As this catastrophic pandemic of infection by COVID-19 pulses through our daily world there may be a break thru brewing for us long lasting ME/CFS sufferers. One of the most prominent public health expert Dr. Fauci has stated that in some COVID-19 cases the suffers did not get better but developed the symptoms that of ME/CFS. As a result the scientific community is beginning to join in to do more research on this cause and effect and more money will go into ME/CFS research. As our hope of finding a cure for ME/CFS rises, we continue to think and pray for the many who suffer from and have died of COVID-19.
man is crying on his knees because he has run out of energy
From the moment I got ME/CFS I have been met with chronic sense of failure. Failure at not being able to complete my daily tasks of living…failure at not being able to meet my social obligations…failure at not being able to meet my professional obligations….failure at not being able to meet my physical activities plans. I would start going through a day and then just crash into the wall stop what I was doing and get into bed. I would want to maintain relationships which I needed only to run out of energy right before the event forcing me to cancel it, I would try to work just to get through the day and not be able to finish the day having to cancel my appointments until a day came when i had to leave my job all together. I often felt like the more ill I became the further I was losing my world as I new it. I was a victim and this illness was happening to me. I felt this way for a long time. But very, very slowly through constant meditation, practice of gratefulness, and working to be in the moment (all described in previous posts) I realized there was no past, no future just today. This moment. Once I started counting moments rather than looking at my illness as one long sentence, I began to appreciate the sun coming up in the morning; the opportunity to meditate, the incredible feeling of being able to walk out of my apartment and in time to go outside, to listen to the birds, feeling the sunlight on my face, feeling my body move and many other small miracles that came out of each day. I began to count my successes. I have succeeded in taking a bath today, I have succeeded in exchanging a text with a friend, I succeeded in standing out and feeling the sun on my head. I even succeeded in studying for my licensing exam for 10 minutes. Once I started to count my success rather than my failures I felt like I had some control over my life. I stopped being the victim of the doctors and waiting on having them come up with treatments I felt that I was the orchestrator of my own health. I suddenly, saw myself find the energy to read books on ME/CFS and researching the causes and most importantly potential treatments. I was no longer someone who wasted my precious energy in feeling like a victim trying to figure out who to blame for my illness. I was the one in the driver seat taking miniscule steps towards finding new roads to health. Not to take what I am saying above too lightly I understand. how difficult this turnaround can be. It took me about 4 years to come upon this realization. Hang in there everyone there is hope that this change in attitude will come to you too if it has not come to you already.
In all my reading and research and working with mentors that are ME/CFS specialists I am realizing that today’s medicine, the western orthodox kind, has grown to be very limited and refuses to acknowledge that the body especially to be able to treat complex diseases (diseases that fall in between the cracks) needs to be viewed through the inter-workings of systems in the body not just the treatment of symptoms. ME/CFS is that illness. The one that is complex, falls in between the cracks of “normal medicine”. It is ME/CFS that keeps us going from one specialist to the next only to be faced with confused or bored faces of doctors that don’t know how to treatment what we have or merely just don’t care to know. We need to insist and visit doctors that have open minds to incorporate the functional medicine (study of systems in the body and how they interact).
I spoke before how I came across Dr. Jacob Teiltelbaum in reading one of his books and began taking his supplements and vitamins on a regular basis from which I hav\
e felt some improvement. Motivated to continue on this way of treating ME/CFS I went to see a doctor who studied with Dr. Teitelbaum, Dr. Dean Mitchell at the Mitchell Clinic in Manhattan. There I received a new treatment which built on the supplements and vitamins I was already taking. Dr. Mitchell started me on 9 IV’s of vitamin treatment over 11 weeks. The IV’s included essential vitamins and minerals like magnesium, calcium, Vitamin C, Vitamin B12, thiamin, riboflavin, niacinamide, B5, L-Carnitine, Nicotinamide Adenine Dinucleotide (NADH), Glutathione, Sodium Bicarb and Lidocaine. All of the above were targeted at specific systems that may be malfunctioning to cause us to have ME/CFS. These systems include the immune system and digestive system. I was also injected with immune globulin infections which can be used to treat bacteria and viral infections that do not respond to other therapies. Finally, and most challenging of all Dr. Mitchell also had me follow the Candida Free diet (one of the most difficult diets to follow and given candida free drops to take daily.)
