Insomnia

So I have had insomnia. It makes me a very cranky and very fragile. I can barely keep this shit together. But... usually, every day I laugh. And since most of us suffer with insomnia in cycles I was wondering how I could share that gift of laughter with you.

I am not sure you'll get quite the kick out if it that I do, I actually just spat a mouth full of water over the floor... again.

My kitty Cooper refuses to acknowledge my insomnia and instead has decided to assume the position of head pain the ass and mini terrorist which involves him waking me when I do finally sleep.

This is what he woke me with this morning. 

Sigh, it's a shame he is so flipping cute.

Light

I have often felt like a child hiding in a midnight wardrobe, scrunched in the corner desperate for the safety of light. It has been a long and increasingly treacherous decade and the universe has seen fit to challenge me incessantly.

But something lovely and sweet has happened in the last year that has made me feel like a belatedly commended soldier. The light has found me more often, bathing me in the gorgeous safe warmth of hope. It is really easy to drown in the blackness when you are sick and alone, but I want to celebrate the light.

What has been hardest for me with this illness, aside from the obvious death defying struggles, is the lack of understanding. Especially from those you love. Lack of empathy from family cuts close. Some have always understood it, but some have criticised and mocked me, thinking they are doling out tough love but unintentionally being cruel. However in the last year it is as though my suffering has become more visible and in their eyes less transient.

My Ma, from the first camp, bought me a new second-hand bed – barely used, ensemble, firm lush, dreamy. I had been trying to sleep on a – although gorgeous Tasmanian Oak – slat bed that until about a year ago kept falling apart, and then my brother fixed it, but the mattress was cheap when I bought it and it was ten years old, which we all know is thirty years old in ME years.

My sister, also from the first camp, bought me a portable reverse-cycle air-conditioner, which has also improved my quality of life immeasurably. This house is like an oven in the sticky Brisbane Summers – or Springs – and like a freezer in Winter – or Autumn since our seasons have now become two. There is nothing worse for us than being so exhausted and unable to sleep because you can not moderate your body temperature.

My lovely Aunty and Uncle, also first campers, have just generously bought me the computer on which I am now typing this, the computer I was using is older than my infection and it is weaker than me. With the combination of my failing cognitive functions, its unreliability and moodiness, just connecting online sometimes was more than my brain could manage.

I have a truckload of siblings, so this may get confusing, but another sister has helped me by giving me financial support to seek treatment that I otherwise could not afford. We've not had much luck from all of it, but to have the chance to seek any treatment is empowering. Then another sister has really kindly donated me her couches, which are beautiful and luxurious and comfortable. I spend almost as much time on the couch as I do in bed, it is like a day bed, covered in pillows and sheets, and before I was on an old and very uncomfortable couch.

Which brings me to my online besties. And had you told me a few years ago I could find best friends online, I would've thought it crazy, but a bond forged through struggle in darkness is stronger than those forged in light. I have found online this whispery spider-web of illness, with each offshoot catching more love and friendship and understanding. And on days when I think I might drown, they are my life guards, without them I would surely sink.

Of my real world friends, which inversely feels sometimes like the alien world, some have simply disappeared into the shadows, but others have stepped forward, stepped up, loved me more. And honestly, I already knew who I could count on, but it makes my heart hurt with the overflow of love that they're still here beside me when it matters most.

And lastly and most importantly, strangers. Strangers are who changed everything for me. Beautiful generous, sweet strangers. I made a friend down the street who is also sick and she is a Mum, and she barely knew me, but she came to see me one day when my body seemed committed to death, and she saw me and decided to fight for me. This makes me cry every time I think about her, she changed everything. She contacted the charity Communify who then committed to get me a cleaner – I had been on the government waiting list for a year – they also got me a second-hand dishwasher through Givit and had it installed at no cost to me. A stranger stood up and fought for me and with just her voice, things changed. My quality of life vastly improved, Communify put a railing on the stairs to give me something to hang onto, they put a grab bar in the bath so I wouldn't fall.

Extraordinarily the second is a stranger, a woman who is also ill, who has a disabled daughter, she and I have been meeting in the waiting room at the doctors for the last decade and she has been able to measure my decline in weekly increments. She brings me medication she finds useful, things I would not be able to afford, she is outrageously generous.

