Touch me

Published November 18, 2018 by 51percentawesome

I really need to be held.

I went from being a person who a day without a cuddle was sad, and a week without was agony. I went from chasing after deep, athletic intimacy, to laying here by myself. A hello and goodbye cuddle every few weeks. A detangle and brush of my hair every few days. An occasional fist bump. Scraps that get me through.

I went from chasing the sun as it went down, writing it winter love poems, and running to the ocean, to laying here with these four walls. To start with I squirmed and wanted to get out, but I suppose I adapted.

I know I miss the sky, because when I saw the stars last month I cried. When the wind touched my face, I cried. And when someone who felt familiar stood in my room across the bed from me, I wanted to beg them to get in, and touch me.

Thank god for my cat, I guess. My cat who purrs harder when I squeeze him tighter and needs to be in my personal space laying on my face.

And your crumbs of loving. No longer get me by…

Christmas and my 31st birthday are coming. I’m frightened of how it’s going to feel—the loneliness, which, apart from brief tears in my chest that rip open like breaks in time and space, I seem to be handing fine.

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Feelings

Published October 26, 2018 by 51percentawesome

Coping okay, shut down. Fairly alone, just with cat. Alone because need to rest to get better. Shut down because alone.

Then, Sparkly. Friendly. Kind. Warm. Grounded. Strong brown arms, soothing voice.

Hope. Opens me up like a blossoming lotus flower.

Reading that everyone needs a few secure attachment figures to turn to when things get hard, and that without them, we tend to shut down to cope.

Out comes pouring everything unfulfilled. Ache.

To be seen and felt. Human touch. To be kissed. To be held. To share.

To enjoy big things together, rather than small things alone.

Hope that I’ll get better, that I’ll be able to have what I need to be fulfilled. Not just alive and coping, but full and blossoming.

That’s a lot of feelings in response to one person.

Yearnings that once unboxed, can’t be put back in.

I am touched so rarely, so seldom compared to how I was before. Now, every day or three a carer unmatts and untangles my hair. A friend visits and hugs me goodbye every few weeks.

I want more.

Remembering that I have Murph cat, my main #1 man. I’ve been making do with his beautiful cuddles.

… I don’t even want to write the rest.

Hope turns into moving turns into talking turns into pain and spasms and insomnia. Smack straight into restrictions.

The disappointment makes my chin tremble and eyes leak. It’s too big to even explain.

~~

this again

Published September 20, 2018 by 51percentawesome

I used to be so private, I wouldn’t want someone to know when I was pooing. Now strangers empty my portaloo and handle my ‘sex toys’ with gloves.

Yesterday I laughed hysterically because I have to vacate my house in 1.5 weeks and don’t know where I’m going, and my wardrobe keeps falling over, now its duct taped, wonky, all ridiculous. I forgot I could laugh like that.

Today when I woke up and yawn stretched like I do every day, my neck went into spasms, along with my belly and back. I remembered why I don’t laugh.

Yesterday I read that Jung got knocked unconscious and thought to himself ‘now I won’t have to go to school’, then spent 6 months fainting every time he did school work, until he decided not to. And that, he declares, it what a neurosis is. [Shared thanks to Jordan Peterson, who I’ve now set to snooze].

Is this a neurosis? Am I somehow avoiding life? When I think of life I feel so fucking weary, but I don’t think I felt like that before, before the crushing fatigue, pain, spasms, before the torture started hitting me every time I did something.

When people talk about the ‘payoff’ of being ill, like disability pensions or people preparing your food for you in bed, they don’t talk about the loss of privacy, dignity and independence, strangers constantly in your space…. or the trade off. Surely a cost benefit analysis doesn’t weigh up when you’re losing dancing, sex, chocolate, friends, sunshine, gardening, chickens, swimming, partners, muscle tone and a tan, make up and dressing up (or even wearing clothes at all), travel, family, baths and hair washing… which leads me to conclude that either my subconscious is self-destructive and or dumb, or those people just haven’t thought it through.

If I’m honest though, I was tired, heart broken, at a loss, and overwhelmed. I’m just not sure how much of that was because my body just…. couldn’t. I honestly don’t know how much of this complete shut down is like, some failure of infant attachment, some internalised trauma trapped in me, or withdrawal from life….

And I know I’m not supposed to say that, within patient communities who shun it as the antichrist due to decades of stigma and medical abuse, or to doctors and psychologists who will be responsible for writing the reports which make sure I have food and a house and help, or to the friends and family who are bewildered enough by this afflication that took away Angela, the one who wasn’t missing from their lives. Even if I did say it, and when I have, it hasn’t changed anything anyway, just sent me down a spiral of shame, engulfed me in a sense of failure, and made me wary of doubt in the eyes of those I depend on.

So it just sits inside me like this little lump of black coal, this worry. And it crops up whenever Jung or whoever else starts sprouting their opinion on how it’s mind over matter; it crawls out and eats up any remaining sense of self I had, that I am managing well, that I am a worthwhile human being despite difficult circumstances.

And so yesterday I laughed hysterically at how difficult and frustrating things are right now, laughed because I’m terrified but I’m breathing and stronger in my sense that I can face this and survive.

And now today the spasms, one tiny wrong move and they start again. Random twitching and cramping. Constant low level discomfort, to be carefully managed less it escalate. I’m uncomfortable and I don’t know why I would do this to myself, and I don’t understand what this could possibly mean.

I do know that the small twitch muscles that stabilise the spine (and core) are aerobic, their control is neurological, and they’re dependant on calcium, whose transfer is found to be disturbed in ME/CFS (related to threat receptors from stress or chemical triggers) and that these muscles are more dependant on mitochondria.

