Living with ME · Window Watching

Wellies and Sandbags


My outings go something like this. The local co-op for garden, hen and vegetable supplies. The food store for well, food. The local garden centre for garden plants and local eateries for a treat. Oh and of course my local GP’s surgery.

My husband drives me to the places furthest from us and I drive to the closer outlets, enjoying those brisk moments of complete independence.

Rarely am I seen in all of these establishments within the course of a month or even two month period. Pacing being my key.

Along with outings, visitors are also restricted in this household.

Then last week happened.

It rained and it rained and it rained. To the point where the poor little river across from our home became a raging torrent. A torrent which reached capacity and began dumping water out over a ditch and onto the road. The road, bless her, had to take the flood somewhere and so decided to flow in our front gates.

Fun.

Within minutes, our drive went from having a few puddles to becoming a rising moving stream of water. And our garden morphed into a sodden sponge. Great fun.

Minutes after that our back garden, no longer able to rid itself of excess water began dumping water behind our shed and soon flooded our sewage system.

Within 45 minutes we had neighbours visit and council workers and the councils head engineer. There were shovels and later a digger to divert the flow outside our wall.

A wad of fun.

Thankfully the rain stopped, the river got her wanted reprieve and the flooding began to recede. Of course our story wasn’t done. Thinking ahead, sand was ordered, sandbags were ordered and filled oh and of course there were leaky wellies that needed replacing. And so I found myself in lots of local establishments. And all within the course of a number of days. Needless to say, I’ve slept and slept and slept since

 

 

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Window Watching

It’s Autumn


As the sun alters our light and that sharp pinch is felt at daybreak and twilight, and as this years fledglings move swiftly on and the summer harvest fills up the pantry, we hear the signal as its sung from the trees:

It’s autumn and there’s no rush.

That’s the thing about autumn. It’s an in-between. A pause between the brutalities of summer and the harshness of winter.

Summer is an assault of the senses as sight and sound and hearing are all set at full capacity. Colourful leaves and wafts of perennials demand our attention as they drip from each nook and cranny of garden and ditch and hedge. While winter pares everything back. Strips everything bare, and makes us sit with ourselves, which for some can be uncomfortable as they long for the distraction of summer. For others it’s welcome. Their skin a comforting blanket of self as everything else has died back.

Now that intensity of light is fading and the nights begin drifting into morning and evening, we see, hear and feel the signal. We know what’s to come.

In the meantime, it’s autumn. There’s no rush.

Living with ME

The Text Message


Last week I received a text from a college friend living nearby.

The text read: “Are you free Saturday next?”

Another college friend was stopping by and so I was being asked to drop in and say hi.

My reply read, “Sorry. I have to bail.”

And so I explained, “We had a wasp nest and a good friend who keeps bees sorted it out for us. The trade off was that I minded three kids while the job was being done. Wrecked. Need a few days to recover.”

The response to my curt statement was a sympathetic one. My friend well aware of the demon that is ME. But as she replied, I was asked: “How do you do it? I’d have cracked up by now.”

My text back to her said, “The trick is not to think about the future. That said, I’m looking forward to the future right now, at least in another few days when this is behind me and I’m back in my zone!”

Putting down the phone and riding out the roughness of payback, I thought about my friend and understood her response. I too would have probably said the same thing had we been playing opposing roles in this day of our lives.

And then I realised I was angry. Way back in the beginning, back when I was fighting to keep my past. But I soon learned the anger didn’t change my illness, in fact it made it worse. So I stopped being angry.

It was actually a simple thing to do, to throw anger out a window and breathe in the fresh air of acceptance, allowing just enough room for hope to settle into the mix, but not too much. Too much would mean chasing down the answer to the elusive question. That question isn’t even going to be mentioned here because as I say, acceptance is all I can breathe today.

Window Watching

Climate. Change?


Climate. Change.

Two words known in every corner of our globe, be it in the form of extreme heat, floods, famines, cyclones.

Nature is a sensitive creature and for decades we’ve treated her badly, now she’s breaking under our bullying tactics.

The reason she’s breaking and the reason we’ve become such bullies is simple. We’re taking too much from her, too quickly.

In order to solve this problem, we need to revert back to simple. We need to eat less, build less, use less, consume less. Unfortunately this less will mean a reduction in global sales, a reduction in taxes and will ultimately affect capitalism. Something our governments want to protect at every cost and so they aren’t going to lead this crusade.

We must.

We must look at Greta Thunburg, the Extinction Rebellion protests in London, school children taking to our streets and ask what is the common thread?

