Chronic Illness and…Yoga Nidra, and the Boner Killers


This is the second blog in a series which I am writing on my experiences with different types of meditation and mindfulness. I will weigh up my experienced pros and cons of each, and explore the potential benefits of them for a person living with serious, chronic, or terminal illness. You can read the first piece in the series, on mindfulness, here

With love and light xxx 

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gumby

I have a disorder which means, among other things, that I am the human Gumby. I am a near 6 foot vision of elastic limbs and a chronic lack of co-ordination that borders on being classed as a pathology in its own right. I can partially dislocate my sacroiliac joint from sneezing. I once partially dislocated my hip so loudly during sex that the guy lost his boner.

But I digress.

I am too bendy. This means that I cannot practice yoga. Yes, I know. It is an oxymoron to profess to be a blogger, and not practice yoga. More importantly, it is inconceivable that I can have a blog and instagram account, and not blog photos of me contorting myself at days break.  Reality is, if I do practice yoga/sneeze/pour a glass of orange juice, a whole lot of people are going to lose their boners. But there is one thing I am really good at (kinda).

Sleep.

My condition causes, amongst other thing (and boner killing properties), excessive and chronic fatigue. During one particularly unwell period of my life, I successfully slept for 22 hours, and I didn’t so much as wet the bed. My family however did think that I had died. I will note that they did not panic or send a rescue party to save me.

Yoga Nidra is defined by the incredibly reliable source that is Wikipedia as “a sleep like state which yogis report to experience during their meditations. Yoga nidra is among the deepest possible states of relaxation while still maintaining full consciousness”. In short? It is a way of meditating in which if you get it right, you fall asleep and have a great sleep. And if you get it right in another way, you feel intense and profound relaxation. Ergo; you cannot fuck it up.

yogi bear

Admittedly, I had to google what a ‘Yogi’ was. Perhaps it is a sign of my age that I thought it was Yogi Bear stretched out on a yoga mat in the smiling bear position. However you wish to label yourself, yoga nidra is something which is possible for anyone of any physical ability. Whether you are an athlete, paralysed, or somewhere in the middle like me, you are able to practice yoga nidra. This means that it is one of the more accessible forms of relaxation, particularly for the disability and illness community.

Yoga Nidra stems from an Indian yoga tradition, and is simply whole body focused relaxation. The underlying theories of Yoga Nidra is that it permits you to become aware of your inner energy forces, or “prana”. This is a little too Yogi Bear for me, and instead I prefer to focus on the scientific properties of the practice.

To practice yoga nidra, you do need to have the ability to hear. This does mean that it is not accessible for people with hearing impairment or deafness. In future pieces I will explore more accessible relaxation practices for people who are hearing impaired. To prepare for Yoga Nidra, you are encouraged to turn your phone off or on silent, and be in a space which is quiet, and where you will not be interrupted. You are instructed to take care of anything which has the potential to be distracting; remembering that you have not set an alarm, or have not closed the window. You will require an audio recording of Yoga Nidra. I will post some of my preferred resources at the end of this post.

There is a specific physical position which is encouraged for Yoga Nidra. If you wish to, and are able to, you are instructed to lie on your back, with your arms away from your body, palms facing upwards. Feet are encouraged to be in line with your hips or shoulders, and your toes falling outwards. Whilst this is the encouraged position for Yoga Nidra, with a physical condition it is not always possible. In my personal circumstances, I am often not able to maintain this position. In my experience, not being able to do so does not reduce the effects of the practice. The overwhelming message of the practice is to be comfortable, whatever that may mean for you.

heart yoga

You are encouraged to close your eyes and listen to the recording. Initially you will focus on your breath, being instructed on taking deep, deliberate breaths. Again, this is not always possible if you have a chronic condition. I have restrictive lung disease and reduced contractility of my heart, so this is again something which I struggle with. But it is more important to be aware of your breath than to control it.

