Life with Chronic Illness

Myalgic Encephalomyelitis (ME), Endometriosis, pain management tips.

Illustration of a diverse group of LGBTQ+ individuals celebrating Pride Month under a colourful rainbow banner. The group includes people of various races, genders, and abilities, including wheelchair users and individuals holding signs that say “LOVE WINS” and “HUMANS ALL THE SAME.”

Accessibility and Inclusion: Making Pride Truly Welcoming for All

Accessibility & Advocacy, Disability Rights & Awareness, Life with Chronic Illness /

As Liverpool gears up for another joyful Pride celebration, it’s time to ask—who’s really included? For many disabled people, Pride remains physically and emotionally inaccessible, despite its message of love and acceptance. From parade routes with no wheelchair access to ableist attitudes at afterparties, this article explores the barriers disabled LGBTQ+ individuals face—and how we can do better. If Pride is for everyone, then it’s time to prove it.

Accessibility and Inclusion: Making Pride Truly Welcoming for All Read More »

A cheerful illustrated graphic featuring people of all abilities in colourful animal-themed pyjamas dancing together. Text reads: “Join us in your PJs on ME Awareness Week and on Severe ME Day – ME Pyjama Party. Take a picture in your PJs. Post it using #MEPJParty. Help us make a difference in 2025.

Uniting for change: The ME Pyjama Party Movement

Awareness Content, Celebrations & Traditions, Chronic Illness, Concerts & Events, Life with Chronic Illness /

In the realm of chronic illnesses, Myalgic Encephalomyelitis (ME) stands as a formidable challenge, affecting millions worldwide. Despite the invisible nature of the illness, its impact is profound and pervasive, leaving many individuals bedridden and isolated.

However, amidst the struggle, a beacon of hope shines bright: Our ME Pyjama Party.

Uniting for change: The ME Pyjama Party Movement Read More »

Digital illustration featuring a woman sitting alone on the floor with her knees drawn up, wearing a muted blue sweater and brown trousers. The image conveys sadness and isolation. Above her, the blog title reads: “The Invisible Struggle: Loneliness and Chronic Illness – Insights From A Myalgic Encephalomyelitis Sufferer.

The Invisible Struggle: Loneliness and Chronic Illness – Insights from a Myalgic Encephalomyelitis sufferer.

Life with Chronic Illness /

Living with a chronic health condition like Myalgic Encephalomyelitis (ME) can be an isolating experience, often leaving individuals feeling unseen and unheard. The invisible nature of ME compounds the already challenging journey, leading to profound feelings of loneliness and isolation

The Invisible Struggle: Loneliness and Chronic Illness – Insights from a Myalgic Encephalomyelitis sufferer. Read More »

A woman in a wheelchair faces the Eiffel Tower, celebrating International Wheelchair Day on 1st March 2024.

What is International Wheelchair Day and Why It Matters

Awareness Content, Disability Rights & Awareness, Life with Chronic Illness /

International Wheelchair Day, celebrated every 1st March, is a powerful reminder of the freedom, independence, and inclusion that wheelchairs bring to millions of people around the world. In this post, we explore why this day matters, the challenges wheelchair users still face, and how we can all play a part in building a more accessible and inclusive world.

What is International Wheelchair Day and Why It Matters Read More »

Pink graphic showing various names for Myalgic Encephalomyelitis, including ME, ME/CFS, SEID, and Chronic Epstein-Barr Virus Syndrome, with an illustration of a skeleton and the phrase "affects the whole of me.

Understanding Myalgic Encephalomyelitis: A Deep Dive Into Life With a Complex Chronic Illness

Life with Chronic Illness /

Myalgic Encephalomyelitis (ME/CFS) is a life-changing chronic illness that affects millions worldwide. In this post, I share my own experience of living with severe ME, explain the symptoms and challenges, and offer support to anyone facing this condition. You are not alone.

Understanding Myalgic Encephalomyelitis: A Deep Dive Into Life With a Complex Chronic Illness Read More »

Graphic with bold title “IMPORTANT – I Need Your Help!” asking people with Myalgic Encephalomyelitis (ME) in Liverpool, Southport, Wirral, and Chester to share their experiences. Includes an email address for contact and illustrations of a megaphone and a woman in a wheelchair holding a flag.

Calling All ME/CFS Sufferers in Liverpool & Surrounding Areas: Your Voice Is Needed!

Accessibility & Advocacy, Life with Chronic Illness, Myalgic Encephalomyelitis /

Are you living with Myalgic Encephalomyelitis (ME/CFS) in Liverpool, Southport, Wirral, or Chester? I’m collecting personal stories to highlight the gaps in care across Merseyside and push for better support. This is a confidential, community-led project — your voice could help drive real change.

Calling All ME/CFS Sufferers in Liverpool & Surrounding Areas: Your Voice Is Needed! Read More »

What is Myalgic Encephalomyelitis

According to the NHS Website, Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness

For more information please visit https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:

  • Can be severe.
  • Is not a result of unusually difficult activity.
  • Is not relieved by sleep or rest.
  • Was not a problem before becoming ill (not life-long)

Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM).

Sleep problems.

Many but not all people with ME/CFS have other symptoms.

Pain is very common in people with ME/CFS. The type of pain, where it occurs, and how bad it is varies a lot. The pain people with ME/CFS feel is not caused by an injury. The most common types of pain in ME/CFS are:

  • Muscle pain and aches
  • Joint pain without swelling or redness
  • Headaches, either new or worsening

Some people with ME/CFS may also have:

  • Tender lymph nodes in the neck or armpits
  • A sore throat that happens often
  • Digestive issues, like irritable bowel syndrome
  • Chills and night sweats
  • Allergies and sensitivities to foods, odors, chemicals, light, or noise
  • Muscle weakness
  • Shortness of breath
  • Irregular heartbeat
Information is taken from The CDC Website https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms

Myalgic Encephalomyelitis does not have a cure.

Find a Dr or Consultant who listens to you is the first step

It is a manageable condition and depending on the severity of your symptoms the more difficult this can become.

I advise learning to listen to your body and what it is telling you. If you feel tired rest and if you feel pain find a solution to reduce that pain, this could be through pain medication prescribed by your Dr.

I am not saying that finding a Dr who listens or listening to your body is going to be easy as this illness is incredibly complex for some and manageable for others.

Having a Dr who listens to you or reads about the latest drug that sufferers are recommending can take a lot of unnecessary stress and anxiety from the sufferer.

It would be best for me to point you to the above question What is Myalgic Encephalomyelitis? 

Most pages list the illness as ME/CFS or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or sometimes even Systemic exertion intolerance disease (SEID).

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