose not to. I would like to think it won’t be too late for us older people & that we will have our day in the sun yet. I guess I need to hold on to some hope.
I hate knowing how many others are so ill, but it gives me comfort to know I am not alone so that one day, this will be given much recognition, respect & $ for research in hopes of finding a cure.
Best wishes to all of you.
I meant to say that I was just diagnosed with vascular issues that are genetic, but also from being too sedentary, so it is in our best interest to try to keep moving the best we can. Sometimes that seems impossible, but we have to keep going the best that we can. Best wishes to everyone.
Twenty years after my first M.E./C.F.S. symptoms the diagnosis was narrowed down to neuroborreliosis,a Lyme/Babesia co-infection with mainly neurological symptoms.It seems that with adequate,reliable and precise tests,such as elispot LTT,50% of all M.E./C.F.S.patients turns out to be chronically Lyme infected.My diagnosis was made with Asyra Pro.It made things a lot clearer but I feel more desperate than ever because of the brain damage done.Three years ago I could watch a movie,nowadays 5 or 10 minutes of tv.
Kudos to everyone…here’s some feedback. Use it, lose it, make an imaginary paper airplane out of it, compost it. That we connect and share our experiences is what is most precious to me. Please be sure to read the end of this; I have an idea for something for
Cort. Time to stop being afraid I can’t pull it off.
Several years ago one of the organizations sent out a poll. If you woke up tomorrow and were cured, what would you do? My answer was instantaneous. I WOULDN’T BELIEVE IT!
I’m a 23 year “veteran” of CFIDS; will turn 65 in April. Been known since childhood as the eternal optimist. You may not all know the story of the two little kids in the room full of
manure. Here’s the CFIDS/FM/Chronic Illness twist. The one little kid sits down and starts crying. The other little kid starts running around the room frantically. The sitting child says “what are you doing”. The running child answers “I’m looking for a shovel cause there’s a pony in here”…
That was my attitude in life. There’s a problem, you look for the answer, and its always there. NOT! In this case, for anyone living with a chronic illness, the twist is that pony is a draft horse, and he’s on top of you. What are you going to do?
Am I still hopeful? I have that Emily Dickinson quote on my wall: “Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all”. My husband got me that, and there are some days, its all I can do to look at it.
We are more than our illness. I know that. But this illness is “holistic”; it strikes every cell, every part of us…all our bodies…physical, emotional, mental and spiritual. For me, I choose to be open, but after all these years, and the cyclic nature of this condition, I have to be mindful of focusing only on the illness. I have to look beyond it i.e. support my community, (bless you Cort and the CFIDS Assn.), be willing to share my story, support the few in the medical community who are open minded and compassionate, focus on what little I can do, think of others, know myself, be wary of my ego, and surrender daily to what is, not what
my old expectations demanded of me. And forgive, forgive, forgive.
Nearly the most influential doctor in this journey, was a doctor no longer with us, from Arizona. She was a ND, and an herbalist. She was a tiny thing with a briskness about her that made you nearly salute her when she gave instructions. Along with changing our diet, herbs and homeopathy, she asked us to give her a health history as far back as we could remember. My husband had endured 2 bouts of ulcerative colitis, so we both were patients.
I wrote down in one column what she requested, but also, wrote down in another column, where I lived, and what was going on in my life at the same time. I began to notice a pattern. This was part of my discovery of “self”, and what influenced me externally; physicians, treatments, lifestyle, and profession. Identifying stressors, choices, and consequences was part of the journey for me. Personal responsibility was key.
When diagnosed, I was given the option of antidepressants, and pain pills, and the words,
“this may go away in 6 weeks, 6 months, 6 years, or never”. Well, its never for me. And the
I’ve learned through the medical community that has begun at last to embrace holistic methods, that when I steer clear of antibiotics, watch my diet, exercise when I can, and watch out for “hardening of the attitudes”, sometimes I have small periods of my old life.