You are then typically guided through a ‘rotation of awareness’. A typical script will go something like ‘Left thumb. Left pointer. Left middle finger. Left ring finger. Left little finger. Left wrist’ and so forth. Your rotation will continue throughout the body, focusing on the hands more often than other parts of the body. You may be encouraged to experience the sensation of lightness, then heaviness, length and then width.

Ultimately, the experience of Yoga Nidra is to be aware of your experience, and to have the ability to feel more pleasurable parts of your body, as opposed to your mind being focused on your pain or discomfort.

More importantly to the science student in me (despite my brother saying that Psychology isn’t a real science), research is demonstrating the positive effects of Yoga Nidra on physiological and mental health. Research into the benefits of mindfulness upon health is an emerging area of focus for science, however early results are highly encouraging.

A 2012 review of Yoga Nidra and it’s therapeutic benefits published in the Journal of Pharmaceutical and Scientific Innovation found that Yoga Nidra benefited many physiological and psychological conditions (Yogitha, 2012). Through systematic review of studies which have investigated the effects of Yoga Nidra, this particular journal article has been able to summarise the benefits found in various conditions. The list and some key points can be found at the end of this piece, as well as the reference.

nude yoga

As always, it is incredibly important to note that Yoga Nidra is not a cure. I practice Yoga Nidra up to four times a week. But no matter how often I practice, I will not cure myself of Marfan Syndrome. It has not significantly improved my quality of life, and it has not meant that I can stop my traditional treatments. I have however been able to reduce how much analgesia I require at night time.

Yoga Nidra does however mean that for an hour a night, a few times a week, I get to experience my body in a way that is impossible for the other 23 hours of the day. I can feel light when my body has left me in chains all day. I can feel the creases in my finger tips rather than the aching deep within my bones. I can feel grounded when all I want to do is faint, my head light and stuffed with cotton wool. For sixty minutes, I get to experience my body in a way which is exciting, pleasurable, confronting, and deeply peaceful.

Yoga Nidra has its faults. It is sadly not accessible for people who are hearing impaired, it can be boring at times, and it can be frightening to try and control your breath if you have lung or heart disease (I have experienced this panic). I now understand that I need to do what works for me and my body. That means no Yoga Nidra pose. It means breathing in a way that my heart and lungs deem fit.

And most of all? I don’t kill any boners.

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At all times, consult with your treating healthcare professional about any alternative practices you intend to try. These are only proven correlations, or links, between yoga nidra and benefits to your health. Mostly, yoga nidra is used in conjunction with traditional treatment. There is no proof of causation. You may see your benefits, you may not. But there is no proof to say that yoga nidra will be the reason you saw benefits; just that it could be. I cannot stress this enough. We have seen the danger of enough health bloggers recently. Be safe, always x

Source: Yogitha, 2012. 

  • Psychiatric Diseases- particularly neurotic and anxiety disorders, in conjunction with traditional treatment
  • Psychosomatic Diseases- physical diseases in which mental health plays a significant role
  • Problems of children- Maladaptive conditions and hyperactivity
  • Drug Addiction- Used in Psychiatric units to reduce tranquilliser dependency. Additionally, suicide preventive technique under strict monitoring.
  • Insomnia-Definite results witnessed
  • Tobacco, Alcohol Addiction- Reducing tension to reduce reliance on tobacco and alcohol to cope with stressors
  • Degenerative Diseases- A very accessible technique for people with severe disabilities
  • Pain- Reduces migraine pain through stimulation of the pituitary gland. 81% of participants found pain relief through use of Yoga Nidra.
  • Arthritis- Management of chronic arthritis pain
  • Pregnancy and Menstrual Problems- To assist ‘natural’ childbirth. Also found to be a successful alternative to drug treatment for chronic period pain.
  • Geriatrics- Succesfully used in increasing confidence in elderly people, and assisting their transition to old age psychologically.
  • Asthma- Reduction in severity and frequency of attacks, and dependency on medications. Absolutely crucial you continue with your biomedical management of the disease. Yoga Nidra cannot stop an asthma attack. Witnessed improvement in spirometry results.
  • Colon Diseases- Some participants cured of Ulcerative Colitis following traditional treatment and yoga nidra. This is a correlation, NOT causation. What does this mean? There is a link. There is no proof it’s the reason for improvement.
  • Cancer- Improvement in survival rates of patients using Yoga Nidra in conjunction with Radiotherapy. The relaxation is linked to white blood cells attacking cancer cells. Again, this is a LINK and NOT a proven CAUSE.
  • Cardiovascular Disease- Preventetive and management technique in degenerative and ischaemic heart disease. Appears to reduce cardiac strain. Excellent preventative technique for Cardiac Disease in conjunction with other means, by promoting a relaxed lifestyle.
  • Hypertension- Numerous clinical trials demonstrating that Yoga Nidra alone, or in addition to traditional treatment, can successfully treat mild to moderate hypertension. Systolic readings reduced by 15-20mmHg and 10mmHG diastolic readings after just three weeks of practice.
  • Stress- Symptomatic reduction in first three stages of stress related illness (Alarm stage, Resistance Stage, Exhaustion Stage).

