What you don’t see, when you see ME

Blog post dictated due to low energy, then manually checked ~ thank goodness for technology…

Today I woke up and my body felt like lead, my eyes are gritty, my head hurts and every muscle and joint in my body is screaming bloody hell at me.

So I cried.

I pushed myself up and went to the bathroom ~ walking hurts. I started to sweat ~ heavily.

So I cried.

I turned the shower on and made the water tepid. I sat in the bath and crudely washed my hair ~ some suds may still be left in, but it was all I could manage. I slowly clambered, in stages, out of the bath and sat on the bathroom floor. I hurts so much and am beyond exhausted.

So I cried.

I roughly dried myself and put on clean pjamas. I felt as if I had been beaten from head to toe.

So I cried.

I “sort of” cleaned my teeth ~ some toothpaste, water and a brush were involved but not much movement of my hands ~ thank goodness for electric toothbrushes. I closed my eyes and swear I nodded off, leaning against the bathroom sink, eyes closed, toothbrush in mouth. Moving, “doing” is just too much.

So I cried.

I went, very slowly, down stairs, muscles and joints protesting with every movement. I shuffled into the kitchen and took my medication and extra pain killers. Made a cup of coffee and shuffled onto the sofa. It all seems too much.

So I cried.

My husband came into me and we talked, he isn’t surprised by my condition ~ post exertional malaise (PEM), a pesky ME symptom plus I have sore hypermobile joints. He instructed me on no uncertain terms to stay on the sofa and rest. He is my carer and he is very authorative when he wants to be and I am eternally grateful for him and his growing knowledge about my condition.

So I smiled.

I am on the sofa, swollen, blistered feet up on a foot stool, another delight of mine ~ the soles of my feet tend to shred and blister which is very painful. I have a blanket on top of me as although sunny and warm today my thermostat is broken and I swing from drenching hot sweats to shivering cold. The dogs are with me, Taylor on my legs and Loki beside me. I have all I need around me so I don’t have to get up.

So I rest.

Even though this blog post is energy draining and I can’t quite feel my arms as I check for errors manually as I intermittently dictate ~ I felt the need to share.

People often see me when I am being “normal” that show all chronically ill people put on in front of others, in my case due to pride. I don’t like to come over as needy or different but at the same time I get upset when I know that some people in my life just don’t get my condition and how much it truely affects my daily life.

I may smile outwardly but so often I am clinging to every ounce of energy to do what so many take for granted. I need Dave as my carer because on many occasions I just can’t do anything at all. He is amazing, he is still always learning ~ and doesn’t judge me but he does tell me off when he thinks I am doing something I shouldn’t.

I am experiencing bad PEM today but know tomorrow will be worse ~ it always comes like this, the first day I feel terrible but the second day I feel monumentally sick ~ I am buckling up for that one. I know too that it will take a week, maybe even two, to get back to my baseline.

Baseline is the amount of activity a person living with ME/CFS can perform on a daily basis without any additional adverse affects. This means a person can perform the same amount of tasks on a good day as they can on a bad day, without any additional ME/CFS related symptoms.

With my ME and hypermobility I am exceptionally limited with how far I can walk. Taxis and Dave help me when I am needing to get from a to b. I am driving less and less because I don’t feel alert enough to be behind the wheel of a car. I drive only when I absolutely have to and nothing more.

I wanted to share this because this is the reality behind the scenes. I went to Filey for one last time over the weekend to empty our caravan. We had to sell it due to financial limitations ~ it has been our bolt hole and happy place for 6 years.

We went on Thursday until Sunday so that we could pack up very slowly ~ allowing for my ME and energy limitations. We visited Scarborough, Dave took me for a scenic drive with a few stop offs to watch the sea and slowly walk a little. We also went down to our beach for the last time, sitting on the warm sun heated rocks and watching the waves. Dave had a snooze, I just sat and watched the waves and people going about their day.

We also visited a sea life centre in Scarborough. We were there a few hours, just sitting and watching the jelly fish and turtle. We also went in with the penguins and made a few penguin friends. There was very little walking and much sitting ~ it was hugely relaxing.

Emotional as well as physical activity cause huge depletions in energy and cognitive function. My cognitive level is pretty poor at my baseline, let alone when in a state of PEM.

Travelling is tiring.

Doing is tiring.

Talking is tiring.

Feeling is tiring.

All these things build up on top of each other and knock out the pegs holding me together bit by bit until I am a heap on the floor.

