the treatment: using treatment offered by orthodox/western medicine and alternative medicine

Ok, let’s talk treatment of ME/CFS. There is very little out there with regards to treatment using Western Medicine where you pin point and test one organ at a time. How awful and frustrating. I look at my doctor who gives me the ‘reality is just reality look’. He is apologetic. He does say that he can give me stuff that may help with the pain, depression, anxiety, nausea, vomiting, migraine headaches. I can even get adderall that gets me through the day on the good days. So I go and see my Western medicine ME/CFS doctor regularly to get my monthly blood test, and B12 shot, and meds for whatever symptom I may be having at the time. The three attempts at potential treatments included regular B12 shots and valtrex. Third potential treatment was considered just the other day and after seeing another specialist and taking tests it was decided that this course of treatment was not for me. Now can I shout, scream and holler? I certainly can but am afraid that it would not help me find a treatment. So I just sit in a chair to rest before heading back home and all that is left for me to do is to continue to go back to the database of treatments and research medical and scientific articles to find a new treatment for ME/CFS run it by my doctor to see if it is a good fit for me and if it is to try it – not sure if it will helps or what side-effects it will bring. It is a hit or miss sort of thing. So far I have missed every time.

I had tried to use some alternative medicine treatments such as yoga, meditation, acupuncture, massage, and reiki but found that while they made me feel good for a moment or two non of the treatments provided me with long-term success. Besides I was too tired to go to and from the treatments and too poor to afford them.

how to pace myself has been the most difficult lesson of my life.

Prior to getting ill I lived my life all out and pushing past the tolerance of my body on a regular basis. I worked 11 to 12 hours a day in a very emotionally charged job as a therapist in the poorest parts of New York City dealing with children that were being abused thru adults experiencing suicidal or homicidal tendencies. My body was crying out for help. I stopped all the ways that I use to take care for myself (i.e. meditation retreats and meditation, running and other forms of stress). I use to use the “too much work will not kill” and “push through the pain” as credo’s for my life. But those proved to be false. I ran myself until I slumped over a step and could not move anymore. I compromised my immune system leaving myself open to an illness and then one came along ME/CFS. I am not saying vulnerable to getting ME/CFS.

Pacing has been the greatest lesson that I am learning as I grow through this illness ME/CFS. Pacing is defined working within the mind and body up until it can no longer tolerate thay activity. I is practice of listening (and being in touch with your body and mind every message they give us. This attuness in your body is pacing. Why is pacing important in managing ME/CFS. In ME/CFS we are dependent on pacing of mood for every action. For example, I decide to move from the bed to the television. I am feeling ok at which point you can move on to the next step or am I breathing very heavily and my muscle are hurting. The breathing heavily and pain is your body/mind telling you that you have reached your own personal limit and need to go to bed. Pacing is key to managing ME/CFS because if one over does it — it can backfire and cause a major regression in you. attempts to working with this illness.

I find even after 4 years of illness I still fight to determine what my body/mind can tolerate and what it can not. I go out of a walk. I am walking along and get to the point where I am out of breathe and feel pain. The question to ask is do I just need a break and I can continue or is this my body telling me to stop the activity (any activity no matter how small. When I walked I had to always remember the way back as part of the walk. I forgot this a number of times and left myself stranded. In my experience pacing is not something you learn to do and then you are done. It is a practice of continually being in touch with every part of your body/mind and continually following the signals of you body/mind recognizing them and applying them to your every movement in your life.

living with ME/CFS during the time of COVID-19 … my dear friend passed away…

I found out from one day to the next that my dear friend, Judy, died of COV-ID 19. She lived next door. I have known Judy for 30 years and she was a dear friend who lived next door. We visited each other constantly and once I got ill a felt safe in having her right next door incase something went wrong. She was one of those rare people who had compassion and an ease being with people. She knew how to listen and be with people in a very special way. People remembered her and loved her. I was unable to say goodbye. My illness prevented me from saying goodbye in person. I was unable to go to say goodbye at the hospital and the grave site. Fortunately we had a virtual shiva in which I could participate with others that new her. With COVID -19 I felt more in the mainstream of having everyone share the isolation that shelter in place gave us and the possibility of a virtual shiva which I would have missed if it were not for COVID-19. I feel so deeply conflicted. In one way I felt more in the mainstream of life now that we were sheltered in place, while so many people were growing ill and dying. I know shared my feeling of isolation and helplessness with everyone else.

