When I get fed up with waking up every morning with ME/CFS


November 2015




  • I can’t express myself well
  • I can’t remember things
  • Every part of me gets so exhausted so quickly, just talking, eating, reading, every single thing that people take for granted.
  • We don’t get the acknowledgement or care that we need that is easily available to others with serious health conditions
  • I often feel so alone
  • I hate that when I do challenge myself or go through anything emotional – it could be joy or excitement, I suffer for it
  • I hate that I get so tired I can’t stand or walk and have to lie down.
  • My mind gets confused and overwhelmed
  • That I am slow and weak
  • That my hands are clumsy and I drop things all the time
  • I don’t have the dexterity to knit anymore and sewing is difficult
  • I can’t read much at a time
  • I have nothing, when I should have a job a nice car, a house, holidays I can pay for….
  • I am and have been “old” since I became unwell, and I will live to be old, old, old, more old….
  • I have missed out on so much, not least of all the opportunity to be self-sufficient and earn a living.
  • I can’t enjoy activities with my friends
  • I can’t keep the house as clean and tidy as I would like
  • Things don’t get done – cleaning the car, the garden, spring cleaning……………
  • Keeping busy is not an option for me
  • Distraction is not always an option
  • I can’t walk the dogs as often as I would like
  • I have so much pain when the barometer drops
  • I am so poor that when I get to retirement age my income will double
  • Reading is difficult
  • Comprehension is difficult
  • My mind can’t process anything complicated
  • That a lot of things that could help me are out of my price range
  • I don’t have refreshing sleep
  • I have post exertional fatigue
  • Sometimes I wish it would all end
  • Sometimes I can’t cope
  • That I get brain fog
  • That I fade quickly
  • Sometimes others are frustrated by my awkwardness and slow thinking
  • There are so many others who are going through the same thing,

I am sorry if you hate my blog, I do too, but that’s one side of the reality that anyone with ME/CFS and Fibromyalgia is faced with daily to one degree or another.


According to: The UK government’s Foresight Project on Mental Capital and Wellbeing

The Five Ways are to Connect (with other people), Be Active (as much as you can), Keep Learning (curiosity strengthens our mind), Take Notice (savour good moments – even when you feel surrounded by road cones) and to Give (to others – even if it’s just a smile).

More than 400 world experts (from neuroscientists to economists) were involved. The findings are fascinating.

I Love

  • that I can still do all that, and lots of other stuff

Christchurch NZ September 4th 2010 Part 4

Christchurch NZ September 4th 2010 Part 4

Ted, my boarder. I hadn’t seen him at all yet throughout this drama………

I imagined him to be safely ensconced with blanket and pillows either beneath his bed or perhaps under the desk. I wasn’t about to move from my cubby.

The front porch light was out now so the power was off.  I was so relieved as the dawn sky shared its gentle hazy glow and the night began to draw to a close. It still remained so eerily quiet. No birdsong, but no sirens either. What was happening out there? I had no idea what I was waking up to so early on that Saturday morning in September in Christchurch, NZ.  I had been looking forward to spending the morning at a city pet store, spreading the word about Hearing Dogs (NZ). Maybe things would be continuing as normal? I really had no idea! It was so hard to grasp what was happening. I felt stuck in a time warp. I could do nothing. Just wait.

It was an overwhelming urge to connect with the world again that persuaded me to scurry out from under the table and start looking for a radio and some batteries. My heart was pounding hard and the sense of a possible widespread disaster wasn’t helping me with this practical move. I didn’t even know if the kitchen radio took batteries. It did, but it was going to take 6 of them. Why, oh why were the batteries stored on the top shelf of the pantry, and at the back. Everything was starting to become difficult!


“One of the most courageous decisions you will ever make is to finally let go of whatever is hurting you heart and soul.” Brigitte Nicole

What does it take to do this. Clearly courage to do it is imperative. But first you need to have identified what it is exactly.  What is it that is hurting your heart and soul?

In my experience courage comes from hardship. Hardship leads you to self awareness.

The self awareness comes from moments, from patience, from being alone, from being with yourself, again and again and again. Sometimes until that is all you have left. From learning, from experiencing and from exploring quietly.

Do you make a plan of approach? Do you write endless journals andand notes skirting around it and through it, under it and over it.

It comes from learning “it’s OK”.

It comes from a broken heart.

It comes when there is nothing left and no where else to go.

It comes from truly loving yourself.

It will confront you. You will feel it’s harsh and terrible touch, the demon’s breath on your ear, and you’re eyes will widen in fear.

The tears of acknowledgment will flow.

You have lived with this for a long long time. It has blackened your heart and soul all of that time. You have been held prisoner, tied by thick heavy ropes and your head lowered in submission.

What will it take to be free.

Action. Just do it. It is done.

