A Buddhist Woman Confronts M.E.
by Venerable Lobsang Rinchen Khandro (Kathryn McIntosh)
I was diagnosed with M.E. a long time ago. In 1977 I had a severe virus; I was on antibiotics due to pneumonia-type symptoms as well as influenza-type symptoms. I was home for a month. When I was a child I often suffered from upper respiratory problems and suffer from labrynthitis frequently, which affects my balance. During this first year I had no energy, I could hardly move. Now if I am honest here, I did turn to using stimulants during this year, just so I could go out and keep up with my other 17-year-old friends. I stopped using these a year later as they weren't helping and I no longer felt it was such a good idea (growing up, I imagine). I fell pregnant the following year and married. Yes, looking back on this now, it wasn't a good idea at all as my body had not recovered. Now it was busy creating a new life. After the birth of my son I was wiped out, no energy. They said it was post-natal depression. I wasn't depressed, just tired.
For the next 20 years they had me on everything they could throw at me! They did all the tests - diabetes, anaemia, the list is endless - and they came back negative. I had pain, migraine, back problems, sleep problems; I won't bore you because they are classic M.E. symptoms. I could name every antidepressant on the market for you, and a few sleeping tablets as well, along with reflux medicine so my poor stomach could handle all the medication I was given. I have taken mixtures of all of them at one time or another. And I can say that they harmed more than they helped. We live in a pill culture; if you have a problem, cure it with a pill, cover it up and make the patient happy. Now, this isn't true for everyone and I am NOT saying you should just drop your meds! Since then I have controlled things myself; I tried a few other things that helped a little, other things didn't. Whenever I went to a doctor the answer was the same, pills or "What do you want from me?" was one GP's query. I had no one in the medical profession to trust.
I have kept various jobs; I was a paralegal, a veterinary nurse for a few years after college, a computer engineer later, and finally a manager in the National Health Service. All the while in the background, quietly lurking was M.E. I had to be careful and sometimes, no matter what I did, I got very sick and very suddenly. This annoyed my employers, but I was not going to be "labelled". Even working for the NHS you cannot be open about an illness that they still consider all in your head. Oh yes, the HR department and your manager will tell you, "Come to us, we will help you. It's illegal to discriminate." Yes dears, but discrimination can be a subtle monster, and still happens every day. I saw first-hand the discrimination and dismissive attitude toward people with an illness, even within the medical profession itself. I know that anger is the enemy of good health and as a Buddhist I am dedicated of course to freeing the mind, thus freeing the body. So rather than being angry, I focused on the little things I could do. Then I did my best with that; if everyone else wasn't happy, well that had to be too bad for them. I would just quietly get on with it. No employer ever knew I had M.E., and that remained the case right up until my retirement this year. I never told anyone.
No friends, I don't recommend this to others; we should be able to tell someone and get help and be treated as equals. At the same time, I know you are all nodding your heads as you have been there too! I was from a different generation, the one where these kinds of illnesses were shameful, and no one spoke about it. So what do you do? I know, you are doing the same as me, saying nothing. Those of you who have spoken up may be regretting it. If you are lucky, your boss is supportive and that person deserves an award of the highest kind! Most of us remain in silence.
I was reading an article about the reasons behind the UK resistance to having M.E. classed as a disease rather than a condition of the mind alone. The authors managed to lump it together with Chronic Fatigue Syndrome in the end; still not a disease, but a condition of combined events. The lead author, a doctor whom I shall not name, is well known in M.E. circles. He and his group are solely responsible for this conception continuing in the UK when in the USA, Australia, New Zealand and Canada it is a very different story; they are making progress, slow progress but some is being made. This is good news, but it will be a while longer before the arguments stop. The reasons for this are quite simple; financially the NHS says it cannot afford to care for M.E. patients, and it also does not wish to provide home care for M.E. patients - we would become a liability. This is true for those with M.E. who are literally home-bound. So as a result of the good doctor’s work, many M.E. patients are being classed as fit for work. It is a game of politics, and frankly medicine should not be political. The insurance companies, the drug companies, parliament, the senate, congress, they all have their own agendas and often to the detriment of the patient.
I was lucky, I managed for 30 years, yet I have managed alone. When I sought out doctors they let me down, they criticised and shamed and blamed. No help was ever found, no matter how patient I was, no matter how many journals I kept, and how I tried this or that medication in spite of side effects.
