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

10 Things to Know When I am in a Flare


dodge a wrench

On New Years Eve, I was at the beach in Geelong with my best friend, who we shall call Shelby*. Together we watched the fireworks at Midnight, as they echoed around the pier. As the fireworks drew to a close, we began to walk back to the car when PSTTOOOOOHHHH.

Some cock head decided to shoot a flare.

So naturally, I did what any best friend would. I grabbed Shelby and shouted ‘YOU ARE IN THE NAVY. YOU SIGNED UP TO SAVE OUR COUNTRY’ and used her as a human shield.

To say that this has bought about a fundamental change in our friendship is an understatement. Shelby now eyes me with the same level of mistrust as my brother now eyes Pork Sausages, since the Great Food Poisoning Incident of 2014.

This is the usual kind of flare that is well understood and recognised, albeit one should not have to recognise it as it hurtles towards your head (or your best friend’s head). But when you have a Chronic Illness, a flare takes on an entirely different meaning, and one in which you would preferably take a standard flare to the head rather than have the Chronic Illness Flare.

Flares are different for every single person living with a Chronic Illness. No one understands this better than my Dad, who lives with both myself and my Mum, who is Seriously Ill. In one hour he can have me attempting to choke down a sip of water while Mum inhales the contents of the pantry from Prednisolone cravings. This list is relevant only to my own individual experiences. If you take this to be the Chronic Illness Flare Bible, then I am not responsible for anything that happens to you (including someone shooting a flare at your head).

brace yourselves

1) Do not bring me food. By food I mean anything that has the potential to be ingested, even incidentally, like toothpaste. Flares for me mean vomit, and lots of it. Alternatively, it can mean that I have as much control over my bowels as I do over the gravitational pull of the moon. Some people during flares cannot stop eating. I just can’t start. This then spirals into Dad trying to coax bits of mashed potato into my lips and sticking straws up his nose intimating the naso gastric tube that will soon be mine if I don’t gain some weight. And all the while I have Mum death staring me in the midst of her Prednisolone binge.

2) I am probably going to be high. Like, all of the time. I am anti drugs. I have never even smoked a cigarette (Although I did once snort some Wicked Fizz if that counts for any street cred). But the Morphine, the Oxycodone, the Mersyndol Forte and whatever else my doctors want to pump into me are going to get me higher than my standards in men. I would like to apologise for anything I have said, and will say, while I am high. P.s I think I’m in love with you.

3) I will also probably be a bitch. Anyone that knows me would describe me as one of the happiest, easy going people they know.
Until. 

Until I fall into the Pain Hole. That’s really not as sexual as it sounds, I assure you. When my Mum began treatment induced Menopause, my Dad devised the Menopause Alert Siren. This effectively involves Dad making an air raid siren and diving for cover under a piece of furniture. Having discovered it’s comical value, Dad has now applied this to my Bad Pain Days. I am irritated. My tolerance is at an all time low. I am overtly sensitive to physical stimuli (Can you fucking speak a little fucking quieter?). Lights are too bright, the TV is too loud, and you are guaranteed that you will say or do the wrong thing. P.s Fuck you

wavy man

4) I am extra bendy. Hormone levels increase dislocations and subluxations in people with connective tissue disorders. Hormone changes also make you a lot sicker. This ends up ensuring that when you are at your sickest, you are also at your stretchiest. At the moment I am in the middle of a nasty flare. Last night I partially dislocated my hip pouring a glass of orange juice. Not only am I vomiting/shitting/swearing/high, I am also probably on crutches and waving my arms around really awkwardly cause my shoulders are popped. I am effectively just an inflatable waving man on Endone.

5) I sleep, excessively. Ask anyone with a Chronic Illness and they will tell you that fatigue is one of the worst symptoms they experience. There are three levels of Flare Fatigue.
1)I cannot shower myself
2) What is life
3) I can see sounds

No matter how much you sleep, you do not awake feeling refreshed. But you cannot do anything else, so you just have to suck it up and know that you are missing out. Which brings me to my next point.

best friend order

6) You probably won’t hear from me. I am too unwell to meet you for coffee. I am also probably too sick for you to come to me for coffee. I will not call you, and I probably won’t reply to your texts or Facebook messages either. It isn’t that I don’t want to, it’s just that I don’t have the physical capability. Alternatively I am convinced I replied to you and think you are being really rude by not replying…



7) But I still get lonely. Even if I am too sick to reply, to hang out, to speak, message me. Send me a text with a photo of a Golden Retriever, just say ‘thinking of you’, or shoot a flare at my window. Just let me know you are still around, and that when I am feeling a bit better we will catch up.