You are now set free forever.



ME is such a bitch. She comes along and destroys and plunders your life.

Breaking you into fragments and shards that can never be put together again.

She steals your joy. She crushes you down. Physically, mentally, every way that can be. She takes it all away.

Leaving you with nothing, nothing but the pain and agony and the inability to sustain any kind of life or sense of being alive.

You become so vulnerable and you have no power, no power to change it and no way to make it different. To just live, and to be, to look out and see, the joy, the hope, the promise the life going on – you want to join in, you want to reach out and grab some of it. There is life out there – just not for you. ME she holds you down as

you struggle and strive to be alive, to have a life. She wrestles and kicks you back as you cry in pain and anguish – leave me alone. Give me a break. I want my life back.

But she says no, I’m not done with you yet. I will never be done with you. I want you for myself. You will never be free. Just stay where you are, looking out, looking out, looking out from your brokenness.

Christchurch New Zealand September 4th 2010 Part 3

EQ Notice ChChBy now my need was a lot more urgent. Would I make it on time……………………….

Absolutely I would. With all the chaos and clattering around me I was determined I would at least use the porcelain bowl now, even if it was to be my last comfort stop for a while. So, I did. After negotiating myself to the kitchen pantry – and reaching across the fallen fragments on the floor – for a plastic bag that would hold the debris, I gingerly ladeled out as much as I could from the bowl with my hands. Yuk.

With that sorted I felt a little more comfortable but still very much in a daze.

Going back to bed wasn’t an option and as the lurching and shaking and crashing continued I decided the safest place would be under my large, solid dining room table. There was plenty of room under there so I proceeded to construct a cubby for myself, Bart and Angus. We would ride it out here safely. Between the jolts I grabbed what I could to make us comfortable. My duvet, a pile of pillows and my water bottle.

It was so quiet and still apart from the low rumbles announcing the arrival of more shaking. I tried to measure how far apart they were, reminding me of contractions during labour. They were about a 10min apart! How long was this labour going to take?! The next one would rumble through, and then another, consistenlty.

Now comfortable, perched on a pile of pillows and comforted by the duvet, with my trusty bottle of water,

and knowing Bart and Angus were safely snuggled up with me I  began to

ponder on my situation and that of the wider community, the neighbours, Christchurch, and Ted, my boarder. I hadn’t seen him at all yet throughout this drama……………………………………………………………………………………………………..

Christchurch NZ September 4th 2010 – Part 2

It was dark and it was quiet and my mind was blank.

Everytime I tried to move the shaking would just start all over again.

Well, I couldn’t just stand here forever, so I crawled back into bed with Angus and Bart right behind me.

It felt warm and safe back in bed but my refuge was continually disturbed by the rumbling and shaking which persisted. I checked my watch. The night was almost over and I realised I would need to visit the toilet soon.

By 5.30am and after 1 hour of my home being threatened with demolition any moment it was clear this was not one of those quakes we had practiced so so so long ago at Primary school! Usually visiting the loo at this time of the morning was done easily in a sleepy daze, no worries. This time I would have to negotiate my way over the fallen books, pot plants and broken china tossed into a disordered heap in the hallway by the monster poltergeist creating mayhem in my house.

The power was now out but I was able to find some shoes to protect my feet and grabbed my dressing gown from the door hook. Here goes. Gingerly I scrabbled over and around the clutter and was able to open the toilet door along the passage. Oh shit! Before I could do anything more I would have to remove the large pot plant lodged in the bowl of the toilet. The plastic pot was broken and sharp and there was a lot more dirt in there than could be flushed away. Also the toilet seat was cracked and broken! What state would the bowl be in??
By now my need was a lot more urgent. Would I make it in time?????

Christchurch NZ September 4th 2010 – Part 1

I stood, bewildered, rooted to the spot at the end of my bed.

What the hell was happening! I stumbled forward, arms outstretched, feeling my way in the cold and darkness of the night. I must be sleep walking. The soporific state I was in lulled me as I stepped, one foot at a time cautiously.

Then the shaking came. It was violent and I lurched forth onto the floor.


The house was heaving, and heaving and heaving again. The ceiling moved, the walls threatened to cave in. The floor rocked beneath me. The nights silence was broken by crashing and banging, then heavy thuds and the crashing of glass and china.

Keep Calm whispered to me, amidst the chaos. There is nothing I can do to fix this.

I made it to the doorway and stood beneath the frame, feeling safe there. Angus the cat sat beside me. The frame was sturdy so I clung to the sides of the frame ready to ride it out. I turned to look outside through the glass door to my left. There was nothing to see but the outside light was still glowing. Reassuring! And Bart, my ever so faithful bichon/papillon stood steady half in and half out of the cat door. I smiled. He knew what to do too…….