I am currently on week 7 of my treatment and feel slightly better.
I find these treatments very challenging. I never know whether I am really unto something in all my research or just chasing a pipe dream. Will the tons of time, energy and money spent on each the research pay off and help me or will the treatment hurt me. It seems like with each treatment there are stories about people who have done a portion and all of the treatment and recovered right away. I am not one of those people, at best my energy improves by several percentage points at worst I fall into another awful day. But the hope of finding a way to heal provides me with the motivation to carry on and begin exploring yet another form of treatment until hopefully one day I will have the energy I need to get back to working and playing and enjoying my life to the fullest. I always work hard to believe that I need to take things into my own hands and it is up to me to find the treatment or treatments and not to wait for a doctor to show up and give me the treatment that will heal me. In some ways I feel empowered by this but then there are those bad days. On these days I hide under my pillows and lie in bed with headaches and other symptoms hoping that I will find the energy to rise and explore my next treatment.
Disclaimer: Please note that the opinions, treatments, and doctors that I list above worked for me. Please consult with your doctor before you follow any of the above.
I am as familiar with anger as with anxiety and fear. I have felt furious at having acquired this illness and how it has taken over me life. Angry at going from doctor to doctor and not having them know what ME/CFS. Angry at the blank faces that I see when I say I have ME/CFS to friends and family. Angry at people who don’t believe me. Angry because there are hardly any well proven treatments and there is no cure for this illness.
Recently, our usual feelings of anger have been compound COVID-19. Angry at being shut into our apartments not because of illness but because the government says so. Angry as we wonder why this COVID -19 pandemic; and how the global community has to deal with it. Angry that the federal government rather than helping us fight the COVID -19 has been obstructive in insisting we take medication which has not been proven to be effective and not FDA approved; angry at the lack of involvement of the federal government and president not offering a plan to follow or any sort of realistic guide lines.
Angry because another black man has been killed by the police. Angry at the police brutality found on a daily basis (although we do not hear about it) toward the black people.
Be thankful for the struggles you go through. They make you stronger, wiser, and humble. Don’t let them break you let them make you.
I find my level or fear and anxiety increases as crisis after crisis loom over our heads. What can be worse than losing the life as we know it?
First, was the viral infection that caused me to get ME/CFS taking me from a very active life and forcing me to be bed bound.
Secondly, came the COVID-19 pandemic, spreading throughout the US. We grew increasingly frightened when we found this COVID-19 virus to be a serious infection spreading through multiple-organs. We are frightened because we know that our illness makes us more vulnerable to being infected by the virus and multiplying our chances of being infected and generating more serious symptoms than a healthy person. We are also worried about our financial health given the shrinking economy.
Thirdly, my dear friend contracted COVID -19 and died from it.
Forthly, the brutal murder of George Floyd has sparked peaceful protests in cities throughout the US. Our levels of anxiety increased further when looters, white supremacist, and other trouble makers interspersed them selve is the crowds conducting peaceful generations in hopes of disrupting the demonstrations.
Fifthly, is our presidents abuse of our constitution by bringing in the military in an effort to use them to “protect against thugs”. You see the president has grouped the peaceful demonstrators with those that want to disrupt the demonstration and grouped them all as thugs and as enemies. He then brought in the military to help us fight against the “enemy”.
THE REAL ENEMY
“The real enemy of man is not man. The real enemy is our ignorance, discrimination, fear, craving, and violence.
by THICH NHAT HANH
These crisis have thrown healthy people of balance into a state of confusion. Imagine suffering from ME/CFS on top of this.