Audio Yoga Nidra I recommend; It can take time to find the style which works for you. I prefer to listen to women, as I find it more calming. You may prefer a male voice, or a different approach. Youtube and Spotify are a gold mine of Yoga Nidra guided audio clips. Have fun, explore, and always, be safe. 

Yoga Nidra with Elena Mirinov 

Yoga Nidra with Jennifer Reis

Yoga Nidra with The John Hopkins Kimmel Cancer Centre 

Reference: Yogitha, B. (2012). Yoga Nidra and its Therapeutic Applications. Journal of Pharmaceutical and Scientific Innovation, 1(4), 21-25. Retrieved from: jpisonline.com/admin/php/uploads/111_pdf.pdf

Chronic Illness and…Mindfulness.


This is the first of what will be a series of blogs reviewing different meditation techniques which I have personally tried and tested (That probably doesn’t actually count for much, but it sounds good). Each will be an honest account of my experience, and the ways in which they may have the potential to benefit people living with Chronic Illness. The first in this series is reviewing Mindfulness.

With love and light xxx 

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me and willow bathers
According to Wikipedia (Which is a super reliable database and you should use it for all your uni essays), the English word ‘meditation’ is derived from the Latin meditate, which in turn is derived from a verb meditari, meaning “to think, contemplate, devise, ponder”. And that was the house that Jack built.

I am not a calm person. I do not lead a calm life. I do not have a calm family. In fact, the only calm facet of my life is a 32 kilo Golden Retriever that is potentially too obese to metabolise energy correctly. But I digress.

When Meditation was first suggested to me several years ago by a psychologist to help manage my Chronic Illness, I baulked. Not only did I baulk, but I was downright offended, and told her so. ‘So, what? You think all this shit is in my head?’. Note to the audience: Don’t ever ask a psychologist if they think the problem is in your head. It will not go well for you.

There was once a time that meditation was reserved for Yoda, Rafiki and the Hare Krishna’s alike. It was treated with the same degree of skepticism by the medical community as my Golden Retriever eyes a leafy green vegetable. Canine analogies aside, the sentiments were the same. ‘What the fuck is this shit?’. 

I was the greatest cynic of them all. Back during a time when I still believed the incurable to be curable, and that powdered pills would be the secret to shedding the first and cloaking myself in the latter, my Modus Operandi was evidence based medicine and cynicism.

Until one day I learnt that my genome could not be rewired, and this disease would only leave my body when I did.

That’s kind of a shitty deal to cop when you are twenty two years old. And I had no choice but to run with it. Around this time, I had begun to reach my own conclusions that while traditional medicine kept me alive, it did little for my quality of life. I saw little merit in having the first without the latter. I was no longer looking for a miracle, and I was not searching for a cure. I didn’t even want a magical little tablet anymore (Although I admittedly still read each study in which scientists have managed to give a mouse Marfan Syndrome. This is how I imagine they would look)

Screen Shot 2015-05-07 at 5.43.22 pm

I just wanted a better quality of life. I do not claim for meditation and hypnosis to be a cure. It may help you, or it may not. But here is an honest review the different techniques that I have tried. If you decide to try some of them, great! Decide not to? Great! We can talk about dogs or something instead.