We are all different, and what works for your friend may not work for you. For me, my life changed recently and I took vows as a Buddhist nun. I now have the option of moving from Scotland to Nepal, and running a small community hospital with another nun, so that is what I am doing. I knew that I would eventually have to quit my job so I have retired early from work. I am selling my home and possessions to help those lacking the most basic medical care. Risking it all to do this is very stressful and is kicking off symptoms, but I am sticking with it! The resultant life will be quiet, I can rest when I need to and I will have some medical care for symptoms. The plan is to have Tibetan medicine as an alternative treatment at the hospital I will be creating. However, this is for me also! I want to try these treatments myself, in an effort to balance the body and mind. I think I will find a way. I am still fighting the good fight, but it isn't easy. So with this change I am hopeful again, which I have not been in a very, very long time. I have a lot of work to do in Nepal and will continue to struggle with M.E., but in spite of all this, I believe I can contribute to society at 53 years of age. I still have a lot to give and I do what I can, when I can, as I am able. I do it with my whole heart and do the best I can every day. This is all anyone can ask. I will deal with the tearful days, the days when I cannot move on my own terms. I am, if nothing else, a determined woman even if my body lets me down. His Holiness says "Never give up!", so that is what I intend to do, and what I want for everyone with M.E. Don't give up! Never give up!
There have been times when darkness took over my life, and I had to return to the teachings (meditation) that tell me that this is a mind perception alone. It is true, what we see and feel is based on our own individual experiences and how we define them for ourselves. This perception while it is created can also be uncreated. So yes, M.E. support is partly cognitive reasoning - yes I have an AS in physiology as well, just to help me understand things for myself!
Just as we came to become ill, so too can we become well. No, there is no cure, but I honestly believe that the teachings, and good natural medicine as needed for other symptoms, combined with a life that is restful and balanced, will benefit me and give me more years than I would have had working in the NHS, with all the stresses that I physically can feel from day to day. Again, this too is a perception, but we all have individual limits and we must be accepting of these limits and not push so hard. There is no perfection in this life; there is only the opportunity for goodness. In that opportunity, if we apply compassion and kindness with wisdom we can lead a better life, even with M.E.
We are all different. Some of us are lucky and we can deal with the demands of such a stress-filled life and be okay most of the time. It's still difficult but we muddle through somehow. I am one of those people. Then if you look at the healthy ones, you know the ones that life seems to look kindly upon; these "okay" people, they are suffering too. Or will eventually, this is a fact none of us can deny. For them an illness pops up and takes over their lives quite suddenly. Maybe it’s stress related, maybe not; who is to say? One fact remains: all their hard work, their goals, the clubs they belong to, the debts, all come down on them in a horrible way. It's awful, truly it is. It's no different for this person than the person with M.E. In this we are the same. Devoid of labels of any disease, stress is the enemy; no rest means illness worsens and may even take a life. It is as simple as that. Our bodies can only take so much with no mental and physical balance.
When there is no balance, it matters very little how much muscle, how many face lifts, how much you go to the gym, how much money or how popular you are. When there is no balance we get ill and can die sooner than expected. I have seen very healthy men have heart attacks at 30, 35 and 40, and it shocks people. Why? When there is no balance you suffer... yet they still do not believe. Balance is important to M.E. sufferers, just as it is for us all!
I am leaving the life in the west for Nepal. My life in Nepal will be difficult; there will be many hardships, but it will be a simple life. During the heat of the afternoon, everyone rests a little (or most of them do) and the day ends much later as a result, but it is a quiet ending with family gathered around an earth fire sharing the day’s experiences. I will have a lot to do, but I am not doing it alone. I have help and things will go slowly, and progress as they are meant to. This thinking is a matter of balance. Accept what you can't change and change what you can't accept. It is an old saying, but very true.
I pray every day for my brothers and sisters who cannot even get out of their beds! They are not lazy or crazy, they are ill! It is time that doctors woke up to this fact and tried their best to find useful, usable helpful methodology for us so we can cope, so we can have a life, rather than simply exist. I am hoping to help others by being a guinea pig and testing out some things on myself. I will write again and let you know how I get on! Our website is www.bhwasacharity.webs.com if you wish to see it.
Since I wrote the article I have had challenges, so I will update you:
Last year I managed to open a small clinic for the poor in a remote village of Nepal, funded by the sale of my home. I was solely in charge of this project, and during the work I still struggled with the weariness of M.E. Living this life is better though, and I can rest when needed, so this is what I did. I only managed this work by carefully watching my health, and not doing everything at once. I paced myself and sometimes had to admit that rest was all I could do. The clinic is a great success and many people are now receiving help. I have no money or home now, but I am happy and happy for all of them.
