Posted in Accepting ME

Time Heals All?


We’ve all heard the phrase “Time heals all wounds”. Whether these words have been said to us or by us, we’ve heard of this mysterious clock, the one that ticks by effortlessly, healing every wound and scar.

For most, the clock is never found, the wounds never fully heal and the scars are reminders of the past, the one we’ve managed to survive.

Living with Myalgic Encephalomyelitis (ME) I hear many references to this clock:

“The hot weather of the summer will help you”

“Another year and you’ll be better”

and the most famous

“Give it time and you’ll be back to good health”

I gave up on time a long time ago. I had to in order to survive, in order to make sense of this new life, in order to enjoy my new life.

I put the past away and began living in the now, knowing this is the only moment that matters.

I accepted the unknown, accepted I may never meet my past life or self again and accepted the changes and alterations to my life. Accepted ME may be a forever presence and if so, that’s okay.

Since doing this, I’m living my way, living in the good days, all be they limited as to what I was once capable of doing,  I’m still living.

And so it irks me when mindless comments such as “Give it time” and “Another year…” are said to me. Such words belittle my existence, their utterance attempts at stating my current life is somehow inadequate. When I know it’s not.

There’s no need for mysterious clocks here, especially when each day begins with a fresh new sunrise and the opportunity to watch the changing seasons and patterns of life within my garden and surrounding countryside.

Perhaps there is a need for those who utter such phrases to accept my life doesn’t need their clocks?

 

http://www.mariehcurran.com

Posted in Accepting ME

A Midsummer Night’s Dream, almost


It’s been a busy summer, one house martin nest is complete on my gable end and having noticed the decline in activity within the nest of starlings in nextdoor’s eves, I can only assume the chicks have fledged. Or rather, hope.

A set of crows were chased off by the starling parents recently, their beaks optimistic for some chicks for their own feasting brood. As for the magpie nest within the ash tree to my west, that has undergone an impressive extension. Mostly made from the boughs of hawthorn trees.

No matter what window I peer from or what angle I amble within my garden, life is plentiful. Nature working overtime.

Busy not only appears to be an adjective confined to my garden this summer. Out there, out in the ME world, a lot of murmuring’s and chattering’s are expanding.

On June 6th a fantastic article penned by Sean O’Briain and entitled “Living with one of the last major diseases we know nothing about’ was published in the journal.ie and can be viewed here. And today I read this wonderful piece by Cort Johnson, debunking further the highly flawed PACE Trial. To quote the article:

the latest and perhaps most devastating blow to the PACE trial yet – an open critique from Rebecca Goldin, the director of Stats.org, and Professor of Mathematical Sciences at George Mason University. Goldin’s entry into the debate indicates that the PACE trial controversy is now bigger than ME/CFS; that it’s being held up and examined in the medical community as a case study of a major research effort gone wrong.

“Dramatic” alterations in recovery criteria as the trial was underway made it easier for the authors to label the patients as “recovered”. Goldin cited the now notorious alteration which made it possible for patients to meet the criteria for ME/CFS and be classified as recovered from it at the same time.

And to think midsummer’s night has yet to arrive!

http://www.mariehcurran.com

 

Posted in Accepting ME

Naked Living


When I first got sick I fought to remain in work.

My hobbies had disappeared, evaporating like some rain puddle in spring. My social life took a plunge and my ridiculous pride at keeping a tidy home lay strewn across my kitchen floor.

Every label I had once allowed myself to own was lost. Every label bar one, Employee. And my gosh I fought to keep it, I fought for months.

This society of ours is constantly trying to mould us. There are adverts telling us the products we should buy, pictures showing us what we should look like and then there are the labels. Post its that define us. Wife, sister, runner, employee, home owner, an endless list of nouns supposed to prove who I am.

I clung to that last remaining label, employee, until my brain was floored, my body beyond broken and the tank beyond empty. I no longer had the choice to push and get sicker, I was done for. It was time to throw my hands up in defeat.

Doing so wasn’t easy. My husband and I have a mortgage to pay, we are in the middle of a recession but the biggest challenge I faced was losing that last label, my last link to my past. It was as if the world was suddenly throwing down its binoculars. I had nothing left to offer it. It was done with me.

The labels passed through life’s shredder. Everything was gone.

Yet, standing naked in front of my mirror of truth I realised this string of words I’d used to define me, could in fact be used to describe millions of people. The post its I’d spent my life accumulating meant nothing.

They were simply a string of random words my life had chanced upon, they weren’t me. They didn’t define me, they didn’t even try to describe who I am.