Through that exercise I began to connect parallels, and slowly become aware of how things affected me. I’ve dealt with ND’s, MD’s, acupuncturists, clinics, herbs, vitamins, prescriptions, and more modalities than you can imagine. Some help slightly, some just drain my pocketbook, or in our early years, our credit cards. Some things endure. Melatonin for sleep, watching any of the foods that cause inflammation. MSM for pain. I’ve read anything I could find, passed out more books to any doctor willing to accept them. Learned to not talk about my illness. Folks have their own journey to battle.
Each day I focus on being grateful. And for the days when this brutal Wyoming weather has me on my knees, I count my small blessings. Some days its hard to find them. Always my husband, and my 6# omnipotent poodle. Some days its a reach for that gratitude litany…lets see, I don’t live in a war torn country, somehow I got disability the first time I tried, 3 years ago, my computer seems to be working with me today, my bed-head, scare-hair has finally been subdued. I laugh at myself, I have to. The toothpaste tube occasionally ends up in my hand and spread on my face. Doesn’t spread well. There’s lots to laugh at, or I’d be in tears all the time.
I finally realized this year, 2014, that I will be 65, and I AM GETTING OLD-er. Not OLD, just OLD-er. Not sure how I got here. Want to live to see what happens in the next 35 years. Always did want to reach 100. Too many years in the mid-part of this illness, when the thought of always having this was unbearable, unthinkable…cruel. But somehow day by day, I’ve tied a knot and held on. And I intend to keep doing so. The days I think I can’t endure the pain, the IBS has me bathroom bound, my brain won’t function, and I’m unfit for human consumption…somehow something keeps me going.
Call it endurance, persistence, stubborn-ness…its abiding faith. We can endure, and we must. There are so many people in so much pain all around us, and we can share our journey, unite with that bond of humanity, and make a difference by sharing our experience.
So speaking of that ego…I’m letting go of a final fear…failing after committing.
There’s a project I outlined in a vision statement to Cort, 2 years ago. Being a recovering Type A personality I had it down succinctly. A self-published cookbook of sorts, with tips and insight, along with recipes from folks in our community. Proceeds to go to Cort Johnson, and Health Rising. What happened? We moved…again… 2012-2013 was AWFUL. Enough said.
My old ego-self said, “when I commit to a project, I always finish it, bring it in under budget, ahead of time, and done well”. Well, fears, and reality of the last 2 years crushed that idea. I’ve broached it to Cort that I’d like to pass on the project. Didn’t tell him why. Though I’ve switched to Apple products, the self-publishing part is beyond my expertise. If someone wants to take it on, I can write, collate, inspire, and assist. I’M COMMITTED…its my brain that seems to have a mind of its own…joke..
So if you have any thoughts, ideas, or tips, send them my way, and perhaps we can collaborate and pull this off. I apologize for the length of this. I read each and every one
of your replies, and they touch my heart with their candor.
Do we give up? NOT! The pony may be sitting on me, but my laptop is at my fingertips, and the light you send through your messages is received. Many thanks to Carol for being the
catalyst for these messages. Blessings to everyone…
Linda And yes, here’s my e-mail. I’m serious about perhaps pulling this book together.
linda.reed1111@me.com
LOVED IT LINDA! YOU ARE GREAT!
After almost thirty years with this illness, I believe if it hadn’t been for myself, my own research and my own solutions, I would still be in a very sorry way. I gave up on doctors years ago. On top of being extremely ill, trying to convince others that I was sick took up too much of my valuable time. I needed answers, not doubt, so I went looking for them on my own. I conclude, that unless you can unravel the mystery of your own case of ME/CFS on your own, you will wait an eternity for answers to come from the medical establishment.
AMEN TO THAT, RACHAEL! I AGREE.
Thank you Carol!
The thing that struck me most was that you seemed to relate the onset of your symptoms to a ‘post ‘flu-shot illness. I have always believed it was a ‘flu shot that kicked of my CFS – later I also received the diagnosis of fibro. This all started when I was only 37 but through a gifted Chinese Medicine practitioner I went into remission for a good few years but that practitioner left the country. Combined with lack of therapy, my stress levels grew until at 53 it all came back and this time, constant pain came with it. For the last 5 years I have again lived in that cycle of desolation, hope, failure, disappointment and resignation.