Our lives are like waves on the ocean of this one luminous Mind. Each wave on the ocean has a certain shape. A trajectory. Unique characteristics. It lasts for a time and then crashes down onto the beach and passes away. And, at the same time, it goes nowhere because it was never anything other than the ocean and the ocean is not in any way diminished by this wave returning to itself. So it is with our everyday lives and our true nature …this vast still Mind from which arise all of the circumstances and experiences of our lives. Because of the ceaseless action of cause and effect, reality appears in all its many forms.
To know this liberates all those who suffer.
All beings appear from One, and pass away, after a few flickering moment or years of life,
back to One.
Truly our lives are, indeed, waves on the vast ocean of True Nature,
which is not born and does not pass away.

These are a few phrases on living and dying offered to us for Judy’s memorial by Roshi Janet Abels, a teacher at the Still Mind Zendo. They are also very appropriate for those dying of COVID – 19.

living with ME/CFS during the time of COVID – 19: the challenges

As the coronavirus infections continue and the number of deaths rise I sense an increase in my ME/CFS symptoms especially the increase in fatigue and as everyone else depression and anxiety. My body is much less able to cope than before so I lay in bed more and more as COVID-19 progresses.

This pan epidemic is really rough to handle together with my ME/CFS. Not only do I feel more vulnerable in healing from the virus, but feel less able to take care of things I need to do to protect myself. For example, two days ago our door fell of the hinges. Because we live in a pre-war building the door is from the 1920’s and very heavy. It has been painted over numerous times and was a bit difficult to close. Well it chose to become unhinged during COVID -19. Naomi and I live in a small apartment which we divided giving Naomi the living room and me the bedroom as private space during the day. With the door broken, I suddenly had no privacy from sound or sight which the door provided. I felt as though my little private spot was invaded. I could not call anyone to fix it due to social distancing and was not strong enough to repair it. What made it worse was that in the past when I had been healthy I would of been able to repair the door myself. Now I lay helpless while the door will be broken until after COVID-19. Such relatively small thing but going through ME/CFS on top of COVID -19 and I felt totally helpless.

I was feeling increasingly tired and anxious and wondered why it was more intense than I experienced before. As I lay in bed I realized why. It was because I have lived through something somewhat similar to COVID 19 invasion before. When I was 7 years old the Russian armies (the enemy) came to take over my home country Slovakia. The world as I knew it ended. I heard jets overhead and tanks rolling into our city Bratislava. People stopped working and just stayed shut in at home hoping that a sense of normalcy would come again. Grant it this is a silent invisible enemy but it certainly felt the same.

As the fear and anxiety of the past traumas merged into today’s feelings it intensified my current feelings and pains in my body. I was moving backward in my illness. I lay in bed breathing in one….breathe out…two….breathe in…three…breath out … four.

living with ME/CFS during the time of the COVID-19: even though I was still ill, I now shared my isolation with the rest of the world

The isolating a severe chronic illness brings is one of the worst symptoms. Suddenly from one day to the next I was no longer an active player functioning in the world. I had been sidelined and was just sick. I no longer had the energy to travel to see my family in Slovakia, or even to see friends and colleagues and go out to the restaurant or even to go to a talk or a conference. As a psychotherapist I was no longer able to see my clients. I have suffered so much loss and have had a tough time dealing with this change and felt like Alice in Wonderland having my world turn inside out. I was confused, angry, lonely, and very sad.

It turns out that I was training for the COVID-19 pan-epidemic. When the COVID 19 pandemic arrived, I was already use to social distancing (who wants to hug someone who is seriously ill). I had been grappling with the depression and anxiety that were now my constant companion. I was isolated, but so was most of the rest of the world. I no longer felt tossed aside because of my illness, I was now in the mainstream. I was now sharing feelings of angst, anger, uncertainty, depression and deep sense of loss with everyone else.

The Peace of Wild Things

When despair for the world grows in me

and I wake in the night at the least sound

in fear of what my life and my children’s lives may be,

I go and lie down where the wood drake

rests in his beauty on the water, and the great heron feeds.

I come into the peace of wild things

who do not tax their lives with forethought

of grief. I come into the presence of still water.

And I feel above me the day-blind stars

waiting with their light. For a time

I rest in the grace of the world, and am free.

— Wendell Berry, “The Peace of Wild Things”

isolation – where did everyone go?