So it makes sense that when I try to use them, when I go above my aerobic threshold, when I get stressed, that this happens, if ME/CFS is an illness which is neuroimmune that affects calcium and mitochondria and aerobic metabolism. At least, it seems to, according to some researchers.

Having a medically unexplained illness leaves the door open to becoming stuck in the denial and bargaining of grief. If I had cancer, I still wouldn’t know WHY it happened, but I would at least know WHAT was happening. Here, I am without either explanation, and if I’m not careful, in comes the

crippling self doubt

How are you feeling

Published September 7, 2018 by 51percentawesome

After a year here, I’m leaving this house without having been able to enjoy and experience it. I didn’t have much left to lose but for the first time in a while, the illness feels real. Something new to miss out on, that I can’t get back.

I feel alienated. Others can’t relate to me, I’m struggling to relate to myself. I feel my aloneness, in the face of deep undercurrents.

I don’t see mirrors much these days but when I do I seem sad and old. I feel heavy and sometimes I notice the corners of my mouth pulling downwards. I don’t look pretty anymore. I’m concerned I’ll become bitter from grief and disappointment and a lack of love and joy.

I don’t know how to fix it.

Life anchor, four paws holding me here.

Q’est-ce….

Published November 5, 2017 by 51percentawesome

I remember in 2013 laying awake in my shipping container and feeling *not okay*. Getting in my car to drive to a friends so he would cook me food and I could eat, cry and sleep.

I remember in 2014 going to cry to empty and cleanse my heart, and finding I could breathe, or cry, but I couldn’t do both.

I remember walking two, or maybe three steps and then waiting, for the boy behind me to get close enough to push. Sleeping downstairs so I didn’t have to walk up.

I remember when the muscle spasms started, I remember the mindless fatigue and endless scrolling in one armchair, too tired to cook and eat. Happily laying and staring at the wall. I remember driving and being unable to comprehend roadwork signage, my eyes blurry and my brain confused.

Skip ahead and I remember sleeping and sleeping and sleeping. Nausea in the shower and in the sun.

I remember walking to the toilet and laying on the floor, too tired to walk back. I remember inexplicably falling down the stairs two mornings in a row, grazing my arm. I remember the panic of being unable to name the suburb we lived in, or picture our house.

It’s been 13 months since I was able to walk. 5 months since I last crawled. My calves sit flat against the bone, my hips hollow inwards where muscles were.

And throughout it all
What is happening to me
And
How do I make it better.

Over and over and over.

What is this. How do I… Maybe I can… Maybe I should have… Why is this happening. How do I…

I live in hope and faith in my heart. My intention and purpose is to heal. To walk and swim and dance and have sex.

But sometimes. When I lay on my side and my body goes into spasms from the effort of holding me up and I consider the possibility of becoming too weak to lay on my side. when I have to hang new curtains because the light is searing into my brain, a symptom I thought I’d left behind,

I’m frightened.

tether

Published March 6, 2017 by 51percentawesome

‘trust me…. you got this’

Trust in a higher power, trust in divinity, trust in interconnectedness. Trust you are loved. Trust you will not be given more than you can handle. Trust that in your time of need, you will not be forsaken, and in the darkest, most exhausted hours, when you can no longer walk yourself… you will be carried.

eyes leaking. unable to cry all the tears lest left gasping for air.

fear to walk through the unspeakable. to reach the darkest part. to use your last reserve. and then go further.

to speak and not be heard.

to suffer and have it misunderstood.

to be dismissed, ignored, argued with, blamed.

to be left alone in the time of need.

to be exhausted and have more demanded.

to find no safe refuge in which to rest.

to have unremitting pain beyond what is bearable.

to be left alone and powerless in the face of unspeakable grief, without comfort

to never find rest, to be stuck in perpetual exhaustion and struggle, without place.

to be unable.

to have pain with no relief.

the relief will come.
this too shall pass.

All bets are off

Published August 8, 2016 by 51percentawesome

 

I hear that when AIDS first happened, doctors didn’t know what was happened and assumed it was psychosomatic. Until people died, and they found a biomarker.

The problem with chronic fatigue is that you don’t die. With no disrespect intended to those with terminal illness, at least you know that the pain and restriction will end- usually you’ll either die, or you’ll recover.

Quality of life for people with chronic fatigue is worse than those on kidney dialysis or with cancer (study).The suicide rate is six or seven times the rest of the population.

I can move my arms, my legs, I can talk and laugh and dance and sing and do my own shopping and cooking and showering.

But for every 30 second block of activity, I will pay. With instant heavy limbs, dizziness, breathlessness. With sound and light sensitivity that makes the smallest rustle spread pain through my body like an electric shock. I will whimper as my arms and legs tremble, as suddenly I’m spent, as my gland swell, my arm pits ache, and the touch of material on my skin overwhelms me. I will lay awake, exhausted but unable to sleep, yearning to escape the nightmare that becomes my body. Exhaustion that goes on and on and on.

So I sit up slowly. I stop moving my arms, gesturing, dancing in the car. I stay away from people I don’t know, text instead of phone call. I weigh it up before I reach for things, before I move. I hold onto my pee. I rest my body on doorways, my head on couches, I sit on the floor. I stay in bed. My partner carries me to the toilet to maximise the energy I’ll have left for talking and eating, and extend the reach of the day. I only eat soft foods so my jaw doesn’t ache. I mininise sex and try not to move too much. Mininise, maximise. Careful with those spoons. If I manage it carefully, I won’t go into meltdown.

No playing with puppies. Swimming. Hot baths and showers, laying in the sun. Staying up late. Eating out for dinner. Walking on the beach. Driving. Chopping vegetables. Using my arms to pat the cat. Watering the garden.

 

Not it if I want to make it through the day.