ME has left me

Is Lockdown over ?

/ Myalgic Encephalomyelitis / By

Is Lockdown over for you ? I don’t have to ask you to imagine how life feels for me because everyone the world over knows what it has been like during quarantine. I also know how relieved you all feel know that it seems lockdown is coming to an end. You get your life back , I don’t.

While people get to go back to work or meet up with friends, I can’t do that . I don’t get to pop out to the shops or leave the house for a walk. My life is inside the 4 walls of my bedroom , trapped forever.

You get to think about the life you had with confidence that one day soon you get to live again , I don’t. I don’t get to go back to my job or go on a date night with my Husband. I don’t get to go and see my Daughters new student house she is hoping to move into. I can’t go shopping with her while she is so excited to pick things out for her move.

I had to leave my job and the life that I loved to live completely bedridden , I’m unable to brush my own hair or dress myself. I need help to do everything no matter how much I wish I could just get up , I’m forever trapped.

So please when you get to go back to your life think about people like me and the estimated 250,000 ME Sufferers just in the UK who will never live their lives again.

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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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