Isolation is one of the most challenging issues I faced when I became ill. Once I was too fatigued to go to work, set up times to see my friends, hear music and the many other activities – I was alone. I was also in a place where I made a plan to meet a friend for coffee but was too tired when the time came and I was too tired. Sometimes I was even too tired to speak on the phone, or text. My social life plummeted accept for a few close friends. My best friend Debbie would send me a card a week with words of encouragement…boy did I treasure those. Being isolated is like being an alien in this world, living a different life. Of course now with the coronavirus we are all feeling this way. Imagine feeling this way but being bed bound.

…..meditation and mindfulness were my constant companions ….

“If all else fails I can always breathe…moment by moment”.

mindfulness helps me be with every moment of my life (even my illness): patience is a virtue

Inspirational quote:

“ in order to discover new lands, we have to be willing to loose sight of the shore for a long time”

I feel that my illness was forcing me to “lose sight of the shore” (Andre Gide) Leaving my life as I knew it before I got sick was drifting away the shore. I was moving towards the uncertain life an unknown life. This unknown can be forbidding and fearful so we have a tendency to return back to our lives of comfort (Janet Abels). But in my illness I could not go back to the shore all I have left is to move into the unknown. I was being forced to choose the unknown. There was no way out. Where I was able to move was towards the unknown. How does one learn to lean towards this not knowing. Will I get better? I don’t know came to be my answer. I could only be in the uk own and focus on each moment that was showing something new to me. The deal was to let go the moment and just working to get into the here and now which in fact is minfulness.

Inspiration motivation quote you are a human being not a human doing. Mindfulness , Life, Happiness concept. Poster in frame Scandinavian style home interior decoration. 3D render

challenges of suffering from ME/CFS and the symptoms keep rolling in and rolling out

Having a name to my illness was good. But after my initial excitement I realized I had to live it everyday. I was upset and anxious that no one could tell me how long I would be in bed. It could be six months and so far it has kept me out of life for four years. Laying in bed day by day I began to realize all that I had lost. My 3K runs and the speed I loved so much…my new career which I only started 8 years ago. I loved my job. With my job I lost the daily contact of about 8 clients a day in the clinic and in class students. Lost regular meditation sessions I attended with my zen friends, regular conferences where I increased my number of psychotherapy contacts.

Isolation increased as I lost friend after friend. They were either too busy to continue to remember past the initial get well soon card or perhaps just did not have it in them to be friends with a sick friend. It brought about negative feelings within them. I became much more focused on the ill people in my life and started to send them handwritten notes of encouragement to them.

I guess with my illness my voice was growing weaker so feeling at my worst I would constantly be asked to speak louder. Or to speak clearer. Phone calls were too exhausting so I barely texted people. The longer I was out of my profession the more I lost my confidence and self-esteem. Even leaving the house caused anxiety. Is this all that was left of me? I was living on 10 to 20% Of my regular energy. Fortunately, I was already on a great deal of adderal because of my ADHD and I added 6 cups of espresso a day. I even tried cocoa leaves from Bogota, Columbia to help increase my energy and bring down the nausea.

With the exception of my constant debilitating fatigue my symptoms changed from day there were plenty of days of migraines, I could not keep any food down for 3 months. The doctors could not figure out what I had. These are just a few examples of the ongoing symptoms. I never new what I had and how long it would spread.

HELPFUL HINT: I find that considering the above throws me into a world of anxiety, uncertainty. In my breathing exercises I often sit with not knowing what will happen. I can only function in the moment…the here and now which is what mindfulness means to me.

animals help us heal

Loving cute girl kissing white horse on head while standing at ranch

Lying in bed day after day I realized that I had a insatiable hunger for the outdoors and animals, especially horses. Naomi and I decided it would be healing for me to go stay at a ranch with animals with which I can interact so off we went to a horse ranch in Condrad, Massachusetts where we arranged to come back to for 9 month worth of weekends. This was like a fantasy coming through for me. From when I can remember as a little girl back in Slovakia (Europe) I spent my weekends on a farm and although my grandfather had horse so they were not mean for recreation. I dreamt of being able to ride a horse.

When I got on the farm I realized that I did not have the energy to work with horses and certainly not to ride a horse. But what did slowly evolve was a love affair with the chickens. When I had to lay in bed all day I could hear the chickens coming to drink water right outside my windows. Once I heard them I was engrossed in the saga and had to get out even for 5 minutes to see them drinking water and so it went until I could come out for 15 minutes and go see them at the chicken coop, pick up the egg and slowly move to becoming their caregiver even making sure they were closed up for the day, the chicken boxes were cleaned and even rake the chicken coop. Somehow all the delicious fresh air, the sounding of roosters in the morning and getting involved as caregiver of chickens energized me. These several minute long trips outside really did me so much good. I no longer felt so isolated because I had my animal friends buzzing around. I also felt that I was able to care for chickens so I was not completed helpless.