The future.

A future this planet or this species won’t have unless we alter our present.

The argument that climate change is alarmist vocabulary is long gone. Look to those in Mozambique who saw two cyclones in the space of six weeks when they usually only see one every nine years and Iran, who used to rely on heavy rains to fill up canals yearly. Now those rains aren’t guaranteed and when they do come they often bring extensive flooding. As for the extreme heat across Europe at present, where deaths have already occurred.

We all know our climate is changing and the facts have told us what we must do to alter that change. From reducing waste, to carbon emissions, pesticides, chemicals etc.

However, the conversation around our next step has the potential to drag on into the next decade unless we begin to take action now. We don’t have time for lengthy conversations anymore. The time we do have needs to be used to alter our behaviours and the way we live.

We’re on the cusp of a new age, an Ecological Age and the transition period must be swift.

Consumerism will have go, so too will materialism and the new social norms must become “Oh this dress? Yes, I’ve been wearing it for ten years now.” And “A new handbag? This one from twenty years ago is still on the go, why would I buy a new one?”

Businesses, consumers, every member of our society is going to have to adapt their behaviour and buying patterns so that we will have a chance of a future on this planet. And a chance to allow mother nature her much needed reprieve.

ME Awareness

Why Words Matter


Words can be soothing, powerful and strong. Words can help ease pain and suffering. Words can explain the why’s of the world, ask questions of the world. Words can annoy, words can destroy, but ultimately, words can and do lead to changes within our world.

I began sending words to our department of health in 2015/2016 and when a new minister took over, I passed my mantle on to him as I directed my badgering words at him.

The letters were always the same. When will ME patients in Ireland be treated as they deserve to be treated?

Then, in July of 2018 I learnt about the failed treatment by our HSE of patient Christine Fenton and an investigation report which recommended a working group be set up so as to implement three changes within the HSE:

10.R9. It is recommended for the HSE that a working group be established to consider the development of a national guidance document for ME.  It is also recommended that as part of the remit of this working group, protocols for ME patients can be developed for consideration by the HSE to be formalised as consumer protocols for ME patients.

12.R1. It is therefore recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding the condition together with information in relation to the care and support available through the HSE for its sufferers.  To develop this guidance document, a working group to include relevant stakeholders should be established.

8R.1. It is recommended that there should be a standardisation of assessment tools and methodology for ME sufferers in all CHOs. Any assessment process used for the purposes of reviewing a service user’s care plan should be relevant to the needs of the service users so as to appropriately & adequately assess their needs.  There should be uniformity in the assessment models used in each community health area. 

And so my question changed. I began asking bluntly, sometimes daily, when the recommended working group would be set up.

In April of this year, the minister for health sent me forward to the HSE where my question was finally answered.

I can’t share the workings of the group as they are confidential but thanks to Christine, some information relating to the working group has been made public and can be viewed here.

As I said, words can and do lead to change. Thanks to Christine Fenton and her perseverance there is hope change is set to occur within our health system.

Living with ME · ME Awareness

The Marvels of May


Two houses are under construction. The builders astuteness and attention to detail better than any other builder I’ve ever seen.

All day damp mud is drawn from the nearby river as the symbiotic rhythmic sound of their chatter echos about me.

There are no jack hammers or concrete lorries. Just simple mud to call a home. Soon there will be chicks and then later in the summer, the take off flights will begin. But for now, I marvel at the talents of the house martin.

While nest building is in full swing and the cuckoos call is added to mix of chatter, things too are changing in my world. Or I should say our world.

You see for years patients with ME have had to endure scoffs from medics, from friends, from families. Even from researchers.

By the time the house martin chicks have fledged and moved onward to their wintering ground in Africa, I hope the changes within our world will continue to build.

Days ago, Dr Davis and his team announced they’re a step closer to devising a blood test for us. Imagine that. Going to the doctor and having one blood test done? How many ME patients waited months or years for their diagnosis? How many tried to talk over doctors as they said “It’s all in your head…” “ME doesn’t exist…”

Our day of house building has begun. For more information see this link

Published Pieces

Voice of Eve


 

Living mainly adrift from the world enables me to see through the lens of life, from afar.

It’s through this pair of binoculars my poems are often crafted and two of my creations were recently published in the magazine The Voice of Eve.

The first, We laugh so Hard speaks about the too many people within our communities struggling to keep afloat and the second Keystrokes and Brown Doors looks at communities again, only this time the concept of being part of something and yet, isolated.

Both poems can be read in the current issue on page 100.