It seems my invisibility cloak is slipping, my corner spot in the wardrobe is growing cold, and the slither of light grows. I cannot wait to throw the door open and step out, and maybe then I can be the voice of a stranger for someone else.

Death

When I sleep tonight, curled up in bed, wracked with pain, weak and defeated, I will huddle under a blanket of Death.  I am lucky in this present, that there are several layers between me and Death so its scratchy coldness does not rub abrasively against my skin tormenting my dreams with its false intimacy.  But in the early morning hours, when my subconscious is untethered I sometimes hear Death whispering sweet nothings, beckoning me elsewhere.  And one day I fear I will wake swaddled in Death, too weak to unwrap myself. 

Death is such a distant prospect for most people.  It is an idea, an imagined place, a remote destination.  I think it must be hard for healthy folk to understand what it is to be stalked relentlessly by Death.  To know that in the moments when you have not heard from it, you are being watched, chased from afar.  And then the distance closes and Death becomes bolder, aggressive, and ever present. 

We do not speak of it often; we don’t think you will believe us.  But we feel it, the membrane of protection between us and Death is woefully thin.  Sometimes it thickens like scar tissue on leathered skin, but mostly it is a miniscule layer that is permeated by tormenting forces – virus upon virus, bacterial infections, excruciating pain signals, cognitive dysfunction, spasming muscles, and neural symptoms – and sometimes all at once.

Today we lost a CFS warrior, a bright star, a creative mind, an intuitive soul.  I do not know yet if she died from our illness or complications from it, but either way we all know it will not be classified as caused by CFS or ME.

She has reinforced my belief that we must not go quietly into the night.  That we should give voice to the truth, that Death is ever present, that for those of us who are very ill, we visit with Death often, sometimes stoically fending it off, other times doing our best to just ignore it.   Sometimes we even manage to put a little distance between us, but in quiet moments of joy, we remember Death will come hurtling back just as soon as we stop being careful.

So for those skeptics who torment us, you cannot die of hypochondria, perhaps you need to challenge your belief system.  For the scientists who debate and play political games, we do not give a shit which one of you is right, all we care about is trying to have a future that doesn’t involve sleeping with Death every day.  And for sanctimonious, self satisfied students who take joy in finding fault in the work of others, you have every right to make a point, but you do not need to be vindictive to do it.  I want the truth, I don’t want a fairytale, I’m a big girl, for f*%k’s sake I battle Death every day, but don’t be an asshole when we are all slowly dying.

Doctor Danger

I have always had this really strong sense of morality, of right and wrong, so much so I feel ill if I do something that goes against what I believe to be good or appropriate behaviour.  If I have a heated argument with someone, or snap at them because I’m in a bad mood I will always apologise almost immediately and take responsibility for my role in the situation.  That being said, I am no saint and there are many moments in my life I am not proud of.

But as a rule, generally, you want me on your side.  I will stand up to the bully, I will face off with the aggressor, I will protect those I love, or even those who simply need an ally.  So as I watch my community of friends trying to live with this awful condition (CFS/ME) while being discriminated against, I become increasingly furious at how unjust it all is.  Truly it overwhelms me.

In Australia, we are eligible for the disability pension, (as we should be, many of us are house or even bed bound) and yet we cannot access disability support services.  We can get access to transport, but only if we say that the medical treatment we need transport for is not related to our illness.  We are dismissed as hypochondriacs, and yet we die off in numbers that are not documented because our deaths are reclassified as something else.  We commit suicide because no one listens, the pain is too much, the invisibility too great and the frustration too intense.

What scares me more than all of that; is the abuse of power by doctors.  Some years ago I flirted enthusiastically with death after contracting viral pneumonia, I was hospitalised for a week by a lovely respiratory specialist, but not before an ignorant doctor in emergency told me that I was wasting his time, that he could do nothing for me, that I should just go home and not bother coming back.  Thankfully I ignored him; returned the next morning to see the specialist only to be admitted immediately, having to be monitored every half hour for that week, until eventually I had improved enough to be discharged.  But what about someone who wasn’t as strong as me, what if they didn’t have the balls to ignore the doctor and fight back?  What would have become of them?

