Letter to my doctor

Letter to my doctor

Dear doctor M.,

I am the woman who has visited your office once or twice a year for the last five years. You know, the one with Myalgic Encephalomyalitis, which you like to call Fibromyalgia because M.E. remains foreign to you in spite of the mounting medical documentation available worldwide. This illness has taken a horrendous toll on my life for the past 16 years. I live the life of an elderly person; in fact, many of them are in better shape than I am. I receive Meals-on-Wheels from folks much older than myself. Pain and lack of energy are my constant companions 24/7, 365 days a year.

Walking into your office I can sense, although you seem sympathetic, that you are as uncomfortable as I am. There is nothing much you can do for me and although I sometimes express my frustration, I do understand why you can’t provide the help I need. I know that:

  1. There is no cure for this illness
  2. Treatment is trial and error
  3. M.E. specialists are very rare
  4. You only know the drugs you know
  5. You’re not comfortable prescribing medical cannabis because the College of Medicine makes it a bit complicated for you to do so
  6. Doctors are no longer allowed to refer patients to ophthalmologists (Waiting lists are years long)
  7. Physical therapy is given in order of priority: Accidents and operations first, then all the others (I’m told it’ll take years for me to have access to PT)

And because I cannot afford to go to an expensive private practice for any of my required medical care, I sit in your office in the hope that this situation will one day change. You prescribe all kinds of stuff but that’s it. You are my drug guy…and although you disagree, I refuse to take those drugs I know will make my condition worse. How does that make you feel, I wonder. I’m guessing you feel pretty lousy about it. Doctors like to fix people and you can’t do that with me. So we go through the motions. You give me a quick physical and I go home with my pain, exhaustion and frustration while you go on to the next patient that you can more likely fix. By the end of the day, you’ll probably feel better. I won’t.

Within our Canadian health system which is the envy of many countries, I can’t help but wonder why I am left to my own devices to treat, if not the M.E., at the very least the resulting conditions that are treatable. Why do I have to take on the “system” by my self to make sure I don’t lose my eyesight, the use of my arm, and the health of my already mortgaged kidneys and arteries? I am losing ground and feel I have no choice but to begin a long and complicated journey of writing attention-getting letters to health services institutions, newspapers, ombudsmen and elected representatives.

This weighs heavily on my already weakened body. You’re just human and flawed like the rest of us; I know that you have to work with a health care system that doesn’t always make it easy for you to do your job. I wish I could do more to help you help me. Really.

See you on the path of healing and beyond,

Marianne

 

Image from the painting Weight of the World, by Donni Lockridge

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Why Happiness is Overrated

Counting Roses... Again

Most of us live in a culture that encourages the pursuit of happiness in a way that often creates a sense of pressure to conform to that aspiration. Happiness is generally believed to be found in professional success, health, material possessions, leisure, comfort, harmonious family relationships and an active social life, among other things. Failure is seen as a guilt-ridden inability to achieve happiness because we have not reached our, oh so important goals. And so, we learn to fear failure. We also fear success, perhaps because of an unconscious knowing that it doesn’t come wrapped in lasting rapture.

We have been brought up to think that a less than blissful life is not worth living. We feel ashamed and frustrated that happiness always seems to slip away just as we thought we had a shot at it.

These beliefs need to be challenged! Our brain is not hardwired to “pursue” happiness but strives for our survival and when essential needs are met in order of priority, it will seek pleasure. The notion of happiness is a fabrication of the ego, or made-up intellectual little “self” that tells us we must have more to be forever in La-La land. More, more, more ……… fill in the blanks and then, we’ll be happy. Right? The question then would be: Why are most people unhappy? Although they go to great lengths not to show it, most of the wealthy, healthy, pretty and popular are miserable. Why?

Did we leave happiness in our past? If not, then does it wait for us in the future? We have no way of knowing that; the future can be a scary concept but that’s all it is, a concept. The past does not exist today, right now. Neither does the future because when we get there, it will be another now. So where to look for happiness? I submit this to you: Nowhere because it does not exist. It is an illusion.