I don’t know if I have given up reading the research on new trials and treatments (I’ll be your age before they get as far as Scotland in any case) but I won’t have to worry about new treatments because they won’t be available to me here on the NHS and I can no longer pay.
However I did have to make a decision not to take Tamoxifen post breast cancer treatment as after six weeks the side effects just doubled my symptoms. One year on – so far so good. BTW the breast cancer diagnosis, surgery, support and treatment offered were a piece of cake to having CFS/Fibro. Even and the beginning I knew I had a good chance of beating it at my diagnosed earlyish stage and if not – well then it would kill me and the suffering would be over. I wish this illness was that clear.
Christine
Carol,
Thank you for putting in to words exactly how I feel. I am 58 years old now and have had cfs for 11 years. I have also tried everything possible out there and have bee to the top cfs doctors around.. I really can’t say that anything has really helped all that much. After spending thousands of dollars and feeling intense disappointment after each new treatment, doctor , healer, diet, supplement, etc… I have also decided to just “Be”.
And to Christine, I also survived breast cancer and the treatments and I agree completely with you. It was a breeze compared to cfs. At least you knew there was an end in sight. And fortunately mine was good.. I also refused the tamoxifen duentonthe side effects. My oncologist completely understood. 7 weeks of radiation and 3 surgeries was easier than having cfs!!!
I now try and just take it easy, not be too hard on myself and try to enjoy my new grandson.. I cry when I need to, missing my old life and accepting this life. I see a therapist where I can sort out my feelings , my regrets ,my envy , my wish for a do over, my disappointments…… All of you out there, we are not alone, my heart is with you all,
Barbara
Carol, I’m so glad you wrote about your frustration. I’m 65 and have been disabled with ME/CFS and FMS for years – will be 36 years on Feb. 13th, although I showed signs back in my childhood. I could write a book about the doctors, the treatments and all I’ve been through but will try not to! I think we need to know the difference between acceptance and giving up. Acceptance with a hopeful eye to the future is much healthier, I believe, than spending thousands of dollars on one thing after another, if none of them are working. I wasn’t even DX until the early to mid-90’s. I truly don’t remember the year. Like my friend, Nancy, who replied above, I also saw Dr. Lapp. Between his testing and Myra Preston’s QEEG, there was no doubt I have this stupid illness, but we tried numerous drugs and other treatments such as graded exercise and nothing really helped. Still, I’m grateful to Dr. Lapp for the DX and for trying to help. I also had a wonderful neurologist who tried a few things, such as Amantadine, but that caused severe myoclonus. I’m extremely sensitive to meds and many chemicals, both manmade and natural. A nearby skunk could flatten me as quickly as a whiff of the wrong perfume. Ditto for tea tree oil in shampoo, which turned me into a zombie at the beauty salon. Anyway, between all the doctors, I WAS able to improve the quality of my sleep. Although I still go to bed far too late, at least I sleep solidly through the night. Other than taking a few drugs and a handful of supplements, I had basically given up trying anything new many years ago. I had tried simple exercises. I went to 2 different PTs and often ended up coming home in the wheelchair, even if I had been able to walk in, and this was after TINY amounts of exercise. One PT cried and then we cried together and she told me I was obviously too ill at that time to benefit from exercise. Ditto for my next PT who convinced me that I should try to enjoy my time doing whatever I could actually do. I took that advice to heart and voila, within a year or two, my strength started to return. I hadn’t been lying in bed. On good days, I’d do a little baking or a little dusting, and then one day the mailbox looked a lot closer than it had, my balance was better and I felt stronger so I walked SLOWLY to that mailbox and although exhausted by the time I reached the house, I cried with joy, and the next day it was easier. Why was I finally able to walk that distance? Who knows? God knows I had tried before. I would ride my scooter down the bike path and when I reached a little bridge I often got up and pulled myself along the railing, stopping to enjoy the creek below, but could never gain any strength. Walking down our driveway to the mailbox on my own power was a huge feat in comparison. I had been stuck in a wheelchair for all outings and in the house I staggered, grabbing onto furniture and walls. A doctor who