I’m still freezing 🥶 #MyalgicEncephalomyelitis #ME #Disabled #raiseawareness

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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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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

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

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
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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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