Mindfulness

Screen Shot 2015-05-07 at 5.44.22 pm
Wanna know what’s fun? Spending 8 years trying to distract yourself from severe chronic pain and discomfort. And then one day just randomly making yourself be aware of every single sensation.

It hit me like a 32 golden retriever running into my head at full force.

Mindfulness is a form of meditation in which you are aware of what is happening for you right now, non judgementally. Wanna throw your guts up? That’s okay. Just feel it. Feel like you’ve been hit by a 32 kilo goldie? That’s cool. Just be aware of that too. Feeling anxious? Let it happen. And so it goes.

The concept of mindfulness is bizarre for most of us in a Western Society, where we are rarely present and in tune with what is happening for us right in this moment. If we are aware, we typically try to escape it, or to judge it. We have thoughts such as ‘This pain is terrible’ or ‘I shouldn’t be feeling this way’. Consequently, mindfulness is a foreign concept, as well as a confronting one. It can be frightening and uncomfortable, particularly if you have a Chronic Illness. But it can also be incredibly freeing. Finally, after 8 years of trying to escape what I was feeling, I started just letting it happen. What I felt was what I felt, nothing more and nothing less. And it was not until I began practicing mindfulness that I began to appreciate just how exhausting it is to be constantly running (okay metaphorically. We all know I can’t run) away from my experience.

Mindfulness takes practice, and that alone is enough to make most people run for it. Unless there is an English Rafiki to guide you through it.

andy puddecombe

Andy Puddicombe (Yes, that’s a real name. I checked) is the brain child of the Headspace App, described as the ‘Gym membership for the mind’. It’s free, but you do need to pay for unlimited access and additional features. Andy is a former Buddhist Monk who wanted to make Mindfulness accessible for everyone. And so the Headspace app was born.

Comprising of ten separate ten minute guided meditations, the Headspace App is an education in developing the tools to practice mindfulness. Andy’s voice is calm, measured, and not remotely creepy, which is a rare thing in the mindfulness audio tool world. At different stages there are interactive video snippets, helping you to appreciate the values and purpose of mindfulness. Andy challenges you to practice for just ten minutes a day, for ten days.

When I first downloaded the app, I could not concentrate for longer than ten seconds. I would lay on my bed starting at the ceiling. ‘Noticing the sensations in my body…oh fuck me that hurts. When is my assignment due? Did I feed Willow twice tonight? Oh wait yeah noticing the sensations. Am I doing this wrong?’. The thing about mindfulness is you can’t really do it wrong. Each time that you realise you have become lost in your thoughts, Andy encourages you to merely gently come back to the act of mindfulness.

mindfulness

The thing about developing the ability to practice mindfulness is that, in the words of John Green, it happens slowly and then all at once. One day you are staring at the ceiling contemplating what breed dog you would be, and the next you are able to practice for a full ten minutes, and able to guide yourself back to being aware. More importantly for the cynics in the crowd, the science is there to back it up, Timon and Pumba style. There have been various studies on the benefits of mindfulness for people living with Chronic Illness, however one particular study conducted a systematic review of the efficacy of Mindfulness-based stress reduction in Chronic Illness treatment. Having reviewed 18 separate studies, every single one of them demonstrated improvement in the condition of patients after participating in MBSR. Not only was it found to improve people’s physical health but potentially more importantly, it improved their ability to cope with the physical symptoms of their condition (Niazi, AK., & Niazi SK., 2011).

Practicing mindfulness has not reduced my pain. It has not changed it, nor lessened my discomfort. But it has given me permission to stop running from my own physical reality.

And I cannot tell you how nice it is to stop running.

Next post. A review of Yoga Nidra.

What has been your experience of mindfulness? 

