This will kill me.

/ Myalgic Encephalomyelitis / By

I have to hold my hands up and say that recently I have started putting my affairs in order so to speak. I have been thinking about death a lot lately and how this illness will kill me unless something changes.

It’s been a very tough few weeks which led to another 2 conditions , which led to another 2 types of medicine. The most alarming part is that it is showing me that my body isn’t working well internally.

Just read this
A sedentary lifestyle and lack of physical activity can contribute to or be a risk factor for:

Taken from https://en.wikipedia.org/wiki/Sedentary_lifestyle

It’s very scary and I don’t think that is something that you all understand. Maybe this will help you

https://www.healthrising.org/blog/2018/12/12/death-chronic-fatigue-syndrome-me-cfs-autopsy-files/

I want every single person who reads this to understand just how severe living with Myalgic Encephalomyelitis is , I need you all to understand what it is doing to me and ME sufferers the whole world over.

We are Daughters, Mothers, Friends, Wives, Cousins , Aunts , Uncles, Sons and we need support. We need our friends and families to help us raise awareness , we need you to help by signing and sharing petitions or getting involved in fund raising activities. We need your support, your love and most of all your companionship because it isn’t easy.

This illness destroys lives and I don’t want any of our friends or family members to wish they had done more in our lives.

I’m 43 and I long for a cure to this illness so I can have my life back. However unless we raise awareness and get people talking about the severity of ME , we will just be left alone , scared, hopeless.

So today I beg you all to read this and get involved to make a difference . My story isn’t over as today I am starting a new chapter , filled with love and support from you 🥰.

Thankyou so much for reading now please like and share with everyone your know , Love and hugs , Alisha 😘

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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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