8) I am behind everything in my life. This means Uni work, paying bills, cleaning, doing washing, showering, medical appointments, socialising, grooming the dog. The sicker I get, the more I stress. The more I stress, the sicker I get. Offer to take notes for me in class, to drive me to a doctor’s appointment or to just visit me for half an hour and play with my dog. I have a cute dog, so you will benefit also.

two goldies

9) I forget. When you have a flare, it becomes impossible to remember that it will ever get better. I panic, and think that I will never get back on track again. There is no feeling so frightening as believing that you are in an uncontrollable spiral, a flare hurtling towards two women on a jetty, and that things will never be okay. Be there to help me remember. Remind me of all the flares that have come before, and all the ones that I recovered from. Give me perspective, and show me that you remember, even if I can’t.

10) I will be okay. Ultimately, this is the most key point. Sometimes I keep a complication from a flare for the remainder of my journey, other times I don’t. At the moment my vomiting is finally begin to ebb, the lobster allergic reaction rash that covers my torso from ECG dots is fading into a pink, and today I managed to do some pilates. As long as I know that I have you there, flare or not, I will always be okay. Take the hit of the flare with me.

Blood Sport


In the past few months a few people have requested for me to write a blog on what it’s like to love someone who has a Serious, Chronic or Terminal Illness (of any nature), from the partner’s perspective. The woman that this blog explores is not myself, or any one particular person. Rather it is a collection of my journey, and the journey’s of others who I have been blessed enough to share with them. One day I hope to be able to write from the perspective of someone loving a man who is unwell, however for now this is a good place to begin, in more familiar territory.

All lyrics are from ‘Bloodsport’ by Rayleigh Ritchie.

Love and light,

Jess xxxxx

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Nothing is perfect but your imperfections are quaint

And your love is worth it and for that I will wait
And though you hate me, when you have a turn
I drive you crazy but you always return

black balloon

Just as sure as she could appreciate that I was never going to be the type to pick my towels up from the bathroom floor, I understood the betrayal of her own flesh. She could never hide it, nor  would she have. She was defensive. ‘Love me, love my disease’. She expected me to lurch for the handle and never pause to look back, and deep down I think part of her wish I had. That way I could never leave her later, she would have too much to lose. It would destroy her. No, she couldn’t live through that again.  But now? It would be a clean shed, requiring nothing more  than an indifferent shrug.

She was curled on a mattress on the lawn that she made me drag outside. ‘What’s the point in having a lawn if you can’t make it a bedroom?’ she argued. If I really concentrated, I could make out the puckered scars peeking from the gap between shirt and short. But I couldn’t concentrate, not when she looked like that. She grinned at me from beneath a hat of Audrey, and in that moment I made my decision. Love you, love your disease. It added nothing but an extra flair, and made her vivaciousness all the more exciting. Besides, how bad could it get?

If I fall short
If I break rank
It’s a bloodsport
But I understand
I am all yours
I am a man
I’m on all fours
Willingly down

bed

I was full of promises, and I promise you that I believed them. They were not yet tinged with regret, and I’m still unsure as to who would live to regret them more. God knows it sounded great. Never let the truth get in the way of a good story, isn’t that what they say? Truth be known it was firmly cemented in my own personal mantras. But I really did sound great, that’s the thing.

‘No matter how bad
‘You don’t know how bad it will be.’

‘Even if you can’t’
‘You will have to carry the weight of a pair’

‘I will go to the end of the earth’
‘You still won’t find the cure’

‘No matter what’ 
‘But what if’

I shut her up. And I kissed her.

I felt her hand slap me cold. Her eyes were wild. Don’t do this to me. Don’t do this to me. Don’t let me love you.

And I carried her to our bed, where we stayed until the stars seasoned the sky once more.

No matter what.