had always been kind made the very unkind remark one day that perhaps I didn’t WANT to get better, which hurt in a way I still feel today, because I had gone through so much to try and regain my health, so I even avoided all docs like the plague aside from getting my scripts filled. Other docs had been far more cruel – could write a book about them alone. (Your bra strap is too tight. You’re crazy. You’re a hypochondriac. You’ve obviously been abused. And some just sneered, or laughed or yelled.) Sometimes I think you just have to let go, take care of yourself the best you can and watch the birds, listen to music, watch TV if that’s your thing – just do whatever it takes to enjoy life in your new diminished capacity. Although I still have some very bad days, stuck in my chair, my good times are far better and I’ve even enjoyed a little EASY hiking, using 2 poles, and enjoy our trips and outings the best I can. I’m not ashamed to use my scooter or wheelchair. Little kids are jealous of my scooter Flash, I think, and for those adults who assume I’m just lazy since I look healthy, well, a big raspberry to them! One guy on the bike path who I’d encounter almost every day would inevitably tell me I was “cheating”. (Could have cheerfully pushed him over that bridge!) Now I can often push a cart from one end of a big box store to the other without dying and it seems downright miraculous! The FM pain eased after the first 2 horrific years, luckily. Why? I have no clue, but it wasn’t due to any particular treatment. Docs wouldn’t even prescribe anything strong enough and I was allergic to everything else. Now, my worst pain usually doesn’t hit until evening and luckily, I can tolerate a low dose of Vicodin, which I save for bedtime unless its a very bad pain day, and Xanax, also taken very sparingly, helps relieve the myoclonus a bit, although I couldn’t tolerate any of the other anti-seizure meds. I’d say do whatever feels best to you, Carol. If you’ve tried a particular drug for a year and it hasn’t helped, then I doubt it would ever help. If more treatments sound overwhelming, take a break temporarily or permanently. Doesn’t mean you’re giving up by any means! Best of luck! By the way, I ended up with a wonderful doctor, a GP, and she gives me a big hug at the end of our appointments so I know there ARE some very good, compassionate doctors in the world. I’ve had friends tell me, though, that I simply MUST come out West to see Dr. Peterson. Aye aye aye! Maybe 15 years ago I would have said yes!
Thank you again for sharing your story with us, Carol.
Your thoughts remind me of the story of the community of people in Florida who had one of the early CFS outbreaks. I saw some of them in a movie once where they were being interviewed. The elderly ladies said they had gradually gotten better over time.
Apparently back then they didn’t have any treatments to try, so they just gave it time.
Wasn’t there a study once that said that patients who did fewer medical interventions ended up feeling better in the long run? ….. or something like that?
I never saw a study like that.
My funds and personal support for seeking far away doctors ran out before this century started. So I keep up what helps from my visits to Dr. Cheney, and am on my own otherwise, no medical help at all for changing symptoms.
And I get worse, have less function, get more PENE from very little. Sleep is on its own rules altogether, despite years of trying ideas so I could at least sleep at the same time each day.
I wonder if the programs emanating from the knowledge of how PENE might work, would help me. I tried doing it on my own for several months (the movements hoping to get to actual walks outdoors), but gave up when a sister told me the heart rate watch beeping was not nice at a family party, how very supportive. I needed someone (preferring a doctor with knowledge) on my side, letting me know if setbacks like my rate of activities and continued lack of function, were a minor thing, and I should keep going, or adjust what I was doing. Instead I just stopped. It did not help that the heart rate monitor display unit lasted just two months before needing a jeweller to instal the new battery, or I buy a new one, accumulating those devices, or tossing them, for lack of a battery. I do not have the wherewithal to do an errand to a jeweller to replace a battery, way too low on the survival list of errands. I still have hope that might work, but I must have some in person feedback. Maybe I can try that when, in my perverse income stream, I turn 65 and have a bit more money than today. Should I spend it on a specialist, none of whom are in my area?
So I do not think that no treatments means getting better. This is not an illness to just go away. If it were, Cort would not be doing this blog, and many other obvious signs.