I knew the outside world looking in thought I was an ME patient, cut off from her past. But what did I think? After all, what everyone thinks really doesn’t matter. At the end of each day it’s me I lie beside in bed, it’s me who must confess and question “did I live today as me?”

So having ditched the labels I’ve since refused to be labelled. Sure the world can label me, they can call me as they wish but I don’t have to accept those labels. Just as I don’t buy into marketing campaigns or dress sizes or fad diets.

Living can be as complicated as we make it. Luckily I need simplicity in my life and so living to me is breathing.

Breathing in the sunlight, the birds, the trees, the fields. Watching the colours change as each season falls in. Smelling summer rain, touching winter snow, standing under budding trees of spring and watching autumn sunsets closing in.

We humans can be incredibly egotistical! To think I had to get sick to realise just how small of a paper clip I am in this vast, vast universe.

As for that question, who am I? I’m a woman in love with life, in love with people, in love with nature. I’m acutely aware of my tiny microscopic footprint, a print that will someday be left behind, hidden in the long grasses of this earth.

Posted in Accepting ME

Being an Introverted Socialite


This weekend was a busy one. My husband was in need of an updated wardrobe, our car was in need of new tyres, our cupboards in need of filling and then there was a wedding. For any healthy individual, all of the above is a mundane list of to dos with the addition of a fun social outing capping off a well deserved active, weekend.

For me, it required careful planning and acknowledging my limitations.

Waking on Friday morning shortly after 10am, having slept for over twelve hours, I dressed the top half of my body and ate breakfast. Climbing back under the covers I meditated before getting up for a second time, half an hour later, finishing dressing myself and washing my teeth.

My husband then bounced from bed and ran about our home readying himself while I sat at our kitchen table. Climbing into the car, the radio was turned off, as is always done when I’m present and my husband was instructed to travel the 40 minute drive in silence. Sitting, meditating, deep breathing, I was adamant to save every ounce of energy in order to return home somewhat unscathed.

Reaching the car garage I sat while we waited on our driver to drop us into the city centre. There, we went to the nearest restaurant where I fed my body a salad and hydrated it. Hoping if I played nice it too would play nice. Afterward, I climbed a hill, my husband called it a slight incline, to me it was a hill. At the top we crossed a street into a clothes shop, where I sought out the bathrooms and sat on a toilet seat for some minutes knowing my husband would take time choosing his outfits. Returning to the shop floor, I encouraged my husband to choose his selection quickly so we could take the escalator downstairs to the fitting rooms, where I knew there was a red poof with my name on it.

While he changed outfits I sat and people watched. Two bags full of clothes later, we left the shop and I sat on some public seating sipping on a juice while my husband ran another errand. Returning he asked if I’d be okay to make it to the nearby bus stop, which I was and to better my effort our bus was waiting. Handing over my free bus pass courtesy of my disability allowance, we took our seats and let the wheels move us toward the car garage and our own car.

During the journey we passed joggers, walkers, other car users, all of whom were in a rush somewhere, most taking their daily chores for granted.

Back in our car my husband completed our food shopping and we soon returned home to the comfort of my couch. A place my body could lie down and rest, recharging after its taxing day.

While I rested and minded my grumpy body, begging myalgic encephalomyelitis to refrain from her antics, my husband focused on the following day and his cousins wedding. A wedding he attended alone (Attending part of the wedding, talking, siting, listening, would have been too draining for me and resulted in a full blown crash).

Instead, I dealt with nausea, pain and increased fatigue throughout Saturday and Sunday, all because I carried out simple chores, tasks I once did without thinking.

http://www.mariehcurran.com

Posted in Accepting ME, GET & Exercising

Yes to GET or no to GET? Part Three


You’re Fired…

Last Friday, I sat in front of my consultant and am now consultantless…again.

However, unlike my other two firings, this one ended amicably.

Kicking off our meeting, I did as I always did, I read my A4 sheets of daily symptoms, only this time boldly added “my final Graded Exercise Therapy was on September 30th and I’ve no intention of returning to it.” After which, I laughed.

While my consultant scratched her head, I explainedhow GET had been flung from the nearest window. Thankfully, she agreed with my pulling the plug and agreed crashes are to be avoided. GET was indeed making me worse, not better. It had to go.

She then dubiously questioned my nightly stretches, asking if I’m still capable of maintaining six to ten minutes, which I am. I don’t wish to exacerbate my muscle wastage and am well aware of the threat of osteoporosis. I’m proud of my ability to do these and she was happy to write something positive on my wrap sheet.