Loving you is a bloodsport
Fighting in a love war

Although you love me, sometimes we meet
Things can get ugly but we’re still a team
We are an army, the brakes are within
But that’s why we’re stronger, and that’s how we’ll win
It’s not what I’m in love for, I know
But I don’t know if you can’t help it
Baby, I’m just being selfish

katie kirk

I creak open the door and now I don’t know how to breathe anymore. There’s so much blood. She screams at me. Get out, just fucking get out. I gather her into my arms and feel her chest break in two. I swallow hard and hope that it is enough to drown both of our cries. Don’t look at me, don’t look at me. So instead we lay on the bathroom floor together and I listen to her howls. And it is then that I break my promise. Love your disease. She is too sick to care that I have just taken all from her that I ever gave.

hospital love

Not all the days and nights are quite so piercing, it’s the days in between that hold a quiet heart break; Too well for admission, but too sick for life. She smiles weakly from beneath the sheets. Ironic isn’t it? Sleep steals her from me more than the daylight hands her back into my arms, and I see her eyelids fight it, more for my benefit than hers.  I would be lying if I said I wasn’t disappointed each time the former wins. When she awakes, she snaps at me. Why don’t you just leave me already? It’s not like we ever get to spend time together anyway. She woke each hour on the hour, and I am too tired to side step the net. It seems to be what you fucking want, why can’t you just accept that I want to be with you? We don’t speak to one another for the rest of the night. Later I find her angrily blinking back tears as she wrestles with a lone button on her bottoms. With only our hands speaking we find our way into the shower, and all is forgotten once more.

I’ve got your back and though it’s stacked against us
I’ve got your hand, it’s us against consensus
And I will burn the people who hurt you the most and I will not learn
‘Cause I am too young and too dumb to consider the terms

 

if i didn't have cancer

One day I wake long before the sun has felt the need to lazily roll out of the sky, and I realise that we have found our normal. Mondays are treatment, and Tuesday’s are tired. I cup the mucous from hher lungs after dinner but before bed time meds, and the dog eats another shoe. Wednesday she may study and Thursday she will do her best impression of the dishes. Thank god it’s Friday and shit did we forget to get her scripts filled? She is lonely during the day, too exhausted to play host to anyone other than the mail man.  The weekends are hers, and she grabs at me so intensely that I am sure she will never let go. I’ve missed you, she mumbles. If she is well we will drive to the beach and I will yell at the dog for rolling in all unholy things that are to be found on the stretch of sandy dog haven. Often as I see other pairs walking past hand in hand, I try to imagine what they see. I wonder if they see how beautiful she is.

 I’m breaking the law and I’ll curse the day that they return
With a smile on my face as their heads hit the floor
And it’s done, now it’s curtains, the blood lost, it’s the cost, it fucking hurts
But it’s working and even if you ask me to stop it’s too late
Because I’ve already decided that faith is not a distaste, it’s pure hate
And it pulsates and it works its way around my brain

couple dog bed

Love me, love my disease. I still remember my promise, and despite my best intentions, I can’t bring myself to love all that destroys her. She is hurt. I stare at her in disbelief. ‘Are you seriously pulling my leg right now? You’re offended I want them to make you better?!’. She spits back. ‘Of course I am; I’m just too much for you. Why can’t you say it. Love me, love my disease! What a load of shit. I should never have believed you’. I motion to the powdered lollies tiling the kitchen bench, the vomit bag clutched in her hand, the blood staining the ensuite bathroom no matter how much grease I bleed from my elbows. ‘This! I can’t love this! This isn’t you. This is killing you. Can’t you fucking see?’.

I took the forbidden fruit and threw it in her face. And to my shame, she apologised. ‘I’m sorry this is killing you too’.

I don’t know what to say. If I tell her it’s not, she will hear my lie. So instead I kiss the top of her head, and tell her she is beautiful hair or no hair.

I work my way to her lips, and tell her that the vomit never mattered.

Her collarbones are next, and no matter how sharp they poke, she will always be woman to me.

Her spine, watermarked by bruises. Her belly, puckered and pale.

I kiss every inch of her, and of her disease.

No more fixing. No more searching.

Love you, love your disease.

And I promise all once more. Each time I mean it a little more.

love through illness

Neither would have chosen our sad and gentle reality, punctuated with screams in the night and raucous laughter after half a beer and a Saint Bernard. With each day that passes I can appreciate a little better just how much her illness holds the ability to destroy everything I ever loved, and take as much from me as it does from her. Some days her eyes forget how to smile, and she cannot wake for longer than an hour. If sleep does not steal her from me, then the medications takes its place. People look at me and they don’t understand why I would choose this life. But just as sure as she did not choose this illness, I did not either.

I chose her.

And I will forever play this blood sport, if only to hold her for an hour.

Things you don’t get told about sex when you have an illness or disability


Whilst working and studying in nursing I had to take a departure from some of my racier blogs, in order to uphold a professional front at all times. Recently and devastatingly I have had to leave nursing due to my health. That is a blog for another day. However, it has it’s positives; I can return to sex blogging (hooray).