Reference: 

Niazi, AK., & Niazi SK. (2011). Mindfulness-based stress reduction: a non-pharmacological approach for chronic illness. North American Journal of Medical Sciences, 3(1), 20-23. doi:10.4297/najms.2011.320

Wellness


“There’s lots of people in this world who spend so much time watching their health that they haven’t
the time to enjoy it.”~Josh Billings

gina

Today I read an excerpt from Gina Liano, who features in the Real Housewives of Melbourne. Whilst I typically wouldn’t grant much merit to a woman featuring in such a show, Gina is a successful and established Barrister, is financially independent, a mother of four, and has recovered from Cancer. In an interview promoting her autobiography ‘Fearless’ to the Herald Sun, she was quoted as saying;

“Despite having everything, it didn’t matter because I didn’t have my health,” Liano said. “If you don’t have your health, you don’t have anything. The true measure of success is being healthy and alive.” (www.heraldsun.com.au).

If I were to live by the words of Gina, I would be to living a life of little significance, defined by all that I do not have. I do not have my health. I was born with a chronic, incurable, and life threatening genetic disorder. As I read the piece I remember saying to my Mum “What a load of shit that is. Am I not successful? Do I truly have nothing?”. Of course, it would be easy to blame Gina. But she is merely echoing the sentiments of a society which is placing an increased and fervent importance on health and wellness. And if you don’t make the cut?

cone of shameThen you end up stuck with me in the cone of shame.

The Wellness Industry is a relatively new one, and one which is incredibly pervasive. Once upon a time, the concept of wellness was absent entirely. The biomedical model, society, even alternative health practices focused on disease. You either had it, or you didn’t. There were no shades of grey splayed upon the counter. You sought help when you awoke to discover that your bones ached. Outside of this, you did not see a doctor, a chiropractor or a psychologist.

You just did life.

Now, as a society, we are not content to just do life. This is not a bad thing. Finally we are appreciating the value in grey, in all it’s infinite shades. You may not have a disease, but your body may be slow, your bones tired. We are encouraged to take supplements and vitamins, practice tai chi, see a psychologist to achieve our full potential and meditate. But at some point, we lost the way between practicing wellness, and being defined by the mere fact of whether we had it or not.

wellness(www.refinery29.com)

“Wellness; The quality or state of being healthy in body and mind, especially as the result of deliberate effort” (dictionary.com) These days, to be a wellness expert, all you need is an iPhone, Instagram, a wordpress account and to write with positive language, accompanied by a perfectly lighted photograph of a smoothie in a mason jar. One can no longer just be a blogger. You must be a wellness coach, a life style coach, a wellness warrior, fitspo or a raw vegan.

I am a blogger, I am a writer. It is what I do. Naturally, I follow other bloggers on Instagram. It is one of the easiest and most engaging way to discover new writers. But it can also be one of the most successful ways in helping me to realise that I, and many other young women living with Chronic Illness, just don’t measure up.

On my Facebook before writing this piece, I asked my female friend’s with Chronic Illness about where they seek information about their health. One friend wrote “…I try to stay clear of Pinterest and Instagram because of condition related self esteem issues”. Finally someone was giving words to all that I could not, or would not say.

Here is the truth of the matter; Most of the time, when you have a Chronic Illness, wellness posts tend to make us feel like shit. Before you slap my hands away from my words, and spit that I do not understand, grant me the gift of viewing the world in a moment as me.

Instagram. There is a perfectly photographed juice consisting of kale, spinach, berries. The caption boasts that it will detox your liver. That it’s the only way to start the day. And then you sit and begin your day with a feed bag pumped through a feeding tube, or a Fortisip choked down, full of calories that the juice proudly remarks that it does not have.

Pinterest. There is the perfectly toned, bronzed belly of a blonde with bleached teeth, a hint of Nike poking from underneath. For, a run is the only way to start the day. Meanwhile, you race to the bathroom and vomit and shit yourself at the same time.