There are so many stories like this, of close scrapes, of feeling organs shut down, feeling your heart strain from simply moving, of having to crawl because you cannot walk to the bathroom, of going days without showers, of returning repeatedly to the emergency room suffering with excruciating pain and illness, only to be admitted to psychiatric wards.  All over the world there are stories of people who suffer with this illness, but because we do not fit in the neat little boxes designed to make doctors feel smart and safe, we are treated like hypochondriacs.

Imagine having HIV before anyone knew what it was.  Imagine feeling this rotten wrong thing wrapping tendrils round your system.  Imagine going to the hospital, telling them your diagnosis and watching their body language change and their tone lower to condescension.  You know it’s biological, you know it is not psychosomatic, you know there is something rotten inside you, but they just look at you dismissively and talk quietly with the nurse about discharging you with some paracetamol.  As you become more outraged at their treatment of you, you are so ill, so tired, in so much pain, you cry and raise your voice in frustration.  They nod to you and steal glances with each other, you are only reinforcing their belief it’s all in your head.  Can you imagine living like that?  Needing help and treatment, yet unable to seek it for fear you will be intentionally misinterpreted and maligned?

That is what it is to have our diagnosis.  That is why we say we would rather have Cancer or HIV or other politically incorrect things.  Not because we don’t understand the gravity of those illnesses, having experienced what we have we would never doubt nor underestimate the suffering of others.  No it is because those illnesses have treatment, awareness, options, research, support, and statistics on survival or death.  People look at me incredulously when I say I would rather have most any other life threatening illness.  But if you were to walk in my shoes, you would understand.  There is no certainty, but I can fight against that; there is no treatment, but I can pray for one, but to have people treat you like a hypochondriac while you suffer so much quietly against all hope… that is too much.  I would rather know the likelihood of my death, than to have to fight not only this insidious illness, but with the very people who have been entrusted with the job of treating me, and yet instead they shake their heads and dismiss my suffering because I refuse to fit into their neat little boxes.  And the irony of all ironies, those few brave doctors that risk treating us, specialising in the treatment of our illness, face the same treatment metered out to us by their colleagues.  They too are ridiculed and scoffed at.  The rare doctor that can think laterally and outside the box is the one that can treat this enigma, but few risk ruining their career by doing it.

A quote from, Dr. Nancy G. Klimas, who is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center. 

“My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

Source: http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

Dr. Mark Loveless, head of the AIDS and Chronic Fatigue Syndrome Clinic at Oregon Health Sciences University, in 1995 testimony at a congressional briefing, noted that a "Chronic Fatigue Syndrome patient feels effectively the same every day as an AIDS patient feels two months before death."

Article Source: http://EzineArticles.com/3660627

Crazy Cat Lady

It was innate in me, the predetermination of my fate as a mother.  I was never one of those people that planned to be married and have a child by a certain age, but I always knew I would have children at some point.  So this last birthday, yesterday in fact, was particularly bleak.  Because now I have had to face the reality that I will not be a mother, that I will not nurture and raise my own child or any child. 

I am thirty-four, which again, has never bothered me.  Age didn’t really worry me, but looking at it refracted though the lense of illness, is different.  Each year is another nail in the coffin of motherhood.  And this year, it has been inescapably dark. 

Throw most anything at me, and I’ll keep getting up, keep fighting, but the realisation that I will never hold that role has near obliterated me.  So much so I have found it hard to even admit to myself out loud, for fear I might sink never to get up again.  It is not that I am without hope that I will ever get better, but at my age with the combining factors of Endometriosis and PCOS it would have been a battle anyway.  Then just recently I had this revelation,  I have always known that short of finding a brilliant partner to support me, that it would be impossible while I am sick to even consider mothering a child, but then I realised that there was a good chance, if current research is correct, that I could pass on this insidious beast to my child.  And there is no way I can gamble on that. Ironically the fierce protective mother in me won’t let me be one.

  

But I am a Ma to two fur babies.  And as much as I used to take the piss out of obsessive pet owners with their stupid pet clothing and accessories and toys, I’ve now become one.  I draw the line at clothing, but toys and furniture, I’m all for it, because without my two fur babies, this blow would be too much.