What we are looking for is in reality a conscious joy and peace that resides in only one place, and that is inside of our very being. When can we experience this? NOW. Yes, even when we are faced with pain and sorrow, emotions that we equate with unhappiness, it doesn’t mean that we are unhappy people. It simply means that we are dealing with a difficult life situation. Those we perceive as “happy” folks are people who can allow life’s challenges to take their course, managing the best they can with an understanding that things are as they are in the now. They don’t dwell in the past nor do they wait for the future to fix their life.

You may ask how one can feel joy and peace when everything seems to be going wrong. To find the answer, we have to STOP, take a few deep breaths and ask our real self (as opposed to our panicky ego) if there is one thing right, right now. Of course there is. We’re breathing, aren’t we? The list of what is right in our life is surprisingly long when we stop frantically looking for bliss. Even when we’re in the middle of a challenging/difficult situation, with a little compassion for our painful feelings, we can gently bring our focus to the moment and be consciously present as we manage those life events. We can allow the present moment to be. And the good news is, we don’t have to be happy about it!

See you on the path of healing and beyond,

Marianne

Image from the painting Counting Roses…Again, by Donni Lockridge

Looking for Space

Mountain lake

When faced with varying degrees of pain and exhaustion every single waking moment, there are times when I feel hopeless. After years of struggles and heartaches, I am mighty, yes, but I am also very vulnerable to indifference from people who treat me like I don’t matter, sometimes like I don’t even exist.

Interactions with others are precious few when one lives in forced isolation and these contacts with the outside world are all we have to get a sense of belonging to the human race, if not to a community or a family. We notice people’s attitudes toward us probably more than the average person because we drink-in the interactions. Many people are kind and many are not.

I went for blood tests the other day. I carry with me a note from my doctor that says I have ME/CFS and that I am to be considered a priority, i.e. I cannot be kept waiting long on a hard chair in a room crammed with people. This usually gets me taken care of quickly enough but on that morning, the woman at the reception practically threw the note back at me and told me to take a number like every one else. They don’t do “priorities”, she said. I tried to explain my situation to no avail. When I told her I couldn’t sit vertically for more than a few minutes, she grudgingly offered a gurney for me to lie on in the back room, lit with bright fluorescent lights and freezing cold. As I waited there shivering and feeling totally miserable, I started feeling sorry for myself.

I got up and turned off the light and tried to get warmer by lying in a foetal position. I listened to the numbers being called and felt helpless. Then I remembered my mindfulness training and began to breathe consciously: In breath, I “allow” the situation to BE. On the out breath, I exhale the resistance that makes me feel so lousy. I give my feelings of sadness, anger, frustration, etc. a space inside of me: I’ve created a beautiful place on the shore of a crystal blue mountain lake with waters so still, they seem like a mirror. Breathing in and out for a minute or two and I’m there, and suddenly I’m at peace.

Before I knew it, my number was called.

The next time you feel bad, give this a try and with a little practice, you’ll find that beautiful space inside where you are at peace. Here are the lyrics to a wonderful song that has inspired me for many years; it clearly shows that this man knew all about the struggles of the human condition. As do we.

 

Looking For Space (by John Denver)

On the road of experience, I’m trying to find my own way.
Sometimes I wish that I could fly away
When I think that I’m moving, suddenly things stand still
I’m afraid ’cause I think they always will

And I’m looking for space
And to find out who I am
And I’m looking to know and understand
It’s a sweet, sweet dream
Sometimes I’m almost there
Sometimes I fly like an eagle
And sometimes I’m deep in despair

All alone in the universe, sometimes that’s how it seems
I get lost in the sadness and the screams
Then I look in the center, suddenly everything’s clear
I find myself in the sunshine and my dreams

On the road of experience, join in the living day.
If there’s an answer it’s just that it’s just that way,
When you’re looking for space and to find out who you are.
When you’re looking to try and reach the stars.

 

See you on the path of healing and beyond,

Marianne

 

 

Companions that heal

Healing 0717

There is increasingly strong evidence that sharing our life with a pet has important health benefits. Anybody who has one – or more – will tell you that their dog, cat, bird, rabbit or any other creature is the apple of their eye. This is especially true for those of us who are housebound because of illness. Some people have told me that they were surprised that I have a dog. They ask how I can care for her when I can barely manage to care for my close relationships, my home with my husband, and myself.