Sarah
Hi
I am 70 and spent years trying everything. Now I do what I can and then have a Shiraz, same effect as all the treatment and after two drinks I feel better. But I stop at 2 drinks. B
Since there seems to be a goodly number of us who are seniors with many years of ME/CFS illness, I wonder if there is any kind of database specifically about the subject of long years of being sick? What are the major symptoms after so many years, what other illnesses did we develop? It seems the collection and study of such information would be important.
Kathy
Kathy, a database like this would be extremely useful, not only to observe the progression of the illness over time, but so research efforts could be more focused on preventing the other illnesses we “long timers” have gone on to develop. I was diagnosed with breast cancer (estrogen related) last year, and osteoporosis last month (thyroid/parathyroid related?), and can’t help but wonder how much of a role the ME/CFS played in hormone disruption. I’m doing fine, thank you, but it does seem like that information should be valuable for a database.
Carol, Thanks for sharing!
Thirteen years into the battle I find that I, too, get frustrated at times and will stop taking whatever I safely can… and will feel some better — for a short time. Then I relapse and pick up the regimen again and slowly feel some better tho never returning to ‘normal’. I can’t figure any rhyme nor reason to it. Maybe that’s why the Imunovir protocol calls for taking one month off every six.
What I CAN tell you is that I have been on both Imunovir and Famvir since late 2010 (along with Dr. Rey’s recommended supplements) and it wasn’t until this last visit that my labs started showing appreciable improvement. After over three years on the meds, I had almost given up on seeing any improvement. Dr. Rey told me they’re finding that the longer one has been sick, the longer it takes on the meds/supplements before seeing improvement. She says that after the immune labs start improving most patients start feeling some better, too. Now I am interest to see how long it takes for me to feel improvements, if any. And, if so, how much? Each little bit I occasionally gain from trying different things through the years, tho never a cure, improves my quality of life and I personally feel that’s worth trying for when it’s within my means.
So, my point is, when you next have a relapse and are wondering whether to give it a try again, you might want to consider that, for those of us who have been sick longer, it may take waiting much longer than we are used to before seeing positive results. Whether it’s worth it or not for you to wait that long is up to you.
Wishing you all the best!
D.Ann
This was from Dee
“robert, what do you take for neurotransmitter stimulants and cellular stimulants?
i KNOW it damaged my brain since i can FEEL this terribly in my head and i am no longer the person i once was and so scared as to the damage! VERY scared!!!”
This list may appear daunting at first but it is not so difficult once you become familiar with the routine. It is important to read about these substances with your individual situation in mind.
These are available at your well stocked local health food store, or online vendors.
Multi Vitamin/Mineral supplement
Fish Oil
Vitamin B 12
Vitamin C
(the following mainly for neurological support)
Choline & Inositol
Acetyl L Carnitine
L-Lysine
CoQ10
L-Methionine
L-Tyrosine
L-Phenylalanine
(these mainly cellular support)
L-Carnosine
Phosphatidyl serine
(energy aid)
Rhodiola rosea
(anti-inflammatory)
Boswellia
I neglected to put probiotics on the list. The gut seems to be involved. I get positive results from probiotics.
Robert – would you mind sharing the doses you take. I am on many of these but would be interested on what doses you take.
My sincere apology for taking so long to respond to those asking what the quantities of the substances I am taking are.
Here is the list:
Multi Vitamin/Mineral supplement Solgar VM 75 1xd
Potassium/Magnesium/Taurine 99 300 100 1xd
Cal/Mag/Phosphorus/Vit D 1000 500 500400 1xd
Fish Oil EPA 800 DHA 500 2xd
Vitamin B 12/Folate 5000 800 1xd
Vitamin C 1500 1xd
Choline & Inositol 250 250 1xd
Acetyl L Carnitine 500 1xd
L-Lysine 500 2xd
CoQ10 200 2xd
L-Carnosine 500 3xd
Phosphatidyl serine 200 3xd
L-Methionine 500 2xd
L-Tyrosine 500 2xd
L-Phenylalanine 500 2xd
Rhodiola rosea 500 2xd
Boswellia 300 2xd
Probiotic Florastor 1xd
Probiotic multiorganism 1xd
DHEA 25 1xd
Oregano Oil 181 2xd
Lauricidin 3000 2xd
My sincere apology for taking so long to respond to those asking what the quantities of the substances I am taking are.
