Life with Chronic Illness

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

Futuristic robotic wheelchair in a high-tech medical facility, surrounded by digital interfaces and glowing blue indicators. Designed with advanced wheels and armrests, the chair is positioned under a floating holographic globe labelled "AI".

The Rise of Robotic Wheelchairs: Revolutionising Accessibility and Affordability

Leave a Comment / Accessibility & Advocacy, Life with Chronic Illness /

Robotic wheelchairs are transforming mobility for people with disabilities, offering smart technology, AI navigation, and new levels of independence. But the high cost keeps many from accessing these life-changing devices. This post explores both the promise and the barriers — and why we need to make this tech more accessible.

The Rise of Robotic Wheelchairs: Revolutionising Accessibility and Affordability Read More »

Bronze Beatles statues in Liverpool with festive lights above, promoting the Mathew Street Festival.

The Mathew Street Festival

Accessibility & Advocacy, Concerts & Events, Disability Rights & Awareness /

Liverpool, a city synonymous with music, culture, and history, is home to one of the most iconic events that celebrates its rich musical heritage – the Mathew Street Festival. This annual (fingers crossed )event, deeply rooted in the city’s identity, has grown over the years to become a symbol of Liverpool’s enduring love for music and its vibrant cultural scene.

The Mathew Street Festival Read More »

A black and white photograph of a smiling bride on her wedding day, wearing a delicate veil and a beaded tiara. Her expression radiates happiness as she looks to the side

The Day I Had to Get My Rings Cut Off – A Difficult Goodbye

Tips & Tools for Chronic Illness /

These aren’t just any rings—they hold so much sentimental value. My engagement ring for obvious reasons but my wedding ring was my Nan’s wedding ring, a cherished gift she gave us on the day we got engaged. 

I had never took my rings off since the day of our wedding so having them cut off left me in tears 😭 

The Day I Had to Get My Rings Cut Off – A Difficult Goodbye Read More »

A tribute image featuring a serene blue sky with white clouds, angel wings, a halo, and the name "Maeve Boothby-O’Neill" in elegant lettering, honouring the memory of a Myalgic Encephalomyelitis sufferer

ME Matters: A Tragic Loss & the Urgent Need for Change

Daily Life with Disability, Life with Chronic Illness /

💔 Maeve Boothby-O’Neill’s tragic passing at just 27 highlights the urgent need for change in the care of ME patients. Despite multiple hospital admissions, Maeve was failed by a system that lacked the specialised care she desperately needed. Her story is not an isolated incident—it’s a wake-up call.

This post explores the failures of our healthcare system, the stigma surrounding ME, and the urgent reforms needed to prevent more lives from being lost. Maeve’s death must not be in vain. It’s time for real change.

📖 Read more & join the fight for better ME care.

ME Matters: A Tragic Loss & the Urgent Need for Change Read More »

Illustrated digital graphic of a woman in a wheelchair holding a passport and boarding pass, with speech bubbles that say, “Let’s Talk About Travelling with a Wheelchair.” The background is pink with a border featuring travel-related icons like passports, airplanes, cameras, and tickets. At the bottom, the website https://alishawhittam.com is displayed.

Travelling Abroad with a Wheelchair: A Comprehensive Guide for Smooth and Safe Journeys

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

Travelling abroad with a wheelchair comes with unique challenges, but with the right preparation, you can explore the world smoothly and safely. From choosing the right airline to protecting your wheelchair from damage, this guide covers everything you need to know to make your journey stress-free.

✈️ Discover essential travel tips, learn your rights as a disabled passenger, and find out what to do if your wheelchair is damaged in transit. With the right strategies, accessible travel can be enjoyable and empowering.

📖 Read on for a complete guide to wheelchair travel abroad

Travelling Abroad with a Wheelchair: A Comprehensive Guide for Smooth and Safe Journeys Read More »

A fun and colourful digital illustration promoting the ME Pyjama Party for ME Awareness Week and Severe ME Day. The design features a large, sleepy bear in blue-striped pyjamas and a nightcap, stretching with a yawn. Surrounding the bear are six people dressed in various animal onesies, including a dragon, panda, giraffe, bear, unicorn, and a blue starry suit. The border is decorated with vibrant watercolour balloons in pink, blue, green, and yellow. The text reads: "Join us in your PJs for ME Awareness Week & Severe ME Day - ME Pyjama Party

Join the ME Pyjama Party and Raise Awareness for Myalgic Encephalomyelitis!

Daily Life with Disability, Life with Chronic Illness /

Join the ME Pyjama Party! 💙

Each year, during ME Awareness Week (May) and Severe ME Day (August), we wear pyjamas to raise awareness for Myalgic Encephalomyelitis (ME/CFS).

How to join:
🛏️ Wear your PJs
📸 Take a picture
📲 Post on social media with #MEPJParty

Help shine a light on this often misunderstood illness. Every post makes a difference!

#SevereMEDay #MECFS #InvisibleIllness #ChronicIllnessAwareness

Join the ME Pyjama Party and Raise Awareness for Myalgic Encephalomyelitis! Read More »

A mother and daughter smiling together at Anfield Stadium on the night of a Taylor Swift concert, capturing a joyful and unforgettable experience

Anfield from a Wheelchair: A Disabled Supporter’s Guide to Liverpool FC’s Accessibility

Accessibility & Advocacy, Concerts & Events, Disability Rights & Awareness /

Anfield is one of the most iconic stadiums in the world, but how accessible is it for disabled supporters? As a lifelong LFC fan, I recently attended an event at Anfield in a wheelchair—here’s everything you need to know about their accessibility services, ticketing, and top tips for an inclusive experience!

Read the full guide to make the most of your visit and ensure a smooth experience at this legendary stadium. ⚽💙 #AccessibleAnfield #YNWA #DisabilityInSport

Anfield from a Wheelchair: A Disabled Supporter’s Guide to Liverpool FC’s Accessibility Read More »

Illustration of a smiling man holding a large blue National Disability Card against a pink background with text promoting the card as a discreet and effective way to communicate disability.

National Disability Card UK: A Lifeline for People with Disabilities

Accessibility & Advocacy, Life with Chronic Illness, The Ability Alliance /

The National Disability Card is more than just ID—it’s a powerful tool for people with visible and invisible disabilities to access support, travel more freely, and live with greater confidence. From emergency contact features to priority access at venues like Disneyland Paris, this card helps ensure you’re seen, understood, and supported without needing to explain your condition time and time again.

National Disability Card UK: A Lifeline for People with Disabilities 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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