As I was thinking about what I would say on the subject, I came across a thread in one of our wonderful Facebook support groups. Someone asked whether it is wise to own a pet when one is struggling with chronic illness. The responses came in great numbers! So, I decided to base this blog on some of the comments that express just what our animal companions mean to us. As you can imagine, there were several pictures of those precious friends, each cuter and sweeter than the other!

The following statements are inspired from some of the responses:

My dog is great company and a wonderful comfort on bad pain days.

My pets are the best medicine; they are always at my side.

It’s more fun taking care of doggie than doing housework.

Getting a pet is the best thing I ever did!

I could not live without my pets.

Pets have a calming effect.

Couldn’t cope without my sweet little dog.

She’s a rescue, but really, she saved me!

My dog knows when I’m having a bad day and he lies next to me to comfort me.

They give so much love, just like having an angel around.

Pets provide daily fun and laughter.

My cat is glued to my side most of the time and I love it.

While many comments warned about not getting a puppy, which requires a lot of energy to train, others advised to get a small, lower energy dog – if it’s a dog you want – so that he would be happy with your lifestyle. Cats are better, some say, easier to care for. It is also important to note that dogs, even small ones, must have a walk every day to be happy and balanced, so you need a support system for when you’re not up to it. My little Yorkie goes out with me for about 10 minutes in the morning; she does most of the walking as I just slowly pace and breathe deeply. In the house, she has toys that I throw once in a while; she loves to fetch! My husband plays with her every day and takes her for a 15-minute walk before bed. This is agreeable to her. I know that because if a Yorkie’s not happy, nobody is happy! They make their wants and needs very clear but when all is said and done, my little dog brings me so much sweetness, laughter, comfort and love that I really do feel that she helps me heal that part of me that needs to be needed, to be connected to each moment, to life.

Animals are natural healers; they live in the now, they love unconditionally and make you laugh every single day, they keep your feet warm and your heart content as they snuggle close, so close. The joy they bring to our life far outweighs the energy we spend on them. In fact, many times during the day, my dog makes me get up and move when I would rather stay in my recliner but that is a good thing! It keeps me from aggravating my circulation issues. Besides, there’s one thing for sure: no one comes near my house without me knowing about it; no doorbell needed.

It’s fair to say that I have a nurse, confidante, foot warmer (she likes to sleep under the covers at the foot of our bed), entertainer, comforter and security detail all rolled-up in a cute little bundle of fur.

If you don’t own a pet because you can’t, then try to go and pet someone else’s dog or cat, goat or horse, and feel the calm and the joy enter your body as your pulse slows down and those happiness hormones bring a smile to your face. You can also get a similar effect by watching cute pet videos online; there are so many of them that will make you “awww” or laugh out loud.

Looking into the inscrutable depth of their eyes, we are reminded by our healing friends that life is good.

 

See you on the path of healing and beyond,

Marianne

 

 

The essence of nobility

It had to be you!

Throughout our life we witness and experience a multitude of human behaviors that define who we are as a species, as individuals. Whatever we believe and no matter how many honorable values we hold dear and deem worthy, it is our actions that really matter.

Even if we look and sound fine most of the time – except in the confinement that is our life – most of us living with a serious chronic illness are faced with the fact that we cannot manage even a basic quality of life without the help of family, friends and our community. While we struggle just to get by and confront the ignorance of unhelpful physicians year after year, we are sometimes told to be more self reliant, to be positive and to not use our illness to make others feel guilty for not doing something they don’t feel like doing. Wouldn’t we ALL like to be more accommodating about our illness!

Thankfully, there are people who genuinely understand that pain is pain and that it is not necessary to experience the same sorrows to find a helpful way to respond when someone is hurting. Could it be that compassion for their own imperfections and vulnerabilities enables them to feel the same for somebody else’s? Have you ever known someone who actually behaves in a compassionate way in every day life? Not just once in a while but as naturally as breathing? Most of them don’t make the headlines; they simply go about their business with an open heart.