Here is the list:
Multi Vitamin/Mineral supplement Solgar VM 75 1xd
Potassium/Magnesium/Taurine 99 300 100 1xd
Cal/Mag/Phosphorus/Vit D 1000 500 500 400 1xd
Fish Oil EPA 800 DHA 500 2xd
Vitamin B 12/Folate 5000 800 1xd
Vitamin C 1500 1xd
Choline & Inositol 250 250 1xd
Acetyl L Carnitine 500 1xd
L-Lysine 500 2xd
CoQ10 200 2xd
L-Carnosine 500 3xd
Phosphatidyl serine 200 3xd
L-Methionine 500 2xd
L-Tyrosine 500 2xd
L-Phenylalanine 500 2xd
Rhodiola rosea 500 2xd
Boswellia 300 2xd
Probiotic Florastor 1xd
Probiotic multiorganism 1xd
DHEA 25 1xd
Oregano Oil 181 2xd
Lauricidin 3000 2xd
I HAVE SO MANY OF THOSE WONDERFUL PRODUCTS AVAILABE THRU MY ESSENTIAL OIL COMPANY–I JUST DON’T HAVE THE MONEY EVERY MONTH! I TAKE WHAT I CAN WITH THE SMALL AMT I CAN ALLOT. NOTHING I’VE TAKEN EVER GIVES ME SUCCESS. SO I MANAGE THE BAD DAYS & RELISH THE GOOD ONES–WHICH ARE TOO FEW & TOO FAR BETWEEN, OF COURSE!!
I am almost 59 years old and have had FM/CFS for 26 years. So, a little younger than you, Carol, but I understand your post perfectly. I just wanted to say thank you to all who posted, and esp. To Cort, who does such an amazing job under such difficult circumstances. I have read through every post and there was such resonance with each one, such a vibration of the internal strength that it takes to get through even one day with this crap, and most of us have gotten through many, many years of it.
I do not care about how long I live, but I really care about the quality of life I have. I believe that is the decision that all of us has to make.
It is just so great to have this community because I know I am not alone.
This comment from Robert got stuck in another part of the website
Hi Carol,
In December I turned 71. It was also the anniversary of a CFS attack that put me in the hospital three times during the year. In that relatively short time I have become familiar with the lack of coherent approach to the disease – from diagnosis to treatment.
Insurance incompatibility prevented me from seeing the recommended CFS specialist in my part of Florida, and Klimas was not taking new patients.
Adept at research, I started reading. The conclusion that I arrived at was that I have an inflammatory neurological disease. Neither I, nor it seems anyone else, knows much about the cause of the ailment. I do however, know intimately, at least some of the effects. So I started there.
To combat fatigue I take non prescription cellular stimulants and neurotransmitter stimulants. For inflammation, herbal anti inflammatories, and fish oil.
This protocol is allowing me to work and socialize. I am not cured. My usually vigorous physical activity is on hold. I am concerned that my neurological system is being damaged by the illness. But, at least I can participate fairly well in life.
Until there is some fairly clear treatment path I shall heed the words of Seneca the elder “If a man does not know to what port he is steering, no wind is favourable to him.” Hopefully, research will soon provide some navigation aides.
Hang in there,
Robert
Like Dee, I’m also curious as to what you meant by non prescription cellular and neurotransmitter stimulants, Robert. I’m afraid to try any kind of stimulant for fear it would cause the myoclonus to worsen.
As for debate about whether to continue a treatment or not, I think it depends upon just how severe the side effects from the drugs are. If its worse than the disease itself and you’re already a senior and know you’ll be in misery for perhaps years, you have to decide for yourself whether or not this is worthwhile during your…cough, choke….”golden” years. Its a tricky dilemma.
I have had chronic fatigue syndrome for so long now that I have given up on ever getting better. I don’t even remember what it’s like to feel well. For most of my life, I never seemed to have the energy everyone else had, but I could push myself without getting worse until I hit my 30s and 40s.
Truthfully, I feel that I have never been able to “live”, and at 51, I’m barely able to get to the toilet, much less bathe, brush my teeth or do any other normal activities of daily living. For years, and still today, I plan to do things, to take trips, to have fun, to “live” my life.
