It Is ME Awareness Week 2020

It Is ME Awareness Week 2020

As many of you will know, my Daughter has ME, and today is the start of ME Awareness week 2020.  I will start my week of posts by talking about what ME is.

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. With the current Corona Virus, it is feared that more and more people will suffer with ME.

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 and now Corona Virus
  • 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

It Is ME Awareness Week 2020

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36 comments

  1. Thanks so much for sharing this, it’s always good to raise awareness of things like this. Really hope you and your daughter are both doing well. Sam – Coco Travels

  2. I will hold my hands up and admit that I didn’t really know much about ME before reading this post. So many symptoms are linked with ME! I hope you are all having a good start to the week!x Sim x

    1. A lot of medical professionals don’t know much about ME either so you are not alone. With Awareness weeks it gives the chance to share what the illness is and how it affects all our lives

  3. Thanks for sharing about ME, pretty much all I know about it is through your stories of your daughters journey. It definitely needs to have more awareness raised around it x

    1. Thank you, it does need more awareness and I try as much as I can to raise awareness but even medical professionals dont understand or choose not to understand it

    1. It is a life changing illness and one many don’t understand, even the easiest thing of getting up and getting dressed is a major thing to them

    1. The main symptom is the chronic fatigue, as even the slightest thing can tire them so easily. But yes there are many symptoms, C’s main symptoms are the fatigue, headaches and pains

  4. thank you for describing all the complex symptoms of ME. I really hope there is more research to understand what causes it – and more support for patients.
    Much love to you, your daughter and your family.

  5. Such an amazing post to raise awareness especially at a time like this when this virus also has an impact x

    1. It is important to raise awareness and it is thought that many more cases of ME will come about following the current virus

  6. This is a really good post for explaining simply what ME is, I’ve never really understood. It’s sad that the corona virus could mean more people getting it

    1. Thank you it is an illness which is overlooked which is why I have dediated this week to sharing about the illness x

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