I have recently been blessed to be on the receiving end of the actions of such people and I must say that I am in awe. I witnessed generosity given without reserve, without pity, only for the simple satisfaction of knowing that another person’s life was made better because of generously uncalculated actions. These people who came to my aid did so without my asking anything more than advice. They just knew I needed what they could give and their gift of themselves and their skill was phenomenal.

As I witnessed them in action, I was struck with one thought: This is what nobility looks like. Noble souls do not expect gratitude or compliments and it is with humility that they receive any sign of admiration. They are not saints, just people like you and me with their own set of ups and downs, priorities and challenges. And so, I want to take this opportunity to honor my friends. A Fabulous Woman and her Noble Knight who have given countless hours of hard labor to help my husband/caretaker and I to be safe and comfortable in our humble abode. What can I say!? Can words ever suffice? The most heartfelt thank you is not nearly enough but I will say this: Dear Sophie and Michel, blessings to you and your loved ones. May a Good Samaritan always be close-by when you need one. You always had a friend in me and nothing will ever change that. I cannot return this tremendous favor by any other way than to strive to be happy because I know that is what you really want. Making people happy brings you joy. You exemplify that compassion is the essence of nobility and you have inspired me! I am so grateful to call you my friends.

The next time we say we really understand someone’s pain, how about making that thought perfectly clear and letting our actions do the talking? Let’s lend a hand, without judgement of any kind, when a person in need asks for our help. Better still, offer it and follow through, just like other generous friends did for me, in spite of their own physical limitations. Compassion is extremely potent, it uplifts everyone involved. I am grateful for the kindness of those of you who have helped me over the years; I couldn’t have made it this far without your precious support.

I sincerely wish that each of us be touched by the compassion of caring people. May we also find our own unique way of bringing more compassion into our little corner of the world, even if it is simply by listening and offering a kind word of encouragement.

It is more blessed to give than to receive. Imagine that!

 

See you on the path of healing and beyond,

Marianne

 

 

Sweet Surrender

Sweet Surrender

It is a natural reflex for all living beings to want to get away from pain, and for those who are faced with daily chronic pain, it becomes an ongoing struggle to get free from its grip. As we juggle medication, nutrition, supplements and every possible way to make our life bearable, we become frustrated and often discouraged when the aching is relentless. Well-intended people give us all sorts of advice from practicing yoga to taking a walk or a bath with Epsom salts. We do all that if we can, and much, much more! Pain management is our daily fare and I daresay we become experts at it.

And still, in those dark and lonely moments, the Dragon raises its ugly head and pushes us to the limit of what we feel able to endure. It was in one of those distressing flares that I discovered, much to my astonishment, a wonderfully simple way to make the pain fade away. I know it sounds too good to be true but I came across this and tried it out of sheer desperation. I had been having horrible headaches for which I have strong medication that, after a week, starts to give me serious stomach issues and this time, it got to the point where whatever I took for the pain just was not working. I’m used to hurting, but this bout knocked me out flat.

I lay in bed for days. Cried a lot. Could barely eat. I prayed. I listened to my guided relaxation and meditation, put ice on my head, rubbed-in peppermint or lavender oil. Nothing worked! As I was lying there, I recalled a practice inspired by Eastern philosophy. I had once read about resistance being the cause of increased suffering and I remembered how I could help myself. Now was the time for me to use this knowledge based on a notion that you have probably heard-of before: What you resist persists. So, this is about taking the path of NO resistance. Here’s a quick example for getting some degree of relief from any affliction or unpleasant sensation, physical or emotional:

Lying or sitting in a comfortable, relaxed position, I close my eyes. I take a few deep breaths and settle quietly by focusing on my breath. After a few minutes, I bring my attention back to the pain. (Now for the tricky part) I just observe the pain without judging it: it is neither good nor bad; it simply is. I try to identify it: is it pounding, stabbing, compressing, burning? I also take a moment to sense how it makes me feel: hurt, anguished, sad, angry, hopeless, helpless? However I feel, I don’t judge myself for feeling that way. Now back to the pain: I imagine a vast landscape with the horizon far beyond. I allow the aching to take all the space it wants. I let it expand across to the sky. I breathe in, allowing that great expansion. As I breathe out, I release my resistance to the pain.