Next, she toyed with other avenues, trying to figure out if there was any form of exercise my body would tolerate but there was nothing and she too laughed at her medical inability to come up with an alternative exercise solution. All her academic accreditations bamboozled by myalgic encephalomyelitis.

Sitting at opposite sides of her large desk we both laughed our asses off at the wonderful enigma that is ME and its intolerance to both exercise and logic.

When the laughter stopped, she looked at me across her desk and fired me.

As she explained, her job was to oversee my GET and as I was no longer following a plan, that left her one job less and me consultant less.

However, our meeting didn’t end there. Knowing she was about to send me out the door one last time, she spoke candidly about my positivity towards my illness and my strength, complimenting me on both. We also discussed my gut instinct and how well I know my body and I then hit her with a second bombshell.

Smiling, I told her “I don’t mind if I never run again. Imagine, I can say that. The person who twenty months ago, was fighting to return to running, thinking my life depended on my hobby!!” Laughing, I continued “I don’t care if I never run again, I can survive without it, I don’t need it. I’m happy.” To which, I added “Of course I’d be happy if it re-entered my life in the future but my happiness doesn’t depend on it.”

After these profound statements she sat back in her chair in silence for a few seconds while I sat grinning like Indiana Jones in the movie instalment The Last Crusade. In his final test toward finding the Holy Grail, he had to take a leap of faith and step off a cliff edge. I’ve taken that step off my ledge, I’ve stepped into the unknown and guess what, a path has come up to meet me. I’m not angry at losing my past, I’m not scared of my illness and I don’t worry about my future. I’m on a path toward my future, heading into the unknown and am excited by it. It won’t be easy, just as the previous two years haven’t been easy but I know I’ll be fine, I know everything will be as it will be.

We then had a further discussion on my acceptance of my illness, acceptance of my limitations and acceptance of the unknown. We discussed my box, i.e. my home and how I manage to live within it, knowing what I can and can’t do, knowing how to pace myself. Calling myself lucky, she looked at me with raised eyebrows and I explained the 25% of patients bed ridden, unable to do anything, would consider my living in my box, winning the lotto. I am indeed lucky and wake every morning knowing so.

Agreeing with my pragmatism, she talked about how I could be a whole lot luckier and we again laughed, as I joked about what it would feel like to be awake for 3/4s of the day as opposed to 1/4. And what it would feel like to only require eight hours sleep, never mind not having to put up with my many daily symptoms and the constant fatigue.

Toward the end of our meeting I told her I’ve no regrets and am happy with my decision to try GET. I needed to try it, I needed it mentally, it was part of my path toward acceptance.

After more laughter at the horribleness of knowing there is nothing more she can do for me, we agreed I will continue pacing and resting and living in my box, maintaining my stretches and meditation.

Then we shook hands for the last time, my last set of A4 pages left idle in my handbag. And for the last time, I read the sign in the waiting area of the clinic, the one that says “sickness brings patience, patience brings perseverance, perseverance brings hope.”

http://www.mariehcurran.com

Posted in Accepting ME

Boxed and Labelled


Whether we like it or not, we spend most of our lives in a box before passing to our final resting place.

We humans love order, placing people in slots, classifying ourselves like old fossil bones in an archaeological dig. During my time on this planet I’ve been in boxes, labelled neatly and categorised.

My stack of past labels includes student, employee, wife, sister, daughter, friend; the list is a never ending boring set of drivel, none of which actually define me.

As a child I was told everyone is unique, we have our set of DNA, our own personality traits, no two people are the exact same, even if their DNA match, which is the case for identical twins. Yet, somewhere along the line, in our growing up phase, the uniqueness losses strength, we become robots, slotting into readymade containers.

Looking at my list above, there are hundreds of thousands of people with the exact same toe tag as me, none of who I am is in any way illustrated by this list; it’s simply a production line of generic words.

I hate the labels, the boxes, the structure but despite my despising them, they have been present my entire life. Moving from the label of student, I became an employee and as the years rolled, more and more labels stacked up. My hobbies were categorised, my likes and dislikes departmentalised.

Then, with the arrival of my friend, myalgic encephalomyelitis, my conveyor belt broke, spewing most labels to the floor, leaving me almost title less.

For a girl who deplores labels I felt naked at first, searching for a category; something other than “patient” or “sick” words I find demeaning. Having been institutionalised my entire life, that built in switch blinked, its subliminal messaging flashing before me, the message saying “in order to be part of the human race, you must be branded”. And then, the switch broke, I stepped free of the chains, walked from the institution and all this silliness ended as I remembered I don’t need the toe tag, to be me.

http://www.mariehcurran.com

Posted in Accepting ME

The Fight Part Two


Before meeting my new consultant, I e-mailed him a list of pointers I wished to discuss, afraid to walk out his door without addressing one of my many concerns.