Window Watching

Never in Haste


It’s said we should never make decisions in haste and so I’m taking time to mull over my participation on this internet of things.

Years ago I dumped social media. As I said to Facebook when asked why I was leaving, “I no longer wanted to take part in their social experiment.” A sick experiment which has devastated lives and enabled and emboldened the negatives of the human psyche (something which also applies to Instagram and Twitter).

Since leaving that world, I’ve found a happy space. That balanced space where I have the time to give to friends and the time to give to family. My phone – a phone without internet access – is rarely near me and it has a thing called voicemail, so if anyone does need to contact me, they can.

It’s refreshing not to know every tiny insignificant detail of someone else’s life and equally refreshing to not care about such silliness. As for my linkage with world news… I use the TV and the internet via my PC to check in on world news and do so knowing I’m reading what I want to read, not something somebody else thinks I should read.

Yesterday, I chose not to find out the name of a certain person and I too chose not to delve into his details, instead I focused on the lives lost in New Zealand. Today I think of their families and the funerals they are planning, as I ask myself if the time has come to cut ties with this web? After all, why should my data be saved alongside someone whose views I reject?

If I entered into a room of hatred and spite I’d quickly leave. The internet affords me no such move. I’m sharing the same data centres and space as those whom I wish to dismiss. Whether I want to or not.

*A version of this blog was printed in the Irish Independent Letters to the Editor, March 18th 2019.

Living with ME

Breaking Balance


“La la la la la la la la la… la la la la la la la la la…”

“I love my body, I love my body…”

Had any one of you placed a listening device within my home last Saturday evening, these are the mantas you would have heard emanating from the walls, as I lay in bed suffering from what for me was a busy Saturday.

That morning I woke and did very little. The kitchen table had been set the night before so all I had to do was dress and put bread and milk and butter out. Then I sat and rested until three good friends arrived for their prearranged visit shortly before noon.

They all brought additional food with them and all made trips to the kettle for themselves, meaning I was the spoilt one, the one sitting doing nothing as they milled around my kitchen – something they’re well used to doing by now -.

I truly do have the best friends in the world and love having them visit as they share their thrills and spills with me. One of the trio in particular is hilarious as she keeps an eye on her watch and when the hand strikes one hour, she’s up off the table like a hospital matron or prison warden. Cleaning the things away and washing dishes before wiping down the counter top and herding everyone out of my home!

About two hours after their visit my body began showing all the usual signs of post exertional malaise. There was the increased fatigue, the sore legs, the sore head and the angry digestive system – I’ll let you assume the details here – and so for the remainder of the day I rested and rested before eventually toddling off to bed where my body decided “Sleep, who needs sleep? Especially when you’re exhausted?”

Thankfully I did pass out here and there.

Yesterday was then spent trying to get my body back into my zone as I call it, so I sat on my ass for the day and snoozed on and off before tackling sleep again last night. Thankfully I woke today almost back to where I need to be. Another day’s rest and I should be there.

This is not the end of the story however, this story has a second side….

On Saturday, after a shower, ironing his clothes and making breakfast, my husband left our home at noon to attend a family gathering and didn’t return to our home until close to or after midnight.

His outing entailed 16 kids and counting, double that or more in adults. Noise, noise, noise… and after all this, he fell into bed and slept. I won’t begin to tell you just how jealous I was at 3am.

To turn me into an entire green monster, he woke yesterday and was tired but nowhere near as tired as me. He even managed to leave our home to run an errand in the afternoon. It was as if his body was saying na-na na-na-na to my poor broken one.

So I ask you this puzzling question… When did the see-saw of balance break?!

Living with ME

Being, Included


Living in a body unable to travel far means I no longer wander into the adventures of the outer world.

Now don’t get me wrong, I still have adventures but they’re different. They involve burnt red coloured foxes and large grey winged herons, staccato screeches of pheasants and the copycat imitations of starlings.

My adventures also include short snapshots of the world. A short visit or a short visitor. A pop by of a neighbour or a passing friend but for the most part, I live away from the workings of the outer skins of the world. I just am.

It’s nice though not to be forgotten by that world and yesterday that world reached out to me, inviting me to a wedding, the requester aware I would not make it but nonetheless wanted to include me. As was said, I’m a friend.

Inclusion is a must in our globular world, a needed reference point upon our ever moving stage, as needed as our North and our South. Each of us dots among a giant compass of a world, dots joining one another together. Some lines apparent, others more blurred.

I sit within my blurred line today, thankful to be able to just be. Included.