In: I allow the pain all the room it needs, out: I let go of resistance. I see it. I see the pain spreading over the landscape. I feel resistance leaving my body and heart, flowing away, dissolving.

The first time, I did this for about fifteen minutes and after five minutes I did feel a bit better. I eventually got up and was astonished to find that after a solid week of suffering, it had noticeably decreased.

This works pretty well for me most of the time now and I do it whenever I feel the need. It’s not magic but there’s definitely something to it. I hope you give it a serious try. I mean just do it without expectation and with all your conscious presence. Your intellect or ego will surely say: “Yeah, sure…another thing that won’t work.” Don’t listen to it. Get into your heart and let it guide you to your peaceful center. Most important of all as you experiment with this method, be KIND to yourself; it may take some practice. I was pleasantly surprised to experience the peace and relief of SURRENDERING to the unlimited possibilities of the universe.

Do you have simple ways to manage your pain? Please don’t hesitate to share. Not everything works for everyone but there may be someone out there who will helped by your ideas.

See you on the path of healing and beyond,

Marianne

Image from a painting by Donni Lockidge. “Run Over by a Truck”.

 

Feeling Broken

Solitary Confinement.JPG

A winter of much worldwide discontent is behind us and the promise of summer seems to call for a time of quiet, lazy reflection on the shady porch. Through my open window, I can hear the ducks in the pond near the house and the soft breeze that makes the trees sway this way and that. A chorus of birds keeps me company, and sometimes the crows have a gathering of sorts in the nearby woods. They’re like noisy teenagers that you can’t help but like, because, well, they’re just so happy to be alive. My favorite birds, crows.

Last winter, I had a falling out with someone I love dearly. It wasn’t the first time and I chose to distance myself from that person, from a cycle that kept repeating itself, always leaving me in a position of having to suffer the physical consequences of the emotional stress. No matter how many times we tell them that the brain of someone with neurological issues cannot handle emotional stress, people who love us say they understand, but too often, they do not. I find that when I try to make myself understood, it’s like I’m speaking a foreign language. I used to be quite adept at having rational conversations and never backed away from a healthy discussion on any subject, including my own shortcomings. But now, I just can’t handle feeling “not good enough”, not “enough”. Because I have become awkward at speaking when I get emotional, I can’t get a break. I am always wrong and that’s that. I feel cast aside and invisible.

Isolation is the most difficult part of being home-bound by illness. The pain of missing family and the few close friends that still care is so very hard to bear year after year. And when you have to distance yourself from a loved one because the relationship has become toxic, it’s heartbreaking.

As I nurse this heart that’s been broken so often I’ve lost count, I tell myself that I am strong and resilient and that I will find a way to come to terms with this new aching. Time does not heal all wounds, so, I’ll have to work on the only thing I can control: me. On most days, I remember to practice Gratitude for all that is good in my life (like my husband, my dog, both of whom are there with me every day.), I deal with my “Dragon” and do what needs to be done. But it’s still there. That weight in my heart, that hurt. Sometimes I feel broken on so many levels.

I’ve said it before because I know that it is vital: Bringing my Conscious attention in the Moment is the one way to stop emotional suffering. I have to let go of the past. I have to let go of what I think, “should be” and accept “what is”. If I want to reconnect with the joyful part of my being, I must let go of any expectations for the future. No amount of scenarios I produce in my mind is going to change anything. And here’s the kicker: no matter how much pain I put myself through, it will change nothing! The challenge is this: Living in the moment requires that we dissociate our real self from our thoughts. Our thoughts feed our emotions, not what someone else thinks of us. Our emotions make us suffer. Our real self, our being, our spirit, if you will, only lives in this ONE perfect moment. This moment is all we really have, so why not make the best of it by staying in it, just breathing in and out and letting the sad, painful thoughts flow away? We are not broken, just human.

See you on the path of healing and beyond,

Marianne

Image: From the painting “Solitary Confinement”, by Donni Lockridge.