But I’m never able to do any of these things. My body long ago turned on me. I wish euthanasia for people who will never get well existed because I would choose it. Are we terminal? No. We won’t die from this, but since I keep getting worse, I can’t imagine how I will even get out of bed at 60, 70 and 80.
Since no one in the health “care” industry seems to care about CFS, I don’t see there being any treatment or cure any time soon. Maybe in a few hundred years.
I’m also approaching 70 but I am still looking for things that help. I came down with ME the first time after getting Mono. I was bedridden for almost 2 years. I slowly recovered with treatment for yeast and with B12 injections .After a few years, I was able to work for 12 years as a nurse in a hospital and did a lot of overtime. Then due to stress – stress is the big killer for me – relapsed into Fibro and ME again. Again being bedridden. Now it’s been over 10 years and I’m still trying to pull out of it again. I’m on most of the things that Robert mentioned. What has helped me the most is the Methylation protocol, supplements, diet and Famvir. I’m not well but I can do most of the things I need to do to take care of myself and can actually take short walks. I’m not ready to give up yet. I keep reading and researching and finding with the help of others, more things that help. As a friend used to write “I’m not dead yet” letters at Christmas, I’m still going and have a lot more adventures I want to try. I plan to go camping by my self this summer and may do a road trip. It’s too soon to quit for me.
Stefie
Good luck Stefie, I’m on a road trip myself.
Kathy, I’m so very sorry you have such a severe case. I want to kick myself for ever complaining when I read of those of you who are so horribly ill. Last night my pain level was really bad and I’m extremely weak this morning, going back to bed for a nap soon, but I’m still able to get out of the house now and then as long as I don’t have to drive – supposed to meet relatives tonight, in fact. Sometimes I can go to these dinners, sometimes not.
Do you have a friend or family member who could help you into a car and just take you for a drive? My husband made a nest of pillows for me once during a very bad time and took me out for a drive. We sat along a street and listened to a band concert and it was just what I needed, to see that the outside world still existed, even if I couldn’t get out of the van. Of course, not too many band concerts this time of year, but you see what I mean. Maybe have someone drive you to a pretty park or something when the weather is decent and just take in the view? The ducks and geese don’t care if you haven’t brushed your teeth.
Wish I had magical powers and could help in some way. Don’t give up, though. I improved without major meds because I can only tolerate a handful, and still I FINALLY improved, after many years. We’re taking a BIG road trip West this spring and I know there will be days I’ll question the sanity of that, but I’m the eternal optimist and assume I’ll enjoy what I can.
My new GP has a great sense of humor and finally realized just how sensitive I am to meds. We had tried 2 different drugs for diabetes. The first almost sent me to the ER and the 2nd one wasn’t much better so she finally realized that pills aren’t a good idea for me and I’m dealing with it through diet, and thankfully, quite successfully now. Anyway, I’ll get to the point. She said that when she was in med school she had to read a book called “Try Not to Kill Too Many Patients”. She said, if I continue like this, one day I’m going to give you a pill and you’ll just die. It took her awhile to understand that, but she’s so funny we couldn’t help but laugh together. She’s so open and candid that she’s just a breath of fresh air. I CAN take some supplements such as CoQ10, fish oil, D3 and cal/mag with zinc, which helps me sleep, so its not as if I’ve given up, but I’m just being realistic. More power to those of you who can tolerate new drugs. Thanks Cort, for your wonderful, blog.
Thank you for your honest, reflective article, Carol. I identified with you…and it is so helpful to have my thoughts affirmed. I am having brain fog today…but I wanted to respond while your writing is on my heart. I wasn’t able to read all the comments, so don’t know if another has written along the same lines.