I spent nearly a year in Nepal before returning to Scotland to stay with friends. This in itself is a struggle though, as I am very aware that I am not their family and cannot remain there long term. I am now taking training at Thosamling Nunnery in Dharmashala, India. As part of practice here at the nunnery we get up at 4:30 am, which makes a long day.
I also teach Buddhadharma, and do a lot of charity work, so I am often just as busy as when I was working as a laywoman! Traveling can be exhausting sometimes, but through meditation and taking time for myself, I manage to keep things balanced. No my life isn’t perfect, but all existence in this world has its challenges.
Getting angry never helps us. We have to counteract medical opinion with our own inner wisdom. I think this is all M.E. sufferers really have. When you feel like you are beating your head against the wall, my best advice is to stop! Protect yourself the best way you can. Take time for you. At lunch take a nap for 15 minutes. Meditation once you are home from work is very useful. Turn off the telly! It's ruining your quiet time. Turn off the radio. Listen to soothing sounds and let go of the trouble of the day. Just sit in the garden with a cup of tea. Just be quiet. We carry with us the stone of our life, and our minds and bodies weary from the struggle. So put the stone down and rest. I know sometimes it's not enough to do these things, and despair can easy take root. But keep trying. No one can help you but you. You are in charge.
If you don't work, then take advantage of your time. Rather than focusing on the label of M.E., focus on the fact you are here still trying to find a solution. Congratulate yourself for your small achievements and the good minutes or days that come. They all count! Don't give up. I have no cure and still struggle. Some days I'm so weary I can barely breathe. On these days I let go more and more and rest. I find that only then does my strength return slowly. Then I don't do too much and overdo it as I was prone to do. I do things slowly even on good days. And what can wait for another day simply waits. I won't tell people what to do. I only share what has worked for me. Gentle life, a quiet life, is my solution. M.E. is still there, but I am in control!
I plan to return to Scotland in the summer in order to continue with teachings. I pray for everyone's success. I wish everyone the best. You are worth the effort. Never give up on yourself. It is the same compassion that I have for the poor in Nepal that I have for all of you. I pray for all of you! May I be a boat to all who wish to cross the water to peace. Be well everyone.
I have been moving around a lot due to being homeless; after coming back from Nepal and India I was spent. My health was limited, I had to rest, but there was no time for rest. I found myself without a place to stay again, so briefly I stayed with a friend, then seven months later I had to move again. I moved to Belgium of all places and stayed with one of my teachers. Only in June 2016 was I offered a place in America where I volunteer as Spiritual Programme Coordinator. So this is where I am now while writing to you.
Now that I have had to leave the UK I have no medical insurance as it's too expensive for the poor like me in America. Medicaid is not available for me as I don't have children and am not pregnant. They gave me STD pregnancy coverage, but as I am a Buddhist nun of 56 years of age and menopausal, also keeping a vow of celibacy, this is hardly useful. I was very amused when they told me!
As I am still considered able to function as a human – I can walk unaided and stand longer than 15 minutes (I must find a chair at 20) – I'm not disabled enough for any benefit here. No change from the UK. I would have to pay for expensive tests to prove I'm ill here. This is out of my reach.
I keep my mind busy by being a volunteer working with prisoners on death row, helping them with meditations and teaching them a better way to be in their lives. It's rewarding and, while I don't get paid for this work, I love it. The hours I work are up to me. If I need to rest I can. No paid job will allow me to do this and let me feel as if I can contribute to a more compassionate society. I am wholly dependent on the kindness of someone who gives me food and lodging. That alone is a stress factor, so I try not to think about it much. I am so grateful and lucky!
I am overjoyed when I get to see these men and women find a space to feel remorse for wrongs of the past, to help them to see how what happened to them was a mistaken way of being. It's not easy and many of them committed horrible crimes. But in my mind, revenge is never an answer for wrongs done – if we seek revenge then we remain victims, and become much like the ones who have been accused. They are lost and in pain and so too we become lost when our minds are filled with hate and anger. Anger is a horrible taskmaster.
When you have chronic fatigue, Fibromyalgia, M.E., chronic pain, your mind is always affected. You get angry, depressed, hopeless, and not because you are typically an unhappy or hurtful person, but because there are physical changes in the body that relate to brain behaviour. Being lazy, idle, or faking isn't what is going on! It is a real physical condition.