I may “look” normal, sound normal, seem normal but it’s all an act ~ put on for your benefit because to answer questions is too much, to explain my condition is too much and so I smile.

So if you meet someone who you have been told has a chronic illness, sometimes it won’t be visible ~ there are many “invisible” chronic illnesses and sufferers more often than not will do everything in their power to appear “normal” in front of others. Sometimes this mask slips, sometimes it comes off completetly. Please don’t judge us and think that being sick is an act, that we are pretending to seek attention or that we are lazy. Slowly awareness is growing about these illnesses and with that some understanding and compassion. I am looking forward to the day when ME is recognised for what it truely is.

So I hope.

For those who don’t know what ME is, Invest in ME Research define it as the following.

ME stands for Myalgic Encephalomyelitis.
Benign Myalgic Encephalomyelitis (ME)/Post Viral Fatigue Syndrome (PVFS) is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. ME/PVFS has been classified as a neurological disorder in the World Health Organisation’s International Classification of Diseases since 1969 (ICD 10 G93.3). Since 1992, the term “Chronic Fatigue Syndrome” (CFS) has been included in the Alphabetical Index and indexed to G93.3.

The Chief Medical Officer’s Report on the subject of CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) issued in January 2002 recognises that “CFS/ME should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease

To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition.

Invest in ME Research also explain the terminology of ME and CFS here.

Also, for those who haven’t come across the term post exertional malaise before this is defined by the ME Association, of which I am a member, as the following: ~

Post-exertional malaise (PEM), or post-exertional symptom exacerbation, describes a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity.

PEM is a highly characteristic clinical and diagnostic feature of ME/CFS.

In some respects, PEM is an illness within an illness.

Following this they go on to quote different research projects and thoughts to consider..

There is a growing consensus that ME/CFS may be an illness that is triggered by infection, which then causes the release of cytokines – immune system chemicals that produce flu like feelings, pain and malaise following any infection. This normal acute immune system response, which is unfortunately known as sickness behaviour/response, then continues in the form of low level immune system activity, continued cytokine production, and activation of immune cells in the brain called microglia. This is a model of causation involving on-going low-level.

You can read more about it here.

I am slowly going through my videos and photos from the weekend ~ our farewell as we close the chapter on Filey. Most of the blog post was already written (I added a bit at a time whilst we were away) and so I hope to share that with you either later today or tomorrow. Honestly ~ I don’t  know where I would be without technology and the ability to dictate and watch the words come up on the screen. Obviously the photos need manual upload but I am enormously reliant and grateful for modern technology.

I don’t know if many people reading this blog can relate to my condition and how it affects me. This post is really only a snapshot, a very brief explanation of a bad day. My aim in sharing is that it may reach someone who is new to this diagnosis, who may have a brother, sister, mother, father, child, friend or lover with this condition and that it may help further understanting.

So I share.

Lyrics
Where is the moment when we needed the most?
You kick up the leaves, and the magic is lost
They tell me your blue sky’s faded to gray
They tell me your passion’s gone away
And I don’t need no carrying on
Stand in the line just to hit a new low
You’re faking a smile with the coffee to go
You tell me your life’s been way off line
You’re falling to pieces every time
And I don’t need no carrying on
‘Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know
You tell me don’t lie
You work at a smile, and you go for a ride
You had a bad day
The camera don’t lie
You’re coming back down, and you really don’t mind
You had a bad day
You had a bad day
Well you need a blue sky holiday
The point is they laugh at what you say
And I don’t need no carrying on
You had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know
You tell me don’t lie
You work at a smile, and you go for a ride
You had a bad day
The camera don’t lie
You’re coming back down and you really don’t mind
You had a bad day
Sometimes the system goes on the blink, and the whole thing it turns out
Wrong
You might not make it back and you know that you could be well, oh, that
Strong
And I’m not wrong
So where is the passion when you need it the most?
Oh, you and I
You kick up the leaves and the magic is lost
‘Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know
You tell me don’t lie
You work at a smile and you go for a ride
You had a bad day
You see what you like
And how does it feel one more time?
You had a bad day
You had a bad day (had a bad day, had a bad day, had a bad day)
Songwriters: Daniel Powter
Bad Day lyrics © Sony/ATV Music Publishing LLC

x~X~x

 

Author: crazypurplemama

Adore all things purple, wife, mother, amateur photographer, dog lover & Blogger.

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