I realize you know, through your kind comments on my posts here, that I am in the midst of treatment with Dr. Chia…which I am grateful for and intend to follow-through with at least for the roughly (no pun intended!) two years he indicated it would take to know if his treatments are effective for me. I am about half-way there. (My blog should be posted here this week)
I am 61 and have had ME/CFS 20+ years. Dr. Chia is the first expert and only doctor I have had that understands this illness and seeks to treat possible causes. But when I first went to him it was not with great hope of a cure. I am realistic enough to know that this is unlikely at this stage of ME/CFS available treatments. My hope was to finally have a doctor that understands the disease and that if my tests showed enteroviruses, his protocol could help control the illness better and provide an improved quality of life. This is yet to be seen, but I have had some periods of improvement since I began with him….my “Algernon” (“Awakenings”) days.
While I am plugging along with the ups and downs of treatment trial and error, ever grateful to have Dr. Chia in my corner, I have come to some of the conclusions you have.
It seems evident that there will be no definitive cause and cure for ME/CFS in my lifetime. Perhaps this is defeatist, but given how long it takes for research to be funded and get through all the government red tape…insurance companies being willing to pay for needed treatments…not to mention the mess of the “Affordable” Health Care Act and the impossibility of chronic health sufferers of KNOWN diseases and treatments to get the medicines they need with all the new restrictions…it seems realistic to me.
So I have pretty much decided that when I have exhausted the options with Dr. Chia, I will stay with the medicines that have helped, continue to weigh my activities and eating based on what helps me and which responsibilities and enjoyments are worth the cost of their probable ill effects, while accepting that this is what it is. I have found there is a great deal of peace in acceptance. The hard part is knowing what we need to accept and when we need to continue to fight. I may be facing that decision if Dr. Chia asks me to take part in a future clinical trial. But at this moment, given that I will be in my mid-sixties when I complete his current treatment possibilities, I don’t believe I will get into that fight. I will know that if and when that possibility is before me.
Thank you again for being willing to write what may be looked at by some in our ME/CFS world as quitting. Making a choice to live with an illness on your own terms isn’t quitting…it is wise and it is freeing. I am grateful you shared it.
We press on…each on our individual paths through this illness…with the help of our community of fellow sufferers….and with hope that what is visible isn’t all there is.
Christine
“Above all, do no harm”…..that is the oath that doctors are supposed to follow and the one that I have used to guide my own treatment of ME/CFS. I am 72 years old and have been sick with ME/CFS for many years. It took me most of those years to learn to get off the roller coaster of push too much and relapse again and again. Since that awareness dawned, and upon seeing Dr. Enlander in NYC and taking his supplements, I no longer experience relapses which was the worst of my symptoms including meningitis and encephalitis symptoms. I have other symptoms of HPA axis dysfunction such as adrenal insufficiency and hypothyroidism along with POTS. My life is limited but in many ways I have come to accept the limitations and enjoy my life within them. My mother used to say, “where there is life there is hope” I have hope! I live in the present moment not longing for the past or anticipating the future. Today, all is well.
Everything I read here resonated deep in my heart; I became sick at 25; I am now 46. For the first 5 years I was as feverishly pro-active as anyone. Feeling like life will not really start again until YOU FIND THE CURE; it is a frantic, agitated state to be in –there is no peace in it, anywhere. Yes, hope is an essential ingredient for living, but “Hope deferred maketh the heart sick,” and who can endure being perpetually sick at heart? Despair kills, too. I still live life with a great deal of hope –but it is hope for other things than (just) a cure for this illness that struck me down 21 years ago.
If I say, “I MUST be well to be a legitimate person; I must be cured to enjoy this life,” I will not enjoy much peace during the 24-hour stretch of living I have before me NOW.
If I say, “for now, this (CFS) is me, and I accept the fact that my situation makes me different from others,” (and hey, why not embrace the difference a little bit, i.e. I have become much more compassionate to the needy and suffering and misunderstood than I EVER would have otherwise) I will start to look at the feeling-better times as an unexpected gift, instead of simply something that is my rightful due. It is okay if the well feeling does not last; it’s not my fault. It is not my job to make it last. It is not my job to be Lord of all.
It is not giving up. Really, to me, it is a kind of humility –a good thing, by the way. I am a Christian, a born-again believer in Jesus Christ, and CFS is what HE has allowed in my life. It is not what I would have chosen. I hope for a healing. But for now I have peace. Peace is a beautiful thing.
There is a group on Facebook now called #MEAction Seniors Connect that you can join.