Blog. Drugs are bad for you. Vaccinations are bad for you. Chemo is bad for you. You can recover, and live with wellness, by juicing, detoxing, meditating. There are salt houses, herbs, chakra cleansing and supplements. And with every drug you swallow, every drop of poison that is pumped into your veins, every gasp of oxygen you need, you know that you failed.

jess ainscoughJess Ainscough

I will be judged harshly for this piece, this much I know. Many wellness bloggers and writers claim to be helping people just like me. That they are passionate about health, wellbeing, improving people’s lives. This much I do not doubt. But many also claim to have the ability to cure me, to rewrite my genome, and kiss my Fibrillin better. Belle Gibson, creator of the Whole Pantry, claimed to cure herself of Brain Cancer by eating whole foods. It now appears that her Cancer never was. Jess Ainscough, creator of ‘Wellness Warrior’, just died of Cancer, aged just 30. She had been using the highly controversial ‘Gerson Therapy’ to treat her Cancer.  Her partner Tallon Parmenter recently said;

“In true wellness warrior style, we integrated our natural healing regime with the recommended radiation.
“Finally the walls were broken down between conventional and unconventional medicine — I don’t know why as a society we must choose one or the other.
“This was something Jess was looking forward with sharing (with her followers). It was an exciting evolution from her earlier days of feeling that she had to be part of one extreme world or the other.” (www.news.com.au).

Jess was not the first to die from the consequences of alternative treatments, and she will sadly not be the last. And like so many others, she deserved better.

Screen Shot 2015-04-07 at 11.45.32 pm

I hate this disease. It is exactly that; A lack of ease. The past week I have ended up in the resuscitation bay in Emergency, and had morphine pumped into me by the minute, rather than the hour. I have had a severe allergic reaction to the ECG pads that I was connected to, resulting in lips to rival Angelina Jolie, and my torso scarred, bleeding and weeping. I have spent the past two days vomiting until even water was a recognised threat, my swollen belly beguiling my infertility. The pain in my rotting joints wakes me by the hour, and I cannot tell night from day. And so it goes.

I am not opposed to wellness. I meditate for an hour every single day. I take four supplements a day, approved by my medical team and pharmacists. I use TENS machines to manage my pain, and go to the Osteopath on a fortnightly basis so that the pain does not steal me away entirely. I practice pilates. Sometimes it helps me to dislocate less. Sometimes it helps me to dislocate more. But I continue it all the same.

But quality of state, quality of body, is a quality that I will never attain. All the deliberate effort, all the intention in my flesh, could not undo the April Fool’s of my DNA. I could listen to some of the Wellness bloggers. I could stop taking medications. I could breathe away the disease. I could forego all traditional treatment. And in doing so, I could measure myself for an oak coffin, having signed my death warrant.

Ultimately, the Wellness Industry for me is not about wellness at all. For me, it is a place of blame. If only I tried harder. If only I juiced more. If only.

I live with if only’s every single day. I would not wish this disease upon the bones of any other, least of all myself. If I could free myself of this, I would. Ironically, following the guidance of Wellness bloggers truly would free me of this disease. Just not in the way that I want.

I will continue to meditate everyday. I will continue to visit the Osteopath, to practice Pilates, to eat a low FODMAP diet, to take supplements and to use essential oils. I will also continue to coat my tongue in the powders of the drugs which were designed to keep me alive, I will continue to allow the doctors to pump my veins filled with all that will prolong my life, and I will continue to allow my flesh to be cut apart by countless scans and radiation.

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I have deliberate effort. But that is not enough. I will never be the bronzed, toned beauty sipping from a Mason jar while running along the beach. Tonight I sit in front of the fireplace with my Golden Retriever, talking to a friend. A few hours ago I broke up with my boyfriend. I have vomited all day, and soon I will attempt to stomach enough water to swallow more powdered capsules. I will listen to music and finally my body will allow me to rest, at least for an hour or so.

I don’t have my health. According to many, this would ensure that I don’t have anything. I may not have ‘anything’. But I have enough. And I think that is more than most people can say.