Woman with suitcase walking to an unknown destination looking for herself
My life before I got ME/CFS was very active. Running around a mile a minute, I took no breaks, and I push to move as quickly as I good juggling many balls. After I grew ill, I crashed into a wall and was no longer able to live the life which I had before. It was time to learn to live differently, but to still live a full life. I believe that life is ready to teach the lessons which you need to most. I just had to slow down and listen. Lying on my back for two years and counting I have had time for nothing but listening. Life was telling me to change the very foundation on which I built myself. It was teaching me to appreciate the energy which I do have and learn to work efficiently with this energy, to become more patient, to learn to slow down, learn to pace myself, and many other lessons. It continues to be a challenge to let me self go and allow the changes to happen.
The only way to find your true self is by recklessness and freedom. True self is never a fixed thing. True self is always in motion, like music. A river of life. Changing, moving, failing, suffering, learning, shining. That is why you must freely and recklessly make new mistakes. Make new mistakes and not fret about them.
Most recently, I have been struggling more than usual with my illness. I find myself growing inpatient and wondering if I can re-enter the world with everyone else after the shelter in place is lifted. I worry about being left behind once again in my isolation even after everyone returns to their active lives. I am on my third treatment option with much money spent for little improvement. It really feels like the struggle of my life to get back to health. As the picture shows, trying to push a very large stone up a hill. I strive to stay positive because that is essential for my recovery, I am tired of my microbiome diet. I hope my microbiome has healed after all this work on switching to a microbio diet. I go through the food I have in the pantry and everything contains sugar, soy, gluten etc. What am I going to do with all this food that I can not eat anymore. Everyday when I awake it takes me a few seconds to realize that I am ill and the blanket of the illness fauls on me. I have been continuing to work with mindfulness trying to be with the here and now. I have been meditating every morning with the community on zoom. I have been on this microbiome diet where one can not eat sugar, gluten, no fruit juices, nothing with Splenda in some ways has the same impact on my body as sugar, not processed foods or packaged foods and about 5 more things I can not eat. I don’t think I can eat one more fermented vegetables. I am taking the supplements but my body does not seem to be accepting them well. I am exercising by walking as much as I can but seem to over do it most of the time. The pacing is important and am working on it but not there yet. Apparently, I am doing all the right things but it is taking too long. I am getting tired of it all. I won’t stop because life is precious so I have nowhere to go forward just having a tough time keeping it all up. It is all so complex. I dream of renting a cottage on a horse farm which has a gorgeous view on all sides … and just get lost with taking care of the animals and learning about horses as my energy levels allow. I am trying to keep my spirits up but sometimes I step into wholes and can’t seem to get out of them. I just simply can’t. So I stay with can’t until I can again.
I have been through B12 treatment which helped a little and valtrex treatment which did not work . I am in the process of seeing whether being treated with disulfram drug is a good fit. My ME/CFS doctor recommended it. I went to a lyme disease specialist (not sure why but I trust my ME/CFS doctor. The specialist said that disulfram was not right for me. He took some more tests and he and my ME/CFS doctor will talk to see whether I will get the treatment with disulfram or not.
In the meantime as I was reading through more and more ME/CFS books scientific articles and clinical trials I came across several books that started to talk about another form of medicine, functional/integrative medicine. These books were written by ME/CFS clients whose energy level improved. Not up to 100% but maybe 70%. I will take that anytime given that I am currently swinging between having 30% and 40% of my pre-ME/CFS energy.
