Sometimes life gets really hard!

/ Myalgic Encephalomyelitis / By

Tina Turner said it best .

I don’t really want to fight no more . This is time for letting go …

While she sings of love and heartbreak the very words speak of letting go really do shout out at me .

If you have ME or Fibromyalgia or any of the other silent illnesses for which you fight every single day . You fight just to get out of bed every day , you fight against the system that fails us . We fight to prove we are ill. We fight to keep relationships together , to keep our family life on track . We fight to keep hold of any part which makes us who we are . We fight to keep friendships alive . We fight to stay awake . Fight to walk up and down stairs in our own homes . We fight against illnesses and repucussions of being so ill and unable to move .

I don’t want to fight no more.

I need to face my reality.

What do I have left ?

Do I have people in my life out of a sense of duty ?

Let’s be absolutely honest , I am absolutely awful company . Awful to be around .

I can’t entertain people. I can’t even hold a conversation. I am absolute terrified of being in social situations. Terrified of what people are saying about me .

It’s a the stage now that I think it’s just best that I don’t even bother with socialising, it’s pointless that I am there anyway .

I know people will read this and think I am being dramatic or feeling sorry for myself . I really am not . Just facing facts .

I can’t work . If I am really honest this illness is not going to get better for me . So my life now is my bed with my curtains closed .

Since my hands are so bad I can’t even use my walking stick or a wheelchair to get about . So I have absolutely no independence. I am not even 40 yet !

The only thing I do have is anger !

Anger that the medical profession don’t take this illness seriously. Surely I am still human , I have feelings . Surely I have rights .

Anger at our government for not understanding their constituents and not providing what we need to make a real difference in our lives .

Anger that I am left .

Anger that no one is there for me .

Anger of all the things I will never get to do .

I still have hopes & dreams .

I want more than anything to get on a plane with my little family and have a break that we need so badly .

I dream of holding another baby in my arms , to experience all the things I never got to experience the first time .

I dream that my husband and daughter live their lives properly. Not this thing we call our lives right now .

Related Posts

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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