A few days ago I wrote a Facebook status asking my friends to finish the sentence ‘Things you don’t get told about sex when you have an illness or disability…’ and submit it anonymously to my Tumblr. This blog could not have been written without the contributions and help from my friends. We all have different conditions and challenges, and their insight has been invaluable; so thank you.

Also a shout out to the one person who merely submitted ‘moist’.

I hope that I can write a series of blogs on this very topic, a topic which is grossly misunderstood, and often reacted to with horror, disgust and plain ignorance.

My blog, as well as myself, are straight, gay, lesbian, bi and trans friendly, and ultimately sex is between the two people, because at the end of the day, sex has a lot more to do with the individuals involved rather than the genitals which may be mentioned in this blog.

I also highly recommend the following link to a campaign in the UK about increasing awareness and reducing stigma for sex and disability  http://enhancetheuk.org/enhance/undressing-disability/

With love and light,

Jess xxx

………………………………………………………………………….

I received ‘the talk’ pretty early on, much to my horror at the time. And to be honest, all these years on, I remain in some state of shock, with the odd flashback. There is something about the words ‘sex’ being spoken from your parents mouths which delivers it into the pile of  Extreme Awkward Moments, along with time my brother featured in a documentary on Australian bogans, where he is pictured with his genitalia stuck in a beer can.

bogan brother

But I digress.

However, there is ‘The Sex Talk’ and the ‘Sex when you have a Chronic Illness/disability Talk’. One is perfectly acceptable and encouraged, and the other is treated like the moment when someone’s dog starts humping the leather lounge and you don’t know whether to ignore it or address it.  The latter talk doesn’t seem to actually exist. Sort of like someone posting an instagram selfie without a filter or the Christmas dinner in which there isn’t one relative who manages to offend every living creature that ever existed (such as my Nan finding out my brother starred in a documentary with his dick stuck in a beer can)

As a general blanket rule, society is uncomfortable with the idea that the ‘sick’ and ‘disabled’ are sexual beings, with genitalia that has as many needs and desires as our able bodied counterparts. Those of us with illness and disability are not projected as sexy, sensual or downright horny. We are inspiring, vulnerable and needy at best, and unappealing at worst.

aimee mullins
Aimee Mullins- Athlete, model, L’oreal spokesperson

I’m not sure that anyone in the media has actually ever met someone with illness or disability. The majority of my friends just happen to have illness or disability in some form, with a varying degree of physical limitations. And they just so happen to have the most active sex lives out of anyone I know

Research has consistently demonstrated that adolescents living with chronic illness or disability have increased rates of engaging in risky sexual activity and higher rates of contracting sexually transmitted infection. There are a multitude of factors contributing to this; a desire to achieve ‘normality’, a consequence of realising your mortality at a devastatingly young age and a culture of sexual taboo and ignorance for those with illness and disability.

Sure, young people are taught the basics of sex. Object A goes into or against Object B, and the first time will be the most disappointing 8 seconds of your life (and that’s if you are lucky).

But this is where the education ends, and my blog really begins.

It’s not always easy

enhance the uk

Enhance the UK Campaign

“Having sex with an illness is different to anyone would even imagine. I’ve had sex with both guys and girls. Your energy levels are highly affected. Plus the emotions at times. It’s even hard to sustain a relationship through it all. I’ve had a relationship where the person and I were having sex and then afterwards they were so upset because they were scared I was going to die. Though sex can make you feel close to someone and makes you feel safe. Like your normal for once in your life”- Anonymous one

When you have a chronic condition, you often experience an array of physical symptoms that don’t magically disappear just because someone happens to have a boner. Few people feel like being intimate when they have gastro, the flu or a migraine. But for some of us, we constantly feel like this. It doesn’t mean we don’t want sex; in fact, our physical distress often intensifies our need to feel something good. We want that emotional and physical connection more than anyone. But it’s not easy. We have to navigate the bad sort of breathlessness, chronic pain, nausea, dizziness, seizures and infection…and that’s all before the lube comes out.

It doesn’t mean it’s impossible though, and like most things, we manage to find ways around it. Literotica throughout the day prior to the event, a hot bath or even sexting can create an anticipation which is able to ‘overcum’ the physical distress.

And while it may take a few different tries, when you finally manage it, you appreciate it a lot more than any old quick shag.