So my adoration for them has increased if that is even possible, and my heart sometimes feels like it might burst because it just cannot fit all that love in there.  In moments when things are at their worst, when I cannot move but cannot sleep, I put my ear to the bed and Tobey’s purr reverberates through my head and I listen to his sighing breathing and it puts me to sleep.  Then when I toss and turn, Cooper lifts his head off his front paws and chats to me, berating me until I lift the doona so he can crawl under and curl into a tight little ball against my chest literally protecting my heart.

They make me smile every day, and laugh and yell, and without them I would be terribly alone.  So in future when I hear someone talk about their pet as though it is their child, I will nod my head in understanding.  It is not so silly after all.  Maybe the crazy cat lady isn't so crazy.

Truth

The truth, it can be uncomfortable and confronting.  It is certainly not what we want to face constantly.  Most of us think we're unflinchingly honest, but really we hide the truth away behind hair dye, manicures, makeup, spray tans, expensive clothes.  Or even without those every day rituals we take for granted as routine, we hide the truth with little white lies, to ourselves, to others.  We don’t even realise we do it and we don’t mean anything malicious by it, it’s just the way we get by.

I’ve always been honest, truthful, genuine, and authentic.  Or at least I was mostly.  I functioned within the normal societal expectations of ‘spin’, hiding the truth a little behind the façade of a beauty regime, behind tact. 

So imagine being stripped of those pretenses, imagine having to confront the stripped back you every day.  Imagine being so sick that even a shower can be too hard some days, so you certainly can’t manage makeup, spray tans, manicures, expensive clothes or some times even brushing your hair.  Even the most secure in their skin would find it particularly daunting to age and put on weight, lose muscle tone and grow unearned wrinkles.

Every day those of us with CFS/ME face this and those of us who contracted it severely and early, also face the likelihood of a future without children, without a partner, without security or a home, mostly alone and without independence.  That is a lot to face every day, through pain, exhaustion and illness.

So when I write, I try to write my truth.  To give voice to what it is to live with this illness.  But before I got sick, before I suffered for years on end, before I watched my future options fade away I could hide from my truth a little bit.  I could make myself feel better with makeup, with a shopping trip, with a girl’s night out.  Now there is no escape from the truth.  And I say this not to garner sympathy, but in the hope I’ll make you understand that I don’t mean to confront you with a bleakness that is too much.  I don’t want to scare you away with my truth.  But I do want you to understand that with constant suffering comes desensitization and we have become so used to facing the ugly reality every day that we don’t hide from the truth, we don’t shy away from it and we certainly can’t escape it. 

So when I write of the bleakness and the darkness, it is the truth, but just know there is some lightness in there.  There are days when I laugh, days when the pain is a little less and days when I can stand or walk without falling over.  They are not often, but they are there.  And above all else, mostly I am okay.  We are okay.  It may not be pretty, but I’m still kicking on. 

Power

Just under my heart in the middle of my torso was the organ that controlled my power.  Now there is this gaping hole as though someone punched a fist through me.  And every now and then my breath stutters and catches as though it can not quite make the jump across the empty space.

At first I thought my power organ was malfunctioning, I felt so weak.  But then I realised it was gone and since I didn’t wake up in an ice bath with a note saying it was missing…. and I didn’t donate it, someone must’ve stolen it.

When you have the ability to generate power, you take it for granted.  It is not until you feel powerless that you realise the huge loss.  You get power from little things, from working or studying and feeling useful, from making decisions for yourself, no matter how small, from feeling beautiful, or at least deciding to do something about it when you don’t, from being self-reliant, completely independent and from being you, being who you are meant to be whatever that is.

If you are chronically ill, those power sources are no longer an option.  And in fact you deplete your power in much bigger increments, because you are completely reliant on others, to clean, to change your bed, to shop, to go to the doctor, sometimes even to bathe.  When you cannot choose to simply get up and make breakfast, when you hurt yourself making toast, you lose a lot of that sense of power.

I bleed power; it seeps from me in an ever-flowing torrent.  No more can I work or study to feel useful and powerful.  No more can I exercise, get my hair cut and dyed, or even apply makeup to feel beautiful.  No more can I look after myself, do anything without consulting somebody and developing a strategic plan to achieve the smallest goal.  And no more do I feel like me, because I am trapped inside, kept hostage, diluted and whispering from eons away.  I can barely remember me.

So I am looking for a power organ donor.  I’m not sure I’ll make it without one.