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ME Awareness Week 2019

ME Awareness Week 2019 runs from the 6th to 12th May, you can find out more about it on the ME Associations website

As many of you know my Daughter C has been unwell since 2015.  Finally being diagnosed with ME and Fibromyalgia, plus other conditions.

This week I am going to be highlighting all the different aspects of the illness.  Including our story, medical support, and more importantly what is ME.

What is ME

I will start at the beginning and explain what Myalgic Encephalomyelitis or ME for short is. ME is a long-term chronic, fluctuating neurological condition that causes symptoms affecting many body systems.  Most commonly the nervous and immune systems. ME affects an estimated 250,000 people in the UK and around 17 million people world-wide.

Everyone who suffers with ME will experience different symptoms.  Some are completely bedbound, some can do normal everyday things in moderation.  Everyone is different, but this is an invisible illness, although one of the tell-tale signs myself and a lot of other parents see is that dark rings around the eyes.

What are they symptoms?

Everyone who suffers with ME has a different pattern of illness and symptoms, some get worse over time, others stay the same or improve.

The one common symptom is the feeling tired. The easiest way I found to understand this is think when you have been your most tired after a heavy night out, when you have been ill and magnetise that by 10 and you will be somewhere near.  Where we can just sleep it off, those who suffer with ME can not it is with them 24/7 and no amount of rest or sleep will make it better.

Other Symptoms

Feeling generally unwell

  • Having flu-like symptoms
  • Recurrent sore throat

Pain

  • aching muscles and/or joints
  • nerve pains or pins and needles
  • headache or migraine
  • twitching muscles or cramp
  • abdominal pain
  • chest pain
  • back pain

Sleep disturbance

  • unrefreshing sleep
  • difficulty getting off to sleep
  • waking for long periods during the night
  • light sleep
  • sleep reversal
  • sleeping for a long period

Problems with the nervous system

  • Poor temperature control
  • dizziness on standing or sitting
  • hypersensitivity to noise or light
  • sweating
  • loss of balance
  • poor circulation

Digestive problems

  • nausea
  • loss of appetite
  • indigestion
  • excessive wind or bloating
  • cramps
  • alternating diarrhoea or constipation
  • irritable bowel syndrome

Intolerance and increased sensitivity

  • bright lights
  • noise
  • odours
  • some foods
  • some medication
  • alcohol

As you can see there it is quite a vast range of symptoms.  Some sufferers will suffer with more than others.

What causes ME

There are many ways in which you can become unwell with ME

  • Virus – Glandular Fever, Chickenpox, meningitis, labyrinthitis
  • Immunisations – some people who have not been ill can react to an immunisation

I hope I have explained what ME is and the various symptoms that ME sufferers can have.  Tomorrow I will be talking about how my Daughter C became ill and her symptoms.

I have spoken about C’s illness right from the start and shared our story over the past 4 years.  If you would like to read up more you can find all the posts here

 

ME Awareness Week 2019

Day 1

What is ME?

 

 

 

 

 

 

 

 

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Comments (14)

  • Jaime Oliver 3 months ago Reply

    It is such a hard condition isnt it. My cousin suffered for many many years before being diagnosed.

    admin 3 months ago Reply

    It is a hard condition and unless you fight for diagnosis and tests etc you will not get anything that is the saddest part about ths ilness

  • admin 3 months ago Reply

    So many people are totally unaware of this condition. Like you say its probably because of the wide range of symptoms that can vary from person to person.

    admin 3 months ago Reply

    It is a condition that many are unaware of, until you start speaking to people and everyone seems to know someone who suffers. The symptoms to vary from each person though which does make it harder x

  • Rhian westbury 3 months ago Reply

    I’m going to be honest, what I know about ME is pretty much just what I’ve read on your blog over the years but this is a really comprehensive idea of what it’s like and it’s so important to raise awareness for x

    admin 3 months ago Reply

    I did not know much about it before being thrown in the deep end with it. As it is ME Awareness Week I thought I would do daily posts on various subjects so started with an indepth look at what ME is. Although this is hard in itself as everyone sufers differently.

  • Anosa 3 months ago Reply

    Even though its good to know the diagnosis and what steps to take next it doesn’t make it easier. I did not even know so many people suffered from ME.

    admin 3 months ago Reply

    Getting the diagnosis looking back was the easy part the treatment after diagnosis is a constant battle x

  • Rebecca Smith 3 months ago Reply

    It is so important to raise awareness of ME. I know a little about it but learned a lot more from this post!

    admin 3 months ago Reply

    Thank you I am glad the post helped, sadly it is one of those illnesses that seems to be the less known about, I had no idea really until we were thrown into the deep end with it, so raising awareness is all I can do to help others understand what the illness is x

  • Jenny 3 months ago Reply

    My sister suffers with this and she isn’t able to do much at all.

    admin 3 months ago Reply

    I am so sorry your sister also suffers with this horrible illness, that is the hard part the loss of normal life x

  • It must be so difficult to manage symptoms on a daily basis

    admin 2 months ago Reply

    It is but sadly is our daily life and become the normality x

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