The e-mail was long, very, very long, at the time I was still pushing myself to work four hours a day and I desperately wanted to discuss this, my reputation was going down the drain, I was falling asleep at my desk, my concentration gone, I was making drastic mistakes and pulling over to sleep on my way home from work. It was taking its toll and I felt my head and body about to explode.

The other topics included diet, GET, pacing, pushing, resting and running. The last line of the mail saying “I want you to use your expertise, make me better, give ME the two fingers and get my life back. I want to be at the starting line of a marathon next year.”

Walking in his door, I expected to discuss my mail and set out a path to my marathon. Instead I sat opposite a man who hadn’t bothered to read my mail, citing its length and his lack of time. Immediately I was deflated, if he hadn’t bothered to read it, why did I bother showing up at his door?

The meeting went from bad to worse, he reminded me running was out for a very long time, chastised me for having run my little race, told me my time frame was years, not months, and lambasted me for even contemplating a marathon in the next few years. Saying it wouldn’t happen. 

I was devastated, the tears rolled, my voice sobbed, this man just blasted all my hopes in a fleeting moment.

I was cross. Every time I tried to talk he talked over me, he refused to listen and pulled out a GET program for me to start, it was a generic program printed before ever meeting me. His plan included a few minutes on an exercise bike along with a few minutes walking on a treadmill.

Informing him I’d no access to a bike I asked the plan be amended, explaining all my exercise had to be carried out in my own home. I didn’t have the energy to drive to a gym to exercise for a few minutes and then drive home. He faltered, unable or unwilling to devise a new plan and asked me to see a psychotherapist. To be fair, he probably didn’t want to deal with me, I was demanding, annoying and most definitely going to question everything. 

I left his office with a lighter purse, no answers, no plan, no consultant, wondering, what do I do now? It took two days of blubbering before I sat down and had a board room meeting with myself.

During the board room meeting I realised I was going about my fight all wrong, I was pushing, refusing to admit I was sick and most of all damaging my body further. It was time to step out of the workplace, time to pace myself, time to rest, time to heal,  time to accept.

And so, my fight changed. I went from that trigger headed pushing, to accepting my limitations and bobbed along on my own path for months when my physio and GP introduced me to my current consultant.

Having endured the previous man I sat in front of this lady with no expectations and within moments of arriving in her office I was warbling. She gave me the time to talk, she listened, she got me, she understood my need to exercise, my need to have a GET plan to stay sane, to keep the dream alive, one day I will run again. 

Yes, I accepted it would be a long time away but I could still hope, I could still dream, she allowed me have this hope, allowed me dream. It was such a breath of air to finally realise “yes I am sick, yes I have limitations, I’ve a tough road ahead, but someday I can return to health, someday I can run again, someday I can run a marathon again.”

That was all I needed to hear, I didn’t need to know when, just that it’s all a possibility.

Boat Man

He could build anything,
His hands sculpting
Barbed wire into fortresses
Daring any heifer take her chance,

Those same hands built a raft
On used pallets we sat,
Siblings and him bobbing
Like frog spawn, in our muddy sea of black,

The only colour jutting, blue,
The half cut barrels underneath
Keeping us afloat, his hands
Coaxing the stick, protecting all three
From the murkiness below.

http://www.mariehcurran.com

Posted in Accepting ME

The Fight Part One


Sitting on my hospital bed beside my new friend, myalgic encephalomyelitis on Friday, April 13th 2012, listening to my attending doctor tell me it would be years, not months, before good health showed up at my door again, we parted ways.

This particular consultant shared my path through the brambles of the unknown to diagnosis and it was time to be referred to another consultant.

Leaving the hospital with my diagnosis, I vowed to win the competition. I was going to be the first patient EVER to kick ME in the shortest period of time. And so, the fight began. Note to readers, especially to anyone recently diagnosed with ME, the next few paragraphs is a lesson in how NOT to face ME!

Waiting to see my new doctor, my husband was bribed to drive me to Dublin. Athletics Ireland organised a 100 meter race in conjunction with PowerAde, a sponsor of the upcoming London Olympics and all competitors, regardless of finishing places, had a chance to win a trip to the Olympic stadium and run on the track. Needless to say, I turned up, wearing my club singlet and shorts, ready to run 100 meters. Yes, incredibly stupid. 