It can make you sick.

hospital love

“Sex is all fun and games until you go in tachcardia and almost have to go to hopsital, Imagine the nurses faces when they ask what you were doing prior to the tachy and you have to reply with.. Getting my brains screwed out.”- Anonymous two

When you have a Chronic Illness or disability, no part of your life or body is sacred, and that too applies to your sex life. At every scan, every infusion you are asked ‘Is there any chance you could be pregnant?’. Last time I was asked this I just laughed hysterically until the radiographer was too embarrassed to press for further details. And sometimes sex can make you really sick.

Sex is a little bit like running an awesome sprint race, or an extended marathon, depending on whatever floats your boat. As a general rule, when you have a Chronic Illness you don’t really run many marathons. Or sprints. The extent of our physical peak is often running a hot bath of Epsom salts. Our bodies aren’t typically designed to play with the rubber ducky.

You might vomit. You might seize. You might become tachycardic. You might be in pain.  You might even crack your hip so loudly that he loses his boner (Trust me, it can happen).  As with everything in life when you have a chronic illness or disability, it’s about finding the balance. Everything has consequences. You can have an amazing orgasm, but you may also spend the rest of the night on Endone for pain.

Ultimately however, we should never guilt ourselves, or allow anyone else to guilt trip us, into suffering a consequence that is unacceptable to us. I have spent many a night or day feeling wracked with guilt that I felt too unwell to ask him to ‘fish in my pond’. Sometimes the guilt was as a result of my partner at the time, but more often than not the guilt came from myself, and the unrealistic expectations that I held about what ‘everyone else was doing’.

At the end of the day? If it’s worth the consequence, go for it. If not, maybe put on a solo show for your partner or write an IOU. And if they don’t understand, they don’t deserve to have the pleasure of your pleasure.

sex blog awkward position

An awkward position.

“Sometimes sex the ‘normal’ ‘missionary’ just doesn’t work! Especially if your legs don’t move in certain ways!! Haha”- Anonymous three 

Thankfully, the Kama Sutra was written long before the A-Z on Chronic Illness and Disability, and we should all probably take a moment to thank these ancient people for their ‘stroke’ of genius. Often when people hear that my condition causes rather extreme flexibility I get a few nudges and winks. However, just because your body can do something, it doesn’t mean it should. And on the other hand (or ball, whatever), your body may not be able to move in a way that others can. It’s all about what finding works for you and your partner. You can now download free kama sutra apps on your phone, complete with check lists and a passcode on them. But most of all, it’s about having the courage to say ‘Nah this isn’t working for me, how about we try this?’.

These physical challenges aren’t just provided by our bodies, but often the medical equipment which we rely on. This can include but is not limited to oxygen masks, feeding tubes, prosthetic limbs and drains.

sex medical equpiment

“I have an ileostomy. Having sex was difficult because you have to be careful which lay you way and which way you bend. you can knock the bag off. Also, have the guy lay on top of you, is a very hard thing to do. You never know if the clip will come off the bag either. It really is a “messy” situation. It’s extremely hard to find a good position.”- Anonymous four

Some people express feeling ashamed of their medical equipment or embarrassed, others are indifferent and view it simply as an extension of themselves. But just as you may have to experiment with different positions for physical mobility challenges, you may also have to experiment with positions which accommodate for your medical equipment. Ultimately it’s going to be trial and error; The solution may not ‘come’ over night, and at times it may be frustrating or down right painful. But perseverance is key, and you may even have a little fun along the way.

Sex when you have an illness or disability can be more challenging than if you were to be ‘able bodied’. But with increased education, awareness and the knowledge that we have a right to enjoy a fulfilling and satisfying sex life, we can find that, like so many other things, we have the ability to find a way around it, and have a lot of fun along the way.

 And hopefully not get our dicks stuck in a beer can.

The pursuit of happiness


“So, this is my life. And I want you to know that I am both happy and sad at the same time, and I am still trying to work out how that could be”- Stephen Chbosky 

duckling

When I was fifteen, I had a pet duck named Jerry. Twelve hours later he was dead. The cause of death? Drowning.

These are the moments that define my life; It isn’t being accepted into nursing, or travelling overseas, or learning to walk again. It’s the drowning of my duck. And the day that my brother got stuck in a chicken wire rabbit hutch and I had to hose him out. Or getting t boned in a Safeway car park on Christmas Eve by an elderly man who flatly denied he had actually driven into me, despite the fact that his Toyota Camry was still firmly wedged into my back left door.