The type of treatment they referred to looked at various systems (i.e.,there are 11 systems in the body but only 5 or so pertain to ME/CFS) how they work in our body. ME/CFS is a process wherein multiple systems are interacting in a negative causing these systems to become dysfunctional. For example, when looking at energy flow in the body. There is one part of energy flow that involves the workings of the energy batteries in cells called mitochondria. In a healthy individual the ATP changes to ADP and release regular energy. In individuals with chronic fatigue (ME/CFS) the energy never goes up to ATD but stays down at APD levels causing the mitochondria stop working and making this cycle dysfunctional. Or the system involving the microbiome. We each have system in our bodies that includes the gut and the level of positive and negative microbiomes in the gut. Microbiomes are a community of microorganisms (such as bacteria, fungi, and viruses) that inhabit a particular environment and especially the collection of microorganisms living in or on the human gut. Apparently there are negative and positive microbiomes and it is necessary for good health and energy flow for there to be more positive microbiomes than negative microbiomes. If there are more negative microbiomes than more positive a condition called “leaky gut”. In which negative microbiomes leak out of the gut and cause havoc with the body and negatively impact multiple organs. This working with systems in the body and focus on the biome made sense to me. I also had this urge to supplement the treatments my doctor came up with. I had the education to do so (just not always the energy. Slowly as I read about the above I came across a book that brought it all together written by a doctor. Dr. Teiltelbaum has had ME/CFS and was able to ultimately join life again. Which meant not to return to my pre ME/CFS life for that was not possible but to live by actively managing my life which include being as efficient as possible with the energy I had, forgiving myself for getting ill and losing energy in the first place, accepting reality, and focusing on this new form of treatment. So I bought the supplements and vitamins that Dr. Teitelbaum prescribed and looked for a good clinic to test my systems and see what was malfunctioning. I found a clinic in Manhattan (where I live) run by a husband and wife team who studied under Dr. Teitelbaum and made an appointment to go to the clinic. Here I go again another treatment but feeling like this one may help me get back more and more of the energy which I lost.
Within the cycle of my ME/CFS, I can get into a “funk” an existential crisis. During these times my thinking process begins to spin out of control with negative thoughts such as: I will never get better, I will never be able to get back to my profession, I am will never be strong enough to live my life. I will be disabled for the rest of my life and never accomplish what I have set out to accomplish. Spinning downward into a place of self – doubt and not trusting life. I was having several of these days in a row when I came across a “Practice of Gratitude Chant” during my daily Zen sitting. I recited the chant along with everyone in the zendo and the negative thoughts that I have been obsessed by these past several days started to shift into a more positive way of thinking. This was very important because staying positive is a major factor of healing from ME/CFS. The chant goes like this:
With gratitude I remember the people, animals, plants, insects, creatures of the sky and sea, air and water, fire and earth, all whose joyful exertion blesses my life every day.
With gratitude I remember the care and labor of a thousand generations of elders and ancestors who came before me.
I offer my gratitude for the safety and well-being I have been given.
I offer my gratitude for the blessing of this earth I have been given.
I offer my gratitude for the measure of health I have been given.
I offer my gratitude for the family and friends I have been given.
I offer my gratitude for the community I have been given.
I offer my gratitude for the teachings and lessons I have been given.
I offer my gratitude for the life I have been given.
As I looked through the posts in ME/CFS for ideas to help me as well as posts that I could respond to to help someone else from my 4 year experience of having this illness I read one particular post that crossed my mind. A fellow with ME/CFS wrote in to say he had just slept for two straight days and woke up disoriented and with his body in pain. I slowly realized how important it was to have a structure to each day. In our case it is not that days calendar filled up with appointments and meetings to fill our active lifestyle since that is no longer our reality but even if you are very ill a structure is helpful. I helps you to stay in your life day by day and gives you a sense of achieving tasks. In the example of the above fellow it may be helpful to him to set as many alarms as he can to get up every morning. One task is accomplished. Figure out what day it is so you are oriented and in tune with the society outside. Even though you list of tasks have changed from doing your professional job to being sick you still have to stay oriented as to the day, conducting your activities of daily living like brushing your teeth or taking shower (as many of these tasks that your body allows). On those really awful crash days it is still important to get up on time, figure out the day (even if you go to sleep right after). The other most important task is to stand up and move your joints around, take deep breaths, and stretch a little. This little bit of exercise will prevent your joints from freezing up and hence not causing pain and lets the organs in your body know that you are still alive.
A journey through a mysterious chronic illness (Myalgic Encephalomyelitis) (CFS/ME) 