I know well, my friends, the sleepless nights, the pain, the lack of ability to cope with changes, the sick feeling in your stomach as your anxiety creeps in; you are just too weary to cope with any of this. You have bouts of high blood pressure no one can explain: one day it's high due to stress, the next day you are fine. When you have highs and lows like this your brain is starved of blood flow. Then what? I know and so do you… a day or so later you might find that you have crashed, your body unable to adjust to the rapid demands of a so called "normal" life.
I mediate daily for two hours before rising, and before trying to sleep. I say "trying" as it's been four months now and I am not getting any more than three to four hours a night. I am retired so I can take things at my own pace but there are demands on my time, people I love, and I must make an effort for them.
People who don't understand that I have an illness as they cannot see anything wrong behind my smile, or my gentle touch, they think it's all okay. They don't know that my foggy mind and this multi-layered condition is the cause of my weakened condition, an invisible illness that is why I get depressed or over-anxious and cannot tolerate noisy crowds or bright lights. They misunderstand when I say I need a break and don't wish to verbalise what I am experiencing.
If you are like me, on the good days – if you have any – you work hard trying to catch up and get a little ahead. Because the fatigue is bad and you know it will come again and again, an unwanted guest in your mind.
This activity then brings on an episode a day or two later: gripping fogginess and confusion of the mind. You lose things, can’t find that person’s name, can't locate your keys. Even while dusting the house, you leave your cloth "somewhere", but where? You are so tired in the morning; regular sleep runs away from you like a naughty child who won't and can't sit still. What I advise is this. If you do have the occasional good day, dear ones, be reasonable. Take it slowly. Let go of the fact that you want a GP to understand. It's rare when this happens. So you must take control.
I still can overdo things when I have a good day; even going for a walk for 15 minutes is too much. Five minutes is my limit. If I stick to this, then I might be able to do it again the following day. Not very often, but sometimes I get lucky. I could do more but it's not worth spending days in bed as a result.
I even only allow myself to make one doctor’s appointment in a two-week period. Especially the dentist! You have to argue this sometimes, but it's worth it! You are in charge! I don't tell them why you need this, just say you’re "unavailable". This way, even when getting a teeth cleaning, I can rest in between. It takes longer to get things done, but the reward is a little precious energy.
Never fear turning down that office party, or not going to grandma’s or staying shorter than anyone else when visiting friends. Don't explain, there is no need, just be happy, smile and be polite – then thank everyone and excuse yourself. Let it go, lay this down and don't carry the pain or disappointment with you. Rejoice that you could go to a party or celebration at all. If you have an event at home get help – let your sister in law make that horrid pudding for the millionth time, let your gran help set the table... wrong, but her way, ha ha! Many of us are alone, so call a friend, say hi and chat. Bring old funny memories to mind and have a laugh. Rejoice at every moment that you are still here. Know that I am praying for all of you!
The Night Vigil
My light burns bright but darkness surrounds me still
Where is happiness, what does this mean?
Is it the cup of tea or the softness of a warm blanket on a cold winter’s night?
Is it found anywhere in this life filled with sickness, ageing and death?
How can I be content when my brothers and sisters all suffer - how can I be at peace?
Tears come like rain... what can I do, where can I go... where is peace for us all?
My dear brothers and sisters, though you would not ask it of me, if by losing my life this would end your suffering forever, then gladly I would give it.
My prayers are strong.
My love and compassion for you is complete.
It is stronger than any disease, more forceful than any hurricane
It never moves from my heart or mind and never dies; of this I am certain!
Outside my window an owl softly calls and the crickets are sleeping
In the deep stillness I can hear the gentle breath of my sisters as they say their evening prayers
Sweet Voices that kiss the stars with loving faith and wishes for lasting peace.
Their prayers are strong.
So... here is my happiness. Here in this small space where prayers reside
Between each breath, the compassion that is unshakable and knows no bounds
With each tear and each sorrowful sigh, the whispers of hope fill the space between
Here is where I love you unconditionally... here between each breath is where hurts and disappointment are washed away forever.
Here is where happiness is.
Yet this life is changeable and even this will not last.
So I share this with you, my brothers and sisters ... until tomorrow
I shut off the light and in the darkness I wait...
for another day and another chance to once again gently whisper my love for you all!