I wasn’t completely deranged, I knew there was every chance I wouldn’t finish the race, I knew without doubt I’d be finishing last and also knew there was no way my body would be able to accept the prize. I wasn’t there for the prize, I was at that starting line to give ME the two fingers and scream in her face “I won’t be beaten”. 

Moments before the race panic suddenly hit me, running any race requires a warm up and a race of this length, while short, required a mile warm up. Haha, a mile, not a chance. I couldn’t walk a mile, never mind run it. 

I ended up doing a few stretches and slowly jogging 10 meters, after which, my heart was pounding and I feared falling on my ass. Everyone was swinging their legs, sprinting, jogging on the spot, while I leaned up against a wall attempting to stretch my body. As if Mr Bean.

Lining up for my heat, I sussed out the antelope around me, decked out in their running spikes, I’d forgotten mine, so wore my clunky asics runners as if tackling some mountain hike compared to the fit legs around me.

Once the gun fired, the field took off like comets, while my brain took a few moments to process the sound. Immediately seconds separated my competitors and I, the gap growing every breath. Hitting the 80 meter mark I wanted to fall down and die, my body screamed to stop, my mind cursed me, but I refused to quit and tortoised my way to the finish line, light years behind everyone else.

My poor husband had to endure me singing “I did it, I ran” while organisers with raised eyebrows, looked at the lunatic who held up the start of the next race because of her slowness.

Within moments I was clutching the nearest rail, my body floored and I endured a horrific week the following week. Yet in my deluded mind I thought, I just beat you ME. Even while she threw thumping headaches at me, nausea, sleepless nights, sore muscles, weak legs, I still thought I had beaten her. CRAZY.

Had I the chance to step back and undo this race, I probably wouldn’t, I’d still stand on that start line. It was all part of my path to acceptance and changing the fight towards my friend…

Posted in Accepting ME

Disappearing Plans


Plans used to be the air to my lungs and running their addiction.

I was forever accountable to a spread sheet, one travelled in my handbag along with my little black book noting every training run, every race, every time and another was stuck to a wardrobe, answering any question my husband had as to my whereabouts over the coming months.

A spread sheet still hangs on the back of my wardrobe like a gravestone and my little black book is now filled with doctors’ appointments and my daily symptoms. As for the plans, they are probably partying with my past somewhere, if you find them, let me know.

Each day is now spent focusing on the second in front of me, there is no energy to think ahead and some days there is little energy to focus on that one second. I am now in the hands of myalgic encephalomyelitis and she reminds me constantly of the little control I have on my own life.

She dictates if today is going to be a good day or a bad day, she decides when I have stepped outside my safety zone and she smiles at me from every angle of my couch, forever there as filthy air.

All I can do is play nice, respect her and be smart. Since arriving on my couch she has slowed me down, my brain has slowed, my feet have slowed, my arms have slowed and my reaction time has slowed, but in slowing me down she has opened my eyes. My house is now a home, once it was just a base camp from where I came and went; now it is my sanctuary, a home for my husband and I, our haven.

At present a recession is in full swing, homeowners clutching to their slates, banks breathing down drain pipes and beyond our world lies another, people in war torn countries, children vying for a future, refugee tents acting as homes, starvation rife, hope diminishing with every day.

As is often said to me “there are always those worse off” but honestly, there are, we should stop and think of those during our day, be grateful for what we have and never take a moment for granted.

http://www.mariehcurran.com

Posted in Accepting ME

Reluctant Acceptance


Early in my diagnosis, I attempted dumping my new friend myalgic encephalomyelitis.

Trawling the internet I tried understanding why she picked my couch to hang out on and searched how to forcibly remove her. However, there were no answers. Researchers have theories and doctors opinions but there are no solutions.

If you break an arm you follow a particular path prescribed by a physician but if you are lucky enough to share my friend you find yourself in an unfamiliar desert. That said, my GP and consultant are fantastic, both recognise the illness and its severity but there is very little either can do for me and so I quickly realised the control lies with me.  It’s up to me to do the best for me, to pace myself, to eat well, to rest, to respect the limits and be as smart as possible.

This puzzle solving led my feet to the door of acceptance. I had no choice, she was going nowhere and I couldn’t run from her.

There is no such thing as pushing through her and I can’t ignore her, as she constantly reminds me of my limitations. So, that only left reluctant acceptance. Although it doesn’t mean I have to like her.

Grey View by Marie H Curran

A girl sits deep in Manhattan
looking to the sky.
Smoke and dirt cloud over
Concrete trees surround her
(Colours all the same)

Just as she surrenders
a yellow cab
Floats by.

http://www.mariehcurran.com