I’m not one to view the glass as half empty; in fact, if you were to ask anyone, they would likely tell you that I think my glass is more full and more fabulous than yours could ever be, regardless of whether I had a glass left or not (And it may or may not have a drowned duck in there).  I’m simply beginning to realise the importance of acknowledging mediocre days.

mediocre

You know the kind; the days where nothing terrible happens, but nothing overly wonderful happens either. ‘No, my family and golden retriever weren’t killed in a freak silo accident, but I didn’t win the lotto and fall in love either’. You feel ordinary, but you really have no real reason to complain, or account for the fact that you don’t feel great, so you just have to sit there feeling pathetically mediocre.

Recently I have been reading a book called ‘The Happiness Trap’. It’s like one of those horrendously cheesy self help books which you find in between ‘The dummies guide to telemarketing’ and ‘What to expect now your body is changing; a guide to puberty’. Except, it’s not really a self help book.

facebook funny

Because it doesn’t promise to teach you how to become the next Miranda Kerr, or how to leave your job and become a Saint Bernard Breeder, or to appreciate that yes he really IS that into you, he just doesn’t return your calls or actually know your name or understand why you are standing in his office. All you need to do is log onto your Facebook, Instagram or Twitter to appreciate that we show a serious level of commitment to being happy, or at the very least appearing to be happy to everyone around us.

When was the last time that you updated your status to inform everyone that you were stood up on a date, or uploaded a photo of the holiday from hell where you spent new years eve sitting on a toilet with bali belly? Or when did you last tweet your favourite actress to thank them for making you feel horrendously inferior, or sent a shout out to the ex that broke your heart?

Chances are? You haven’t.

We like being happy. Why? For the very same reason that you eat ferrero rochere icream straight out of the tub; it feels good. But perhaps even more so; it is seemingly expected of us to be happy. We are forever being reminded that we should feel grateful, blessed, inspired and empowered. We aren’t starving to death in Sudan, or fleeing conflict in Syria. We live in a world in which McDonalds is open 24 hours for our convenience,  and Education is a right, not a privilege.

We are the most connected, educated and wealthy generation to date.

So why aren’t we happy?

tablets

I have spent the past seven years utterly convinced that if I could just go into remission, just stumble across the magic cure, I would be happy. And who wouldn’t be happy with that? Six months ago I learnt that there would be no cure for me, such is the beauty of genetic disorders. In that instant, the images of running around the local lake and not beginning my mornings retching into the sink disappeared. But I didn’t feel any less happy, just as I didn’t feel any less sad.

We are taught that happiness is a destination; all the magazines, books, television shows and forum pages scream their solutions at us. All you need to do is flick through the latest Marie Claire to learn that happiness can be found in five simple steps.

‘The Happiness Trap’ challenges this idea. In the words of one of the oldest clichés; it’s a journey, not a destination. And like all feelings it comes, and it goes. And it comes back again once more, and so on the cycle continues. But the more we believe that we can achieve it, a permanent state of bliss, the more we set ourselves up for bitter disappointment.

For the longest time I had myself convinced that I was so close. If I just finished high school. If I just got accepted into nursing. If I just began working.  If I just fell in love. If I just had higher cheekbones. If my scans were just a little clearer, then happiness would smack me in the face like a Saint Bernard puppy on Ketamine. There were so many justs. And yet, in the same breath people offended me. ‘How can you be happy? You’re sick’ they would say with pointed tongues (To which I typically responded by pointing out that they were total fucking muppets and they managed alright themselves).

Everyone says ‘As long as you have your health, nothing else matters’. But it’s not true. I don’t have my health, and plenty of things matter to me, like the fact that I am volunteering in a Thai orphanage next year, or that I plan to study my post grad in the UK, specialising in Paediatric Intensive Care. Or my family, who keep me just as mad as they do sane.

happy

We live in a society which values certain things; health, beauty, intelligence and financial wealth. These are the supposed keys to unlock the magic door to the land that is happiness. But over time I have learnt that no such key truly exists; happiness will come and it will go, just as will fear,  disappointment, guilt and excitement. None are dependent on the other, just as none are responsible for the other.

I don’t have my health, and I don’t have a boyfriend. I don’t have millions of dollars and I don’t have a Saint Bernard.

But I do have good days, and I have bad days. And I have mediocre days in-between. And I am happy. And I am sad. And I feel an infinite number of other things. And, like all feelings they will come, and they will go.

And just as sure as the sun will rise, tomorrow they will be back once more.