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