ME Pyjama Party

It’s not long now till our ME Pyjama Party and all you need to do is tag a pic of you in your pjs using #MEPJParty .

Let’s get it trending and give ME a face not just a statistic.

#MEPJParty

So make sure you are following our socials –

https://www.facebook.com/MEPJParty/

https://twitter.com/mepyjamaparty/

https://www.instagram.com/mepyjamaparty/


Don’t forget to tag your pics #mepjparty

Love always 😘

Picture of Alisha

Alisha

Proud Wife, Mother and Nanna . We married 19 years ago in Rome, Italy surrounded by our friends and family. We have the most beautiful, caring, considerate daughter, she makes us proud every single day. I am nan to Alfie, our Black Labrador and he is my best friend in all the world, I love how he understands that just laying next to me is all I need on a bad day and on a good day well it is cuddles and kisses galore. Liverpool born & bred, I never had enough guts to ever move away. Maybe it’s on my cards in the future. I have an illness that has destroyed my life, that illness has led me to blog my life with no filter. I put everything into raising awareness of Myalgic Encephalomyelitis and I would do anything to make sure no one else has to feel the way that I do. We have fun in our little home and I do anything to make my family happy. Love meeting new people over the web and hearing their stories. I Love making new friends and just trying to make a difference in this world.
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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!

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
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Illustration showing a woman with long dark hair in a wheelchair beside two black Labradors, scenes of her filming in bed with her dogs, and artistic depictions of brain inflammation and neurological pain, highlighting life with severe Myalgic Encephalomyelitis.

Living with Severe Myalgic Encephalomyelitis: A Glimpse into My Everyday Life

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The ME Pyjama Party

I'm thrilled to invite you to a special event that aims to make a significant impact in the lives of those living with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).
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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.

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Together, we can shed light on the challenges faced by those living with ME/CFS and advocate for greater understanding and support
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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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