There was a time when I became so excited that I bought an app of the sound of various roosters. I held the iphone out of the window let the sound rip and observed what the roosters would do. I was amazed by what happened. The real rooster from the chickens kept responding to my app looking for this large rooster that was threatening his flocks.

My chicken coop home of the chickens and eggs.

On good days when I felt a bit stronger I was able to care for the cows by feeding them, helping to make a small a small fence; and watching the rancher take care of them.

Finally, on the best days I was able to spend time with the horses.

The owners of the farm were kind enough to lend me a pony to take care of while I was at the farm. Even if it was only for a few minutes a day. Rather than visiting the horses and just sitting and being with them I was given the task of mucking out my horses stalls and putting in fresh hey. I also combed the horse, and fed the horse. Although I did not have the strength to take lessons which was disappointing the ranch and all of its senses were enough for me.

I felt so much better on the ranch than in the city. But money ran out and it was time to be inside a one bedroom apartment up in Northern Manhattan. But what to do in the city that can even begin to replicate what I felt on the ranch?

It came to me that I should get a small dog. We bought little Jaro. This little creature changed my life. He follows me around all day. I have constant company. Jaro even jumps on the bed when I am lying down wanting for me to pet him or play with him. He also decided he was the alarm clock and walks to the top of the bed sitting on my chest and dropping a little orange ball on my face every morning helping me structure my day. It feels good to have company during the hardest days when I am in bed all day playing with Jaro and breathing. Having a creature to take care of keeps my spirits up. On days when I have a bit of energy I even take him out around the block and get some fresh air and a little exercise. I would never do this if I did not have my new little dog. What a wonderful role model he is I learn something from him every day about love and compassion and loyalty and simply just staying in the moment.

HELPFUL HINT: Just think of a fantasy that makes you happiest and try to make whatever bit of it happen each day. Even if only a few minutes a day it will help raise your spirits.

the breath is my constant companion

Breathing is one of the most vital part of our lives. We breathe to get oxygen into our bodies but it is more than that. Breathing in a certain way can calm physical and emotional pain. It is the breath that I use to tolerate those difficult days of lying in bed unable to move … those moments of intense physical pain, moments of those flu like symptoms but ten times worse, and other difficult to tolerate moments as I roll through my illness. It is the breath I use to tolerate life. It is the breath that brings me into this moment and this moment that helps me tolerate my illness.

HELPFUL HINTS:

When first beginning to support my breath I used an app called Pranayama (https://apps.apple.com/us/app/universal-breathing-pranayama/id433571551). This is for Apple IOS. There are others for Android and Apple. Check them out and see what works for you.

This is what worked for me. When I breathe I leave my eyes halfway shut without focusing on any point. I breathe in through my nose and breathe out through my nose. Breathing in the stomach rises as the air fills up the stomach, breathing out the air leaves the stomach through the nose thus deflating the stomach. In time my breathe and my entire body and mind slow down causing less anxiety and a new way to tolerate the pain. I breathe lying down when I am in bed too tired to move, sitting in a chair, sitting on a cushion, when standing, when walking, when waiting. The more I do these exercises the more the breath penetrates my life.

The breath, like uncertainty, is always moving, is not fixed, is always rising and falling, always changing. The breath is not anything, and yet it is our one constant the first thing we do when we are born, the last thing we do when we die, and our one constant in between.

The breath can only be breathed one moment at a time. We cannot breath two breaths at one time. The breath is simple.

The breath can only be breathed now.

The breath can only be breathed one moment at a time. We cannot breath two breaths at one time. The breath is simple.

The breath can only be breathed now.

The breath, like uncertainty, is always moving, is not fixed, is always rising and falling, always changing. The breath is not anything, and yet it is our one constant the first thing we do when we are born, the last thing we do when we die, and our one constant in between.
The breath can only be breathed one moment at a time. We cannot breath two breaths at one time. The breath is simple.
The breath can only be breathed now.
The breath can only be breathed now.
(JANET ABLES DHARMA TALK AT STILL MIND ZENDO, NY, NY, 2020)